New member

[Guest guest]

Hi Sara - Welcome!

We have a 12 year old son w/ds & autism & Type 1 diabetes. We are in Delavan,

WI, not too far from Madison.

We are probably dealing with issues you have been through already, but it's

nice to know there are others close by.

Becky

jsricc wrote:

Good Morning,

I decided to look for a group like this as my son has been out of

high school a year and I have lost all connections. I'm getting the

impression I might have the oldest kiddo on the block?!? If nothing

else, I've 'been there-done that'; the phases that I was certain

would NEVER end, the fights with school, the isolation. Reading the

few posts that I have really takes me back to many days of despair,

and my son was not diagnosed early enough for any Autism

intervention. I believe I actually diagnosed him myself, We'd had

the same doctor for so long that he agreed with me and sent us to a

psychologist to make if official. Here's the Good News...he is 22

now, he works out of the home (with a job coach - 1 on 1) 28

hours per week. He is happy as happy can be. I am certain if the

Autism hadn't found him, he would be in assisted living. Expressive,

appropriate language is a huge hurdle, although when he speaks it

comes out very clearly. I was told he would have trouble with the 5

W's - who, what, when, etc...and he does. He can read & write (hates

to write)and reads constantly, real grown-up books, but if you ask

him his name he will probably say 'fish'! It's in there, but getting

it out takes patience. ANYWAY - if I had known then what I know now,

I would have relaxed more. I used to tell people I felt like I was

taking care of a sparrow with a broken wing -no love, no affection,

no eye contact, hiding in his room. Now he ends every exchange

with 'I Love You'! It's no trip to Disney, but I see much worse

situations every day of my life. My husband and I have an ongoing

debate- HUSBAND: The Autism has impaired his functioning enough that

he is not disappointed by what his is missing out on in life.

ME: True - but because of this so-called blessing, our lives, as a

couple, will be forever altered. We are nearing 50 and still caring

for an infant in some ways (and my back is killing me). Ben CANNOT be

left alone. He's not afraid of cars or butcher knives or stove

burners or scalding water. Take this with a grain of salt because

after 22 years of this, it's like taking my next breath, I don't even

have to think about it. I've rambled long enough. Thanks for

listening and I look forward to sharing. XOX - Sara - Wisconsin

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

Be a better pen pal. Text or chat with friends inside Yahoo! Mail. See how.

[Guest guest]

Hi Sara in Wisconsin,

Welcome, glad you came aboard.

I have not had time to respond to your post as I belong to several

other group list, catching up with what I could and was also emailing

a technology center as I am on a mission for my 19 y/o son who has a

dx'd with DS & AU to receive some of these services they have to offer.

Was dx'd at a late age of 13 y/o.

Fell through the school cracks for many years, once he reached Middle

school, finally the doors were opening, addressing a lot of the

challenges and once HS came around, huge regression once he reached

the 3rd year attending there. My son has benefit from a majority of

the private interventions outside of the school district which I am

still focusing on assisting him. Autism was all new to me when I came

across our moderators Joan Medlin's Disability Solution Newsletter.

I have had to empower myself by attending numerous workshops,

conferences & etc. so that I could make sure to implement whatever

needed at home, out in the community, especially for whatever area

needed once he ages out of the school system and have join several

committees to address now on the political issues which I have come

across when it involves the services and state funds or you could say

dealing with a foot a little over the fence to have some options of

which route to take. Looking forward reading your stories if you do

not mind sharing them about your journey.

My son is still currently attending the same school district but at a

Post-secondary center. Since the lack of being taught from his

elementary years and HS, Middle school was awesome!

I am focusing on some type of " Total Communication " here.

School wanted to focus only on preparation with certain job skills,

which I really do not mind as my son does not mind but in my eyes for

now I would like to focus on seeing some progress here with the basic

independent skills in order to function, even though I am aware of him

requiring some assistance once he ages out of the school system will

decrease in other areas and give me some sense of relief of how much

he can do which I know he can which he has proven.

