Re: Awareness is good if it's accurate!!!

November 16, 2010

Hi -

, I'm sure you know this, just putting in my two cents on the term used

(didn't read the article and have no idea of accuracy) :-)

My understanding is that the term " childhood apraxia of speech " came to

distinguish between adults who end up with apraxia of speech due to stroke or

brain injury, and is not to imply other cognitive delays - just that they are a

child with it. Developmental Apraxia, Developmental Coordination Disorder, etc.

also came about to distinguish that it is something from birth, and not due to

stroke, brain injury, etc. Unfortunately the insurance companies read

" developmental " and think " developmental delays " , etc. Actually I think it's

the medical community's attempts to distinguish between kids who are born with

it and people who get it after normal speech development but then have

stroke/brain injury.

Anyway, I guess a rose by any other name is still a rose. :-) I've decided

alot of these names are just " flavor of the month " , and the medical community

chooses what fits them best at any given point in time. Unfortunately it makes

it confusing for everybody in the misinterpretations that come with some of the

names.

I love how Ratcliffe talks about his Dyspraxia on Actor's Studio. He's

so cute - " I keep waiting for velcro to become a fashion craze! " . :-)

Have a great day!

Diane

>

> " Karsen had apraxia, an uncommon neurological disorder that in his case meant

he had the cognitive ability of a child half his age. "

>

http://www.lenconnect.com/features/x1270136011/-family-shares-experiences-\

after-son-s-diagnosis-with-apraxia

>

> This article refers to the what I consider cruel name " childhood apraxia of

speech " (or CAS which stands for the same thing) which implies either apraxia

will be outgrown in childhood, or as in the case of this article that there is

some sort of " developmental " or " childhood " limited ability of neurological

function...which I didn't believe would negatively affect children until they

were teens and adults and it's part of their school and medical records that

they have " childhood apraxia of speech " If I were any of you with CAS or

Childhood Apraxia Of Speech in your child's records I would get it removed

immediately and switched to just " apraxia " or " vebal apraxia " or even " apraxia

of speech " etc. I have all my life an ability to see things before it hits the

fan, so if you don't do this don't say I didn't warn you. Again when my son

Tanner was diagnosed in 1999 there was no CAS or childhood apraxia of speech

-there was DAS and developmental apraxia of speech -and we GOT RID OF IT!!! for

many reasons...so who brought it back?!! Not this group!!!

>

> The UK had it right with just calling it " dyspraxia " Radcliffe (Harry

Potter) grew up and still has " dyspraxia " Can anyone imagine the horror for him

if in the UK the articles came out as they would saying that - the star of

Harry Potter grew up with and still suffers from childhood dyspraxia (of ___ not

sure of what his diagnosis were but fill in the blanks and make the name longer

and longer and even more ridiculous)

>

> Awareness for apraxia is ONLY good if the information is accurate and what we

want to share. I would rather there was no article at all than one that implies

apraxia affects cognitive function (to half the age) and that it's " rare "

Apraxia is NOT rare!!! There are way more with apraxia than autism and there

are so many with autism that have apraxia and yet you don't see them calling

autism rare! You know why? Because apraxia as of now has no monies yet. Which

is why we are working on this with our " Pursuit of Research "

http://pursuitofresearch.org/pursuit.html

>

> If anyone would like to know more information about what we are raising monies

for email me at lisa@... or call me 772 335 5135 if you'd like to help. We

together are not just a walk, we are a movement!

>

> =====

>

November 16, 2010

Thanks Diane I do appreciate that point as that would be the only reason

-however like diabetes if one doesn't outgrow a condition and feels the need to

separate the two (if there are two) then why not type 1 and type 2. But...I'm

convinced that for example my son has acquired apraxia because he regressed at

11 months after the fevers etc. So if the point was the separate those that are

born with apraxia vs those that acquire it I believe we are putting the cart

before the horse since we have a condition that doesn't fit the diagnostic

description from 50 years ago (as autism doesn't either) and unlike autism

virtually zero research and awareness. In my opinion until we know the reason

for the rise in the children we can't and shouldn't (in my opinion) separate

child from adult onset -because prove to me they are different. And of course I

don't mean you!!! I mean this is why we need research. But in the meantime

having a now 14 year old son with apraxia who at 9 said to me in some way that

he no longer wanted to be called a boy but wanted to be called instead a " young

man " that the diagnosis name " childhood apraxia of speech " is a name that like

developmental apraxia of speech needs to be eliminated. Parents of young

children would not know any better in most cases. Again when the diagnosis back

when Tanner was diagnosed was DAS or developmental apraxia of speech if anyone

wrote DAS or developmental in any of his reports or evaluations or school

records I had them remove it. Perhaps because I tend to be more of a visionary

and look toward the future -and perhaps because I knew that apraxia is not a

developmental condition -just like we know from this group that even if apraxia

starts in childhood -it's not a childhood condition either.

And yes HP Velcro. Don't you worry -I have my eye on that young man for our

movie!!!! I just pray he will help us raise awareness- and know that he will be

such an incredible inspiration to so many little boys and girls with

apraxia/dyspraxia all over the world! He already is to those few that know!

=====

November 17, 2010

I agree! Sometimes the distinctions made with these labels are silly, and you

brought up a good point that children can acquire apraxia after birth, but they

are still kids, so what then? - ultimately it's there and we need to understand

it and it's many forms/causes and do something about it - and research is the

only way to find out! Labels are always frustrating. I have seen in some

diagnostic codes a place for a write-in for cause, so " Apraxia due to

___________________ " so that the diagnosis is the same, but a place to specify

origin if known. Sometimes helpful for doctors, etc.

For me, I'm more interested in what my kids are currently struggling with and

what we need to do to support them that helps ease the frustration and increases

their ability to express themselves and be successful than what label they have.

However, I know it's important to have an accurate way of saying what they have

so it can be communicated to doctors, therapists, teachers, etc. That leads to

my other favorite soapbox - Education!!!! :-) To this day it amazes me how

many preschool, elementary, and upper grade teachers who have never heard of

dyspraxia and sensory processing disorders. I know many child/adolescent

psychotherapists who haven't heard of it either (or have limited familiarity),

and since it can mimic things that some would prescribe medicine for (like

ADD-type symptoms since working memory can be affected - both my kids this way),

it's so important to know about! I am going to try and get my OT to do a

workshop at the place I work and invite child therapists, OT's, ST's, and

Teachers to come learn about it. That is on my agenda for 2011! :-)

I wonder why they are so much more aware in the UK than the US? Anyone have any

thoughts?

>

> Thanks Diane I do appreciate that point as that would be the only reason