tag:blogger.com,1999:blog-51403779923099879622024-03-12T18:12:56.018-07:00Days of Whine and Rosé: Life In An Autism Household Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.comBlogger64125tag:blogger.com,1999:blog-5140377992309987962.post-84839014391901086462015-06-09T16:59:00.000-07:002015-06-09T17:21:26.128-07:00He's Back.... Is Andrew Wakefield Behind the "Autism is Deadly" Anti-Vax Campaign<div class="separator" style="clear: both; text-align: center;">
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For the last four years, March 1st has signified the official Day of Mourning for victims of filicide, people murdered by family members or caregivers. The Autism Self Advocacy Network (ASAN) and others have spearheaded many campaigns around the Day of Mourning, including <a href="http://autisticadvocacy.org/2015/01/2015-day-of-mourning-vigils/" target="_blank">vigils</a> and social media awareness campaigns. The social media initiatives focus on remembering the victims, and changing the public's perception that somehow, because of the victim's disability, usually autism, the murderer should be excused. Understood. Sympathised with. That campaign in particular has been highly successful, so successful in changing people's opinions that a "documentary", and I use the term loosely, deifying a mom who murdered her son was kept from mainstream release.</div>
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The "documentary" <i>Who Killed Alex Spourdalakis</i>, was made, and distributed by, The Autism Media Channel. </div>
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Andrew Wakefield's Autism Media Channel. </div>
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Yes, that <a href="http://en.wikipedia.org/wiki/Andrew_Wakefield" target="_blank">Andrew Wakefield</a>. </div>
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The "documentary" is in fact a carefully guided Wakefield anti vaccine, conspiracy theorist, propaganda piece. An excellent review can be found <a href="http://leftbrainrightbrain.co.uk/2015/02/12/movie-review-who-killed-alex-spourdalakis/" target="_blank">here</a>. Oft discredited doctor and "research partner" of Andrew Wakefield, Arthur Krigsman, is cited throughout, and Alex's murderers, his mother and godmother, consult with Krigsman repeatedly in regards to Alex's care. There is a lot of <a href="http://scienceblogs.com/insolence/2013/06/14/autism-biomed-and-murder-of-alex-spourdalakis/" target="_blank">conjecture</a> that Arthur Krigsman, or someone else, was encouraging the use of biomed quackery to "cure" Alex, very likely "prescribing" Kerri Rivera's Chlorine Dioxide protocol. There is strong belief that had Wakefield and The Autism Team not been involved with this family, guiding them, influencing them, that Alex might still be with us today. It is not surprising that no respectable professional has allowed themselves to be connected to this "documentary". It did not receive standard release, and in fact was only made available through The Autism Media Channel itself. Reasonable people did not want to be connected with a movement that accepted murder of autistics as justified and excuseable. </div>
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After this years Day of Mourning, Wakefield supporters started using the names of autistics murdered by loved ones to suggest that autism is deadlier than measles. Their justification for this outrageous statement was that more autistic children die each year than children die from measles. They are saying that children murdered by their parents, children who wandered and drowned, children who died in car accidents, all died because in THEIR minds, autism, not murderers or a society not set up to support families of wanderers, kills.</div>
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"I do think we should keep pointing out that the autism epidemic is worse and just as scary as the polio epidemics that I remember when I was a child."</div>
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They cite "facts" like this</div>
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US Children killed by autism in the last week: 5</div>
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US Children killed by measles in the 21st century: 1</div>
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Thankfully, this movement didn't gain much attention. That is until this past week. </div>
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After the conviction in the US of Daniel Smith for selling MMS, Kerri Rivera shut down all her online business enterprises and has gone incommunicado. She <a href="https://nomorebleach.wordpress.com/tag/kerri-rivera/">disappeared</a>. Leaving her followers confused and dazed. And for some, scared. The rats have been slowly jumping ship. But you don't follow Kerri Rivera's horrific protocol on a whim. You have to be a special sort of person. That person still needs an "outlet". Since t<span style="background-color: transparent;">he anti vaccine movement and autism biomed cure pushers run in the same circles it was a natural for the same people seen in MMS groups to start popping up in the anti vaccine/ Wakefield groups. </span></div>
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<span style="background-color: transparent;">Now, Mr Wakefield has recently started an <a href="https://www.indiegogo.com/projects/urgent-film-completion-exposing-cdc-vaccine-fraud#/story">indiegogo</a> campaign to raise $22 000 to fund his latest quack-u-mentary, in response to the proposed legislation in many states making vaccinations mandatory. He's quite fond of indiegogo. Regularly raises tens of thousands of dollars for his "projects" through the site.</span></div>
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<span style="background-color: transparent;">Here's the trailer, trigger warning, you may not want to watch this</span></div>
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With the added troops from the biomed exodus, the social media campaign started in the anti vax community has kicked up again, with renewed vigor</div>
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The troops have been posting all over facebook, targeting in particular groups for parents of wanderers. By focusing in these groups on children who have died from wandering, they are playing on the fears of these parents.</div>
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This is where I get pissed off.</div>
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I am the <a href="http://daysofwhineandrose.blogspot.ca/2013/10/autism-and-wandering-mothers-nightmare.html">mom</a> of a wanderer.</div>
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Those fears are very real. And to manipulate people towards your agenda through their fears for their child's safety is despicable.</div>
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AUTISM is not deadly.</div>
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Vaccines do not cause autism.</div>
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To draw a connection between a child murdered by their parents and children lost due to wandering, or killed in car accidents, is horrific! Are they saying that the parents of a child who wanders is as bad as a murderer? No, they avoid saying that outright. But what they are saying is just as bad. That it is not the murderer who killed the child, it is Autism. That is the same as blaming a rape on the victim being a woman instead of blaming her attacker. They are saying autism is a deadly disease caused by vaccinations. Likening autism to cancer is a common thread amongst these fanatics, as is using fraudulent studies to back up their conspiracy theories regarding vaccines, but never before have I seen them use the deaths of wanderers, and their parents' pain, to further their cause. This deflects attention and resources away from the real issues of wandering (a society not set up to assist families in keeping their loved one's safe) and places it solely back in Wakefield's lap. It draws attention away from the VICTIMS of filicide, makes their murderers into martyrs, and again, plays back into Wakefield's lap. </div>
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Just as we finally started to see a future without the likes of quacks like Kerri Rivera, Andrew Wakefield steps back in and justifies filicide. In the words of ASAN:</div>
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Change the conversation. Center the victim. Condemn the murderer. Refuse to “understand,” excuse, justify, minimize, or
normalize a parent killing their child. Refuse to accept this. Refuse to allow this to become our new
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Don't allow Andrew Wakefield to make this the "new normal" simply so he can push his own quackery.</div>
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Refuse to allow Wakefield's minions to manipulate the valid fears of the parents, like myself, of wanderers.</div>
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Autism doesn't kill.</div>
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Quacks do.</div>
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<span style="color: #660000; font-size: large;"><i>IF you'd like to counteract this despicable campaign, please post your thoughts on the social media of your choice and include the hashtag #QuackQuack . </i></span></h2>
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Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com3tag:blogger.com,1999:blog-5140377992309987962.post-48891106805097777722015-04-15T13:00:00.001-07:002015-04-15T13:09:47.574-07:00Mom from Autism Household goes on Vacation Without Kids! Oh The Humanity!!<div dir="ltr" id="yui_3_16_0_1_1429124754082_2128" style="background-color: white; font-family: 'Helvetica Neue', 'Segoe UI', Helvetica, Arial, 'Lucida Grande', sans-serif; padding: 0px;">
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<tr><td class="tr-caption" style="text-align: center;">photo courtesy <a href="http://waynepollard.blogspot.ca/" target="_blank">Wayne Pollard</a> Photography</td></tr>
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One of the hardest, but most necessary things a Mom must do is give herself permission to take a break.</div>
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That's hard for any Mom</div>
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But I've found its particularly hard for an Autism mama.</div>
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There are additional worries, of course, but that's not the issue, because A Mom will worry no matter what. It's our prerogative.</div>
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No, what really makes it hard for an Autism mama to take a break is EVERYONE else.</div>
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So What GIVES?????</div>
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What is the issue society has with an Autism Mama taking a FREAKING break??</div>
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<tr><td class="tr-caption" style="text-align: center;">Photo courtesy Days of Whine and Rosé <a href="https://www.facebook.com/daysofwhineandrose" target="_blank">Facebook Page</a></td></tr>
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Being a parent isn't easy. But being an Autism Parent has its own challenges, separate and above. And guess what, a LOT of those challenges are not a result of the autistic family member themselves, they are a result of outsiders. </div>
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People are constantly either attacking your parenting or saying things like "I don't know how you do it!" "how do you cope?" or "I couldn't do it" ( hate that last one most of all, always want to respond with "really? You'd just abandon your kids?"). But unanimously the attackers and supporters all say " you deserve a break"</div>
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<i>But guess what happens when you do take a break??</i></h4>
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<span style="font-size: large;">" are the kids going to be ok?"</span></blockquote>
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<span style="font-size: large;">"who's going to look after them??"</span></blockquote>
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<span style="font-size: large;">"do you really think you should???"</span></blockquote>
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And that's usually from those who are <i><b>SUPPORTIVE</b></i>.<br />
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I've never heard someone saying these things to a mama in an allistic home.</div>
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Never heard someone making Mom feel guilty for taking a spa day.</div>
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"good for you girl, you deserve it!"</div>
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Or a weekend away.</div>
<div style="text-align: justify;">
<br /></div>
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Nor SHOULD someone make a Mom feel guilty for looking after her own well being. How else can you be the best Mom you can be, unless you <i>TAKE CARE OF YOURSELF</i>?</div>
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But if an Autism mama takes her own mental and emotional health seriously and gives herself a break, she is <b>JUDGED</b>.</div>
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You say how wonderful a parent I am, dealing with SO MUCH, yet you insinuate I'd leave my children without adequate supports. </div>
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You say I deserve a break, yet passive aggressively jab me with a thousand guilt inducing barbs.</div>
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<br /></div>
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You question directly, and very likely also behind my back, whether I am making sound parenting decisions. </div>
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Hmmmm, the "blame the mama for the gasp, horror that is autism" game, only veiled in the cloak of false concern.</div>
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<span style="font-size: large;">And oddly, no one does this to an Autism Daddy.</span></h4>
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<span style="font-size: large;"><b>NO ONE!</b></span><br />
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For too long autism was assumed to be mom's "fault". A lot of society still harbours that attitude deep inside, even those who hide behind "enlightened" exteriors. </div>
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Rather than "blaming" mom for somehow "causing" their child to be autistic, now they adjust their language. </div>
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Pity her. </div>
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Then second guess her personal and parenting choices.</div>
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So, let's get some things straight.<br />
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<li><span style="font-size: large;">Autism is NOT the end of the world.</span></li>
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<li><span style="font-size: large;">I and most other Autism Moms do NOT want your pity. </span><span style="font-size: large;">Because there is NOTHING to pity us for.</span> </li>
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<ul>
<li><span style="font-size: large;">Autism is not "<i>CAUSED"</i> by parenting choices. Autism is a neurological variation. Plain and Simple.</span></li>
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I'm a visual learner, you're a hands on learner.<br />
<br />
That is an example of a neurological difference.<br />
<br />
I don't pity your Mom because she has a child who needs to learn hands on. That's ridiculous.<br />
<br />
Don't pity me because my child is autistic. Show sympathy and caring for my child, for all they have to endure in a society not set up for them. Show support and compassion for me in the battles I wage to get my child everything they need.<br />
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<span style="font-size: x-large;">But most of all, understand.</span><br />
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<span style="font-size: large;">I am a MOM</span><br />
<br />
<span style="font-size: large;">Like any other MOM</span><br />
<br />
And yes, sometimes I will need a break. Maybe more often than "every other mom" because of the battles I am constantly fighting trying to get society to see my child as a person, not a burden<span style="font-size: large;">. </span><br />
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Why not give me one less battle to fight. Stop seeing my child as a "burden", and stop JUDGING me!<br />
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<span style="font-size: large;">See my child not as a thing, but as a <b>PERSON.</b></span><br />
<br />
<span style="font-size: large;">See my family as a <b>FAMILY</b>.</span><br />
<br />
<span style="font-size: large;">See ME as a <b>MOM</b>.</span><br />
<br />
And grant me the understanding you grant all other Moms.<br />
<br />
NOT the judgement, blame, and tsk-tsk-ing you reserve for Moms like me. Moms proudly running their Autism Household, and knowing when they need to take a break.<br />
<br />
Save that judgement for those who deserve it. For those who still haven't accepted that people are people are PEOPLE, no matter what their differences.<br />
<br />
And if you've ever found yourself questioning or being concerned about a Mom taking a well deserved break simply because they head an Autism Household, than maybe reserve some of that judgement for yourself<br />
<br />
<div style="text-align: justify;">
And with that thought, I bid you adieu. Its time for Margaritas on the beach! </div>
<div style="text-align: justify;">
<span style="font-size: large;"><i>Vacay here I come!</i></span></div>
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<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-rOOzsF53yx4/VS7AH2jS6WI/AAAAAAAAL6A/pbmIY0nlQas/s1600/919136_10151364730721854_1019837702_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-rOOzsF53yx4/VS7AH2jS6WI/AAAAAAAAL6A/pbmIY0nlQas/s1600/919136_10151364730721854_1019837702_o.jpg" height="360" width="640" /></a></div>
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<span style="font-size: large;"><b>Ever found yourself being judged simply for taking a break? recharging? let me know in the comments below.</b></span><br />
<br /></div>
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<script async="" src="//cdn.chitika.net/getads.js" type="text/javascript"></script>Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com1tag:blogger.com,1999:blog-5140377992309987962.post-68377315810137373672015-04-13T20:21:00.001-07:002015-04-13T20:21:09.330-07:00Days of Whine and Rosé: Life In An Autism Household : Made by Mavericks, How a Cup of Coffee Could Change the World<a href="http://daysofwhineandrose.blogspot.ca/2015/03/made-by-mavericks-how-cup-of-coffee.html?m=0">Days of Whine and Rosé: Life In An Autism Household : Made by Mavericks, How a Cup of Coffee Could Change the World</a><br />
<br />
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</div>');}());</script><script async="" src="//cdn.chitika.net/getads.js" type="text/javascript"></script>Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com0tag:blogger.com,1999:blog-5140377992309987962.post-36031608001679694432015-03-20T14:24:00.001-07:002015-03-20T14:24:29.272-07:00Made by Mavericks, How a Cup of Coffee Could Change the World<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-3UErAYJqylE/VQyB15lqsbI/AAAAAAAAK8c/hHhm3N0Rhk0/s1600/20141207102530-Beecher.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-3UErAYJqylE/VQyB15lqsbI/AAAAAAAAK8c/hHhm3N0Rhk0/s1600/20141207102530-Beecher.jpg" height="216" width="640" /></a></div>
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<span style="color: #444444;">How Could A Cup of Coffee Change the World? </span></h2>
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<i>Let me Introduce you to Made By Mavericks</i></div>
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<i>Made by Mavericks is actually an off shoot of a fabulous co-operative that has been successfully training people with developmental disabilities for careers in the food services industry for the last 14 years. However, </i><a href="http://commongroundco-op.ca/" target="_blank"><i>Common grou</i><i>nd cooperative </i></a> does much more than train. I included Common Ground, and their various projects in a <a href="https://www.linkedin.com/pulse/20141017183557-98043162-make-your-holiday-party-expense-account-matter-catering-with-awareness?trk=mp-reader-card" target="_blank">Linkedin</a> post about caterering with awareness in the Toronto area.</div>
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<iframe allowfullscreen="" frameborder="0" height="281" mozallowfullscreen="" src="https://player.vimeo.com/video/113856442" webkitallowfullscreen="" width="500"></iframe> <br />
<a href="https://vimeo.com/113856442">AUTISM GROWS UP: Common Ground Co-Operative</a> from <a href="https://vimeo.com/user1754293">Gerald Patrick Fantone</a> on <a href="https://vimeo.com/">Vimeo</a><br />
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<a href="http://3.bp.blogspot.com/-esGh6bj_1rA/VQyJ2q3ZB7I/AAAAAAAAK9A/0rzU-OEEysE/s1600/1888966_854879657910363_7798983877682669166_o.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://3.bp.blogspot.com/-esGh6bj_1rA/VQyJ2q3ZB7I/AAAAAAAAK9A/0rzU-OEEysE/s1600/1888966_854879657910363_7798983877682669166_o.jpg" height="160" width="200" /></a></div>
<span style="font-family: inherit;">Common Group is an excellent program for people with developmental challenges, and, to risk sounding like "Bill and Ted", an even More EXCELLENT caterer. In 2013, the Coffee Shed at Surrey Place Centre, one of Common Grounds coffee shops, purchased a manual espresso press, challenging for even the most dexterous. An extensive training program was implemented and soon the barrista art was MASTERED. People raved about the coffee. By 2014, eight baristas had graduated from the program and profits at The Coffee Shed soared.</span><br />
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<a href="http://4.bp.blogspot.com/-G2NhYqG9GmI/VQyMhJ_Wy7I/AAAAAAAAK9M/sGSYlMhias4/s1600/11034293_871856936212635_231166147740302830_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-G2NhYqG9GmI/VQyMhJ_Wy7I/AAAAAAAAK9M/sGSYlMhias4/s1600/11034293_871856936212635_231166147740302830_n.jpg" height="320" width="320" /></a></div>
<span style="background-color: white; color: #2a2a2a; font-family: inherit; font-size: large; line-height: 26px;">So whats next? </span><br />
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<span style="font-family: inherit;"><span style="background-color: white; color: #2a2a2a; font-size: 16px; line-height: 26px;">MADE BY MAVERICKS aims to expand the program. They launched a highly successful <a href="https://www.indiegogo.com/projects/made-by-mavericks" target="_blank">IndiGoGo</a> campaign and are currently the favourites to win the </span><span style="background-color: white; color: #2a2a2a; font-size: 16px; line-height: 26px;">"Start Something With Alesse" contest ( Vote for Made By Mavericks </span><a href="http://www.startsomethingwithalesse.ca/" style="font-size: 16px; line-height: 26px;" target="_blank">HERE</a><span style="background-color: white; color: #2a2a2a; font-size: 16px; line-height: 26px;"> until midnight ET March 24, 2015 to help them win the $5000 funding for their initiative!). </span></span><br />
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<span style="background-color: white; color: #2a2a2a; font-family: inherit; font-size: 16px; line-height: 26px;">In the words of Made By Mavericks themselves: </span><br />
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<blockquote class="tr_bq" style="box-sizing: border-box; margin: 0px 0px 15px;">
<i><span style="font-size: large;">Our business partners, their families and the wider community will all benefit directly from this initiative. Partners will gain confidence, skills, valuable workplace interaction, and the ability to live independently. Their engagement in meaningful commercial activity positively impacts the local economy. It also provides an opportunity to increase the visibility of this often-overlooked section of the community and to educate the public on the potential for creative and positive forms of social inclusion.</span></i></blockquote>
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<b><span style="font-family: inherit;">Next time you're craving one of those expensive coffee extravaganzas from your favourite chi chi shoppe, why not warm your heart as well, and head to The Coffee Shed and have your latte Made By A Maverick!! </span></b><br />
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<b><span style="font-family: inherit;">Want to know how to find The Coffee Shed?</span></b><br />
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<script async="" src="//cdn.chitika.net/getads.js" type="text/javascript"></script>Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com1tag:blogger.com,1999:blog-5140377992309987962.post-52560326749692154842015-03-20T13:10:00.000-07:002015-03-20T13:10:56.937-07:00Nope, I Didn't Disappear!<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-hzV_R45I57M/VPyEYBao6GI/AAAAAAAAKxw/6xgNpep7yZ8/s1600/calendar%2Btoo%2Bbusy.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-hzV_R45I57M/VPyEYBao6GI/AAAAAAAAKxw/6xgNpep7yZ8/s1600/calendar%2Btoo%2Bbusy.jpg" height="280" width="400" /></a></div>
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<h2>
<span style="color: #444444;">Like every other home, Autism Households can get a bit busy at times, and I haven't been able to write as much as I would have liked. But oh the shenanigans, projects and family drama this house has seen over the last month!! </span></h2>
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<span style="color: #444444; font-size: large;">My home has been abuzz for the last while, so hopefully you'll forgive my lack of posts recently. </span></h4>
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<span style="color: #444444; font-size: large;">Here's what Days of Whine and Rosé been up to!!</span></h4>
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<span style="color: #444444; font-size: large;"><u>Dee Gordon:</u></span><br />
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<span style="color: #444444;">Dee is a fierce and proud autism mama like moi. But unlike moi, who let's her fingers do the talking, Dee let her feet do the walking and </span><a href="https://www.facebook.com/groups/WalkToOttawa" target="_blank">Walk to Ottawa</a> <span style="color: #444444;">was</span> <span style="color: #444444;">born</span>.<br />
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<a href="http://3.bp.blogspot.com/-6mTQXu1D7mY/VLv5YiZwSlI/AAAAAAAAJew/WywMy0-lhTs/s1600/10933754_10152664452197404_4767260857785279634_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-6mTQXu1D7mY/VLv5YiZwSlI/AAAAAAAAJew/WywMy0-lhTs/s1600/10933754_10152664452197404_4767260857785279634_n.jpg" height="150" width="200" /></a></div>
<span style="color: #444444;">Dee walked over 500kms from her home in Etobicoke, Ontario to Canada's capital, Ottawa. Yes. WALKED. Dee's goal was to raise awareness and help push the Canadian Parliament</span><span style="color: #444444;"> to adopt a nation wide standard of services for autistic individuals and their families. Currently what you get depends on where you live, not on what you need. I found out about Dee's mission and though I couldn't WALK with her, I did my best to spread the word. Dee blows my mind!! Yes, she made it to Ottawa. Yes she got an audience with influential politicians. And Yes, her petition for a pan Canadian autism service model is STILL garnering signatures. But guess what? She's not done yet!! </span><br />
<span style="color: #444444;">Things are still in the planning stages, but it looks to be a wonderful next step in Autism acceptance, services and strategies within Canada. Keep an eye on her Walk to Ottawa page as well as this blog for further info when its available!</span><br />
<span style="color: #444444;">In Dee's words:</span><br />
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<span style="color: #444444;"><i>Walk to Ottawa Jan 15th-29th,2015 500+km Raised awareness, education & gathered signatures asked the Federal government 4a Pan-Canadian ASD strategy now what?<span style="background-color: #f6f7f8; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 15.3599996566772px; white-space: pre-wrap;">We are about to change Canadian history. Are you excited? Together we can make a difference </span><span style="background-color: transparent; font-family: Helvetica, Arial, lucida grande, tahoma, verdana, arial, sans-serif;"><span style="line-height: 15.3599996566772px; white-space: pre-wrap;">We need to reach out to all provinces. People (can ) email us with their interest & provinces / territory</span></span></i></span></blockquote>
you can email Dee <a href="mailto:walktoottawa@gmail.com" target="_blank">here</a><br />
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<u><span style="font-size: large;">I Don't Need A Cure:</span></u><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJUdhieTSHJ6hmBXz478y1lZFu2WJQFRSX9rXliCd5YY6z-jerjYMEw-57kIThPvAzgDGKJZXN7pnt7g7nyPmpvwS9or3JBDHviyfpwIbDmV4cUNNPtboSIN4KIeK7KaRVp5wtYHc90Zog/s1600/10950719_1407014516268336_6717235952267052594_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJUdhieTSHJ6hmBXz478y1lZFu2WJQFRSX9rXliCd5YY6z-jerjYMEw-57kIThPvAzgDGKJZXN7pnt7g7nyPmpvwS9or3JBDHviyfpwIbDmV4cUNNPtboSIN4KIeK7KaRVp5wtYHc90Zog/s1600/10950719_1407014516268336_6717235952267052594_n.jpg" height="150" width="200" /></a></div>
<span style="text-align: justify;">I am sure, if you are reading this blog, that you are very likely Autism Positive. You understand that autism is indeed pervasive in that it is part and parcel of every aspect of the autistic person. The "bad stuff" is not really autism at all, but challenges with anxiety disorders, sensory processing difficulties, or communication. Put aside the fact that as autism is genetic, there cannot be a cure and examine why someone would not want to be cured if indeed it were possible. The very attributes that make an autistic person "odd" in society's eyes are also the very attributes that make them special, and add great value to this big old world of ours. Hyper focusing on a particular subject may seem annoying, or may seem to limit the persons ability to "join" the world, but it is just that hyper focus that gives us advances in science, technology, the arts, theology, you name it. Being hyper sensitive to the world around them may make them unable to cope in certain situations, but it also gives them an uncanny empathy. To eliminate what is considered a detriment would also eliminate their greatest gifts. It is not a "cure" that is needed. It is acceptance. I started work on the I Don't Need A Cure Flashblog after a world wide brainstorming session about another matter. It is receiving wonderfully great attention, and I am very proud of it, but as its in its inaugural phase, it is taking up quite a bit of my time, making it difficult to sit down at the keyboard to just "write".</span><br />
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I am very proud of "I Don't Need A Cure" and would be thrilled if you checked out the site, and even more thrilled if you contributed and/or shared!!</div>
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click below to find the main page!<br />
<a href="http://idontneedacure.blogspot.ca/" target="_blank">I Don't Need A Cure Autism Flashblog</a><br />
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<span style="font-size: large;"><u>Life</u></span><br />
<u style="font-size: x-large;">Yeah, Life:</u><br />
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Life has a crazy mixed up way of just happening all around you even if you don't have time for it. And in our household over the last 2 months we've had an excess of life, and death, and stress, and stress tests, and illness, and heart attacks, and broken legs, and (insert adjective expletive) exes causing (insert noun expletive), and triumphs, and setbacks, and anxiety disorder hell, and legal issues, and more stress and yadda yadda yadda. The load was quite a lot to bear (especially with a 17 year old son deciding to dive into the role of a typical 17 year old) so I had to take a step back. I had to find something to cut back on in order to keep functioning everywhere else. What I forgot was that writing has been my outlet, my relaxation, my SPACE. So I'm back!! Hope you missed me, 'cause I sure missed you!</div>
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<span style="font-size: large;"><u>Friends in Trouble:</u></span><br />
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The family of a wonderful close friend recently experienced an horrific trauma. Sydney, a young woman with so much promise, was run over by a military vehicle while out jogging in Morocco. Sydney was simply studying abroad, when everything was shattered. The driver was jailed, but the Moroccan government has done little to help Sydney or her family. Its really challenging to sit and write about my trivilties knowing a good friend and her family have been going through so much. I set up a Facebook page to help bring awareness to this horrible accident, and to help raise funds to bring Sydney home from Morocco. You can find the Facebook page <a href="https://www.facebook.com/pages/Justice-for-Sydney/664986206943059" target="_blank">here</a> </div>
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<u><span style="font-size: large;">Work:</span></u><br />
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Shockingly, I do not make a living writing. I do however have a pretty au-some job. Years ago, when Eric was diagnosed, I trained in ABA and SPD. I found I was actually quite intuitive when it came to assisting and supporting those with various challenges, including those non verbal and aggressive, and that they were able to bond with me quickly and find ways to communicate with me. I found I liked supporting people with special needs, and that I am good at it. I am lucky enough to ENJOY my work, and get way more out of it than I give. Because my work is not <i>work</i>, its people, glorious, fabulous AU-SOME people! </div>
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But over the last few months I've had to miss a lot of work. (See LIFE above) So I have been struggling financially, but worse, emotionally. I hadn't realised just how much I actually do <i>GET</i> from my work. Personally. On a very deep level. </div>
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I am so glad to be back at it, back with some pretty fabulous people, and being reminded just how extraordinary this world can be when you look past your own troubles. </div>
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<span style="font-size: large;"><u>Puppy Love</u></span><br />
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We got a Puppy. I don't think I need to explain to anyone who has a dog why that's kept me busy. </div>
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To those who don't have a puppy, five words. Pee Poop & Chewed Up Everything. </div>
ALL THE TIME.<br />
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(and yeah, this section was solely added to enable me to show off my sweet Coco!!)</div>
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<span style="font-size: large;"><u>LONG LONG WINTER</u></span><br />
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<a href="http://1.bp.blogspot.com/-ZdfO_94pNXg/VQx9UaQifKI/AAAAAAAAK8I/u3zLytdhztw/s1600/10838051_10152916938308454_973541572466792353_o.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-ZdfO_94pNXg/VQx9UaQifKI/AAAAAAAAK8I/u3zLytdhztw/s1600/10838051_10152916938308454_973541572466792353_o.jpg" height="154" width="320" /></a></div>
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Like everyone else, this winter seems to have flicked on the hibernation switch in me. I haven't gone dancing, haven't gone to the art gallery or the museum. Heck, getting out for groceries seems like an insurmountable task (thank heavens for on-line grocery stores!!). But today is officially the first day of spring, and so please see this post, not so much as a "Why I've been gone" post, but as a farewell, glad you're leaving note to winter!!</div>
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<span style="font-size: large;">So glad to be back at it, and so sorry to have gone away at all! </span></div>
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<span style="font-size: x-large;"><b>XOXOXO</b></span></div>
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<span style="color: #444444;"><br /></span>Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com1tag:blogger.com,1999:blog-5140377992309987962.post-52836279622265011442015-02-09T10:53:00.000-08:002015-02-10T12:29:11.455-08:00The Anti-Vax Bully Boogie<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-H8xx2B-pGUQ/VNjhnBZaTxI/AAAAAAAAKFQ/F9OO_OdZDjs/s1600/ZomboDroid09022015111031%2B(2).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-H8xx2B-pGUQ/VNjhnBZaTxI/AAAAAAAAKFQ/F9OO_OdZDjs/s1600/ZomboDroid09022015111031%2B(2).jpg" height="640" width="640" /></a></div>
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<span style="color: #444444;">I write op/ed. </span></h4>
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<span style="color: #444444;">Opinions. Editorials. </span></h4>
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<span style="color: #444444;">When you have strong opinions you also (<i>hopefully</i>) accept that others can have equally strong, and possibly differing opinions. </span></div>
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<span style="color: #444444;">Oh, how I love a good debate. </span></div>