Recently I attended an Open House at a Community College last Tuesday

evening, which provides a program a Technology & Inclusion program and

it was pretty interesting so this morning wanted to make sure to

address this and get his name on the wait list and get the paperwork

rolling with what I could.

In the mean time working on getting a communication device for him

from the same organization which is nice to know there is an

assistance program providing this service which I am really praying

that will work out.

Sorry to ramble on and really looking forward reading when you post.

Irma,19,DS/ASD

>

> Good Morning,

>

> I decided to look for a group like this as my son has been out of

> high school a year and I have lost all connections. I'm getting the

> impression I might have the oldest kiddo on the block?!? If nothing

> else, I've 'been there-done that'; the phases that I was certain

> would NEVER end, the fights with school, the isolation. Reading the

> few posts that I have really takes me back to many days of despair,

> and my son was not diagnosed early enough for any Autism

> intervention. I believe I actually diagnosed him myself, We'd had

> the same doctor for so long that he agreed with me and sent us to a

> psychologist to make if official. Here's the Good News...he is 22

> now, he works out of the home (with a job coach - 1 on 1) 28

> hours per week. He is happy as happy can be. I am certain if the

> Autism hadn't found him, he would be in assisted living. Expressive,

> appropriate language is a huge hurdle, although when he speaks it

> comes out very clearly. I was told he would have trouble with the 5

> W's - who, what, when, etc...and he does. He can read & write (hates

> to write)and reads constantly, real grown-up books, but if you ask

> him his name he will probably say 'fish'! It's in there, but getting

> it out takes patience. ANYWAY - if I had known then what I know now,

> I would have relaxed more. I used to tell people I felt like I was

> taking care of a sparrow with a broken wing -no love, no affection,

> no eye contact, hiding in his room. Now he ends every exchange

> with 'I Love You'! It's no trip to Disney, but I see much worse

> situations every day of my life. My husband and I have an ongoing

> debate- HUSBAND: The Autism has impaired his functioning enough that

> he is not disappointed by what his is missing out on in life.

> ME: True - but because of this so-called blessing, our lives, as a

> couple, will be forever altered. We are nearing 50 and still caring

> for an infant in some ways (and my back is killing me). Ben CANNOT be

> left alone. He's not afraid of cars or butcher knives or stove

> burners or scalding water. Take this with a grain of salt because

> after 22 years of this, it's like taking my next breath, I don't even

> have to think about it. I've rambled long enough. Thanks for

> listening and I look forward to sharing. XOX - Sara - Wisconsin

>

[Guest guest]

Good Afternoon,

I can probably give you some pointers, but you need to slow down a

bit. I feel like I am a high school drop out and you are a college

professor. What has worked for me may not work for you, but I am a

Lioness when it comes to my son - with reason. I am delighted to

correspond with questions, but I don't pretend that what worked for

me will work for everybody.

RULE #1: YOU ARE YOUR CHILDS ONLY AND BEST ADVOCATE - EVER- EVER!!!

> >

> > Good Morning,

> >

> > I decided to look for a group like this as my son has been out of

> > high school a year and I have lost all connections. I'm getting

the

> > impression I might have the oldest kiddo on the block?!? If

nothing

> > else, I've 'been there-done that'; the phases that I was certain

> > would NEVER end, the fights with school, the isolation. Reading

the

> > few posts that I have really takes me back to many days of

despair,

> > and my son was not diagnosed early enough for any Autism

> > intervention. I believe I actually diagnosed him myself, We'd

had

> > the same doctor for so long that he agreed with me and sent us to

a

> > psychologist to make if official. Here's the Good News...he is

22

> > now, he works out of the home (with a job coach - 1 on 1) 28

> > hours per week. He is happy as happy can be. I am certain if

the

> > Autism hadn't found him, he would be in assisted living.

