Autism Matters: Hear Me

*Disclaimer: This is an emotional post for me and many whose path it may cross. My intention is that it is authentic; let’s be real in our discourse, yet sensitive. Secondly, I am not writing and linking to the post from Today to invite a discussion or debate about genetics versus environmental causal debate.*WAAD

 

 
I love many individuals with autism and each person has helped me grow, find joy, and love without boundaries. The why or even the what doesn’t matter. People are special and have value for who they are. #lovewhatmatters

This particular day was rough. It seems as though I’ve been losing control of everything—being challenged to relinquish control of plans and ideas and perceptions and paradigm. I am overwhelmed at work; it’s the busy season of last minute meetings, teaching the final parts of your curriculum, testing prep, enrollment for classes for next school year, etc.

But this week was rough all over like one of those nubby, rubber bouncing balls that really doesn’t go with any sport, it’s  just a novelty.

So today…today I was reminded why I write.

My daughter has special needs. I could list all the diagnoses; they’re not her identity. But today I was overwhelmed everywhere, feeling like a boat taking on water. She needs me. She needs me. She needs me to make visuals, to be her voice when she cannot find her’s or when her behaviors are her voice (the normal and the quirky).

When I arrived to pick her up, I misunderstood her abnormal behavior that usually communicated she wasn’t ready to leave Grandma’s and Grandpa’s. I was in full on mom’s-gonna-need-a-cry time. We made it home and I hid in the bathroom (if you’re a mom, you understand.) And then this Today article written by Carrie Carriello was in my FB newsfeed. And what I’d been praying for—a friend who understands-really understand—was answered. Here is a mam

aLLYSON SOCCERa who could relate, sympathize, not just empathize, with my life and my inner thoughts.

“I am a much different mother than I expected to be,” she writes.

I cried. I was hit with the emotions of what it means when someone writes what you feel, what you know, but think no one else sees. Someone else deals with the tens of thousands of questions a day about the same thing. Someone else has the temptation to ask, “why”. Ours is not the story of genes and whose side it came from, but our why is: “After the heartache of infertility from painful endometriosis and the year-and-a-half fight to adopt our daughter, why autism, anxiety, ADHD, and sensory processing problems?”

When we write, when we are real it helps others. It was good today to have someone else tell me she does the same things with her child. She has the same thoughts as a mama struggling to do her best and demonstrate patience when answering the same questions day in and day out. Even though there’s routine, even though there are schedules written down and visuals for her routines, sometimes it’s not enough. And then there was this that opened the faucet of tears, again:

“Underneath it all — the tantrums about a missing pillow and the small orange vial with the little white pills and hundreds of questions about the schedule, I know he’s trying to tell me something else entirely.  Make room for me. I am here.” (Carrie Carriello, I Know Why He Has Autism)

I know my daughter’s telling me something when she can only speak with one word, when she throws her body into me or the seat of the car—See me.