Introduction

[Guest guest]

I Nora, and welcome.? I must say this is one of my favorite lists.? We may not

always agree but the fountain of knowledge and support here can not compare to

anywhere on the net.

?Blessings,

homeschooling Mom to AJ (14), (10), ^l^, (age

7, Trisomy 18 mosaic AKA 's syndrome) and Birgitta (age 5, adoption

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

Autism, SID)

Introduction

Hello All!

My name is Nori , I am the proud parent of a 7 year old daughter

Dezrae that has DS and was just recently diagnosed with Autism. I also have

an 11 year old son Dan and a wonderfully supportive husband Dan. We are a

Marine Corps Family and we live in Oceanside, CA. I have always known that

that Dez had " Autisic tendency " (I hope that is PC), meaning she always

stems, by stiffining her arms and flapping when she is overwhelmed as well

as she uses humming as a self soothing mechanism. More recently we have

begun to see additional behaviors that have led us to believe that Dez needs

a little something more than what she is getting. We just moved here from

Texas and inorder to get services from the system here they require

psychological evals and other testing. We went to the visit with the child

psychologist and she gave us the diagnosis. I will wait for the official

report and probably request a second opinion if I am unsure of what is

written.

So, today is a new day, my pity party is over and I need to look to the

parent " experts " out there. Any websites or personal information that you

would like to share I am all ears.

Thank you,

Nori

[Guest guest]

Welcome to our world. You will also find a number of families either active

duty or retired. And people who will help you work thru which ever system

you need help with. Number of listmates from CA.

What lovely names in your family - love your spelling of Dezi!

I am very into girl's names at the moment as one of my daughters' is

currently pregnant with a new girl grandchild!!!

BTW - my son ELie is 23yo and just moved out of our house to live with a

friend. HE was not dx with ASD until he was about 10 or so even with weird

behaviors since age three. Dx the earlier the better helps to get

appropriate services quickly.

On Wed, Oct 29, 2008 at 10:59 PM, Nori wrote:

> Hello All!

>

> My name is Nori , I am the proud parent of a 7 year old daughter

> Dezrae that has DS and was just recently diagnosed with Autism. I also have

> an 11 year old son Dan and a wonderfully supportive husband Dan. We are a

> Marine Corps Family and we live in Oceanside, CA. I have always known that

> that Dez had " Autisic tendency " (I hope that is PC), meaning she always

> stems, by stiffining her arms and flapping when she is overwhelmed as well

> as she uses humming as a self soothing mechanism. More recently we have

> begun to see additional behaviors that have led us to believe that Dez

> needs

> a little something more than what she is getting. We just moved here from

> Texas and inorder to get services from the system here they require

> psychological evals and other testing. We went to the visit with the child

> psychologist and she gave us the diagnosis. I will wait for the official

> report and probably request a second opinion if I am unsure of what is

> written.

>

> So, today is a new day, my pity party is over and I need to look to the

> parent " experts " out there. Any websites or personal information that you

> would like to share I am all ears.

>

> Thank you,

> Nori

>

>

[Guest guest]

Hello, my name is and I just joined this group. My husband and

I live with our 6 children in Massachusetts.

I am concerned that my 38mo son (has DS) is showing characteristics

of autism. Today I plan to call his PCP to discuss how to go about

evaluating him. Some reasons I am concerned: He only makes eye

contact with family or a few other people he knows well; stares at

his hand a LOT (we always joked that he is checking a schedule),

stares at the ground whenever in the stroller or at lights when being

carried, punches his forehead and jaw repeatedly when upset-- or

bangs his head on the floor, severe hypotonia, nystgamus, only 5

words and/or signs, has 15 minute " giggle fits " at nothing every

night, which are really cute but I've just read are a characteristic

of ASD.

He really is a joy to our family, but some of these things have been

nagging at me lately. He loves to cuddle with his dad and me, and

absolutely adores his 14yo brother. He also did well with his

therapists and they never voiced a concern beyond the eye flickers

and hypotonia.

So I plan to browse the links and files available here and try to

learn, and also try to get him assessed. He did receive EI until he

turned three in October, and I work with him at home now. (We home

school all of our children.)

L

[Guest guest]

Thanks for the welcome Kathy and Holly! Printing out the articles is

a good idea. Our appointment with the PCP is set for January 12th, so

I have plenty of time to prepare.

6 kids does keep me busy, but it is a good busy. We are actually

expecting #7 in April or May!

L

[Guest guest]

Hi my name is

I have a 3 year old with DS and I believe he also has ASD I was told that it was

due to DS but I know that this is not true I just hope I can find information on

how to help him learn. I just joined the group a couple of weeks ago and am

trying to understand how to the group works. He is still not walking and I am

worried if he will ever be able to walk I was always told that he has low muscle

tone but that is just not enough info for me I remember the PT always said that

if  did not walk b-4 3yrs it would take longer after that its is becoming

extremely had to carry him for minutes he does not understand that he is getting

bigger and I cant hold him like I used to. I dint know what will happen next

year if he does not walk he signs baby and points to him self so I can hold him

it breaks my heart to think that I might get to a point were I cant rock him to

sleep.

[Guest guest]

Hi and welcome to our list. Whether he has DS-ASD or not, I hope

you are able to get OT/PT services for him???

Does he get speech services?

What part of the country are you in?

As to rocking him - I was still rocking my son sometimes - and he is 23! We

just sit on the counch and he rests his upper body on Mommy so we can rock

together!! Everyone at any age should be able to rock.

My son Elie is 23yo now. HE didn't walk until he was 3 years and 4 months.

And low tone is still an issue. But our PT told us that he would walk when

he reached the mental age appropriate for walking - and we have found that

most developmental skills - like walking and talking and feeding himself

camae as he reached those intellectual milestones. Not true for everyone

nor in every instances, but pretty much so for our son.

He only had 2 words until he was 4. He now speaks in 3 to 4 word sentances

- what we call sound bites. HE can be understood and he can make his needs

known. HE used sign and gradually lost it as he learned to make his needs

known with words. HE is also bilingual.

Try looking at the yahoogroups for us and you can search the archives for

topics you want more info on.

On Tue, Dec 30, 2008 at 11:27 PM, cynthia garcia wrote:

> Hi my name is

> I have a 3 year old with DS and I believe he also has ASD I was told that

> it was due to DS but I know that this is not true I just hope I can find

> information on how to help him learn. I just joined the group a couple of

> weeks ago and am trying to understand how to the group works. He is still

> not walking and I am worried if he will ever be able to walk I was always

> told that he has low muscle tone but that is just not enough info for me I

> remember the PT always said that if did not walk b-4 3yrs it would take

> longer after that its is becoming extremely had to carry him for minutes he

> does not understand that he is getting bigger and I cant hold him like I

> used to. I dint know what will happen next year if he does not walk he signs

> baby and points to him self so I can hold him it breaks my heart to think

> that I might get to a point were I cant rock him to sleep.

>

>

[Guest guest]

,

I used a side carrier that is made for larger babies. I used it until Jake was

at least 3 years old. It takes the weight off your arms and back. I bought

mine at Wal Mart or Target. I will see if I can find the one I used on line and

send a link.

Jake did not walk until late as most of our kids do not. Is he crawling,

pulling up on furniture or cruising around furniture holding on? Do you use an

exersaucer or walker (even though they all tell you not to, I used it all the

time). Personally, I think it helped Jake gain some strength. What motivates

him to move?

How often are you getting PT?

Holly

[Guest guest]

Welcome to our list.

We have families with members from infancy to around 40 ish. My son is 24

and now lives away from home with a similar age live in companion/friend to

help him in the community.

Check out the archives at yahoogroups.com/. for starters

On Fri, Aug 7, 2009 at 3:51 AM, Stuart Mills <

stuart.mills@...> wrote:

>

>

> Hi everyone,

>

> I'm Stuart and I work as an Information Officer for the UK Down's Syndrome

> Association (DSA). I staff our national helpline, answer email/written

> enquiries, advocate for parents and people with DS, write some of DSA's

> publications and provide face-to-face support and advice to parents who

> visit our national office. I have worked at the DSA for ten years.

>

> I recently set up an email forum for UK parents whose children have a dual

> diagnosis of DS/ASD. I am interested to learn from your experiences, I will

> certainly ask for your advice from time to time and I am eager to find new

> resources that parents in the UK will find helpful.

>

> Best Wishes

>

> Stuart

> Stuart Mills

> Information Officer

> Down's Syndrome Association

> Website: www.downs-syndrome.org.uk<http://www.downs-syndrome.org.uk/>

> T: 0 | F: 0

>

> Tell it Right, Start it Right - we want better information!

> High quality support should by law be given to parents after a diagnosis of

> Down's syndrome.

> To sign our petition, click here <

> http://petitions.number10.gov.uk/TellItRight/>

>

> ________________________________

> Helping people with Down's syndrome live full and rewarding lives

> *********************************************************************

> This email is confidential and intended only for the person(s) named above.

> If you have received it in error, please inform the sender and delete it

> from your system. Emails will be treated as confidential unless withholding

> information contained therein would place another person in danger.

> Every effort is made to provide accurate information, although the DSA does

> not guarantee this. This email may contain personal views that are not

> necessarily those of the DSA, unless specifically stated.

> The Down's Syndrome Association is a registered charity in England and

> Wales. Registered charity number 1061474, registered company number 3310024.

> Registered office: Langdon Down Centre, 2A Langdon Park, Teddington, TW11

> 9PS.

>

>