I slid down the kitchen wall, into a puddle on the floor. I was hysterical. Tears flowing. Hands shaking. And a voice inside my head said, “I don’t know if I can take care of him forever”.
It was the first time, any thought like that had ever presented itself to me. I never let myself think that. And it broke me that it had reared it’s ugly head. That one single sentence that unobtrusively worked it’s way into my mind, broke me.
When Brian was first diagnosed, I hoped, actually I KNEW I was going to help him get better. I was going to help him overcome every obstacle and he would become independent and he would talk and he would be happy. He would have the happiest freaking life you could ever imagine. There was no other way that his autism diagnosis could go any other way for him. Because I was going to fight and I was going to get every service available and I would spend every last penny traveling to see any specialist.
He was a responder too. Within weeks of going gluten-free he stopped his self-injurious behaviors and started to make eye contact again and started doing things like waving to people. He was happier, he wasn’t posturing, pushing his stomach against items and people to relieve pain. Omigosh, I was so excited.
We saw more changes with further diet changes and supplements added and every therapy you can think of. But I wanted the magic fix. The one that took away his autism. The one that would allow him to be happy. The one that would give him independence.
We haven’t found it.
Slowly, KNOWING he would be independent, turned to HOPING he would be independent which turned to the truth looming over our heads. Now at eleven years old, we know he will always need help as an adult. I have never faltered in the fact that I would always take care of him. My husband and I have already made plans to eventually add an in-law apartment to the house for him. We know that’s the truth. I STILL do not falter in the fact that I WILL take care of him, even with ugly thoughts rearing in my head.
There’s not even any way for me to write about the feeling of your son snapping and hitting you repeatedly with both arms swinging, him trying to bite you, him hurting himself, and looking into his eyes and not even seeing him in there. And feeling so alone. Even though you’re in public and dozens of eyes are staring at you like you’re an exhibit in a zoo.
And then thinking about whether or not he’s going to have these regressive, aggressive periods each year. And if he’s going to keep getting bigger. And thinking that you can handle the hits, but it’s the emotional piece. The piece that tells you something is wrong and is hurting your child and you can’t do a damn thing about it. That’s what I’m worried is going to break me, not the hits.
I cried for over an hour. I was crying for my son. I was crying that his obsessive-compulsive routines and patterns are taking over his life. I was crying because he has no way to communicate those to me. I was crying because he gets to these points where he is not himself, he is not in control of his body, and he’s so utterly frustrated. A frustration none of us can truly understand because we don’t have OCD. We don’t have autism. We don’t have sensory-processing disorder. We can talk. We are in control of our bodies. We are generally accepted in society. We aren’t stared at. We aren’t made fun of. None of us understand what he is feeling. I cried because no one has answers for us. I cried because some professionals refuse to even look any further for other courses of action. I cried because some of them have just settled.
I refuse to settle. I refuse to take these aggressive periods that pop their head up each fall as who my son truly is. I refuse to give up on him. And I will always, always take care of him.