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 Insource.org 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?

via www.ageofautism.com

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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Saturday, November 28, 2009

The Art of Creative Thinking

Crayon TipsImage by laffy4k via Flickr
Behavior strategies can be creative. There's no law against it. In fact, some professionals even encourage creativity with behavior issues. I thought I'd take a minute to blog about some strategies that I've seen work.

Making a team- Several kids I know need serious help during a meltdown. A meltdown, which any veteran survivor of special education can tell you, is the moment after the moment when a kid has had way too much. You can write a team approach into your behavior intervention plan. Who works with your child best? A teacher? A coach? You simply write up a game plan for dealing with a meltdown and those are the people you put in the game.  The goal is always the same; Get the student passed the meltdown and calm, then you move on to the business of his day.

One-on-One- Schools don't want to do it because they just can't afford it too often, but it does work. One aide to manage one student is sometimes called for when interventions will be intensive and of long duration.  This is likely something a parent has to put on the table. Don't wait for a teacher or administrator to put it out there. You could be waiting a while.

Give Sign a Try- I know all the arguments. It's not widely used. Others won't know how to talk to them. Okay, I get it, but communication is the biggest stumbling block there is for a child with Autism especially. I have two responses to the argument drawn from my own experience and philosophy. First, my experience is that it really reaches kids who work better tactilely or visually. Second, my philosophy is that people need to stop being lazy in our society. If you are in a social situation with a sign speaker, then get off your bum and learn some! Could I have put that more diplomatically? Yeah, but what fun is that?

These are by no stretch of the imagination the only creative interventions you can use. These are examples only. Parents drive the case conference committee, and while some educators disagree with me that it should be that way, it's the way it is. Think about it. Every other person at that table has multiple other students to work with this year. Yours isn't the only one. You are the only member of that committee who is exclusively focused on your child. A teacher doesn't live with the result of that committee's hard work. The family does.
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Thursday, November 26, 2009

There's Tired, and Then There's Thanksgiving Tired

...and dieDImage by 27147 via Flickr
The flu took it's toll this week, and the week before that. Its probably reason number 1 that I feel this tired today. Isn't it?

Then again, I've felt this coming on for a while. There are triggers for everyone as they run through life. Sometimes the world just goes gray. Thanksgiving does that to me for some reason. It's secretly my most hated holiday. Think about it.

An entire day dedicated to the celebration of how thankful we should be. It makes me regress yearly to my angry stage of grief. Well, I suppose I'm thankful that D has something that won't kill him. That's something, I guess. If you ignore that he can't talk to us and that he's not going to marry, go to college or even play little league, we have much to be grateful for.

The upside is that Thanksgiving demands that I work my behind off in the kitchen, in the house, keeping the peace. It's like a holiday marathon that begins days before and lasts into Thanksgiving night as I wind down from a good cry on the bathroom floor.  I only think about it if I stop.
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Sunday, November 22, 2009

Most Restrictive Environments

Every one knows the phrase, but so very many educators don't understand. My son attends RISE Learning Center in Indianapolis. It's considered one of these environments. However, let me tell you why it's least restrictive for him.

Darrel couldn't be given the time and attention in a gen ed setting or even a simple special ed. classroom to learn simple things like walking in the line or not hitting others to get attention. His understanding and his behavior would cause him to be ostracized socially and under-educated in a less restrictive environment.

D can't sit down for very long, and it's not just behavior. He CAN'T sit down for long periods of time. It is painful, uncomfortable, distressing. Regular academic environments have the restriction that you must. It must be done this way, and that makes them too restrictive for Darrel. This is the reason a more restrictive environment belongs on the continuum of services for special education students.

It shocks me everyday to meet professionals in education who are against these environments touting inclusion, inclusion, inclusion like it's the magic cure. We have numbers that inclusion has good side effects, but my question is; Has anyone actually looked at its effects in terms of effectiveness compared with intensive, comprehensive service environments like RLC? I doubt it. The severe end of the autism spectrum interferes with our preconceived notions. My hope is to see education truly individualized as we profess to want it. Inclusion isn't right for every child, or it may not be right for right now. With intensive work on behavior and symptoms of the spectrum, a child who would never be included like Darrel or who would never learn if included, might have a hope of inclusion in the future.

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Monday, November 16, 2009


Taking a short hiatus to deal with the holidays. Hope everyone has a wonderful time. Keep checking our links to see any new information that may come up. Any questions on this website can be addressed to rlc_mommy@comcast.net

Saturday, October 24, 2009

Wednesday, October 14, 2009

reBlog from Jolie Mason: Indy Insights-South

I found this fascinating quote today:



Just yesterday, I met a man with an autistic child like mine, and he began a diatribe I'm sure his son will hear a thousand times in his young life, "Autism is no excuse for bad behavior". No, sir. It's actually a damn good reason for it. You see, behavior is communication, but in our society the average person doesn't care why something is, only that it shouldn't inconvenience them.Jolie Mason, Indy Insights-South, Oct 2009



You should read the whole article.

