I want to blog about autism this month. To share information, but also mainly to put a face, a reality, to the statistics and news blips you’re bound to hear during this awareness month. But I’m finding it difficult to harness the words because autism isn’t just a disorder or disability.
It’s my son.
I could tell you that autism is the fastest growing development disability in our country with 1 in 88 children affected.
I could tell you that it is more common in boys than girls. (An estimated 1 in 54 boys and 1 in 252 girls)
I could tell you that although research has shown us a lot over the last five years and has identified more than 100 at risk gene factors and although we know that there are environmental triggers, we still know precious little about autism.
But this is really what I want you to know. Autism is a battle. Everything about it is a battle…a fight…a struggle. It’s causes…it’s treatments…insurance…to medicate or not…gluten free or not…educating yourself…educating others.
Sometimes you battle yourself. You fight for a shred of patience to not respond or react to the behavior. You battle regret when you can’t find it. You fight with every fiber of your being to find the key that will unlock a particular situation for your child. You fight a constant doubt that you are doing the right thing…doing enough…making the right choices because your child can’t.
There are times when you actually battle your child. You beat back the dragon that seeks to pull him inside of his own head and close him off from those around him. You fight to engage him…to force him into the world that exists behind a glass wall that allows him to see but not fully be a part of that world. It’s taking a sledgehammer day after day to things that hinder communication…to understanding…it’s moving rocks and boulders to create a road from where we are to where he is.
We fight day in and day out for our son…not because he is broken and needs to be fixed but because we know he is fearfully and wonderfully made. God handcrafted this child of ours and caused his brain to work differently. And it is for our good. Sam adds dimension and texture to our lives. He adds a perspective that enriches and humbles. It’s child like faith…it’s simple and uncomplicated…beautiful and precious. We fight not so much for him to understand us but so we can see what he sees and be where he is.
Honestly, it can be exhausting. There are times when I am not sure we are up for it. That it’s too big…too much. But then I remember that we aren’t doing it alone. God has graciously placed us in community; one full of people that love Sam and seek his good just as much as we do. They encourage and strengthen us. They look for ways to be a part of Sam’s world.
And that’s how the battle is fought and won. That’s what you need to know. That is what families who are affected by autism need…community. They need to know they aren’t fighting the battle alone.
I want to end each of the autism posts with a Sam story. I really wish you could know him…he is so funny. This is probably one of Rob’s favorite stories to tell about a conversation he overheard Sam having with Claire:
Sam: Hey, Claire let’s play Rudolph the Red Nose Reindeer!
Sam: You be Rudolph and I am going to laugh and call you names.
Claire: (Realizing that this doesn’t really sound fun.) I don’t think I want to play anymore.
Sam: No, I’m not going to let you play.