Information for parents of disabled children

Friday, March 30, 2012

Resources for the "one of" special needs student

Mississippi | MissouriMississippi | Missouri (Photo credit: Kevin Saff)Moving to a small town was disconcerting, but finding out there were no children like D was even more so. No autistic students were enrolled at his level of cognitive difficulty.

 Indy is a veritable melting pot of disabilities and disorders, and every resource you could think of is represented somehow by their number. It made information easy to come by when you search. Here, even people are hard to find, and they are typically my favorite resources. People always seem to know something outside the manuals and tend to supply anecdotal guidance.

The first step after relocation is to find your local advocacy agency.
MPACT is the local equivalent to INsource back home in Indiana.
Here is where you find your most important resource, the law.

Determining placement here is a bit slow, so far. Children like D (severely disabled) must apply to the schools that are appropriate in the area in a fairly involved process with much testing and much discussion. We're waiting to hear now.

Rural areas are, understandably, lacking in my favorite resource; people. Take your support where you can find it. Schools and online resources are the best bet in a farm community.

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Thursday, March 29, 2012

My one in eighty-eight.

Light It Up BlueLight It Up Blue (Photo credit: Wikipedia)Everyone has by now heard about the CDC's revision of autism rates this week. You'd have to live under a rock to miss it. Sometimes people need to see the numbers, I get that, but just as often we lose the perspective in the big picture.

D is my one in eighty-eight. He certainly isn't the only one that counts to me, but he's the one , about whom, I am an expert. Much like those number crunchers up at the CDC. I have a specialty in the big picture. It's the big picture of one little man.

Widen that lens to include eighty-eight others, then hundreds and thousands, just like him, and my heart stops for a second. This number is up from 1 in 110. Think of the impact of that increase, even if it can be explained by detection. One in every eighty-eight who needs neurology, special education, dental care, accommodations and modifications, and more medical care than I can even name. It's mind boggling.

There is not just personal devastation with every autism diagnosis, but there is a social and economic devastation, as well. Autism has to become a priority, not just for the parents of the diagnosed or the lobby, but for society at large. Denial can't be laughed off any longer, nor can indifference continue unchecked. With rates rising at this pace, one thing is certain; whoever you are and whatever you do, it's only a matter of time.
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Saturday, March 10, 2012

Autism and the single mother, or what the hell was I thinking?

Meeting Tigger at the Dark ride The Many Adven...Image via WikipediaAutism makes things mixed up and not make sense, except in the most literal or basic way. Moving away from our friends, leaving our home, and moving on from the family we've all known wasn't ever going to be easy. It's also not like I have a choice. I just didn't expect it to be this hard.

Still, as I wrestled my child in a strange Wal-mart yesterday, I realized what we'd left behind, namely, a community that already knew my child. When D had a public meltdown in Indy, people knew us, and I could even tell you that they just ignored it for the most part, in some situations. Plus, the big towns just have more autism.

Not so here in Podunk, Missouri. The backwater towns are getting a culture immersion from our family. Autism just moved to town, and I do mean that literally. We're the only ones. Like Tigger, but less fun. I have to break in a whole new life and manage my son's fragile happiness.

The divorce statistics for couples with autistic children have always blown me away, and I can't say I wasn't warned. 85% of couples seek a divorce, and growing evidence suggests the ones who stay together may be thinking economically. With this growing number of single mothers (and Dads) managing autism, how are people missing this? How are there still places where people don't know how hard autism can be? Autism awareness has a long way to go.

God knows, we're doing our part. Look out, Podunk. You ain't seen nothing yet.
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