Re: New parent here

[Guest guest]

Hi Greg. This is a great group. Can you tell us more about and how

she is doing. Does she have any delays? If so, what are they? How does

she do socializing? Does she have a lot of friends? I have a daughter who

is 2 1/2 (MDS) so older children interest me. Thanks. .

On Fri, 14 Apr 2000 08:34:12 -0000, MosaicDSegroups wrote:

> Hi,

>

> I was surprized to find a Mosaic Down Syndrome www site. Its great!

> My daughter is 8 yrs old and has mosaic ds. (She has approx.

> 80 percent ds and 20 percent nda). Shes a happy 2nd Grader. Our

> family participated in the Virginia Commonwealth University Mosaic DS

> study a few years ago. I haven't seen much more about mosaic ds since

> now when I found your www site. The www site is set up great - It

> allows you to check postings instead of regular emails or digests -

> if you choose.

>

> Greg Baker

>

>

>

>

>

> ------------------------------------------------------------------------

> 1.6 Million Digital Images!

> Download one Today from Corbis.com

> http://click./1/3356/2/_/581564/_/955701307/

> ------------------------------------------------------------------------

>

> Won't you please consider adding your personal story on the MDS website

today? http://www.mosaicdownsyndrome.com And please don't forget to check

the message board frequently...it's a great way to meet others who are

affected by MDS, who are not on our mailing list!

http://www.insidetheweb.com/mbs.cgi/mb778401

>

_______________________________________________________

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[Guest guest]

Hi again.

is doing great. She is a very happy kid.

See had a very difficult delivery and birth. My wife originally had a

threatened miscarriage. However, with bedrest and turbutaline meds

along with some hormone therapy for lung development she made it. She

eventually was at least a couple weeks overdue. The delivery involved

an emergency c-section with a very low pulse. There was cord wrap and

merconium involved and she had about a one month stay in a ped icu

unit. She was on a respirator for awhile in the ped icu unit. They

originally gave her a 50/50 chance of surviving the merconium at the

ped icu unit.

The ds was a surprize - we had alpha feta tests and sonagrams.

However, after the shock at birth with ped icu - it has been great.

is alot of fun.

After the ped icu stay - everything has been okay medically.

's medical history involved tonsils and adenoids removed at

around 3 yrs of age.

has been on nutrivene vitamins since about 4 yrs old.(She's

now 8 yrs. old) It seemed to help reduce the amount of colds, etc..

Nurtivene may be controversal on some listserves. Do any other mds

parents use Nurtrivene vitamins?

had in home edu services since about 3 months old. At about 2

1/2 yrs old she began going to an inclusive pre-school program. She

had ot, pt, and a variety of services at home and in the pre-school

program.

has a one to one aid at a inclusive program at a regular

k - 2 elementary school. She has pull outs for special services such

as ot and speech therapy. Speech is difficult for - but she

is improving. She has some stuttering - but we are working at having

her take her time speaking. The school district has been great with

her iep plans. She's headed to 3rd grade next yr..

At school has been treated good by her peers. We had a big

Birthday party a few weeks ago with alot of her classmates and other

friends with a Magician and alot of other activities. We used a

church hall. The kids at school talked about the party for days.

At school she has two favorite friends - usually at the playground.

loves videos at home - favorites are Annie, Grease, of

the Jungle, The Santa Clause, and many more. She memorizes alot of

the lines and acts out the lines.

likes gymnastics. She loves shopping, Mall's, Walmart, Ames,

and is into Barbies etc..

We were going to get involved with Special Olympics here.

However, it seems gauged here to older teenagers and adults.

's real " teacher " is her older sister who is 10 yrs old. Her

sister and her sister's friends keep her busy. learns alot by

having an older sister.

is very close to her grandmother - who is a great help.

Her grandmother is a snowbird in Florida - and likes a winter

break to Florida with pool alot of activities.

We are from Central New York.

In the late spring, summer, and fall - and her grandmother

keep very busy.

does love probably mostly doing things at home. She has a 2

yr old beagle/lab that watches out for her at home (Very protective

dog).

is very independent. She loves to do household stuff and

takes alot of pride in it. Keeping her room organized, setting dinner

table, etc..

