Monday, 28 October 2013

The Unexpected Journey- Cory's Story

The Unexpected Journey- Cory's Story


When you have children with special needs you tend to seek out those going through the same challenges your own family is experiencing. Even if you're lucky enough to have a supportive extended family, you still crave the company of those who KNOW the life. Those you can vent to, and provide support to in return. Facebook has its faults, but one of the things it does well, very well, is allow communities to come together. I 'met' Cory through one of those communities. 
This is her story, in her own words

One year ago my husband Josh , our daughter Aly and I bundled up in our cold weather gear and made our way to downtown Fayetteville . I remember having knots in my stomach as I opened the door to the UNC -TEACHH Autism office. As we waited for our turn , I began to think back to the events that brought us there that day ...........

Our daughter was born quickly , with her eyes wide open , looking around ...curious about this big new world. She was a very happy baby who rarely cried. The first five months or so she flew through her developmental milestones with flying colours .
At six months old Aly said her first word . That's right , I said SIX months old . ''Down''. (Mimicking my friend as she shooed her dog away from the table) . All our jaws hit the ground ... we couldn't believe our ears . 
 After that , things changed pretty fast . Aly began falling behind on her milestones . This was around the time that I was diagnosed with postpartum depression . I still struggle to remember more than pieces and parts of that following six months or so...Relying on photos and notes I took, and my husbands' memory .

Aly couldn't sit up on her own until she was one year old .

She never crawled, just began scooting around on her butt at around 18 mos months old. Aly's paediatrician referred us to a physical therapist shortly thereafter. The therapy helped and Aly began walking at nearly two years old. We were told that Aly had low muscle tone and chronic constipation . What we didn't know then is that this is common in girls with Autism.

Aly spoke very little , communicating instead by pointing and grunting. When she finally began to string a couple words together , at around two and a half years old , we noticed that she spoke in an unusual tone. Aly had a kind of a fast sing- song cadence . She insisted on playing with her toys the same way and showed very little to no interest in other kids. Aly started flapping her hands and clenching her teeth when she was anxious.

A few months later Aly began to refer to herself in the third person. She continued to fail to meet her milestones in speech , social , fine & gross motor skills. Each time we voiced our concerns to Aly's paediatrician about her delayed progress , we were assured ''All kids learn at a different pace ''.

Assured, but not REASSURED. We began to grow irritated with that phrase. Our daughter would cry if her blankets were in the wrong order or if her blinds were ''too big or too small'' (open too much or too little) She was hysterical at the sound of the vacuum cleaner or law mower, covering her ears and screaming , rocking back and forth. Aly flipped out at the sight of a fly or a helium balloon. If her routine changed by even a little (such as brushing teeth before her p.j.s ) she would have a meltdown . Aly spoke at us, not to us. Something was going on .

Based on her inattention , hyper nature and difficulty following directions we began to suspect A.D.H.D. A logical idea since I have A.D.H.D. and it is known to be genetic. After further study , Autism Spectrum Disorder kept coming up in my searches . In the ensuing months I read a lot about Autism. I spoke to those who suspected their kids of having ASD and reached out to online support groups and shared stories.

In the meantime , Aly struggled to relate to other children. She didn't understand how to approach them . Aly had a hard time starting a conversation and could not sustain one . She showed little to no empathy if someone was sad or hurt . Wild tantrums and meltdowns continued. At times Aly would completely shutdown and a brick wall would go up. She would lose it in stores. Aly had a need to touch particular things in her environment and would flip if she was interrupted . It was growing harder and harder to keep her happy. 

Many nights after Aly went to bed , I cried. 

I cried because I felt like I was failing as a parent. I cried because I felt guilty for crying . 

It was an emotional roller coaster to say the least .

My husband Josh would only accept that it Aly had A.D.H.D. Autism was too scary a thought for him to even think about. Aly's paediatrician wasn't convinced either. She did a very short Autism screening and said ,''No , Aly is fine . First time moms worry too much . It's sweet.'' She laughed and gave my husband that look. That 'she's just a nervous Mom and imagining things' look. I tried to talk it over with her and she became offended. I said ,'' Look , it is nothing personal , but you aren't a psychologist and if it is all the same to you , I am having Aly tested'' She laughed at me again .
I stormed out and didn't speak to Josh the entire way home and for some time after that. 
Finally Josh came to me and said ,'' I don't think it is Autism , but if you feel this strongly .... I have to support you and we should have her tested.''

So there we were, one year ago now,  in that stuffy waiting room with our beautiful four year old. We were called back to sit in an observation room , while a behavioural therapist and a psychologist took turns playing with Aly and testing different scenarios. Aly began wriggling her fingers and clenching her teeth when they spoke to her. The psychologist pulled out dolls and tried to get Aly to join in. Even after Aly warmed up to the doctor she still had very little interest in imaginary play .Aly preferred to spin a top on the table. The doctor began to test Aly's social skills . She pretended to get a paper cut. Aly kinda of laughed nervously and looked away . Together the therapist and doctor enacted similar scenarios where Aly was meant to acknowledge an emotion or need of another person (the doctor, behavioural therapist or I ). Aly did not pass. She struggled with strategy scenarios, but did well with the puzzles. The whole testing and pre-testing was VERY thorough . It lasted about 4 hrs.

Afterwards the doctor and specialist discussed the test in private. We bundled back up and took a walk through the little park on the corner and checked out some books at the library as we waited for the results.

About 40 minutes later , Josh and I were called into the conference room while Aly played with an aide in the next room. The doctor explained how the testing worked and showed us a developmental chart. What stuck out to me was Aly's verbal and expressive development. Aly was 4yrs old but was assessed at a 2year old level. I saw that and held back the tears as I placed my hand over Joshs'. We knew that Aly was behind, but had not realized the extent. ''With all the information we have gathered , we feel confident in diagnosing Aly with mild to moderate Autistic disorder. ''(Not Aspergers ,as I had thought) 

They said that they weren't sure of the severity just yet.

The doctor and therapist acknowledged that Aly is warm , eager to learn and has a pleasant attitude . They taught us new ways to communicate with Aly and how to teach her to learn in a way that she understands. The doctor explained that there is no telling how fast Aly will develop. She was able to tell us what Aly will likely struggle with her whole life. Social situations in general ,empathy , metaphors and other figures of speech, sarcasm , some humour , body language , and more. We learnt a lot that day. And our life changed considerably.

Here we are , 1 year later and Aly has blossomed ! For starters, she became potty trained just before her 5th birthday, finally ! Her speech has improved exponentially , meltdowns are fewer and farther apart and she is learning to better deal with her sensory sensitivities. Aly looks forward to social situations even though she struggles with them.

Aly is a very high spirited girl. When she is happy, she lights up the room. She loves puzzles, books, crafts, science , board games , nature. She collects rocks and seashells and enjoys observing ant colonies. She's the light of my life. Our life is not what I expected when I pictured life as a Mom, but in many ways, so much better. 

I love how kids force you to slow down and see the world from a different angle through their rose tinted glasses and wide eyed curiosity. While it is true that we weren't expecting this particular journey , I am in love with our little tour guide.


Corinne Corcoran

No comments: