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Kim Stagliano

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The Crappy Life of the Autism Mom

Posted: 01/03/07 05:05 PM ET

Well, that title should set off alarm bells in the Neurodiverse (ND) autism world.

Autism is like a box of Bertie Bott's Every Flavor Beans (from the Harry Potter books.) Some autistics got the raspberry cream or root beer flavor. They can speak eloquently, write blogs, move out on their own, marry, have children and manage their autistic traits. Others with autism, like my three girls, got the ear wax/vomit/dog poop flavor. They need help 24/7 to navigate the world. When I talk about autism, I mean the version that my three girls got. I'm not talking about the sort of autism that encompasses quirky kids with some social deficits who are otherwise brilliant.

The ND community tells me and tens of thousands of other parents that we are disrespecting our kids by trying to help them. The ND blogs berate us as wanting to change our kids because we don't accept them. Here's a "taste" of what autism looks like in the Stagliano household. Would you want something better for your kids?

Twice last month, we had a "crapisode." What is a crapisode? (This is where you might want to stop eating and put down your beverage.) My 10 year old (#2, appropriately for the purposes of this entry) pooped in the toilet. That is reason to cheer, believe me. Toilet training is a major issue in my section of the autism community. Our kids can wear diapers into their teens and beyond. So Miss G pooped. Hooray! But Miss G forgets to flush. And she rarely closes the lid. Not hooray.

Miss Peanut, my 6 year old, seems to believe that being a Virgo means she simply MUST swim in any puddle larger than spit. The toilet is like an Olympic sized pool to her. So Peanut goes into the toilet after Miss G has had her, ah, success. Peanut flings kaka everywhere and gets it all over herself, the floor, the walls, the tub, the baseboards and the window. Wes Craven could not film anything scarier than what I saw that school morning, 35 minutes before the bus was due to arrive. That's a "crapisode." It happens in the blink of an eye while I'm washing dishes or doing laundry. I'm alerted by a splashing sound that drops a brick into my stomach. Miss G doesn't understand to flush and close the lid. Miss Peanut doesn't realize that a face full of feces is rarely considered a way to amuse oneself outside of the fetish community.

I will never stop trying to help my girls recover from their autism. I can not tell you what recovery means. It varies by kid and according to God's grace. If recovery means only that Peanut understands she should sit on the toilet, not play in the toilet, I'll take it.

Recovering your kids doesn't mean denying their value as people. To the contrary, it means we are willing to devote our lives, our savings, our sanity to their improved health, development and well being.

Maybe we need an expanded vocabulary. The ND's can keep the word autism and my kids get a new label. Fine by me. Just don't tell me to give up on my girls and accept their version of autism (remember the Bertie Bott's beans) as simply a different type of personality. Because THAT'S a load of crap.

 

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