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
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
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
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
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
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
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