Saturday, October 10, 2009

Autism Training for Me!

Major brain structures implicated in autism.Image via Wikipedia

This week I completed some training from Indiana Resource Center for Autism with our school's autism team. Though I left with my head spinning after considering myself somewhat of a professional in the topic, I left armed with more information than I'd ever had.

Movement difference is a topic that really opened my eyes to not only my son's little habits, but the kids we work with in general. We call avoidance behavior so many things we don't understand that may well be movement difference. In other words, when a kid moves slow, it may mean they move slow, not that they don't want to move. The only way to find out is through thorough analysis of DATA.

We learned the steps to functional behavior analysis and so very many things. The most important for families and educators was this link. AIM can be used to train paraprofessionals, students, peer helpers, parents, anyone. Several books were cited and recommended by many experts. I really want to encourage parents to look into some of them.

Look Me In The Eye by John Elder
The Way I See It by Temple Grandin
Awakenings by Oliver Sacks

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Wednesday, October 7, 2009

InSource

Article Seven Training ONLINE!

How do you like those odds?

Autism AwarenessImage by jasoneppink via Flickr

1 in 110. With an adjustment for cell phone versus land line use. Those appear to be our new odds of having a child with Autism. NPR reports in its' blog that there appears to be an increase, but no one knows what that means.

Can I say something as a parent and advocate of special needs children? Well, duh! Welcome to our world. People may disagree about why it happens, what happens exactly, or how to deal with it, but, one thing remains the same, we all know it's happened a lot.

Several facts come to mind now as I write this. First, we put only a fraction of our research dollars into autism's cause. Second, special education services are cut far too often when our autistic children's numbers are increasing. Third, bureaucrats and scientists spend way too much time debating stupid things like whether we put mercury in flu shots or 15 minutes of social instruction v. 5. Can we announce now that everyone is on the same page?

Saturday, October 3, 2009

Here we go

A tree covered with SnowImage via Wikipedia

The long, and apparently, cold winter is upon us, and there's too much to do. This week I painted our apartment dining room wall. Why? Not because I wanted to, but because Darrel has been so very, very destructive. It looked awful.

Now, I've gotten tired, and it's not over yet. I have a cleaning crew on Monday. Ironic how that means I have to fix and sweep up and do my best to generally disappear the other things Darrel has done.

As he's gotten older, it's gotten better, but no one, even my husband, realized how much time I devoted to cleaning walls and fixing things around the house.

And just once, it would be nice to look at lamps or vases in the store and not think, "how long would that last?" Every year since D was tiny, we've "autism-proofed" our Christmas tree. It only takes one glass-as-candy incident to drive home the need. The list of things we can't have in the house is almost as long as the list of things we want for Darrel.

What can you do? When it comes to autism, as it is with most things, life really is adapt or die. Maybe this week we should all look at our lives and thank God for options. You'll know it when you don't have them anymore, and oh, how we miss them when they're gone.
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Monday, September 28, 2009

How the GOP Scares Grandma - The Daily Beast

Once the party of fiscal sanity, the Republicans are now wailing that the Democrats' health-care plan cheats seniors out of money. Matt Miller on the right's shameless gambit.

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Healthcare on Ice!

The Rideau Canal serves as a waterway in summe...Image via Wikipedia

"Spending restraint will not come easily to the Democratic Party. Pent-up demand for investment in education, health care and the environment is understandable after the Bush years. But long-term progressive government can't be built on a foundation of debt and deficits."- Sen. Evan Bayh.

We're skating into dangerous territory. This update came in my email this week. Basically, as one of those in the "rationed" segment of society, I understand one thing about the Democratic party. It has no guts.

Our medical system is a large portion of the mess we find ourselves in today. A lack of reform doesn't just leave those with Autism and disability out in the cold. It will destroy any chance we have at a stable economy. We're letting the bill before us now be changed to something that benefits no one but insurance industry lackeys. What else can I say? Oh yeah, thank you, Senator, for the heads up. When's that election again?
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Friday, September 25, 2009

We've got to M.O.V.E.



You know that intel commercial, right? Our rock stars aren't like your rock stars. I had that experience today at school. Linda Bidabe visited our site today, and I had no idea she would be there. It was awesome! My admiration for this woman is infinite.

M.O.V.E International is a program dedicated to improving the quality of life of those students with multiple disability. Great Britain has adopted this as a national curriculum. Across Europe, MOVE is widening it's reach and making a difference. What is that?

You see that equipment? Simply by getting these kids and adults up and moving, we are engaging both minds and bodies in learning, building muscles and avoiding injury, and bringing choice and freedom back into their lives. The difference I've seen in the kids I work with is nothing short of miraculous.