Expressive,

> > appropriate language is a huge hurdle, although when he speaks it

> > comes out very clearly. I was told he would have trouble with

the 5

> > W's - who, what, when, etc...and he does. He can read & write

(hates

> > to write)and reads constantly, real grown-up books, but if you

ask

> > him his name he will probably say 'fish'! It's in there, but

getting

> > it out takes patience. ANYWAY - if I had known then what I know

now,

> > I would have relaxed more. I used to tell people I felt like I

was

> > taking care of a sparrow with a broken wing -no love, no

affection,

> > no eye contact, hiding in his room. Now he ends every exchange

> > with 'I Love You'! It's no trip to Disney, but I see much worse

> > situations every day of my life. My husband and I have an

ongoing

> > debate- HUSBAND: The Autism has impaired his functioning enough

that

> > he is not disappointed by what his is missing out on in

life.

> > ME: True - but because of this so-called blessing, our lives, as

a

> > couple, will be forever altered. We are nearing 50 and still

caring

> > for an infant in some ways (and my back is killing me). Ben

CANNOT be

> > left alone. He's not afraid of cars or butcher knives or stove

> > burners or scalding water. Take this with a grain of salt

because

> > after 22 years of this, it's like taking my next breath, I don't

even

> > have to think about it. I've rambled long enough. Thanks for

> > listening and I look forward to sharing. XOX - Sara - Wisconsin

> >

>

[Guest guest]

Hi Angel, glad you have join the listserve.

You will find some wonderful informational resource here that we could

all relate to.

Hope you find some answers towards on what you are noticing for your

child.

Someone has already posted in regards to the dual-dx's of DS & AU.

If you are reading from the list over on the left hand side under

links or files you will find some more information.

Here I am posting this for now.

Learn the Signs of Autism

http://www.autismspeaks.org/whatisit/learnsigns.php

Diagnosis

http://www.autismspeaks.org/whatisit/diagnosis.php

Welcome aboard.

Irma,19,DS/ASD

>

> hi! my name is angel and i have a 7 year old son with ds

> i was wondering what the signs for autism are with our kids.

>

>

[Guest guest]

>

> Good Afternoon,

>

> I can probably give you some pointers, but you need to slow down a

> bit. I feel like I am a high school drop out and you are a college

> professor. What has worked for me may not work for you, but I am a

> Lioness when it comes to my son - with reason. I am delighted to

> correspond with questions, but I don't pretend that what worked for

> me will work for everybody.

>

> RULE #1: YOU ARE YOUR CHILDS ONLY AND BEST ADVOCATE - EVER- EVER!!!

Sara,

LOL, no pun intended because this was just a wee bit.

Definitely will not want to overwhelm you on my mission.

Have been told on what you had mentioned but when the opportunities of

certain services or funds arises I must take advantage of it,

especially when you live in Texas.

I also understand on what you mean on whatever you post & understand

as our individuals are all unique & have challenging issues in their

own way.

It is always nice to hear how other states recommendation for

individuals living with their family or living out of the family home.

Sara from GA, has just posted on the yahoo group list she has shared,

so this is good where if you do not mind posting in regards to this

journey.

Thank you Sara's.

Irma,19,DS/ASD

[Guest guest]

thanks for the sites. i did check them out and i noticed

some of the things in issac but what do i do from here? he does

some of them alot and others every once in a while.

Re: new member

Welcome Angel, Hi hope you had a great Thanksgiving. There have been a

couple of reports done on this dual dx.The signs are really not any

different than a child that is just autistic. Signs: rocking,screaming

for no reason, OCD, hand flapping,little or no eye contact,not

responding to name. Check out these 2 different links

http://www.altonweb .com/cs/downsynd rome/index. htm?page= autismco. html

>http://www.altonweb .com/cs/downsynd rome/index. htm?page= autism.html

I hope this info helps you. Cyndi B

>

>

>

____________ _________ _________ _________ _________ _________ _

____________

> Never miss a thing. Make Yahoo your home page.