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<span style="color: #444444;">If you can change <i>my</i> mind on something, fabulous!! If I change <i>your</i> mind. fabulous!! If we both walk away unchanged in our opinions, but feeling even more resolved about those opinions, even more fabulous.</span></div>
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<span style="color: #444444;">Because no one wants to be a sheep. </span></div>
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<span style="color: #444444;">One subject I have been vocal about for decades is vaccination. I am pro-vax. Always have been. </span></div>
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<span style="color: #444444;">Over the years, I have noticed that something interesting happens if I write, or "reshare", anything about vaccinations. Even something innocuous.</span></div>
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<span style="color: #444444;">The anti-vax bullies come out. </span></div>
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<span style="color: #444444;">In full force.</span></div>
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<span style="color: #444444;">I could debate with you why I think the anti-vax stance is dangerous, and unfounded, but that's not what this post is about.</span></div>
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<span style="color: #444444;">And not all anti-vaxers are bullies. </span></div>
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<span style="color: #444444;">But you cannot write, or say, a single word about vaccinations without the horde descending. They are fanatical. And you encounter them in every possible forum.</span></div>
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<span style="color: #444444;">Back in October of 2014 I posted to Linkedin, a professional network, an interesting <a href="http://imgur.com/p7WZs2u?tags" target="_blank">letter</a> I found on Imgur from a mom of an immuno-compromised child to anti-vaxers. It was an intelligent, and heart-felt letter (you can find the linkedin post <a href="https://www.linkedin.com/pulse/20141016124551-98043162-excellent-open-letter-to-non-vaxers" target="_blank">here</a>). Linkedin is a PROFESSIONAL networking site. The post was shared amongst groups on Linkedin. In the "Teachers" group the attacks on me PERSONALLY for sharing this post were horrific. For simply sharing. I was told that there was "no way in hell you should ever be allowed near a child", I was messaged privately and threatened, I was called every vile name possible. ON A PROFESSIONAL SITE BY PEOPLE WHO THINK OF THEMSELVES AS PROFESSIONAL WHO TEACH OUR CHILDREN. I was flabbergasted. Stunned. Wounded. No reasonable debate. Just attacks. </span></div>
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<span style="color: #444444;">I sought out solace from fellow authors and found out this is actually exceedingly common. Whenever people group together, share in something they identify with, there will be fanatics. But the Anti-vaxer fanatic seems to be a breed unto themselves. </span></div>
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<span style="color: #444444;">And they have a dance. </span></div>
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<span style="color: #444444;">Yup, their very own dance.</span></div>
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<span style="color: #444444;">Its a 3 step dance, followed up with the "dip" , the grand finale. </span></div>
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<span style="color: #444444;">If you ever write, share a post, or heaven forbid share an opinion on vaccination that differs from theirs, you will be treated to the dance. Don't take it personally. Don't let the dance hurt you. Simply see it for what it is. A Bully Boogie.</span></div>
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<span style="color: #444444;"><b>So, how <i>DOES</i> an anti-vaxer boogie?</b></span></div>
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<span style="color: #444444;">A pro vaccination comment gets them up on the floor, rapidly. Then the dance begins. Some dance simply, some with lots of flourishes, but all are very predictable</span></div>
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<span style="color: #444444;"><u><i>Left foot forward..........</i></u></span></div>
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<span style="color: #444444;">The first step is to cite some scientific "fact" that vaccines are harmful. Cause autism. Whatever.</span></div>
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<span style="color: #444444;">These "facts" are easily debunked, because, well, they're not facts. The statements are simply not true, cannot be verified or proven, and the opposite can EASILY be proven. </span></div>
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<u><i><span style="color: #444444;">Left foot back...............</span></i></u></div>
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<span style="color: #444444;">Next comes Personal freedom. The "this is MY choice" argument. But they only support personal freedom if its THEIR personal freedom. Their actions (or choice of inaction) imposing on others personal freedom, safety and even the very lives of others is not allowed to be discussed. Ever. </span></div>
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<u><i><span style="color: #444444;">Slide to the side.............</span></i></u></div>
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<span style="color: #444444;">After the Personal Freedom step comes the "Big Pharma" , or "Big Brother/Government" conspiracy theories (or the ever fabulous "Government in <b>Cahoots</b> with Big Pharma" conspiracy theory). This step is the most fun to watch. Quite entertaining. Once you start letting your inner conspiracy theorist show, well, frankly, you add more validity to the OTHER opinion. And you give us a good giggle too.</span></div>
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<span style="color: #444444;">But then, wait for it, just like in some old 1940's musical, the dance comes to an end, with the dip.</span></div>
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<span style="color: #444444;">The Dip.</span></div>
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<span style="color: #444444;">Sigh</span></div>
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<span style="color: #444444;">With Fred Astaire and Ginger Rogers it is an elegant end to a beautiful dance.</span></div>
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<span style="color: #444444;">With anti-vaxers, its more like a dipstick. Covered in toxicity. </span></div>
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<span style="color: #444444;">Sometimes they get so excited in their Bully Boogie that they skip steps and head straight to the dip. </span></div>
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<span style="color: #444444;">Meghan Duff,author of the wordpress blog "A Christian Aspie Perspective" and a wonderful autistic self advocate, recently wrote an open letter to anti-vaxers. Directed in particular at those who use the ridiculous BS that vaccines "cause" autism. </span></div>
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<i><span style="color: #444444;"><span style="font-family: Verdana, sans-serif; font-size: x-small;">Let me introduce myself. I am a 21 year old woman. I’m currently studying forensic science in college. I have a passion for science (particularly chemistry), reading, and video games. But above all else, I am autistic<span style="background-color: transparent;">....... </span>One of my friends who is also on the autism spectrum, Teighlor Fiddler, sums up what your view says to us on the spectrum well. She says, of those who are against vaccines, that “They rather have dead children than have children like me”. That is exactly what your fight against vaccines (as a result of the “vaccines cause autism” argument) says to those on the spectrum. That you, as parents, would prefer that your child be dead or have a serious disease than have autism...........Stop and think about that for a moment. It tells us on the spectrum that autism is a fate worse than death or crippling disease......How are we supposed to feel about that, knowing that there are a growing number of parents out there that think that we are worse off than those who are dead? What does that say to us? That we are horrible, worthless, and a waste of space. It does not make us feel hopeful about our future. It makes us feel judged and misunderstood by society. I cannot even begin to put into words how awful this makes me feel, to know that there are parents out there who consider someone like me to be someone who is living a life that is worse than death. </span><a href="https://achristianaspieperspective.wordpress.com/2015/02/07/an-open-letter-to-anti-vaxxer-parents-from-an-autistic-woman/" style="font-family: Verdana, sans-serif; font-size: small; font-weight: inherit; line-height: 1.15;" target="_blank">An Open Letter to Anti-Vaxxer Parents from an Autistic Woman</a></span></i></blockquote>
<span style="color: #444444;">Let the Bully Boogie begin. She was attacked. Mercilessly. One woman, trying to sound as if she WASN'T saying Autism is worse than the risk of death, responded with the following.</span><br />
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<span style="color: #444444;">Guess what? You <i><b>are</b></i> saying autism is a disease. You <i><b>are</b></i> saying that something is WRONG with autistic people (and remember this is a DIRECT response is to a letter WRITTEN by an autistic woman). You <i><b>are</b></i> saying you'd rather place your child (and everyone your child comes in contact with) at risk for a very REAL possibly deadly disease than to research and see your fear is unfounded, but worst of all because being autistic would be WORSE. Nice lady. Very nice. </span></div>
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<span style="color: #444444;">But for a change of pace, I'm going to get off my Autism Advocacy high horse and show you anti-vaxers don't discriminate. They bully those who disagree with them even if they <i>AREN'T</i> part of the autism community.</span></div>
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<span style="color: #444444;">I met Katherine Hollinsworth when a mutual friend's jazz band was ending its long term gig at a local hotel. She is bright, funny, and unpretentious. We get along like gangbusters. Katherine, like so many of us, was horribly upset by the needless measles outbreak recently in the States (which continues to expand). On her personal facebook wall she wrote of her concerns, implored those who have an anti-vaccination stance to research. </span></div>
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<i><span style="color: #444444;">each one of the fabricated scares has been dis-proven, so if you only read the myths, it behoves you to do the research and get up-to-date, follow up information</span></i></blockquote>
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<span style="color: #444444;">The private messages and public comments started immediately. Mentioning vaccinations seems to send out something into the stratosphere that draws them in like a magnet. SIXTEEN pages of comments, most with links to "natural news dot com" and "mercola" and many other story-telling-but-passing-off-as-facts sites (S<i>eriously?</i> people <i>STILL</i> don't know to check validity of an article or website with <a href="http://www.snopes.com/" target="_blank">Snopes</a> ?). <a href="http://en.wikipedia.org/wiki/Water_fluoridation_controversy" target="_blank">Flouride-gate</a> comments competed for attention. And the attacks. Personal, revolting attacks. On a woman most would find far from reproach. For simply stating, on her own personal facebook wall, her own personal opinion. </span><br />
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<span style="color: #444444;">The Anti-Vaxxer Bully Boogie. Sigh. Any refutation of their assertions, with facts, REAL FACTS, calls forth from anti-vaxxers the most vile-mouthed, abusive, vitriol-laced sputum. Yes, when you have other at-odds parties you will find bullies. But no where near to the extent as in the anti-vax community. And you just can't have the Anti-Vax Bully Boogie without the "dip" (or dipstick). </span><br />
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<span style="color: #444444;">So next time an anti-vaxer starts to boogie with you, don't concern yourself. Just sit back, relax and wait for #thedip. Nothing infuriates an anti-vaxer more than you refusing to dance with them.</span><br />
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<span style="color: #444444;">Let the Bully Boogiers now hit the floor</span><br />
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<span style="color: #444444;">For Meghan's open response to the comment pictured above please read her post </span><br />
<span style="color: #444444;"><a href="https://achristianaspieperspective.wordpress.com/2015/02/10/there-is-nothing-wrong-with-me/" target="_blank">There is NOTHING Wrong with me!</a></span><br />
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Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com4tag:blogger.com,1999:blog-5140377992309987962.post-63764648314130815152015-01-18T12:01:00.001-08:002015-01-18T12:59:55.948-08:00Pan Can Autism<div class="separator" style="clear: both; text-align: center;">
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<span style="color: #444444;">What would be your idea of a great way to spend a cold, wet dreary January day? Breakfast in bed maybe? Reading a good book by the fire? Enjoying wonderful comfort food with a glass of fine wine? </span></div>
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<span style="color: #444444;">How about going for a walk. </span></div>
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<span style="color: #444444;">A long walk.</span></div>
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<span style="color: #444444;">Like a more than 450km walk.</span></div>
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<span style="color: #444444;">That's what Dee Gordon of Etobicoke Ontario is doing, right this very moment.</span></div>
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<span style="color: #444444; font-size: large;">Why?</span></div>
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<span class="text_exposed_show" style="display: inline;"><span style="color: #444444;">"I am planning to walk from the my home January 2015 to the Ontario Legislature Queen's Park, Toronto to Parliament Hill in Ottawa to raise awareness of ASDs, and to push for a pan-Canadian strategy for ASDs, as was recommended by the Senate in its 2007 report, “Pay Now or Pay Later”</span></span></h4>
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<span style="color: #444444;"><span style="font-family: Helvetica, Arial, lucida grande, tahoma, verdana, arial, sans-serif;"><span style="line-height: 15.3599996566772px;">What does this mean? What exactly is Dee hoping to accomplish? Aren't there all sorts of things set up to assist autistic people succeed, to help their families, to educate the public? Well, yes and no. Christopher Medeiros recently wrote a <a href="http://daysofwhineandrose.blogspot.ca/2015/01/the-evolution-of-autism-awareness-over.html" target="_blank">Days of Whine and Rosè article</a> demonstrating the vast changes in autism awareness and acceptance over the last century. Yes, things have come a long way. But there are still huge gaps in what SHOULD be available, and for WHOM, and what is actually out there.</span></span></span><br />
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<span style="color: #444444;"><span style="font-family: Helvetica, Arial, lucida grande, tahoma, verdana, arial, sans-serif;"><span style="line-height: 15.3599996566772px;">Currently, service availability and delivery (and in actual fact WHAT services are deemed appropriate) are decided at Provincial/Territorial/First Nations level. Which means what services are offered depend on where you live in this vast great country of ours. Autism households in Alberta, Nunavit, Newfoundland, or on a First Nations reserve each have different funding resources and services. And to some extent that is fair. They are living in entirely different terrains and socio-economic cultures. But what a family and an autistic person needs to thrive at their basis are the same. It is the delivery of these services that needs to be adjusted according to community. </span></span></span><br />
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<span style="color: #444444;"><span style="font-family: Helvetica, Arial, lucida grande, tahoma, verdana, arial, sans-serif;"><span style="line-height: 15.3599996566772px;">In 2007 The Canadian Senate convened a committee to create a special report on Autism services and delivery. Titled "Pay Now or Pay Later"</span></span></span><br />
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<span style="color: #444444;"><span style="font-family: Helvetica, Arial, lucida grande, tahoma, verdana, arial, sans-serif;"><span style="line-height: 15.3599996566772px;"> </span></span><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; text-align: start;">The Committee has called on federal/provincial/territorial governments to collaborate on</span><acronym style="border-bottom-style: none; cursor: text; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; text-align: start;" title="Autism Spectrum Disorders">ASD</acronym><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; text-align: start;"> </span><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; text-align: start;">treatment. While the federal government supports Canada's capacity to address the special needs of children, including those with autism, provincial/territorial governments are responsible for delivering health and social services within their respective jurisdictions, with some exceptions for service provision to selected populations, including First Nations and Inuit. To assist provincial/territorial government to deliver these services, the federal government contributes funding through the Canada Health Transfer (</span><acronym style="border-bottom-style: none; cursor: text; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; text-align: start;">CHT</acronym><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; text-align: start;">) and the Canada Social Transfer (</span><acronym style="border-bottom-style: none; cursor: text; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; text-align: start;">CST</acronym><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; text-align: start;">) respectively. Provincial and territorial governments also have exclusive jurisdiction over primary and secondary education. More specifically, this provincial/territorial role includes responsibility for the allocation of jurisdictional resources to treatments for specific disorders and conditions. </span></span></blockquote>
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<span style="color: #444444;"><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; text-align: start;">In terms of funding through the</span><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; text-align: start;"> </span><acronym style="border-bottom-style: none; cursor: text; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; text-align: start;" title="Canada Health Transfer">CHT</acronym><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; text-align: start;"> </span><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; text-align: start;">and the</span><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; text-align: start;"> </span><acronym style="border-bottom-style: none; cursor: text; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; text-align: start;" title="Canada Social Transfer">CST</acronym><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; text-align: start;">, Canada's New Government is supporting renewed equalization. Providing $1.5</span><abbr style="border-bottom-style: none; cursor: text; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; text-align: start;" title="billion">B</abbr><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; text-align: start;"> </span><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; text-align: start;">more in 2007/08 than last year, the Government of Canada is supporting fair treatment of Canadians in all parts of the country and enabling provinces and territories to provide their residents with comparable levels of services at comparable levels of taxation. All Canadians will benefit from provincial and territorial governments being well-equipped to invest in health care, post-secondary education, modern infrastructure and social programs. Moreover, through the 2004 Health Accord, the Government of Canada is providing provinces and territories with an additional $41.3</span><abbr style="border-bottom-style: none; cursor: text; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; text-align: start;" title="billion">B</abbr><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; text-align: start;"> </span><span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; text-align: start;">to support enhanced access to quality health services. </span></span></blockquote>
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<span style="color: #444444; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; text-align: start;">With respect to First Nations and Inuit health and social services, the Government of Canada supports the provision of supplementary health benefits, the delivery of public health and health promotion services, and the provision of primary care services on-reserve in remote and isolated areas, where there are no provincial services readily available. The Government of Canada is actively engaged in efforts to enhance First Nations involvement in the delivery of health services, and to promote better integration and coordination of federally and provincially funded services.</span></blockquote>
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<span style="color: #444444;">In other words, the federal government would assist the various provincial and territorial governments, with special assistance for first nations territories, to provide a uniform level of service availability, and indeed services period, across the country. </span><br />
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<span style="color: #444444;">So why, 8 years later, is this not happening?</span><br />
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<span style="color: #444444;">Some recommendations from this report have actually been instituted. One, nearly completed and receiving both rave reviews and great criticism, is the National Autism Surveillance Program:</span><br />
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<span style="color: #444444;"> <span style="font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; line-height: 1.3em; text-align: start;">We know that better information is needed to help Canadians address the health, social and other impacts of Autism Spectrum Disorder. That’s why, through the Public Health Agency of Canada, the Government is building a national surveillance system of developmental disorders, with an emphasis on ASD. This system will provide the important data needed to improve policies and programs for Canadians living with ASD, and their families. </span><i><a href="http://www.phac-aspc.gc.ca/about_apropos/2014/2014_04_02-eng.php" target="_blank"><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; line-height: 16.6399993896484px; text-align: start;">The Honourable Rona Ambrose, </span><span style="background-color: white; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 13px; line-height: 1.3em; text-align: start;">Minister of Health,; April2,2014</span></a></i></span></blockquote>
<span style="color: #444444; font-family: inherit;">However we still do not have a Pan Canadian ideal of exactly what services should be provided, and to whom.</span><br />
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<span style="color: #444444; font-family: inherit;">THAT is what Dee Gordon is hoping to change. And why she is out <a href="https://www.facebook.com/events/756575684391352/" target="_blank">walking</a> over 450kms in the middle of the Canadian winter. Dee's<span style="background-color: white;"> 15 day trek started at Queen’s Park on Thursday, January 15th. She is walking 8 to 12 hours a day, each and everyday, culminating with a march on Parliament Hill on January 29</span><sup style="background-color: white;">th</sup><span style="background-color: white;">. </span></span><br />
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<span style="color: #444444;">Dee wrote in regards to her walk:</span><br />
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<span style="background-color: white; color: #444444; font-family: inherit; font-size: 12pt;">In addition to raising awareness, I am collecting signatures to petition the government for a National Strategy for Autism. The petition calls on the government to implement the recommendations of the Standing Senate Committee on Social Affairs, Science and Technology’s 2007 report on ASD Pay Now or Pay Later. Among others, the recommendations call for therapy, respite care, research and more.</span></blockquote>
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<span style="color: #444444;"><span style="font-family: inherit;">The petition was </span><a href="http://openparliament.ca/debates/2014/12/5/kirsty-duncan-4/" style="font-family: inherit;" target="_blank">presented</a><span style="font-family: inherit;"> to the Speaker of the House on December 5th, 2014. Given a timeslot during the lunch hour, I'm not convinced the 15 second presentation was afforded any recognition at all (although I applaud MP </span><a href="http://openparliament.ca/politicians/kirsty-duncan/" style="font-family: inherit;" target="_blank">Kirsty Duncan</a><span style="font-family: inherit;"> of Erobicoke North for presenting it). A petition asking the government of Canada to follow up on its own recommendations. </span>Petitions<span style="font-family: inherit;"> are helpful, and if you wish to sign, please click <a href="http://www.walktoottawa.org/" target="_blank">here</a>, but we all know if a petition alone could get things accomplished than <i>Grumpy</i> <i>Cat</i> would now be </span><a href="http://www.thepetitionsite.com/996/067/009/clone-grumpy-cat/" style="font-family: inherit;" target="_blank">cloned</a><span style="font-family: inherit;">. So if a petition, and even a Member of Parliament presenting your petition to the House isn't enough to get the government to act, what is? </span></span><br />
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<span style="color: #444444;"><span style="font-family: inherit;">Public Opinion</span></span><br />
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<span style="color: #444444;"><span style="font-family: inherit;">My own grandmother, many many decades ago, also walked on Parliament Hill. She was part of a group of twelve people. "The Friends of Shut Ins". From their march, and pressure from public opinion, what are now the disability tax credits and disability pensions were created. Dee is hoping to garner public opinion to help push the Canadian government to enact their own </span>recommendations. That's where you come in. Follow Dee, share her story, her hopes, contact your MP and ask if they are going to meet with Dee when she marches on Parliament Hill January 29th. </span><br />
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<span style="color: #444444;">Help Dee get Parliament Hill to create a National standard for autism services and awareness. </span><br />
<blockquote class="twitter-tweet" lang="en"><p><a href="https://twitter.com/hashtag/DaysofWhineandRos%C3%A9?src=hash">#DaysofWhineandRosé</a> <a href="https://twitter.com/hashtag/pancanautism?src=hash">#pancanautism</a> <a href="https://twitter.com/hashtag/etobicoke?src=hash">#etobicoke</a> mom walking2 <a href="https://twitter.com/hashtag/ottawa?src=hash">#ottawa</a> 2raise <a href="https://twitter.com/hashtag/autismawareness?src=hash">#autismawareness</a> <a href="https://twitter.com/hashtag/autism?src=hash">#autism</a> <a href="http://t.co/65qe8ZA8Qy">http://t.co/65qe8ZA8Qy</a></p>— Lori Pollard (@torontojazzbrat) <a href="https://twitter.com/torontojazzbrat/status/556918321233158146">January 18, 2015</a></blockquote>
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<span style="color: #444444;"><span style="font-family: inherit;"><br /></span></span>
<span style="color: #444444;"><span style="font-family: inherit;">twitter hashtag #pancanautism</span></span><br />
<span style="color: #444444;"><span style="font-family: inherit;"><br /></span></span>
<span style="color: #444444;"><span style="font-family: inherit;"><a href="https://plus.google.com/109389368590828515228/posts/eVNSexbL9Xo" target="_blank">google</a>+</span></span><br />
<span style="color: #444444;"><span style="font-family: inherit;"><a href="https://t.co/XEipeQnQ2r" target="_blank">linkedin</a></span></span><br />
<span style="color: #444444;"><span style="font-family: inherit;"><a href="http://imgur.com/VDqSMUv" target="_blank">imjur</a></span></span><br />
<span style="color: #444444;"><span style="font-family: inherit;"><a href="https://www.pinterest.com/pin/559501953681823659/" target="_blank">pinterest</a></span></span><br />
<span style="color: #444444;"><span style="font-family: inherit;"><a href="http://redd.it/2suyca" target="_blank">reddit</a></span></span><br />
<span style="color: #444444;">website <a href="http://www.walktoottawa.org/" target="_blank">walktoottawa.org</a></span><br />
<a href="http://www.parl.gc.ca/Parliamentarians/en/members" target="_blank">list of Canadian MPs</a><br />
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<span style="color: #444444;"><i>Here's Dee at sunrise this morning!! (trigger warning, she uses the word affected, but it is not meant in a "curist" vane). </i></span></div>
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<a href="https://www.facebook.com/video.php?v=977702982257985">Post</a> by <a href="https://www.facebook.com/ProCameraGirl">Dee Gordon</a>.</div>
</div>Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com0tag:blogger.com,1999:blog-5140377992309987962.post-18720709541008860742015-01-10T08:18:00.000-08:002015-03-25T14:11:13.545-07:00The Amazing Angela!! A Post For Those Who Ever Wondered What Its Like to Work With "Our Kids"<script type="text/javascript">
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<span style="color: #444444;">Years ago, when my son was attending day respite at <a href="http://autism.net/" target="_blank">The Geneva Centre For Autism</a> we connected with a fabulous worker. Years later I met her again when I was volunteering at GCA in an adult day program. Low and behold, I was working with her cousin. We have stayed in contact because she is just so AU-some!</span></div>
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<span style="color: #444444; font-size: large;">How Au-some is she??</span></div>
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<span style="color: #444444;">She wrote this post on Facebook today. With her permission, I've copied it below. It is wonderful knowing others see our children as spectacular as we do, and knowing that such exceptional people are in our childrens' lives. </span></div>
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(REALLY long post ahead) SO I was going through some very old emails and I just realized that this month, TEN years ago, I started working in the field of Autism Spectrum Disorders (ASD)! My very first volunteer placement from the Geneva Centre for Autism (GCA) was off-site at a little daycare with the sweetest 3-year-old boy, whom I later worked with for 2+ more years doing respite work in the home/in the community. I really cherished my time with this little guy (taking him to Mickey D's and chasing birds mostly) and I immediately fell in love with this field! In my email to the volunteer coordinator at the time, I wrote, "I look forward to a very challenging yet equally, if not more rewarding experience". Well, let me tell you past-Angela, it is the MOST rewarding experience you will EVER have!</blockquote>
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Ten years later, I am still passionate and still in love with this field, more than ever. I cannot even begin to express how much my life has changed and how much sheer joy I have experienced from working in this field and being introduced to the most adorable, incredible, creative, inspirational, amazing, courageous, etc. individuals! Of course, there have been MANY challenges along the way! It wouldn't be so rewarding if it weren’t so challenging, right? Oh, the biting, the kicking, the screaming--so much screaming, the excretion of bodily fluids... But hey, you just learned to love that much harder!</blockquote>
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Being in this field has taught me so much and I know I have grown as a person in ways that I never would have otherwise. I have learned to appreciate (what seems like) the littlest things (like a child responding to their name for the first time), to have patience in the most TRYING moments (ohhh, you know), to laugh after the most spectacular meltdowns (tornados had nothing on this little guy), to keep a straight face for proloooonged periods of time (seriously, so. Much. Screaming.), to have reflexes like a ninja from “bolters” and “projectiles”, to give freely and to love unconditionally.</blockquote>
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I have also learned every song from Blue’s Clues (with actions!), Dora the Explorer, Frozen, etc. and I know more “circle time songs” than any one person should ever know, including made up ones (“ping pong is a game, I like to play ping pong, table tennis is another name for it”)! I have also learned to draw almost any character from Treehouse (quickly and repeatedly), to name every Wiggles/Teletubbies/In the Night Garden/Yo Gabba Gabba/etc. character and to differentiate between Toopy (mouse) and Binoo (cat). I have also learned that accidents happen (now and again, just when you least expect). PS. I still think that song is terrible.</blockquote>
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I have learned to be creative (101 ways to use velcro), to be resourceful, to think on my feet no matter what the situation (hey, remember that time we had to switch activities every 2 mins. for a total of about 90 activities per 3hrs. to eliminate the “boredom” factor? No? Me neither.), and to operationally define almost any behaviour in the most specific of terms (flopping: characterized by the child having 50% or more of his/her body in contact with the ground from a standing or seated position). And I have acronyms coming out of my ears (ABA, IBI, IBISP, BSP, OT, SLP, CPI, etc.)! Need a visual? I’ll make you one using Boardmaker with my eyes closed!</blockquote>
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All the things I have learned and all the things I have loved and still love about the field of ASD is immeasurable! But I have loved it all--every single moment of the last ten years. I look forward to ten more, twenty more, thirty more--forever more! I’m not done with you yet!</blockquote>
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Thanks for reading and sharing in my joy! If you also work in this field, I know you know exactly how I feel. And isn’t it the best thing in the world?</blockquote>
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A couple of years ago during Autism Awareness month, I posted 18 statuses with cute/funny/quirk things that an individual with ASD has said or done. I'm going to re-post them now to mark my Ten Years! Enjoy!</blockquote>
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<span style="background-color: white; color: #141823; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 19.3199996948242px;">1. Walking down the hallway with a kid while he's holding a cup of juice. </span><span style="background-color: white; color: #141823; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 19.3199996948242px;">Me: "What flavour is your juice?"</span><span style="background-color: white; color: #141823; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 19.3199996948242px;">Kid: "Rainbows! It's full of rainbows!"</span></blockquote>
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2. Sometimes during summer camp, one of the kids who had a lot of sensory needs, would sit in a corner with her noise canceling headphones and a colourful scarf over her head while paging through the latest grocery flyer. This was her at her absolute calmest. If you approached her and were lucky enough, she would gently touch your face with the back of her fingers and smile.</blockquote>
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3. This kid's favourite game to play is Hide and Seek. He plays it about 5 times a day (per his "Initiating Play" program). Every time he hides, it's pretty much the EXACT same hiding spot every single time (lying down on the floor under a yoga mat). After you've faked a few "oh, I'm gonna check here" or "did he go home?" and you finally uncover the mat, his expression is that of sheer delight, as if he's never played the game before! (And sometimes while you're counting or searching for him, you can hear him giggling with anticipation and the yoga mat moving ever so slightly from his bells of laughter).</blockquote>
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4. This happened 5 minutes ago. This sweet little kid sneezed beside me while doing a puzzle. She looked up at me for a second as if waiting for something, then said "bless you" loudly, and proceeded with her puzzle.</blockquote>
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5. One of the strategies we use with the kiddos is "first-then" contingency--first do this (demand) then you get this (reinforcement). One of the kids really wanted to play trains so we told him "first lunch, then trains". He replied, "no first--no lunch--no then"!!</blockquote>
