Information for parents of disabled children

Sunday, August 23, 2009

Healthcare for Dummies

I'm watching the debate with a skeptical eye. Skeptical doesn't quite cover it. Cynical? Disbelieving? Disillusioned? All of them are very good words for what I'm feeling.

You see, our place in the system as a family with an autistic child is pretty much written in stone. I've seen nothing that makes me think we suddenly have a place in the hearts and minds of others in our society. Mainly, this cynicism is because over the years I've heard it all.

When our family was on medicaid, we were "suckling at the government teat". That one amused me. When we got desperate and one of us volunteered to go to Iraq with his reserve unit, I was told once, "that others shouldn't have to subsidize my son's disorder", when discussing education and whether my son deserves one. This, in spite of our sacrifices, seems to be all I hear now. The Tri-care is gone, and life returns to the financial and medical chaos we lived in before this. What will we be now? A burden? A menace? Unfortunate?

This is why I only support a public option, though a true system of government health care would be better. None of this should be debatable, and, in other countries, I don't hear the same kind of debate taking place about whether diseases and disorders should opt you out of society. Autism is expensive in those places too, but the question of what makes a citizen valuable doesn't seem to be bandied about at every town hall. The emphasis is most often on prevention and helping people live productive lives and not on their monetary value as a person. When I go before school boards and superintendents and committees, I even find myself emphasizing the fiscal crisis of Autism and my son's future life multiplied by millions, just so I can make them care, make them act in their own interest if not his.

Is that all we've come to? A dollar amount? Because of his disorders, my son's health care is rationed right this minute. He can't get coverage even if we can afford the ridiculous premiums. His value is zero, according to the ones who get to decide. Insurance companies.

Mankind has indeed done terrible things to the weakest of us over the centuries which makes the argument of "death panels" seem possible, if far-fetched. I submit that this happens regardless of who has that authority because we fear disorder and those who have them. They are uncomfortable reminders that we have weaknesses.

We're afraid of it. Recently, citizens in Indy came out against an assisted living home for kids like mine citing NIMBY- not in my back yard. School districts cut services at every opportunity for children with IEPs in this state. Insurance companies refuse anyone with seizures in their history. It's all discrimination, and it's what we're really fighting about.

We need to stop arguing about value and cost and decide what we really believe. Is there a point where we lose value? God, I hope not because we will all be old one day. Is there a concrete way to determine value? Value is subjective. My son means everything to me and nothing to someone in Washington D.C. or Houston or San Diego. Our society has to make up its mind. What do we believe? How far will we take that belief?

I'm about to make some controversial statements. Prepare yourself. First, one can NEVER be pro-life and anti-health care. It's contradictory because a "person's a person, no matter how small" cannot apply only to the newborn fetus and must also be applied to the homeless man on the corner or the emotionally disturbed child in the classroom. If it's not applied to everyone, then we've made a person have numerical value. Second, "death panels" are nothing to fear in a society that will condemn them and resist them, as I believe this one would. Children diagnosed with disability are no longer institutionalized as the first resort and forgotten. We did that, and I have every confidence we can make the same kind of changes with special education and health care as long as we find the will. Finally, everyone out there marching against health care reform is assigning that value to someone else. I'm sorry, but that's how I feel. It's not about shutting you up. It's about disagreeing with the arguments when we have so many who need our energy put into helping them, not devaluing them.

Put down the signs and start hitting the books. Because we're all headed for trouble if neurological disorders aren't checked. There's been a GLOBAL increase in epilepsy, did you know that? Did you also know that we don't really know what causes it and it can be developed at any stage of life for no apparent reason or from all kinds of apparent reasons no one really understands? Did you know one bad seizure could make any of us disabled in a heartbeat? Now, be afraid. Be very afraid, and start working on solutions, people. We're burning daylight.
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Thursday, August 20, 2009

Data Collection for Parents

Yellow Round Ring BinderImage via Wikipedia

Each child has data. . . somewhere. The question parents must ask is can you find it. I have a system for compiling data that works even for the most unorganized woman on the planet, myself.

You'll need:
At least three sturdy binders and page protectors.

Binder 1:
IEPs: Design this binder to come with you to each case conference. Make a place for notes and questions. Keep copies of your most recent IEP there as well as all your child's current school year data; grades, progress reports, testing and evaluations.

Binder 2:
Progress- This is my catch-all binder. If I think it's data or could be data to present or analyze at any point, I keep it here. Progress reports move to this folder once I have a completed IEP for the year.

