Re: defintion of developmental disability

February 20, 2006

Chantelle-

You are absolutely right that the new definition is the best and what we

hope all systems will use. But in our case, the fact that these particular

folks were still thinking in terms of old ideas was to our benefit. That

was just in this one situation. I wouldn't want the old definition to be

perpetuated.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: defintion of developmental disability

Well i somewhat dissagree. Depends on the sevarity of charge. for a

mild charger the letters really dont help too much.

February 20, 2006

Chantelle-

This is really helpful clarification! I'm not sure how it compares to the

situation in IL, but I'll be checking into it further.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: defintion of developmental disability

maybe see

> that this new definition does not exclude people with CHARGE. Is

CHARGE

> considered a developmental disability in other states? Does

anyone know?

> What is the obstacle to people getting services?

My biggest obstical is getting people to see how the combined

imparments affect my life.

February 20, 2006

Chantelle-

This is really helpful clarification! I'm not sure how it compares to the

situation in IL, but I'll be checking into it further.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: defintion of developmental disability

maybe see

> that this new definition does not exclude people with CHARGE. Is

CHARGE

> considered a developmental disability in other states? Does

anyone know?

> What is the obstacle to people getting services?

My biggest obstical is getting people to see how the combined

imparments affect my life.

February 20, 2006

Ellen-

I am saving your thoughts will all of the others as I try to make sense out

of this and see what we can change in IL!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

February 20, 2006

Ellen-

I am saving your thoughts will all of the others as I try to make sense out

of this and see what we can change in IL!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

March 12, 2006

,

I am just reading these post now but I have to warn you that the term

Developmental Delay can be misunderstood even by specialists and is now the

National

politically correct term for the definition of Mental Retardation. Careful,

careful, careful. It is the definition and term that fits Patty but the word

Delay is what has never been understood. It isn't where Patty performs that is

her Potential. Her potential has been limited due to many reasons-called

CHARGE. Delay is right in that often learning comes, just delayed. Know what I

mean? That's why Deaf/Blind fits her and helps with the term developmentally

DELAYED.

Guess I have to go read the rest of these posts to know what's going on but

please take my warning. Once you pigeon hole your child into a definition it

is a battle to get that definition off if it doesn't truly define your child.

Services can then be limited or even denied. That's another important reason

many children who have CHARGE should not have the definition of Autism. They

are totally different things although the services can be close. But then

again, that term fits many children who have CHARGE. It's all so very

complicated.

This is all so confusing as well because we have to truly acknowledge our

children's individual limitations. For example, Patty tests very low for math.

That is the way it is. So making her do it is plain old torture. We fought

them trying to continually teach her mental math because that was ridiculous.

She didn't have that ability. She didn't attain that goal for a few years so I

knew we then had to redefine the goal. She is frustrated then and shuts down

and can't do a thing. NOTHING. But give her a calculator and she has the

ability to modify the world to be able to perform functions and tasks. She

passed algebra (which is language based) with a calculator under the duress of

the

Special educators fighting against her being in that class. The regular

educator taught her APPROPRIATELY and Patty got a C- for the year. We were

overjoyed! And they said it couldn't be done. You should have seen the joy on

that

teachers face. You should have seen the joy on Patty's!

True teachers teach all children. We were lucky to have gifted " regular "

educators in Patty's life. We just needed to support those teachers. Very

often

we were told by SPED staff that Patty exceeded her potential. Knowing that

to be impossible is what gave us the passion to continue forward. And she

continues to be able to learn. Don't we all?!

Like I said, be careful with the terms as they are often misjudged and

misused.

Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

March 12, 2006

Bonnie-

I know the pitfalls of labels. The DD definition in IL is what gets people

services. They are working hard to modify that definition to include not

only MR, but also Autism, and other conditions that adversely affect 3 or

more life areas. It is very confusing when DD is interchanged with MR. And

it's extremely frustrating when services and supports are available to only

people who fit that definition. There are many many folks out there with

CP, CHARGE, and a host of other things with or without formal dx's that

require significant supports but that don't qualify as MR. Argh.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

March 12, 2006