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6. One year, we did a production about an evening variety show. This individual's role was a caller, calling in to give shout outs to her whole family, her friends, random celebrities, her hairdresser, her mechanic, etc. During a rehearsal run through, the line she was supposed to say was, "... And hi to Oprah if she's watching, and to those kids from High School Musical..." however, she did a bit of improv and said, "... And hi to Oprah, that big woman on TV..." Ha!</blockquote>
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7. This adorable kid was using pictures with us to communicate (Picture Exchange Communication System). He had a picture that said "tickle" and he requested that pretty frequently. One day, he spontaneously said something that sounded like "kickle" which resulted in cheers and of course, many tickles. I'll never forget his beaming smile and delightful laughter. It was almost as if at that very moment he realized his spoken words had power. Needless to say, he said "kickle" many, many more times that day and for days after.</blockquote>
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8. Individuals with autism sometimes engage in something called, "scripting" (or delayed echolalia), which basically is repeating something that they've heard from movies, tv shows, etc. not directed at anybody in particular (may be self-stimulatory). So one of the kids I used to work with would script all the time--from tv shows, music lyrics, things his mom or teachers said, etc. One day, while doing his work, he just blurted out, "NOW I HAVE A REASON TO BE THIN!" I died.</blockquote>
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9. As some of you know, I have an older cousin with autism. Growing up, he would always peel labels, especially from bottles and cans. We had a lot canned food like beans, corn, and of course, my favourite Spaghetti-Os! One time he came over and when he left, all of our canned food was missing labels and we had no way of knowing what was in the cans! Everytime we opened a can, it was always a surprise! (Later on, my aunt mentioned that they locked all of their canned food in a closet)</blockquote>
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10. Every time this kid would read the book "Polar Bear, Polar Bear, What Do You Hear?", we would hear slow ripping sounds. When we would look over at him, he would look up at us with guilty eyes and stop ripping and pretend to read the book (secretly he was still ripping which was really funny in itself). We soon realized that he was ripping out the eyes of each of the animals in the book! We had no idea why but he just didn't stop until the poor whistling zookeeper at the end was also missing his eyes. This kid left our program a while ago but the current kids continue to read this book everyday, and I can't help but fondly think about him and the legacy he's left us in the form of ripped out eyes.</blockquote>
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11. We've all heard of the old adage: WWJD? Well, this individual goes by another one: WWBS? Which stands for "What Would Buffy Say"?</blockquote>
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12. I worked with the funniest most brilliant boy with Asperger's Syndrome. He had the ummm... delightful gift of "no filter", also, he idolized The Simpsons. One time, we were strolling down a peaceful street and he suddenly yelled really loudly to a group of people on the other side, "GO HOME HIPPIES!" Now, I can't remember if they actually were "hippies" or not but I had to refrain from laughing while explaining why it wasn't appropriate to make such comments to strangers. Especially to groups of strangers who could probably run a lot faster than we could.</blockquote>
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13. This is for my co-worker whose a year older today!! When this little guy sang happy birthday, he always ended it with "Wallaby, wallaby"! Hehe.</blockquote>
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14. One of the most endearing kids I've ever worked with used to pronounce "rocket ship" as "what-da-shit". Incidentally, we would sing the song, "Zoom Zoom" (about a what-da-shit going to the moon) almost everyday.</blockquote>
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15. This is about the same oh-so-endearing kid yesterday. He loved socially interacting with his instructors and was a total ham when he wanted to be. One day he started doing his "shake your boom boom" dance with the cute booty shake but this time when he sang it, he said "shake your boom boom, shake your boom boom, shake yo ASS".</blockquote>
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16. Often times working in this field, you just don't know if the individuals you support know who you are, especially if they're non-verbal or have limited speech. It's nice sometimes to get a sign of some sort. This one little guy who started off with limited verbal communication (1-2 words), would always "greet" you by saying whatever phrase/song/action he associated you with. It was the sweetest thing whenever he saw you and said/did whatever thing he paired you with, which was then met with the most over-the-top praise (of course), and delight shining in his adorable face. For example, whenever he saw me, he grabbed my hands and started chanting "a polar bear, a polar bear" while dancing from side-to-side, since we always read that book together. It was later changed to "A-wooooooo!" (howling wolf from "Walking Through the Jungle" book). If you were a recipient of a special little greeting, it just warmed your heart.</blockquote>
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17. For the past few weeks, my current primary kiddo has been obsessed with stating things are "broken" and following it by saying the statement, "I'll buy it" or "go buy it". One day, I showed him a "boo boo" on my finger and he touched it gently and stated, "Angela is broken" (pronounced bow-kin), "I'll buy Angela".</blockquote>
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18. The hardest part about this job, or this field, is goodbyes. I suppose that goes for life really, but there's just something about these individuals that leave such an impression on your heart. One of the most memorable kids I've ever worked with, captured my heart and never let it go. When he left our program, my heart just shattered! And I guess his did too. Apparently, months after he left, he still said, "Angela?" every single morning! It was half a year before he came to visit us, and that was only because he had finally stopped asking for me/us. I guess we do leave more of an impression on these individuals than we think, and they do remember us and the integral part we've played in their lives. Now, doesn't that make it all just SO worth it?</blockquote>
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(April 2013)</blockquote>
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I must add 2 more!!</blockquote>
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19. More recently, when this girl would get upset at us for whatever reason, she would say/shout, “GOLIAS!!” We initially thought she was calling us “Goliath” and therefore a giant but we soon found out that it was the big, blue (invisible) elephant from “My Big, Big Friend”! This amusing discovery definitely helped keep the spirits high during these tougher moments!</blockquote>
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<span style="background-color: white; color: #141823; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 19.3199996948242px;">20. This one happened just a few weeks ago with my current primary, aka, the most adorable 4 year old girl in the world. She loves the book “Dear Zoo” which goes, “I wrote to the zoo to send me a _(pet)_, it was too _(adjective)_ so I sent it back”. During her exit routine one day, I put on her leopard hat (much to her delight) and another staff walked by and said, “Ohh it’s too small! Angela’s head is too big!” to which she replied, “So I sent it back!” </span></blockquote>
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Never a dull moment!</blockquote>
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<span style="color: #444444;">And never a dry eye!! Thank you for the beautiful words Angela, as parents of children with special needs children, we often worry whether our children are actually being cared for adequately when we are not around. With people like you working with them, we know our children are not just cared for, but cared about. From the deepest parts of my soul, and from every member of my family, THANK YOU</span><br>
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<span style="color: #444444; font-size: large;"><b>ps, #5 is my Eric, many many years ago, but he still says that lol!! And I was present for #6, That <a href="http://dramaway.com/dramaway/" target="_blank">Dramaway</a> production was THE best theatrical experience I have ever had and some of the greatest laughs!!! </b></span><br>
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Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com0tag:blogger.com,1999:blog-5140377992309987962.post-48482205303621436952015-01-07T08:41:00.000-08:002015-01-07T09:22:00.859-08:00The Evolution of Autism Awareness Over a Century, as Shown Through Four Generations of One Family<div dir="ltr">
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<i><span style="color: #444444; font-size: large;">Proud to present another guest written Days of Whine and Rose article. </span></i></h3>
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<i><span style="color: #444444; font-size: large;">Written by my son, Christopher Medeiros. XO</span></i></h3>
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<a href="http://en.wikipedia.org/wiki/Autism_spectrum" style="font-family: Arial, Helvetica, sans-serif;" target="_blank">Autism Spectrum Disorder</a><span style="color: #444444; font-family: Arial, Helvetica, sans-serif;"> (ASD) is the umbrella term for a group of </span><a href="http://en.wikipedia.org/wiki/Neurodevelopmental_disorder" style="font-family: Arial, Helvetica, sans-serif;" target="_blank">neurodevelopmental disorders</a><span style="color: #444444; font-family: Arial, Helvetica, sans-serif;"> that share a common deficit in the areas of social and/or communication development. The word autism was first coined by Eugen Bleuler in 1911, however it was not used in medical circles until much, much later. Autism was first described scientifically by Hans Asperger and Leo Kanner (independently) in the late 1930s, The terminology and diagnosis however only become prevalent after 1980 with the publication of the DSM-III. It was then that autism became a diagnosis in its own right. Prior to that time an autistic person would have been assessed with mental retardation or childhood schizophrenia </span><a href="http://ww1.cpa-apc.org/Publications/Archives/CJP/2003/september/tidmarsh.asp" style="font-family: Arial, Helvetica, sans-serif;" target="_blank">***</a><span style="color: #444444; font-family: Arial, Helvetica, sans-serif;">. </span></div>
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<span style="color: #444444; font-family: Arial, Helvetica, sans-serif;">In 1971 a <a href="http://www.mcss.gov.on.ca/documents/en/mcss/dshistory/legislation/Williston%20Report.pdf" target="_blank">report</a> was issued by Walter Willinston to the Minister of Health. "The Present Arrangements for the Care and Supervison of the Mentally Retarded (in Ontario)". Number one on the statement of principles and objectives states: </span></div>
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<span style="color: #444444; font-family: Arial, Helvetica, sans-serif;"><i>The problems concerning mentally retarded persons cannot be viewed in isolation.Civilisation must provide every child with the opportunity of developing to his optimum potential. It has an obligation to all handicapped alike- the crippled, the deaf, the blind; those who are mentally retarded or emotionally disturbed; those with cerebral palsy or perceptual handicaps- to make certain that each is educated or trained so that he can reach his true potential. Thereafter society must provide each with assistance, protection, opportunity and shelter as will enable him to take his place as a contributing member of the community and ensure to him a decent standard of living so that he can walk through life with dignity </i></span></blockquote>
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<span style="color: #444444; font-family: Arial, Helvetica, sans-serif;">However those words were not heeded for many decades. Today society is much better at accepting and accommodating those that are seen as different. Society has gone from mislabelling autistic individuals with mental health disorders to differentiating autism as its own separate entity and from hiding autistic people away in institutions to celebrating neurodiversity in the span of just 100 years. </span></div>
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<span style="color: #444444; font-family: Arial, Helvetica, sans-serif;">The following is a look at one family’s experiences with society’s perceptions of autism over this period.</span></div>
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<span style="color: #444444; font-family: Arial, Helvetica, sans-serif;">Mr and Mrs Alfred Jackson had five children. The second eldest, a son named Russell, born in the early 1910, would now receive a diagnosis of autism. At the time, he was never assessed. They were a poor family and there was no such thing as universal health care at the time. All medical visits meant paying a large fee. There was also the realisation that if their son was assessed as "feeble-minded", the common term at the time, he would be removed from their home and placed in a sanatorium. Instead the family chose to keep him at home, hiding him from most of society. There were no laws enforcing that children attend school, so Mr and Mrs Jackson were able to keep him home without authorities becoming involved. They lived in a small close knit community outside of Collingwood, Ontario. A community that stood together. Russell was accepted there. The rest of society, however, would not have been as accommodating. When Mrs Jackson became very ill, with what was likely cancer, Mr Jackson’s sisters got together to figure out how to ensure Russell would be cared for. At the time, the late 1920s, when the mother died, children were often placed in orphanages because father’s were deemed unable to care for their children alone. Although Russell by this time was nearly 20, he was completely non-verbal and had limited self care skills. He needed, in other words, someone to look after him. Mr Jackson’s sisters agreed Gladys McKinney (nee Jackson) would take in Russell. In the end, thanks to a supportive small community, Alfred was able to keep Russell with him. The only outings outside their home were to Aunt Gladys’ home, and Aunt Gladys and her children were frequent visitors. </span></div>
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<span style="color: #444444; font-family: Arial, Helvetica, sans-serif;">Evalena McKinney, Gladys’ daughter, clearly recalls visiting Uncle Alf and Russell the day Russell uttered his first word. He was in his mid to late thirties, and Gladys had taken Evalena to visit the family. Russell had not known they were coming. Russell was upstairs when they arrived, but had peeked over the railing. When he saw them he clearly said “Aunt Gladys!”. Everyone cheered and cried. Over the next few years his vocabulary increased, but without an accepting society or access to disability pensions or services, Russell still spent his days being looked after rather than engaging with society. Society was not willing to accept people who were “different” living in their midst. When Alfred died, Russell’s sister took him in, and there he lived until he died. </span></div>
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<span style="color: #444444; font-family: Arial, Helvetica, sans-serif;">Within society, but not allowed to be a part of it.</span></div>
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<span style="color: #444444; font-family: Arial, Helvetica, sans-serif;">In 1952 Evalena Pollard (nee McKinney) gave birth to her third child, Phillip. He had a host of health issues as an infant and frequently developed pneumonia. At one point baby Phil stopped breathing and was rushed to hospital, but not before suffering an acquired brain injury. In a few short years he would be labelled mentally retarded, but there was more at play. He never spoke or uttered sounds. He wandered. He loved to spin objects. He rocked. Later, as an adult, he would be reassessed as Autistic with Mental Retardation. The Pollard’s lived in Toronto, but their neighbourhood was as close knit as Russell Jackson’s community had been. So even though they were told to place Phillip in an orphanage, they kept him with the family. By this time, laws had been enacted requiring all children to attend school. But schools were not set up to accommodate non verbal people like Phillip who had no toileting skills or awareness of danger. Eventually he was given a spot at the “school” attached to the building on Beverley Street that housed "The Association for the Mentally Retarded". </span></div>
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<span style="color: #444444; font-family: Arial, Helvetica, sans-serif;">This school had a reputation of suggesting that children attending be placed in institutions, but it was the only school accepting anyone with mental or developmental challenges of any sort. You placed your child in this school, or your child was removed from your custody. As time went on, the principal of Beverley Street school contacted Phillip’s parents, Evalena and her husband Frank Pollard, just as they had with most of their charges. Mr and Mrs Pollard were given the ultimatum. Place Phillip willingly in Huronia Regional Centre in Orillia and be allowed pre-scheduled visits and updates on his care, or he would be removed from them and placed in Huronia or another institution with all their rights as parents removed. </span></div>
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<span style="color: #444444; font-family: Arial, Helvetica, sans-serif;">Phillip was seven years old. </span></div>
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<span style="color: #444444; font-family: Arial, Helvetica, sans-serif;">Frank and Evalena made the only choice they could, to place Phillip in Huronia but still be able to be in his life, if even minimally. </span></div>
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<span style="color: #444444; font-family: Arial, Helvetica, sans-serif;">Over the years Phillip was exposed to serious sexual and physical abuse within the walls of Huronia. Parents throughout the years, Frank and Evalena included, brought their concerns about their children’s welfare to the management of Huronia and to other authorities, but were dismissed. The residents of Huronia were not considered people to society at large, so their welfare was of little to no importance. Phillip spent the majority of his short life being exposed to horrendous cruelty simply because society still could not accept those with mental or developmental health challenges living within their midst. Lori Pollard, the youngest of Frank and Evalena’s children, recalls her parents instilling the notion that all people are people from as far back as she can remember. Her parents would bring Phillip home for visits as often as they were allowed and refused to keep him hidden. But it was never easy. Society still saw him as an aberration, not a person.</span></div>
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<span style="color: #444444; font-family: Arial, Helvetica, sans-serif;">This discord between her family's views and those of society would colour Lori’s perceptions when she had her own children. In 1990, Lori Medeiros (nee Pollard) gave birth to her first child, Christopher. Me. As an infant and child I exhausted her with my lack of need for sleep and extreme activity level. I was extremely bright, surpassed all physical developmental goals (sitting up, crawling, walking, climbing, jumping) long before my peers and had an extensive vocabulary. </span></div>
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<span style="color: #444444; font-family: Arial, Helvetica, sans-serif;">But I could not stray from routine. </span><span style="color: #444444; font-family: Arial, Helvetica, sans-serif;">If my mother wanted to walk a different route to the local store, this change would be so upsetting, so physically painful for me, that I'd meltdown for up to an hour. </span></div>
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<span style="color: #444444; font-family: Arial, Helvetica, sans-serif;">I didn’t, and still don't, understand how rules could be flexible. If it was okay to pick flowers in a field, why could I not pick flowers from someone’s front garden? I loved to play sports, but turn taking or playing a team sport were impossible for me. </span></div>
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<span style="color: #444444; font-family: Arial, Helvetica, sans-serif;">I was diagnosed at 3 years old with ADHD and my mother was given a ritalin prescription for me. She refused to fill the prescription. Instead she went to the mental health library located on College Street in Toronto, posing as a University of Toronto student in order to gain access. The internet was not a place to obtain information at the time, and local libraries did not have anything in terms of reliable medical or developmental resources. She researched ADHD. Some of the symptomatology fit me, but some didn’t. At the same time I was diagnosed, my brother was born, Eric. Eric was a traumatic birth and my mother was treated immediately after his birth for physical shock. Newborn Eric slept for twelve straight hours. It was later discovered through an MRI that he had not been sleeping. In fact, he had been in a hypoglycaemic coma and had suffered brain damage as a result. Where I had been talkative and restless and active, Eric was calm and quiet. He needed very little soothing and was quite content on his own. My mother was grateful of the respite, but concerned, as this was not normal infant behaviour. Eric did not cry. Not once. Until he was six months old. And believe me, as a 3 year old, I'd pinch him to try to make him cry (don't tell my mother).Then from six months on he would cry as if in extreme distress for hours on end. At this point he also started to throw his body backwards violently if anyone other than our mother held him. Mom took him to the emergency room continuously but was always sent away with cautions to be less ‘fretful’ about her baby. When by nine months Eric still hadn’t uttered a single sound, not even "Mama" or "Dada", my mother consulted our family physician. An old time GP, who had been with the family since the days of Gladys McKinney, Dr Disenhaus did not dismiss Mom</span><span style="color: #444444; font-family: Arial, Helvetica, sans-serif;">’s concerns the way the hospital did, and he sent her to specialist after specialist. Finally at three years three months Eric was diagnosed with autism at the Surrey Place Centre. Autism was not a common word in the 1990s. Mom was told that by the time Eric hit his teen years he would likely be institutionalised, that he would likely never be out of diapers and surely never speak. She left Surrey Place without any information, support, guidance, funding or services. She decided to make another visit to the mental health library. Mom posed once again as a University of Toronto student to gain access. While researching autism and autism therapies she started to notice that one particular form of autism, Asperger’s Disorder, seemed to fit me to a T. Things started to make sense. There still were no services for autism, but there were services for ADHD, so she did not take me to be assessed until much later in order to make sure I kept the resources I had. Eric however, still needed something, anything. But there was nothing. So she trained to be a therapist herself in order to give Eric, and me, the skills we needed. Eric is 21, and still lives at home, not in an institution. He is semi verbal and can cook his own meals. He is a pain in the ass like any brother, but I can't imagine life without him around. He will always need someone to care for him, but he certainly has progressed miles beyond what was predicted and will continue to progress. He is, and always will be, a vital part of society. When I was in elementary school, the requisites for being assigned a teachers assistant changed, and you needed a formal diagnosis. Mom took me in at this point to be formally assessed. I was diagnosed with Aspergers Syndrome with OCD traits. I recall being so intrigued by what the doctor was telling me, and I asked her numerous questions. Mom jokes that she didn't have to ask a thing!! By this point services were starting to become available, but only to those who fought for them, so my mother threw herself into advocating. She was able to get funding and services for Eric and I that are now common place, but were not even thought of, or were just pilot projects at the time. Schools were now open to those with developmental challenges, but only in segregated classrooms. As I had an above average IQ those placements were not appropriate for me, so my mother forced the school board to provide quiet rooms, an education assistant to keep me on task or accompany me when I needed to escape from sensory overload. She took a job as school yard supervisor to protect me from the ever present bullies. Thankfully, schools now all have bullying prevention programs, and the incidences of autistic people being bullied are going down. </span></div>
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<span style="color: #444444; font-family: Arial, Helvetica, sans-serif;">I just graduated from college, on my way to becoming a master plumber, despite my grade school principal’s insistence that I would never be productive in society. This article itself is based on a sociological study I submitted while at college. I was able to write the report, and in it reference myself as autistic, without fear of discrimination. In fact, it was very well received.</span></div>
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<span style="color: #444444; font-family: Arial, Helvetica, sans-serif;">A family member recently contacted my mother for information on getting their child, four generations removed from Russell Jackson, assessed for autism. The family member themselves even wants to be tested. Mom was able to send link after link after link. Information, services and resources at the click of a mouse. There was no fear, nor apprehension. There was only joy at the thought that 'yeah, things make sense now".</span></div>
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<span style="color: #444444; font-family: Arial, Helvetica, sans-serif;">We’ve come a long way from hiding your child to make sure they weren’t forced into an institution.</span></h4>
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<span style="color: #444444; font-family: Arial, Helvetica, sans-serif;">Can’t wait to see how far we will go from here.</span></h4>
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Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com2tag:blogger.com,1999:blog-5140377992309987962.post-67637482503172351952014-12-17T09:11:00.000-08:002015-07-17T11:17:13.649-07:00The Night The Spirit of Christmas Filled Our Autism Home<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-E9AuehMUWsk/VJGxGgrwjpI/AAAAAAAAIW0/5qTrx43HTFs/s1600/DSC_0237.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="360" src="http://4.bp.blogspot.com/-E9AuehMUWsk/VJGxGgrwjpI/AAAAAAAAIW0/5qTrx43HTFs/s1600/DSC_0237.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">photo is a close up of a hand made dove ornament and white poinsettia blossom on a Christmas tree, lots of gold ( Au! ) and sparkling lights</td></tr>
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<span style="color: #444444;">I would not call myself a deeply religious person. I think a more appropriate adjective would be spiritual. </span></div>
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<span style="color: #444444;">I was brought up in the United Church, and when my children were small, I taught Sunday School. However I never actually associated church, or my faith, with the building or the rites. It was always the community. </span></div>
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<span style="color: #444444;">As my autistic son Eric, at the time still un-diagnosed, became a toddler, I had to stop attending church. I now know that the sensory overload of being in a room or building with extremely high ceilings is almost unbearable for him. As is the sound of an organ playing, or the echoes of peoples' voices as they sing hymns. At the time, however, I just knew that my baby was inconsolable as soon as we entered the church. I couldn't teach Sunday school any longer as he needed my full attention. We couldn't attend the actual service as I had to leave immediately to try to soothe him. No one ever looked down on us. No one ever shunned us. In fact, there were several offers from others to give me a break trying to soothe him. But my monkey could not stand the touch of others, could barely tolerate my touch, so I knew that was not an option. </span></div>
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<span style="color: #444444;">We stopped going.</span><br />
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<span style="color: #444444;">The church community is strong though, and they never forgot us. Even now, two decades later, someone each week invariably approaches my mother or eldest sister to ask about us. Last Christmas, our church, because of declining numbers, had to close its doors. The congregation as a whole moved to a nearby church with a similar ethos. It has been, by all accounts, a happy marriage. </span></div>
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<span style="color: #444444;">But I still have not been able to attend. </span></div>
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<span style="color: #444444;">This year, as a fundraiser for the church, a husband and wife whom I remember from many many years ago when I was still able to attend, asked a good friend of the husband to help out the church. Who is the good friend? Why, a Jolly Ole Elf named Santa Claus.</span></div>
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<span style="color: #444444;">The wife would accompany Santa on visits to homes, (the husband, myseriously, is never there when Santa is, hmmm).Santa would spend an hour or so with the family, read The Night Before Christmas and have a jolly good time for a ridiculously small fee that was then given in its entirety to the church. </span></div>
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<span style="color: #444444;">Last night, Santa came to call on us. </span></div>
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<span style="color: #444444;">I had been preparing Eric for the visit for a few days as he doesn't do well with surprise visitors. But I had been telling my four year old granddaughter simply that a very special visitor was coming. </span></div>
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<span style="color: #444444;">Yesterday was a long, long day. My mother, 83 years old, fell a few months back and suffered several broken bones that are still not healed. She is also losing her sight. As is unfortunately typical, many (by all means not all) medical professionals condescend or discount the concerns of elderly women. They only receive adequate care if someone accompanies them. Sad, but all too true. So yesterday started off with me interviewing potential respite workers for Eric, than driving all the way across the city to pick up my Mom and take her to her eye surgeon. She has some new concerns and more specialist appointments were made. We visited the ophthalmologist to get new glasses, picked up Christmas gifts she is unable to get on her own, rushed back to my place to make dinner, showered and dressed Eric than got my granddaughter ready. </span></div>
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<span style="color: #444444;">I am used to living a hectic life, but things have been overwhelming lately and I was feeling stressed. </span></div>
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<span style="color: #444444;">It is often said that autistic people lack emotion or empathy. In truth, it is actually the opposite. They feel it so intensely that they can sometimes shut down in order to shut it out. Eric is quite sensitive to my emotions in particular. The bond a mother has with a newborn never waned between us, it is still as strong as ever. Eric was feeling my anxiety. And he was having a tough night. In the end he needed some medication and deep pressure therapy. He then fell asleep. </span></div>
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<span style="color: #444444;">As the time approached, I woke Eric and brought him downstairs. My granddaughter was bouncing, hyper to the extreme waiting for the surprise guest.</span></div>
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<span style="color: #444444;">Finally, in walked Santa and the better half of the couple that 'know' Santa.</span></div>
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<span style="color: #444444;">It was a wonderful visit. My granddaughter and Santa spent 90 minutes telling each other stories, making up new Christmas caroles, and having a jolly great time. </span></div>
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<span style="color: #444444;">But it was the 15 or so minutes that Eric joined in that filled my home with the true spirit of Christmas</span></div>
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<span style="color: #444444;">You see, I am a single mom, not able to work a great deal because of my household's needs, so we often go without and things cant get fixed or replaced. When Eric`s anxiety gets too much for him, he sometimes bangs his head or feet on the walls. We have holes in the walls. In short, although our home is filled with love, it is not a lovely home. To add to that, Eric is also not always good even with expected visitors. It is still a change in routine. He can make very loud unexpected noises or bang his head in an effort to ease the extreme anxiety he feels as a result of the change. To the uninitiated this can be disconcerting. </span></div>
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<span style="color: #444444;">But I forgot that this was Santa.</span></div>
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<span style="color: #444444;">Santa didn't see the holes, didn't act as if we were somehow lacking. He deftly managed to figure out that Eric loves the Power Rangers, and brought a bunch of Power Ranger themed gifts. He spoke softly with Eric (most people seem to think that a lack of typical verbal language means you must speak loudly to an autistic person) and he kept his sentences short. He knew that even though Eric was sitting across the room from him, and seemingly not aware of anyone else's existence, that in truth Eric was very aware. Santa didn't flinch when Eric yelled, nor did that stop him from connecting with Eric. I'm not sure how much experience Santa has with autistic people, I know his friends, the husband and wife, do not have a lot themselves, but Santa (and the lady accompanying him) never once acted, or reacted as if Eric was anything else but Eric. A person. That is not how people typically react to my son. It warmed my heart. When Eric had reached his threshold and wanted to go to bed, he allowed Santa to hug him, something Eric is not fond of and reserves only for very special people. </span></div>
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<span style="color: #444444;">Santa remained for another 75 minutes, entertaining us and in the last few minutes Eric came back down, dressed in pjs, to hang out with us. As Santa left Eric allowed him another hug. A TWO-FER! That is unheard of. </span></div>
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<span style="color: #444444;">My biggest concern with Santa taking time out of his busy schedule and visiting us was that Eric would not comprehend why there were not presents under the tree. Would not comprehend that Christmas was still a week away. I was worried that when he didn't see his Christmas stocking and gifts that he'd meltdown. And a 21 year old 200+ lb man melting down is not an easy sight to see, or manage. But he didn't. He seemed to grasp that Santa was just visiting. Eric of course asked for more gifts but was OK with being redirected and assured that there would be more gifts on Christmas day.</span></div>
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<span style="color: #444444;">Santa left, I took my Mom home, then got everyone into bed. Eric went to bed immediately and slept peacefully the whole night through, another rarity. That night, as I sat relaxing in my quiet home (EXTREME RARITY!) , sipping a glass of wine and recalling the events of the evening, the tears started to flow. Happy tears. My boys and I have not attended church as a family for two decades. But our church did not forget us. All any Autism Household wants is awareness and acceptance. Santa showed us last night that we have much more than that. We have a community that loves and GETS us. A community that cares about us. A community that doesn't see us as 'that' family, but sees us as THEIR family. </span></div>
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That is what Christmas is all about</span></h4>
