Re: repeat DS

[Guest guest]

I believe the information in these 2 links is still valid.

http://www.ds-health.com/benke.htm

http://www.ds-health.com/prenatal.htm

Also believe I've seen the risk of recurrence stated in different ways.

Dr. Benke says 1 in 100 or double the risk for age, whichever is

greater. I've seen it given as risk for age plus 1%. But think those

often work out not too different. -- Bob

[Guest guest]

Dunno about the latest, but when I was pregnant with my daugher, now

18 mos old, they told me that my chances as a " repeat " mom, versus

other moms my age who didn't have a child with DS, were about 1%

higher (I'm over 35). They said that this number was really just a

" cover your butt " and that there really doesn't seem to be any difference.

Annika is fine.

>

> Without getting into the whole amnio and should a woman test or not,

> what are the chances of having a 2nd baby with Down syndrome? I have a

> condition called Neurofibromatosis Type 1, and with each child, I have

> a 50% chance of passing it on, regardless of my age. But I thought I

> heard lately that age does not matter for a woman to pass on DS. I

> know many mothers under 30 who have had DS babies. Just curious what

> the latest info is.

>

>

[Guest guest]

Up to age 40, it's about 1%. After that, it goes up with age-related risk. I

just happen to be volunteering today at the DS clinic here, and asked the nurse

practicioner that runs the clinic.

Carole, mom to , 11 1/2

Dallas, TX

[Guest guest]

Before I had my son w/DS at age 32, my chances were about 1/700. No

one in my huge family had a child with Down Syndrome. The geneticist told me

afterward that at age 33, my chances were about 1/100, but as I got older they

went way up. For example by the time I was 40 they would be 1/25.

Fortunately we had already had our daughter, who is very bright ( & " normal " ),

so we

opted out of having any more kids.

The geneticist said she didn't know exactly why our chances went up, but

based on statistics our chances are higher. I do know a family who has 2 kids

with DS. It seems like of the families that I know, many of them are either

pretty much done with child-bearing when they have a child with DS or they

decide that they are. Please don't be offended, this is my OPINION, but

whenever I see a pregnant mom of a child with Down Syndrome, I think of how

brave

they are to do it again. For those of you who have adopted, I think you are

wonderful. I didn't choose this life, but you did and some of you have

multiple kids with various disabilities. My hat is off to you. I'm not a very

patient person, but my son has forced me to learn it.

We are thinking about coming to Indianapolis & if so, I would love to meet

those of you who are there.

- KCMO,

mom to 15 DS, ASD PDD-NOS

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

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

[Guest guest]

, Hi my name is Cyndi and my son 12 has DS/autism.I was

31 when I had my son and the Dr. did not suspect anything. I did some

bleeding and I felt that my body was trying to abort the baby so I

called the Dr. and asked him to do another ultrasound.The ultrasound

was going fine and I was about to be dismissed when my husband asked

the ultrasound tech,does our child have 10 fingers and toes and

everything a little boy should have? The ultrasound tech that we were

hiding genetic defects in our family without coming out and saying

that at the time.The tech went to get a high risk Dr. to look at the

ultrasound because of my husbands questions and not because of

something she saw.The high risk Dr. said based on the fact that his

legs look short into the circumfrence of his head I had a 2% chance

of having a child with DS.I called my Dr. and was upset.He told me he

would look at everything and get back with me and when he did this is

what he said. " I have looked at everything and your baby is going to

be fine afterall you had a perfectly healthy baby the 1st time " .They

missed so much his heart defect, the Down Syndrome, and letting me

lay so long I had to have him natural child birth.In my small circle

of existing friends after 's birth both of them had children with

DS and both of their children was the second child and not the

first.My mother was 35 when she had me and I am not Ds.I think not

only is autism on the rise but so is Ds. I belong to the local Ds

group and myself with 2 others had tried to have meetings about DS

and autism but we 3 are the only ones who show up.I would love to

expend the support group here.Before I knew about this group 3 yrs

ago I started an online support group but very few people have

joined.I would love to meet others in our group.I have not meet

anyone his with a child that is dual dx that has the challenges most

of our children have with SIB,head banging,not potty trained,fecal

smearing,screaming,etc. My friends kids only are DS and seem pretty

normal to me maybe just a little slow. I knew as a young person I

could not handle having a child with DS and that was my worst fear.

