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

[Guest guest]

i think i would have smart mouthed the doc, once i had an older doc ask if

he was a mongoloid, said yes he has down syndrome and left and rescheduled

an appt for when his reg ped was in. shawna.

>From: carole any <carole9545@...>

>Reply-egroups

>egroups

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

>Date: Sun, 7 Jan 2001 10:57:47 -0800 (PST)

>

>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]

In a message dated 1/8/01 10:45:25 AM Eastern Standard Time, duffey48@...

writes:

<< 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 >>

Donna,

That's great that Maddie's aide loves her like that! Have a question. Do

downs kids spin things and dangle things like our kids do? Is that the

autism or the downs? Do all downs kids communicate? Do they all know how to

" play " ? Can you separate the downs from the autism in our kids, or are they

so intertwined that you can't tell which is which? Do downs kids have a

skill and then lose it? Guess that was more than " a " question! LOL I have

a zillion questions since I observed those two downs kids and I wonder if

they were very advanced or just *normal* downs. Seth was just so different

from them. I am one of the few who was relieved to get the autism diagnosis.

It answered so many questions about why 2 years of therapy got him nowhere.

So I don't think I am not accepting that there is something more wrong with

Seth than just the downs. It's just that he acts so different from all the

autistic kids I've seen. But, then again, none of them have downs too.

Okay, my head is spinning from all this thinking so I am going to go *dangle*

with Seth! LOL

Gail

[Guest guest]

Gail,

Um the scanner isn't working at the moment when it finally does then I'll

scan the stuff. If your going to the library sometime then I'll tell you

the book. The book is " The Developing Person Through Childhood " Second

edition by Kathleen Stassen Berger. The pages that have about ADHd is pages

350 to 352, and from page 357 to 363. In the book it also has some pages

about autism if anyone is interesed, that is on pages352 to 355. Again I'll

scan these pages once my scanner is up.

>

><< 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]

In a message dated 1/8/01 8:28:12 PM Eastern Standard Time,

smilinggail@... writes:

<< That's great that Maddie's aide loves her like that! Have a question. Do

downs kids spin things and dangle things like our kids do? Is that the

autism or the downs? Do all downs kids communicate? Do they all know how

to

" play " ? Can you separate the downs from the autism in our kids, or are they

so intertwined that you can't tell which is which? Do downs kids have a

skill and then lose it? >>

Gail,

My experience with kids with DS, and I've seen many high-functioning

children/adults through our local support group, is that often they still do

the self-stim behaviors. A friend's daughter is 17 and very bright. Kate

will sit with her head down til her hair falls on the sides, and whack at the

hair with her fingers. BUT, her mom says.. " Stop Kate " and Kate stops. There

doesn't seem to be a compulsive need. Most of them have good communication

skills, verbal or sign or otherwise. Also, kids with DS make good playmates.

That's not to say that there are behavior issues for many kids. But hey,

there are with kids without DS too. And just like Our kids with DS/ASD, I

believe there's always a reason behind the behavior, whether it be because of

lack of communication, chemical, sensory and/or other deficits.

With Maddie, Gail, I can see that the two are intertwined, but it's the

autism traits that cause us the most difficulty. Some people say that the

running away is a DS trait, but I know lots of kids with autism who do that

as well. I also know a child with autism who will run up and hug me and he

makes better eye contact than Maddie. But his social behavior is very

inappropriate. So's Maddie's, but she totally lacks that violent piece that

he has.

Also, the other big piece that shouts autism is the decline or losing of

skills. This is not typical at all in DS. Kids with DS may stop doing

something while they are working on another thing, but it didn't go away.

That's true of ALL kids as well. With Maddie, the skills dropped off

literally week after week, so brutally visible to us, til there was nothing

left but self-stim behaviors. Eye contact was the last to go. She was

starting to talk (saying mom mom), waving bye bye, smiling and playful.

Then came the year from hell. Sometimes, I'm amazed I lived through it!!

Really. The director of her EI program later said to me that she didn't know

of any other family that could have survived that. She was handing me a

compliment, but instead it felt like a slap in the face. I told her that as

a family, we are always 1000% committed to Maddie, just like we are to each

other and that there was never any other option but to survive.

The THREE major components that make the autism stand apart are the lack of

social skills (although kids with DS/ASD typically do better in this area,

but not Maddie), communication, and the repetitive behaviors.

MY, Gail, this sure was long!! Sorry, I guess I got gabby!!! LOL

Donna (home nursing a sick Maddie. She didn't go to sleep til 4:30 last

night and then my 8 yo comes in saying she had a nightmare-----I NEED SLEEP)

[Guest guest]

I have a zillion questions !! - well now perhaps you have only a

(zillion - 6).