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<tr><td class="tr-caption" style="text-align: center;">Eric pointing at Santa, Santa in his red vest, wearing a pocket watch and his hat smiling at camera</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Santa sitting in an armchair in my tiny living room at the base of the stairs, holding his sack, wearing his fur trimmed cape and hat, speaking to my 4 year old granddaughter, dressed in in black velvet dress with red puffy skirt and red bow in her hair. She is listening intently</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Eric dressed in one of his favourite sweatshirts, it has Mickey Mouse and snowflakes on it, unwrapping a power rangers decorated plastic bucket. Inside are power frangers pencils, stickers and rubber bracelettes</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Santa sitting in the armchair reading the Night Before Christmas to my Granddaughter while her father, my eldest son Chris ( who has gust written on this blog) sits on the stairway behind them grinning broadly watching his daughter with Santa. Oddly, the skirt of my granddaughter's dress looks pink, however it is red!</td></tr>
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Merry Christmas Everyone!!!!!!!</span></h4>
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Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com2tag:blogger.com,1999:blog-5140377992309987962.post-6955174717860766382014-10-03T10:23:00.000-07:002014-10-03T10:55:18.362-07:00A Dream is a Wish Your Heart Makes<div class="separator" style="clear: both; text-align: center;">
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<span style="color: #444444;">As a single mother the hardest reality I had ever had to face was that I would never be able to make my autistic son's only wish a reality. All he has ever asked for, from the moment he learnt to speak, was to give Mickey Mouse a big hug, to simply hold Mickeys hand. As Eric approached his 21st birthday, the big one in my family, I grew more and more depressed. His simple beautiful wish, the only thing Eric wanted out of life, was beyond my grasp. We barely make rent each month, and a trip to Disney is a thing of fantasy. My only dream in life soon became making sure my monkey got his hug. I thought I finally found a way, but then..........</span><br />
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<span style="color: #444444;">My son Eric is autistic. He is also cognitively delayed and has severe anxiety disorders. Eric has been to hell and back the last few years due to his anxiety, hospitalised more than once. But even when his anxiety was at its worst, several times a day, each and everyday, Eric would grab your attention and ask ''Eric hug Mickey? Mickey hold Eric's hand?''. He always held fast to his dream. My heart broke every time, because it was a dream I knew I could not make come true. As Eric's twenty first birthday approached I was determined to find a way to make it a reality. Friends, relatives and people who follow my blog all took on the cause. Every one wanting Eric to have his dream come true. Among the wonderful suggestions was hiring someone to dress as Mickey and attend Eric's party. </span></div>
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<span style="color: #444444;">Finally, I could see the dream becoming reality.</span><br />
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<span style="color: #444444;">But Then.......</span><br />
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<span style="color: #444444;">My 83 year old mother had a terrible fall just 3 weeks before Eric's birthday. She broke her shoulder in several places and her finger on her other hand. Her overall health deteriorated rapidly. She was in terrible shape and needed help with all aspects of care. My focus shifted from dreams of Mickey to making sure Mum had what she needed and arranging things with my siblings.</span></div>
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<span style="color: #444444;">I was starting to accept that dreams don't come true</span><br />
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<span style="color: #444444;">But my Mum is a trooper, who stunned doctors and all of her children. She is regaining her strength and a week before Eric's birthday I was able to go ahead and make plans for the party. </span></div>
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<span style="color: #444444;">I researched and contacted many costume rental and entertainer companies. Those that bothered to return my call were quite expensive, had sub-par costumes, or weren't amenable to working a party for an adult. The rest had nothing available on such short notice. </span></div>
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<span style="color: #444444;">I fell deeper into depression.</span><br />
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<span style="color: #444444;">It seemed as if the world was determined that my monkey would not get his dream.</span><br />
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<span style="color: #444444;">With 6 days to go I tried one more place. Something just told me, try one me time. So I contacted the </span><br />
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<span style="color: #444444;"><a href="http://www.thepartykingdom.com/" target="_blank">Party Kingdom</a> </span><span style="color: #444444;">and I got an answer right away! YES they had Mickey and Minnie, and YES either one was available to rent. I talked to my eldest son and he agreed to help Mickey take form. He even practised his Mickey voice. I started to allow myself to believe that my monkey's dream really might come true. I quickly booked the costumes and explained why this was such a big deal. Cathy, who runs Party Kingdom out of her own home wrote back. Her son's best friend , who often assists with the business, has two teen-aged severely autistic siblings. Cathy regularly donates use of her costumes to a local centre for children with varying disabilities and challenges ( <a href="http://www.erinoakkids.ca/" target="_blank">Erinoak</a>) and insisted I take both Mickey AND Minnie, at a much too reasonable rate. Tears poured down onto my keyboard as I wrote to thank her. I was getting excited, this really could come true!! I convinced my my niece Sara to take on the Minnie roll, and delayed the party by one week to allow everyone the opportunity to make arrangements and be able to come. The excitement was palpable. Followers of my blog started messaging me telling me how excited they were for Eric, and Cathy from Party Kingdom and I chatted many times, both of us so excited about the special day to come.</span><br />
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<span style="color: #444444;">Three days before the party city workers arrived and tore up the sidewalk in front of my house. How would anyone be able to get in? But my family is awesome and sincere offers to carry those into the house who couldn't navigate the torn up sidewalk poured in.</span></div>
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<span style="color: #444444;">I scrubbed and cleaned, and I ordered trays of food so I could enjoy the party instead of being in the kitchen. </span></div>
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<span style="color: #444444;">I spent the whole night awake worrying SOMETHING was going to ruin things.</span></div>
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<span style="color: #444444;">Early in the morning on the day of the party I went to pick up the costumes. Cathy and I had a wonderful long talk about autism and I promised to send her pictures. I drove off, wishing I had given her a big hug and went to pick up the trays and the massive Mickey Mouse birthday cake.Then I carefully drove home, sure that somehow the cake would be ruined. </span></div>
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<span style="color: #444444;">My other two sons helped me unpack while Eric bounced excitedly in the doorway. He now knew it was his BIRTHDAY! </span></div>
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<span style="color: #444444;">Eric had no idea Mickey and Minnie were coming to see him, that was to be a surprise. </span></div>
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<span style="color: #444444;">I set up the food, bathed Eric and helped him dress in his Spiderman costume (did I forget to mention? It was a SuperHero themed party!) then set about getting my granddaughter ready. But her costume no longer fit!!!!! Quickly I grabbed her ballerina costume and made her into Super Ballerina. </span></div>
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<span style="color: #444444;">Whew. </span><br />
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<span style="color: #444444;">Another crisis averted.</span><br />
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<span style="color: #444444;">With Eric dressed and playing on the computer in the bedroom, my granddaughter ready and colouring in the 'man-cave' with her father and my other son, I threw </span><span style="color: #444444;">some chicken wings into the oven and jumped into the shower. </span></div>
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<span style="color: #444444;">Only one and a half hours to go!!!</span><br />
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<span style="color: #444444;">I bathed quickly and as I started to dry my hair I heard something.</span><br />
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<span style="color: #444444;">A knock at the door?</span><br />
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<span style="color: #444444;">I was just in my robe so I yelled down to the boys to answer the door. No response. I listened, but there wasn't another knock so I went back to getting ready.</span></div>
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<span style="color: #444444;">All dressed I went downstairs and asked the boys who was at the door. Apparently they hadn't heard me and so had not checked. I opened the front door. No one at the door, but all my neighbours were lined up across the street. I guess I was in shock because I closed the door, checked on the wings and then looked out the window. </span></div>
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<span style="color: #444444;">Yes, the whole neighbourhood was out front. </span></div>
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<span style="color: #444444;">I went to the door again. There were fire trucks and police everywhere.</span></div>
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<span style="color: #444444;"><br /></span>
<span style="color: #444444;">Gas Main leak.</span><br />
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<span style="color: #444444;">We all had to run out of the house as fast as we could.</span><br />
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<span style="color: #444444;">We were being evacuated.</span><br />
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<span style="color: #444444;"><b>ONE HOUR BEFORE THE PARTY.</b></span><br />
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<span style="color: #444444;">All I managed to grab was my purse and Eric's medication.</span></div>
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<span style="color: #444444;">Eric's anxiety was on full tilt. He was banging his head, screaming and I wasn't entirely sure he wouldn't bolt. When Eric sees police he is sure they are going to force him to go to the hospital, so he was terrified. When the police tape went up cordoning off the area I thought I wasn't going to be able to hold him back. </span><br />
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<span style="color: #444444;">I am no match for a 21 year old 200lb man dressed as Spiderman and if he tried to run the barricade, I'm sure the fireman would have had to tackle him. </span></div>
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<span style="color: #444444;">I was terrified for my baby and horribly disheartened that we got to within one hour of his dream coming true only for it to be ripped away.</span></div>
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<span style="color: #444444;">In hard times, peoples' true character really shine through. The Fire Chief came up to Eric right away and spoke to him as if he was a person (something <i>most</i> people do not do) ''Hey Spiderman!! We're working hard to fix it so you can go home soon''. He caught on to Eric's made up language and regularly came over to update me and chat with Eric. There was an entire neighbourhood in that small area, but it was Eric all the fireman and police were paying attention to. And <i>GOOD</i> attention. A police officer offered to get us a ride somewhere if that would help Eric, and also kept us in the loop. If all went well, we might be back into our home in an hour, but it could take all night. </span></div>
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<span style="color: #444444;"><br /></span></div>
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<span style="color: #444444;">I gave Eric some medication, did some pressure therapy with him, and when he was calm enough I took out my phone to let the party guests know it looked like there wouldn't be a party. </span></div>
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<span style="color: #444444;">My family would have none of it, they were driving in from all parts of Southern Ontario and they were going to celebrate Eric's party even if that meant in a park or a parking lot.</span></div>
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<span style="color: #444444;">But they couldn't get near us. </span></div>
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<span style="color: #444444;">The whole area had been cordoned off, my sons and granddaughter and I stuck within that prison.</span></div>
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<h4 style="text-align: center;">
<span style="color: #444444;"><i>Why, oh why couldn't this simple dream come true.</i></span></h4>
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<span style="color: #444444;">Eric settled thanks to the medication, and two and a half hours after the party was supposed to start the police tape came down. We could go home. From the east, through the park came a niece, her husband and 2 little ones, from the north came another niece with her husband dressed as Captain America, their little ones plus one more, from the east again came one of my sisters, and then a nephew. Handsome Man called and he was stuck in traffic but nearly here. Ditto with my mom!</span></div>
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<span style="color: #444444;">The firemen came over, laughed with us and wished Spiderman a happy birthday. </span></div>
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<span style="color: #444444;">Apparently, when I had told the chief that we were expecting family from quite some distance he had gone himself to see if they were waiting outside the boundaries. He found them (easy to do when one is dressed as Captain America) and kept them updated and entertained. </span></div>
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<span style="color: #444444;">Everyone hugged and went inside.</span></div>
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<span style="color: #444444;">Now normally when we have a family get together, Eric likes to remain in his room. He'll come down for presents, then head back up. </span></div>
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<span style="color: #444444;"><br /></span></div>
<span style="color: #444444;">Not this time!!</span><br />
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<span style="color: #444444;">Eric remained with the family for the whole party! We laughed, we ate, we had cake and presents, and then........</span></div>
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<h4>
<span style="color: #444444;"><i>MAGIC</i></span></h4>
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<h4>
<span style="color: #444444;">Mickey and Minnie came down the stairs. </span></h4>
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<span style="color: #444444;">Eric was in shock. </span><br />
<span style="color: #444444;"><br /></span>
<span style="color: #444444;">He couldn't move or utter a sound. </span><br />
<span style="color: #444444;"><br /></span>
<span style="color: #444444;">I am sure that he actually thought he was dreaming. </span><br />
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<span style="color: #444444;">I suggested Eric get up and give Mickey a hug. There wasn't a dry eye in the place. Eric was so gentle with Mickey and Minnie. Hugging them, softly holding their hands, showing them his presents.</span></div>
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<span style="color: #444444;">Someone suggested we go outside to take pictures. Eric carefully guided Mickey and Minnie across the street to the park. He sat with them on a low wall and ever so gently caressed their faces, held their hands, and gave them kisses. It was the most beautiful thing to see. </span></div>
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<span style="color: #444444;">So you see, even when the city tears up a sidewalk and a gas main bursts, when the heart wants something so simple and beautiful, there is nothing that can stop the dream. </span><span style="color: #444444;">Meeting Mickey and Minnie may have been Eric's birthday surprise, but seeing my son so happy was the greatest gift any mother could receive! </span></div>
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<h2 style="text-align: center;">
<b><i><span style="color: #e69138;">Dreams really do come true</span></i></b></h2>
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<tr><td class="tr-caption" style="text-align: center;">Nana's face reflects the joy in EVERYONE'S heart this day!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Opstacle? Nah, a PHOTO OP!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">kisses for Mickey</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Who says being evacuated ruins a birthday party? We Pollard's can have fun ANYWHERE!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">This is what it looks like when a dream comes true!</td></tr>
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<span style="color: #444444;"><br /></span>Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com1tag:blogger.com,1999:blog-5140377992309987962.post-33886763377369518172014-09-25T22:50:00.003-07:002014-09-25T22:50:42.713-07:00The FIVE Principle<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-DP4s7Xnsr08/VCTK41uj7wI/AAAAAAAAFAQ/a16GUnnMoNE/s1600/10750_10151541212707349_391486421_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="color: #444444;"><img border="0" src="http://1.bp.blogspot.com/-DP4s7Xnsr08/VCTK41uj7wI/AAAAAAAAFAQ/a16GUnnMoNE/s1600/10750_10151541212707349_391486421_n.jpg" height="596" width="640" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: #444444; font-size: small;">photo courtesy of Luke Hayne, one of my many muses!</span><br />
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<span style="color: #444444; font-size: small; text-align: justify;">Way back when my own, now adult, children received their </span><span style="color: #444444; font-size: small; text-align: justify;">individual ASD diagnoses, there was precious little information out there. </span><span style="color: #444444; font-size: small; text-align: justify;">The Internet was in its infancy and so, to understand what AUTISM - a word I had only heard in Rainman and </span><i style="color: #444444; font-size: medium; text-align: justify;">St</i><span style="color: #444444; font-size: small; text-align: justify;"> </span><i style="color: #444444; font-size: medium; text-align: justify;">Elsewhere</i><span style="color: #444444; font-size: small; text-align: justify;">- meant, I had to go to what was at the time a specialised, university run, psychological </span><a href="http://www.torontopubliclibrary.ca/detail.jsp?Nr=p_cat_branch_name:Lillian%20H.%20Smith" style="font-size: medium; text-align: justify;" target="_blank">library</a><span style="color: #444444; font-size: small; text-align: justify;"> ( I was young looking enough at the time to pass as a student- first time in my life I lied to 'authorities'). </span></div>
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<span style="color: #444444; font-size: small;">I was a techie. I had AOL and operated in DOS, heck I had used punch cards before I entered puberty.</span></div>
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<span style="color: #444444; font-size: small;">But still, with that, back then the The Internet was NOT an option for information. </span></div>
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<span style="color: #444444; font-size: small;">So the University it was. </span></div>
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<span style="color: #444444; font-size: small;">I SCOURED the DSM IV ET ALIA.</span></div>
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<span style="color: #444444; font-size: small;"><span style="text-align: center;">I (and my children) </span>encountered<span style="text-align: center;"> many , well, ummm, ok, yes, </span>I'm<span style="text-align: center;"> going to say it, we encountered MANY </span>ASSHOLES<span style="text-align: center;"> because the Internet was not as all encompassing as it is now. And people, and yes even PROFESSIONALS, were not as, ummmmm, AWARE, as they are now.</span></span></div>
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<span style="color: #444444; font-size: small;">But wait, one sec. </span><br />
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<span style="color: #444444; font-size: small;">Back then we at least had the EXCUSE that knowledge of autism was only in university libraries (and was pathetic at that). </span><br />
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<span style="color: #444444; font-size: small;">We didn't have the internet to provide us with information at a mouse click any time of day or night.</span></div>
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<span style="color: #444444; font-size: small;">So how did that leave us knowing MORE then we do now? And W<span style="text-align: center;">hat IS the FIVE principle?</span></span></div>
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<span style="color: #444444; font-size: small;">Thanks to the internet, there is a LOT of knowledge out there, at just the click of a mouse. </span></div>
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<span style="color: #444444; font-size: small;">However, there is a lot of, let me coin a word here, there is a lot of MIS-knowledge out there as well. </span></div>
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<span style="color: #444444; font-size: small;">Twenty some odd years ago I had to wiggle (read LIE) my way into a university library just to understand what my sons' diagnoses meant. BUT at the same time I did not have to weed through a plethora of misinformation to get there. </span></div>
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<span style="color: #444444; font-size: small;">This is where the Internet fails us.</span><br />
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<span style="color: #444444; font-size: small;">There is not much about having an autistic child in the 90s and early 2000s that I would applaud (sociologically), but the <b><u>LACK</u></b> of immediate decimation of BS is something I truly miss. When my middle son was diagnosed, December 21, 1996, there were no services. No awareness. Doctors at world renowned hospitals were still telling me my child's autism was CAUSED by me not loving him. </span></div>
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<span style="color: #444444; font-size: small;">HOWEVER, and remember I am a techie person, so yes, HOWEVER, you were NOT able to find ANYTHING on autism on the web. So I found and went to incredible organisations like Geneva Centre For Autism, and met people like Temple Grandin long before they were household names (I am SURE I am fodder for her nightmares because I GUSHED over her when she signed my copy of Thinking In Pictures, MAN I was a DOOFUS!, what was that '98? '01? Holy CRAP I was SUCH a groupie! ) If I could turn back the clock and make 'the net' available, I don't think I would</span></div>
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<span style="color: #444444; font-size: small;">Because then people like Jenny McCarthy, Kerri Rivera and Jim Hu</span><span style="color: #444444; font-size: small;">mble would come up top of the search list. And this would all happen while I was sitting in my pjs , sleep deprived, depressed, looking for ways to help my baby. </span></div>
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<span style="color: #444444; font-size: small;">INSTEAD, I was lucky enough, even though there were no services and we were abused daily by professionals and the general public alike, we were lucky enough to NOT have garbage over shadowing what I was researching in terms of my child.</span></div>
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<span style="color: #444444; font-size: small;">IF you are a parent of a newly diagnosed autistic child, the FIVE principle is likely the MOST important thing you will ever learn, and not something you are likely to ' GOOGLE'.</span></div>
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<b><u><span style="color: #444444; font-size: x-large;">Here are FIVE reasons to take the FIVE Principle to heart!</span></u></b></div>
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<span style="color: #444444; font-size: large;"><b><u>#1 What is the FIVE principle?</u></b></span><br />
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<span style="color: #444444;">WELLLLLLLLLL, to be honest, it is a a term I coined myself, but not without considerable experience.</span></div>
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<span style="color: #444444;">Somewhere around the age of five children on the autistic spectrum -ANYWHERE on the spectrum, from ADD to Severe ASD with Severe Cognitive Delay and Severe Anxiety Disorder- somewhere around this age children go from being infants or toddlers to little children.</span><br />
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<span style="color: #444444;">This is the same developmental step allistic children take around 2 or 3.</span><br />
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<span style="color: #444444;">At this DEVELOPMENTAL age children begin to form a <i>PERSONALITY</i>.</span><br />
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<span style="color: #444444;">They are no longer a thing that needs our constant attention in order to survive. No longer a BABY. They are not a simple extension of <i><u>US</u></i>. They are, quite simply, themselves.</span><br />
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<span style="color: #444444;">An autistic child, regardless of ' level of functioning' (HATE THAT TERMINOLOGY) seems to hit that milestone 2 years later than allistic children.</span><br />
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<span style="color: #444444;">At, or around, age </span><span style="color: #444444; font-size: x-large;">FIVE</span><br />
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<span style="color: #444444;"><span style="font-size: large;"><b><u>#</u></b></span><b><u><span style="font-size: large;">2</span></u></b> </span><br />
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<span style="color: #444444;">For the ASD parent, for 5 years, instead of just 2-3, you have had a symbiotic relationship with your child, A child who often cannot return that connection in a way <i>YOU</i> can comprehend (<i><b>NEVER</b></i> assume that your child is <b><i>DISCONNECTED</i></b>! They are simply speaking a language you have yet to learn).</span><br />
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<span style="color: #444444;">This makes it VERY difficult to see that changes made during this time, a time you are judging by other , Allistic children the same age, the changes happening at this time are happening, at AGE FIVE-ISH, it is difficult to see they are happening as a NORMAL DEVELOPMENTAL STEP and NOT the result of some diet, therapy or 'CURE'</span><br />
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<span style="color: #444444;"><span style="font-size: x-large;"><b><u>#3</u></b></span></span><br />
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<span style="color: #444444;">If your autistic child is making SOUNDS at 5, he or she is VERY likely to use spoken language at some point in their life. THEY will decide when that point is. But as a parent it is your responsibility to give them every opportunity to express themselves, and never doubt that they <b><i>ARE</i></b> communicating with you.</span><br />
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<span style="color: #444444;"><b><u><span style="font-size: x-large;">#4</span></u></b></span><br />
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<span style="color: #444444;">If your child is NOT making sounds by age 5, they in all likelihood will not use traditional methods of communication.</span><br />
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<span style="color: #444444;"><b><i>BUT HERE's the KICKER</i></b></span><br />
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<span style="color: #444444;"><b><u><span style="font-size: x-large;">#5</span></u></b> Even if your child is classified as 'low functioning' (hate typing that phrase as much as I hate hearing it) and 'non-verbal' at 5, that does not mean they cannot understand what you , and others, are saying or that they are not communicating with you. If you were suddenly dropped into a community that did not speak your native tongue, would you be considered 'low-functioning', ie, lets say it, would you be considered STUPID or gasp, FEEBLE.</span><br />
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<span style="color: #444444; font-size: x-large;"><b>NO</b></span><br />
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<span style="color: #444444;">People who cared about you would <u>TRY</u> to understand your method of communication and would try to help you translate that into THEIR method of communication.</span><br />
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<span style="color: #444444;">As you should with your child.</span><br />
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<span style="color: #444444;">The FIVE Principle simply reminds you NOT to</span><span style="color: #444444;"> deify any 'treatment' or therapy that cites changes at or around the five year mark.</span><br />
<span style="color: #444444;"><br /></span><span style="color: #444444;">It also reminds you not to use as PROOF changes in your own child at or about the five year mark.</span><br />
<span style="color: #444444;"><br /></span><span style="color: #444444;">But most importantly, the FIVE Principle reminds you to never, ever doubt that your child HAS developed at five. And will CONTINUE to develop. Y</span><span style="color: #444444;">our autistic child DOES develop, just like all other children. That development may just not occur in a LANGUAGE you recognise.</span><br />
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<span style="color: #444444;">Learn your child's language. remember that CHANGES happen, and they are not happening because you chose X therapy or Y diet.</span><br />
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<span style="color: #444444;">They are happening SIMPLY because your autistic child is round about</span><br />
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<span style="color: #444444; font-size: large;"><b>Don't latch onto playboy bunnies and snake oil salesman</b></span></div>
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<span style="color: #444444; font-size: large;"><b>Latch onto your child.</b></span></div>
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Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com2tag:blogger.com,1999:blog-5140377992309987962.post-45484601019257365522014-09-23T20:13:00.000-07:002014-09-23T20:13:09.840-07:00The Allistic's Guide to Autism<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-hEkH0gF0Vks/VCGC-_3QHDI/AAAAAAAAE6k/V0FibURNUTo/s1600/1795541_224961444362418_288750342_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="color: #444444;"><img border="0" src="http://2.bp.blogspot.com/-hEkH0gF0Vks/VCGC-_3QHDI/AAAAAAAAE6k/V0FibURNUTo/s1600/1795541_224961444362418_288750342_n.jpg" height="640" width="640" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: #444444;">Photos courtesy of Luke Hayne</span><br />
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<span style="color: #444444; font-size: small;">Autism awareness thankfully has come a long way. You yourself are autism aware or you would not be reading this. The next step on the journey is Acceptance, and that begins with LISTENING to those on the spectrum and respecting their wishes as a community. Here is a guide for non-autistics, by no means comprehensive, on how to start being truly accepting. It has been compiled from my own experience and from suggestions from autistic people themselves. You are sure to read at least one thing that surprises you. </span></h3>
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<i><span style="color: #444444; font-size: small;">Lets start with a word from the title of this guide.</span></i></div>
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<b><u><span style="color: #444444;">''<span style="font-size: small;">Allistic</span>''</span></u></b></div>
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<li><span style="color: #444444; font-size: small;">Labels are usually a bad thing. However, there are times when communicating that it is necessary to use adjectives or labels to help get the idea across properly. If you are not on the spectrum, you likely have never heard of the label 'Allistic'. It is a term coined within the autism community to denote someone that is NOT on the spectrum. At one point 'neurotypical' was the common label used in place of the smug and repugnant 'normal'. Neurotypical is a term from psychology that in effect means normal development- no known disorder. However, this then leaves out pretty well the whole human population. Everyone has some challenge to cope with. Perhaps you are bi-polar, or claustrophobic, if so you are not neurotypical. Perhaps you are an alcoholic, or maybe something as 'benign' as afraid of spiders. If so, you are NOT neurotypical. So the term itself as a denoter of someone not autistic was actually a misnomer. Within the autism community the label neurotypical was shortened to NT and eventually became a slur as opposed to a way to differentiate and describe when communicating a thought. This led to a movement within the community to come up with a label for non-autistics that was not derogatory and was inclusive of ALL who are not autistic. Hence ALL- ISTIC. IF you are using the term NT for yourself, or your non-autistic children you are actually degrading yourself. </span></li>
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<span style="color: #444444; font-size: small;"><b><u>Autistic vs With Autism</u></b></span><br />
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<li style="text-align: justify;"><span style="color: #444444; font-size: small;">This is quite the bone of contention. And it is not simply a disagreement over semantics. In overwhelming numbers autistic people, both verbal and non verbal have emphatically indicated they prefer 'autistic' over 'with autism'. They feel that autism is an innate part of their personality, not something they are 'afflicted with'. People first language is what we are all taught is politically correct, but there is nothing more politically INCORRECT than telling an entire population that their preferred moniker is wrong. When a person directs you to a different descriptor of themselves, RESPECT them. Do not tell them they are wrong or don't know better. That is the opposite of acceptance. In this case, the vast majority prefer 'autistic', so you should start with that, and switch if a person asks you too, not the other way round. I once heard someone put it this way, 'You wouldn't say a person with left-handedness. Well autism is just as much a part of who I am as being left-handed. If I were not autistic I would not be the same person. I do not HAVE autism. A left handed red haired autistic is who I am '' . </span></li>
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<u style="color: #444444; font-size: medium;"><b>Autism Speaks</b></u></div>
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<li><span style="color: #444444;">Without Autism Speaks we would not have gained the awareness we have today this quickly, and they have some wonderful programs. But to Autistic People and those who love them, Autism Speaks is the devil incarnate. They are an organisation whose main mandate is to find a cure. Would you want someone to 'cure' you of your personality? Autism IS pervasive in that it is evident in every aspect of a persons life. So to 'cure' it would mean completely altering a huge segment of the population. If we 'cure' autism we would not have Bill Gates, or Mozart, or Einstein, or or or. To eliminate autism would be to eliminate some of the greatest minds on earth. Finding ways to make society more accepting, ways to alleviate the extreme anxiety or help the sensory challenges that some autistic people face (like my own son) is of greater importance. I personally cannot imagine my life without my sons. Both have autism, both have different challenges. One is in college, and one will need care for life. A 'cure' would mean neither of my boys would be here. And who knows what profound effects they will have on the world. I can tell you, they have had a profound impact on me. Made me whom I am. What kind of world would this be if we eradicated those who are 'different'. It was once acceptable to try to 'cure' people of homosexuality. It was once acceptable to try to 'cure' people of left-handedness. It was once acceptable to try to eradicate , well, fill in the blank. People are people. And need to be seen that way and that way alone. A 'disorder' is not a 'disease' and therefore cannot be cured. TO 'cure' a disorder, you eradicate it. To advocate a cure is seen, understandably, as advocating genocide. Autism Speaks has also refused to allow autistic people onto their board of directors. How can an organisation the purports to support a population refuse to allow those FROM that population onto their board? They also have an EXTREMELY high paid board. Their expenses eclipse those of any other organization with a mere pittance going to the population they 'serve'. I could go on, but I won't. I simply advise you NOT to support Autism Speaks until they change their mandate. At the very least DO NOT speak to an autistic person about Autism Speaks, unless you are ready for a diatribe.</span></li>