So today I got to see one of my rock stars. If we can make half the difference for children with Autism that Linda makes with her program, I'll be well and truly happy.






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Wednesday, September 23, 2009

I Vant To Be Alone!

Cover of "Overcoming Autism: Finding the ...Cover via Amazon

And other things that aren't going to happen.

Today was not a typical day for me. It was much, much worse. Last night, I got to take an ER excursion that I can’t pay for to determine if I had appendicitus. Good news! I have a bladder infection that could take down a small horse! So that’s all right then.

Maybe it’s because I feel like I’ve been hit by a truck, or maybe it’s because I let myself watch too much news today. Whatever the cause, I’m mad. I resent that one day not cleaning my house means two days making it right again, not that it ever gets to right and stays there. I resent being a single mother with a husband because autism can be harder to deal with “for the man”. I want to scream that it isn’t fair, even though I hate the “Why me?” crowd.

Mostly, I resent that nothing ever gets finished in my life, and no one else is ever totally satisfied with my progress. A typical day for me starts at 6 Am with the chickens. Kid no. 1 must be dressed, medicated and on the bus by 6:45, then kid no. 2 has to get up and dressed. She gets dropped off at a private kindergarten, lunch in hand, because it’s that or I can quit the “at will” job I have to stay home half days every day. Then kid no. 3 must be put on a bus. At twenty minutes after eight, I am “at liberty”, unless I work that day.

At my son’s school, I substitute and love it because I know every kid, love every kid, and I’m an expert on disability thanks to my life. It’s also the only possible job and tons of us moms work there. Day care won’t take some of our kids, you know. Too disruptive. Legal liability and all that. You understand. So we work their schedule, their very abreviated schedule.

If I’m not working, I make coffee. I drink coffee and look around to decide what fire gets put out first. After coffee, I begin the first of approximately five loads of laundry that I will do today and fold as I can. I vaccum if I’m really lucky. I shampoo floors and couches and wash walls. This must be done at every opportunity since kid no. 1 can’t help but make food messes and touch EVERYTHING. If I could be really liberal in my thinking, maybe I could see it as concept art. Alas, that’s not me.

On days when I help in advocacy for parents, I spend time online or making calls. I try and set parents up with help where they need it. Occasionally, the need arises to organize a few barely attended events for parents who know nothing about the system yet, but need desperately to learn before it eats their child’s opportunity for growth alive. I wish that was over-dramatic.

But today, I didn’t get to do any of those things. I got to curl into the fetal position, until it was time to throw up again. I resent that too. Time away from that schedule for me is crippling. It can make my life ridiculously difficult for weeks to come. Add to it that I can’t afford to get sick. I can’t afford to die. What am I saying?

In the ER, I read “Overcoming Autism” while I waited for tests, then picked up my meds to scoot home just in time to medicate the unmedicated and put everyone to bed. My husband’s idea of supervision and mine do not meet.

You know what? I am technically unemployed, and one of those drains on the system everyone else gets so wound up about, but I don’t think I’m lazy. I’m too exhausted to be lazy, still how much of a failure can I feel like?

Then there are those people who overestimate my ability to tackle the symptoms of autism, including family . My son started pulling his pants down for no real reason this last week. Yeah, you’d think there would be a very clear reason, wouldn’t you? Every now and again, I don’t know he’s done it and a “window incident” occurs. Oh, there is no greater joy than having your husband ticked off because kid no.1 was in the window again. It’s my failure to control circumstances that put him in that window, I guess.

Here’s the thing; the amount of work it took to get him here is unfathomable. Repetitive tasks at the store and at home. Constant verbal reminders to do a thing. Nights when he had such sleep disturbance he slept ON TOP of me. There was screaming and police calls because people thought we were beating him or killing him. There were choices about side effects and outcomes. You can’t imagine what that’s like, especially knowing that the difference it all makes could be great or miniscule depending on the will of God. So, I guess what I’m saying is “ Get off my back, People! I’m working over here!”


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Sunday, September 20, 2009

Must we flush !

I Think...Image by crowolf via Flickr

Things you never thought you'd say until you had a child with autism. That's my thing this week. Of course, it was preceded by "We do not RIDE the cat" and "Pants UP!"

We're flushing the toilet. No, I mean a lot. It's killing the planet one flush at a time. Referring back to the article on stim, this is one of the battles you take on, but how does one fight the lure of the flush?

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Wednesday, September 16, 2009

Dick Lugar's Horrible, Terrible, Very Bad Response.

