Introductions coming!!!

[Guest guest]

Hi, I am Sara C. mother of 6 with our youngest, Elie age 22 yo male with dx

of DS/ASD?/PDD-nos?. We got the secondary dx which has become the primary

when he was 12yo!!!! At birth Elie had meconium aspiration and atresia of

the duodenum, pancreas, jejunum, esophogus. He had surgery at 23 hr .

Pneumonia 12 times before age 3, 10 times after that until age 10. Then

basically healthy except for sleep apnea. Surgery for tear duct creation,

T & A together. Pneumonia once at age 19 - almosst died that time because he

became sick and deathly ill in a matter of 3 hours. Healthy since - not

even a cold.

Talks, walks, toilet trained completely at age 15. Cannot be left alone

ever as he knows no straangers, doesn't understand danger. USed to wander

away regularly and get losst. Doesn't now.

Now works thru a sheltered community. Loves his life. Is hooked on

checking his clandaar daily as to what is going on.

We live in the Georgia mountains and are retired.

Aren't you sorry you asked??? :`)

On Tue, Apr 1, 2008 at 7:13 PM, <

samanthanicolescloset@...> wrote:

>

>

> Hi! I am trying to get everyone straight on here but sometimes I get

> confused. Is there a way that everyone can kind of post a little intro

> about themselves and their children and what all dx they have. That way I

> can save them so I know who goes with who. Thank you :-)

>

>

>

>

[Guest guest]

LOL.......

I am Dylan's deaf mother.. Dylan is 9 yrs old with

deaf , ds and adhd.. Dylan goes to year round school

in va beach, va. We are working on Dylan get habit to

go bathroom lol. So far few days successful. It is

soo exicting.. He keep getting my attention said

bathroom. I said why not u go urself ??? lol.

His behavior is so so for now. But wild BOY !!!

He have been rolled all over the carpet since this

beggining of the year I think. We also working on Him

to sleep alone start few days ago.. I leave big light

on and let him watch movies he wanna watch before he

go sleep. That is my goal for him. Also, We might get

him ready before going to deaf school maybe in middle

school. I dont know for sure. I cant predict how well

he will be when he gets older. My hubby and I felt

that Dylan is getting there.. But at school wild boy

refused to do work.. MMMMM.. He is still on spring

break. Back to schoool will be on april 14.. Exicting

for him.. He asked me daily school tmw. NOpe.. I

rabble alot .. Right spelling ?? I involved

seac(special education advocacy committee) in va

beach. I also involved deaf community.. I only work on

fridays to deliver auto trader books.

Anything I miss ???

Dylan 9yrs deaf adhd ds.....

________________________________________________________________________________\

____

You rock. That's why Blockbuster's offering you one month of Blockbuster Total

Access, No Cost.

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[Guest guest]

Hi ,

I am Viola, we currently live in Ct. I have 3 children, Tammy is 24, Tania

is 21, and will be 16 in May. has down syndrome and was dx with

PDD (nos) at the age of 11. He exhibited NO autistic behavior until the age

of 9.

walked at 2 yrs 2 months, and was completely urine and bowel trained by

age of 5. is verbal, has no behavior issues and is the love of ALL of

our lives.

No medical issues, other then being born with an omplecle that was repaired

the day he was born in one operation.

is very slim he is 4.11 and weighs 95 pds.

has very severe sensory problems, and needs a strong sensory diet. you

can look at our pics on the website.

Viola

**************Create a Home Theater Like the Pros. Watch the video on AOL

Home.

(http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & ncid=aolhom00030\

000000001)

[Guest guest]

I am, wife and mother to 3 sons, is my youngest with the dual

dx's of DS & AU +. We are in San , Texas.

I have been a huge part of 's world and I know my life would be

no fun without him, it would be boring but instead have had an

attitude adjustment thanks to my son.

Sounds corny but at first I adored my son and was trying to learn what

I could about DS but life always found a way with the " W " questions,

on the why me when having to deal with daily challenges as he kept

getting older.

When was 12 y/o, I almost threw in the towel as I no longer

wanted to deal with the challenges thrown my way, which were alot.

Until one year I lost one of my Dear nephews at the age of 10 y/o in a

car accident and when I would confront my brother-in-law and his wife

who lost their only son and they would ask about their nephew ,

this was my reality call of how selfish I had been when knowing how

they are, they probably would not mind being in my shoes dealing with

what I was undergoing than not having a son anymore.

So I ended up investing into a computer, was glued to it day and

night, until I ran into the Disability Solutions Newsletter and you

could say my prayers were answered to where I am now as this is what I

have been doing since- eating, breathing and sleeping autism when my

son was dx'd at the age of 13 y/o with autism.

I never heard or knew about this side of the arena.

Sure enough this was the key on finding numerous of solutions needed

on every challenge given.

