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Making Sense of Special Education-ese

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Are you up on your NOREPs, IEPs, and FAPE? If you have a child with autism heading back to school, you'll be heading into meetings that will test your knowledge of "special education-ese!" How well do you know your acronyms?

Know Your Special Ed Acronyms

Autism Blog with Lisa Jo Rudy

"No Limits" Video from Model Me Kids - What Happens When "Real Men" Get Involved with Helping Kids on the Autism Spectrum

Wednesday August 27, 2008
Model Me Kids has produced another short online video called "No Limits." It's not about heroic moms or curing autism. It's actually just a brief documentary about a karate program for boys with autism.

So what's so special?

Take a moment to watch, and you'll notice a few unusual points.

First: the kids in this class may be doing modified moves, but they are working on real skills in a real karate studio with real karate masters. This isn't therapy - it's karate. To me, this is critical. All too often, our kids spend hours in music therapy without ever learning to play an instrument. They spend years in art therapy without ever learning the elements of color, perspective, or rendering. Here, our kids are doing the real thing - and from the video, it seems clear that at least some will go on to earn belts and succeed in real, "unspecial" tournaments.

Second: the teachers in this class are all men. Every one of these men cares about and knows a great deal about karate - and almost nothing about autism. Pay attention to their voices and their moves. They are supportive and nurturing, but their voices are loud; they give commands; and they expect each child to do what they are asked to do, and to give it their best. In my opinion, this is a refreshing change from the wheedling, coaxing voices and limited expectations that are so often a part of expensive therapies.

Have you seen a program like this one that focuses, not on autism, but on acquisition of a skill? What are the best programs you've seen out there that make autistic kids a part of the action - and set aside "therapeutic goals" in the quest for real skills? Share your experience!

Pediatricians Push Vaccines, But Have Little to Say About Autism

Tuesday August 26, 2008
I am 99% sure that my son, who was diagnosed on the autism spectrum at age three, is NOT vaccine injured. My certainty, however, is not reflected in the stories of hundreds - possibly thousands - of parents of children with autism who believe otherwise. These parents are absolutely certain that vaccines caused their child's autism, and they're not shy about making their certainty known - through blogs, through, books, through marches, through broadcast media, and through the grapevine.

In this difficult and complex situation, pediatricians are doing their best. Based on their knowledge and understanding, they are working hard to ensure that parents trust in the safety and efficacy of vaccines - and in the trustworthiness of pediatricians as a group. Here's how R. Douglas Schultz, M.D., chairman of the Department of Pediatrics at Shannon Medical Center, put it in today's Chicago Tribune:

Pediatricians want to make sure that parents do not rely on incorrect or incomplete information about the safety of vaccines when deciding to get vaccines.

Thanks to vaccines, children have less to fear from bacterial meningitis, pneumonia, measles, whooping cough, polio, and many other infections that killed or crippled many children in the past. These infections can make a return if we are complacent.

Vaccines go through rigorous safety tests and after approval they are monitored closely for rare side effects and adjusted whenever there is a need.

Mothers have put a huge trust in us when they hand us their baby to give the vaccines. We must understand that it was easy in the past when diseases were more common, but it is harder now when the threat of infection does not seem so great.

Schultz goes on to "debunk" various theories about how vaccines might cause autism, and concludes by saying, "Again, we understand the fear of parents and want to try to provide the best information available for you to make an informed decision."

I have no doubt that Dr. Schultz is intending to do his level best by both parents and children. But here's the problem: he says nothing whatever about autism, its causes, its prevention, its treatment, or its cure.

Dr. Schultz is by no means alone - in fact, he's in excellent company. We ourselves went to one of the top developmental pediatricians in the United States to confirm our son's diagnosis of autism, and by golly we received our confirmation. Period. We walked out of that very highly respected pediatrian's office with the advice to place our son in a small classroom, and to check out a particular website which offered a range of information about high functioning autism and Asperger syndrome.

In fact, like almost all parents who walk away from a medical doctor with an autism diagnosis, we were on our own. It was up to us to "do our research," and then make decisions based not on the scientific knowledge of our medical professional but on whatever we could find, read, and make sense of.

If pediatricians and pediatric professionals in general expect parents to take their advice when it comes to autism, it seems to me that it's their obligation not only to admonish but also to provide necessary resources for action. If our child is developing oddly, it's up to our pediatricians to recommend next steps for evaluation AND action. If our child is diagnosed with autism, it's our pediatrician's job to recommend what they consider to be appropriate treatments - and then to guide us toward practitioners who can provide those treatments at a reasonable rate and in a timely manner. If we're concerned about a second child's risk of autism, it's our pediatrician's job not only to reassure us but also to present us with options that might - just possibly - prevent disease while ALSO lowering risk of vaccine damage.

I don't doubt the good faith of the medical profession. But good faith and a medical degree are no longer enough. Perhaps we need the old fashioned kind of doctor once again - the kind who knows us, understands our situation, and can help us along the road to wellness. Lectures on the safety of vaccines and the trustworthiness of the medical profession to dose us just won't cut it anymore!

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