> http://www.yahoo. com/r/hs

>

>

[Guest guest]

Get a referral to see a developmental pediatrician and get

an " official " diagnosis. The diagnosis will help you get additional

services in school if you feel it's needed.

Ecki

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

http://oppositekids.blogspot.com/

>

> thanks for the sites. i did check them out and i noticed

> some of the things in issac but what do i do from here? he does

> some of them alot and others every once in a while.

>

[Guest guest]

how do i get the referral? should i talk to his dr about it? he thought

maybe it could adhd or something and im still waiting for our regional center

to get us a eval. should i do something else?

Re: new member

Get a referral to see a developmental pediatrician and get

an " official " diagnosis. The diagnosis will help you get additional

services in school if you feel it's needed.

Ecki

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

http://oppositekids .blogspot. com/

>

> thanks for the sites. i did check them out and i noticed

> some of the things in issac but what do i do from here? he does

> some of them alot and others every once in a while.

>

________________________________________________________________________________\

____

Be a better pen pal.

Text or chat with friends inside Yahoo! Mail. See how.

http://overview.mail.yahoo.com/

[Guest guest]

Angel, I would get the dx officially dx. This will help you move

forward.You need an autism expert to do this.Call your local autism

society to see if they can recommend a Dr. for this dx. I would get a

Dr. that is used to dx children that are autistic.How old is your

child? Cyndi B

>

> thanks for the sites. i did check them out and i noticed

> some of the things in issac but what do i do from here? he does

> some of them alot and others every once in a while.

>

>

> Re: new member

>

> Welcome Angel, Hi hope you had a great Thanksgiving. There have

been a

> couple of reports done on this dual dx.The signs are really not any

> different than a child that is just autistic. Signs:

rocking,screaming

> for no reason, OCD, hand flapping,little or no eye contact,not

> responding to name. Check out these 2 different links

> http://www.altonweb .com/cs/downsynd rome/index. htm?page=

autismco. html

> >http://www.altonweb .com/cs/downsynd rome/index. htm?page=

autism.html

> I hope this info helps you. Cyndi B

> >

> >

> >

> ____________ _________ _________ _________ _________ _________ _

> ____________

> > Never miss a thing. Make Yahoo your home page.

> > http://www.yahoo. com/r/hs

> >

> >

[Guest guest]

We got a referral from our regular pediatrician. Of course, we're in

an HMO, so we have to get a referral for everything! Depending on

where you are, it could take while to get an appointment with a

developmental pediatrician, especially one familiar with Down

syndrome/Autism dual diagnosis.

Ecki

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

http://oppositekids.blogspot.com/

>

> how do i get the referral? should i talk to his dr about it? he

thought

> maybe it could adhd or something and im still waiting for our

regional center

> to get us a eval. should i do something else?

>

>

> Re: new member

>

> Get a referral to see a developmental pediatrician and get

> an " official " diagnosis. The diagnosis will help you get additional

> services in school if you feel it's needed.

>

> Ecki

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

> http://oppositekids .blogspot. com/

[Guest guest]

We went to center in Chapel Hill, North Carolina that specialises in

diagnosis and support of Austism.

The TEACCH Center. The National Autism Society is another place you could

look for referrals for places that may be in your range.

**************************************Check out AOL's list of 2007's hottest

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[Guest guest]

Welcome Sara! My son is 13 and was diagnosed at age 4. He is in an

Autism program but we still haven't gotten most of the school staff to

realize that there is someone capable in there. They just see the lack

of functioning and label him MR. ! I'm really interested in how

your son learned to read. had about 20-30 sight words at

age 5 but since his language declined so rapidly he has been unable to

demonstrate any comprehension of text and the school has pretty much

given up on anything but letter recognition which he could do since he

was 3. Any advice you or anyone else out there has about reading

would be welcome.

Kim Amenabar

[Guest guest]

Hi

I helped my son get interested in reading by printing out his favorite

songs...including the songs from " Grease " ...yikes some of those words in

" Greased Lightnin " ...alsoI put the " closed caption " option on the TV and all of

the shows(or most of them anyway). Plus read anything to the kids that they are

interested in)(cereal boxes?) Make up little stories about their favorite

subjects..Wizard of Oz worked for my son. There are also companies on line that

will make a " personal " book for you.