I hope this intro isn't too long. Usually I never post to

listserves. I am a member of other ds listserves and generally just

read email digests periodically. The posting of messages is easier

than most places too. We are members of a local ds group and the

national too.

Lets hear about others here.

Be Back Later,

Greg

>

> > Hi,

> >

> > I was surprized to find a Mosaic Down Syndrome www site. Its

great!

> > My daughter is 8 yrs old and has mosaic ds. (She has

approx.

> > 80 percent ds and 20 percent nda). Shes a happy 2nd Grader. Our

> > family participated in the Virginia Commonwealth University

Mosaic DS

> > study a few years ago. I haven't seen much more about mosaic ds

since

> > now when I found your www site. The www site is set up great -

It

> > allows you to check postings instead of regular emails or

digests -

> > if you choose.

> >

> > Greg Baker

> >

> >

> >

> >

> >

> > -----------------------------------------------------------------

-------

> > 1.6 Million Digital Images!

> > Download one Today from Corbis.com

> > http://click./1/3356/2/_/581564/_/955701307/

> > -----------------------------------------------------------------

-------

> >

> > Won't you please consider adding your personal story on the MDS

website

> today? http://www.mosaicdownsyndrome.com And please don't forget

to check

> the message board frequently...it's a great way to meet others who

are

> affected by MDS, who are not on our mailing list!

> http://www.insidetheweb.com/mbs.cgi/mb778401

> >

>

>

>

>

>

> _______________________________________________________

> Get 100% FREE Internet Access powered by Excite

> Visit http://freelane.excite.com/freeisp

[Guest guest]

In a message dated 4/15/00 12:58:18 AM Eastern Daylight Time,

bakerg@... writes:

<< is doing great. She is a very happy kid. >>

sounds like she is doing great.

I have the same hopes for Kaitee, sometimes I look at her and I wonder, how

far will she proceed, then I turn around and look again and watch her with

her trike, tipped upside down, hand on each pedal making the wheel turn, her

tongue resting on the turning wheel........ lol debbi mom to kaitee 3

[Guest guest]

In a message dated 4/15/00 12:58:25 AM Eastern Daylight Time,

bakerg@... writes:

<< loves videos at home - favorites are Annie, Grease, of

the Jungle, The Santa Clause, and many more. She memorizes alot of

the lines and acts out the lines.

likes gymnastics. She loves shopping, Mall's, Walmart, Ames,

and is into Barbies etc..

>>

Hi Greg

My six and a half year old daughter sounds a lot like your daughter

.

is doing well in a regular first grade class, but sometimes has

trouble following directions which can get her into trouble.

She also loves to watch videos and of the Jungle and The Santa Claus

and two of her favorites also, but her favorite movie to act out is Beauty

and the Beast. She goes to dancing school and gymnastics and Brownies and

loves to play with her Barbie dolls. She loves to read and you can usually

find her walking around with a book in her hand.

Unlike , does not really like to go shopping, so if you're

looking to spend a day in the mall, don't bring !!!

We are from New York also, in Suffolk County on Long Island. Where in

Central New York do you live?

Hope you enjoy the group and I'm looking forward to getting to know more

about you and .

ann (Mom to , mds, 6 yrs old and 10 yrs old)

[Guest guest]

It is absolutely true that these kids are kids before they are Downs.

and sound just like Ben's (15 mo.MDS)sister Kelsey(nonMDS). They

sound " normal " to me! She loves Barbies, clothes, and her favorite video is

Pocahontas.

[Guest guest]

Hi again,

We are from the Central New York area - actually upstate - the

Syracuse suburbs - between Albany and Buffalo. Its snow country in

the winter! One year we had 210 inches of it. The movie " Snowday " was

about this area (But filmed in Canada).

Where is everyone else from? How are the edu services and inclusion?

Regarding sign language - did use simple sign language in her

preschool years. Maybe the 1 1/2 to 4 yr old range. It helped to

reduce frustation with communicating. (She knew more signs that I

did!)

Greg

> In a message dated 4/15/00 12:58:25 AM Eastern Daylight Time,

> bakerg@l... writes:

>

> << loves videos at home - favorites are Annie, Grease,

of

> the Jungle, The Santa Clause, and many more. She memorizes alot of

> the lines and acts out the lines.

