Information for parents of disabled children
Showing posts with label Mental Health. Show all posts
Showing posts with label Mental Health. Show all posts

Wednesday, October 13, 2010

Medical systems, education and juvenile courts; filling the doughnut hole

school friendsImage by woodleywonderworks via Flickr
A common occurance in Indianapolis, perhaps around the country, for special needs kids is slipping through the cracks. Usually when we hear that phrase, we think of kids in schools getting failed forward, moved on to the next grade without the performance to back it up. However, there is a much bigger crack in the pathway special needs kids are walking these days, and it begins with behavior.
As any parent can attest, behavior is a challenging aspect of developmental disorder. Quirky, jerky movements are the commonplace assumption for those outside the circle of a family dealing with disability, but this is the mildest kind of behavior. Aggressive behaviors happen in households all the time; hitting, pinching, biting, kicking. These behaviors can start a kid climbing the ladder of more and more restrictive educational environments. What happens when the ladder ends?
Professionals call it the doughnut hole. Just like Alice, a kid can disappear in that hole.
Let's Suppose . . .
A kid has severely aggressive behaviors. He's moved from general education to a special education inclusion classroom. He can't make it there, so he's off to a separate facility like RISE Learning Center or Damar, a live-in facility on the southwest side. He eventually lands in a six week program to work on his behaviors and tweak the medication. Medicaid or Insurance pays for it because a doctor sent him.
This child returns to the classroom after some improvement where he gets into a fight, and there have been a lot of fights because he has an emotional disability. Here's the trap; remember that medicaid or insurance already paid for a six week program that didn't work, so the school is left to make the call. However, if they do, the school district pays. This makes schools hesitate to make the call.
What will inevitably happen is a round of suspensions and placement changes while parents and teachers alike pull their hair out by the roots. This will go on until someone pulls the plug. That someone is usually a juvenile court judge. The child will then be placed in an extended treatment program using department of correction funds.
What's the solution?
Easy answers are hard to come by. Our medical system could change the way they do business and pay for unlimited hospitalizations, but that isn't likely, nor is it guaranteed to work. Our juvenile justice system actually has no choice by the time they are involved. Some action is required. That leaves the school, and funding just doesn't grow on trees.
We have to find the solutions and methods that work if we hope to close the doughnut hole. General education inclusion has to become far more successful than it generally is by utilizing peer training and behavior interventions that work in practice, not just in theory. Schools systems will have to become more aggressive in their inclusion programming, perhaps even better staffed.
Schools will have to recognize the importance of social training, especially for children on the autism spectrum. Right now, in Indiana schools the typical IEP reads that social skills training happens twice a week for fifteen minutes. It's important to realize that social skills training can happen all through the day wherever the opportunity presents itself, and educators have to take those opportunities.
It is inevitable that tax dollars will be spent on the children who slip through the cracks, but schools can intervene early in a child's education to stop that spiral into the justice system through comprehensive intervention. Until society finds a cure for every developmental and neurological disorder, there has to be a plan. Education is the best shot at early identification of need and delivery of service. The money Americans save by early investment in special education is unlimited. Diagnosis isn't a get-out-of-jail-free card, and adults with disabilities who commit crimes or pose a danger to others will be housed somewhere in our system. Educational intervention may be the only chance they have to avoid the revolving door of the justice system.
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Thursday, May 6, 2010

Sigh.

It's a blessing....and a curse....100 yearsImage by Coal and Ice via Flickr
For some time now, I've dialed back my resistance of our school's administration. I've rooted for the inter-local and wished for its success. That inter-local isn't even here yet, and the disappointment seems inevitable. A wise woman once said to me in a training that your child's education doesn't have to be a Lexus, but the state has to give you a Ford at least. Well, Darrel is kicking the tires on a jalopy and wondering where it all went wrong.


There were big plans for ABA training. It never happened. Neither did TEAACH or anything else for that matter. We got a parent on the Autism Team for the township, and I was so excited. Oh, what we could do! Nothing. That's what we could do. Nothing happened.

 We have so much technology, so many programs, and so much we could use to make our kids functional. It wasn't a matter of cost. I know that will be the excuse given, but it's just that, an excuse. Implementing policy in the classroom usually doesn't cost a dime. The price is will-power. Orientation training for teacher's assistants who do the lion's share of the work, that takes time, but it's worth it. Autism training which is mandated isn't even happening consistently.  What does it all come down to? I have an answer, but it's not PC.

How the heck will we include the most severe students if we don't even give them comprehensive tools like sign language, PECS and behavioral training? The answer: we'll pretend we did. We put them out in a self-contained classroom or a general education setting and pray for divine intervention. One day, we'll be right back in that CCC discussing suspensions and change of placement. It's not good enough. Sorry, Indiana, but you are flunking out in special education.

Then to hear things from so many professionals and even advocates like "it's happening everywhere!" as if that excuses our failure to make it stop happening. Again and again, I've seen what true intervention can do for a child. I'm sick of being told it takes money! No, it really doesn't. It takes effort! If I can do it at home, you can do it at school for free.


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Saturday, April 10, 2010

My One and ONLY Reply

This picture was reworked by the Fotowerkstatt...Image via Wikipedia

 Hitler didn't do it, Autism did!:
The things we'll say online and how none of themwill find a cure.




The internet is a wonderful thing. Ten seconds of pushing buttons and the whole world is connected. Lately, I've looked up a few things, maybe out of morbid curiosity, on the argument to vaccinate or not to vaccinate. OMG! In internet speak, that means "What was I thinking?"

