Sunday, 18 January 2015

Pan Can Autism

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? 
How about going for a walk. 
A long walk.
Like a more than 450km walk.

That's what Dee Gordon of Etobicoke Ontario is doing, right this very moment.


Saturday, 10 January 2015

The Amazing Angela!! A Post For Those Who Ever Wondered What Its Like to Work With "Our Kids"

Years ago, when my son was attending day respite at The Geneva Centre For Autism  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!

How Au-some is she??

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.  

(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!
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!
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.
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.
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!
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!
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?

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!
1. Walking down the hallway with a kid while he's holding a cup of juice. Me: "What flavour is your juice?"Kid: "Rainbows! It's full of rainbows!"
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.
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).
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.
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"!!
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!
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.
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.
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)
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.
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"?
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.
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.
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.
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".
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.
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".
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?
(April 2013)
I must add 2 more!!
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!
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!” 

Never a dull moment!

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

ps, #5 is my Eric, many many years ago, but he still says that lol!! And I was present for #6, That Dramaway production was THE best theatrical experience I have ever had and some of the greatest laughs!!! 

Wednesday, 7 January 2015

The Evolution of Autism Awareness Over a Century, as Shown Through Four Generations of One Family

Photo courtesy of Luke Hayne, Autistic Graphic Designer

Proud to present another guest written Days of Whine and Rose article. 

Written by my son, Christopher Medeiros. XO

Autism Spectrum Disorder (ASD) is the umbrella term for a group of neurodevelopmental disorders 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 ***

In 1971 a report 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: 

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 

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. 

The following is a look at one family’s experiences with society’s perceptions of autism over this period.

photo courtesy of Wayne Pollard
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. 

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. 

Within society, but not allowed to be a part of it.

Phillip and Lori Pollard
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". 

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. 

Phillip was seven years old. 

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. 

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.

Chris and Eric Medeiros, circa 1994
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. 

But I could not stray from routine. 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. 

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. 

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’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. 

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.

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".

We’ve come a long way from hiding your child to make sure they weren’t forced into an institution.

Can’t wait to see how far we will go from here.