Re: The PDD thing

[Guest guest]

In a message dated 9/20/2006 1:13:57 P.M. Eastern Standard Time,

duffey48@... writes:

The truth

is that while I would really LIKE it if my life were easier, I don't want

anyone else's life but my own.

I agree with you whole-heartedly. But I must admit I sure would like to see

Trisha completely toilet trained. We've regressed this past week with her

toilet training and I wonder if it's because she is trying to get a cold and

just is feeling off. She is also being more stubborn than usual as well.

Carol

Trishasmom

She isn't typical, She's Trisha!

[Guest guest]

Caroline and Maddie are vastly different from each other,

but Mom Caroline and I see each other as being in *similar* boats, if you

will. Yes, I have shared with my husband that sometimes I feel pain when I

see how Caroline can do things that Maddie can't (like go to restaurants,

stores, parties), but I know that Mom Caroline looks at me and thinks, " I

wish we

could potty train Caroline " or look at the physical things Maddie can do. I

think it's normal to get wistful sometimes. But my point is, we ALL have

our challenges. Hey, even if you have a super high functioning kid with DS

(I have many friends who do), they too have unique challenges. The truth

is that while I would really LIKE it if my life were easier, I don't want

anyone else's life but my own.

Donna

Yes, it is so easy to think the grass is greener. In elementary school

had a classmate who is also diagnosed with ds and asd. They both have blonde

hair, blue eyes and the same diagnoses. That is where any resemblence ends.

the friend is completely non-verbal and quite withdrawn from others. is

very social, very verbal though very perseverative and obsessive, and very

active.

The other mom and I were talking one day and she was saying how she wished

her son was more like mine since her son doesn't initiate activities or

interactions and was difficult to engage. I pointed out to her that her son was

able to ride the city bus with his classmates assisting him, he didn't hurt his

siblings, slept through the night and he could be in a reg ed classroom much

more than could. Did she still want what we had?

I ran into her last spring at the bank. Her son is still integrated at his

home high school with the same group of friends. He still lives at home and

when his parents want to go out his siblings (both close to his age) are

capable

of staying with him.

I also look at others at times and think - boy, I wish.... then I remind

myself.

Karyn

[Guest guest]

<<The truth

is that while I would really LIKE it if my life were easier, I don't want

anyone else's life but my own.>>

I agree Donna, I don't want anybody else's life but yours either LOL

Sherry

[Guest guest]

ROTFLOL Sherry! LOL You are funny! I always figured if I don't have

the very worst life in this world, I have no reason to complain (though I do

at times) LOL.

Gail :-)

The truth

is that while I would really LIKE it if my life were easier, I don't want

anyone else's life but my own.>>

I agree Donna, I don't want anybody else's life but yours either LOL

Sherry

[Guest guest]

In a message dated 9/20/2006 3:52:41 P.M. Eastern Standard Time,

gldcst@... writes:

I agree Donna, I don't want anybody else's life but yours either LOL

Sherry

ROTFLOL Sherry!!!!!! VERY VERY Funny!!!! Thanks for the laugh...;-)

Donna

[Guest guest]

In a message dated 9/20/2006 2:13:34 P.M. Eastern Standard Time,

Csvillars@... writes:

toilet training and I wonder if it's because she is trying to get a cold and

just is feeling off.

Carol,

When we did the Potty training with Maddie, it was beyond INTENSIVE!!!!!!

Life as we knew it went to the wayside....but we (uh hem, ME) was

committed. Her school was 100% behind us.....family was too, just not sure

they

expected it to be quite so hard (uh, YEA, THERE'S NO DINNER, I " VE BEEN BUSY).

We completely devoted TWO full months...attention ONLY to this....HEY, I

was thrilled because honestly, we thought it would take more. But a cold, a

cough, having their period, unsettled stomach...you name it. ALL

interferes.....BUT you just pick up where you left off. Carol, I think

Trisha can

do it!!!!! I dont' know her like you obviously, but you want it bad

enough. Allow for hurdles...they come. Just don't give up. K?

Donna

[Guest guest]

In a message dated 9/20/2006 9:29:38 P.M. Eastern Standard Time,

duffey48@... writes:

BUT you just pick up where you left off. Carol, I think Trisha can

do it!!!!! I dont' know her like you obviously, but you want it bad

enough. Allow for hurdles...they come. Just don't give up

Oh believe me, I have no intention of giving up, but I will admit I am

really getting tired, fourteen years is a long time. This week she has played

in

her BM 3 times and she hasn't been doing that for almost a year now. I found

out today that one of her favorite teachers has been out all last week so

I'm wondering if that combined with the cold and she had her period recently as

well if all those things just got to her. She flooded the bathroom night

before last and I had to remove the faucet handles to keep her from turning the

water on. It's like she doesn't know what to do with herself at times. Or

it could just be her exploring but either way it's driving me up the wall.

