Information for parents of disabled children

Tuesday, April 24, 2012

It's just not personal.

Autism Family Camp Weekend 2009
Autism Family Camp Weekend 2009 (Photo credit: Camp ASCCA)
Children with autism have meltdowns. We say it. We acknowledge it routinely, as it is repeated like a mantra by parents trying to prepare professionals for the moment their child goes ballistic. Every parent knows there will be a moment when our lovable, sweet comedian isn't so funny.

There will be screaming, hitting, kicking, and other unwelcome social behaviors. What's surprising is not how many people don't understand the autistic meltdown, but how many professionals don't fully understand until the day arrives.

The severity of the autism can define how bad it gets, and it can get bad. If you're working with any disabled student, there are some things you need to know.

  • It's not personal. You're just there. They didn't hit you because they hate you. Something is getting to them, and, just like when dealing with Alzheimer's patients, this is a good time to pause, back off or get out of the way. 
  • They can't stop it. Only you can prevent autism meltdowns (except when you can't)!  Know what is pushing them too far. Get to know the triggers, and don't blame them for things they can't control. 
  • Safety first.  Worry about causes later, but at the height of the meltdown your focus has to be on the student and keeping everyone safe. Deal with the behavior before you discuss causes. The worst thing you can do is have that discussion in front of the student while he's already wound up. 

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Monday, April 23, 2012

Guest Blogger: Jeff Stimpson

Jeff Stimpson
Twitter: @Jeffslife
Books: Alex: The Fathering of a Preemie and 
Alex the Boy: Episodes From A Family's Life With Autism


Jobs to Do
They're talking jobs in Alex's future, as he nears 14 and "vocational" begins to appear on his IEP. They're talking "jobs" in 14 million other futures right now of course, but as Alex gets closer to adulthood I try to not think about that.
There are various jobs Alex can do. Even now in the grocery store, he aligns cans so the labels face the same way. At grandpa's lake house, he sets the table for a dozen with the handles of the coffee cups all facing the same way. There are other examples.
Jobs he does:
Alex empties the dishwasher every morning before the sun is up (his schoolbus comes at 6, and he's often up by 4:30 anyway). "Knives, forks and spoons, Alex," I say over the lower bin, which I've pulled out after he's made sure to close the soap box. One by one he drops the utensils clattering into their slots in the drawer. Except for the paper-thin tablespoons Jill paid 25-cent each for, of course; Alex hates those, and morning after morning he tries to slide them unnoticed into the rear end of the drawer.
He does laundry, hauling the heavy cart to the elevator and punching B for basement. I still keep an eye on him down there, as it wasn't long ago that he darted for the door and even locked himself in the bathroom. These days, he scoops the fallen socks and underwear from the floor and stuffs them into the triple-loaders. When the laundry's done, he wrestles the tangles from the washer. Once, when all the triples were taken and we had to use the double front-loaders, Alex stared at the triples then looked for a moment at the doubles. He wanted to understand but the doubles were new to him. He wanted to understand - and I ached as I sure hoped Alex didn't realize that other people understand the difference between the doubles and the triples much, much faster than he can.
Jobs he creates:
Sweeping pretzel and cookie crumbs from the cushion of the couch, the floor of the living room, and Ned's bed, where Alex perches - never on his own bed - to munch and watch the iPad. "Alex put crumbs in my bed!" says Ned, his arms arcing madly across the sheets. When I was a little kid, I could never sleep when I thought there were crumbs in my bed, either. Thanks, Alex!I don't like to think about them roaches.
Alex up in the middle of the night and first thing in the morning also means I have to wipe piss from around the toilet bowl. Enough of that, for now. He scatters clothes when he's picking out what he's going to wear that day, socks and pants and T shirts littered around the foot of his dresser like Civil War dead in the Brady photograph around the walls of a fort. Alex scatters Legos and makes Ned cry and then swear. Thanks, Alex!
We learn more about Alex and jobs when we visit his classroom. We learn he orders the supplies for his classroom and delivers newspapers to all the classrooms in his school.
We learn too that he sweeps floors and wipes tables in his classroom. Funny he never mentioned that to us.

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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Wednesday, February 29, 2012

What a Difference a Move Makes?

So, it's been a while. . .

Since last we talked, I've experienced multiple life changes, but the strangest one was to leave Indianapolis for , literal, greener pastures. We have returned to small, town USA in Missouri.

 First thing I noticed?

Special education here is run from the state. Now, I'm not saying it goes fast; but, already, I see a change in quality of service. Placement decisions must be justified in writing. They are made at the state DOE. Placement is by the numbers. Sure, that could become negative in a borderline situation, where you have a child who seems very abled needing more supports or a parent who really wants inclusion education with a more severe child. I can't be sure what that will look like over time, but the system I see is as well regulated as any I've ever seen.

Other thing I've noticed?

I haven't seen a single Bill or Tim here. Not one. Oh, the bliss.

There are no overpaid, power hungry directors of special education in my life at all! Just one nice lady who fills out applications and helps us work with the state and write an IEP. One nice lady. My heart just skipped a beat.

Do you know what a relief that is? Our lives, literally, felt embattled and under seige. We felt disenfranchised and disconnected from society by our son's disability. Now, I feel like all the other moms. I don't have to march on a school board or storm the state house. I can focus on what my kids need and what I want to do with myself.

The best advice I can give to parents in Indiana is