>

> likes gymnastics. She loves shopping, Mall's, Walmart,

Ames,

> and is into Barbies etc..

> >>

>

>

>

> Hi Greg

>

> My six and a half year old daughter sounds a lot like

your daughter

> .

> is doing well in a regular first grade class, but

sometimes has

> trouble following directions which can get her into trouble.

>

> She also loves to watch videos and of the Jungle and The

Santa Claus

> and two of her favorites also, but her favorite movie to act out is

Beauty

> and the Beast. She goes to dancing school and gymnastics and

Brownies and

> loves to play with her Barbie dolls. She loves to read and you can

usually

> find her walking around with a book in her hand.

>

> Unlike , does not really like to go shopping, so

if you're

> looking to spend a day in the mall, don't bring !!!

>

> We are from New York also, in Suffolk County on Long Island. Where

in

> Central New York do you live?

>

> Hope you enjoy the group and I'm looking forward to getting to know

more

> about you and .

>

> ann (Mom to , mds, 6 yrs old and 10 yrs old)

[Guest guest]

Hi Greg,

We are from southeastern Wisconsin. Mahrya has only had expirience in the

early childhood program as she is only 3 1/2. The program is decent

although I am not overly pleased with the speech program which is not

taylored to her at all. My almost 5 year old who is right on target

developmentally has a hard time with the worksheets they send ome. But

Mahrya is progressing, and starting to put 3 and sometimes 4 words together

in a sentence. She will be attending the same parochial school my other

kids do. They are willing there to work with her and create her owm

program. We will see at the time if we will continue to utilize the public

school for speech services.

Luanne

mom to Mahrya 3/13 mds, Ben almost 5 (he reminds us daily that his birthday

is comming up) Alan 11, Sandy 13, Steve 15, Dan 17 (who had a girl over to

the house last night for the first time, boy was that weird!)

> Where is everyone else from? How are the edu services and inclusion?

>

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[Guest guest]

Hi

I've just read your comments on . My daughter was exactly the

same at that age. She used to memorise all the movies that she liked--

mostly musical ones like Grease, Beauty and the Beast etc and now

that she is older (almost 14) she is still doing it--to the point

where she becomes so involved that the house could burn down and she

wouldn't notice!

In fact over Christmas we went to see the live show of The Sound of

Music at a large theatre and without evening thinking she began

singing out loud--she forget she was with thousands of other people--

I had to tell her to be quiet.

She also loves shopping, but only for clothes. She looks so good.

Since the '70's fashions are in I still had a jacket left over from

the seventies. I had it cleaned up and it looks fantastic on her.

Take care

Marie Mum to Felicia (almost 14) MDS and Jayden 11

> > In a message dated 4/15/00 12:58:25 AM Eastern Daylight Time,

> > bakerg@l... writes:

> >

> > << loves videos at home - favorites are Annie, Grease,

> of

> > the Jungle, The Santa Clause, and many more. She memorizes alot

of

> > the lines and acts out the lines.

> >

> > likes gymnastics. She loves shopping, Mall's, Walmart,

> Ames,

> > and is into Barbies etc..

> > >>

> >

> >

> >

> > Hi Greg

> >

> > My six and a half year old daughter sounds a lot like

> your daughter

> > .

> > is doing well in a regular first grade class, but

> sometimes has

> > trouble following directions which can get her into trouble.

> >

> > She also loves to watch videos and of the Jungle and The

> Santa Claus

> > and two of her favorites also, but her favorite movie to act out

is

> Beauty

> > and the Beast. She goes to dancing school and gymnastics and

> Brownies and

> > loves to play with her Barbie dolls. She loves to read and you

can

> usually

> > find her walking around with a book in her hand.

> >

> > Unlike , does not really like to go shopping, so

> if you're

> > looking to spend a day in the mall, don't bring !!!

> >

> > We are from New York also, in Suffolk County on Long Island.

Where

> in

> > Central New York do you live?

> >

> > Hope you enjoy the group and I'm looking forward to getting to

know

> more

> > about you and .

> >

> > ann (Mom to , mds, 6 yrs old and 10 yrs old)