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<span style="color: #444444;">'<b><u>Cure</u></b>'</span></div>
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<li><span style="color: #444444;">see Autism Speaks. Also go to this website, <a href="http://bancdmms.com/" target="_blank">bancdmms.com</a> to see how horrible pushing autism cures can get. Ban Chlorine Dioxide/MMS is a website dedicated to the stopping the horrible and world wide new trend of administering bleach, orally or rectally, to children to 'cure' them of autism.</span></li>
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<span style="background-color: white; color: #141823; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px; text-align: left;"><b><u>Âû</u></b></span></div>
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<li style="text-align: justify;"><span style="color: #444444; font-size: small;">What does </span><span style="background-color: white; color: #141823; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px;">Âû placed at the end of a person's name mean? Autistic Union. And what does THAT mean?</span><span style="color: #444444; font-size: small;"> I will let the </span><span style="background-color: white; color: #141823; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px;">Âû</span><span style="color: #444444; font-size: small;"> <a href="https://www.facebook.com/AutisticUnion" target="_blank">facebook</a> page explain it as they do it perfectly!</span></li>
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<span style="background-color: white; color: #141823; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 20px; text-align: left;"><span style="font-size: small;">''The Suffix ‘Âû’ is used by autistics, friends, families and supporters of those living with autism within the Autistic Community. It is fast becoming an international symbol representing autism advocacy, autism pride and acceptance. Many autistic groups and pages have adopted Âû within their titles and it is fast becoming an internationally recognised symbol.</span></span></blockquote>
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<span style="color: #444444;"><b><u>Light It Up Gold</u></b></span></div>
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<li><span style="color: #444444; font-size: small;">Light it Up GOLD, not BLUE. Yes, that is right. Light It Up Blue is a fundraising initiative for Autism Speaks. The funds raised do not go to excellent organisations like The Geneva Centre For Autism in Toronto, or directly to families in Autism Households. They go directly to Autism Speaks. Blue is the brand colour for Autism </span><span style="color: #444444; font-size: small;">Speaks. It isn't, and never was, the symbol of Autism. Autistic</span><span style="color: #444444; font-size: small;"> people around the world have spoken loud and clear, they do not want to be associated with Autism Speaks. Why gold? The elemental symbol for gold is AU. see above.</span></li>
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<span style="color: #444444;"><b><u>Vaccines</u></b></span></div>
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<li><span style="color: #444444;">Just don't go there.</span></li>
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<span style="color: #444444;"><b><u>Spock-itis</u></b></span></div>
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<li><span style="color: #444444; font-size: small;">Autistic people are often thought of as having less emotion, being more logical. And while yes, logic and routine are quite important to most autistic people, that does not diminish their emotions. Autistic people are not Vulcan. They FEEL. Just like you or I. They may just express it differently. </span></li>
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<span style="color: #444444;"><b><u>Stim</u></b></span></div>
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<li><span style="color: #444444; font-size: small;">Ever drum your fingers on the table when bored? Wrap your arms around yourself when upset? Tap your toe when impatient? That is self stimulatory behaviour. STIM or STIMMING for short. If you were upset, and hugging yourself and someone came along and forced you to keep your arms at your side, your sadness would turn to anger, and instead of self soothing you would end up more upset than when it all started. STIMs are the same for autistic people. The reasons they need to STIM may differ from yours, and the ways they do may seem unusual, but it is the same process. Just as you wouldn't want someone to stop you from hugging yourself when you are down, you shouldn't stop a person with autism from stimming. Instead, you should be trying to find out the cause of the STIM and if the cause is something unpleasant, DO SOMETHING ABOUT IT. Don't punish the person. STIMMING is their way of self soothing, and is also a way to communicate to the world that something is upsetting or hurting them, or something is making them happy or excited. The same as it is when you or I do it. If you slapped my hand when I was biting my nails, I can tell you I'd be quite angry. If you saw me biting my nails and asked 'is everything ok' there would be a happy ending. Extend that same courtesy to an Autisitc person and their stims.</span></li>
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<span style="color: #444444;"><b><u>SPD</u></b></span></div>
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<li><span style="color: #444444; font-size: small;">if you google SPD you will find references to </span><span style="background-color: white; color: #545454; font-family: arial, sans-serif; font-size: x-small; line-height: 1.4;">symphysis pubic dysfunction. That is NOT what is being referrred to when someone form the autistic community uses the term. </span><span style="color: #444444; font-size: small;">Within the autism community SPD means Sensory Processing Disorder and everyone with Autism has it in some form or another (as do some allistics) Perhaps soft textures in their mouths, or noises, or light touch, are painful to them. Perhaps flashing lights, or crowds of unpredictable people create great anxiety. These are examples of SPD. When you see an Autistic person in meltdown, you can almost always point the finger at SPD. To delve further, imagine you are standing. You want to sit down on a chair. So you do. Without looking you know when you are going to hit the chair. Or walking through a doorway, you do not have to think to make sure you don't hit the door frame. You just go through. Many people with Autism have difficulty with this type of thing, called </span><a href="http://en.wikipedia.org/wiki/Proprioception" style="color: #444444; font-size: medium;" target="_blank">proprioception</a><span style="color: #444444; font-size: small;">. They may just drop down like a ton of bricks into a chair, because they do not have the proprioceptive ability to know where the chair is. Or the door frame. Imagine being in a crowd with out awareness of where other people or objects are in relation to yourself. It would be like being blindfolded. Any slight touch, a scarf blowing against you as someone walked by, the leaves of a bush you were walking past, would startle you. unnerve you. Imagine living like that and you may start to understand why anxiety is such a common issue for autistic people. And you may just be a little more understanding next time you see someone having great difficulty making themselves walk through a door way, or having a meltdown</span></li>
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<span style="color: #444444;"><b><u>Meltdown</u></b></span></div>
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<li><span style="color: #444444; font-size: small;">A meltdown is not a tantrum. A tantrum is a display of anger or displeasure meant as a manipulation to obtain the preferred</span><span style="color: #444444; font-size: small;"> item or activity. It is a power play. A tantrum is best dealt with by ignoring, not giving in, not giving attention. A meltdown is a complete loss of control brought about by extreme anxiety, usually triggered by SPD. A meltdown will not stop until the person has exhausted themselves or the cause of the meltdown is removed. A meltdown is a cry for help, not bad behaviour. Never ever punish a meltdown. ALWAYS try to figure out what brought it on so that you can help the person avoid that pain again. </span></li>
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<span style="color: #444444; font-size: small;"><u><b>Low Functioning</b></u></span></div>
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<li><span style="color: #444444; font-size: small;">There is a commonly held belief</span><span style="color: #444444; font-size: small;"> that a person who is non-verbal and has behavioural problems is low functioning. Non-verbal does NOT mean low functioning. I have friends throughout the world who are non-verbal with whom I have the greatest and most mind blowing conversations with. Once you get past the idea that TALKING is the only form of communication you will see people in a new light and never think of non-verbal as low functioning again. As for behaviour, when you are living with extreme anxiety. Anxiety powerful enough to render you non verbal, would you not act out? Look up </span><a href="http://carlysvoice.com/home/aboutcarly/" style="font-size: medium;" target="_blank">Carly Fleischmann</a><span style="color: #444444; font-size: small;"> et al. You'll never use the term low functioning again. </span></li>
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<span style="color: #444444; font-size: small;"><b><u>Autistic people never lie</u></b></span></div>
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<li><span style="color: #444444; font-size: small;">Absolutes like this are never a good idea. Absolutes assume each and everyone is the same, rather than individuals, with individual thoughts and feelings. Autistic people rarely have an internal voice. Meaning if they think it, they say it. Being blatant however does not mean everything you say is die hard fact. An autistic person is just as capable of lying as you are, they are however much more likely to say a truth that you might suppress. </span></li>
<li><span style="color: #444444; font-size: small;"><br /></span></li>
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<span style="color: #444444; font-size: small;"><b><u>Savantism/Rainman</u></b></span><span style="color: #444444; font-size: small;"> </span></div>
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<li><span style="color: #444444; font-size: small;">The most generous estimates state that 10 percent of autistic people are savants. But it must be understood that documented true savantism, ie genius level in a particular area while facing extreme challenges in others, is generally understood to be limited to less than 20 living people on earth at any time. So no, my son is NOT a genius at something, but he is an amazing son. Assuming all people with autism have savant skills is insulting those who don't, which, from the numbers I just mentioned, would leave MILLIONS of people, and their families, offended. The opposite assumption is just as bad. Assuming an autistic person is without skill is just as bad as being disappointed that they are not super-human. Autistic people are PEOPLE. Plain and simple.</span></li>
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<h3>
<span style="color: #444444; font-size: small;"><i>Are you an Autistic person and want to communicate something to allistic people (no bashing please, that doesn't help acceptance) or an allistic person who has a question (ditto), please comment below! </i></span></h3>
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<span style="color: #444444; font-size: small;"><i>Lets keep this conversation OPEN!</i></span></h3>
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Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com2tag:blogger.com,1999:blog-5140377992309987962.post-31150127519021255032014-09-16T08:52:00.001-07:002015-02-01T09:13:44.569-08:00Single Life and the Autism Household<div style="font-family: Helvetica, FreeSans, 'Liberation Sans', Helmet, Arial, sans-serif; font-size: 15px; line-height: 20px; margin-bottom: 1em; margin-top: 1em;">
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<span style="color: #444444;">Human beings are built to be paired off. At some point you seek companionship, in one form or another. Getting out there for the first time after a divorce can be a difficult hurdle to overcome, and finding the right person may seem like an impossibility. Eventually though, at your own pace, you do get out there. You start living life again.</span></div>
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<i><span style="color: #444444; font-size: large;">But how does that work in an Autism Household?</span></i></div>
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<span style="color: #444444;">When you are the single head of an Autism Household, things are quite different. Routine is so important that you cannot vary, by even a few minutes. So how do you find time to get out and meet people? You cannot just 'hire a babysitter'. You need to secure a respite worker, at a bare minimum of $15-$20 per hour (and that's if you have an EASY kid). If your child is a wanderer, as most autistic children are, or non-verbal. the fear for their safety when leaving them in someone else's care can be overwhelming. </span></div>
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<span style="color: #444444;">Family may be well meaning, but they can rarely cope with the challenges you and your child face each day, so those offers of help fade away</span></div>
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<span style="color: #444444;">If you are able to get a break, perhaps the other parent gets them every other weekend, then there are other concerns. (sadly, this is not the norm in Autism Households. The 'norm' is one parent disappears off the map while the other parents alone, without a break)</span></div>
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<span style="color: #444444;">IF you are able to get back on the market,</span></div>
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<span style="color: #444444;">Just <i>WHEN</i> do you mention autism?</span></div>
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<span style="color: #444444;">I personally have tried every approach.</span></div>
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<span style="color: #444444;">Right from initial contact, which usually does not work as it tends to push the prospective suitor away. They end up seeing a label, not people.</span></div>
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<span style="color: #444444;">I've tried later on in the mating dance. Rarely does this work, nor is it fair, as the person has developed feelings for you but may not be up to the challenge of dating (or more) a person with autistic children. They will never admit to this, of course. Maybe not even to themselves. It actually isn't because they're a bad person. Everyone has limits to what they can and cannot deal with in a relationship. Psycho ex-wives are one of those limits for me, but so is living further apart than public transit will facilitate (even though I drive) because it just ends up becoming a chore to see each other. That doesn't make me a bad person, its just knowing myself well enough to know there are certain challenges within a relationship that are difficult for me to get past. For some people, a life as unique as that in an Autism Household is so foreign, and therefore so intimidating, that they just can't do it. No matter how they feel about you. Waiting until feelings have developed before bringing up the fact you live in an Autism Household quite frankly isn't fair. </span></div>
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<span style="color: #444444;">So where does that leave you? </span></div>
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<span style="color: #444444;">I have found the BEST way is when it comes up naturally in conversation, and it will. For me it is often when talking about chatting on the phone. I will message that I have an autistic son who makes happy sounds, and can be quite loud, so I will call after Xpm when he is asleep. This explains WHY I can't call before that time and sets the stage for any conversation.</span></div>
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<span style="color: #444444;"><br></span></div>
<span style="color: #444444;">OK, so lets say you've gotten to the point you have met someone.</span><br>
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<span style="color: #444444;">It takes a tremendous amount of patience to date someone heading an Autism Household. Your developing relationship is different from anything they have experienced before.</span></div>
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<span style="color: #444444;">It takes much longer for a parent in an autism household to bring an outsider into their home, let alone introduce someone to their children. Our kids need routine out the wazoo. If something messes with that routine they don't just get pouty, it can send them into a terrible tailspin. So not only is it a MAJOR transition to bring you INTO our lives, but we also have to think about what will happen if you EXIT our lives. We will have no time for ice cream and wine after a break up if you have had any interaction with our children. We will be too busy with wilbarger protocol and sensory diets and keeping our child's anxiety in check, anxiety thrown into a tailspin from the change in routine with you gone. That's not fair to them, or us, and once you've been through that you are quite hesitant to go through it again. So you likely will not be interacting with our children, or coming into our homes, for a considerable length of time. This is why most relationships in the Single Autism Household fail to get off the ground. Because we either cannot accept the risk of introducing someone to our home then losing them, or they cannot understand our hesitance.</span></div>
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<span style="color: #444444;"><br></span></div>
<span style="color: #444444;">We have to cancel.</span><br>
<span style="color: #444444;"><br>
A LOT.</span><br>
<span style="color: #444444;"><br>
And with very little warning.</span><br>
<span style="color: #444444;"><br>
Perhaps the neighbour parked their car 2 feet east of where they normally do. Perhaps there was a fire drill at school. Perhaps someone rang the door bell. Perhaps Perhaps Perhaps.</span><br>
<span style="color: #444444;"><br>
All of these seemingly innocuous events could bring on a full on meltdown for our child, and we will not be able to keep the date</span><br>
<span style="color: #444444;"><br>
Meltdowns</span><br>
<span style="color: #444444;"><br>
</span><br>
<div style="text-align: justify;">
<span style="color: #444444;">Meltdowns are a complete loss of control. They ARE NOT a temper tantrum. It is anxiety spirally down to a horrible place or pain from sensory overload that is very difficult for an autistic person to get out of. They cannot 'just stop' . It is terrible for the person in meltdown, and for those who love them and seek to help. A meltdown is not for the uninitiated. </span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<span style="color: #444444;">Nor are the stares and comments of passer by.</span><br>
<span style="color: #444444;"><br>
It is not easy for us to deal with that, it hurts, even though we are used to it. So imagine just suddenly being dropped into that scenario. To be helpless. To not be able to help you or your child, to not know what to say or do. Most prospective partners, if they lasted this long, grow distant under the strain.</span><br>
<span style="color: #444444;"><br>
Eventually they find a reason to leave.</span></div>
<div style="font-family: Helvetica, FreeSans, 'Liberation Sans', Helmet, Arial, sans-serif; font-size: 15px; line-height: 20px; margin-bottom: 1em; margin-top: 1em;">
<span style="color: #444444;">And then we're alone again</span></div>
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<div style="text-align: justify;">
<span style="color: #444444;">The only unions I personally have seen succeed (other than something casual) are those wherein the new mate has autism in the mix as well, or has a child with a developmental or physical challenge of their own. I have yet to meet a single autism parent in a long term relationship or who has remarried where the partner did not fall into one of those 2 categories. </span></div>
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<div style="text-align: justify;">
<span style="color: #444444;">Most of us go through a period of thinking 'what's wrong with me?', and then 'what's wrong with all of THEM'. Eventually you come to realise you will spend your life as a single parent until your autistic child is no longer living at home. At first that makes you angry, very angry. Not with your child, but with the world. Bitter that the world cannot see past the outer layer of the challenges of an Autism Household and see the beauty and joy and love that we have in abundance in our homes. The wonderfully unique window on the world, and the knock you off your high horse learn what is truly important kinda life we lead. Eventually, once you see how prevalent long term singledom is amongst Autism Parents, once you see that it is not just YOUR situation, you come to terms with it. It is just another of the many commonalities unique to Autism Households. </span></div>
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<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">Yes, human beings need to pair off, that need does not just disappear simply because you are heading an Autism Household. Most of us however, will go decades or longer without that companion in our lives. Some see that as a tragedy but it isn't. It is what it is and that is all. Just another aspect of our autistic homes. Our lives are filled with learning each and everyday. Without the pressures of managing a relationship you will get to know yourself extremely well. Something most people strive for, but rarely achieve. You, and your view of life will grow considerably during your un-partnered time. Remember also that you are not truly alone at all. Not even CLOSE to being alone. Divorce rates in Autism Households average in the 90% range. And yes, once there is a split, no matter the intentions of both, the non-custodial parent often ends up fading out of the picture completely. That means that there are a LOT of people out there in EXACTLY the same situation as you. Search them out. Find others who are single raising autistic families. Laugh with each other. Cry with each other. And know that even though you often get lonely, you are never alone. </span></div>
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<h2 style="text-align: center;">
<span style="color: #444444;">
In the end what it comes down to is that our children and the lives we lead are uniquely beautiful! </span></h2>
<h2 style="text-align: center;">
<span style="color: #444444;">
Don't fret over the lack of a partner. </span></h2>
<h2 style="text-align: center;">
<span style="color: #444444;">
Just sit back and enjoy the ride!</span></h2>
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Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com1tag:blogger.com,1999:blog-5140377992309987962.post-77515410033302411142014-09-14T10:34:00.000-07:002014-09-23T08:37:34.768-07:00Its a Small World After All : How People Around the World are Uniting to Protect Autistic Children from being Poisoned<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: justify;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-Eu8WZimjQuo/VA8yFxHsPNI/AAAAAAAADEE/kX9KRl85uj0/s1600/963781_10151802872673454_907623520_o%2B-%2BEdited.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="color: #444444;"><img border="0" src="http://2.bp.blogspot.com/-Eu8WZimjQuo/VA8yFxHsPNI/AAAAAAAADEE/kX9KRl85uj0/s1600/963781_10151802872673454_907623520_o%2B-%2BEdited.jpg" height="496" width="640" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="http://waynepollard.blogspot.ca/" target="_blank"><span style="color: #444444;">photo courtesy of Photography by Wayne Pollard</span></a><br />
<span style="color: #444444;"><br /></span>
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<span style="color: #444444; font-family: Times, Times New Roman, serif;"><i style="font-weight: normal;">Sometimes being heroic is not one person doing an extraordinary thing. </i><i>Sometimes being heroic is actually a large group of people coming together to make the world a safer place. </i></span></div>
<div style="text-align: center;">
<span style="color: #444444;"><i><span style="font-family: Times, Times New Roman, serif;"><br /></span></i>
<i><span style="font-family: Times, Times New Roman, serif;">This is one such story of heroism</span></i></span></div>
<div>
</div>
</td></tr>
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<i><span style="color: #444444; font-family: Times, Times New Roman, serif;"><span style="text-align: justify;">The autism community is vast. Recent studies have suggested that 1 out of every 68 children aged eight will have a diagnosis of autism. That means that chances are VERY LIKELY that you will know, love, care for or even </span><span style="text-align: justify;">are</span><span style="text-align: justify;"> </span><span style="text-align: justify;">yourself</span><span style="text-align: justify;"> an autistic person. As with any emerging 'minority' group fighting for its rights, there are many divisions within the autism community. That divisiveness takes away from all the accomplishments and the huge strides we've made in awareness and acceptance. </span></span></i></td></tr>
</tbody></table>
<div style="text-align: justify;">
<span style="color: #444444;"><br /></span></div>
<div style="text-align: center;">
<b><span style="color: #444444;">SO instead, today, I want to talk about something that is UNITING the autism community, worldwide.</span></b></div>
<div style="text-align: center;">
<span style="color: #444444;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #444444; font-family: Times, Times New Roman, serif;"><i>But</i> I have to start by way of bringing up a controversy. </span></div>
<div style="text-align: center;">
<span style="color: #444444;"><br /></span></div>
<div style="text-align: center;">
<span style="color: #444444; font-family: Times, Times New Roman, serif;">I have to use a four letter word, well two actually.</span></div>
<div style="text-align: center;">
<span style="color: #444444;"><br /></span></div>
<div style="text-align: center;">
<b><span style="color: #444444;">FEAR</span></b></div>
<div style="text-align: center;">
<span style="color: #444444;"><br /></span></div>
<div style="text-align: center;">
<i><span style="color: #444444; font-family: Times, Times New Roman, serif;">and</span></i></div>
<div style="text-align: center;">
<span style="color: #444444;"><br /></span></div>
<div style="text-align: center;">
<b><span style="color: #444444;">CURE</span></b></div>
<div style="text-align: center;">
<span style="color: #444444;"><br /></span></div>
<div style="text-align: justify;">
<i><span style="color: #444444; font-family: Times, Times New Roman, serif;">Now whatever your opinions on the matter, I would like you to put them aside, because although this story has at its route horrible abuse happening in the name of a 'cure', it is in truth about those fighting to protect our children from being poisoned.</span></i></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br /></span></div>
<div style="text-align: justify;">
<span style="color: #444444; font-family: Times, Times New Roman, serif;"><i>And that is something that should not be attacked. This worldwide movement should, and will, be lauded.</i></span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br /></span></div>
<h4 style="text-align: center;">
<u><span style="color: #444444; font-size: large;">Let the story begin</span></u></h4>
<div style="text-align: center;">
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<span style="color: #444444;"><br /></span>
<div style="text-align: justify;">
<span style="color: #444444;">A wonderful woman I know through a Facebook autism group shared information with me on Chlorine Dioxide, sometimes referred to as Mineral Miracle Supplement (<i>MMS</i> or, <i>Mineral</i> <i>Miracle</i> <i>Solution</i> as it was renamed after the US FDA threatened legal charges). Like most people, I figured it was an internet scam. A hoax. A story told to get 'clicks' , 'likes' and 'shares'. But a few other friends started talking about it too. </span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br /></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">People around the world were (and still are) using a home-made (because it is illegal to buy) bleach compound and either feeding it to, or using it as an enema on, their young children with autism in an effort to cure them. I could not believe this was real. But it was, and is. There are many Facebook groups dedicated to helping parents 'recover' their child with this banned substance. They console each other, encourage each other to continue even when their children are covered in rashes, vomiting up blood and have severely high fevers lasting days. They tell each other this is the 'poison' being eliminated from their child's body, rather than the signs of CD poisoning they truly are. They post pictures of their child's feces, filled with mucous, proud that they are getting rid of 'parasites' in their children , when in fact it is actually the intestinal wall being broken down and excreted.</span><br />
<span style="color: #444444;"><br /></span>
<span style="color: #444444;">Why, you rightfully ask, would any parent in their right mind do this?</span><br />
<span style="color: #444444;"><br /></span>
<span style="color: #444444;">Because of 2 people. Jim Humble and Kerri Rivera.</span><br />
<span style="color: #444444;"><br /></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">Jim Humble is a quack.</span><br />
<span style="color: #444444;"><br /></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">He has reported in various venues over the years that he has cured cancer, AIDS, and more with this bleach concoction. His outlandish claims, even to the point of creating his very own 'church', leave him fairly easy to distinguish as a quack, and so most people avoid him. </span></div>
<div style="text-align: justify;">
<span style="color: #444444;">But then there's Kerri Rivera. </span></div>
<div style="text-align: justify;">
<span style="color: #444444;">Who wrote a book. </span><br />
<span style="color: #444444;"><i>Healing</i> <i>The</i> <i>Symptoms</i> <i>Known</i> <i>as</i> <i>Autism</i>.</span><br />
<span style="color: #444444;">Kerri opened a clinic in Mexico (as it is illegal to use CD/MMS in the US) and claims to have 'recovered' upwards of 110 children from autism (not her OWN autistic child, however). Kerri's book is available on Amazon. for anyone who hasn't done due diligence, to buy. Kerri, unlike Jim Humble, makes only the claim to cure autism, not every other disease, condition, disorder and personality known to mankind. She presents it in a slick, well marketed campaign, flaunting her book on autism sites and groups, preying upon, and even inciting, the fears all parents have for their children's futures, asd or not, but then uses autism as a death sentence, and a preventable one at that. Parents, now afraid for their children, end up trying Kerri's treatments. When scared by the horrible results they see, they turn to these groups where they are shamed if they make any mention of wanting to ease off, let alone stop. These parents are being manipulated in order for an author to sell her book. These parents are being convinced to FEED THEIR CHILDREN BLEACH simply to make someone some money.</span></div>
<div style="text-align: justify;">
<span style="color: #444444;">An author has the right to free speach, so how do you help stem the tide of child abuse that Jim Humble and Kerri Rivera have encouraged with their writings? You can't yank their works off the shelves.</span></div>
<span style="color: #444444;">So what do you do?</span><br />
<span style="color: #444444;"><br /></span>
<span style="color: #444444;">You join together to make sure all parents KNOW what these people really are selling them (and thats exactly what it is, a SALE, not a CURE)</span><br />
<span style="color: #444444;"><br /></span>
<div style="text-align: justify;">
<span style="color: #444444;">People from all corners of the earth got together to review to Kerri Rivera's book on Amazon. They cited scientific facts, disputed all the claims made in the book, and have hopefully given pause to anyone considering buying the book. Hopefully before a parent purchases the book they will be motivated to do their own research thanks to these numerous and intelligent reviews.</span></div>
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<span style="color: #444444;"><br /></span></div>
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<a href="http://3.bp.blogspot.com/-YqNDI-KRdus/VBW_mwVhniI/AAAAAAAADEM/U5Bd2Trzn5w/s1600/10151993_10204904755926548_7646354986369378016_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="color: #444444;"><img border="0" src="http://3.bp.blogspot.com/-YqNDI-KRdus/VBW_mwVhniI/AAAAAAAADEM/U5Bd2Trzn5w/s1600/10151993_10204904755926548_7646354986369378016_n.jpg" height="200" width="150" /></span></a></div>
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<span style="color: #444444;"><br /></span>
<div style="text-align: justify;">
<span style="color: #444444;">Families in Ireland created a <a href="http://www.change.org/p/irish-government-and-authorities-stop-the-use-of-cd-and-mms-as-a-treatment-for-autism-in-ireland-end-child-abuse-of-autistic-children-and-adults?share_id=OQfhhIQkZb&utm_campaign=share_button_action_box&utm_medium=facebook&utm_source=share_petition" target="_blank">petition</a> that is now being signed by people all around the world. <a href="http://www.jillianvanturnhout.ie/" target="_blank">Senator Jillian Van Turnhout</a> (independent member of the Irish Senate), a fierce supporter of the rights of children and advocate for their safety recently wrote an article voicing her concerns over CD/mms. In response to a query from Days of Whine and Rosé</span><br />
<span style="color: #444444;"><br /></span>
<blockquote class="tr_bq">
<i><span style="color: #444444;"><span style="font-family: sans-serif; font-size: x-small; text-align: start;">"I am extremely concerned about the administration of the MMS Protocol, a toxic combination of chemicals in the so-called treatment of children with autism. Desperate parents with vulnerable children are being preyed upon by a growing worldwide industry offering unsubstantiated and frankly dangerous interventions for</span><span style="font-family: sans-serif; font-size: x-small; text-align: start;">Autistic Spectrum Conditions</span><span style="font-family: sans-serif; font-size: x-small; text-align: start;">. Parents must be warned of the dangers and Parliaments must respond appropriately to protect children." Senator Van Turnhout</span></span></i></blockquote>
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</div>
<span style="color: #444444;"><br /></span>
<span style="color: #444444;">Even the main stream media in Ireland has also picked up on the uproar, something yet to occur in North America.</span><br />
<span style="color: #444444;"><br /></span>
<span style="color: #444444;"><iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/iBA8cVjrcS8" width="420"></iframe>
</span><br />
<span style="color: #444444;"><br /></span>
<span style="color: #444444;"><br /></span>
<div style="text-align: justify;">
<span style="color: #444444;">The UK seems to be far and ahead of the rest of the world in publicly recognizing the dangers of CD/MMS. In Wales, Rhys Morgan, just a young man himself, has been advocating for the banning of the cd/mms 'cure for all ails', and was part of an expose on bbc's 'The One'</span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br /></span></div>
<span style="color: #444444;"><iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/R0yUYOz62wk" width="560"></iframe>
</span></div>
<span style="color: #444444;"><br /></span>
<span style="color: #444444;">The UK isn't the only place in Europe where you will find heroes in the fight against CD/MMS. A group in Germany has set their mandate to alert and inform. To whit:</span><br />
<span style="color: #444444;"><br /></span>
<ol>
<li><span style="color: #444444;"><span style="font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 19.3199996948242px;">Educate the general public about MMS and its dangers. Not merely online, also in conversation with authors of TV shows and editors of newspa</span><span class="text_exposed_show" style="display: inline; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 19.3199996948242px;">pers and magazines. We jump in whenever something about MMS is written or broadcast.</span></span></li>
