Re: labels and jargon and silly word games...

[Guest guest]

In a message dated 1/7/01 11:37:18 AM Eastern Standard Time,

jmedlen@... writes:

<< YOu know, to get a point across at school, I " ve started saying Andy has

autism and then throwing in the down syndrome on the side, if at all. I

want them to address his autism with approrpiatre strategies, so I act like

he doesn't have DS. I'm sure I " ll hear I'm in denial again soon.......

j >>

That's funny Joan. I don't notice that Seth has downs anymore. But I am not

in denial, I dealt with that at birth and it hasn't been a problem. My

daughter says she looks at him and sees downs. I look at him and see---cute,

autism and then downs. The downs seems to be way down on the list of Seth's

*problems*. Actually, I don't know that much about downs. I just never

thought of it as anything but *the look* and being a little slower. Seth

does to seem to be more social than the kids in his class, and I attribute

that to the downs. Maybe the downs plays a larger part and that is why I

don't think he is autistic? Although he has almost all of the criteria for

autism, he doesn't act like the kids in his class. Does everyone else see

that?

Gail

[Guest guest]

In a message dated 1/7/01 11:37:23 AM Eastern Standard Time,

jmedlen@... writes:

>

> YOu know, to get a point across at school, I " ve started saying Andy has

> autism and then throwing in the down syndrome on the side, if at all. I

> want them to address his autism with approrpiatre strategies, so I act like

> he doesn't have DS. I'm sure I " ll hear I'm in denial again soon.......

>

> j

>

>

Hi Joan,

I felt the same way at first, but then I thought that 's main problem IS

the autism. It makes his life so much more difficult than just the plain old

MR with the DS would. After many years I feel that I may finally understand

DS. However, autism is such a huge disorder and I feel that I will never get

to the point if understanding as I am with DS. Hope that all makes sense.

Judy

[Guest guest]

In a message dated 1/7/01 12:21:12 PM Eastern Standard Time,

ckc@... writes:

<< I just know that I often have to remind myself that Ian has autism,

but I never have to remind myself that he has Down syndrome.

CK, >>

LOL CK

I'm just the opposite. Isn't it strange how we see our kids? I have always

wanted to see Seth through a stranger's eyes. I may not like what they were

seeing though! LOL

Gail

[Guest guest]

lololol joan!! the school psych said that to me!!! lolol that did i forget

she has down syndrome, not just pdd......ehehehehh

>From: " Joan E. Guthrie Medlen " <jmedlen@...>

>Reply-egroups

>egroups

>Subject: labels and jargon and silly word games...

>Date: Sun, 07 Jan 2001 08:35:58 -0800

>

>At 11:16 AM 1/7/01 EST, you wrote:

> >ASD , is autistic spectrum disorder. On the DS listserv, however,

> >I've taken to writing the word autism outright because many on the list

>were

> >reading the asd to mean the heart condition.

> >Donna

>

>YOu know, to get a point across at school, I " ve started saying Andy has

>autism and then throwing in the down syndrome on the side, if at all. I

>want them to address his autism with approrpiatre strategies, so I act like

>he doesn't have DS. I'm sure I " ll hear I'm in denial again soon.......

>

>j

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[Guest guest]

In a message dated 1/7/01 4:54:53 PM Eastern Standard Time,

brink_00@... writes:

<< In my book I think I'm not positivlly sure that their's some information

on

downs. I can e-mail you some information on downs if your interested.

>>

Thanks , I would like that!

Gail

[Guest guest]

The crisis counselor we met with over the summer told us that the best thing

we could do for ourselves and Ian was to think of the autism first, and then

the Down syndrome. It was the autism that was causing us all the problems,

and that it was mitigated by the Down syndrome, which made us lucky, in a

way. Ian would have been a lot worse with just the autism. So she said.

I do know that the behaviors that cause us the most grief are those related

to the autism, but I still don't think in that hierarchy. I don't

necessarily see the Down syndrome first, but perhaps because it's been 12

years with Down syndrome and fewer with the autism label, I'm just more

accustomed to thinking of it before the autism. Is that denial? I don't

know. I just know that I often have to remind myself that Ian has autism,

but I never have to remind myself that he has Down syndrome.

CK,

Mom to Ian (2/89),

(9/90),

and Rose (6/94)

[Guest guest]

At 11:53 AM 1/7/01 -0500, you wrote:

>lololol joan!! the school psych said that to me!!! lolol that did i forget

>she has down syndrome, not just pdd......ehehehehh

Yeah,w ell, you know, you might miss all those common ds characteristics

afterall.......and maybe the doc forgot to tell you when she was born?

[Guest guest]

Once when my grandson was in the er for croup attack

th e dr in there looked at us and said did you know he

has d.s.???we smiled politely and said yes and did not

dare look at each other but later in the car said we

should have snapped our fingers and said 'Well d***

thats why he didnot walk til he was

two!!!sigh....Carole

--- " Joan E. Guthrie Medlen " <jmedlen@...>

wrote:

> At 11:53 AM 1/7/01 -0500, you wrote:

> >lololol joan!! the school psych said that to me!!!

