Information for parents of disabled children

Thursday, December 31, 2009

New Year, New I.E.P.

Autism Awareness Ribbon, Colorful Puzzle Piece...Image by Beverly & Pack via Flickr
Case conference time again. Must be January. This time I'm devoting my post to my understanding of one aspect of the conference. You're all together again, catching up on old times and reminiscing about IEPs past. Oh, wait that was in my dream.

In reality, staff changes and gets busy, so a CCC can be a cold, impersonal place. I think it's helpful for parents to remember that. Everyone at that table has the best of intentions, most of the time, but you're the only one who doesn't get paid to do it, Mom and Dad.

So here's what we need to do. We need to be up on procedure. This is a legal contract we're writing, and we want it right.  There is a resource online that can help. IdealIndiana
The law alone is the discussion, but it's complete, if dry.

I like to tell parents to learn the Istart 7 system and just follow the dotted lines. Each point in there should be discussed with no skips. It's so common to rush over one section or another. Extended school year in particular gets jumped quite a bit. If that starts to occur, parents can just politely stop everything and go back to discuss it. We have that ability. Don't move on, until you've determined something even if it's that you can't determine anything at this time.

Information on ESY is confused even among professional sources. Here's the best explanations from IPAS:

If your child needs services beyond the regular school year in order to make reasonable progress, the school system must provide these services.
Extended school year services are special education and related services that
  • are provided to a student with a disability.
  • beyond the public agency's school calendar or instructional day;
  • in accordance with the student's IEP;
  • at no cost to the parent of the student; 
  • and meet the standards of the Department of Education.
Each public agency must:
  • ensure that extended school year services are available as necessary to provide free appropriate public education;
  • provide extended school year services only if a student's CCC determines, on an individual basis, that the services are necessary for the provision of free appropriate public education for student;
  • may no limit extended school year services to particular categories of disability, or unilaterally limit the type, amount, or duration of those services.
The decision about ESY services must be made at your child's annual IEP review meeting, IEP Amendment, subsequent CCC meeting, or at a meeting in time for you to challenge a decision not to provide services so that the issue can be resolved before the summer. ESY must be individualized to meet your child's needs, and must be provided in the least restrictive environment.
Remember: ESY services are not just an extension of time in school, they are not automatic, and they are not enrichment programs. ESY services are individualized services designed to give your child the ability to meet certain objectives in his or her IEP that cannot be achieved without education time beyond the regular school day.
Training is essential for a parent. You can get training at among others, however Insource is free. Start preparing for your IEP in advance, get your documentation in order and know you have the power to advocate for your child. Use procedures in place to guarantee your IEP conference is as painless as possible. Things can get heated at times, so just stick to the procedures and talk it all out. This is too important to rush.

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Monday, December 21, 2009

Merry Christmas, Mr. President.

American Christmas TreeImage via Wikipedia
Sitting here in my living room tonight, I watched the news of passage of historic healthcare legislation with a heavy heart. My son who has autism slept on the other end of the couch because today had been a bad day. How will we do this now? I thought.

You see, if we could, we'd have insurance now. The experience of Tricare was the "good old days", if you ignore the damage done by sending a father and husband off to war in order to get good insurance. Insurance companies deny us or price us out of coverage. Even reserve coverage was too high to manage with unemployment looming, so now we've gone without.

A mandate to buy insurance, I thought, looking at that obscenely bright Christmas tree in my tiny living room. If I had anything of value now, I'd sell it to get insurance, so Darrel could go back to speech therapy. If I had options, I'd go hungry to get him occupational therapy, just like I choose between good food and perscription refills now. Now, that we're to be mandated to pay the rates demanded for insurance. How will we go on? I just can't see it.

And there sits that damned Christmas tree. Oh, the things it took to make Christmas happen this year! Barely making layaway payments with my heart in my toes. Family pitching in to help with the big things. Keeping the big things to a minimum. Then this news. It's just an early present, sir.

It's not that I don't get it. Some will be helped by this plan, I'm sure. Somebody will get dental care that wouldn't have, but why do I have the suspicion that it's not my sons and daughter? Why do I have this sinking feeling that all this reform means to us is yet another bill we can't pay? All because some insurance company had the pull that the people lack, we're looking at another long year and wondering if this is the one we don't get through.

Then Leiberman says you never pressured him for a public option. That broke my hope, Sir.  A few weeks ago, I toughed out a kidney stone at home and remembered my father doing the same. He was always insured, by the way. He wanted to save the money, if he could, but our family didn't even have it. I missed work at a part-time job we couldn't afford to miss and endured pain you couldn't imagine. Do you know how many of our friends are doing the same? People who, in my father's day, would have been considered to be doing okay are reduced to home remedies and hope.

There's something fundamentally wrong with this country if nothing above this paragraph matters. It matters that someone tried to change things, I suppose. Merry Christmas!
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Saturday, December 19, 2009

Friday, December 18, 2009

Extended School Year Services

It's a touchy subject, ESY. Still, parents and teachers and administrators are supposed to sit down once a year and discuss it. Really discuss it. Not dismiss it off-hand and sweep the subject under the carpet. Istart 7 makes that more likely, but we still have a long way to go.

When does a kid need extended school year? When they will not retain over long breaks the information or skills they got in the school year. When they get "stuck" at break time with a burgeoning skill that should be cultivated. When students have "special considerations" like a degenerative condition or seizure disorder. Unfortunately, I encounter lots of educators who think of ESY as some kind of hand out and not the useful, invaluable service that it is.  Don't ask me why. I don't get it.