<li><span style="color: #444444;"><span style="font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 19.3199996948242px;">Alert the authorities. In Germany, we have a strict drug law which regulates that medicines may only be licensed after clinical studies that often last 10 years or more. MMS is, of course, not licensed, and therefore is being sold under the disguise of water treatment. So, the assertions made by Humble, Rivera & Co to have cured persons with MMS from ailments are a legal </span><span style="font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 19px;">offence.</span></span></li>
<li><span style="color: #444444;"><span style="font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 19.3199996948242px;">"Pull<i> </i>the<i> </i>cash<i> </i>plug<i>“. (</i></span><span style="font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; font-style: italic; line-height: 19px;">They</span><span style="font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; font-style: italic; line-height: 19.3199996948242px;"> have already accomplished much in this area: and Amazon have pulled MMS as a product on their sites thanks to this groups advocacy)</span></span></li>
</ol>
<span style="color: #444444;"><br /></span>
<span style="color: #444444;"><br /></span>
<span style="color: #444444;">Although the compound itself is illegal, there are many many MANY groups that will tell you WHERE to order the individual ingredients on line. So in an effort to counteract that people all over the world are creating Facebook groups, from every culture and in every language imaginable, to help spread awareness of this potentially deadly 'protocol' ( <a href="https://www.facebook.com/groups/781816025196733/" target="_blank">Islamic</a> and <a href="https://www.facebook.com/groups/188906004514824/" target="_blank">Spanish</a>, to name just a two ). These groups are motivated to help spread information and awareness of the dangers, and to help stymie the efforts of those selling the products or deifying Jim Humble and Kerry Rivera. Stymie efforts like this video, where Kerri Rivera herself teaches you how to 'safely' make this dangerous compound in baby bottles for your infant!</span><br />
<span style="color: #444444;"><br /></span>
<span style="color: #444444;"><iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/W0SzMMSSFGA" width="560"></iframe> )
</span><br />
<span style="color: #444444;"><br /></span>
<span style="color: #444444;"><br /></span>
<span style="color: #444444;">All these efforts are not in isolation.</span><br />
<span style="color: #444444;"><br /></span>
<span style="color: #444444;">People from Australia, Canada, The UK, The USA, Africa and more banded together to create the <a href="http://bancdmms.com/" target="_blank">Ban Chlorine Dioxide /MMS as Autism Therapy</a> website. Created, contributed to and run by both autistic and allistic people with the common goal of saving children from this horrific 'protocol'. They raise money amongst themselves to fund the site, volunteer their time and energy researching the status of CD/MMS in various countries and donate their time to keep the site a going concern. When was the last time you saw such a diverse group of people banding together in a common cause? When have so many countries around our fair planet been so united?</span><br />
<span style="color: #444444;"><br /></span>
<h4>
<span style="color: #444444;">
Here's hoping that this Untied Group of Heroes can accomplish their goal. Let their fight not be in vain, for the 'victory' won is the safety of autistic children.</span></h4>
<h4>
<i><span style="color: #444444; font-size: x-small;"><br /></span></i></h4>
<h4>
<i><span style="color: #444444; font-size: x-small; font-weight: normal;">I personally am anti-cure, I have made that known before, and stand by it. But I am asking, PLEASE do not make this story about a fight between those who believe in a cure, and those who don't. That divisiveness will not help to advance Autism Awareness and Acceptance.</span></i></h4>
<h4>
<i><span style="color: #444444; font-size: x-small; font-weight: normal;">But stories like this, of people around the world joining together, will make a difference.</span></i></h4>
<i><span style="color: #444444; font-size: x-small;">So please, save your ire not for those who believe in a cure, but for those who make money by promoting fear, instilling the 'want' for a cure and promoting the poisoning our children</span></i><br />
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<br />Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com0tag:blogger.com,1999:blog-5140377992309987962.post-80863263544668199822014-08-25T20:12:00.004-07:002014-09-23T08:37:51.319-07:00Developmental and Mental Health. Last Bastions of Acceptable Discrimination? Guest blog author: Christopher Scott Medeiros<div class="separator" style="clear: both; text-align: center;">
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<i><span style="color: #444444; font-size: x-small;">Today I turn my blog over to a very special guest writer. This is a subject near and dear to my heart, as is the author. </span></i></h4>
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<span style="color: #444444;">Developmental and mental health disorders (DMH) are the last bastion of acceptable discrimination in modern society. Discrimination based on sexual orientation, religion, creed, colour and socio-economic status still exist, but are frowned upon.</span></div>
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However it is quite acceptable to make “retard” jokes.</span></h3>
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<span style="color: #444444;">People use the word retarded (and its variations) in common lexicon without any thought to the pain that it may cause to the person beside them. The general population does not see how using a slur like the r-word can be harmful. <a href="http://www.r-word.org/" target="_blank">End The R- Word</a> is a movement organized to bring awareness to this discriminatory practice, but it is having trouble getting support outside the DMH community.</span></div>
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<span style="color: #444444;">People who disclose their mental or developmental health issues are also routinely denied paying jobs. If that happened to any other segment of society there would be outrage and charges laid <a href="http://www.camh.ca/en/hospital/about_camh/newsroom/news_releases_media_advisories_and_backgrounders/archives/2011/Pages/Eliminate-barriers-to-employment,-says-mental-health-partnership.aspx" target="_blank">*</a></span></div>
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Is this discriminatory tide turning?</span></h3>
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<span style="color: #444444;">The care and treatment of people with disabilities in Ontario has had a dark and dirty past. Recent lawsuits, including the Huronia Regional Centre class action highlight this fact. The facility was notorious for the inhumane treatment of its residents. The facility opened in 1876 far from main cities and towns, and was shut down on March 31, 2009. Parents were often forced into placing their children in institutions such as Huronia, because society did not accept, nor want, such people in their midst.</span></div>
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<span style="color: #444444;">At the time of its opening, Huronia was the first facility of its type to be located in Ontario <a href="http://www.institutionalsurvivors.com/" target="_blank">*</a>. Huronia Regional Centre was built and opened at a time when not much was known about mental and developmental health or how to care for individuals with DMH. The main result of that ignorance is that community services or supports for individuals and their families have historically received poor support. With no supports in the community and with societal opinion making it extremely challenging to keep their children at home, institutions like Huronia bulged at the seams. The province operated 16 additional facilities by the 1970’s and at its peak Huronia itself exceeded 2500 people.</span></div>
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<span style="color: #444444;">The buildings at Huronia Regional Centre were over-crowded and in terrible disrepair. Holes in the floors and walls were left unpatched and un-fixed creating a serious danger to the residents (Simmons, 1982). Rooms were locked as if the residents (never referred to as people, always referred to as residents or 'clients', as if they chose this life) were criminals in prison (Institutionalsurvivors.com, 2014). Punishments were cruel and horrific. Facility staff often forced residents to enact the punishments on each other. (Ra.ocls.ca, 2014). Residents were insulted regularly by staff. They were told that their lives were useless, that they would just be a burden on society.(Ra.ocls.ca, 2014). Residents were heavily medicated in order to control and subdue them. Rather than providing programs to educate and help residents, staff found it easier to keep them drugged up, virtually comatose. (Ra.ocls.ca, 2014). There have been many reports of sexual abuse inflicted upon residents at the hands of the facility's staff and even residents being forced to sexually assault each other for the entertainment of staff (Ra.ocls.ca, 2014) Basic health and hygiene were neglected. Residents would often go un-bathed for extended periods of time leading to infections and other medical conditions and illnesses, as well as feelings of depression and self-loathing. When a resident died at the facility they were simply buried unceremoniously behind the barn. There were no funerals. The cemetery is difficult to find, hidden. There are no grave stones or markers of any kind to honour the person laid to rest. There are simply tiny slabs of stone with numbers etched in stating the order in which the residents died. Numbers instead of names marked their last resting places. That was how they were seen, a number, not a person.</span></div>
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<span style="color: #444444;">Take a look at that photo above now, knowingly.</span></div>
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<span style="color: #444444;">Some former residents have decided to open up and publicly share their stories of their time at Huronia Regional Centre. Marie Slark was admitted as a seven year old in 1961. She recalls having her pants pulled down and made to walk around the facilities play room in front of all staff and residents for the simple infraction of speaking. (Ra.ocls.ca, 2014). One of the punishments referred to again and again by former residents is “dig for worms”. Residents, children and adults, some with the developmental age level of just a toddler, were made to lie face-down in the dirt with their hands behind their backs for up to 30 minutes for ‘infractions’ like wetting themselves while under sedation, or vomiting when sick. (Ra.ocls.ca, 2014) Gary Keefe recalls how staff often encouraged and rewarded violence from residents inflicted upon each other. (Ra.ocls.ca, 2014). They would send a resident down a human tunnel of other residents, who were encouraged, or forced, to punch, kick and spit on the person all the way through.” (Ra.ocls.ca, 2014). Barry Smith lived in Huronia from the age of twelve to the age of eighteen. He remembers being made to lay face down into a plate of food if they refused to eat. (Ra.ocls.ca, 2014). Then there is the story of my late uncle. “Phillip John Scott Pollard was born November 29th, 1952 and was admitted into Huronia in (1959) at the age of 7. Phillip had severe autism and was non-verbal. Phillip lived at Huronia for 42 years. While living there he was subjected to both physical and sexual abuse. He would often be confined or restrained so that he would be more “easily” cared for. Phillip was one of the first people removed from Huronia when it was starting the first stage of closing down. He was moved into a group home and within a year he caught the flu which took him from this world in a matter of days. Because he did not die nor lived at Huronia at the time of its closing, he and his family are not eligible to be a part of the class-action lawsuit being brought upon the Canadian government for its lack of protection to former residents of Huronia as well as 2 other facilities.” (Pollard, 2014).</span></div>
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<span style="color: #444444;">Survivors of Huronia Regional Centre along with former residents of Rideau and Southwestern Regional Centres and their families launched a class action law suit against the Canadian government. (Ra.ocls.ca, 2014) More than 65,000 documents related to the facilities and former residents are being made publicly available, with agencies like Community Living Toronto assisting with the distribution of the files. (Ra.ocls.ca, 2014) . Ontario Premier Kathleen Wynne delivered a woefully inadequate official apology in the provincial legislature that highlights once again that the rights of people with developmental and mental health disorders are not on an equal plane with the rest of society. (Ra.ocls.ca, 2014). In reference to Premier Wynne’s passing the blame for the inadequate apology onto the courts, Kirk Baert, lead counsel in the class action, said "The Premier got it wrong. She said the courts are still considering the terms of the apology. In fact, the courts have absolutely nothing to do with the apology." Further, "The Attorney General also got it wrong. I was stunned when Minister Gerretsen stood up in the Legislature and said the case had been settled quickly. I can tell you that the case took half a decade, and relates to wrongdoing going back to 1945. By any standard that is hardly 'fast'." (Ra.ocls.ca, 2014). Many people who suffered abuse at Huronia have been denied the right to participate in the class action suit for arbitrary reasons. (Koskie Minsky, LLP). One resident’s family, who fought to have their relative among the first to be re-housed when Huronia was slated to be closed, have been denied the right to sue because he is not currently living, was not living in Huronia the day it closed, and did not die in Huronia. He spent 42 years being physically and sexually abused, but his suffering is not allowed to be brought to light. Former residents and their surviving family members are also discovering that files have mysteriously disappeared from the documents that were made available (Ra.ocls.ca, 2014)</span></div>
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<span style="color: #444444;">People with developmental and mental health disorders have always been on the bottom of the list in terms of the way they are cared for, housed, and viewed by society. They have the same rights as any neurotypical person but their rights are rarely enforced. People with DMH are viewed by society as not human. Instead they are viewed, and treated, as unwanted animals, burdens. Society in general assumes that because someone has a DMH they have no value and that they do not feel emotional or physical pain. Some of the greatest minds and figures in history have been proven to have had DMH. “Isaac Newton who has been labelled with having bipolar disorder, even Abraham Lincoln who was the 16th president of the United States suffered from severe and debilitating depressions that sometimes led to suicidal thoughts.” (Gsappweb.rutgers.edu, 2014). There is conjecture that Benjamin Franklin, Glenn Gould, Albert Einstein, Bill Gates and Mike Lazaridis are all on the autistic spectrum. These brilliant figures have contributed greatly to society despite DMH. Some would argue their brilliance was actually a direct result of their individual diagnoses.</span></div>
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<span style="color: #444444;">It is sickening to think that even though such brilliant figures had developmental or mental health disorders that people with DMH today are still treated as lower class citizens. There is a drastic need for change and reform in the way they are housed, cared for and viewed by society. People like Marie Slark, Gary Keefe, Barry Smith and Phillip John Scott Pollard should not have to suffer the indignities and tribulations that they have been through. They should not be hidden away from society just to make life more comfortable for the rest of society. They should be given the same opportunities and should have access to the same health care, rights and services as a neurotypical person, not less. They should be allowed to embrace and enjoy life and experience everything it has to offer. There have been some great strides in the way people with DMH are housed, cared for and viewed by society but there is still a long way to go. They are people with so much to offer, as long as general society allows them to participate. Autistic people such as I are now standing up and insisting that we be a part of the organizations that purport to serve and assist us. Large, well known organizations that are supposedly set up to provide support and awareness, such as Autism Speaks, actually have, within their mandate, the elimination of autism, and refuse to allow people with ASD (autistic spectrum disorder) to participate on their board. This very mandate perpetuates discrimination of people with various forms of DMH and supports the eradication of a particular segment of society. Now that we are gaining the opportunity more and more to express our cares, desires and worth, society will no longer think it is acceptable to discriminate against us.</span></div>
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One day, hopefully soon, people with developmental and mental health disorders will be seen simply as people. </span></h2>
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<i><u><span style="color: #444444;">Days of Whine and Rosè Post Script:</span></u></i></h4>
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<i><span style="color: #444444;">My brother spent 42 years of his life in Huronia. I have many many fond memories of that awful place. Why? Because they would not allow us to visit unannounced, instead we were allowed to come up for 'meetings' (my brother's room was spotless, he was clean and well dressed at these times) and for the annual picnics, which were frankly, a lot of fun! Live bands, corn roasts, games, prizes, rides, anything you could want from a 'fair'. It was a deception. A re-direction which we questioned, but for which we were always re-buffed. As a child I looked forward to out visits to Orillia. But even then, I knew something was not right. My children, my nieces and nephews all have similar memories. It was the deception. Even as small children we knew we were being 'duped'. My brother was one of the lucky ones. Our advocating as a family allowed him to be one of the first re-located to a community respite home, right here in Toronto, as Huronia was closing. </span></i></div>
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<i><span style="color: #444444;">We got him out! </span></i></div>
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<i><span style="color: #444444;">Unfortunately, while in the group home, he contracted the FLU, the same strain that killed Jim Henson killed my brother. In 5 days. </span></i></div>
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<i><span style="color: #444444;">My brother suffered sexual and physical abuse at Huronia for 42 years. But because he was not IN Huronia when it closed, is not living now, and did not die IN Huronia, his story cannot be told. Cannot be part of the class action. To the government, he did not exist. His suffering never occurred.</span></i></div>
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<i><span style="color: #444444;">But Phil has had his story told, his suffering acknowledged, in part, in this guest blog.</span></i></div>
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<i><b><span style="color: #444444;">The picture at the beginning of the post is of Phil and I, many many years ago,</span></b></i></div>
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<i><b><span style="color: #444444;">Who wrote this guest blog?</span></b></i></div>
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MY SON</span></h3>
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<i><span style="color: #444444;">Who himself has a diagnosis of Asperger's. </span></i></div>
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<i><span style="color: #444444;">My only child who actually remembers his Uncle Phil.</span></i></div>
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<i><span style="color: #444444;">I am so proud to have a son who not only wishes to honour his uncle. not only wants to ensure no one discriminates against himself or his brother, but is PROUD of who he is, and whom he is becoming. </span></i></div>
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<b><i><span style="color: #444444;">Christopher Medeiros, author of this piece, you are an inspiration to me, and an honour your entire family. </span></i></b></div>
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I am SO PROUD to be your Mom!</span></h3>
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<span style="color: #444444;">XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOX</span></div>
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Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com5tag:blogger.com,1999:blog-5140377992309987962.post-64799599890620861552014-08-21T15:28:00.000-07:002014-09-23T08:38:06.482-07:00The ADHD Mistake<h4 style="clear: both; text-align: center;">
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Asperger's Disorder is increasingly being diagnosed in adults, ruling out previous diagnoses of ADHD.</span></h4>
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So why the mistake?</span></h4>
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<span style="color: #444444;">The propensity in the past to disregard an Autism Spectrum Disorder diagnosis if a person's IQ was at or above average is by far the most common reason for misdiagnosis. There was (and still is in some communities) a huge misconception that ASD= Severe Cognitive Impairment. A child being assessed who showed 'normal' or above average intelligence was assessed differently from one who showed intellectual delay. ASD assessment never entered the picture.</span><br />
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<span style="color: #444444;">Attention Deficit Hyperactivity Disorder shares an incredible number of similar traits with PDD-Nos and Asperger's Disorder</span><br />
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<i><span style="color: #444444;">Gillberg & Ehlers (1998) point out that children who meet criteria for ADHD may also meet the full criteria for Asperger syndrome. They mention one study, in which 21% of children with severe ADHD met the full criteria for Asperger syndrome and 36% showed autistic traits. A developmental history is usually sufficient to separate ADHD from Asperger syndrome, but ADHD can present as soon as the child can walk, and it is important to consider that impulsivity can interfere with social relationships, making children appear unempathic. Indeed, children with ADHD can be so easily distracted that they appear to be in a world of their own and therefore seem socially disconnected. It is not surprising, therefore, that children with Asperger syndrome are not uncommonly misdiagnosed as having ADHD, since it is often the attention and hyperactive problems that parents first observe. "Diagnosis and differential diagnosis of Asperger syndrome" Michael Fitzgerald and Aiden Corvin</span></i></blockquote>
<span style="color: #444444;">When a child was placed before a doctor who had in their mind already ruled out ASD, the only diagnosis left was ADHD. <span style="font-family: inherit; font-size: inherit; font-weight: inherit; line-height: 1.5;">If there were family members with ASD a 'second look' at the traits</span><span style="font-family: inherit; font-size: inherit; font-weight: inherit; line-height: 1.5;"> might occur (as happened with my own son) but it was rare. In large part due to the old notion that Asperger's Disorder carried with it language delay and could not be diagnosed without such. This fallacy was corrected in the <a href="http://en.wikipedia.org/wiki/Diagnostic_and_Statistical_Manual_of_Mental_Disorders" target="_blank">DSM4</a>, but many professionals still operate under this misconception</span><span style="font-family: inherit; font-size: inherit; font-weight: inherit; line-height: 1.5;">. Small children with Asperger's disorder are quite often </span><a href="http://en.wikipedia.org/wiki/Hyperlexia" style="font-family: inherit; font-size: inherit; font-weight: inherit; line-height: 1.5;" target="_blank">hyperlexic</a><span style="font-family: inherit; font-size: inherit; font-weight: inherit; line-height: 1.5;"> and have very large verbal vocabularies. Ten years ago, a child coming into a doctors office who could carry on a full conversation with the doctor was automatically assumed to NOT be ASD. </span></span><br />
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<span style="font-family: inherit; font-size: inherit; font-weight: inherit; line-height: 1.5;">That is changing. </span></span><br />
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<span style="font-family: inherit; font-size: inherit; font-weight: inherit; line-height: 1.5;">It is now understood that ASD is truly a spectrum, a wide and varied spectrum. At one time an Autism Spectrum diagnosis disallowed you from also receiving an ADHD diagnosis. It is now well known that the two can, and often do, co-present. There is conjecture that ADHD itself is an ASD, or has common origins. Most children (or adults) who now receive a diagnosis of PPD-Nos or Asperger's Disorder also receive a secondary diagnosis of ADHD or ADHD traits. </span></span><br />
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<span style="font-family: inherit; font-size: inherit; font-weight: inherit; line-height: 1.5;">And vice versa. </span></span><br />
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<i><span style="color: #444444;">"(When referencing ADHD diagnostic criteria the) DSM-5 includes no exclusion criteria for people with autism spectrum disorder, since symptoms of both disorders co-occur" © 2013 American Psychiatric Association</span></i></blockquote>
<span style="color: #444444;">This move to allow the co-diagnosis of both disorders reflects the growing body of <a href="http://www.ncbi.nlm.nih.gov/pubmed/12187510" target="_blank">research</a> suggesting that ADHD and ASD do not just co-exist, but in fact share the same origins and are possibly members of the same family.</span><br />
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<span style="color: #444444;">So why is this important?</span><br />
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<span style="color: #444444;">Pharmacologically, it is vital to understand if a person diagnosed with an ASD is also ADD or ADHD. The attention disorder symptoms can then be treated with attention disorder tested medications, rather than the anti-psychotics generally prescribed to the autistic population that often have severe side effects</span><br />
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<i><span style="color: #444444;"> The antipsychotic drug risperidone has been approved by the FDA for the treatment of irritability in children with autism. Risperidone has a much wider and more severe set of side effects than medications used to treat ADHD. The possibility of substituting ADHD medications for antipsychotic medications in the treatment of irritability would be an important benefit for patients. Such exchanges cannot readily be made as of this time; in general, antipsychotics seem more effective for aggressive children with ADHD than are medications used for the treatment of ADHD alone. The possibility of using ADHD medications, however, merits further clinical and research consideration. Scahill and colleagues note that the improvement in hyperactivity in the children in his study was the same as was found in a sample of aggressive hyperactive autistic children treated with risperidone. "Prohibiting the diagnosis of ADHD in autism is harmful " Psychology Today</span></i></blockquote>
<span style="color: #444444;">There is also the availability of services, and how best to help our children. The family of a child assessed as ADHD who in fact is ASD will not have access to information on sensory processing disorder for example. SPD is a major contributor to the anxiety people with autism endure. Knowing about SPD, and how to help someone desensitise or find coping mechanisms is invaluable in creating a greater quality of life for everyone involved. What a shame for someone who would benefit from that to be denied that help, simply because of misdiagnosis.</span><br />
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<span style="color: #444444;">As for the adults just being re-assessed now, some may wonder, what's the point? They're adults. They have jobs, homes, lives.</span><br />
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<span style="color: #444444;">What I keep hearing from the newly diagnosed is that there is this overwhelming sense of relief. The relief that there is nothing 'wrong' with them. That they did not 'fit in' because they have ASD , not because they were misfits, or lazy, rude, or impulsive. All things they have been told over and over that they should have 'outgrown' or can 'control'. To know that it is not a failing on your part, to know there is an actual reason is a huge relief. It allows them to finally be able to reach out and connect to others who are also ASD. To know they are not alone. For many more , the fact that they have children themselves who are on the spectrum, knowing they are ASD as opposed to solely ADHD allows them to see their children in a whole new light. to realise that they UNDERSTAND their children in a way only someone who also has ASD can understand.</span><br />
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<span style="color: #444444;">Am I saying that ADHD is really a form of ASD? I have my opinion, and there are valid points to be made on both sides of the debate. One thing however that cannot be debated is that the coming years will be an interesting time in the ADHD ASD world!</span><br />
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Are you an autistic adult who was misdiagnosed as ADHD ? Tell me your story</span></h4>
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<br />Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com3tag:blogger.com,1999:blog-5140377992309987962.post-65561223751862922802014-07-22T21:03:00.000-07:002014-11-18T06:52:42.467-08:00How THIS mom reacted to an ignorant stranger many years ago, and what will come of it!!<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-AIE8ADfsZYo/U88l_80mRNI/AAAAAAAAC6I/jPJGqHG1v0c/s1600/12247846991050428798schoolfreeware_WheelChair_Sign.svg.hi.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: #444444;"></span></a></div>
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<a name='more'></a><span style="color: #444444;">Many, many years ago now, I was a young, very poor, mom, raising 3 boys on my own, two of whom are ASD.</span><br />
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<span style="color: #444444;">DAILY we would endure attacks, mainly aimed at me, from the uniformed, the uneducated. </span></div>
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<span style="color: #444444;">Those were the days when even most doctors hadn't heard the word AUTISM, when venerable institutions like The Toronto Hospital for Sick Children still had doctors telling moms like me, well not LIKE me, actually telling ME, that autism was caused by mothers, ie ME, not loving their children. </span></div>
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<span style="color: #444444;">There were no facebook groups. </span></div>
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<span style="color: #444444;">Heck, there was no GOOGLE. </span></div>
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<span style="color: #444444;">So you figured things out, on your own. </span></div>
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<span style="color: #444444;">Figuratively and literally, because, back then, with the stress of raising a child with special needs, but in particular at the time because of lack of awareness and resources, particularly if you were in an autism household, the odds were 9 out of 10 times you were a mom going it alone. completely alone. dad disappeared. </span></div>
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<span style="color: #444444;">No every other weekend off. </span></div>
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<span style="color: #444444;">Just completely alone</span></div>
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<span style="color: #444444;">My middle son was quite challenging at the time. Unfortunately there were more resources for his brothers as `siblings` dealing with life in an autism household than there were for him. </span></div>
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<span style="color: #444444;">His sensory challenges were off the charts. </span></div>
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<span style="color: #444444;">He could run anywhere, and did (he was a bolter) but he could not walk more than a step or two. </span></div>
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<span style="color: #444444;">When you run, you are on your toes, when you walk, your whole sole touches the pavement and for a much greater length of time. </span></div>
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<span style="color: #444444;">My son was in excruciating pain anytime he had to keep his foot flat on any surface, so naturally, after one or two steps, his body would crumble, he'd dissolve down to the ground.</span></div>
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<span style="color: #444444;">While he was small enough to fit in a stroller, there was no issue. but what happens to a 12 year old, who can run for miles, but cannot walk. who has no sense of personal safety, no awareness of danger, in a society that sees his challenges as a simple result of bad mothering?</span></div>
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<span style="color: #444444;">The result is no help.</span></div>
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<span style="color: #444444;"> So I saved my pennies, kept my eyes open and was finally able to purchase a wheelchair at a second hand shop. </span></div>
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<span style="color: #444444;">We didn't have a car, so if we went anywhere I had to carry my 12 year old on my back, while pushing my 4 year old in a stroller or when he was smaller. carrying him on my front in a baby bjorn, and keeping my Aspie eldest son calm. A wheelchair, with a seat belt, brought some ease physically, and allowed me some breathing room. My son was safe. And he FELT safe.</span></div>
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<span style="color: #444444;">Having boys, well, sometimes you need to just tire them out, SO one day, after a long rough week at work, I took them to the local public pool, While we were in the pool, someone stole the wheelchair I had saved my pennies for. the wheelchair i could not replace, the wheelchair that allowed all my family to get out together safely. </span></div>
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<span style="color: #444444;">That wheelchair meant the difference between us getting out as a family and me having to hire someone to help while I took Eric out and hired another someone to watch the other boys (at a time when we were accessing food banks at least once per month), well, with that, the theft of the chair was a hard blow. </span></div>
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<span style="color: #444444;">But I didn't show the boys. </span></div>
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<span style="color: #444444;">We'd had fun in the pool, they were tired, we could go home and all fall asleep peacefully. </span></div>
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<span style="color: #444444;">I lifted Eric onto my back, strapped Mark into his stroller, and Chris hung onto the stroller handle as we trudged our way home</span></div>
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<span style="color: #444444;">Then it happened</span></div>
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<span style="color: #444444;">The requisite asshole</span></div>
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<span style="color: #444444;">We never went a single day without one, </span></div>
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<span style="color: #444444;">Thankfully, my boys remember the day differently.</span></div>
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<span style="color: #444444;">As we trudged up the street, Eric on my back, banging his head against the back of mine (he was thoroughly confused! Where was his chair?) me pushing my toddler in a stroller and still managing to have my 15 year old hold my arm, a man stopped dead in front of us.</span></div>
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<span style="color: #444444;">I nearly ran him over with the stroller. </span></div>
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<span style="color: #444444;">Staring at Eric he said</span></div>
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`that kid needs therapy`</span></h2>
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<span style="color: #444444;">I held my 15 year old back with one hand, let go of the stroller to grab Eric who was slipping off my back with the other hand and replied:</span></div>
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THAT kid has autism and if you had a therapy to help him progress you'd win the Nobel prize, so move out of our way!</span></h2>
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<span style="color: #444444;">He scoffed and walked off. </span></div>
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<span style="color: #444444;">My eldest and youngest remember this day fondly, talk about mommy telling off the jerk. </span></div>
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<span style="color: #444444;">I however, remember coming home, locking myself in the bathroom , taking a hot shower to relieve the pain in my muscles and sobbing uncontrollably</span></div>
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<span style="color: #444444;">We've come a long way since that day, as a family and as a society. </span></div>
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<span style="color: #444444;">But tomorrow, for the first time since then, I'm taking Eric and now my granddaughter as well, back to that pool.</span></div>
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<span style="color: #444444;">Its something I feel I have to do, for Eric who has been shut in so much lately, as much as for myself.</span></div>
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<span style="color: #444444;">I know that Eric and my granddaughter will love it. we're in the midst of a heatwave and we can all use the dip. </span></div>
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<span style="color: #444444;">But I'm just not sure how I can cope. </span></div>
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<span style="color: #444444;">Keep me in your thoughts tomorrow</span></div>
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<span style="color: #444444;">Help me to remember that times have changed</span></div>
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<span style="color: #444444; font-family: Georgia, Times New Roman, serif;"><i>Hopefully</i></span></h2>
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<br />Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com0tag:blogger.com,1999:blog-5140377992309987962.post-85511011573549633022014-07-11T19:55:00.001-07:002014-09-23T10:16:47.305-07:00Chlorine Dioxide Treatments, The ''CURE'' For Autism<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-t36yB5pYyb4/U8CDE21oTxI/AAAAAAAAC5c/1dKnLgDWz2A/s1600/bleach-bottle-hi+-+Edited.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="color: #444444;"><img border="0" src="http://1.bp.blogspot.com/-t36yB5pYyb4/U8CDE21oTxI/AAAAAAAAC5c/1dKnLgDWz2A/s1600/bleach-bottle-hi+-+Edited.png" height="640" width="496" /></span></a></div>
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Since Autism was first used as a term in the early 1900s people have been looking for, and touting, various cures. The latest fad miracle is Chlorine Dioxide (MMS- or Mineral Miracle Supplement) Treatment. Several books have been written on the subject, new websites are popping up everyday, and suppliers are emerging so fast it is hard to keep track of them all. Hoards of parents are using the various forms of Chlorine Dioxide treatment in the hopes of curing Autism. </span></h2>
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Should we be using bleach-based oral therapies for our children?</span></h2>
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<span style="color: #444444;">I am APPALLED that there are parents out there willing to feed their children bleach, because that IS what this treatment comes down to, in hopes of curing Autism. Leaving aside the repugnancy of 'cure' rather than strategies to help your child be the most glorious person they can be, that aside, Chlorine Dioxide Treatments come down to, quite simply, poisoning your child.</span></div>
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<span style="color: #444444;">A myriad of books are coming out, all taking advantage of this latest, and quite dangerous fad. A wonderful, sharp as a tack friend and fellow blogger has written a review of one such book on Amazon. Her research is exemplary, so please follow this <a href="http://www.amazon.com/review/R3R77TU3769AID/ref=cm_cr_rdp_perm?ie=UTF8&ASIN=0989289044" target="_blank">LINK</a> to read her review AND her response to an erroneously informed comment. Please LIKE her comments, as this will help anyone considering purchasing the book to think twice. Here is a <a href="http://www.amazon.com/Healing-Symptoms-Known-Autism-Edition/product-reviews/0989289044/ref=cm_rdphist_1?ie=UTF8&filterBy=addOneStar&showViewpoints=0" target="_blank">LINK</a> to some more comments that you should also LIKE in an effort to help keep misinformed parents AWAY from Chlorine Dioxide Treatments, </span></div>
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<span style="color: #444444;">If you are as outraged by this current 'fad' as I am, please also consider joining the <a href="https://www.facebook.com/groups/233866490150483/" target="_blank">facebook</a> group.</span></div>
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<span style="color: #444444;">If you follow TWITTER or GOOGLE+, you can search the HASTAG:</span></div>
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#CantBleachAwayAutism</span></h2>
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Please, help make sure no person is poisoned in an effort to cure Autism.</span></h2>
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<span style="color: #444444;">POST NOTE:</span><br />
<span style="color: #444444;">As I come across other blogs, research articles, websites, et al on this subject I will add them here!</span><br />
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<a href="http://bancdmms.com/"><span style="color: #444444;">bancdmms.com</span></a><br />
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<a href="http://inthemidstofinsanityandfaith.blogspot.ca/2014/07/would-you-like-some-chlorox-with-your.html" target="_blank"><span style="color: #444444;">In The Midst Of Insanity And Faith</span></a><br />
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<a href="http://www.bancdmms.com/#!services/cee5" target="_blank"><span style="color: #444444;">Ban CD/MMS Fiona's blog</span></a><br />
<span style="color: #444444;"><br /></span>
<a href="http://www.bancdmms.com/#!about2/choz" target="_blank"><span style="color: #444444;">The Chemistry of Chlorine Dioxide by T. R. Patterson </span></a><br />
<br />Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com10tag:blogger.com,1999:blog-5140377992309987962.post-61057717214779958862014-04-01T18:46:00.002-07:002014-09-23T08:39:44.477-07:00To Most, Just a Number in the Huronia Regional Facility. To Us He Was, and Always Will Be, Our Phil. A Personal Story For Autism Awareness Month<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-SGchoTlgIbM/UztBZVqAlaI/AAAAAAAACxE/GIn-2pL2Tmg/s1600/phil+001.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="color: #444444;"><img border="0" src="http://1.bp.blogspot.com/-SGchoTlgIbM/UztBZVqAlaI/AAAAAAAACxE/GIn-2pL2Tmg/s1600/phil+001.jpg" height="640" width="462" /></span></a></div>
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<span style="color: #444444; font-size: large;">Mischievous, Loving, Loyal, Athletic, Sweet but a bit Devious. </span><br />
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<span style="font-size: large;">This, and more, describes my brother Phil. </span></span><br />
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<span style="font-size: large;">But for most of his life he was known simply as a 'client', a 'resident', of Huronia Regional Facility for the Mentally Retarded, now thankfully closed down. </span></span><br />
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<span style="font-size: large;">To them, and to many, many people out in the real world, Phil was just a 'thing'. Some<i>THING</i> to pity. In honour of World Autism Month, I want to tell you about Phil, THE PERSON.</span></span><br />
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<span style="font-size: large;">Let me introduce you to my brother.</span></span><br />
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<span style="color: #444444;">Phil was born November 29th, 1952 at the old Grace Hospital at the intersection of Bloor and Yonge in Toronto, Canada to our mom, Evalena Pollard (nee McKinney) and our dad, the late Frank Pollard. Third in what would eventually be a brood of 9 children (what can I say, we Pollard's are prolific!), he was brought home with love and pride. The older two children, Lea 3, and David just 2 welcomed this new playmate into the fold. All was well in the Pollard home.</span></div>
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<span style="color: #444444;">Then a young Phil, just an infant, developed pneumonia. He stopped breathing. Phil was rushed to the hospital but the neurological damage had already occurred.</span></div>
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<span style="color: #444444;">This was during the 1950s.</span></div>
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<span style="color: #444444;">'Retards' were taken from families and hidden away in institutions, because the prevailing thought was this was better for society.</span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="color: #444444;">Phil and I 1972</span></td></tr>
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<span style="color: #444444;">My parents would not give up their baby to strangers so easily. Where others saw a problem, they saw their son. Their Phil. Eventually my parents were given the choice to either institutionalize Phil willingly, and be allowed visitation and minimal rights, or he would be seized from them and they would never see him again. So at age 7, Phil began the long torturous death that would be life in Huronia. I wasn't born until Phil had already been living at Huronia for a decade, and a lot of my memories are tainted by the ghosts of that horrid place. So I've asked my Mother, my brothers and my sisters to help me tell the world about the PERSON that was Phil.</span></div>
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<span style="color: #444444;">My mother told me so many stories of Phil. Some fun, some difficult. As any Autism Mama will identify with. Phil was always a part of things. Never hidden away. My dad would watch hockey with him, and play tickle games (The CLAW!). Phil never spoke a word, his entire life. But both my parents knew he knew who they were, and he loved them as much as they loved him. </span></div>
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<span style="color: #444444;">But raising Phil was not easy in a society that wanted him to disappear. </span></div>
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<span style="color: #444444;">Now, Phil would be labelled as a 'wanderer' and supports would be put in place. Back then, it was seen as all the more reason for locking him away. But my family is a pretty good one. Most people kinda like us. Once they get to know us. So the whole neighbourhood pitched in to help look after Phil and keep him safe. </span></div>
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<span style="color: #444444;">But there were still 2 horrible wanderings. </span></div>
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<span style="color: #444444;">There was the time the family was picnicking at the beach. Phil wandered from the playground while my mom and grandmother unpacked the food at the picnic table just a few feet away. We now know the horrors of children with autism wandering near water. But the relationships my parents had formed were strong. Neighbours saw Phil, and remember, back then people like my brother were hidden. But not Phil. So these neighbours recognized Phil. They couldn't see my parents, so they kept Phil with them at the concert they were watching further down the beach until help could arrive. </span></div>
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<span style="color: #444444;">But then there was the day he managed to get out of the backyard, and was gone for most of the day. A small boy, non-verbal. His bicycle was found in front of a movie theatre. Frantic, my family scoured the area. Terrified Phil had been kidnapped. A new neighbour saw my mom running around, introduced herself and asked what had happened. She immediately joined in the search. That woman was Kay Goodwin, to this day a valued member of our extended family. Phil was finally found at the rail of a racetrack, watching the ponies long after the stands had emptied. </span></div>
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<span style="color: #444444;">More importantly, there are beautiful memories too. And they out-shadow the rough times. </span></div>
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<span style="color: #444444;">Seeing Phil get all excited watching a Toronto Maple Leafs hockey game, even getting mad at the refs, was as much fun as being at a live game. </span></div>
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<span style="color: #444444;">Phil would torment me, the way any older brother torments their baby sister. He'd stare and stare at me til I'd scream 'MOOOOOOOMMMMMMMM!' and then he'd laugh out loud. That would be the only sounds I ever heard from him. His laughter at my pain, Such a typical brother!! </span></div>
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<span style="color: #444444;">Obsessed with long hair, he tried charming, in his own way, any woman whose hair swept past her shoulders. </span></div>
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<span style="color: #444444;">Phil loved cats.</span></div>
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<span style="color: #444444;">He could pet a cat for hours, and the cat would stay by his side. My sister Cheri and Patty were playing with Phil in the yard when they were all 2-3-4 years old. A cat jumped up on the fence. Phil called out 'Kitty'. It would be the only word he ever spoke, and that moment is ingrained in my sisters memories. Even as toddlers themselves, they understood that Phil gave them a gift that day. </span></div>
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<span style="color: #444444;">The gift of hearing his voice. </span></div>
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<span style="color: #444444;">Even though he never spoke another word, Phil communicated. He would grab the newspaper, flip through it as if not seeing a thing, then hours later bring it to you and point at a picture of whatever it was he wanted to tell you. He'd point to an ad for a television if he wanted to watch tv. A picture of a burger if he was hungry. A girl with long hair,accompanied by a mischievous smile, and a laugh if you chastised him. Men will be men! </span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="color: #444444;">Cheri, Phil and Dave</span></td></tr>
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<span style="color: #444444;">Christmas was eternally exciting, and Phil would ask for Santa with his own made up sign language. We found a wonderful Santa in a mall in Orillia and every year, even well into his 40s, Phil would get his picture taken with Santa. He would be so excited that even the toddlers in line were thrilled for Phil. </span></div>
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<span style="color: #444444;">He got such joy out of simple things like that.</span></div>
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<a href="http://3.bp.blogspot.com/-FRGjnLni7Uc/UztfWp04jgI/AAAAAAAACyQ/sbICSTUo5XA/s1600/hockey.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="color: #444444;"><img border="0" src="http://3.bp.blogspot.com/-FRGjnLni7Uc/UztfWp04jgI/AAAAAAAACyQ/sbICSTUo5XA/s1600/hockey.jpg" height="225" width="400" /></span></a></div>
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<span style="color: #444444;">When Phil was allowed to come home, one of the first things he'd do is grab the hockey sticks. My brothers, Dave, Jim, Artie and Wayne would all go out to play street hockey with him, even when they were all well into their 40s. If the weather was bad, they'd play in the basement. One of them invariably would prop me up on something and I would ref. Phil had a wicked slap shot and my brothers would test the mettle of all our sisters' prospective spouses by having them play goal in family hockey games. The 'boys' would fashion goalie pads by duct-taping large sheets of foam to the jeans of whomever was put in goal. The poor guys. They thought, to a one, having never met anyone with a developmental disability, that Phil would have to be babied, that he was being 'allowed' to play. They learned pretty quickly and never doubted Phil's hidden talents. And never played goal again either!</span></div>
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<span style="color: #444444;">Phil's relationships were always strong. He remembered you forever, and wanted to make sure everyone else did. For a decade after our Grandmother died, the moment Phil would enter the family home on the allowed 'visits', he would search for Nana's picture and point and point at it until you said 'Yes, Nana'. He was letting you know he did not forget her. And making sure you remembered too.</span><br />
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<span style="color: #444444;">Phil's passion for hockey was infectious. Anytime we would pass an Esso station he would excitedly point at the sign and mock hitting a hockey puck. Way back when Murray Westgate would say goodnight after every Hockey Night In Canada game. Phil never forgot that.</span><br />
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-FFOIpgXLTjk/UztcIPEtNnI/AAAAAAAACx4/4yw1uxORXIw/s1600/wayne+at+huronia.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="color: #444444;"><img border="0" src="http://3.bp.blogspot.com/-FFOIpgXLTjk/UztcIPEtNnI/AAAAAAAACx4/4yw1uxORXIw/s1600/wayne+at+huronia.jpg" height="270" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: #444444;">My nephew Wayne and his friend on a visit to see Uncle Phil</span></td></tr>
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<span style="color: #444444;">My nieces and nephews and my own children remember many family outings over the years to the annual picnic at Huronia. The facility threw this picnic every year, a huge production. It was really a deflection from the horrors of physical and sexual abuse, the comatose like drugged states most residents were kept in, the thefts and the restraints that happened behind closed doors. </span></div>
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<span style="color: #444444;">We did not know this back then. </span></div>
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<span style="color: #444444;">Instead we saw it as a wonderful family get together, even bringing our young friends along, and opening their eyes to the fact that people with special needs not only existed, but they were real live fun people just like us. So even though Phil was living in horror, he was somehow managing to open others minds. </span></div>
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-bmpCGOGO9sY/UztTD4wDqhI/AAAAAAAACxc/IE8CwNtqumA/s1600/pollards+edit.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="color: #444444;"><img border="0" src="http://1.bp.blogspot.com/-bmpCGOGO9sY/UztTD4wDqhI/AAAAAAAACxc/IE8CwNtqumA/s1600/pollards+edit.jpg" height="145" width="200" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: #444444;">Counterclockwise from top left- David,</span><br />
<span style="color: #444444;">Artie, Jimmy, Wayne, Phil, Me, Lea,</span><br />
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<span style="color: #444444;">David, my eldest brother, had the closest relationship with Phil of anyone in the family. Closer then any 2 siblings I have ever seen in my life. Dave was Phil's protector, guardian, cheer squad, and most of all, best friend. I asked Dave to tell me about his times with Phil, but it was just too hard for him. So instead I will tell you my strongest memory of the connection between Phil and Dave. And it comes from Phil's funeral. Phil had finally escaped Huronia, and had been moved to a residential home within the city. He was finally LIVING. But it was not to be. Not long after escaping Huronia, Phil caught the FLU. He was healthy otherwise, but the FLU took him quickly. He died within days. A shock to us all. Phil's funeral was beautiful. A true celebration of life. There was a floral arrangement lovingly made out of hockey sticks by my sister Cheri, and a Toronto Maple Leafs Flag was spread over his casket. My numerous nephews carried their Uncle Phil's casket into the church, all wearing their Leafs jerseys. The minister who baptized Phil, and buried our father, conducted Phil's service. My Mom and all us Pollard kids sat in the front pew. I sat next to Dave. It was unbearably hot in the church that day. Everyone was fanning themselves, and wearing the lightest clothing possible. Not Dave. He wore a full suit, shirt pressed perfectly, tie knotted lovingly. Dave was pale. Perspiration poured down his brow. I was worried he would faint. I leaned over and whispered ''Dave, take your blazer off, you'll feel better'', he looked at me with the eyes of someone whose own soul had been ripped apart and said '' This is the last time I can do anything for Phil, if that means feeling a little uncomfortable because I'm too hot, than so be it. Its the least I can do after all he went through''.</span></div>
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<span style="color: #444444;">I have never felt greater respect for anyone, before or since.</span></div>
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<span style="color: #444444;">Dave, that wasn't the last thing you did for Phil. Because in that moment I vowed one day people would see our brother as a person.</span><br />
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<span style="color: #444444;">And today, thanks to you, they do.</span><br />
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<span style="color: #444444;">To each and every person who reads these words Phillip Pollard didn't just exist, he lived, was and still is, loved.</span></div>
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<br />Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com0tag:blogger.com,1999:blog-5140377992309987962.post-72012637332376169492014-03-31T10:18:00.000-07:002014-11-18T06:58:29.575-08:00Will The Harmony Prenatal Test mean the Eradication of Down Syndrome, Autism and More. And Is That a Good Thing?<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="font-size: 13px;"><span style="color: #444444; font-size: x-small; text-align: start;">If you knew your unborn baby had Down Syndrome. Or Autism. Or ADHD. What would you do?</span><br />
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<span style="color: #444444;"><span style="font-family: inherit;">First things first. I am Pro-Choice. </span><span style="font-family: inherit;"><br /></span><span style="font-family: inherit;">With that out of the way, here's the problem.</span></span></h2>
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<span style="font-family: inherit;">Until now, the only way to tell if your unborn child had Down Syndrome was through amniocentesis. An invasive procedure, that has many risks involved. Including the very real risk of losing the baby. So most people forego the test. There is a new method of trisomy testing in the U.S., which has become </span>available<span style="font-family: inherit;"> here in Canada. The test is non-invasive, with no risk to the fetus. The Harmony Trisomy Test from Ariosa Diagnostics Inc is a simple blood test. </span></span><br />
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<span style="font-family: inherit;">That's it.</span></span><br />
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<span style="font-family: inherit;">A blood test taken at 10 weeks gestation</span></span><br />
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<span style="font-family: inherit;">With such a simple test available, how long before it becomes standard procedure for all expectant mothers?</span></span><br />
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<span style="color: #444444; font-family: inherit;">And what are the implications of that?</span></h2>
<span style="color: #444444;"><br /></span>
<span style="color: #444444;"><span style="font-family: inherit;"><br /></span>
</span><br />
<span style="color: #444444;">This video is an extra from the movie Gattaca that explains where we are heading. It is already out-dated in terms of science, we have passed the frontiers they mention. But the information goes a long way towards helping to understand the quandary.</span><br />
<span style="color: #444444;"><br /></span>
<span style="color: #444444;"><iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/2LzRITMcat4" width="560"></iframe><br /></span>
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<span style="color: #444444;"><br /></span>
<span style="color: #444444;">The Harmony Trisomy blood tests are performed <i>after</i> expectant parents have chosen to have a child. The tests will help them decide whether they want that <i>PARTICULAR</i> child. They will make that choice not based on accurate information or prognosis, and not based on love. They will make that choice based on fear. What will the abortion rates be for families wanting to expand, but given the information that their child may have Down Syndrome (and the stretch to testing for Autism, ADHD, OCD, etc is not a big stretch, it is within the realm of probability within the next few years).</span><br />
<span style="color: #444444;"><br /></span>
<span style="color: #444444;">Will Down Syndrome (and again Autism etc) be eradicated?</span><br />
<span style="color: #444444;"><br /></span>
<span style="color: #444444;">Should they be?</span><br />
<span style="color: #444444;"><br /></span>
<br />
<h2>
<span style="color: #444444;">
These tests cannot tell you how severe the unborn child's challenges will be. Nor can they tell you their potential. </span></h2>
<h2>
<span style="color: #444444;"><br /></span></h2>
<h2>
<span style="color: #444444;">
So how do we know who and what you are eliminating.</span></h2>
<h2>
<span style="color: #444444;"><br /></span></h2>
<h2>
<span style="color: #444444;">
This video gets the point across.</span></h2>
<span style="color: #444444;"><br /></span>
<span style="color: #444444;"><iframe allowfullscreen="" frameborder="0" height="315" src="//www.youtube.com/embed/fm5KAQnFgHI" width="420"></iframe><br /></span>
<span style="color: #444444;"><br /></span>
<span style="color: #444444;">This video was created in 1997. Since then many of the people mentioned have been shown to have forms of Autism as well ( Einstein, Abraham Lincoln) and there are many not included, Mozart, Bill Gates and more. None of these people would be here if Harmony (and its like) were around for their moms.</span><br />
<span style="color: #444444;"><br /></span>
<br />
<h2>
<span style="color: #444444;">
What kind of world would we be living in?</span></h2>
<span style="color: #444444;"><br /></span>
<br />
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<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-67_JogHMgdY/Uzmdjp39lII/AAAAAAAACws/gPswaWsmii0/s1600/1009675_10151525708951854_1747426306_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="color: #444444;"><img border="0" src="http://1.bp.blogspot.com/-67_JogHMgdY/Uzmdjp39lII/AAAAAAAACws/gPswaWsmii0/s1600/1009675_10151525708951854_1747426306_o.jpg" height="240" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: #444444;">With prenatal ASD testing, 3 people in this photo would not exist. </span></td></tr>
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<span style="color: #444444;"><br /></span>
<span style="color: #444444;">Even if a test could predict not just disorder, but severity, should it? A child born today, with the exact same challenges as my 20 year old son Eric has a much better outlook than he has. Why? Because we know what works in terms of education and therapies. And we have ACCESS to them. So 'severity' does NOT predict potential. Nothing can. Because humans have infinite potential if given adequate resources.</span><br />
<span style="color: #444444;"><br /></span>
<span style="color: #444444;"><br /></span>
<span style="color: #444444;"><br /></span>
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<h2>
<span style="color: #444444;">
Then there is this</span></h2>
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<a href="http://3.bp.blogspot.com/-jjNPfYA_IH4/UzmdzNmkl4I/AAAAAAAACw0/5kbRtoUZHJ4/s1600/545913_218170321699562_1898637617_n.png" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="color: #444444;"><img border="0" src="http://3.bp.blogspot.com/-jjNPfYA_IH4/UzmdzNmkl4I/AAAAAAAACw0/5kbRtoUZHJ4/s1600/545913_218170321699562_1898637617_n.png" height="320" width="296" /></span></a></div>
<span style="color: #444444;">I am who I am because I grew up with a severely developmentally delayed brother. By the time I was 3 years old I was more compassionate, open and understanding than most adults. And that didn't waiver. In fact, those traits became stronger in me as I aged. I also became a fighter. I FIGHT for what is RIGHT. My own sons are now experiencing the same thing, and I see it in every Autism Household I have ever met. The siblings are incredible people. Much more mature, loving, compassionate and driven than their peers. And generally they are exceptional in whatever field they chose. Because they know what it is like to face challenges. Big challenges. And they know that challenges are meant to be overcome. That is not something that can be taught from a text book. Only experience can instill that drive. That drive, combined with compassion and openess are not something that are inate. They come from being raised in enviornments like Autism Households.</span><br />
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<span style="color: #444444;"><br /></span>
<span style="color: #444444;"><br /></span>
<span style="color: #444444;"><br /></span>
<br />
<h2>
<span style="color: #444444;">
So if we COULD detect severity, and eliminate the most severe, what would the human race become?<br />And would it stop there?</span></h2>
<span style="color: #444444;"><br /></span>
<br />
<h2>
<span style="color: #444444;">
What do <i>YOU</i> think?</span></h2>
<span style="color: #444444;"><br /></span>
Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com0tag:blogger.com,1999:blog-5140377992309987962.post-7450699209695138262014-02-24T10:38:00.002-08:002015-01-19T22:22:48.274-08:00Autism and Ageing<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/--U5e-Mz6Qds/UwuFVPjP_AI/AAAAAAAACoQ/DeOCtfjqex0/s1600/aging.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: #444444;"><img border="0" src="http://1.bp.blogspot.com/--U5e-Mz6Qds/UwuFVPjP_AI/AAAAAAAACoQ/DeOCtfjqex0/s1600/aging.jpg" height="640" width="516"></span></a></div>
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<span style="color: #444444;">The first generation of Autistic people to remain in the community rather than being "housed" is ageing. </span></div>
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<span style="color: #444444;"><br></span></div>
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<span style="color: #444444;">Are we prepared?</span></div>
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<span style="color: #444444;">Something parents of people with more challenging forms of autism will not tell you is how much we fear ageing. Both for ourselves and for our children. We won't tell you because it taps into our greatest, and most self-loathing, wish. Our wish to live longer than our children with special needs. </span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">Why? </span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">Not because we want our child's life shortened. Far from it! </span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">It's because the fear of what will happen to our children when we are gone is so real and pervasive that we can't escape it. So we pray we live longer than our children so that SOMEONE will always be there to protect them. </span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">Why should we be so afraid? </span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">Is it because we believe our child should only be with us, never venturing into the world? </span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">Are we hindering our adult children's development and independence? </span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">Is it some egocentric act to make sure we are always "in charge"? </span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">No. </span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">It is because there are no supports in place in society for our children. </span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">And it scares us. Rightfully so.</span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">What happens as the family caregiver ages and is no longer able to provide a home or support or advocacy for the autistic adult?</span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">What happens as the autistic person them-self ages?</span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">There is little to no information on how typical age-related illnesses and disorders present in an autistic person with cognitive delay and/or great sensory, communication or anxiety challenges. There has never been a generation before now of people with such developmental challenges who aged within the general population. In the past our children were taken from us and were horribly and cruelly kept in institutions, as far from sight as possible. They were drugged to the point of catatonia and confined and restrained and abused. Most did not live to a full life expectancy. It was a horrible existence that is thankfully disappearing. Autistic people are finally living life in their communities with their families and friends.</span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">But how do we know if a non-verbal adult is showing signs of dementia?</span></div>
<div style="text-align: justify;">
<span style="color: #444444;">Does a stroke present differently in someone with Autism and Acquired Brain Injury?</span></div>
<div style="text-align: justify;">
<span style="color: #444444;">Will the several decades long use of medications commonly used for treating anxiety and/or sleep disorders in Autistic people have detrimental effects?</span></div>
<div style="text-align: justify;">
<span style="color: #444444;">What are the early signs of a heart attack in someone non-verbal with a high pain tolerance?</span></div>
<div style="text-align: justify;">
<span style="color: #444444;">How do you discover diabetes, and administer insulin , in someone violently terrified of doctors, hospitals and needles?</span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">The list goes on. </span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">And there are no answers.</span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">Why? </span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">Because these questions are NOT being asked. </span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">These concerns are not being debated and addressed. </span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">Public awareness of Autism was the old fight. Now the battle is to see that the general population realises Autistic children grow to be Autistic adults. And soon they will be Autistic Seniors. The battle is to heighten awareness within the medical community of this very real, and very neglected, concern. No parent should ever have to wish they outlive their child simply because society will not acknowledge that their child's needs grow and change as they age into adulthood and into their later years. </span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">How will you, as a parent, as an advocate, as an educator, as an Autistic person, as a medical practitioner, as a scientist, as a theologian, as a SOCIETY, how will you ensure that services, supports and KNOWLEDGE are available to ensure autistic people can age WITHIN society. </span></div>
<div style="text-align: justify;">
<span style="color: #444444;"><br></span></div>
<div style="text-align: justify;">
<span style="color: #444444;">Lets start the dialogue</span></div>
<div style="text-align: justify;">
<br></div>
Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com0tag:blogger.com,1999:blog-5140377992309987962.post-970176566274937632014-02-20T11:00:00.000-08:002015-02-14T08:13:20.698-08:00The Look Of Love, Autism Style!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-1TxIEzbqWPA/Uv5GZYDwUtI/AAAAAAAACJ8/tX4zLJ_Kigg/s1600/285022_10150257833526854_5835885_n2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="color: #444444;"><img border="0" src="http://4.bp.blogspot.com/-1TxIEzbqWPA/Uv5GZYDwUtI/AAAAAAAACJ8/tX4zLJ_Kigg/s1600/285022_10150257833526854_5835885_n2.jpg" height="480" width="640"></span></a></td></tr>
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<h4 style="text-align: center;">
<span style="color: #444444;">
There is a common perception that people with autism, any form, cannot, and do not, love. </span></h4>
<h4 style="text-align: center;">
<span style="color: #444444;">
We're here to blow that myth out of the water!!!!</span></h4>
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<h2 style="text-align: center;">
<span style="color: #444444; font-size: small;">Autism households around the world want to share with you </span></h2>
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<span style="color: #444444; font-size: small;">their beautiful pictures and stories of love!</span></h2>
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<h2 style="text-align: center;">
<span style="color: #444444; font-size: x-large;">As they say.... </span></h2>
<h2 style="text-align: center;">
<span style="color: #444444; font-size: x-large;">a picture is worth a thousand words!</span></h2>
<font color="#444444">http://youtu.be/U5SGUunb18A</font><br>
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<br>Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com0tag:blogger.com,1999:blog-5140377992309987962.post-22395713328976561422014-02-11T13:13:00.001-08:002016-04-08T09:33:51.648-07:00A Parents' Toolbox For Helping Their Autistic Child in Mental Health Crisis<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-PFIuCweNU7s/UvkUmn76h0I/AAAAAAAACDk/dbH9_dCSd9k/s1600/tool+box.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: #444444;"><img border="0" height="480" src="https://2.bp.blogspot.com/-PFIuCweNU7s/UvkUmn76h0I/AAAAAAAACDk/dbH9_dCSd9k/s1600/tool+box.jpg" width="640" /></span></a></div>
<h2 style="text-align: center;">
<u><span style="color: #444444; font-size: large;">A Parents' Toolbox For Autistic Crisis</span></u></h2>
<div style="text-align: left;">
<span style="color: #444444;">Usually when you hear the term Dual Diagnosis, it refers to a mental health disorder accompanied by an addiction. But it also refers to mental health disorders occurring in those with developmental challenges. With Autism in particular, anxiety disorders , if not present at the original diagnosis are almost universally present in adolescence. </span><br />
<span style="color: #444444;"><br /></span>
<br />
<a name='more'></a><span style="color: #444444;"><br /></span>
<span style="color: #444444;"><br /></span>
<span style="color: #444444;">If you are the parent of a child with Autism, you are familiar with ''Meltdowns'', the complete and utter loss of behavioural control, often with no obvious cause. When our children are small, meltdowns are horrific. And the comments of others in regards to our child during a meltdown pierce our soul. But soon, whether through formal methods like ABC tracking (antecedent, behaviour, consequence) or the informal, but invaluable experience of simply living through many many meltdowns, we learn how to anticipate situations that could set off a meltdown and prepare. Prepare ourselves and our children. </span></div>
<div style="text-align: left;">
<span style="color: #444444;"><br /></span></div>
<div style="text-align: left;">
<span style="color: #444444;">However</span></div>
<div style="text-align: left;">
<span style="color: #444444;"><br /></span></div>
<div style="text-align: left;">
<span style="color: #444444;">As our children with Autism enter puberty, and anxiety disorders take hold, something terrible happens, all too often. </span></div>
<div style="text-align: left;">
<span style="color: #444444;"><br /></span></div>
<div style="text-align: left;">
<span style="color: #444444;">Crisis</span></div>
<div style="text-align: left;">
<span style="color: #444444;"> </span></div>
<div style="text-align: left;">
<span style="color: #444444;">Crisis is not an individual event. It is a state of being. A terrible awful state of being. The meltdowns we hated, but learned to cope with and reduce, are replaced with something much worse. Violence and aggression towards people or objects become common place. Our children are just as mystified and scared by this change as we are, which then makes their anxiety, and resulting behavioural problems increase. Which then mystifies and scares them to a greater extent. It is a terrible cycle, the descent into Crisis.</span></div>
<div style="text-align: left;">
<span style="color: #444444;"><br /></span></div>
<div style="text-align: left;">
<span style="color: #444444;">Every parent of an adolescent or adult with autism who has experienced Crisis goes through their own crisis as well. Terrible decisions are forced upon you. Decisions you never expected, nor wanted to make. You question yourself over and over as you travel this path. You feel scared, angry, guilty. As your child's outburst become more and more dangerous, you become afraid. And then you feel guilty. Guilty for being afraid of your child. You become angry. Angry with all those who are unable to help. And angry with yourself for not knowing HOW to make this easier on your child. Your emotions are all over the map. </span></div>
<div style="text-align: left;">
<span style="color: #444444;"><br /></span></div>
<div style="text-align: left;">
<span style="color: #444444;">Which makes it <i>VERY</i> difficult to make <i>GOOD</i> decisions, and react appropriately.</span></div>
<div style="text-align: left;">
<span style="color: #444444;"><br /></span></div>
<div style="text-align: left;">
<span style="color: #444444;">Unless you are prepared.</span></div>
<div style="text-align: left;">
<span style="color: #444444;"><br /></span></div>
<div style="text-align: left;">
<span style="color: #444444;">In terms of the Autism Parent's Toolbox, it is better to have what you do not need, than to need what you do not have.</span></div>
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<span style="color: #444444;"><br /></span></div>
<div style="text-align: left;">
<span style="color: #444444;">So if you're child is in crisis right now, try to find a quiet time ( yes, I hear you laughing! I said TRY ), go through this article and then prepare what YOU need. </span></div>
<div style="text-align: left;">
<span style="color: #444444;"><br /></span></div>
<div style="text-align: left;">
<span style="color: #444444;">If you are NOT in crisis, read through this and prepare anyway! A stitch in time......</span></div>
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<h4 style="text-align: center;">
<span style="color: #444444; font-size: large;"><b><u>Behaviour Binder</u></b></span></h4>
<div style="text-align: justify;">
<a href="http://2.bp.blogspot.com/-C_qsQ7hs8cE/UvuWmIOvUiI/AAAAAAAACGk/NqP4SSyF60M/s1600/autismriskmanagement.com+documents+autism_emergency_contact_form.pdf.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="color: #444444;"><img border="0" height="320" src="https://2.bp.blogspot.com/-C_qsQ7hs8cE/UvuWmIOvUiI/AAAAAAAACGk/NqP4SSyF60M/s1600/autismriskmanagement.com+documents+autism_emergency_contact_form.pdf.png" width="267" /></span></a><br />
<span style="color: #444444;">Every Autism Household should have one. Crisis or not. It is invaluable for new therapists or respite workers entering your home or for emergencies we just can't predict. </span></div>
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<span style="color: #444444;">The cover of my son's binder has this sheet (filled out of course!) taped to the front cover. Click <a href="http://autismriskmanagement.com/documents/autism_emergency_contact_form.pdf" target="_blank">here</a> for the PDF version. A copy of this sheet is also placed in the Emergency Folder described below</span></div>
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<span style="color: #444444;">Tucked into the inside pocket of the front cover I have markers, as well as laminated 'First Then' and 'Eric's Schedule' sheets. Food preferences are a major problem for Eric, he spent 4 days without eating during a recent hospital stay simply because they were not serving him food he would eat. So as a first page I have a sheet with his current food preferences. </span></div>
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<span style="color: #444444;">The next page is a Support Plan. We may know what our children like, what their triggers are, and how to soothe them, but others don't. In Crisis you don't want to take the chance you might forget something ( believe me, you will). This was created by the behaviour therapist on Eric's crisis team, but it is something that any parent can do on their own. Just remember to keep it to one page </span></div>
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<span style="color: #444444;">The third section of the Behaviour Binder is a comprehensive ''Crisis Prevention and Management Tool'' created by a crisis team, but you could make up something similar yourself. The purpose is to help both yourself and others understand what the LEVELS of Crisis look like for YOUR child, and what can and cannot be done during those times. It makes a huge difference to have it in black and white. Click<a href="http://knowledgex.camh.net/hcardd/resources/Documents/crisis_prevention_and_management_tool_Form_39412.pdf" target="_blank"> here</a> for a link to the PDF file for the template. Remember, it is meant to be used in conjunction with a Crisis team, but it will give you an idea of what information you need, and how to present it on paper. As a guideline, here is an abridged version of Eric's overview. Please note, I also keep a copy of this plan in Eric's Emergency Folder, which I'll talk about later in the article.</span></div>
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<span style="color: #444444;">Other helpful things to place in this binder are : </span></div>
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<li><span style="color: #444444;">Typical Daily Schedule (be sure to include a separate schedule for weekends or holidays) </span></li>
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<li><span style="color: #444444;">A Separate sheet describing times, doses and methods of administering medications</span></li>
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<li style="text-align: center;"><span style="color: #444444;">ABC tracking sheets (antecedent, behaviour, consequence- for a template click <a href="http://www.positivelyautism.com/downloads/datasheet_abc.pdf" target="_blank">here</a> ) below is a video that makes ABC tracking easily understandable</span></li>
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<span style="color: #444444;">Like it or not, while our children are in the throws of Crisis, emergencies of some sort are guaranteed. No matter their developmental level or severity, they have a high likelihood of wandering (elopement) or ''running away from home''. There unfortunately is also the moment we all dread, the decision that we never, even in our worst nightmares, thought we'd ever have to make. The moment when their safety, or the safety of those around our child, is at serious risk because of their behaviour. The horrible decision to call the authorities on your child. It is the most guilt ridden, heart wrenching soul devouring decision you will make. And in that moment, you will NOT be thinking clearly, so the Emergency Folder is a MUST. I pray that no parent NEEDS to call the police on their child, but it is all too necessary, all too often, to dismiss. </span></div>
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<span style="color: #444444;">My son has a developmental age of somewhere around 3 years old. When he was in crisis, his descent was rapid and the violence escalated exponentially. There came a time where I had to make that call. Had I not made the call, my son would not have been hospitalized and received the medications and treatment and services he needed to escape crisis. Had I not made the call at that particular moment, he would have critically injured himself or I within minutes. But as I stood sobbing on my front steps, a police officer hugging me, telling me I was doing the right thing, all while 3 other police officers subdued my son, whose mind is that of a toddler, who did not understand WHY this was happening to him, as my son screamed ''Mommy, Help'', in that moment, I wanted to die. If you have been through this. You know. If you haven't, I am hoping that you never have to, but if you do, remember, you are not alone.</span></div>
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<span style="color: #444444;">It is in moments like this, or when your child wanders, that you will need your Emergency Folder. In it, you will put everything you need for an emergency, so that when it happens, you will not forget something important.</span></div>
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<span style="color: #444444;">Make sure the folder CLOSES in some way. I guarantee, during an emergency situation, that you will pick it up upside down and drop everything if you do not have a folder that closes. Mine is from a dollar store, nothing fancy, but has a velcro closure because if I were to try to open anything more complicated during times of crisis I would be unsuccessful and likely tear the thing apart!!</span></div>
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<span style="color: #444444;">In your folder place the following:</span></div>
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<li><span style="color: #444444;"><a href="http://autismriskmanagement.com/documents/autism_emergency_contact_form.pdf" target="_blank">Emergency Contact Sheet</a> (referred to above in the Behaviour Binder section) On this copy, beside your address, write in your nearest intersection<span style="font-size: x-small;"><i> <span style="font-size: small;">(Why your nearest intersection? Because if you must make that dreaded call to 911, you will likely be so upset that you cannot remember your own name, let alone where you live.)</span></i></span></span></li>
<li><span style="color: #444444;">Health Card, Insurance, Drug Card, whatever you need in your area for your child to be seen in emergency</span></li>
<li><span style="color: #444444;">Birth Certificate</span></li>
<li><span style="color: #444444;">Any Hospital cards or School IDs you may have. Even expired ones. They have information that can be very useful when you are not able to think clearly.</span></li>
<li><span style="color: #444444;">A copy of the Crisis Prevention and Management Tool that you can give to whomever you encounter during the emergency and intake. It is INVALUABLE to them in understanding HOW to care for your child PROPERLY and will lesson the chance that they will inadvertently cause your child's Crisis to get worse.</span></li>
<li><span style="color: #444444;">A store bought pre-loaded credit card for $25. You don't want to get stuck at the hospital, or trying to get home, and realize that in the melee of your child's emergency you forgot your purse or wallet at home. </span></li>
<li><span style="color: #444444;">Items that will calm your child. In Eric's case I have a package of markers, a connect the dots book and Mickey Mouse colouring pages.</span></li>
<li><span style="color: #444444;">Gum. That is for you. You will be very upset. Nervous. Scared. The act of chewing will help relieve some of the physical tension your body will experience because of the emotional tension you are feeling </span></li>
<li><span style="color: #444444;">Anything else YOU feel is important for YOU or YOUR child during an emergency. You know your child best. </span></li>
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<span style="color: #444444;">Try to keep this folder as portable as possible. Don't include a Teddy Bear for example as an item to calm your child. This kit needs to be something you can grab and run with. </span><br />
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<span style="color: #444444; font-size: large;"><u><b>PREVENTION</b></u></span></h4>
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<span style="color: #444444;"><span style="font-size: small;">You cannot teach, or introduce, crisis management tools to help your child </span>DURING Crisis. They need to be taught BEFORE there is an indication of Crisis. OR, after Crisis has been managed to the point that life returns to normal. </span></div>
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<span style="color: #444444;">Below are some wonderful links and videos showcasing anxiety management, communication tools, relaxation techniques and more. Bookmark them on your computer and visit them often!</span></div>
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<a href="http://visuals.autism.net/visuals/main.php?g2_itemId=419" target="_blank"><span style="color: #444444;">Geneva Centre for Autism E-Learning Site, Visuals</span></a></div>
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<span style="color: #444444;">On this page there are 23 short video tutorials on the introduction and use of visuals to help with everything from a change in routine, to a volume meter , to muscle relaxation and more. Exceptional resource!</span></div>
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<a href="http://thegraycenter.org/social-stories/what-are-social-stories" target="_blank"><span style="color: #444444;"> Social Stories</span></a></div>
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<span style="color: #444444;">A very effective way to PREVENT anxiety in a person with autism is to prepare them for change in routine. Social Stories are a tried and true method to do so. This link is for The Gray Centre (Carole Gray is the creator of Social Stories) . You can easily create your own once you know the basics. Try this <a href="http://visuals.autism.net/visuals/main.php?g2_itemId=524" target="_blank">link</a> for picture symbols to use, or download the 'story builder' from Leeds Metropolitan University (UK) <a href="http://www.leedsmet.ac.uk/inn/usabilityservices/download2.htm" target="_blank">here </a></span></div>
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<a href="http://connectability.ca/"><span style="color: #444444;">Connectability.ca</span></a><br />
<span style="color: #444444;">A fabulous site for people with developmental disorders and challenges, for their families, and their supports. Check it out. In particular, check out <a href="http://connectability.ca/?s=visuals&search-go=go" target="_blank">this page</a>, the articles and links are incredibly useful!</span><br />
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<u><b><span style="color: #444444;">Get to Know Your Neighbours</span></b></u></div>
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<span style="color: #444444;">In the event of an emergency you want to be able to know that if you forgot to lock the door or turn off the stove, or your other children will be arriving home from school, that you have the phone numbers of your neighbours who you KNOW will help. You want them to KNOW you have a child with autism so that if the unthinkable happens, like wandering or crisis, you will have support, rather than glares, from your neighbours. Create a list of your trusted neighbours, their phone numbers and addresses. Place a little sun symbol beside their name if they are usually home during the day (do not indicate that they are NOT home during the day, for obvious home safety reasons). Stick this sheet in a high profile location. Preferably near a phone, but on the fridge works as well. If you have a cel phone, make a contact entry titled 'EMERGENCY- Neighbours' and list all their phone numbers. This way, during an emergency, you will simply go down the list until someone answers, rather than trying to remember your neighbour's names. If you do not have a cel phone, make a copy of the list and keep it in your Emergency folder </span></div>
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<span style="color: #444444;"><a href="http://www.camh.ca/en/hospital/Documents/www.camh.net/About_Addiction_Mental_Health/Mental_Health_Information/concernparents_dualdiaghdbk.pdf" target="_blank">Support Service and Resource Handbook</a> </span></div>
<i><span style="font-size: x-small;"><span style="color: #444444; font-family: inherit;">A RESOURCE HANDBOOK FOR SUPPORTS AND SERVICES FOR PERSONS WITH A DUAL DIAGNOSIS IN TORONTO</span></span></i><br />
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<span style="color: #444444;">Although this is Toronto Ontario Canada specific, the information and guidance is translatable to wherever you live. </span></div>
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<a href="http://tech.groups.yahoo.com/group/AutismOntario/" target="_blank"><span style="color: #444444;">Autism Ontario On-Line chat group</span></a></div>
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<span style="color: #444444;">Although it is Autism <i>ONTARIO</i> anyone can join. If you are wondering how to help your child with something specific, there is no better way than to ask other parents. </span></div>
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<a href="http://www.crisisprevention.com/Home" target="_blank"><span style="color: #444444;">Crisis Prevention Intervention Training</span></a></div>
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<span style="color: #444444;">We do not want to have to even consider a time when we will need to know how to de-escalate our child's violent episodes, or worse, have to find a way to restrain them until they are calm. But it happens. It is better to have this knowledge and skill beforehand. Hopefully, you will never need it. Training in CPI is available around the globe. Generally if you contact whatever social service organization you are affiliated with in your area, they can guide you to courses for parents. This link takes you to the main training centre for CPI, and is more appropriate for those working in situations where they are likely to encounter many individuals with anxiety and violent tendencies in their careers, but it will give you a very good understanding of WHAT CPI is.</span></div>
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<a href="http://www.autismspeaks.org/autism-apps" target="_blank"><span style="color: #444444;">Autism App Directory</span></a></div>
<span style="color: #444444;">Whatever your personal opinion of Autism Speaks (yes I have an opinion of their mandate), they provide excellent resources. And this is one. It is a list of Apps that are Autism specific or Autism useful. Each App is given a rating, is qualified as <i>Anecdotal</i> (No specific or related scientific studies for this type of app)<b>, </b><i>Research</i> (There are some related scientific studies, but no direct research support for this type of app or technology), or <i>Evidence</i> (There is solid or specific scientific evidence that this type of app or technology is helpful). Each app is given a category (IE Social Skills) and an age range, as well as listing the Platform for the App. Very useful</span><br />
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<a href="http://www.youtube.com/results?search_query=supernanny" target="_blank"><span style="color: #444444;">SuperNanny</span></a><br />
<span style="color: #444444;">Yes, THAT Super Nanny. The link takes you to a YouTube page with various episodes. Watch them. She's one smart cookie</span><br />
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<span style="color: #444444;">In the throws of Crisis, you will encounter many wonderful people. People whom you will always hold dear to your heart, literally life savers. But you will also encounter those that choose not to understand. Those who will attack. Sadly, sometimes even other parents from Autism Households. They may challenge your decision to implement medications, they may attack your choices. It is in times like that you NEED to remember the first group, the supporters. It will be all too easy to focus on the bullies, but don't. Because if you do you will not have enough strength leftover for you or your child. In times of Crisis, you may want to use the Meme below as a screen saver to keep your focus OFF the negative that will be all around you. </span><br />
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If you know of any tips or resources that may be helpful to families experiencing crisis, please connect with me on <a href="https://www.facebook.com/daysofwhineandrose" target="_blank">FaceBook</a> or comment below!!! </span></h2>
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We are all in this Together!</span></h2>
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Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com0tag:blogger.com,1999:blog-5140377992309987962.post-50970984144715296832014-02-05T20:17:00.000-08:002015-02-09T07:33:38.167-08:00A Warrior Mom's Dilemma: When To Advocate, and When NOT To!!<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-E5Vd-LaN_p8/UvLYMRYmu0I/AAAAAAAACBM/clazkF43Jvw/s1600/_MG_0171.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="color: #444444;"><img border="0" src="http://2.bp.blogspot.com/-E5Vd-LaN_p8/UvLYMRYmu0I/AAAAAAAACBM/clazkF43Jvw/s1600/_MG_0171.jpg" height="426" width="640" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: #444444;">Photo Courtesy of Chris McKim</span></td></tr>
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<span style="color: #444444;">I recently went to The Art Gallery of Ontario to decompress and enjoy a fabulous exhibit. Instead I was given a glimpse into my own too-quick to protect behaviour, and how that's not always the best reaction</span><br />
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<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-W7SqaSw8elc/UvOxWePK2MI/AAAAAAAACCw/75dEa9gRILM/s1600/advocacy.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="color: #444444;"><img border="0" src="http://2.bp.blogspot.com/-W7SqaSw8elc/UvOxWePK2MI/AAAAAAAACCw/75dEa9gRILM/s1600/advocacy.jpg" height="358" width="640" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: #444444;">photo courtesy of Luke Hayne</span></td></tr>
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<span style="color: #444444;">Decades before I was born, my maternal grandmother Gladys McKinney was sowing the seeds of advocacy that would permeate every ounce of my soul. </span></div>
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<span style="color: #444444;">In the early part of the 20th century, my grandmother was bringing 'indigents', the homeless, into her own impoverished home to feed them. </span></div>
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<i><span style="color: #444444;">The Pot that feeds four, feeds five just as well</span></i></blockquote>
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<span style="color: #444444;">Nana</span></blockquote>
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<span style="color: #444444;">My Nana volunteered in every possible socially responsible committee that came her way. She couldn't help it. It was in her very DNA. Having relatives like <a href="http://thecanadianencyclopedia.com/en/article/louise-mckinney/" target="_blank">Louise McKinney</a> and <a href="http://www.thecanadianencyclopedia.com/en/article/nellie-letitia-mcclung/" target="_blank">Nellie McClung</a>, two of ''<a href="http://www.famous5.ca/index.php/the-famous-5-women/the-famous-5-women/" target="_blank">The Famous Five'</a>', the women who fought for and won the right for women to vote in Canada, well, guess Nana was just doing what came naturally! </span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="color: #444444;">For Facebook link to this picture and story, click <a href="https://www.facebook.com/photo.php?fbid=218170321699562&set=a.204915069691754.1073741828.174062482777013&type=1&theater" target="_blank">here</a></span></td></tr>
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<span style="color: #444444;">Decades before my brother Phil, Nana's grandsson, was to stop breathing and suffer an acquired brain injury, my grandmother joined a group of a dozen people who helped ''shut ins'' lead a fulfilling life. In the days when people with challenges of any kind were hidden away or 'housed' this group would make Christmas stockings, fund raise and buy tickets to take groups of physically or developmentally challenged people on outtings and organize get-togethers and picnics. They understood that a physical, mental or developmental disability did not mean you were LESS of a person, and that you still craved and DESERVED a life outside your four walls. All this in the first half of the 20th century. </span></div>
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<span style="color: #444444;">But she didn't stop there.</span><br />
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<span style="color: #444444;">In the middle of the last century, Canada struggled to find its social responsibility. Wonderful advances were made, Universal Health Care, The Canada Pension Plan (CPP) and more. But there was still this dogma that stated you had to earn your keep to be entitled to help. And so as the large majority of the VOTING population benefited from our social growth, the most vulnerable of society were falling further behind. </span></div>
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<span style="color: #444444;">Nana would have NONE of that. </span></div>
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<span style="color: #444444;">She, and the dozen others in her group, marched off to Ottawa and lobbied the government on proposed changes to the CPP. And made a difference. The disability tax credit was introduced and a disability pension created. A special pin was forged and presented to the group as a token of Canada's gratitude to their foresight and conviction. </span></div>
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<tr><td class="tr-caption" style="font-size: 12.8000001907349px; text-align: center;"><span style="color: #444444;">for the facebook link to this picture and story, click <a href="https://www.facebook.com/photo.php?fbid=219307124919215&set=a.204915069691754.1073741828.174062482777013&type=1&theater" target="_blank">here</a></span><br />
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<span style="color: #444444;">When my own son was diagnosed with autism, just over 11 years after Nana had left this world, I discovered my own need for advocacy.</span><br />
<span style="color: #444444;">Oh, it had always been there.</span><br />
<span style="color: #444444;">To a lesser degree.</span><br />
<span style="color: #444444;">I had ALWAYS rooted for the underdog and I hated the R-Word as long as I could remember. I was never able to stand up for myself, but my entire rather large vocabulary and every ounce of hutzpah would surface anytime I saw someone else suffer an indignity.</span><br />
<span style="color: #444444;">In the early 1990s. when Eric was diagnosed, your average GP had no knowledge of Autism. I still ran into doctors, even at the world renowned Hospital For Sick Children in Toronto, who told me Autism was a result of a mother not bonding with her child. </span><br />
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<span style="color: #444444;">Suddenly, that underdog was my own innocent baby.</span><br />
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<span style="color: #444444;">I wore my Nana's pin, carried an 8X10 gorgeous picture of my son, again delved into my massive vocabulary and, with a small group of mothers, rallied every possible level of government for services and funding for people with autism. We were able to establish what would become the PreSchool Autism Services (fully funded ABA therapy), and we were able to spread awareness to the point no doctor would DARE say to a mother now that autism was a result of her not loving her child.</span><br />
<span style="color: #444444;">We went from the days when people would kick my small son and I out of restaurants because 'The Retard is making too much noise' (YES, that happened, more than once) from the days where strangers would daily verbally attack a mom and her baby out of ignorance, to now, where there is SO much awareness that the word 'Autism' is commonly mis-used as a politically correct term for all developmental disabilities.</span><br />
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<span style="color: #444444;">Yes, we've come a long way.</span><br />
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<span style="color: #444444;">But the fight is not over.</span><br />
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<span style="color: #444444;">We, the parents of autistic people, still have to fight for an APPROPRIATE level of services. We have to </span><br />
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<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-XIh9VNp6H4A/UvL7CXJTW4I/AAAAAAAACCE/QhVvKWHWxRA/s1600/Necropolis+049.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="color: #444444;"><img border="0" src="http://3.bp.blogspot.com/-XIh9VNp6H4A/UvL7CXJTW4I/AAAAAAAACCE/QhVvKWHWxRA/s1600/Necropolis+049.jpg" height="147" width="320" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="color: #444444;">Necropolis at Huronia Regional Facility (Orillia Asylum)</span></td></tr>
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<span style="color: #444444;">fight a new battle for adult services. And, with the abolition of Institutions like Huronia Regional Facility (where my brother Phillip spent most of his short life), we are also now struggling to figure out how best to help those with developmental disabilities as they age, and succumb to the same age related illnesses and disorders as the rest of the population. In the institutions people like my brother were kept restrained or drugged. So dementia, or ALS or any number of other disorders and diseases would go undocumented and untreated. Thankfully the institutions are now closed, or closing. Are there supports for those aging in the community with developmental challenges? Little to none. So we battle on</span><br />
<span style="color: #444444;">There is also the burgeoning new front of self-advocacy within the Autistic Spectrum. As a parent, and sister, I can't tell you how incredible it is for me to see Autistic people being given the right denied to them up til now.</span><br />
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<span style="color: #444444;">The right to speak for themselves. </span><br />
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<span style="color: #444444;">And this is where I myself am failing. The thrill and joy that society has progressed to the point where autistic self-advocacy is not a wish, but a reality battles with my instinct to protect. An instinct that was honed through many years of fighting society and the system, years of protecting my autistic child and my whole Autism Household from society's attacks.</span><br />
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<span style="color: #444444;">I can't just turn that off. Nor should I. What I need to do is dial it back. A lesson I learned at the Art Gallery of Ontario</span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="color: #444444;">Art Gallery of Ontario Atrium</span></td></tr>
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<span style="color: #444444;">Yesterday I went with my nephew for a culture fix. We bundled up in the cold that is February in Toronto and headed to the AGO, intent on seeing the ''<a href="http://www.ago.net/the-great-upheaval-modern-masterpieces-from-the-guggenheim-collection/" target="_blank">The Great Upheaval''</a>. What I got wasn't a dose of culture, but a personal lesson. One that I didn't know I needed.</span><br />
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<span style="color: #444444;">The lesson that every advocate needs to learn</span><br />
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<span style="color: #444444;">When NOT to advocate</span><br />
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<span style="color: #444444;">As my nephew and I wandered the gallery,I heard a sound. A sound that only Autistic people make. If you live or work or care about an autistic person than you know the sound.</span><br />
<span style="color: #444444;">As my nephew admired an Andy Warhol my senses were on alert. The group entered the gallery. It was just my nephew, myself and this small group of autistic young adults with their support people. Rocking, hopping, flapping happily. Humming, cooing, clicking. I fought the instinct to walk up and just hug someone. I tried to concentrate on the art around me, but I couldn't, my attention and every single one of my senses was centred on the group. </span><br />
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<span style="color: #444444;">Then a security guard walked in, oblivious to my nephew and I, focusing solely on the group.</span><br />
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<span style="color: #444444;">And my advocate instincts went into overdrive</span><br />
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<span style="color: #444444;">Mama Bear exploded.</span><br />
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<span style="color: #444444;">I was sure he was there because <i>HE</i> was sure the group would be a problem, damage something, bother someone.</span><br />
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<span style="color: #444444;">But before I could act upon my own prejudice, the prejudice that made me believe I needed to protect this group from this security guard, something wonderful happened.</span><br />
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<span style="color: #444444;">The group became silent. No humming. No chirping or squealing. complete silence.</span></div>
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<span style="color: #444444;">I turned my attention from the security guard towards the group of young adults.</span></div>
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<span style="color: #444444;">They were standing in reverence before a Pablo Picasso. </span></div>
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<span style="color: #444444;">The security guard backed out of the room, I'm sure he too was feeling what I was. </span></div>
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<span style="color: #444444;">That we were intruding on something magical, something almost spiritual.</span></div>
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<span style="color: #444444;">This group didn't need my protection. I don't even know that the security guard had malicious intent. He too may be from an Autism Household and he too may have had his advocate instincts on overdrive. I doubt I will ever know.</span><br />
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<span style="color: #444444;">What I do know is that this group of young adults, people who outwardly seemed to need my protection, had made me see my own challenges.</span><br />
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<span style="color: #444444;">And forced me, through their quiet reverence, to see that sometimes there is no fight to fight.</span><br />
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No Fight. </span></h4>
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Just beauty</span></h4>
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<span style="color: #444444;">To view the facebook post that inspired this article click here</span> Jazzbrathttp://www.blogger.com/profile/17791902512155386681noreply@blogger.com1