I’m going to preface this by saying that in the grand scheme of the autism world, I am very aware we got off relatively easy. I’m also stating that E has made extreme progress since his diagnosis 18 months ago. And he’s been in a pretty good place the past few weeks, despite the excitement of his birthday and party, and being out of routine with Spring Break.
But there are days I just want to quit. There are days I desperately want an unbroken child. And I feel totally guilty about that. Yet I am just tired. I am mentally and emotionally wiped out, exhausted, drained.
I am tired of trying to stay one or two steps ahead of his thought process. I am tired of the endless science questions for which I have few answers other than “Look it up on the computer.” I am tired of being constantly vigilant of his triggers and avoiding meltdowns. I am tired of mentally working out situations so to avoid power struggles. I am tired of having to remember to take his headphones with us. I am tired of the frequent arguments to get him to do something besides play on the computer, the Wii, his iPod or DS. I am tired of having to drag him, arguing and whining all the way, anywhere he doesn’t want to go. I’m tired of the daily battles over meals and what he will or won’t eat. I’m tired of feeling like we are continually in crisis management. I’m tired of doing everything I can to avoid scenes in public places. I am tired of the looks and comments when we fail to avoid scenes in public places. I am tired of trying to explain him to other, often ignorant, people.
He is work. He is a lot of work. Most days, I am okay with it. He is a beautiful, brilliant child with an amazing future ahead of him. His laughter, when we hear it, is infectious. His stories are witty. His smile lights up rooms. He can be charming, engaging, comedic. But he is work, most of the time. I can handle it much of the time. But there are days when I want to quit. I have reached my breaking point. I need a time out. I need to step away. That isn’t always an option. Those are the times I know I will fail him. Those are the times I will yell, the times we will get into a power struggle. I hate those days. For he is not “broken.” He is perfect in his imperfection. Thankfully, I don’t have too many of *those* days. But they do come, and they are as dark as his darkest days.