Introduction

[Guest guest]

Hi Janet ~ Welcome!

I have a 12 year old son as well, Dylan. He has down syndrome & autism as

well (along with type 1 diabetes & alopecia). We are in southeastern Wisconsin.

He was an only child, but we are in the process of adopting our 9 month old

foster baby. He's adjusted quite well - we've had the baby since January.

I'm sure you will find lots of good information & advice here on the list.

Becky

Janet Buttrick wrote:

Hello! My name is Janet Buttrick. I have a 12 year old son with Down

syndrome and autistic spectrum disorder. He is my only child. My husband and

I have been married for 22 years and live in Logan, Oh.

---------------------------------

Pinpoint customers who are looking for what you sell.

[Guest guest]

Hi Janet,

Welcome we have an 18 yo dtr with DS-Autism and live in Florida.

Nice to meet you.

Sherry

[Guest guest]

Hi Janet,

Welcome to the group. I have an older son and daughter, both adults and a

younger son home forever.

Charlyne

Mom to Zeb 14 DS/OCD/ASD?

Janet Buttrick wrote:

Hello! My name is Janet Buttrick. I have a 12 year old son with Down

syndrome and autistic spectrum disorder. He is my only child. My husband and

I have been married for 22 years and live in Logan, Oh.

[Guest guest]

Hi Janet!

We are practically neighbors- well, you're only about an hour away

from me- I live in Westerville which is at 1:00 on the Columbus

outerbelt.

Where have you gone for services for Ely? Do you usually end up in

Lancaster or Columbus? And what kind of therapy will Ely be getting?

Wow, alopecia, too? Pete has it, too. He is pretty bald with the

back of his head needing to be buzzed off each week. His eyebrows

got lighter and thinner as he got older. He was completely bald at

age eight and by 10 it all grew back in and then at 13 it was gone

again. He is very obsessed with everyone else's hair, even though

he'll stroke his bald top and say, " I have no hair! Smooth head! "

Then he might go up to a complete stranger and try to stroke their

hair and say, " Nice hair " . Or he might try and yank it. A little

off-putting.

Pete is going to a camp called Recreation Unlimited that is north of

Delaware Ohio. He is in day camp there for five weeks but we will be

exploring their respite weekends for later on in the year.

Pete is my only child also- he'll be 17 tomorrow!

Glad to have you on board, as well as all the new members-

Beth

At 12:15 AM +0000 7/20/07, wrote:

>Hello! My name is Janet Buttrick. I have a 12 year old son with Down

>syndrome and autistic spectrum disorder. He is my only child. My husband and

>I have been married for 22 years and live in Logan, Oh.

[Guest guest]

Hello and Welcome! I grew up down the road from you in Athens, OH!!!

Ecki

Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01)

>

> Hello! My name is Janet Buttrick. I have a 12 year old son with Down

> syndrome and autistic spectrum disorder. He is my only child. My

husband and

> I have been married for 22 years and live in Logan, Oh.

>

[Guest guest]

yes welcome to the group!!! my oldest, nathan will be 16 this august, sniff, i

love this group, anything and everything in support and help needed when dealing

with DS-autism. shawna

To: @...: rylan_becky@...: Thu, 19 Jul 2007

11:59:53 -0700Subject: Re: introduction

Hi Janet ~ Welcome! I have a 12 year old son as well, Dylan. He has down

syndrome & autism as well (along with type 1 diabetes & alopecia). We are in

southeastern Wisconsin. He was an only child, but we are in the process of

adopting our 9 month old foster baby. He's adjusted quite well - we've had the

baby since January. I'm sure you will find lots of good information & advice

here on the list.BeckyJanet Buttrick wrote:Hello! My

name is Janet Buttrick. I have a 12 year old son with Downsyndrome and autistic

spectrum disorder. He is my only child. My husband andI have been married for 22

years and live in Logan, Oh.---------------------------------Pinpoint customers

who are looking for what you sell. [Non-text portions of this message have been

removed]

_________________________________________________________________

See what you’re getting into…before you go there.

http://newlivehotmail.com

[Guest guest]

Welcome to the group . You will find wonderful support and tons of

knowledge here!

