This morning Brendon ran up to his dad, threw his arms around him, and said "Giddy-up, Bullseye!" This means he wants a piggyback ride. Now you have to understand, the last time we had Brendon weighed a few months ago, he was a whopping 75 pounds. Add to this the fact that we are both in our forties, with deteriorated disks, arthritis, pulled muscles, etc.. But when your autistic mostly non-verbal five year old requests a piggyback ride BY GEORGE, HE GETS ONE!
When Brendon does say anything, it can be hard to understand. He gets close, but it still sounds like baby talk most of the time. Occasionally, we hear him say things perfectly and clearly, but not often. John has been really trying to teach him to say, Bye, Daddy! As Brendon and I headed out the door to school this morning, John reminded him to say Bye, Daddy! "Bye, Bye, Diddee," he said in his sweet little voice. All the way to school I thought about all the progress he's made in the past year. Being independently potty trained is still the crowning achievement. I thought about where we started, and how desperately I had searched for a book, blog, or story that I could see my own son in. I wanted to know what was possible. I wanted to read a real story about a severe, non-verbal kid, with absolutely zero receptive language, and parents who weren't able to afford 40-60 hours of ABA per week and wanted to know what that kind of journey would look like. What progress would be possible? What happens when you use the pitiful amount of hours your private insurance will pay for and combine it with anything the school system will offer?
Now, years later, I realize that no two kids on the spectrum will have the same stories or outcome. They may have a few similarities, but each will have their own unique journey even if they have similar behaviors and symptoms or even if they get the exact same treatments. Still, every book I ordered or downloaded off of Amazon was about how with a specialized diet and hiring just the right therapist, VOILA! No more autism! The books I read about how to work with a non-verbal child were much more helpful and they are the only ones I still have today.
If I could cure my sons autism, you bet I would in heartbeat! But I can't. And I don't think there's a human being alive who can. He is how God made him. I don't pray for God to make him not autistic. I just pray for God to help him learn to communicate. Mostly I pray for wisdom in how to teach him, work with him, and connect with him.
Maybe someday, someone will be where I was, looking for a story they can relate to, and they will read something about Brendon. Maybe it will give them hope to know that even if your child ends up on the moderate to severe end of the spectrum, it's going to be okay. It's okay to not mortgage every thing you own to pay for every new treatment and therapy available. Just do your best and never ever stop trying and hoping.