Little did I know having autism was way worst.I like you have had to

learn to accept the things that I cannot change.I agree the ones on

this list that have chosen to adopt a kid with Ds/autism those are

the special people.The teachers, and aids that work with these kids

those are special people.I am not special but I try hard to help my

little guy be the best person he can be.I to have a daughter that is

extremely bright and is wonderful with her little brother.My daughter

loves her little brother and has been a big helps since she was 3yr

old when he was born. How old is your daughter? Cyndi B

>

> Before I had my son w/DS at age 32, my chances were about

1/700. No

> one in my huge family had a child with Down Syndrome. The

geneticist told me

> afterward that at age 33, my chances were about 1/100, but as I

got older they

> went way up. For example by the time I was 40 they would be

1/25.

> Fortunately we had already had our daughter, who is very bright

( & " normal " ), so we

> opted out of having any more kids.

>

> The geneticist said she didn't know exactly why our chances went

up, but

> based on statistics our chances are higher. I do know a family who

has 2 kids

> with DS. It seems like of the families that I know, many of them

are either

> pretty much done with child-bearing when they have a child with DS

or they

> decide that they are. Please don't be offended, this is my

OPINION, but

> whenever I see a pregnant mom of a child with Down Syndrome, I

think of how brave

> they are to do it again. For those of you who have adopted, I

think you are

> wonderful. I didn't choose this life, but you did and some of you

have

> multiple kids with various disabilities. My hat is off to you.

I'm not a very

> patient person, but my son has forced me to learn it.

>

> We are thinking about coming to Indianapolis & if so, I would love

to meet

> those of you who are there.

>

> - KCMO,

> mom to 15 DS, ASD PDD-NOS

>

>

>

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

shape.

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

NCID=aolcmp00300000002489

>

>

>

[Guest guest]

My daughter is 18 now & will be headed off to college next August.? She was 2

1/2 when was born.? She is pretty good with him, but doesn't really make

much effort to interact.?? She wants to travel the world and I'm going to

support her in that for the near future, but I feel that I need to talk to her

about the distant future when we cannot take care of anymore.? My?dh is 55

and I'm 48, so?we're not so young anymore.?? Still we should have a while before

we have to make any decisions.

I'd really love for to be able to live in some sort of community, maybe an

apartment building like someone else described with other adults like him.?

Right now I'm just trying to teach him to bath himself & brush his own teeth.?

It took forever to get him to learn to dry his hands.? He is also non-verbal, so

that presents it's challenges.? He is learning to use a communications device,

but it is currently broken.? We had to send it back to the manufacturer.

mom to 15 DS ASD PDD-NOS

________________________________________________________________________

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[Guest guest]

we had nathan when we were both 20years old. I think the odds were something

like 1/20,000 We were advised not to have anymore as our chances increased.

We werent going to have anymore but then got surprised with nicholas, who

allthough doesnt have DS has given more trouble, lol, but we love both our boys

dearly and since i had nicholas we opted not to have anymore. Sometimes I

think all the stress and worry i was in when pregnant with nicholas somehow

passed into him, causing him to have anxiety and OCD, but hubby just found out

recently he has the same thing, so dont feel as bad. shawna

In a message dated 1/13/2008 3:48:52 P.M. Central Standard Time,

teresatech77@... writes:

Before I had my son w/DS at age 32, my chances were about 1/700. No

one in my huge family had a child with Down Syndrome. The geneticist told me

afterward that at age 33, my chances were about 1/100, but as I got older

they

went way up. For example by the time I was 40 they would be 1/25.

Fortunately we had already had our daughter, who is very bright ( &

" normal " ), so we

opted out of having any more kids.

The geneticist said she didn't know exactly why our chances went up, but

based on statistics our chances are higher. I do know a family who has 2

kids

with DS. It seems like of the families that I know, many of them are either

pretty much done with child-bearing when they have a child with DS or they

decide that they are. Please don't be offended, this is my OPINION, but

whenever I see a pregnant mom of a child with Down Syndrome, I think of how

brave

they are to do it again. For those of you who have adopted, I think you are

wonderful. I didn't choose this life, but you did and some of you have

multiple kids with various disabilities. My hat is off to you. I'm not a

very

patient person, but my son has forced me to learn it.

