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.