> lolol that did i forget

> >she has down syndrome, not just pdd......ehehehehh

>

> Yeah,w ell, you know, you might miss all those

> common ds characteristics

> afterall.......and maybe the doc forgot to tell you

> when she was born?

>

__________________________________________________

[Guest guest]

Joan,

Some years back, we were doing the pre-op thing at CHLA, answering questions

about 's medical history. The doc was asking me about his various

diagnoses...I had mentioned autism, pseudo-obstruction of the small bowel,

seizure disorder,etc. The doc looked at me and said... " AND..? " I just

looked at him thinking AND what? What did I forget? He just kept looking at

me with THAT LOOK....and finally, I was frustrated and said " and he, what,

has Down Syndrome?! " The doc looked at me and said, " I just wanted to make

sure you knew. " LMAO!!!!

Terry

Mom to , 13 yrs. ds/autism

[Guest guest]

Gail,

Although obviously has Down Syndrome, we have always thought that the

autism was/is his biggest challenge. does have definite autistic

characteristics and mannerisms. In that way, he does act like the other kids

with autism in his class. He is not socialable so far as interacting with

anyone really, except that he does like to " cuddle " . That's not to say that

while he is perfectly content sitting with you and cuddling, he won't reach

over and pinch the crap out of you or bite you! Wakes you right up! LOL

All in all, I would have to say that he acts more like a kid with autism than

Down Syndrome.

Terry

Mom to , 13 yrs.

[Guest guest]

LOL Carole! I can relate!

Terry

[Guest guest]

As a Mom, I don't even consider the labels. I just see " Andy. " Honest.

Maybe in my definition of " Andy " are some of the characteristics of autism

and ds, Id on't know. It just doesn't ruffle my feathers one way or another.

I find, however, that folks at school are very concerned that I know and

understand his " labels. " Whatever. What matters to me is if the OUTCOME of

his education is EFFECTIVE. Since the answer is " no, " then I get to point

out how he does have autism, so where are the common supports??

blech.

j

[Guest guest]

In my book I think I'm not positivlly sure that their's some information on

downs. I can e-mail you some information on downs if your interested.

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[Guest guest]

In a message dated 1/7/01 9:25:30 PM Eastern Standard Time,

Imaddenmom@... writes:

<< Gail,

Although obviously has Down Syndrome, we have always thought that

the

autism was/is his biggest challenge. does have definite autistic

characteristics and mannerisms. In that way, he does act like the other

kids

with autism in his class. He is not socialable so far as interacting with

anyone really, except that he does like to " cuddle " . That's not to say that

while he is perfectly content sitting with you and cuddling, he won't reach

over and pinch the crap out of you or bite you! Wakes you right up! LOL

All in all, I would have to say that he acts more like a kid with autism

than

Down Syndrome.

Terry

Mom to , 13 yrs. >>

Terry,

Sounds like Seth. Seth doesn't interact with kids at school. He does pretty

good one on one if it is an adult he knows that is playing song games with

him. He will look at people and maybe touch them. That's more than the kids

in his class will do. LOL Like he will bite, pinch or pull your

nostrils while cuddling, when you least expect it! LOL Reminds me of when

my daughter was little she was laying on my stomach rubbing my face so

gently, looking at me so lovingly. LOL I though she was going to say *I

love you* or *your beautiful*. LOL She so softly said *you uggy mommy* LOL

Kind of the same shock when Seth pokes me in the eye with his thumb, right

out of the blue!!!!! I didn't realize how *autistic* Seth was until I

recently observed 2 five year old downs kids. They were so different from

Seth! He doesn't act like them, and he doesn't act like his autistic

classmates either. Guess that's good because I can't compare him to anyone,

so I can't be disappointed!

Gail

[Guest guest]

In a message dated 1/7/01 9:57:13 PM Eastern Standard Time,

carole9545@... writes:

<< He just kept looking at

> me with THAT LOOK....and finally, I was frustrated

> and said " and he, what,

> has Down Syndrome?! " The doc looked at me and said,

> " I just wanted to make

> sure you knew. " LMAO!!!!

> Terry

> Mom to , 13 yrs. ds/autism >>

Had that happen a lot with Seth too! LOL They seem so nervous don't they!

LOL I usually don't say it because that is something they can see. Seth has

very mild downs features I think, because some people don't realize he has

it. This is another post I didn't get. LOL Just got the reply.

Gail

[Guest guest]

alright, later on I'll e-mail you some, when I'm in the mood to get my book.

>From: smilinggail@...

>Reply-egroups

>egroups

>Subject: Re: labels and jargon and silly word games...

>Date: Sun, 7 Jan 2001 17:04:30 EST

>

>In a message dated 1/7/01 4:54:53 PM Eastern Standard Time,

>brink_00@... writes:

>

><< In my book I think I'm not positivlly sure that their's some information

>on

> downs. I can e-mail you some information on downs if your interested.

>

> >>

>

>Thanks , I would like that!

>Gail

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[Guest guest]

alright, later on I'll e-mail you some, when I'm in the mood to get my book.

>From: smilinggail@...

>Reply-egroups

>egroups

>Subject: Re: labels and jargon and silly word games...