Parents can advocate for their children with data. Make sure you collect as much data on your child as possible.  A trend of regression can usually be spotted in the patterns found in constant record keeping. It's imperative that you collect your own and insist on collection at school. Another important note to remember is that there should ALWAYS be a discussion, a serious, lengthy discussion, on every individual child's needs. This is covered in the guidelines for ESY provided by the state of Indiana.

Case conference committees are supposed to be a collaborative effort. That requires more work than typically observed. Teachers get in a hurry because they are genuinely swamped with work. Parents don't always know what should be discussed and how much is left out on any particular subject. The guidelines (based on case law by the way) are extremely important.  When we follow the law and the data, it removes the emotion of the decision. By analyzing our evidence, schools and parents can leave their own baggage at the door and truly focus only on the child, not the cost or fear of failure or anything else.
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Thursday, December 10, 2009

A Club is Born!

Lego GroupImage via Wikipedia
RISE Learning Center will have LEGO therapy, or at least a club! The LEGOs are due in January, and today I sold the idea of trying to get colleges involved as facilitators. It's only a matter of time now.

We did it last year, but it was a disorganized, understaffed mess. The kids loved it. There's something about being with people who get you. In my opinion, it's a piece that's being lost in educating our autistic children.

For them, it was like walking into Cheers. Everybody knew their names, and everyone in that room knew autism. Sometimes, we forget how hard it is to be different. Special needs kids have that issue without ceasing. How great is it that this club can be good for them too?

I got the study from a teacher, and it blew my mind. LEGO therapy worked better than a commonly used social skills program. The results are preliminary, but it's looking good for LEGOs.  Extra-curricular activities are so hard to find for special needs students that I'd have done it for that alone, but when you add the bottom line, I'm sold.
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Legos: building blocks in autism therapy

Legos: building blocks in autism therapy

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Friday, December 4, 2009

Vaccines and The Crisis of Faith

Brunswick Church (Presbyterian), known locally...Image via Wikipedia

The blog quoted below Age of Autism contains some objectionable content akin to hate speech. I do feel however that the information quoted by them here has validity and can be looked at objectively by a reader.

AUTISM AND VACCINES AROUND THE WORLD: Vaccine Schedules, Autism Rates, and Under 5 Mortality View the entire study HERE. Generation Rescue, Inc. April 2009 The United States has the highest number of mandated vaccines for children under 5 in the world (36, double the Western world average of 18), the highest autism rate in the world (1 in 150 children, 10 times or more the rate of some other Western countries), but only places 34th in the world for its children under 5 mortality rate. What's going on?


Our family took a pass on H1N1 this year. It wasn't entirely paranoia that drove our decision, though I admit to being a vaccine skeptic who investigates each shot like I'm interviewing childcare providers. I work in the school my son attends and knew we'd probably already been exposed, so the urgency wasn't there. I was right by the way.  I'm not anti-vaccine, but every parent should do a risk assessment. Will the potential benefit to my child outweigh the risk?

However, from pregnancy, I've wondered at the logic involved in mercury use. I remember getting the pamphlet to avoid fish because of mercury content and thinking, "But it's okay to put in shots?" When I found out that thimerosal was no longer a necessary ingredient, my decision was made. Why do it if you don't have to?  Problem solved.

Now, we decide these things based entirely on our family history and vaccine contra-indications. We also have a family member in the reserve military, and that opens a whole other can of worms with Uncle Sam. Seizure disorder is the primary issue facing us. For instance, Pertussis has a manufacturer's warning against use when the patient has a first-degree relative with seizure disorder - brother, mother, sister, father. Bundling of vaccines makes smart vaccination almost impossible for us. Just try getting the D and the T, without the P. Insurance won't pay for it, and our doctor couldn't order it because of the loss she'd incur. It only comes in bulk. Can't blame her there. We even hit a wall at the local health department.

My point is that everything should be considered logically. There is no either/or on the subject of vaccines, only when/if. But why stigmatize parents who choose to vaccinate intelligently by spreading out a child's vaccine schedule or act on the advice of the makers of the vaccine? See articles below.  My answer is that we've become arrogant in our ability to overcome death and disease. We've decided as a society that we finally know it all, and, well, if we happen to be wrong in a case or two, that's the minority. It's the only explanation I can find for such a rigid mandate that vaccine is sacrosanct.

They (born again vaccinaters) don't seem to understand that the one in a hundred who goes against medical logic and have an injured child thereafter, they don't really worry about the other ninety-nine. Their child is the only one who matters at that moment. This makes vaccine a personal decision, just as much as surgery or antibiotics would be between a family and a doctor. Of course, you can argue that it affects anyone who could become exposed by your family. That's partially true which is why parents should be encouraged to do a risk assessment. Vaccinating when the danger from disease is great and personal risk is low isn't a hardship. Our case illustrates this point.

Did we get MMR? Yes, but when we felt ready and without mercury additives. Did we get pertussis? Not just no, but . . .
Seizures are a very real risk that we see clearly now from watching what they do to our son and knowing our other children are also at risk. 

Here's the thing. Our children look to us to act as their eyes and ears until such time as they can do it for themselves. When looking all the information over, we decided that no one needs a hep shot on their first day on the planet. We decided that seizures are bad, and if Pfizer says it's a bad idea, it probably is. Last but not least, I decided that these were my kids, and I'm going to protect them as much as I can. That may disturb a few people and concern the CDC, but they can do what they want with their own children. My family has a different way of doing things.

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