Absolute power corrupts absolutely.....how true that is.  It was this very philosophy that spawned the method of fair distribution among me and my 4 sisters of any goodie in my childhood home.  One person gets to split the cookie, the other gets to chose which half they will eat.  Such a practice inherently provides equality---or at least as close to equality as is humanly possible.

During an animated discussion of this concept of power and corruption in a college philosophy class, I could never has guessed how close to home the thought would hit me 20 years down the road.  I couldn't have guessed how very undemocratic life could be for my special education child.

Will someone please tell me whose blunder it was to have the SAME people who assess and diagnose my child's needs ALSO be the ones determining remediation esources (money, time, materials, aids) she will recieve?  

AMERICAN ACADEMY OF PEDIATRICS RECOGNIZES WORLD AUTISM DAY

For release: APRIL 1, 2008

AAP media contacts:  Susan Stevens Martin  Debbie Linchesky
847-434-7131   847-434-7084
ssmartin@aap.org  dlinchesky@aap.org

CHICAGO – The American Academy of Pediatrics (AAP) supports World Autism Day (April 2) as a way to bring together groups that are committed to finding the causes of, and successful treatments for Autism Spectrum Disorders, which now affect an estimated 1 in 150 children in the United States. Thousands of children, parents and families are coping with what can be a devastating diagnosis with lifelong consequences.

 There is a widely held misconception about a child being limited to the language and/or behaviors that they learn from social skills training videos.  I was surprised to learn that a friend of mine, with an autistic son, was strongly advised to steer clear of video-based social skills training by her well regarded therapist.  The rationale was that her son was 'capable of higher level interaction with his peers than many children on spectrum.'  Therefore, there was a 'risk' of him 'scripting' (echolalia) if they used video to teach him????

How weird, I thought.  Since the boy doesn't talk I would think that ANY possible method of language development would be desperately sought after???? I knew her son to be notably withdrawn and NOT interactive.  There was little I felt I could say to her as my 'business' is to produce social skills training videos and I am loathe to put my apparent 'interest' above that of the mother of a disabled child.  She doesn't know that I've yet to take a pay check for my work.

At any rate, I found myself really perplexed about the advice my friend was so intent of taking.  How did she reason that her son would get from the point he was at---with very few verbal and social skills, to almost 'normal' social interaction?  To get from A to Z requires a journey through the other 24 letters of the alphabet.  One doesn't just start walking....they first sit, scoot, crawl and stand.  When a "higher functioning" child demonstrates the use of language or socialization techniques they’ve learned from video, a major step forward has been taken.  That is the perfect time for informed caregivers to teach and encourage alternate uses of the acquired skill as well as to introduce other appropriate behavior and language for the same circumstance. 

A qualified and experienced ABA therapist (I always recommend a Board Certified Behavior Analyst if possible) will not turn any parent away from an evidence-based teaching method like video modeling.  Likewise, a quality therapist understands the potency of video as a teaching tool for children with aspergers and autism and understands how to harness it for the benefit of all.

Interestingly, its been two years since I had this discussion with my friend.  I never talked to her about it again.  However, recently she told me that she changed her mind, bought some videos and the last time I saw her son he responded to me and my daughter as we greeted him.  Good thing my friend is a smart lady.......

On the site, www.ageofautism.org, Jenny McCarthy wrote, I’m asking all parents and autism groups to join me in demanding Julie Gerberding’s immediate resignation as Director of the CDC. On Monday, March 10th, beginning at 9:00am Eastern Daylight Time, let’s all start calling the White House and ask President Bush & Laura Bush to demand Julie Gerberding’s resignation for incompetence during the autism epidemic. The White House switchboard can be reached at: 202-456-1414. Also, on the same day, please call your local Congressperson and Senators from your state and ask them to call for her resignation, too. Julie Gerberding has led the CDC for 6 years during a time when the autism epidemic has only gotten worse. Despite tens of thousands of children who declined just like Hannah Poling, Ms. Gerberding stood before cameras yesterday defiant, cold, and defensive. Where is her humanity in the face of such tragedy? Why couldn’t she have said, “We at CDC want to make sure what happened to Hannah doesn’t happen to any other children, we want to make vaccines safe”? Rather than listen to the heartbreaking stories of so many parents, you can be sure that Ms. Gerberding is spending her time right now trying to get the Spin Machine up and running to minimize, confuse, and deceive the American public.” I wonder if Ms. Gerberding has read the full study out of the University of Manitoba which conclusively determines that delaying just the DTP shot until after 4 months of age cuts the risk of childhood asthma by age 7 by more than 50%. The study is based on health and immunization records of over 14,000 children (no small number). The evidence is piling up. Something is WRONG. Is she going to help find out what it is? I don’t think so. Her behavior so far leads me to believe that a change is necessary. Come on everyone. Pick up your phone and make the call. It’s up to us.