There are camps on both side of the river, and the battles rage fiercely on. There's Generation Rescue and Age of Autism, and there are skeptics found on sites like Scienceblog. There's Jenny McCarthy beating the drum, and there is the NIH and CDC waving the flag. In between, you have serious vitriol and hyperbole. Oh, Sweet Lord, the hyperbole!

On the above mentioned Science blog, I stopped to share our story. Don't ask me why. Temporarily out of my mind, I assume. Much later, I followed a link back and found the replies. For several posts, it appeared to have degenerated into actual conversation instead of the acidic shouting of words like "strawman", "Hitler" and "Babykillers". Having come to my senses,  I've decided something. Nothing about any of this really matters, and I wanted to post my response here because some of what I said bears repeating often for both camps in this little forum war to nowhere.
I actually hadn't checked on this site in some time. There isn't enough time in the day to "lurk" on a forum. My mind reels.
" Why are the trials, tribulations and questions from those of us who had our children injured by the actual diseases more trivial than those who claimed it came from the vaccine?
What makes having the disease and suffering very real consequences not as dire as yours?"
Holy crap! When did I even suggest such a thing? That is an assumption drawn from your emotional state. This is what I mean. Having reviewed this entire thread, there is no value in any of this, and those of you having petty discussion on Dachau and Hitler and whether Jenny McCarthy is a slut or D-list actress, whichever side of the argument you rally to Vac or Non-vac, are wasting time and energy. This is a personal decision made within a family.
In free societies, it should stay that way. Removing mercury from vaccines was easy. It's done for the most part. What did it hurt? Removing Pthalates and other such chemicals? What could it hurt? Are they necessary in the product? Usually not. Does any of this matter? Not a bit. It may help and it may not. Like recycling, should we do it? Again, probably.
My family, like many others, still gets up in the morning struggling with our personal choices and circumstances. Nothing said here changes any of that. Remove morality and emotion from the equation for a second, all of you. Is there a problem and is it growing?
My suspicion is that we have a genetic propensity meeting modern day diet, chemicals, etc. Does that change my son's life? Not one bit. What changes his life? Hard work, education and repetition of tasks, research (lots of it), and keeping things as simple as possible. Our bottom line is that parents have the right to parent their children and decide their medical care. Period.
We can spread balanced information. That helps. We can educate parents on the issues facing their child now. That helps. We can work to fund research into every aspect of autism and developmental disorder. That helps. But the stuff above, that doesn't help. It only hurts the hurting and frustrates the already frustrated. I'm speaking to all of you. Age of Autism included. Put your energies into the things that help, and put comments and ugliness like all this in the garbage where it truly belongs.
My experience is that there is a middle ground between name calling and silence. It's called discourse. As a society, we should all take a look at the mark we leave on the world. When we want to solve the problem, it will get solved. In the meantime, let's stop alienating everyone around us. To Quote last night's episode of Stargate Universe, Divided, "Remember, we have to live with these people tomorrow".  This is my one and only reply. Acting like children won't help our children.
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Sunday, August 2, 2009

Aspie's Online

Who knew there were autistics out there who love autism? It's really amazing. YouTube's The Wrong Planet is actually a study in what's wrong with autism and defines it as a disorder.

Kids with autism can't always get social cues and have difficulty empathizing. Since the broadcaster of The Wrong Planet is fine with his disorder, he doesn't understand why my son might not like his. The point is that Aspberger's/high-functioning autism is not the end of the spectrum that will destroy a child's life. On our end of the spectrum, computer broadcasting seems like a pipe dream.

My point is not to belittle the contribution of this child to the world at large. He has great talent and ability but little human understanding. That's another symptom, not a reason to rejoice. Egocentricity and autism go hand in hand.

Darrel has many strengths. Autism isn't one of them. Unlike some parents, I am not waiting for a cure, but you won't see me going to Autism the Musical anytime soon either. My son isn't NON-neuro-typical. His brain is physically hindered, and I wish to God it hadn't been because he deserved much, much more happiness in life.

Instead of marriage and children, he will grow old with me and his father. We will all work tirelessly to get rid of autism because the only thing that's changed over the last twenty years about our world is the environment. We are doing this to ourselves, and that is my heartfelt belief. There are changes to be made, and complacency isn't an option. Thank God for Autism Speaks and others like them.


Saturday, August 1, 2009

A Special Ed Blog With Soul


He's my reason. Waking up each day may be hard, but somebody needs me to wake up and go on. Darrel is on the autism spectrum, on the severe end. He cannot talk. He can't sit still, just runs and spins things. D loves to spin things. He isn't my only child, but he's my permanent child. So I wake up even when I've only had two hours of sleep the night before.

This blog will, hopefully, fulfill a need we have seen so many times over the years to educate others on what it is to be on this spectrum. High-functioning autism isn't what D has, and yet so many assume that is what autism is when, in fact, the majority of children on the spectrum cannot be classified as high-functioning. In other words, Rain Man is not the norm.

Our experience with autism has not been a musical. It's been a nightmare; the nightmare of watching our child suffer through symptoms we couldn't change or fix. Every child with autism is in some way or other, slightly or severely, uncomfortable in their own skin. Every day is teaching D how to cope with the way things are because they aren't going to be different tomorrow.

For the sake of every child on the spectrum, spend 15 minutes with us each day, or even each week. This disorder is spreading rapidly. 1 in 150 children are diagnosed with autism.

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