{{Potd/-- (en)}}Image via Wikipedia

After the economic recession in our country comes to a conclusion, a high priority may be extension of health insurance coverage and reform of many health care practices. When such changes occur, they are likely to be expensive and Americans will need to debate, even then, their priority in comparison to many other national goals. One reason why health care is likely to remain expensive is that major advances in surgical procedures, prescription drugs, and other health care practices have prolonged the lives of tens of millions of Americans and improved the quality of those additional years. The Washington Post, in a front-page story on July 26, 2009, mentioned that "the fight against heart disease has been slow and incremental. It's also been extremely expensive and wildly successful." Americans should not take for granted all of the advances in health care that have enriched our lives, but we sometimes forget that we require and even pray for much more medical progress in years to come, which is likely to be expensive.

This came in a response from Sen. Lugar this week to my letter about health reform. While I see his point that Americans are extending their lives through medical advances, he is a bit off here. You see, people in this country are not extending their lives beyond other industrial nations' averages. It just isn't factual to say healthcare is expensive because we're saving lives.

According to Opensecrets.org, these are Sen. Lugar's top 5 contributors:

arnes & Thornburg$39,050

Eli Lilly & Co$34,850

Ice Miller$29,000

Cinergy Corp$24,250

NorPAC$20,710


Those numbers are not wholly representative as they are only individual contributions, but you get the point. Living in Indianapolis, I see the Lilly lobby machine at work. It makes government officials forget cogent facts like record-breaking profits that do NOT go back into research and development. In fact, even big pharmaceutical companies and insurance companies are recognizing that they need to get on the bus or be left at the stop, so why would the senator make the above argument?

Why would any of them? Because of campaign finance, in my opinion. Our system has a glaring, gaping hole in it. By allowing any industry subject to government regulation to give funds for campaigns, we are basically putting the fox in the hen house. Of course, our representatives should have the guts to go with their beliefs, but they obviously don't. I say this in optimism, because I hope Sen. Lugar knows these things to be false but said them anyway. You can fix corruption, but there is no known cure for stupid.


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Saturday, September 12, 2009

EVENT!

RISE Learning Center is hosting a seminar on September 15 at 6:00 pm. Rise is located at 5391 Shelby Ave. 46227. The seminar is Building Positive Relationships with Your School, so if you live in the area and have a special needs child feel free to join us! Childcare is provided.
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Living for the day . . .

Cotton CloudsImage by Brian Hathcock via Flickr


Life isn't as it was. Mostly, I'm okay with that, but today I called home as I usually do. Daddy's gotten up in years, and he's changed, quite a lot. We all have. That made me think long and hard about where I've been and where I'm going. It made me think about how old I feel right now, and how old I might feel when I'm eighty.

Life is exhausting for some of us, and often we just wait for the day we can return to that simplicity of childhood, those days when mama and daddy fixed everything that was wrong. Everyone figures out eventually that those days aren't coming back, except that it's now our turn to fix everything and be the hero.

I'm okay with that, until I hit something I can't fix like seizures and migraines and autism. Then it sucks big time to be a grown-up. Then I want to go back to when my biggest worry was stepping on a snake or boys.

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Sunday, September 6, 2009

Five For FightingImage by Mandy No Good via Flickr

World
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To Stim or not to Stim. That is the Question!

Spinning is fun. We don't have to be auties to know that much. For Darrel, it 's a way of life. The things we do. . . We spin everything. If it goes in circles, we have to try, twice. If it makes colors when we spin it, OMG!

As his parents, teachers, friends, we laugh at the habit. We try to stop the habit. Sometimes, we accept the habit, but it is one of the things that makes us different. When we go out, we're sometimes carrying things to spin. We pick the hill we mean to die on, and spinning isn't usually that hill. Speech might be. Screaming might be, but spinning? No, not this week. Probably, not next week either.

Maybe that's what I wish people knew. We're trying. Hard. However, autism kicks our butts a lot. And it depends who you talk to whether it's somehow our fault. Some people think it's just part of who he is, and we're wrong to change him. Others say we're letting too much slide. Discipline is key.

Autism, for us, is severe enough that I have to pick and choose what we're going to fight for that week, that month. We focus on speech more often than not, and behaviors that alienate him from others like aggression or screaming. However, when we get the well-meaning advice or contemptuous glares from those in our community for whom we are an inconvenience, part of me wants to grab them and shake them. Scream a little myself. Say, "What the Hell would you start with, Lady?! Huh? Just what do you think you could do in my place? Because I could use a spa day. You wanna turn?" The difference between Darrel and myself is that I don't get to say that. God, I want to, but I don't.

Most days the misunderstanding just rolls right off, but some days it's harder. Some days, I woke up thinking about all the things he won't get to do or I'm tired and he's tired. I will admit to occasionally, during the early days when things were REALLY bad, letting my tongue go in a grocery store. Sleep deprivation lowers inhibition. I can't support that statistically, but it's my educated guess.

The good news is that he's better, and it's less of an ordeal (THANK YOU JONI) to go out and do things. The really good news is that he's become pretty aware of when I'm headed for my own meltdown, and Darrel hugs appear to be the cure.



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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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