Hope it helps.

Brigid

Re: New Member

Welcome Sara! My son is 13 and was diagnosed at age 4. He is in an

Autism program but we still haven't gotten most of the school staff to

realize that there is someone capable in there. They just see the lack

of functioning and label him MR. ! I'm really interested in how

your son learned to read. had about 20-30 sight words at

age 5 but since his language declined so rapidly he has been unable to

demonstrate any comprehension of text and the school has pretty much

given up on anything but letter recognition which he could do since he

was 3. Any advice you or anyone else out there has about reading

would be welcome.

Kim Amenabar

[Guest guest]

My son had such a wonderful elementary staff and they worked their

behinds off and taught him how to do everything. Phonics was out of

the districts, but it was brought back by private tutors called

the 'Orton Gillingham Program'. It is Intense Phonix taught by private

tutors, but the aides in Bens classroom were trained in the method and

made money on the side tutoring.

When I say Ben can read and read grown-up books, WELL - I should

probably quantify that: he can read almost anything, but his

comprehension SUCKS. He can SOUND-OUT almost any word you could put in

front of him, but the meaning is frequently meaningless to him.

I don't know what he gets out of the books he chooses, but we visit the

library 3 X's a week, and he know EXACTLY what he wants.

>

>

> Welcome Sara! My son is 13 and was diagnosed at age 4. He is in an

> Autism program but we still haven't gotten most of the school staff to

> realize that there is someone capable in there. They just see the lack

> of functioning and label him MR. ! I'm really interested in how

> your son learned to read. had about 20-30 sight words at

> age 5 but since his language declined so rapidly he has been unable to

> demonstrate any comprehension of text and the school has pretty much

> given up on anything but letter recognition which he could do since he

> was 3. Any advice you or anyone else out there has about reading

> would be welcome.

>

> Kim Amenabar

>

[Guest guest]

We learn to read by memorization, and symbols. Start slowly putting

site words on objects like the word chair on the chair he sits in. Or

if he cannot pick out his name put his name on the chair where he

sits.Before he sits down show him his name and point to him and say

you are and I am momma. Take his name and let him pick

between your name and his name.He has to hand you his name.Do the

same with an object like the toothbrush.Show him the picture of

toothbrush with the name underneath and say toothbrush.Show two

pictures one of a toothbrush and one of a cup ask him to give you the

toothbrush. After a while lay the pictures of the objects down and

have him match the word to the object. My cannot talk but he

reconizes symbols for instance.He will bring me the box to a movie

and want that movie.If I give him the wrong movie he will let me no

but once I had him the right movie he will accept.Example Disney is

really good about making the title of the movie the same on the box

as it is on the actual movie.For instance the word Nemo is the same

on the box and actual video. picks up on this. I hope this

helps.Start slow and progress as he does. Cyndi B

>

> My son had such a wonderful elementary staff and they worked their

> behinds off and taught him how to do everything. Phonics was out

of

> the districts, but it was brought back by private tutors called

> the 'Orton Gillingham Program'. It is Intense Phonix taught by

private

> tutors, but the aides in Bens classroom were trained in the method

and

> made money on the side tutoring.

>

> When I say Ben can read and read grown-up books, WELL - I should

> probably quantify that: he can read almost anything, but his

> comprehension SUCKS. He can SOUND-OUT almost any word you could

put in

> front of him, but the meaning is frequently meaningless to him.

> I don't know what he gets out of the books he chooses, but we visit

the

> library 3 X's a week, and he know EXACTLY what he wants.

