By saying that autism sucks, I am not saying that I hate my children. I concur that autism is a part of who they are, but just because I hate it, it doesn't mean that I hate that part of my boys. But you can't tell me that a person who has Multiple Sclerosis or blindness, loves all that those afflictions bring to them. We can embrace the uniqueness that autism has distinguished upon them, we can be grateful for the life lessons that it has taught us, we can even say that we wouldn't have it any other way. But for Owen and Will, at this time in their lives, I wish we had never heard of the word autism.
I'm not completely sure if Will and Owen are cognitively aware of their differences from their same-age peers. However, I do believe that they are not oblivious to the anxiety, fear and frustration that their challenges put upon them.
Will's predominant challenge is his OCD (Obsessive Compulsive Disorder) traits. Will goes through periods where I believe his mind is absolutely consumed with the tormenting desire to control his environment. He can fall asleep after a bout of repeating the same sound effect he heard on a video, a couple hundred times, and before you can make eye contact with him to say good morning, his mind is already distracted and drawn back to making the sound over and over again. It blocks out the outside world, it raises his anxiety, it frustrates him when he ups the ante and he realizes he can't achieve his goal. He is tormented. I believe that Will's OCD has interfered with his communication as well. Where he could once utter a complete word and enunciate each of its phonetic parts, his OCD has caused him to manipulate the sounds so that they are no longer intelligible.
Autism sucks for Owen. Seven years old and Owen is still in a diaper. He has never been an eater; at his best, he may have eaten from a diet of 4 or 5 items and for the past two years, he eats no solid food and still drinks from a bottle. Owen cannot speak and he continues to struggle with physical challenges and fine and gross motor control. He is such a lovely little soul, generally a happy and loving kid and is smart as a whip. But in a world without language and two older brothers usually hustle him out of the way to get what they want, Owen seems to have little control over his surroundings. So what CAN he control? His eating (or lack thereof). Toilet training. Refusing to follow instructions. It's understandable though, isn't it? As frustrating as it is for us, it breaks my heart to think that he's not eating just to exert some control over his life.
This post could go on forever so I'll quit while I'm ahead. Autism will still suck tomorrow. But I'll be focusing my attention on my sons and not their challenges.