We are thinking about coming to Indianapolis & if so, I would love to meet

those of you who are there.

- KCMO,

mom to 15 DS, ASD PDD-NOS

************************<WBR>**Start the year off right. Easy ways t

_http://body.http://body.<WBRhttp://body.<WBRhttp://body.<WBRhttp://bo_

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

[Non-text portions of this message have been removed]

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

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

[Guest guest]

Elie never could learn to use a computer for communication - he liked to

play with it too much. But we have successfully used PECS on cards an the

Writing with words 2000 which is a division of the MEyer BOardmaker

programs. I like the actual cards or paper in a notebook because I don't

have to worry about loss. Elie ow is able to express himself well enough

that he doesn;t walk around with his PECS collection, but we do still write

social sotries as needed to help him understand issues.

> My daughter is 18 now & will be headed off to college next August.? She

> was 2 1/2 when was born.? She is pretty good with him, but doesn't

> really make much effort to interact.?? She wants to travel the world and I'm

> going to support her in that for the near future, but I feel that I need to

> talk to her about the distant future when we cannot take care of

> anymore.? My?dh is 55 and I'm 48, so?we're not so young anymore.?? Still we

> should have a while before we have to make any decisions.

>

> I'd really love for to be able to live in some sort of community,

> maybe an apartment building like someone else described with other adults

> like him.? Right now I'm just trying to teach him to bath himself & brush

> his own teeth.? It took forever to get him to learn to dry his hands.? He is

> also non-verbal, so that presents it's challenges.? He is learning to use a

> communications device, but it is currently broken.? We had to send it back

> to the manufacturer.

>

>

> mom to 15 DS ASD PDD-NOS

> __________________________________________________________

> More new features than ever. Check out the new AOL Mail ! -

> http://webmail.aol.com

>

>

[Guest guest]

,

I could have written much of what you wrote today. I have a

Master's Degree in Social Work and my first job out of college was as

a preschool social worker at an agency that served children and

adults with developmental disabilities. I loved that job and the

clients I worked with. I later worked in the Semi Independent Living

Program and spent a lot of time in the Sheltered Workshop. I

remember saying to God, " I hope you are not preparing me for

something. " Although I loved individuals with developmental

disabilities (and my favorite show in high school was Life Goes On,

it was about a teenager with DS and his family) I did not want my

child to ever be born with DS. Today I I would love for my child to

only have DS as Autism to me seems so much more disabling. Do you

live in Indiana? I would love to meet you and your family and for

you to meet Colton. He is also 12.

Lori

[Guest guest]

, I do not even want to thank about my daughter turning 16 this

year and cannot imagine 18. Wow. My daughter wants to live at home

and go to college thank goodness.My husband is 42 and I am 43.This

experience has aged me physcially quite a bit. is non-verbal

and will not try to wash himself but will try to brush his teeth.His

routine is bath, pj's, and then he has to get the

toothpaste,toothbrush out of the drawer.I take the lid off and

together we put the toothpaste on the toothbrush.For years I have

sand the Barney song about brushing teeth and he tries.Afterwards he

puts the cap on the toothpaste,grabs his toothbrush and puts it all

back in the drawer.I have seen a few lifetime movies about putting

kids with DS in homes and I cry every time. There are times right now

that I do not know how much longer I can physically keep assisting

him and yet and cannot think about the day when I have to leave him

with strangers.One of his case workers told me I need to start

looking now and make sure he is on a list.The case managers said she

has a client that's child is 18 and the waitlist is 10-15 yrs

out. has been on the waiting list since he was born for one

facility but I need to check out more.We have to much to think about

and I will think about all that tommorrow. Cyndi B

>

> My daughter is 18 now & will be headed off to college next August.?

She was 2 1/2 when was born.? She is pretty good with him, but

doesn't really make much effort to interact.?? She wants to travel

the world and I'm going to support her in that for the near future,

but I feel that I need to talk to her about the distant future when

we cannot take care of anymore.? My?dh is 55 and I'm 48, so?

we're not so young anymore.?? Still we should have a while before we

have to make any decisions.

