“Your instincts were right.”
This is what I would tell my past self — the self whose 13-year-old just got an Asperger syndrome diagnosis.
When he was 2, I knew something was up with my son. But no medical professional or therapist ever mentioned or discussed a possible explanation for his developmental and social issues. When he played with cars, he turned them over, placed them up close to his eyes and watched the wheels spin and spin and spin. He was fascinated by light, and we’d go from mall to mall during the holidays to look at all the Christmas tree displays — and they had to be the multi-colored lights, not the plain white twinkles. He was captivated (no, obsessed really) with the Tyrannosaurus Rex and collected every toy, book and VHS on his prehistoric pal to learn and talk about it, literally nonstop. He paced around and around our coffee table engrossed in self-conversation.
With those kinds of behaviors and his milestone delays, I’d ask medical professionals, “Is he autistic?” The response was always a categorical “No,” followed by varying responses like… I’m an overbearing, overprotective, overreactive mom who just needs to relax and not worry so much.
“But now, you know for sure,” I’d tell my old self and feel comforted in the fact that I had my son’s back from day one and was already doing what was best for him. What I didn’t know then but know now is that my life would have no meaning, no depth, no purpose if it wasn’t for autism. I didn’t know that introverted, low-key me could become the persistent, relentless warrior parent who advocates for him and others so they can grow to their best potentials.
I’d tell my past self this:
“You’ll become a foot soldier with your eyes and ears constantly on the ground to clear your son’s path and scout for individuals and organizations who can join your ranks of support. You’ll be a covered wagon, pioneer woman blazing a trail into the unknown to create a better life for him. You’ll don your virtual business suit and become Mom, CEO to pitch for services and make sure everyone works together on the business of building your child’s self-confidence and skill set. You’ll be Dorothy, Lion, Tin Man, Scarecrow and the Wizard of Oz combined, using all of your powers, influences, creativity, fast-thinking, courage and heart so your he can (and will) thrive.”
I’ve played all of these characters and taken on even more alter egos from Sherlock to Iron Man —whomever my son needs me to be at any given point in time. Today, he’s 29 years old living in an independent living environment, driving and working as a voice actor. Does he still struggle and need more attention and support than my neurotypical daughter? Yes, but every day I see him needing just a little less of my oversight, and I just get to sit back and enjoy the incredible man he has become.
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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