Five Years After An Autism Diagnosis (part 1)

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.

In a few days we will celebrate our five year autism anniversary. I say celebrate because when I think of Norrin five years ago and I look at him now – I see a completely different kid. I have a lot to be grateful for. I have so much to hope for. But on the day Norrin was diagnosed with autism – May 19, 2008 – I couldn’t see any of that. Many people have read my blog posts and written to me asking how I came to be “okay” with autism. But I wasn’t always okay with it. Acceptance was a process for me. Any parent who has heard the words, “your child has autism” remembers everything they felt that day. Today I’m sharing that day with you and next week I’ll share what it took for me to be okay with autism.

On the day Norrin was diagnosed with Autistic Disorder and Global Development Developmental Delay, I felt my heart break. My husband, Joseph, had been so optimistic, so certain that it could not be autism. And I knew by the way Joseph squeezed my hand that his heart was breaking too. Joseph had all the dreams that a father has for a son and within seconds I could feel Joseph’s dreams crumbling. I could feel his leg shaking next to mine.

Even though I tried to prepare myself, there was that small big part of me that wanted to hear that Norrin was “typical” and that there was no need to worry.

On the day Norrin was diagnosed, I put my arm around Joseph in an attempt to comfort him and I thought of our wedding day. Everyone told us that we were perfect together. And then I remembered the moments after Norrin was first born: I immediately looked his wrinkled little body over, counted his fingers and toes and thinking that he was absolutely perfect. And there we were, this  seemingly perfect couple being told that our child was not.

We were handed a twenty-page evaluation, detailing all the things Norrin couldn’t do, all the milestones he had yet to reach.  At two years and three months old, Norrin had the cognitive level of a fourteen-month old and the language level of a seven-month old. I hated reading the evaluations: on paper Norrin sounded horrible. Nowhere in the evaluation did it talk about his dimpled smile or the sound of his laugh. Nowhere did it describe how his big brown eyes sparkled when he was happy. Or that he loved to read and was fascinated by letters and numbers.

Joseph and I cried in the car, neither one of us really able to comfort the other. Both of us thinking of all the things we could’ve done to prevent autism.

When we picked Norrin up from the babysitter, it was then that autism became painfully real.  Norrin was sitting in a playpen spinning the wheels of a car while the other children were playing. It was too easy to imagine how isolating and sad his life – our life – would be. This was not the life we were supposed to have, I thought.

Nothing I read prepared me for the pain, anger and sadness that I felt. On the day Norrin was diagnosed, I went into our bedroom, closed the door and buried my face in my pillow screaming as loud as could. Punching and kicking like a three year old having a tantrum. Why Norrin? Why Me?

Everyone kept telling me, “God doesn’t give us anything we can’t handle.” But autism and raising a child with a disability wasn’t something I wanted to handle.

On the day Norrin was diagnosed, I called up my best friend to tell her the news. After a few minutes, I asked how she was doing. She was seven months pregnant and excited about her baby shower. While I was happy for her, I couldn’t feel happy with her. Her pregnancy, her happiness and hope only reminded me of my loss.

On the day Norrin was diagnosed with autism, I cried myself to sleep. And I cried for many nights after that.

To read 5 Years After an Autism Diagnosis Part 2 click HERE

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