>

> I'd really love for to be able to live in some sort of

community, maybe an apartment building like someone else described

with other adults like him.? Right now I'm just trying to teach him

to bath himself & brush his own teeth.? It took forever to get him to

learn to dry his hands.? He is also non-verbal, so that presents it's

challenges.? He is learning to use a communications device, but it is

currently broken.? We had to send it back to the manufacturer.

>

>

> mom to 15 DS ASD PDD-NOS

>

______________________________________________________________________

__

> More new features than ever. Check out the new AOL Mail ! -

http://webmail.aol.com

>

>

>

[Guest guest]

Our next son to Elie who is 13 years older than ELie stayed home and went to

local college until he was 21. Then he transferred to GA (from VA) to

finish school. The first week wasn't too bad, but then we had a storm

closure of school due to a hurricane and I was home alone with Elie (husband

had the duty). Elie was 9 and at the worst of combativeness and

disaappearing, lots of lying on the floor kicking and screaming at night

because he would wake up every 10-15 minutes. No big brother to help!! I

thought that I would just put him out in the storm and disappear myself.

Got thru it, but the next day I was on the phone to every helping person I

had ever spoken to and every doctor (pre ASD dx) trying to figure out what I

could do. IT was awful.

So I say NOW to all of you who are getting help from older sibs - make a

plan for when they leave. Then think about, and make a plan B. Because

sure as you make a plan, things will change.

And I was in my middle 50's when this went on so I was already wearing out.

So plan again.

Also, if you have or are planning to change states, due your due diligence

and learn the new states regs, opportunities, WAIVERS, respite, camp, 501

© 3's that can help. We have been in three states with Elie. Each one

has something to offer better and something missing that another state did

better. There are tradeoffs. But planning for them helps with the culture

shock.

> , I do not even want to thank about my daughter turning 16 this

> year and cannot imagine 18. Wow. My daughter wants to live at home

> and go to college thank goodness.My husband is 42 and I am 43.This

> experience has aged me physcially quite a bit. is non-verbal

> and will not try to wash himself but will try to brush his teeth.His

> routine is bath, pj's, and then he has to get the

> toothpaste,toothbrush out of the drawer.I take the lid off and

> together we put the toothpaste on the toothbrush.For years I have

> sand the Barney song about brushing teeth and he tries.Afterwards he

> puts the cap on the toothpaste,grabs his toothbrush and puts it all

> back in the drawer.I have seen a few lifetime movies about putting

> kids with DS in homes and I cry every time. There are times right now

> that I do not know how much longer I can physically keep assisting

> him and yet and cannot think about the day when I have to leave him

> with strangers.One of his case workers told me I need to start

> looking now and make sure he is on a list.The case managers said she

> has a client that's child is 18 and the waitlist is 10-15 yrs

> out. has been on the waiting list since he was born for one

> facility but I need to check out more.We have to much to think about

> and I will think about all that tommorrow. Cyndi B

> >

> > My daughter is 18 now & will be headed off to college next August.?

> She was 2 1/2 when was born.? She is pretty good with him, but

> doesn't really make much effort to interact.?? She wants to travel

> the world and I'm going to support her in that for the near future,

> but I feel that I need to talk to her about the distant future when

> we cannot take care of anymore.? My?dh is 55 and I'm 48, so?

> we're not so young anymore.?? Still we should have a while before we

> have to make any decisions.

> >

> > I'd really love for to be able to live in some sort of

> community, maybe an apartment building like someone else described

> with other adults like him.? Right now I'm just trying to teach him

> to bath himself & brush his own teeth.? It took forever to get him to

> learn to dry his hands.? He is also non-verbal, so that presents it's

> challenges.? He is learning to use a communications device, but it is

> currently broken.? We had to send it back to the manufacturer.

> >

> >

> > mom to 15 DS ASD PDD-NOS

> >

> __________________________________________________________

> __

> > More new features than ever. Check out the new AOL Mail ! -

> http://webmail.aol.com

> >

> >

> >