So off, after dinner, the family went to Michael's. But first Mom and Dad decided to go to Bath Bed and Beyond to pick up a canister of CO2 for our wonderful seltzer maker. Have you seen these things? I got one for my birthday from my awesome SIL Cindy and MIL. Terribly cool - we use it all the time!
Sophia has known for sometime that Zach has autism. She even understands some of the details - or symptoms of autism. But that doesn't mean she gets it. Nor do I for that matter. After our purchase at Bed Bath and Beyond we were off to Michael's. On our way out the door, Sophia said "Hey Mom - it's not that far away - can we walk to Michael's?" I was struck that she wasn't being lazy and preferred to walk. The boys went off by car and Sophia and I went off by foot.
Was this a purposed move to get me alone? I am not sure. But it wasn't going to stay innocent for long. Here is the conversation that immediately followed and, frankly, left me, of all people, speechless:
Sophia: "Mom, is autism a bad thing?"
Sophia: "All those people at our house all the time. Are we trying to train the autism out of Zach?"
The only thing I managed to stammer out was that Zach was different, and that I loved him, autism or not, that being different does not make him less of a person nor less lovable.
But it left me with a distaste in my mouth. I felt that all this time, I had forgotten some basic fundamentals behind all this. At first, I was trying to beat autism - there was that time window that we were trying to beat. We are slowly about to exit that window now - and no where near where I had hoped. He still is not talking, he still has little understanding of what I am saying, he is more and more obviously different than his peers as time goes on.
These questions Sophie asked, simple as they may be, with obvious good choices in how I could have answered them, were left unanswered. This wasn't about sounding good. I can speak eloquently about these things. But I am tired of facades. I need this to be real, true. I wasn't going to lie to her about such a profound and important concept, that in all honesty, I need to answer for myself.
What am I fighting for? What is the goal here? What are we trying to achieve? What do the therapists, teachers, all the practitioners involved think is happening here? Are they just working for a paycheck like I did all those years as an engineer when I was definitely not working on things I felt passionate about? Is this all a scam? Would he be better left alone to evolve and develop on his own will? What is my role in all this? Is autism bad or is my desire to make him as "normal" as possible the problem?
Sophia's questions, honest and important, and I said nothing meaningful back. I was left numb. And that was not the worst of it.