Re: Itits terms(aka laymans terms)

[Guest guest]

Trisha meets the DS-IV criteria for autism but the school says they are still

not sure because they think her cognitive delay has more to do with her signs

of autism than actually having autism. How do you seperate the two?

Carol

[Guest guest]

good question carol.....i am still trying to figure it out.......... lmao let

me know when you find out./

[Guest guest]

I've been trying to find out but I think it's some kind of educational top

secret program and I don't seem to have the right kind of security clearance

for it.

:-)

Carol

[Guest guest]

Joan,

Mark is going to see a new psychiatrist on the 16th. Let's see what

diagnosis he gives. We have been to UCLA and UCI. One of them said Mark has

ASD, the other did not. I am so confused. All I want is some meds that

work. He is a mad man again and is hard to handle. Wish up luck.

Jeannie

Mom to Mark and

[Guest guest]

what's PDD?

>From: " Lori " <hsmyangel@...>

>Reply-egroups

><egroups>

>Subject: Re: Itits terms(aka laymans terms)

>Date: Mon, 30 Oct 2000 11:59:16 -1000

>

>I had it explained this way. ASD is autism. PDD means they didn't quite

>meet all the requirements for officially being autistic, but more than

>enought to interfer with their life.

>

>

>I'd write more, but I have to get lunch....

>

>

>Loriann

>Wife to Dewight

>Mom to , 10 years, DS-ASD, ADHD, ODD

>And , 16 months and Strong Willed

>

>

>

[Guest guest]

carol,

can i join this top secret educational club too!!! please please

please.....hehehhe at least we know we are NOT alone....heheh

[Guest guest]

jeannie,

good luck with mark......this is all so very CONFUSING to me...... i am

reading getting more confused....... so then PDD is not part of the so called

autism family(joan-HELP)!!!! so basically i am screwed on getting my kid

services.....where do you draw the line...... the situation ashton is in

sucks the big one......she is in teh mimr program and her teacher sucks and

the aide sucks...... but the autism spec ed teacher is great, knows pecs and

get this, believes in sensory.....so what to do........take czre, laeah

[Guest guest]

sure! if I get in first I will sponsor you and if you get in first you can

sponsor me. lol

Carol

[Guest guest]

I'm not totally sure about this, so check into it, but what about OT, they do

sensory, and what about speech, they use pecs. Do you have a children's

hospital around you? Try having her evaluated there. Do you have a good

Ped? If so you might get him/her to write to the school. Also when all else

fails you have due process you can go to. I don't know where you live but

here we have an organization called The Rights of Virginians with

Disabilities and they will help either for free or according to your income.

Carol

[Guest guest]

yep like in alcoholics anonymous when you have sponsors......hehehehe but

this time i really need a manual.......lmao leah

[Guest guest]

Loriann,

I know this is off topic, but do you have a recipe for breadmachine bread for

the GF diet? My boss wants his wife to try it for their son.

TIA<

Jeannie

[Guest guest]

I had it explained this way. ASD is autism. PDD means they didn't quite meet

all the requirements for officially being autistic, but more than enought to

interfer with their life.

I'd write more, but I have to get lunch....

Loriann

Wife to Dewight

Mom to , 10 years, DS-ASD, ADHD, ODD

And , 16 months and Strong Willed

[Guest guest]

That I don't know. tested (with a tester that he trusted and got along

with) 69-70 IQ, so cognitive delay isn't much of an issue. His is more that

autism affects him.

Sorry I can't help, maybe someone else can?

Loriann

Wife to Dewight

Mom to , 10 years, DS-ASD, ADHD, ODD

And , 16 months and Strong Willed

[Guest guest]

At 05:34 PM 10/30/00 EST, you wrote:

>Trisha meets the DS-IV criteria for autism but the school says they are

still

>not sure because they think her cognitive delay has more to do with her

signs

>of autism than actually having autism. How do you seperate the two?

YOu don't. You accept that kids with autism can also have MR. If she fits

the criterion, then they can give her a label of " autistic spectrum

disorder " --not classic autism, not PDD, but within the broader spectrum of

autistic disorders. Have them read some recent literature......(prior to

1995, this was not generally accepted practice).

j

[Guest guest]

It was my understanding that PDD was still on the autism spectrum. I'm not

sure. I just know that they labeled classic autism.

Loriann

Wife to Dewight

Mom to , 10 years, DS-ASD, ADHD, ODD

And , 16 months and Strong Willed

[Guest guest]

At 04:49 PM 10/30/00 -1000, you wrote:

>It was my understanding that PDD was still on the autism spectrum. I'm

not sure. I just know that they labeled classic autism.

It is. PDD, Autism, and autistic spectrum disorder are all under the

umbrella of autism spectrum. This is sort of splittin hairs in my opinion

to worry about these pieces.