As I have been holed up in my office for days - ok weeks - I am totally missing my interaction with the general public - ok - well maybe not all of them… but certainly the interesting group….

and I have to be honest - that when I think about who has really touched my memory - it seems to be the “differently abled”… I guess because everyone else is just so ordinary and just looking at their day like all the others - have to do this and then I have to do this and then this and then I go home….

There is no deviation - and mostly (in today’s society) … no time to look around and see what and who is there…. and what they all have to say and do and give….

Last time I went to the city - I was of course behind schedule… I was sitting on the train platform putting on my makeup - and many people were looking at me like I was a weirdo…. define weirdo —– everyone fits the category at some point…

Then I got on the train and finished my makeup…. my cell phone rang…. and I laughed…. and realized that this cute little man was smiling at me… I smiled back… I motioned to him that the other person was talking incessantly …..”yack, yack, yack” and he smiled again…..

He kept looking back to me - just happy to be happy and see someone smiling at him…. he was holding a “trust fund” paper in his hands…. I was only hoping that the paper held enough power to take care of him for the rest of his life… all he wanted from me was a smile, acknowledgement and a nod…. not too much for me to give…..

these are the things I miss…..

Every day out for me is a day that makes me realize how important my job really is….. and how important it is to get out and hand out those smiles…. even though I’m behind schedule and putting my makeup on at 5pm on the train platform…. and everyone thinks I’m a weirdo…. it doesn’t matter…

what matters is what you do with your day and how many people you touch…..

Does anyone feel like I do when they leave IEP meetings? I feel like crying. Not just when I’m unsettled about the tone of the meeting. Even when it appears to have gone just fine. I feel like crying.

I suppose this means that I’m not only a mother by definition of my daily routine caring, feeding, teaching and disciplining my three girls. But that I possess the heart of a mother. I must confess that I have actually shed tears in IEP meetings. I don’t do that anymore. Not since I got some very good advice.

I’ll share it with you. It’s from an associate of mine, not really a good friend, but someone whose opinion I trust. She said, “The whole IEP process is basically a legal transaction. Treat it as so. You are meeting around a table to settle the conditions of a contract.” Rather than dealing with the terms of a mortgage, or the specifications of a business relationship though, you are negotiating the specifics of your child’s education. Their right to an education that is delivered in the most effective way to promote their learning and success. Period.

Don’t get me wrong. I still cry. But I wait. Until after. In the parking lot. I cry.

I have planned that this week, my blog entries would all deal with IEPs (Individual Education Plans). In fact, the week’s entries are already written and ready to publish. So, it is a little ironic that this morning I had an IEP-related moment at my daughter’s school. I went to the school to watch her perform in the 3rd Grade Strings concert.

I arrived a little early in order to supply members of the IEP team with the results of my daughter’s recent vision evaluation which I commissioned on a private basis since the school refused an OT (occupational therapists) evaluation last year. Not surprisingly to me, the results of the private testing conclusively determined that she has some significant visual processing issues.

I was met in the foyer by my daughter’s case manager, whose response to my comment about the findings that she suffers from double-vision was, “And she’s never told anyone that?”

Let me first say, that in my subjective opinion, her tone was questioning and suspicious. It made the hair on my back stand straight.

Now, for argument’s sake, pretend that her response was a sincere question and that she was really stumped by the concept that my daughter had never pointed her vision disturbance out to anyone one of us. IN THIS CASE, I HAVE SERIOUS CONCERNS ABOUT THE QUALIFICATIONS OF THE CASE MANAGER!!!!

A child who has never known normal depth perception doesn’t know what he or she is missing and is therefore, not able to describe their struggle, or even recognize it exists.

This is just one more reason that a parent’s role in the IEP process is so critical. In my search to unravel the mysteries of my daughter’s condition, my gut is the one thing that hasn’t failed me. I have wondered about her vision. Tests have always confirmed 20/20 eyesight, but that isn’t what we’re talking about here. Her issues deal with the optic muscles—and gratefully, with a regimented vision therapy program, she should be able to see normally in time. If I’d left it up to the school, this never would’ve been discovered.

So, I begin my week with this one, important thought which should never be forgotten as you work through your own child’s IEP. Trust your gut!!!

