Friday, February 05, 2010

Why Autism Sucks Today

Before I start, I just want you to know I'm not having a bad day and I'm not in need of a pick-me up or sympathy. Just stating the facts.

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.



You know, I wish I could say I know exactly what you are going through, however, the truth is none of us - not even those of us who have the commonality of being parents of children with autism - knows exactly what another person is trying to handle at any given time.

Having said that, I can say that I do know exactly what you are saying when you are honest and say that you hate autism but that you don't hate your kids. I have tried many times, failed, and given up on attempting to express these same feelings with parents of only typical children.

So, I know you said you weren't looking for sympathy but (((HUGS))) to you! I, for one, could have used one yesterday. It was a baaaaaad autism day for us here.

On a side note, I cannot you guys do GFCF/biomed treatments?

Viv said...

Hey Stacey, that does suck. You wanna know what didn't suck? Starting my day with a post from you at the top of my reader. That made me smile, before coffee even. ;)

otin said...

I like the disclaimer. Sometimes we just need to state something without hugs or sympathy. Autism is very unfortunate.

Sarah @ When two becomes three... said...

I have crap vision and I totally hate it too. It's a part of me, I have experienced things that have shaped me because of it but it still totally sucks. I get what you are saying. It's hard carrying a heavier load.

Nianya said...

HUGS. . .that's about all I can say; it really does bite sometimes.

Anonymous said...

Love you!
And what sucks for me, I can't just pop in and give a hand,
Living in Calgary has been wonderful for the boys treatment,
However, Autism has taken my family away from me.. poor me..
I miss helping out!!!

Christa said...

What you have written is exactly how I feel but have struggled to say. Thank you.

Tracie said...

Yep. That sucks for sure.

I hope you have a great weekend!

Anonymous said...

Hey Stacey, I agree with everything you said, I have always hated Autism but never the people affected by it. Just like l hate CP but l don't hate myself l am who l am and for the most part l don't even know l am different l am just me, and thats how l think of Eric, Owie and Will are they are just themselves and to me they arer't different just the sweet boys they are. ps Glad your writing again l have missed ya, Love Mo

Anonymous said...

Nice to see you're back. I spend my days with your amazing beautiful boys and think that they are very lucky to have you as a are awesome! :)

Twisted Cinderella said...

((hugs)) I am having an Aspergers sucks day here today.

Unknown Mami said...

I don't think you ever have to apologize for saying that autism sucks. It is very clear that you love your children, every part of them.

Nezzy said...

Yes, it does. You also have very unique children with very gifted aspects of their lives. Never apologize for sayin' it sucks for we know you couldn't love your boys more.

Ya'll have a beautifully blessed day!!!

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