>

>

> >

> >

> > Welcome Sara! My son is 13 and was diagnosed at age 4. He is in

an

> > Autism program but we still haven't gotten most of the school

staff to

> > realize that there is someone capable in there. They just see the

lack

> > of functioning and label him MR. ! I'm really interested in how

> > your son learned to read. had about 20-30 sight words

at

> > age 5 but since his language declined so rapidly he has been

unable to

> > demonstrate any comprehension of text and the school has pretty

much

> > given up on anything but letter recognition which he could do

since he

> > was 3. Any advice you or anyone else out there has about reading

> > would be welcome.

> >

> > Kim Amenabar

> >

>

[Guest guest]

We used Writing with Symbols, 2000. Elie does really well reading symbols -

even written into stories (as long as I don't change the picture). I always

write the stories with the words underneath, but even when he knows the

story cold from the pictures, he cannot read most of the words.

> We learn to read by memorization, and symbols. Start slowly putting

> site words on objects like the word chair on the chair he sits in. Or

> if he cannot pick out his name put his name on the chair where he

> sits.Before he sits down show him his name and point to him and say

> you are and I am momma. Take his name and let him pick

> between your name and his name.He has to hand you his name.Do the

> same with an object like the toothbrush.Show him the picture of

> toothbrush with the name underneath and say toothbrush.Show two

> pictures one of a toothbrush and one of a cup ask him to give you the

> toothbrush. After a while lay the pictures of the objects down and

> have him match the word to the object. My cannot talk but he

> reconizes symbols for instance.He will bring me the box to a movie

> and want that movie.If I give him the wrong movie he will let me no

> but once I had him the right movie he will accept.Example Disney is

> really good about making the title of the movie the same on the box

> as it is on the actual movie.For instance the word Nemo is the same

> on the box and actual video. picks up on this. I hope this

> helps.Start slow and progress as he does. Cyndi B

> >

> > My son had such a wonderful elementary staff and they worked their

> > behinds off and taught him how to do everything. Phonics was out

> of

> > the districts, but it was brought back by private tutors called

> > the 'Orton Gillingham Program'. It is Intense Phonix taught by

> private

> > tutors, but the aides in Bens classroom were trained in the method

> and

> > made money on the side tutoring.

> >

> > When I say Ben can read and read grown-up books, WELL - I should

> > probably quantify that: he can read almost anything, but his

> > comprehension SUCKS. He can SOUND-OUT almost any word you could

> put in

> > front of him, but the meaning is frequently meaningless to him.

> > I don't know what he gets out of the books he chooses, but we visit

> the

> > library 3 X's a week, and he know EXACTLY what he wants.

> >

> >

> > >

> > >

> > > Welcome Sara! My son is 13 and was diagnosed at age 4. He is in

> an

> > > Autism program but we still haven't gotten most of the school

> staff to

> > > realize that there is someone capable in there. They just see the

> lack

> > > of functioning and label him MR. ! I'm really interested in how

> > > your son learned to read. had about 20-30 sight words

> at

> > > age 5 but since his language declined so rapidly he has been

> unable to

> > > demonstrate any comprehension of text and the school has pretty

> much

> > > given up on anything but letter recognition which he could do

> since he

> > > was 3. Any advice you or anyone else out there has about reading

> > > would be welcome.

> > >

> > > Kim Amenabar

> > >

> >

>

>

>

--

Sara - Life is a journey- we choose the path.

[Guest guest]

A developmental ped suggested (who is 8 now) might have autism when he was

about 3, but it was very iffy, and very soon after that, he got leukemia, and

was so very diminished by the chemo that we didn't think much about it. We were

more concerned with keeping him alive. It wasn't until a few months off

treatment, when the " real " began to emerge out of the fatigue and

depletion, that we started to see clear signs of the autism and got the

diagnosis.

Like you, is very different than peers with DS. Very different, too, than

peers with autism. We have a unique little group. Glad you found this list.

You'll find much relief just finding others who have similar stories.