My son is 19 y/o, will turn 20 y/o in July.

I have now become a huge part now getting involved with the adult

issues and have become one of the Founders for an Adult support group

here in SA, such a demand that it continues to grow.

Most of all is that many agencies and one of our local Senator have

been supportive and are sending the information out of the support

group. I continue to pinch myself as I can not believe the impact of

what my son has given me.

I have been involved with one of the local committees and have been

attending several Stakeholder committee meetings traveling out to the

State Capitol, to make sure that my son's lifelong care, that I

contribute being part of including my input towards when proposals

like with the Medicaid Waiver funds are involved to have a piece of

the pie for as long as I can.

I once upon use to cry so much when having to learn about the DS, then

it was having to learn about how to deal with numerous doctors and

then there is Special Education, then having to learn about the

therapy involved, then everything else that fell within, like eating,

self-help skills, toilet training, how to cope and adapt with the

behavior issues, then given another added dx of autism, here I go

learning about ABA, Sensory integration, visual support, technology,

ministry, special diets, alternative bio-med intervention,

supplements, other medical dx's added to learn and work around and now

the transition into the adult issues. Guardianship, Wills, Special

Needs Trust, the Medicaid Waiver programs the do's and don't's, & SSI

,etc., etc.

So it has been a journey wearing many hats but all worth it!

When you have some time read an incredible article that one of

's brother Rick wrote about him on the DSA newsletter and there

is also a pic of .

" Meet " is on page 8.

http://www.dsasa.org/newsletters/newsletter_01_08.pdf

Enjoy!

Irma,19,DS/ASD

[Guest guest]

Hi,My name is Terry. My son is 10 and will be 11 in June. He has

ds/autism/epilepsy. He is nonverbal but lets everyone know exactly what he wants

in no uncertain terms. We live in NJ. I have 3 older children, 26, 22 and 16.

started having seizures shortly before his 5th birthday and had a very

hard couple of years. Thank God he is now controlled. He had drop seizures that

were horrible for about a year and every other seizure type there is. I started

home schooling him due to his seizures and have continued since. He is doing

great. Even though he can't talk, he can work any electronic or toy you put in

front of him. He is the happiest kid and we all love him to pieces.Welcome to

the group!Terry

[Guest guest]

Hi Terry,

Our family lives in Northern NJ (Livingston)- where do you live?

Best,

Mom to 4yrs. old

DS-PDD/NOS

To: @...: terese11@...: Wed, 2 Apr 2008

18:15:33 +0000Subject: Re: Introductions coming!!!

Hi,My name is Terry. My son is 10 and will be 11 in June. He has

ds/autism/epilepsy. He is nonverbal but lets everyone know exactly what he wants

in no uncertain terms. We live in NJ. I have 3 older children, 26, 22 and 16.

started having seizures shortly before his 5th birthday and had a very

hard couple of years. Thank God he is now controlled. He had drop seizures that

were horrible for about a year and every other seizure type there is. I started

home schooling him due to his seizures and have continued since. He is doing

great. Even though he can't talk, he can work any electronic or toy you put in

front of him. He is the happiest kid and we all love him to pieces.Welcome to

the group!Terry

[Guest guest]

Hi ,We live in Edison. My husband is a contractor and has done a lot of

work in Livingston. You might know some of his customers. The only names I can

recall right now are Donna and Barry Shaw and Gay and Lawrence Pecker.Terry

[Guest guest]

Hello,

My name is Carla and I have 2 daughters. is 12 and is 7. We

live in Northeast Missouri. has DS and autistic behaviors but we

have not went through the full process to have a autism diagnosis. She

also had a heart defect corrected when she was 5 months old and wears

hearing aids. We have many sensory problems and her speech is still

pretty hard to understand. I also cannot say she is really potty trained

yet. I had a comment just yesterday from a teacher at the school that said

just gets so excited when she sees people she knows and waves while

grinning ear to ear. They said it just cheers up everyone who is nearby.

She is a joy. I can't think of any other way to describe her. It is good

to have you in the group. I am a fairly new member too.

Carla

> >

>

[Guest guest]

Also tried to remove the posting on the database from 7 years ago!!!

Couldn't do that. Might I also suggest that we add a column of

transition/housing ideas// plans? We have older children on this list and

would like to see what other people are doing after school educational

plans are done.

> Hello,

> My name is Carla and I have 2 daughters. is 12 and is 7. We

> live in Northeast Missouri. has DS and autistic behaviors but we

> have not went through the full process to have a autism diagnosis. She

> also had a heart defect corrected when she was 5 months old and wears

> hearing aids. We have many sensory problems and her speech is still

> pretty hard to understand. I also cannot say she is really potty trained

> yet. I had a comment just yesterday from a teacher at the school that said

> just gets so excited when she sees people she knows and waves while

> grinning ear to ear. They said it just cheers up everyone who is nearby.

