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Apraxia what's that?

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How did our organization end up being the voice of apraxia through the first (and still only) segment about verbal apraxia on nationwide TV?  Aside from the fact that we are the largest personal support source anywhere for apraxic and language disordered children, and are continuing to grow at an amazing rate, it all goes back to a half page article in The Star Ledger newspaper about me being "An Advocate For Children With  A Little Known Disorder," written by Michelle Howe.  

The Star Ledger has one of the largest distributions in the country, and one of the people that read the article was Stefanie Linzer, a producer for Inside Edition.  Over the course of the next few months I coordinated with Stefanie and gave her the names and background of EVERY person that I knew in the world of apraxia personally and through the internet, and a list of children I thought would be good for the segment. I wanted to show not only young children, but those who "grew up" with apraxia, those that were misdiagnosed, and teased, and those that can now talk about it in hopes of protecting the apraxic and language disordered children of today and tomorrow.  I did such a good job that the producer, Stefanie, offered me a job ...really! 

Inside Edition, as you know, does "Investigative Reporting," so they took information from me, but they chose who they felt would be the strongest for the segment and interviewed them as well.  The first expert names I gave to Stefanie the producer, were those of a particular well known parent who is in charge of another large apraxia website, and some nationally well known apraxia Speech and Language Pathologists.   Speech Pathologists are the one that typically diagnose and treat apraxia of speech, so they would be the best spokespeople to raise awareness about apraxia, right?

Wrong.  Dig just a bit outside of the names of "apraxia" Speech Language Pathologists (SLP,) and you will find that not even all the Speech Language Pathologists were on the same page when it came to what apraxia was. More shockingly, not all Speech Language Pathologists believe it exists, and if it does they say, "it's very rare."

As a person with a marketing history, even if it's mostly in the children's animation and toy area, something began to gnaw at me.  I really had not given names of the experts that the public would respect and believe.  Perhaps there is a reason that not all SLPs accepted apraxia as a diagnosis.  We are dealing with a neurological condition, apraxia, that is a misunderstood and misclassified medical condition worldwide, aren't we?   If apraxia is neurological, wouldn't the public, including the "doubting" SLPs, also want to hear what a neurologist has to say, or what a neurodevelopmental pediatrician has to say about it? 

Here was a classic case of the tail wagging the dog.   Why would most SLPs accept as fact a diagnosis from a parent?   And, why would most doctors accept as fact a diagnosis from an SLP, especially if it's supposed to be neurologically based?   

Then came the "last straw" bit of news...Stefanie, the producer of Inside Edition told me about a doctor who told her that apraxia was a "psychological disorder," and I knew then that the focus of the other organizations missed the boat, and that this segment could have been detrimental if I presented only what I believed at that time were the "best" people at that time, and if I presented only the information that they present.  This is why after so many years most people still have no clue what apraxia is.  This is why our focus had to change immediately for the sake of apraxia awareness, and for the sake of the apraxic children out there, whose numbers are increasing for some reason.

This point grew more obvious as time went on.  Here we have a neurologically based disorder, and the best spokespeople I could come up with as a parent back then was another parent and SLPs.  

As an "investigative show" I knew Inside Edition  would want to interview experts, even if it's only for behind the scene reasons.  They would want to hear from the experts respected by the public  for a neurological disorder.  They would want to interview the doctors.  If I didn't get them doctors to interview, they would most likely find their own.  But what if the one they interviewed believed apraxia to be a "psychological disorder?"  How much more would that hurt our children, especially the ones that can't speak for themselves?

I quickly realized that we needed the medical professionals to work together with us!  I also quickly realized that in addition to needing this for Inside Edition, we needed this for credibility in the schools, for insurance reasons, and for early diagnosis and appropriate treatment.  We need this also because a neurological condition needs to be diagnosed, studied, researched, and overseen by a medical professional.    

I needed someone right away for Inside Edition, and I immediately knew who.   Fortunately we have someone like Dr. Marilyn Agin right here next to where our large organization existed, and because of her varied history, she was not only great, she was perfect!

What started as Dr. Agin helping us behind the scenes with Inside Edition, has turned into so much more today through our creating the CHERAB Foundation together.  Where those with questions of credibility of diagnosis can "Ask The Doctors"  Where we are meeting with various hospitals to become affiliated in research and treatment, and so much more...

OK, I can let you know one thing.  There is a writer for a major magazine lurking on our email list for stories from our members...  

Best, Lisa Geng President CHERAB Foundation