Beth

new member

Hi,my name is le mom to Cole 8, e 5 ds/asd , and 4

months. This is the first time that I have joined a support group, so

I'm sorta new to this.We live in the Buffalo Ny area and boy is it

cold here. So let me tell you a little bit about e. She was first

diagnosed with autism @ about age 3. Of course she started to show

signs when she transitioned from EI to preschool and the new teachers

did not recognize the signs because they didn't know her prior.So as

you can imagine this was a frustrating time for us. I would look at

the other kids with ds and notice a big difference between them and

e. The teachers told me not to compare. How could I not compare

when the other children knew me as kylee's mom and she did not. When I

took e to the developmental ped about 6 months later he confirmed

what I had all ready suspected, that she was also autistic. It was

actually a relief because I was questioning if it was all in my

head.Now e is five and in a different school and we are all on the

same page. What a great feeling to have the school agreeing with

you.Does anyone else have a child diagnosed this young?

[Guest guest]

Hi le,

I'm , Mom to who is 4 1/2 DS ASD and Addyson 7.

It's cold here too!!!! We could be in for our third snow day in a

row. PLEASE NO!!! Sorry. A little bit of cabin fever.

was just diagnosed last month. I was going crazy as well when

seemed to lag behind everyone in EI. He was very delayed in

every way. It was so incredibly sad. He didn't care about the other

kids and had all kinds of strange stim behaviors. He loved to bite

everyone and pull hair every chance he got. Another fun trick he had

was grabbing your glasses off your face and beating you with them.

We gave out cards to our Optometrist for free adjustments. lol Now

he's in a

dev. preschool doing very well. We are probably going to transition

into Kindergarten next year since he'll have all day services. Not

looking forward to the change but I know it will be great for him.

Welcome and try to stay warm!

>

> Hi,my name is le mom to Cole 8, e 5 ds/asd , and 4

> months. This is the first time that I have joined a support group,

so

> I'm sorta new to this.We live in the Buffalo Ny area and boy is it

> cold here. So let me tell you a little bit about e. She was

first

> diagnosed with autism @ about age 3. Of course she started to show

> signs when she transitioned from EI to preschool and the new

teachers

> did not recognize the signs because they didn't know her prior.So as

> you can imagine this was a frustrating time for us. I would look at

> the other kids with ds and notice a big difference between them and

> e. The teachers told me not to compare. How could I not compare

> when the other children knew me as kylee's mom and she did not.

When I

> took e to the developmental ped about 6 months later he

confirmed

> what I had all ready suspected, that she was also autistic. It was

> actually a relief because I was questioning if it was all in my

> head.Now e is five and in a different school and we are all on

the

> same page. What a great feeling to have the school agreeing with

> you.Does anyone else have a child diagnosed this young?

>

[Guest guest]

I just received my email about joining this group, so I'm replying with the info requested, cut and pasted as sugeested.

 

1. What is your name?  Terry

2. What are the first names of your children and how old are they? I have 3 children -- Rory (6), (4) and (19 mos)

3. Which child/children has Down syndrome? I am expecting identical twins who have been diagnosed (amnio) with Down syndrome.  My due date is April 1, 2010.

4. Which state or country do you live in? Pennsylvania

5. Anything else you want to tell us?  Just that it feels like the rest of this pregnancy is turning into an anxiety tolerance test!  Both babies have AV canal defects, and we've met with the specialists about that, then we get the diagnosis of Down syndrome, and we get through that, and then last week the perinatologist tells me there's a 1 in 4 chance of stillbirth.  And I just want to be able to reach out to others who've had twins and know that they can make it through all this.  I'd appreciate any info anyone has about how to prepare for the birth and early infancy under these circumstances, and I'd love to hear how you handled all this with older siblings as well.

 

Thanks. 

 

 

[Guest guest]

Judi,

Thank you, and I wish a happy and healthy 2011 to you and your family!

Terry

 

Hi Terry - I'm Judi, mom to Sam and , identical twins w/DS who just turned 14 yesterday! S & P were born about 14 weeks early (my due date was April 2nd). They weighed slightly over 2 lbs each at birth, had a very long NICU stay. Unlike you, I didn't have a prenatal Dx. We found out they had DS when they were about a month old.