However, the main point is that you cannot separate MR and Autistic

spectrum. The Riverbend DS web page has a collection of articles that Glenn

Vatter gathered on the topic. There is also a nice one in the journal of

pediatrics titled something like, " If it looks like a Zebra, and acts like

a zebra... " which is an editorial I enjoyed...discussing that we need to

drop the archaic thought that MR and autism don't go together. heh heh.

j

[Guest guest]

carol,

what part of virginia do you live in??????/ i am in virginia too??????? DRVD

wouldn't really help us, they said our case wasnt their top priority at the

time...... i guess in this state its okay to predetermine placement based on

a label and not have general ed teachers at iep meetings....i did file

complaints to VDOe and the school was found guilty......hehe but that was six

months ago.....i am fixing to file three more complaints......heheheh leah

[Guest guest]

thanks joan for clarifying that...... i still feel lost...heeh i am on the

path of finding articles or " PROOF " to take to the iep meeting on

friday........ so i will start with riverbend......thanks leah

[Guest guest]

I live near Richmond. Here is a web site Trisha's doctor sent us to look at.

Here is a listing of a survey on special education services within VA

for the upcoming review of VDOE by the US Office of Special Education

Programs (OSEP).

Please take 15 minutes to include this in your computer time for today,

if you have not already.  Pass it on to whomever you think would be

interested as well.  The technical cutoff date is 11/01/00, but

responses throughout November will be considered. Thanks so much.

http://www.vipnet.org/vipnet/spedsurvey/cgi-bin/survey.cgi

All of our kids will benefit.

Harry

[Guest guest]

carol,

i was already on the FOCUS group for ocep for my area..... we met in

fredericksburg at the holiday inn and did some deep sensitive

discussions.....lmao some folks from william and mary were the leaders......

i only live an hour from richmond......what a small world.......

[Guest guest]

In a message dated 10/30/00 10:02:19 PM Eastern Standard Time,

jmedlen@... writes:

<<

It is. PDD, Autism, and autistic spectrum disorder are all under the

umbrella of autism spectrum. >>

While at Maddie's IEP on Monday, a young boy wandered in the room (his aide

was quite apologetic and right behind him) and smiled at all of us, shook

dh's hand and then started staring at the light, smiling. " light " , he said.

" chair " , he said, " book " , he said. All the time smiling away at us and

making wonderful eye contact. After he left, the principal of the school

said to us.... " See why they call it spectrum now? Thanks goodness they do " .

Donna

[Guest guest]

In a message dated 10/30/00 8:57:01 PM Eastern Standard Time,

vainclusion4all@... writes:

<<

jeannie,

good luck with mark......this is all so very CONFUSING to me...... i am

reading getting more confused....... so then PDD is not part of the so

called

autism family(joan-HELP)!!!! so basically i am screwed on getting my kid

services.....where do you draw the line...... the situation ashton is in

sucks the big one......she is in teh mimr program and her teacher sucks and

the aide sucks...... but the autism spec ed teacher is great, knows pecs and

get this, believes in sensory.....so what to do........take czre, laeah >>

Leah,

PDD (pervasive developmental disorder), from MY understanding anyway,

(Joan will correct me if I'm wrong.... is an umbrella label covering

numerous disorders with autism being under it. Many kids were getting PDD,

but parents were really unclear about what that meant because it was not real

specific. Then we had the PDD-NOS (pervasive developmental disorder, not

otherwise specified), which kind of REALLY threw parents and educators. Just

what the heck does THAT mean!!!! Then came the ASD dx which is another

umbrella. I like the word spectrum because it allows for all our kids to fit

under it. It takes into account that they are not all the same and just

because they have certain things in common, does not mean they do everything

the same. Sound like kids with Ds, doesn't it......they sure do some things

the same, but most things differently. Why should kids with DS/ASD, PDD, or

just plain old autism, be any different.

I was always under the impression, like Loriann, that if a kid got the PDD

label instead of ASD, that it meant they didn't quite fit ALL the criteria.

Joan, is that correct? I'm curious about what criteria pushes docs toward

ASD vs. PDD or just autism. But either way Leah, it should help with

services and get you the autistic support you want for Ashton.

Donna

[Guest guest]

Carol,

I think it has more to do with the ramifications of the diagnosis of autism

than whether or not they exhibit the signs of autism or actually have autism

when you are talking about the school system. My docs have no problem

calling it a dual dx of DS/ASD; our Regional Center has is listed that way as

well. However, the psychologist at the school that currently goes to

has a problem with putting it in his report. (It has been included in prior

IEPs from other schools though!) I am sure it has more to do with the

increase in the level of service that he would be entitled to rather than the

actual dx.

Terry

[Guest guest]

Jeannie,

Who did you see at UCI? We have seen Dr. Lott there (and through the

tele-medicene program at Kern Regional Center). He was the one who

originally confirmed the dual dx of DS/ASD for us. We now see Dr. Shah at

the Down Syndrome Clinic at UCLA. He has probably been more help to us (with

meds, particularly) than any other doc. He is very available when we have a

problem as well.

Terry

Mom to (13 yrs.)

[Guest guest]

Terry,

Mark only saw Dr. Lott one time for an initial evaluation. He also saw Dr.

Shah at UCLA. This also was a one time deal. I guess it was a probono

screening as we did not get a report from the outcome of the visit, we did

get a report from the team at UCI that evaluated Mark. I think CalOptima

paid for the UCI eval.

Jeannie

Mom to Mark and