Resources for the "one of" special needs student

Mississippi | Missouri (Photo credit: Kevin Saff)Moving to a small town was disconcerting, but finding out there were no children like D was even more so. No autistic students were enrolled at his level of cognitive difficulty.

 Indy is a veritable melting pot of disabilities and disorders, and every resource you could think of is represented somehow by their number. It made information easy to come by when you search. Here, even people are hard to find, and they are typically my favorite resources. People always seem to know something outside the manuals and tend to supply anecdotal guidance.

The first step after relocation is to find your local advocacy agency.
MPACT is the local equivalent to INsource back home in Indiana.
Here is where you find your most important resource, the law.

Determining placement here is a bit slow, so far. Children like D (severely disabled) must apply to the schools that are appropriate in the area in a fairly involved process with much testing and much discussion. We're waiting to hear now.

Rural areas are, understandably, lacking in my favorite resource; people. Take your support where you can find it. Schools and online resources are the best bet in a farm community.

My one in eighty-eight.

Light It Up Blue (Photo credit: Wikipedia)Everyone has by now heard about the CDC's revision of autism rates this week. You'd have to live under a rock to miss it. Sometimes people need to see the numbers, I get that, but just as often we lose the perspective in the big picture.

D is my one in eighty-eight. He certainly isn't the only one that counts to me, but he's the one , about whom, I am an expert. Much like those number crunchers up at the CDC. I have a specialty in the big picture. It's the big picture of one little man.

Widen that lens to include eighty-eight others, then hundreds and thousands, just like him, and my heart stops for a second. This number is up from 1 in 110. Think of the impact of that increase, even if it can be explained by detection. One in every eighty-eight who needs neurology, special education, dental care, accommodations and modifications, and more medical care than I can even name. It's mind boggling.

There is not just personal devastation with every autism diagnosis, but there is a social and economic devastation, as well. Autism has to become a priority, not just for the parents of the diagnosed or the lobby, but for society at large. Denial can't be laughed off any longer, nor can indifference continue unchecked. With rates rising at this pace, one thing is certain; whoever you are and whatever you do, it's only a matter of time.

Related articles

• Autism rates rise again to 1 in 88, CDC says (abclocal.go.com)
• CDC: One in 88 US children have autism (boston.com)

My One and ONLY Reply

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 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.

Vaccines and The Crisis of Faith

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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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• H1N1, Vaccines, and Mercury (blisstree.com)
• It's so cute when anti-vaxers try to discuss epidemiology... (scienceblogs.com)
• What's the Real Story on the Vaccine Debate? Learn More (wired.com)
• Jack's Fourth Show: How anti-vaccine groups rebrand themselves as legitimate autism charities (scienceblogs.com)
• The anti-vaccine movement shows just how low it can go (scienceblogs.com)
• Show me the science (blisstree.com)

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

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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.

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.

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