>Date: Sun, 7 Jan 2001 17:04:30 EST

>

>In a message dated 1/7/01 4:54:53 PM Eastern Standard Time,

>brink_00@... writes:

>

><< In my book I think I'm not positivlly sure that their's some information

>on

> downs. I can e-mail you some information on downs if your interested.

>

> >>

>

>Thanks , I would like that!

>Gail

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[Guest guest]

alright, later on I'll e-mail you some, when I'm in the mood to get my book.

>From: smilinggail@...

>Reply-egroups

>egroups

>Subject: Re: labels and jargon and silly word games...

>Date: Sun, 7 Jan 2001 17:04:30 EST

>

>In a message dated 1/7/01 4:54:53 PM Eastern Standard Time,

>brink_00@... writes:

>

><< In my book I think I'm not positivlly sure that their's some information

>on

> downs. I can e-mail you some information on downs if your interested.

>

> >>

>

>Thanks , I would like that!

>Gail

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[Guest guest]

alright, later on I'll e-mail you some, when I'm in the mood to get my book.

>From: smilinggail@...

>Reply-egroups

>egroups

>Subject: Re: labels and jargon and silly word games...

>Date: Sun, 7 Jan 2001 17:04:30 EST

>

>In a message dated 1/7/01 4:54:53 PM Eastern Standard Time,

>brink_00@... writes:

>

><< In my book I think I'm not positivlly sure that their's some information

>on

> downs. I can e-mail you some information on downs if your interested.

>

> >>

>

>Thanks , I would like that!

>Gail

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[Guest guest]

Hi Terry ,Maybe they are just overworked???????NAH!!

--- Imaddenmom@... wrote: Carole

> Joan,

> Some years back, we were doing the pre-op thing at

> CHLA, answering questions

> about 's medical history. The doc was asking

> me about his various

> diagnoses...I had mentioned autism,

> pseudo-obstruction of the small bowel,

> seizure disorder,etc. The doc looked at me and

> said... " AND..? " I just

> looked at him thinking AND what? What did I forget?

> He just kept looking at

> me with THAT LOOK....and finally, I was frustrated

> and said " and he, what,

> has Down Syndrome?! " The doc looked at me and said,

> " I just wanted to make

> sure you knew. " LMAO!!!!

> Terry

> Mom to , 13 yrs. ds/autism

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

In a message dated 1/7/01 12:01:16 PM Eastern Standard Time,

smilinggail@... writes:

<< Maybe the downs plays a larger part and that is why I

don't think he is autistic? Although he has almost all of the criteria for

autism, he doesn't act like the kids in his class. Does everyone else see

that? >>

Gail,

Maddie is very autistic. She also is lacking the social aspect that a lot

of kids with DS have. So I mostly see autism. Never do we doubt it.

However, there are a couple kids in her class with just autism, and Maddie is

NOTHING like them. I wouldn't say she's more social, because she's actually

less interested in people than they are. But, once you connect with her,

she's WAY more loving. I guess that's the big difference with Maddie. Her

teacher told me that Maddie's aide adores her and that " Carol loves her job,

but is not real free with hugs and kisses......except with Maddie, of

course.. " LOL

Donna

[Guest guest]

In a message dated 1/7/01 12:21:10 PM Eastern Standard Time,

ckc@... writes:

<< It was the autism that was causing us all the problems,

and that it was mitigated by the Down syndrome, which made us lucky, in a

way. Ian would have been a lot worse with just the autism. So she said. >>

Yes. I have to be honest and say that I'm glad that Maddie has DS and

autism, as opposed to just autism. Sounds weird, but it's true.

Donna

[Guest guest]

Gail,

Our kids are so fun! LOL I was talking to my daughter when I was reading

your post....we both had a really good laugh! It really helps to have a

sense of humor through all this, don't you think! LOL

Terry

[Guest guest]

donna,

i totally agree.....because ashton has ds too, she is so very social and

into people!!! i am afraid if she just pdd, that she would nt be so loving

and happy...... i'd rather have both than nothing or either one........

>From: duffey48@...

>Reply-egroups

>egroups

>Subject: Re: labels and jargon and silly word games...

>Date: Mon, 8 Jan 2001 10:43:07 EST

>

>In a message dated 1/7/01 12:21:10 PM Eastern Standard Time,

>ckc@... writes:

>

><< It was the autism that was causing us all the problems,

> and that it was mitigated by the Down syndrome, which made us lucky, in a

> way. Ian would have been a lot worse with just the autism. So she said.

> >>

>

>Yes. I have to be honest and say that I'm glad that Maddie has DS and

>autism, as opposed to just autism. Sounds weird, but it's true.

>Donna

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[Guest guest]

In a message dated 1/8/01 3:13:24 PM Eastern Standard Time,

Imaddenmom@... writes:

<< Gail,

Our kids are so fun! LOL I was talking to my daughter when I was reading

your post....we both had a really good laugh! It really helps to have a

sense of humor through all this, don't you think! LOL

Terry >>

Terry,

Humor, faith, love and lots of sleep! Glad I could bring a little humor to

yours and your daughters day Terry! LOL

Gail