Is it possible that an unknown ‘invader’ could fall through the ‘cracks’ that aren’t being tended to during the well-meaning assault of early childhood vaccination? Geneticists are discovering common markers that implicate the potential certain individuals have for autism. Is an individual with these types of vulnerabilities, more likely to be affected when an insufficiently developed immune response is stressed by something as simple as a routine vaccine?

I know too many parents whose children have fallen victim to regressive autism following routine immunizations. I have faith in their observations. According to my science teacher they are valid standards for the development of a hypothesis. Perhaps, it is not this part of the hypothesis that is flawed but the seemingly logical jump to theorize that the exclusive ‘culprit’ is thimerosal.

I think it is intelligent to test a couple of other options. Like this. Does vaccination have the potential to trigger an autoimmune disorder resulting in autism? Or this. Is the burden of the present dosing schedule for immunizations recommended by the American Academy of Pediatrics (AAP) too heavy for infants?

Thoughts anyone—-?

I like science. In fact, I like scientists. The first thing that I remember learning in science was about what a ‘hypothesis’ is. I was a little disappointed, honestly, because I had hoped to do something a little more exciting like create an ‘in-class’ bomb or disect frogs. After all, my older sister did those things. Of course, I now understand the wisdom and necessity in learning first about scientific methods of testing suppositions.

When it comes to the hotly debated topic that early childhood vaccinations cause autism, the logical ‘culprit’ has overwhelming been thought to be thimerosal, a mercury derived agent which acts as a preservative for the antigen material itself. Unfortunately, scientific research has largely failed to prove a direct link exists. Conspiracy theories run rampant throughout the Autism community. People have lost jobs, credibility, tempers, marriages, money, homes, friends…………faith.

For me, well, I prefer to think about it. Look a little deeper. Scientists seem to agree that what we classify today as autism will one day be much more precisely defined as multiple disorders which all share a diagnostic criteria of socialization and behavioral deficits. I don’t think that the similarity between these types of neurological conditions and heavy metal poisoning can be overlooked. But if you read just one newspaper a week, you know that a myriad of environmental factors can lead to such contamination. Some of them we are involuntarily exposed to. Others, we naively seek (i.e. flouride).

So, I’m wondering where the new hypothesis’ are? I mean, take thimerosal out of the equation. Pretend it doesn’t exist. Now, ask yourself, “What is happening, what is REALLY happening when, say, pertussis is injected into the veins of a 2 month old?” All right, we know that something good comes of that. Immunity from pertussis. No one can argue that. But while the immune system wages a sort of war against the antigen, building the foundation for lifelong immunity to a terrible disease, whose minding the day-to-day annihilation that is the bodies miraculous natural defense. Is it possible that an unknown, ‘calvary’ could fall through the ‘cracks’ that aren’t being tended to during this seemingly harmless assault. Geneticists are discovering common markers that implicate a potential certain individuals have for autism. Is an individual with these types of vulnerabilities, more likely to be affected when an insufficiently developed immune response is stressed by something as simple as a routine vaccine?

I know too many parents whose children have fallen victim to regressive autism following routine immunizations. According to my science teacher, their observations are valid standards for the development of a hypothesis. Perhaps, it is not their observations that are flawed but the seemingly logical jump to theorize that the ‘culprit’ is thimerosal. It seems wise to test a couple of other options. First, could the vaccination trigger an autoimmune disorder resulting in autism? Second, is the burden of the present dosing schedule for immunizations recommended by the American Academy of Pediatrics (AAP) to heavy? What happens if the recommendations are modified to accommodate later and more spread-out administration.

Thoughts anyone—-?

Something has been bothering me for a while now. My professional pursuits deal almost exclusively with Autism. I spend a lot of time doing research. I track the direction that major players seem to be going in regards to research, treatments, educational accommodations etc. So, it is logical that I keep tabs on the Center for Disease Control (CDC).

I am always skeptical about organizations or people that represent any type of interest and then spend time and money disputing the claim of contrary organizations. I guess I was just raised to proactively seek answers. If they can’t be found in someone else’s position, then instead of disparaging them, pursue the truth until you’re satisfied or disproved. That was kind of a mouthful. In this case, I mean, why is it that the first thing one reads on the CDC’s Autism Information Center is about childhood vaccinations? Currently, the CDC has even jumped on the anti Eli Stone and ABC bandwagon. Forgive me, but do government funded agencies really have the time to control pop-culture? I think this is an embarrassment to all Americans not to mention how condescending the language is,

“ABC’s debut show of “Eli Stone” will center around the issue of vaccines and autism. [The CDC] hope[s] people will keep in mind that this show is a work of fiction. Entertainment-based television shows can be a source of education for viewers, but should not be a primary source for health and medical information. “

I haven’t finished ‘grinding this axe’….more later.