Blessings, W

homeschooling Mom to AJ (12), (9), ^l^, (5,

Trisomy 18 mosaic AKA 's syndrome) and Birgitta (age 4, adoption

finalized 2/1/05 !!, Trisomy 21 AKA Down's Syndrome, Fetal Alcohol Syndrome,

Autism, SID)

************************************** Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

[Guest guest]

Hi , and welcome. I'm sorry for what you've been through with your son.

I've had two friends struggle through leukemia with their little ones, and I

have seen how difficult it is. We live in Katy, TX, which is outside of Houston.

I have twin girls who are 7, named Ally & Katy. Katy has DS and ASD. Currently

she attends private school and is doing better there than she had in public

school. Texas is not known for its great spec ed programs either. I look

forward to talking with you more.

Hugs,

melanie cason wrote:

Hello,

I am new to this group. We live in ton, S.C. My family includes my

husband, who works in radio commerical production, my daughter who is a senior

in college and Will,who is eleven who has down syndrome and autism. He has also

had leukemia, but has been in remission for 2 years now. He is non-verbal and is

in the Profoundly Mentally Disabled class in the public school system. There is

always a fight for autism services here in South Carolina. So much that

physicians discourage families with children with autism from moving here.

I have had to learn the system and work it to get services for my child. (We

have been through 6 or 7 different service providers with the disability board).

I guess what I am looking for is other parents or caregivers to network with.

There seem to be new challenges with every age and I look forward to sharing and

benefitting from this group.

Cason MSN, RN

" We cannot cure the world of sorrows, but we can choose to live in joy " --ph

__________________________________________________________

Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder

tool.

http://autos.yahoo.com/carfinder/

[Guest guest]

Welcome to our list, . You will find other nurses on this list who

are parents of children with dual dx. And caregiver parents who are forever

embattled to find services that their families need.

But we also have success stories and inspring occasions.

Join us in the ups and downs of parenting our children.

BTW: My family retired to N E Georgia with Elie, our then 21 yo son. While

certain services have been difficult to obtain, we have found an extra year

of schooling, (from PA were FAPE ends on the 21 birthday to GA where FAPE

ends when you turn 22)readily availabe PT, and the biggest plus of all: a

suitable work and day program with wonderful people and friends for my

son!!!

We have 6 children now : Alan, 40 who teaches computer printing, web

design, graphics in MD, Rhonda, 40 Phd , director of curriculum in NY,

(twins considered DD aat age 2 when we got them,) Robbyn 37, pediatric OT

for sensory issues, Avram, 33 web designer and graphic aartist, printer for

a medical publishing company, , 25, who adopted us at 18, correctional

officer for juvenile offenders, and ELie 22 yo adopted at age 3 with DS and

ASD and now a worker who gets a paycheck!!!

>

> Hello,

>

> I am new to this group. We live in ton, S.C. My family includes my

> husband, who works in radio commerical production, my daughter who is a

> senior in college and Will,who is eleven who has down syndrome and autism.

> He has also had leukemia, but has been in remission for 2 years now. He is

> non-verbal and is in the Profoundly Mentally Disabled class in the public

> school system. There is always a fight for autism services here in South

> Carolina. So much that physicians discourage families with children with

> autism from moving here.

> I have had to learn the system and work it to get services for my child.

> (We have been through 6 or 7 different service providers with the disability

> board). I guess what I am looking for is other parents or caregivers to

> network with.

>

> There seem to be new challenges with every age and I look forward to

> sharing and benefitting from this group.

>

> Cason MSN, RN

>

> " We cannot cure the world of sorrows, but we can choose to live in

> joy " --ph

>

> __________________________________________________________

> Choose the right car based on your needs. Check out Yahoo! Autos new Car

> Finder tool.

> http://autos.yahoo.com/carfinder/

>

>

[Guest guest]

Welcome to the group - you will find much useful information, help and support

here. We have a 12 year old son, Dylan with the dual diagnosis, type 1 diabetes

& alopecia. We also are in the process of adopting our 10 month old foster son,

who appears at this point to be developing quite typically which has been

exciting for all of us.

Becky

lesliestevens316 wrote:

I was looking over the messages, and it looks like the group is

really " personal " , so I thought I would introduce ourselves. My name

is s, and my husband, , and I have a 4 year old

girl with ds and autism. We knew at 7 to 8 months old, but we live

in East Texas, and the resources here are limited with for ds alone,

but the dual diagnosis was impossible. We ended up going to see Dr.

Capone in land at Kennedy Kreiger to finally get the

diagnosis. It was funny...they all kept saying " You drove all the

way to land for us to tell you she has autism? " The Downs clinic

in Dallas all agreed a couple of years ago that she did, but we could

not get a neurologist to commit to it... we had the " autistic traits

and characteristics " label for two years.

Anyway, I am the Vice President of our Down syndrome group here in

East Texas, but again, Kirsten is different from 99% of the kids in

our group. She does not enjoy the outings and the parties... I

really can't even take her to the meetings because of the

stimulation...so I was really excited when Dr. Capone told us of this

listserv.

We look forward to visiting with this group...

Blessings

and s

---------------------------------

Be a better Globetrotter. Get better travel answers from someone who knows.

Yahoo! Answers - Check it out.

[Guest guest]

Hi ,

Welcome, yes, this group is friendly, supportive and a wealth of information. We

have a few members from Texas. I am in Ct. My youngest son, Zeb is 14. He was

never officially diagnosed. He is so different than when I first joined this

group. I would like to believe it was because of what I have learned from this

group.

Charlyne

Mom to Zeb 14 DS/OCD/ASD?

lesliestevens316 wrote:

I was looking over the messages, and it looks like the group is

really " personal " , so I thought I would introduce ourselves. My name

is s, and my husband, , and I have a 4 year old

girl with ds and autism. We knew at 7 to 8 months old, but we live

in East Texas, and the resources here are limited with for ds alone,

but the dual diagnosis was impossible. We ended up going to see Dr.

Capone in land at Kennedy Kreiger to finally get the

diagnosis. It was funny...they all kept saying " You drove all the

way to land for us to tell you she has autism? " The Downs clinic

in Dallas all agreed a couple of years ago that she did, but we could

not get a neurologist to commit to it... we had the " autistic traits

and characteristics " label for two years.

Anyway, I am the Vice President of our Down syndrome group here in

East Texas, but again, Kirsten is different from 99% of the kids in

our group. She does not enjoy the outings and the parties... I

really can't even take her to the meetings because of the

stimulation...so I was really excited when Dr. Capone told us of this

listserv.

We look forward to visiting with this group...

Blessings

and s

[Guest guest]

Hi ~ Welcome to our group. I am in southeast WI & have a 12 y/o son with down

syndrome & autism. It sounds like Mark has some of the things Dylan did

too that lead us to believe he had autism as well, the puzzles, grinding teeth,

staring at his hands. A good start to a diagnosis is seeing a developmental

pediatrician.

Nice to have you here.

Becky

Peri Ann Query 2 wrote:

Hello,

My name is Peri Ann Query. My husband, Greg and I live in Illinois. I have two

children. Lynn, a girl, age 10. Also a son, Mark , age 6.5 with Down

Syndrome.

Mark had many respiratory difficulties at birth. So we have always " written off "

his oddities and delays due to the fact that we didn't know we were having a

child with DS and the first hospital didn't know what they were doing.

However, I wonder if there is more to his condition and so I'm here to learn

about what your kids are doing.

Mark is a GREAT kid. Easy in many ways ---easy to turn around a sad or mad

attitude. A great laughter seeker and has a contagious laugh. Mark is fun to be

around and shows that he is smart! Fantastic on the computer and in doing

puzzles and recognition sight reading. However, he grinds his teeth, waves one

hand in front of his face, seeks out string to " look " at, and is not talking as

well as most kids with DS his age.

So, hello. Thanks for having this group. I hope to learn much from you.

Peri Ann Query

[Guest guest]

Hi Peri Ann

Welcome to the group. What part of Illinois are you from? We are in

Illinois too and have a son that is almost 7. I don't post much but I am

learning so much.

>

>Reply-To:

>To: < >

>Subject: Introduction

>Date: Thu, 23 Aug 2007 09:11:02 -0500

>

>Hello,

>

>My name is Peri Ann Query. My husband, Greg and I live in Illinois. I

>have two children. Lynn, a girl, age 10. Also a son, Mark ,

>age 6.5 with Down Syndrome.

>

>Mark had many respiratory difficulties at birth. So we have always

> " written off " his oddities and delays due to the fact that we didn't know

>we were having a child with DS and the first hospital didn't know what they

>were doing.

>

>However, I wonder if there is more to his condition and so I'm here to

>learn about what your kids are doing.

>

>Mark is a GREAT kid. Easy in many ways ---easy to turn around a sad or mad

>attitude. A great laughter seeker and has a contagious laugh. Mark is fun

>to be around and shows that he is smart! Fantastic on the computer and in

>doing puzzles and recognition sight reading. However, he grinds his

>teeth, waves one hand in front of his face, seeks out string to " look " at,

>and is not talking as well as most kids with DS his age.

>

>So, hello. Thanks for having this group. I hope to learn much from you.

>

>Peri Ann Query

>

>

[Guest guest]

Hi Peri

I believe we have corresponded before...maybe from the ES list? Sorry you have

to be here but a big welcome. This group has become huge and you will certainly

get many responses and support for any problems or questions.

Sherry mom to DS-Aut 18 yo

[Guest guest]

" ...I am looking forward to meeting you all "

> Sharon

Welcome! I'm P., mom to Janie (8-DS/ADHD/PDD-NOS/Social

Anxiety/lots of sensory issues & aggression) and Katelyn (11-ADHD,

depression, some OCD & attachment issues), plus 2 typical adult

daughters and lots of grandkids. Every time I think Janie has got the

potty thing down, she changes her mind. Lately she will take herself

to the toilet for BM's, but gets down to wipe frequently and who knows

where she will drop the tp??? At least she is getting part of it

right! Toileting issues come up frequently on this board. I look

forward to learning more about your daughter's successes.

P.

[Guest guest]

Dear Sharon.....

a belated welcome to the group. Your name sounds familiar but I can't

recall from where. I'm Sherry- my dtr is 18 and has a dual dx of DS and

Autism. We've done alot of " weird " dietary protocols and alternative

interventions over the years although these are not big topics of discussion on

this list.

now has an autoimmune disease of Crohn's and colitis (IBD)...can't

call it dysbyiosis anymore tho that's what it was once called when we ventured

into the DAN world. She's now on the specific carbohydrate diet for 4 years,

went gfcf 8 years ago.

hmmmm....are you on any speech related lists perhaps?

In any case , a warm welcome and hope you feel comfortable in our little

(actually huge now) community.

Sherry

[Guest guest]

HI Sherry

Yes I have some posts on the alton web site because

Victor asked me to write some and since Alina could

not suck at all when born and no one knew what to do,

I found out what to do, unfortunately a little late

for Alina but I wanted to pass on to other moms for

free and he gave me the avenue to do just that! I do

not claim to be an expert at feeding issues just a mom

who took specialized training because it was in my

field.

So I do not know that book about the brain that you

were talking about, do you think I should read it?

And I have a few for you to read...Jordan Rubin's

" Restoring Your Digestive Health " , and a new one

authored by the guy who started the clinic we went to

in Chicago 2 weeks ago called " Take Control of your

Health " by Dr. ph Mercola (although a warning to

you as he is a little severe but so much of what he

says is helping my health, I only hope it helps

Alina). I am a Christian and I know there is an

answer out there for our kids...we just have to find

it!!! I really do believe that from the bottom of my

heart!

Sherry did your daughter do a detox of heavy metals as

this is part of our protocol but only after my

daughter's digestion is restored because they say if

you detox and the gut is not in tact the toxins will

just get reabsorbed again somewhere else in the body!

Sharon

--- gldcst wrote:

> Dear Sharon.....

> a belated welcome to the group. Your name

> sounds familiar but I can't recall from where. I'm

> Sherry- my dtr is 18 and has a dual dx of DS

> and Autism. We've done alot of " weird " dietary

> protocols and alternative interventions over the

> years although these are not big topics of

> discussion on this list.

> now has an autoimmune disease of Crohn's

> and colitis (IBD)...can't call it dysbyiosis anymore

> tho that's what it was once called when we ventured

> into the DAN world. She's now on the specific

> carbohydrate diet for 4 years, went gfcf 8 years

> ago.

> hmmmm....are you on any speech related lists

> perhaps?

> In any case , a warm welcome and hope you feel

> comfortable in our little (actually huge now)

> community.

> Sherry

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and

lay it on us. http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7

[Guest guest]

My son is 7 with DS and was diagnosed with autism this summer. We live in

Indiana. He's also a leukemia survivor. Welcome to the group and feel free to

contact me directly or ask the whole group your questions. I'm on when I can;

busy time of year here.

Beth, mom to , age 7, with DS, autism, and a leukemia survivor; also mom to

, 14, and , 11

introduction

Hi

I am the Mother of a 6 yr old daughter with Down Syndrome who

also has recently been diagnosed with Autism. I would like to talk with other

parents of similiar age child if possible. I do belong to a DS support

group but need to find a better fit , through goggling found you all and would

like to get more info and share ideas and support. We live in North

Carolina. Are there any of you out there in the North Carolina area?

************************************** See what's new at http://www.aol.com

[Guest guest]

Welcome and to all those other new parents. Louise

HYPERLINK

" http://groups.yahoo.com/group//message/76464;_ylc=X3oDMTJxamsyMTR2

BF9TAzk3MzU5NzE1BGdycElkAzQxMDMwNQRncnBzcElkAzE3MDUwMTM0ODEEbXNnSWQDNzY0NjQE

c2VjA2Rtc2cEc2xrA3Ztc2cEc3RpbWUDMTE5NzM4MzE5Mw-- " Introduction

Posted by: " kalmia567 " HYPERLINK

" mailto:kalmia567@...?Subject=%20Re%3AIntroduction " kalmia567@...

HYPERLINK " http://profiles.yahoo.com/kalmia567 " kalmia567

Mon Dec 10, 2007 9:42 am (PST)

Hello everyone,

I'm , husband is Ray, and our daughter is Anne. She's 10 years

and the school pysch evaluator tested her as being high on the

autistic/asperger'-s domains. What ever THAT means!

It was brought up to us a while ago that she might be autistic as

well as having DS, but we just thought it was Annie being Annie. I

read the Disability Solutions newsletter about DS and autism, and

realized the school is right.(don't tell them I said that!) She loves

to just feel one of her soft rag dolls feet over and over, she does

the hand flapping, and even though she makes eye contact and can be

very loving at times, she often doesn't respond to questions (unless

you repeat it 5 times), and would much rather be alone, watching

videos. When she does talk, it's just movie scripts, and usually the

same 5 or 6 lines over and over. I guess I should be glad for the

diagnosis, I've been blaming myself because she's an only child (had 3

miscarriages before I had her, no pregnancies since) and I don't get

her out and around other people enough. But it still hurts, and at

first I couldn't stop crying. I think I never really dealt w/ the dx

of DS, so this has shoved reality in my face and made me look.

Well, enough of the pity-party. I just wanted to introduce us and

let you all know I've been lurking. It's nice to find a place where

others are dealing with the same stuff.

No virus found in this outgoing message.

Checked by AVG Free Edition.

Version: 7.5.503 / Virus Database: 269.17.1/1182 - Release Date: 12/12/2007

11:29 AM

[Guest guest]

Welcome ,

Yes, you are correct it is a blame game most of us have undergone,

typical behavior.

You probably have been reviewing some of the post you can relate to

and wonder if we are talking about your child only the name has been

changed. LOL!!

It is nice to have this wonderful list in many ways been a lifesaver

here for my son & I.

Welcome aboard.

Irma,19,DS/ASD

[Guest guest]

Welcome Stacey,

My daughter is 15 with ds/autism, apraxia and HOH. Looking forward to

hearing more from you.

In a message dated 1/21/2008 1:58:39 P.M. Eastern Standard Time,

crystalbeachgirl@... writes:

Hi everyone,

My name is Stacey. I am married to and we have have 2

daughters. Randi is 11, and Maggie who will be 9 in March. Maggie

has ds-asd and is deaf.

I read a few of the posts and I felt relief as finally there may be a

place for us with people who undersatnd, struggle with similar

issues, and may have real practical advice to help us. In return, I

hope that our experiences can aid others.

Maggie has a severe developmental delay (about 12-18months old) and

is everely autisitic. We did not get a diagnosis until age 7 as the

1 psyche that we saw when she was younger told us " approximately 1 in

5000000 children with ds will truly have autism. I would not expect

to see one. You`ll just have to understand that she is severly

delayed because of the ds. " " The autistic tendencies she displays are

caused from low developmental function " A few years later, once we

were off the wait lists and received assessments from behaviour and

OT, autism was again brought up. we told them what we were told and

they sent us to another psyche. He did a thorough evaluation and

dx`d with severe autism. He said that it was rare but when it is..it

is!

Anyways, since then we`ve been involved in some programming and are

on the wait list for IBI.

I can`t say enough how connected I feel ..finally..

I don`t generally use the computer much..not enough hours in the

day..+ I`ve felt for so long that there is nowhere that we truly

fit...but I`m hoping to be able to keep up with this board and be an

active participant.

Take care,

Hope to get to know you

Stacey

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

-

Thanks, can you please help me..I can`t seem to figure this posting

thing out. Do you e-mail in your original post..every time I tried

to post..I could see someone else's old post beside my name. I

didn`t think mine was anywhere but obviously ..here it is under

introduction (3 times) lol! Sorry for that. HELP! Thanks a ton.

Lookn forward to getting to now you,

Stacey

-- In , Csvillars@... wrote:

>

> Welcome Stacey,

>

> My daughter is 15 with ds/autism, apraxia and HOH. Looking forward

to

> hearing more from you.

>

>

> In a message dated 1/21/2008 1:58:39 P.M. Eastern Standard Time,

> crystalbeachgirl@... writes:

>

>

>

>

> Hi everyone,

> My name is Stacey. I am married to and we have have 2

> daughters. Randi is 11, and Maggie who will be 9 in March. Maggie

> has ds-asd and is deaf.

> I read a few of the posts and I felt relief as finally there may

be a

> place for us with people who undersatnd, struggle with similar

> issues, and may have real practical advice to help us. In return,

I

> hope that our experiences can aid others.

> Maggie has a severe developmental delay (about 12-18months old)

and

> is everely autisitic. We did not get a diagnosis until age 7 as

the

> 1 psyche that we saw when she was younger told us " approximately 1

in

> 5000000 children with ds will truly have autism. I would not

expect

> to see one. You`ll just have to understand that she is severly

> delayed because of the ds. " " The autistic tendencies she displays

are

> caused from low developmental function " A few years later, once we

> were off the wait lists and received assessments from behaviour

and

> OT, autism was again brought up. we told them what we were told

and

> they sent us to another psyche. He did a thorough evaluation and

> dx`d with severe autism. He said that it was rare but when it

is..it

> is!

> Anyways, since then we`ve been involved in some programming and

are

> on the wait list for IBI.

> I can`t say enough how connected I feel ..finally..

> I don`t generally use the computer much..not enough hours in the

> day..+ I`ve felt for so long that there is nowhere that we truly

> fit...but I`m hoping to be able to keep up with this board and be

an

> active participant.

> Take care,

> Hope to get to know you

> Stacey

>

>

>

>

>

>

>

> **************Start the year off right. Easy ways to stay in

shape.

> http://body.aol.com/fitness/winter-exercise?

NCID=aolcmp00300000002489

>

>

>

[Guest guest]

> >

> > Welcome Stacey,

> >

> > My daughter is 15 with ds/autism, apraxia and HOH. Looking

forward

> to

> > hearing more from you.

> >

> >

> > In a message dated 1/21/2008 1:58:39 P.M. Eastern Standard Time,

> > crystalbeachgirl@ writes:

> >

> >

> >

> >

> > Hi everyone,

> > My name is Stacey. I am married to and we have have 2

> > daughters. Randi is 11, and Maggie who will be 9 in March. Maggie

> > has ds-asd and is deaf.

> > I read a few of the posts and I felt relief as finally there may

> be a

> > place for us with people who undersatnd, struggle with similar

> > issues, and may have real practical advice to help us. In

return,

> I

> > hope that our experiences can aid others.

> > Maggie has a severe developmental delay (about 12-18months old)

> and

> > is everely autisitic. We did not get a diagnosis until age 7 as

> the

> > 1 psyche that we saw when she was younger told us " approximately

1

> in

> > 5000000 children with ds will truly have autism. I would not

> expect

> > to see one. You`ll just have to understand that she is severly

> > delayed because of the ds. " " The autistic tendencies she

displays

> are

> > caused from low developmental function " A few years later, once

we

> > were off the wait lists and received assessments from behaviour

> and

> > OT, autism was again brought up. we told them what we were told

> and

> > they sent us to another psyche. He did a thorough evaluation and

> > dx`d with severe autism. He said that it was rare but when it

> is..it

> > is!

> > Anyways, since then we`ve been involved in some programming and

> are

> > on the wait list for IBI.

> > I can`t say enough how connected I feel ..finally..

> > I don`t generally use the computer much..not enough hours in the

> > day..+ I`ve felt for so long that there is nowhere that we truly

> > fit...but I`m hoping to be able to keep up with this board and be

> an

> > active participant.

> > Take care,

> > Hope to get to know you

> > Stacey

> >

> >

> >

> >

> >

> >

> >

> > **************Start the year off right. Easy ways to stay in

> shape.

> > http://body.aol.com/fitness/winter-exercise?

> NCID=aolcmp00300000002489

> >

> >

> >

[Guest guest]

Hello and welcome Stacey!

I'm surprised you had someone tell you that Autism occurs in 1 out of

5000000 kids with DS. I thought it was more like 1 in 10! Can't find

the documentation on that, I think it's on the Riverbend site

somewhere.

In my town of 2400 people, there are TWO kids with Autism and Down

syndrome!

Anyway, I always find it easier to post by Web Post, it never seems

to work right when I just try to send a post by email.

Ecki

Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01)

http://oppositekids.blogspot.com/

>

> Hi everyone,

> My name is Stacey. I am married to and we have have 2

> daughters. Randi is 11, and Maggie who will be 9 in March. Maggie

> has ds-asd and is deaf.

> I read a few of the posts and I felt relief as finally there may be

a

> place for us with people who undersatnd, struggle with similar

> issues, and may have real practical advice to help us. In return,

I

> hope that our experiences can aid others.

> Maggie has a severe developmental delay (about 12-18months old) and

> is everely autisitic. We did not get a diagnosis until age 7 as

the

> 1 psyche that we saw when she was younger told us " approximately 1

in

> 5000000 children with ds will truly have autism. I would not

expect

> to see one. You`ll just have to understand that she is severly

> delayed because of the ds. " " The autistic tendencies she displays

are

> caused from low developmental function " A few years later, once we

> were off the wait lists and received assessments from behaviour and

> OT, autism was again brought up. we told them what we were told

and

> they sent us to another psyche. He did a thorough evaluation and

> dx`d with severe autism. He said that it was rare but when it

is..it

> is!

> Anyways, since then we`ve been involved in some programming and are

> on the wait list for IBI.

> I can`t say enough how connected I feel ..finally..

> I don`t generally use the computer much..not enough hours in the

> day..+ I`ve felt for so long that there is nowhere that we truly

> fit...but I`m hoping to be able to keep up with this board and be

an

> active participant.

> Take care,

> Hope to get to know you

> Stacey

>

[Guest guest]

Hi,My name is Swati and my husband's name is Prateek. We joined this group almost a couple of months back but never got around to introducing ourselves. We are proud parents of 1yr old twin boys - Vihaan and Saksham. We currently live in New Delhi, India. Our boys were born on 27-May-2011. Saksham has Down Syndrome.

I have been reading the posts on this forum and am glad to be a part of this to interact with everyone else.Cheers,SwatiMom of Saksham (DS) and Vihaan, 12 months +