Tonight she whined a lot but at least she didn't do the poop or flood thing.

Last night she whined so bad I took her TV away until she would stop and

when she started whining tonight I turned it off and after a couple of times

doing that and the threat of removing it, she finally stopped whining. I think

she might just be going through " one of those days " week. :-)

Carol

Trishasmom

She isn't typical, She's Trisha!

[Guest guest]

In a message dated 9/20/2006 11:18:31 P.M. Eastern Standard Time,

Csvillars@... writes:

Last night she whined so bad I took her TV away until she would stop and

when she started whining tonight I turned it off and after a couple of times

doing that and the threat of removing it, she finally stopped whining. I

think

she might just be going through " one of those days " week. :-)

Yea, sounds hormonal. I'm seeing that in Maddie lately too. All I can

say is giant HUGS. The poop thing is the worst!!!!!

Donna

[Guest guest]

From what Dr. Capone told us, PDD-NOS or not, it is under the umbrella of

Autism-but because our kids' skills are so splintered between the DS and the

Autism, they cannot plain out say Autism.

Either way, Tori has Autism and that is how we live.

FWIW-

Liz

The PDD thing

This is an interesting topic. Carol, thanks for posting the Dr. Rimland

stuff. I do agree that it seems that docs use this label when they really

can't use the autism one. One of my best girlfriends has an 18 year old

who was dx'd with PDD a few years back. Caroline was convinced little

Caroline had autism, yet after I had Maddie (Caroline was born 5 years before

Maddie) and her autism surfaced, she wasn't so sure. She just knew SOMETHING

was not right; that Caroline was NOT like other kids with DS. *MY* opinion

is that Caroline has major sensory dysfunction and was left severely retarded

by an undx'd seizure disorder her first year of life. Getting the label

really just gave Mom validation, because it didn't effect how Caroline was

placed or educated. Caroline and Maddie are vastly different from each other,

but Mom Caroline and I see each other as being in *similar* boats, if you

will. Yes, I have shared with my husband that sometimes I feel pain when I

see how Caroline can do things that Maddie can't (like go to restaurants,

stores, parties), but I know that Mom Caroline looks at me and thinks, " I wish

we

could potty train Caroline " or look at the physical things Maddie can do. I

think it's normal to get wistful sometimes. But my point is, we ALL have

our challenges. Hey, even if you have a super high functioning kid with DS

(I have many friends who do), they too have unique challenges. The truth

is that while I would really LIKE it if my life were easier, I don't want

anyone else's life but my own.

Donna

[Guest guest]

A rose by anyother name is still a rose.....

But for autism there is more funding then there is for PDD-NOS. I fought

for years for the ASD title because it gives us more possibilities in school

and thur services outside of school. IE: OT/SLP for only 2 examples.

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To: < >

>Subject: Re: The PDD thing

>Date: Thu, 21 Sep 2006 07:38:36 -0400

>

>From what Dr. Capone told us, PDD-NOS or not, it is under the umbrella of

>Autism-but because our kids' skills are so splintered between the DS and

>the Autism, they cannot plain out say Autism.

>

>Either way, Tori has Autism and that is how we live.

>

>FWIW-

>

>Liz

> The PDD thing

>

>

> This is an interesting topic. Carol, thanks for posting the Dr. Rimland

> stuff. I do agree that it seems that docs use this label when they

>really

> can't use the autism one. One of my best girlfriends has an 18 year old

> who was dx'd with PDD a few years back. Caroline was convinced little

> Caroline had autism, yet after I had Maddie (Caroline was born 5 years

>before

> Maddie) and her autism surfaced, she wasn't so sure. She just knew

>SOMETHING

> was not right; that Caroline was NOT like other kids with DS. *MY*

>opinion

> is that Caroline has major sensory dysfunction and was left severely

>retarded

> by an undx'd seizure disorder her first year of life. Getting the label

> really just gave Mom validation, because it didn't effect how Caroline

>was

> placed or educated. Caroline and Maddie are vastly different from each

>other,

> but Mom Caroline and I see each other as being in *similar* boats, if

>you

> will. Yes, I have shared with my husband that sometimes I feel pain when

>I

> see how Caroline can do things that Maddie can't (like go to

>restaurants,

> stores, parties), but I know that Mom Caroline looks at me and thinks,

> " I wish we

> could potty train Caroline " or look at the physical things Maddie can

>do. I

> think it's normal to get wistful sometimes. But my point is, we ALL have

> our challenges. Hey, even if you have a super high functioning kid with

>DS

> (I have many friends who do), they too have unique challenges. The truth

> is that while I would really LIKE it if my life were easier, I don't

>want

> anyone else's life but my own.

> Donna

>

>