The Crappy Life of the Autism Mom - neurodiverse

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The Crappy Life of the Autism Mom

By Kim Stagliano on the Huffington Post web blog.

http://tinyurl.com/ykdzxx

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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