A Mommy Blog About Raising Men, Not Boys.

Thursday, June 25, 2009

How Has Autism Changed Your Life?

A social worker asked me that last fall. She was a really sweet, short little round person who had a disability herself due to a car accident, so I was more inclined to be kind to her rather than bite her head off which might have been my first reaction to someone else. Thus I was nice when I responded.

Change my life? Try define my life.

Autism defines my family's life. And while we are lucky that we refuse to be total hostages to it as I see some are -still there are concessions and changes that are probably invisible to the naked eye which we live with as begrudging captives. There are channels we cannot watch because little boys fear them (who knows why). You must close the door a certain way or there will be screaming. One child claps constantly. There is screaming when there is frustration - the type you will find in an 18 month old or two year old. When one screams, the other tends to scream.

So double that screaming please.

And then there is the unexpected. The things you can't count on but that with a "normal" child you work through together.

Scenario: Child is sobbing. Child appears to be in pain. Child is writhing on the floor and is inconsolable and the sobbing is becoming screaming.

Non-Autistic Child Solution: Tell me what hurts? Did you hurt yourself? Show Mommy......

and then you respond accordingly.

Autistic Child Solution: Remember when your newborn would scream and scream and you did trial and error to figure out what was wrong.

There you go. That's what we've been doing now for almost 12 hours on and off.

The best we can figure using parent-math is that he is constipated and is trying not to poop.

Parent math works like this. Variables are 1 or 2 X hours = normal bodily function/abnormal function ........so in our case 2 (0 X 24) hours = constipation. See you do use math in life.

With my oldest I can put him in bed and he'll snuggle and there might be tears but he'll settle down and sleep, comforted in my arms. But with my little math problem,such as last night, those comforts are fleeting. Because while he takes comfort from being with me - the meaning of my words doesn't sink in. That calm a mother can wash over a small child simply by being their mother doesn't apply. He hurts therefore- when it suits him, he must scream. Or flail. Or roll.

And then intermittently curl up into me and say Mommy. Or I love.

And I sleep for 10 more minutes before another scream cracks my ears.
You might think I resent it. Emma and I recently had a conversation people who resent their children. I might have fleeting moments of frustration and not so fleeting moments of heartbreak but all in all, no I don't resent either of them. Not even on morning like this when I'm drinking coffee like it's my lifeblood because my sleep was so interrupted. Since even before we HAD a diagnoses we knew something was off. And I suppose that in a way that was a blessing - it might've been more devastating to really think everything was peachy and then WHAMMO - Official Diagnoses "Not So Much".
And I never forget that despite the wicked unfairness of having one but TWO autistic children, there are people who have it SO much worse. Heart defects, physical trauma that leaves them hooked up to tubes and in custom wheel chairs. There was the story of the baby who had massive brain damage that they unplugged and expected to die peacefully - and who did NOT die at all. Now what? I am lucky. I am not one of them. It could be worse. I must knock on wood.

How has autism changed my life?

I couldn't begin to say.


Frank said...

Notice the twin in the background making sweet love to a bird statue? That's how autism changed my life.

rabidxdisease said...

I will start by sayin, i love your kids. True i never see them in their bad moments, they always seem to be happy and dancing when I'm around, but I often wonder if the universe gives us these situations because we can handle them, or if we can handle them so well simply because there is no other option. I guess its the constant debate on character. Do our experiences make up our character, or is the outcome of our experiences predetermined because we already are these people?

Either way, you two are great with your kids.

lonestar said...

I can so relate to this... I wouldn't know where to begin either. Autism is such a part of our lives the impact is there even when we hardly notice it anymore. I have twins with autism too, and their younger brother also has autism. Some days are rough - I think one of the hardest thing is difficulty consoling our kids like you described. But my boys are amazing and I love their unique perspective and resiliant spirits :).

Christine said...

I have two kids with autism too, they are not quite three years old and not quite 5 years old. I know just what you mean. I have no idea what it's really like to have kids who don't have autism. I was at a taco place the other day getting take out and there was this family that came in with two sets of twins, 2yr olds and 4 yr olds. They all sat nicely and quietly with their mother while their father got food. I couldn't believe it. I was shocked, discouraged, and frankly jealous. That little picture will NEVER be a reality in my world and I am so used to my world that until I saw it it would never even have seemed possible. It's hard to answer the question of 'how has autism changed your life' b/c we can't relate to how 'typical' life is. I just wanna tell people, follow me around with a camera for a day, a week... and stop asking me stupid questions, I don't have time for it! :-)