When I Think About Our First Year With Autism

If I could go back to the day it all started I would tell myself this is not the end; it’s only the beginning.

On August 28, 2013, my son, Dylan, was diagnosed with autism spectrum disorder.

I remember sitting in an exam room at Boston Children’s Hospital. The green plastic chairs and brightly colored toys punctuated the colorless room. It was a day just like any other day. My son had previously been examined by a neurologist, an audiologist, a geneticist, a gastroenterologist, a dermatologist and early intervention specialists. Now we were sitting in the Office of Developmental Medicine, and I was expecting to hear the same thing we’d heard every other time — that one disorder or another had been ruled out, but maybe you should see another specialist in another field.

IMG_2435 Only there was something different about this time. I could tell by the way the doctor was speaking to me, listing my son’s strengths, softening the blow that was coming next.

When she said the words “autism spectrum disorder,” I fought with everything I had to hold back the tears trying to sneak their way out of the corners of my eyes. I remember being angry with myself for being unable to control my emotions. I remember being ashamed that my body was trying to mourn my child who was alive, playing with trucks on the floor. And I recall wandering through the parking garage, finding my car, sitting in the passenger seat and not speaking for the entire ride home.

Summer turned to fall and I found myself dealing with therapists, the public school system, educational advocates and more doctors. As my son’s sign language turned to speech, I learned that Itoo could vocalize new things; I was capable of advocating for him. When he became steadier on his feet, I too felt strong enough to conquer this curveball coming at us. And even though we were making progress, we both experienced setbacks and regression but continued to crawl forward.

Fall became winter and with it, the snow began to fall from the sky, and my husband and I began to float away from each other just like the flakes outside my window. Things continued to change, life continued to move forward; the world doesn’t stop because you have a child with autism.

Over a year has passed since that day at Children’s Hospital, and today I sit here writing, looking back not on where we’ve been but at how far we’ve come. And although I know our journey together will not be easy, I know it will change us for the better.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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