Last week Collier said something to me that broke my heart. While on the way home from speech he turned to me and said, “Mom I wish I didn’t have autism. I wish I was normal like all the other kids.” For a moment I couldn’t breathe, I almost felt like my heart had stopped beating. A virtual tidal wave of emotions flooded over me.
You know how sometimes in a movie thirty seconds of action will be revealed to have taken place in just a few seconds in a character’s head? That’s how the next ten seconds felt for me. I found myself playing through a million different things I could say and how I should respond. I finally threw up a Hail Mary prayer and opened my mouth, still a little unsure of what exactly to say. How to best let this incredible young man know just how awesome he is.
I let him know that he is perfect just the way he is. I pulled out Psalm 139 and reminded him that he is fearfully and wonderfully made, that his autism just adds to who he is. That he made our family complete and that we love him to Pluto and back infinity times (one of our “I love you” routines includes distances to planets). He blushed a little and gave me a little “Mooommm,” and then started talking about his favorite Dude Perfect videos. Whew, I thought, not too bad.
But the next morning during my quiet time as I thought about it again, I really started to think about what he had been saying. My son basically told me, Mom I don’t like who I am. This person that I absolutely adore, that changed our world, and has taught us so much… struggles with who he is. I couldn’t also help but think, is this my fault?
While we started homeschooling to help him learn at his own pace, did he think it meant we didn’t believe he was smart enough? Does the way we slowly and deliberately teach life skills come across to him like we don’t think he has the ability to live on his own? Has he seen our trying to find supplements and medications that help him regulate his emotions and body as us saying something is wrong with him? Has my trying to help caused more harm? While I’ve been preaching autism acceptance to the world have I shown autism opposition at home?
For me, part of being a special needs parent has always meant suffering from “not enough-itis.” I’ve never felt like we’re doing enough…whatever. We’re not doing enough life skills, or providing enough social interaction…or going to enough therapies…and the list of “not enough” keeps going on and on.
The words I had told Collier the day before about how he was fearfully and wonderfully made came flooding back into my mind. I knew then if I really believe that, I needed to start reflecting it more. To stop worrying so much about the future, and start enjoying the gift of today. To show my son that I love him right now, just exactly how he is. To make sure he knows that autism is a part of who he is and a part of how he was woven together.
Right then I asked God to forgive me of ever making one of his creations feel less than precious and I laid my “not enough-itis” at his feet. I’m trying hard to leave it there. I’ve discovered that if I’m tempted to pick it back up, a well-timed game of HORSE helps distract me. Maybe one day I’ll even beat Collier. In the meantime I’m committed to making sure he understands autism is just a part of who he is; like his blue eyes or cute smile. And to make sure he knows we love ALL the parts.