Hi , What is one zillion minus six? LOL That's about what I have left

anyway! LOL

First I have to say that I love reading all your posts! Knowledge and

humor...you are blessed, and you share, so we are blessed too! LOL

Thanks for all the info. You know , there are no down syndrome groups

here. Just parents support groups which I have tried, but have nothing in

common with. Have also tried the autism parents support group and don't fit

so well their either. I think mostly because all they do is whine. LOL

You sure gave me the answers I wanted to hear! I wanted to know if you could

separate the two to be able to get the answers to the other questions. I

guess listening to all the reports and *experts* I think that I should be

upset or think it is the end of the world that Seth is autistic, but I don't

think it is a big deal. Now, if you want to talk PICA!!! LOL That is

harder than everything put together. I could be a MAJOR whiner at one of

those support groups! LOL With all the IEP stuff going on, I guess it just

has my mind working overtime and causing me to look for all the bad in Seth,

that everyone else seems to notice. Thanks for responding .

Gail

[Guest guest]

Gail ...... Can't resist trying to answer the questions in your last

mail Digest 603 /17 ... it seems to me that in that great wide country

of yours you don't come in contact with a lot of DS children to make

comparisions. Ignacio, our son with DS/ASD, as well as going to an

inclusion school, also goes to a local asociation of DS children for

futher therapy. There are 26 DS children in the group .... Ignacio

CLEARLY stands out as the only DS/ASD amongst them. It took me some

time to note that his relative *backwardness* couldn't only be

attributed to the fact that our family has two languages, spanish y

english .

When it finally dawned on me I could see clearly four main things

different with Ignacio compared with the rest ....... Firstly almost

total lack of speech ... and more, his LOSS of aquired baby words.

Secondly unsocialabilty, all the other children in the group are social

between each other and the parents, giving hugs and kisses and with full

eye contact. Ignacio just doesn't want to know anyone or look at

anyone Thirdly playing with toys ... Ignacio doesn't *play*, he

lines things up, the others have dollies and cars -- with the

appropriate noises. Lastly Ignacio has self stimming actions such as

touching peoples hair and the edges of their fingernails -- he also

grinds his teeth. Only two of the other 26 show that - one with the

nails the other with the teeth.

Once established in MY mind that he was DS/ASD I naturally began to

research in the WEB and came across the GFCF Diet with it's yet *quasi*

(sorry j) ideas and after convincing my wife we put him on it 6 months

ago after doing the ATEC online test. The only things I can really

confirm are that his eye contact and attencion have improved measurably

and he does not self stim with nails or hair although he does still nash

his teeth !! Socialbility has also improved and he will now give

kisses to all on demand and to some without asking !! Speech is still

lacking (although this doesn't worry me ! just bought PECS) and still

has no meaningful play.

Now to your questions with *my* answers

Do downs kids spin things and dangle things like our kids do? I would

say NO.

Is that the autism or the downs? I would say the autism.

Do all downs kids communicate? I would say YES to varing degrees --

but they ALL make the atempt.

Do they all know how to " play " ? I would say YES, with the girls even

playing together interactivly.

Can you separate the downs from the autism in our kids - Why do you want

to ??

Do downs kids have a skill and then lose it ? I would say that once

the skill is well in their heads NO, but it takes a lot more time to

get it in there ! The main skill that the ASD's seem to lose is their

speech.

I have a zillion questions !! - well now perhaps you have only a

(zillion - 6).

[Guest guest]

smilinggail@...,

>

I don't know if all downs kids spin things and dangle things like

autism kids do. I know a down kid I think she's in middle school- I can

give you her parent's e-mail if you want to. Yes this middle school that

has downs, she can communicate. I think they know how to play but I'm just

guessing. I don't know if you can separate the downs from the autistic

kids. I haven't been around down kids, I just saw the down middle schooled,

because she was also hearing impaired and we were on a field trip, and I had

to watch her. I don't know if downs kids have a skill then they lose it.

From,

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[Guest guest]

From what ive seen, of the kids in nathan's school, they only have ds, and

none of them dangle things as nathan does, they are just a little ahead of

him in their education,not too far, as for the memory thing it depends on

each child separately. shawna.

>From: " Dunning " <brink_00@...>

>Reply-egroups

>egroups

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

>Date: Thu, 11 Jan 2001 19:23:34 -0600

>

>

>

>smilinggail@...,

> >

> I don't know if all downs kids spin things and dangle things like

>autism kids do. I know a down kid I think she's in middle school- I can

>give you her parent's e-mail if you want to. Yes this middle school that

>has downs, she can communicate. I think they know how to play but I'm just

>guessing. I don't know if you can separate the downs from the autistic

>kids. I haven't been around down kids, I just saw the down middle

>schooled,

>because she was also hearing impaired and we were on a field trip, and I

>had

>to watch her. I don't know if downs kids have a skill then they lose it.

>

>From,

>

>

>

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>

>

>

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[Guest guest]

> 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

Joan,

Or, my personal, " You know, Mrs. ____________, We are the experts here! "

S

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