Binder 3:
Transition- We're all working toward the future, and that's what goes here. Anything pertaining to your child's graceful transition into the world. At the age of 22 in Indiana, at the latest, all children leave school. You need to sit down and ask the tough questions ASAP.
  • Will he live with me?
  • Will she be able to work at all?
  • Will he need waiver support?
  • Do we need Power of Attorney?
These aren't simple questions with easy answers, and some can't be answered yet. But it's best to begin to think about this now. Even if all you do is make a binder for things you can't look at yet, you're thinking about the future and adjusting your dreams continually to your child's progress. That's important.
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Monday, August 17, 2009

Wednesday, August 12, 2009

Special Education SchoolImage by kvitlauk via Flickr

Indiana is special when it comes to special education. It has a dream. That dream comes in the form of a law, but it's far from being a reality. Article Seven dictates to schools how disability should be handled in the state. Placement should be appropriate and definitions of what is or is not appropriate run us aground each and every day.

My experience of case conference committees has been both sad and typical. It's a battlefield whether it should be or not, whether that's right or not. It's parent against school, and the things you don't know are the hardest to overcome. Funding, politics and even individual egos, theirs and yours, must be navigated like a mine field.

So I treat Article 7 like a beautiful dream that must be realized and, even tweaked, now and again. The bottom line is that these aren't rights until you no longer have to ask for them. Maybe I'd be more patient if I was asking for my own, but it's Darrel I worry about, the time he's losing, the things that need to happen before too long. Not a cure, but a life lived with minimal assistance would be nice. Speech might be good, but I'll settle for coping skills, his and mine. This leads to all the conflict with schools I can handle because some things are just right.

Where do schools fit in all this? If we're the dreamers, are they the dream? Article 7 is all about education, and therefore depends on teachers, administrators and even local government to become reality. That's the rub. Parents and students depend on them, so they need them to be dependable.

My frustration probably comes from that, but also from the dealings I have every day with people I perceive as my son's best hope for functionality, and I forget that they may not see it that way. They may see it as a job, maybe one they love. But they go home to an autism free zone perhaps, and turn on the TV or help their kids with their math homework. Meanwhile, I'm at home trying to interpret a screaming fit or medicating someone. Sometimes I'm dodging teeth or fists because that's where we are that moment. Those professionals don't often live where we live. Living with severe disability isn't something you can turn off, so we're always in crisis mode.

Learn patience is the lesson for the day. While everything may seem immediate to us, it's really not immediate for everyone else. Get up each morning and move firmly forward with purpose, but don't run over anyone. "Here endeth the lesson."
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Tuesday, August 11, 2009

School's In

Rise of the LeavesImage by egazelle via Flickr

It didn't feel like Fall today, but the buses rolled by and the kids put on their backpacks. And for me, that means back to the grinding stone on special education.

It's the first day back, and already I'm tired. I'm tired of fighting for something that shouldn't be a fight. Special Education is in everyone's best interest, not only the child's, but it's always with the cost-cutting and the bickering and the putting off.

Last month, it was stimulus funding being withheld. Today, we cut bus monitors. There is an institutional culture in education, and it doesn't work for my kid for the most part.

There are a million things I could say on the subject, unfortunately I'm just too tired, and we have to do this some more tomorrow. Insert sigh here.
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Tuesday, August 4, 2009

One of those moments

BJD's shoesImage by MiriamBJDolls via Flickr

Yesterday, I screamed! It was one of those moments we have where our whole family goes nuts over something Darrel did. And all the other people we tell about it say, "Oookay".

We needed to move out, and Wendy couldn't find a shoe. I wish this was a rare occasion, but it wasn't. Meanwhile, D has been listening in to everyone running around like crazy people looking for a lost shoe, and he's doing the math. He finds the shoe, takes it to Wendy who's five, and puts it on her like she's Cinderella. Problem solved!

It's not a big thing in the scheme of things, but, for us, it was interaction, genuine, God-bless-it interaction. Darrel not only took an interest in events around him, but solved the problem all on his own. We're used to a different type of interaction that is very Darrel-centered. Typically, D worries about the things that bother him. Of course, it's possible that the crazy people were getting on his nerves, and the behavior was all about him. I intend to be optimistic. It's so seldom that we get to look on the bright side that I'm grabbing on with both hands.

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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

Check out this YouTube Channel!

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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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