Normal life?

Apparently there is a new book about autism that I need to read. This afternoon I was reading an excerpt from Making Peace with Autism: One Family's Story of Struggle, Discovery, and Unexpected Gifts by Susan Senator, and it felt so true to my experiences that tears came my eyes. She writes,

We as a family are frequently hamstrung by Nat's unpredictability, our plans held hostage by autism. We can never simply go to a concert, a movie, a friend's party without first wondering, “Can Nat handle it?” Despite intensive schooling and our Herculean efforts, he still has tantrums, and even when he doesn't, he can be just plain unpleasant, unhappy, or embarrassing in public.

This certainly isn't what Ned and I expected when we began our life together. Having Nat has tested our marriage, forcing us to stick together even when we have been tempted to run. Ned has had to adjust his career; he has chosen to be a family man rather than a company man. He says he's never looked back, and I believe him.

Sometimes, though, I wonder what life would have been like if Nat had been normal. I try not to get to that question, but inevitably it comes up. I look back, I look forward, and sometimes all I see are sad and scary realities. But still I look, because that is how I learn, and how I get through a day. By looking at it all honestly, I come to understand how we function as a family, what has worked for us and what hasn't, and, maybe, I can get a sense of what might be coming next.

Like the author I sometimes feel like autism holds us hostage. I always have to wonder if we're asking too much of Q, if he can handle what we're planning. Many times we take him out hoping to broaden his experiences and have some fun ourselves, but spend most of the time dealing with his constant refrain of "I want to go home." Home is Q's safe space. I think he'd almost rather be home then anywhere else. When you change his routine or require him to do something he doesn't want to do (from something as simple as going to the bathroom to the more involved like getting ready to go to school) the screaming starts. "NOOOOOO!!!!" he says over and over. "I don't want to!!!!!" is one of his favorite things to say. It gets annoying and difficult to constantly pull him through his day trying to get him to focus on the world outside himself. I struggle with trying to engage him while giving him some down time. And I also struggle with trying to get him to do things for himself. Since getting him out of the house is a major fight in itself I often don't push him to put on his own shoes or put on his jacket. I do it for him because it is easier for me. I only have so much patience. In the back of my mind though I know I am not helping. Q will have to learn to stand on his own one day. Unlike many children who strive to do things themselves (C hardly lets me do anything for her.) Q is happy to not worry about these things.

DH is not someone who could leave his "company" to become a family man. His vocation of teaching is his life. Sometimes I struggle with that since that means that I often have to be the one to deal with Q and manage his therapies and deal with him daily. I am jealous of DH because he gets to opt out and I don't. I thought working might help and it does to some extent, but though I do get a day or two to focus on something else, it just seems like I have added to what I already had to do. But that is who DH is and to be honest I understand wanting to escape into work. I just wish I could do it too sometimes.

I don't often think of what Q would be like without autism. It seems impossible to separate the two. Autism shapes the very core of who Q is, what he cares about, how he approaches things. I can't even imagine who he would be without it. I do wonder what things would be like if some of the more negative aspects of autism could be reduced. What if he could make transitions easier? If speech came easier to him and auditory processing didn't take him so long? What if he could pretend play without needing a script to follow? He could still be intense and obsessive. He could still love to jump and crave big hugs. But what if life could be easier for him and as a result, for all of us? I guess I hope one day that's what it will be like. Q will still be Q but it will get easier for him to deal with life and he will learn how to cope.

Sometimes I wonder what Q will think if he ever reads these entries. Will he think I didn't love him as he is? Will he feel guilty or angry? I hope he understands that we always loved him and wanted the best for him. It was hard for us yes, but it was hard for him too. It's no fun to not know what is going on around you, or how to answer questions being asked of you. It's hard to not know how to regulate your body or control your impulses. As difficult as it is for me to sometimes deal with his behavior, I know it is more difficult for Q to just go about daily life. I hope Q knows that he has taught me incredible lessons and I am a much better mom because of him. I went through so much to have my beautiful son and no matter what has happened or will ever happen, I would do it all again in a heartbeat. Who wants a "normal" life anyway?