Your twins can make it through all of this! I hope the group will be a place of encouragement and support for you.Judi

>> I just received my email about joining this group, so I'm replying with the

> info requested, cut and pasted as sugeested.> > 1. What is your name? Terry> > 2. What are the first names of your children and how old are they? I have 3> children -- Rory (6), (4) and (19 mos)

> > 3. Which child/children has Down syndrome? I am expecting identical twins> who have been diagnosed (amnio) with Down syndrome. My due date is April 1,> 2010.> > 4. Which state or country do you live in? Pennsylvania

> > 5. Anything else you want to tell us? Just that it feels like the rest of> this pregnancy is turning into an anxiety tolerance test! Both babies have> AV canal defects, and we've met with the specialists about that, then we get

> the diagnosis of Down syndrome, and we get through that, and then last week> the perinatologist tells me there's a 1 in 4 chance of stillbirth. And I> just want to be able to reach out to others who've had twins and know that

> they can make it through all this. I'd appreciate any info anyone has about> how to prepare for the birth and early infancy under these circumstances,> and I'd love to hear how you handled all this with older siblings as well.

> > Thanks.>

[Guest guest]

,

Thanks for the contact, and your info!

I live outside of Philly, so we have already been to Children's there, and I will deliver there as well, as they have a Special Delivery Unit for mothers with fetal diagnoses -- I can't tell you how much it means to me to know that the babies' care will be all in one place, that I will be there too, and that it will be so coordinated from before their birth. 

It's interesting to hear what you say about the identical twins with DS, because the doctors are really interested in this. 

Otherwise, I'm trying to get our family organized for the birth and the upcoming craziness.  I feel pretty good, although I'm out of breath a lot.  My doctor wants me to stop working soon, so I have to have that conversation at work this week. 

Have a happy and healthy 2011,

Terry

 

Hello Terry,Welcome from another PA mom.  I have five children with my last two being 5 year old identical twin boys both with DS.  I goto Pittsburgh Childrens for most of their care and we were told a few years back that we were only the fourth set of ID twins both having Ds that the Down Syndrome Clinic knew of born in PA.  Interesting

What part of PA are you from?  I live in DuBois, central PA.My guys were 9 weeks early.  I did not know about the Down Syndrome until they were like two weeks old.  Life is busy these days, but I agree with Maggie, I think its double trouble kinda stuff right now.  Congratulations on your twins.  I look forward to following your pregnancy and beyond!!

Mom to FiveTristin 13Camille 9Elijah 7Caleb and Isaac 5, twins with DS  

Welcome to the group. So glad you found us. I am mom to 4 children. Amy is 23 and just graduated college. Kelsey is 20 and is in college. Davey and Will are 10. Davey has DS. 

There are a couple if families on the list that also have identical twins with DS. Please feel free to ask any questions. We have all been there. 

Congratulations on your pregnancy!

PS. We love photos. 

 

I just received my email about joining this group, so I'm replying with the info requested, cut and pasted as sugeested.

 

1. What is your name?  Terry

2. What are the first names of your children and how old are they? I have 3 children -- Rory (6), (4) and (19 mos)

3. Which child/children has Down syndrome? I am expecting identical twins who have been diagnosed (amnio) with Down syndrome.  My due date is April 1, 2010.

4. Which state or country do you live in? Pennsylvania

5. Anything else you want to tell us?  Just that it feels like the rest of this pregnancy is turning into an anxiety tolerance test!  Both babies have AV canal defects, and we've met with the specialists about that, then we get the diagnosis of Down syndrome, and we get through that, and then last week the perinatologist tells me there's a 1 in 4 chance of stillbirth.  And I just want to be able to reach out to others who've had twins and know that they can make it through all this.  I'd appreciate any info anyone has about how to prepare for the birth and early infancy under these circumstances, and I'd love to hear how you handled all this with older siblings as well.

 

Thanks.