Re: Is Apraxia growing, or am I just becoming more aware?

[Guest guest]

I am so happy to hear other parents are concerned about the lack of awareness of

apraxia!  Lack of awareness affects everything from how our children are

diagnosed, to how they are educated, to funding for apraxia research. 

 

I am meeting with staff of my congressman tomorrow to discuss recent autism

insurance reform and the need to include all pediatric neurological disorders in

this reform.  The plight of the autistic community to get insurance coverage and

therapies for their children is not unique to autism.  As parents, we need to

find a way to organize and raise awareness and support for apraxia, in our

communities and congressionally.  I will keep you posted on how my meeting goes

and what is coming next. 

 

Feel free to send me anything you would like for me to share with my

congressman!

jenfromcinci@...

From: <cp_mistyrose@...>

Subject: [ ] Is Apraxia growing, or am I just becoming more

aware?

Date: Tuesday, December 16, 2008, 8:55 PM

Honestly, before my son's eval, I never heard the word apraxia.

Obviously, most of the people (family/ friends) that I've spoken to

since hadn't heard of it either. But between a few mom's groups in

the area, my best friend and I realized that between us we personally

know 8 children with apraxia of speech. This is only maybe 300 women

in 3 moms groups across NJ - not counting children from my son's

therapy, kids in my daughter's preschool disabled class, etc. How

many more children can be out there if this is in such a small circle?

While I understand this is nothing like autism when it comes to

severity or sheer numbers diagnosed, it made me wonder... Most people

never heard of autism until Rain Man. Now, awareness is everywhere.

Why oh why have most people never heard of apraxia? (And no,

Radcliffe's " well, I couldn't tie my shoes " does NOT count in my

eyes. Not to discount his ability to make people aware, but it's so

much more than that).

I guess this is more of a vent than anything, because I don't know

where to go next with apraxia awareness... I've just discovered they

do make a ribbon for it (at apraxia-kids.org), but other than that

and a few t-shirts, the word doesn't get out like it does with other

disorders. What is there to do?  Hopefully one day it will get the

attention and help it deserves.

------------------------------------

[Guest guest]

I am so happy to hear other parents are concerned about the lack of awareness of

apraxia!  Lack of awareness affects everything from how our children are

diagnosed, to how they are educated, to funding for apraxia research. 

 

I am meeting with staff of my congressman tomorrow to discuss recent autism

insurance reform and the need to include all pediatric neurological disorders in

this reform.  The plight of the autistic community to get insurance coverage and

therapies for their children is not unique to autism.  As parents, we need to

find a way to organize and raise awareness and support for apraxia, in our

communities and congressionally.  I will keep you posted on how my meeting goes

and what is coming next. 

From: <cp_mistyrose@...>

Subject: [ ] Is Apraxia growing, or am I just becoming more

aware?

Date: Tuesday, December 16, 2008, 8:55 PM

Honestly, before my son's eval, I never heard the word apraxia.

Obviously, most of the people (family/ friends) that I've spoken to

since hadn't heard of it either. But between a few mom's groups in

the area, my best friend and I realized that between us we personally

know 8 children with apraxia of speech. This is only maybe 300 women

in 3 moms groups across NJ - not counting children from my son's

therapy, kids in my daughter's preschool disabled class, etc. How

many more children can be out there if this is in such a small circle?

While I understand this is nothing like autism when it comes to

severity or sheer numbers diagnosed, it made me wonder... Most people

never heard of autism until Rain Man. Now, awareness is everywhere.

Why oh why have most people never heard of apraxia? (And no,

Radcliffe's " well, I couldn't tie my shoes " does NOT count in my

eyes. Not to discount his ability to make people aware, but it's so

much more than that).

I guess this is more of a vent than anything, because I don't know

where to go next with apraxia awareness... I've just discovered they

do make a ribbon for it (at apraxia-kids.org), but other than that

and a few t-shirts, the word doesn't get out like it does with other

disorders. What is there to do?  Hopefully one day it will get the

attention and help it deserves.

------------------------------------

[Guest guest]

please let me know if there is anything I can do on behalf

of CHERAB to help. You can reach me at 772 335 5135. I'll discuss

with you some of the things we have going on behind the scenes which

perhaps you can share.

=====

[Guest guest]

All of the doctors my son has seen have heard of Apraxia. (What a

relief eh?) I never heard of it before my youngest was 2 1/2. I

don't know anyone else with Apraxia however.

My youngest was also born with hypospadia. The opening where urine

comes out was in the wrong spot. Apparently this occurs in 1 in 4

boys born in the USA. I never heard of it before my son was born!

I wear the t shirt from Cherab and I have the car ribbon. I have

found other moms this way at the library and parks.

>

> Honestly, before my son's eval, I never heard the word apraxia.

> Obviously, most of the people (family/ friends) that I've spoken to

> since hadn't heard of it either. But between a few mom's groups in

> the area, my best friend and I realized that between us we

personally

> know 8 children with apraxia of speech. This is only maybe 300

women

> in 3 moms groups across NJ - not counting children from my son's

> therapy, kids in my daughter's preschool disabled class, etc. How

> many more children can be out there if this is in such a small

circle?

>

> While I understand this is nothing like autism when it comes to

> severity or sheer numbers diagnosed, it made me wonder... Most

people

> never heard of autism until Rain Man. Now, awareness is everywhere.

> Why oh why have most people never heard of apraxia? (And no,

> Radcliffe's " well, I couldn't tie my shoes " does NOT count in my

> eyes. Not to discount his ability to make people aware, but it's so

> much more than that).

>

> I guess this is more of a vent than anything, because I don't know

> where to go next with apraxia awareness... I've just discovered

they

> do make a ribbon for it (at apraxia-kids.org), but other than that

> and a few t-shirts, the word doesn't get out like it does with

other

> disorders. What is there to do? Hopefully one day it will get the

> attention and help it deserves.

>