This is the second "Autism Awarness" gem I have up my sleeve this month -- a guest post by my friend (or at least she is in my head, not that I have actually met her or anything), Caitlin Wray who writes beautifully at the blog http://www.welcome-to-normal.com/ about her darling son Simon, who was recently diagnosed with Aspergers and her equally adorable 1 year old Seth -- not to mention her hubby and herself. :)
Her article is a personal account of the moment most of us have experienced-- the moment where a doctor says "Autism" and our world changes. And yet stays the same -- all at the same time.
The whole universe seemed to fall silent as my son’s Educational Psychologist spoke this alien word. In my mind’s eye, the word is slurred in slow motion… I remember nothing but the shape of her mouth as it passed her lips. Aaaauuutttiiisssmmm. For that instant in time, I lost all my intellectual and emotional reference points. My husband and I were floating, suspended in a vacuum of inverted hopes, dreams, and expectations for our six-year old son.
Our baby, Seth, brought me back down to earth as he tugged at my hair. The psychologist continued with her assessment of Simon: Aspergers. Sensory Processing Disorder. Possible ADHD. Gifted.
This wasn’t a complete surprise to me. I had suspicions, but only very recent ones. Until his 6th year, Simon had shown no signs that would cause concern. We were the typical proud parents of a baby who hit every milestone early. He spoke at around 7 months and by age 2 was profusely verbal. By age 5, he had a vocabulary that rivaled that of some university students, and as he drifted off to sleep each night he mumbled multiplication problems to himself. He was spirited, bursting with enthusiasm for life and learning, deeply compassionate, compellingly naïve.
But in Grade 1 everything changed. He developed baffling reactions to everyday experiences – sand on feet, glue on hands, tags in shirts, waistbands on pants, seams in socks and underwear. All of these, and more, would send him into complete meltdowns the likes of which I had never seen before in any child. They were unreasonable, irrational to me. For the first time in my life, I could no longer relate to my own child.
His teachers reported behaviour problems in the classroom – hugging too tightly, tackling people, touching too many things, moving too many times, yelling too loudly, listening too little. He was by all accounts just too much. I had always known he was “different”… but I didn’t realize the extent to which that word would come to define and consume us.
Those first few hours after the diagnosis were a fog. My husband had to get back to work for an important meeting, and I had to get the baby home for a nap. Life carried on as usual for the rest of the day, which seemed absurd since the world had so clearly shifted its axis. As the baby slept, I googled. And googled and googled some more. The psychologist told us that, because Simon was so far to the high functioning end of the spectrum, he could essentially “learn how to not have Aspergers”. This sounded very reassuring indeed. Phew. He didn’t have real Autism. He had the kind you can out-smart. The kind you can teach yourself not to have. We would help him get there. Much of what my internet research found that day reinforced her words. There were many therapies available to ‘de-autise’ him. We would all be OK.
I explained this to my husband that night, after the boys were in bed. But despite my upbeat positive tone, he still wept. He hadn’t spent the day googling and building himself up for the task of taking down Autsim. He had spent the day in meetings, feigning interest in pie charts and explaining progress on IT issues, desperately trying to keep the word Autism at bay until the end of the work day. He came home, smiled and cuddled his way through the boys’ bedtimes, and then the weight of the diagnosis fell on him - hard.
I never thought I’d find myself quoting Scarlett O’Hara, but it’s so true that tomorrow IS another day. My husband and I needed that first day to really let this diagnosis settle in. By Day 2, the word Autism no longer stretched out like a slow-motion movie. I could say the word without hesitating. I expanded my Google searches. I made Amazon my best friend. I discovered the world of the Blog and with that, an unknown galaxy of perspectives and opinions and insights that challenged our initial view that our son needed to be cured of his Autism.
In those first raw days of the diagnosis, we were introduced to the intense litany of controversies associated with Autism and its treatment options. At first, it felt like there were only two sides, and we needed to choose one before we could move forward. But the more I explored different perspectives, it became clear that this spectrum is not a dual-ended object, it’s a multi-dimensional continuum of differences and similarities, gifts and challenges. Our family is very much at the beginning of this journey, and we don’t have all the answers yet. What we do know, is that our approach will demand change from the world, more than it demands change from our son.
And the world is changing. Autistic people are shaping the future of the planet in ways that benefit us all. They are opening minds, dispelling myths, challenging old ideas and introducing us to new ones. They are redefining Normal.
As I broadened my understanding of Autism, I realized I had let myself become so consumed by the implications of a label, that I had almost lost sight of my own son. I made my way back to the understanding that fundamentally, nothing had changed. A doctor in an office had defined a set of behaviours Simon often displays, but she had not defined Simon. My role as a mother, my husband’s role as a father – they hadn’t changed either. The definition of “Autism” helped us to understand Simon, but the task of raising our son to define himself remained intact.
And soon, I felt the overwhelming fear and intense worry ease away, and I was filled instead with the same emotion I felt when Simon - his whole life measured in mere moments - first gazed up at me on the day of his birth. The same emotion I have always felt when I think of my son: pride.
I am proud of my son. I love him beyond words. Autism will complicate my family’s journey, of that I am certain. But it will also enrich our journey in ways that are so powerful, I may never fully comprehend them. And when it all starts to feel like too much, we will retreat to this core place of pride and love for our son, and then truly, we will all be OK.
Thank you Caitlin! Please leave your comments for Caitlin below.
If you haven't checked out my interview with Dr. Roya Ostovar, please do so, and without giving too much away -- be sure to leave your questions for her in the comments section below the interview -- who knows, she might just answer them. ; )
More to come for Autism Awarness Month!