> She is a joy. I can't think of any other way to describe her. It is good

> to have you in the group. I am a fairly new member too.

>

> Carla

>

> > >

> >

[Guest guest]

I'm Beth. I have three boys, 15, 12, and 8. They are all really wonderful and

make me proud. I have a good hubby Brad. I'm blessed. is 8, had DS, got the

autism diagnosis last summer, and battled through leukemia treatment from Oct.

03 to March 07. He has feeding issues, is gtube fed at night, is 37 pounds at

age 8, has hypotonia, and high tone hearing loss, probably from the chemo. He

stims a lot and has a lot of vocab but it's mostly locked inside. His nonverbal

IQ is actually low average. But he can't really have a conversation and is

considered mostly nonverbal. He will say lots of rote phrases, like Bye, have a

nice day; Hi, how are you; etc. Not really appropriately yet, but we're working

on it. He knows numbers and letters. He loves music, TV and dancing. He loves to

swing. He has the most beautiful smile, giggle, and he is full of hugs. He has

no problem with eye contact and will engage if encouraged, though he also is

happy to spend time alone and retreat. He's inspired me to start a large special

needs ministry and community outreach network. I find it hard to express what a

joy he is to our lives. I don't mean it's always easy, but it's always so worth

it, and he's such a sweet tempered little guy. I'm blessed. We are in Indiana.

Beth

[Guest guest]

Hi Terry,

Thanks for getting back to me- no, I don't know those folks, but it's

interesting that your husband works in town.

I heard that there is a very active and large Down Syndrome support group in

central Jersey, I just can't recall which town it is located in.

The ARC of Essex county is here in Livingston and it happens to operate my son's

school, Stepping Stones, which is for children w/ DS and other developmental

disabilities. The town is very supportive of individuals w/ disabilities and

runs all kinds of programs. The school district has also been cooperative in

providing for each of 's needs, which is so refreshing, compared to where

we lived before (Mount Olive township- County), hence, the reason why we

moved to Livingston.

Our high tax dollars are fortunately working in our favor!

Perhaps we may cross paths sometime.

All the best to your family,

Mom to , 4 yrs. old

DS/PDD-NOS

To: @...: terese11@...: Wed, 2 Apr 2008

20:55:30 +0000Subject: Re: RE: Introductions coming!!!

Hi ,We live in Edison. My husband is a contractor and has done a lot of

work in Livingston. You might know some of his customers. The only names I can

recall right now are Donna and Barry Shaw and Gay and Lawrence Pecker.Terry

[Guest guest]

HI

I'm Diane and so far, from the other introductory posts, I'm the only

Canadian! Unless I missed someone! I do know of a couple of other families

with kiddos with the dual dx here in Ontario, but haven't seen or heard from

them in quite a while.

Aidan turned 13 in February and, along with the dual dx, is visually impaired.

Aidan had a rough start to life being diagnosed with DS inutero as one of a set

of fraternal twins. His birth family decided then and there that they were

unable to care for him so arrangements were made with our local gov't adoption

agency to have a foster family ready and waiting when he was born.

Dr's also detected a severe bowel blockage prenatally so once born, Aidan was

immediately transferred to a different hospital and had surgery. mom was

(and still is) amazing and by coincidence was the same who cared for our first

son 2 years earlier until we adopted him.

Aidan came to live with us when he was 5 months old - a hot July day, him

sweating due to heat and his significant heart defect, with his crossed

beautiful dark brown eyes, his little tongue sticking between his lips, looking

like he had 3 lips and the remenants of pock marks from one of the worst cases

of chicken pox the Ped had ever seen on a baby!! My heart could not have felt

fuller as , then 2, ran to him him yelling " my baby bruver " .

Anyhow - alot of time has passed - heart surgery, cataract surgery, testicle

surgery, adnoid(sp?) surgery - and he has come a long way from that day.

Aidan was dx'd with Autism at about age 7 - just past the cutoff here in

Ontario for gov't ABA programs (run until 6). But he loves school - in a

self-contained classroom but with integration for gym, music and his weekly job

of delivering pizza to the whole school every Thursday! He swims like a fish

and loves music and being read to. Aidan does not print letters or numbers but

can verbally count and recite the alphabet. And he toilet trained himself 2

years ago about the time I decided it just wasn't a big deal!!

, his big brother is 15, was also adopted as an infant but diagnosed

between ages 7-12 with ADHD, FASD, PDD-nos and Bipolar Disorder. But they love

each other dearly and even during the most chaos, manage to make me smile - even

through my tears!!

And Dave is my other half - married 25+ years and today he is 50!!

Nice to meet everone!!

/diane

st thomas ontario canada

diane

“ You must be the CHANGE that you want to see in the world” -- Mahatma Gandhi