Hi New Member

Posted October 4, 2003 · October 4, 2003

Annie,

Welcome to the list. Try the list on . there are many

families with the dx, including me. Actually JJ is autism-ds

since he is much more effected by the autism. JJ has no speech, he just

hums a lot :-)

On Saturday, October 4, 2003, at 12:16 PM, annie523q wrote:

>

Posted October 4, 2003 · October 4, 2003

Well, welcome to the list and disregard that last message. Must be a

mind fart of something.

On Saturday, October 4, 2003, at 12:16 PM, annie523q wrote:

> Hello,

> My name is Annie. I have 2 boys who is 8 1/2 yrs old and Zack

> who is 5. My son has DS and was diagnosed with PDD-NOS about

> 2 years ago. I have always known that was different from

> other kids with DS. About 2 yrs ago I found this atricle online about

> DS-ASD and was shocked they were describing my son. I brought him in

> to the DS clinic and he was DX with PDD. Some days I really don't

> think he has it that maybe he is just " lower functioning " (sorry if

> that word bothers some)and I really haven't seen documents on what

> is " normal " behavior for children with DS. But then I will see a

> child with DS his age or younger and I see the difference sort of

> like that little spark is missing from 's eye if that makes

> sense. It's just hard some days. It's great to know that there are

> others out there going through this as well. I have a few questions

> if you don't mind,

> I was curious if anyones child has the PDD dx?

> I was also curious as to what some of your childrens behaviors are or

> as I like to call them " quirks "

> It seems like goes through stages one week he is obsessed

> with watching doors close, to being fixated on his shoelaces, to

> dangling.

> Do you try to stop these behaviors like the dangling? Because that is

> one quirk that drives me nuts!!

> Also how is your childrens speech?

> s talks but says alot of phrases that he hears ALOT. But I am

> so thankful that he talks no matter what he says!!

> Also what type of school setting is your child in?

> Thanks! sorry for all the questions!

> Annie

>

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Posted October 4, 2003 · October 4, 2003

Hi Annie,

Glad you found us! My daughter is 6 1/2 and she was diagnosed with Autism

about a year and a half ago. She likes wiggly things. She has no speech except

for once a year we hear a word, clear as a bell, very appropriately and then

it's gone.

She is in a public school in a program for the more severely disabled and

her class is 1st through 3rd grade - there are 7 in there with a teacher and 2

aides. There are a lot of people here with a lot of experience so don't

hesitate to ask your questions. If nobody knows the answer we can all just

wonder

together!! : )

Blessings,

a

Mom to Drew 12 Tourettes Syndrome and Obsessive Compulsive disorder,

Marisa 8 Middle-Child Syndrome, Hannah 6 Down Syndrome and Autism

Posted October 5, 2003 · October 5, 2003

In a message dated 10/5/2003 10:02:49 AM Central Daylight Time,

karriemom@... writes:

> We live in IL, also. Where about are you? We live about 20 minutes from St.

> Louis.

Sue I have to laugh when you say 20 minutes from St. Louis because that is

how I talk about distances. My husband Andy is always teasing me about minutes,

he thinks it should be stated in miles, a guy thing I guess. Good luck on

the trip tom. I also am in IL but near Chicago.

Louise Mom to 41 DS/HI, and new DX autism (but not everyone is in

agreement with the new DX)

Posted October 5, 2003 · October 5, 2003

Thanks for the welcomes!!

I have to say it's great to have a place where you can relate. I

visit other DS sites and have a fantastic support group in our area

but often I feel left out or really can't relate.

We live in illinois. Just last week we switched 's school. We

looked at an MI self contained program. And liked it. He just started

last week and did GREAT! Which shocked me he does not do good with

change.

About speech it's funny because didn't say ANYTHING until

last year(7 yrs old). Like I said alot of it is phrases he hears

often like Wait a sec, Knock it off (lol) but does not answer

questions. For a while he could answer Yes no questions but he is not

doing that anymore:( But I will take what I can get!

also has sensory issues. He doesn't mind loud noises to him

the louder the better. But if he gets one drip of water on his

clothes they are off! He isn't a big fan of clothing anyway he gets

un dressed as soon as he walks through the door after school.

Well sorry I am rambling here!! Anyway Thanks!

Annie

Posted October 5, 2003 · October 5, 2003

Hi Annie!!

Welcome! This is a fantastic list!! I always read every message, but seldom

seem to ever get around to answering/commenting

We live in IL, also. Where about are you? We live about 20 minutes from St.

Louis. If you need me, I'm here!!

Sue mom to Kate 14 and Karrie 7 w/ds and ??

(Kate and I are going to one of the country's most haunted houses today,

before our trip to Kennedy Krieger tomorrow!!

Posted October 5, 2003 · October 5, 2003

Hi Annie,

My daughter also has the dx of PDD-NOS. I think the diagnosis terms are

somewhat confusing. As it was explained to me, under the new thinking, PDD

falls into the range of the autistic spectrum but it¹s usually reserved for

kids that do not show all of behaviors or symptoms. But in some parts of the

country, it is no longer used and all if the child displays up to 50% of the

behaviors, the dx is ASD. I¹m still confused. The school district

classifies my child as DS-PDD but on most IEP¹s etc, it says she has autism

and DS.

has always used dangling objects as self stim and it has always driven

me nuts because it makes her stand out in public. She uses it as a calming

tool. Whenever we have tried to take away her stim objects, she has anxiety

and behavioral issues arise. She has now fixed on clean fringed dishtowels

wrapped around toothbrushes. (She will take great care to wrap it just so.)

Last year, her new teacher suggested that instead of fighting it, we let her

take control. It worked. She learned when it¹s okay to stim and when it¹s

not. At school, she now automatically puts down the towel when it¹s time for

work because she knows it won¹t be snatched away. She puts it in her

backpack for travel or when they go swimming/bowling, etc. By giving her

ownership and responsibility for it, she has decreased her self stim

dramatically.

My daughter has very limited speech and communicates with a Tech Speak and a

communication board. She is in a self-contained life skills classroom. Her

teacher is phenomenal and the class is ³bilingual²- all communication is

both visual (Boardmaker) and verbal. Last Friday, at the coffee shop her

class runs for the school and community center nearby, communicated

with customers all on her own with her comm. aids. She sold cookies she made

the day before. She even remembered to push the Thank you and Please come

again buttons at the appropriate time. It was a good day- and the stim rag

never appeared- it was left in her backpack all day long.

I think it¹s important for me to remember that most communication is really

not the words that are said. Things like body language, tone, expressions,

gestures all play a major role. Turn the sound off the tv and see how easy

it is to figure out what is going on. It¹s also been helpful to me to

readjust my thinking as to what constitutes intrinsic human value.

will probably never read great literature or write Master¹s thesis, but she

does have things she loves to do and talents to nurture. We are now

focusing on them and releasing the academic goals we once set. She is now

making big progress in other areas and she is so much happier.

Therese (Mom to 12 yo DS-PDD, 16 yo And 19 yo)

theOn 10/4/03 12:16 PM, " annie523q " <jamz710@...> wrote: