Re: Telling people

[Guest guest]

In a message dated 12/7/01 5:42:07 AM Pacific Standard Time, duffey48@...

writes:

<< Hey guys,

There's a topic on Downsyn right now that I think is kind of interesting.

The subject line is " Telling people " and it started when someone who has a

fairly new baby was asking about whether or not you tell people upfront that

your child has DS (she had a bad experience in the hair salon). Anyway, I

thought it was interesting. I have always told upfront and of course, as

Maddie gets older, it's more than obvious so seems unnecessary. However, I

DO feel compelled to say she has DS AND autism because people KNOW she's

older and I can see the wonder in their eyes. Do you guys tell people

upfront about BOTH dx's??

Donna, Curious >>

Donna,

Seems like I don't mention the ds very much. I don't know if it's because I

assume it's obvious, or that the asd is always at the for-front. I've taken

Seth to the ER and forgot to mention ds a couple of times when they ask for

all his dx's. LOL Doctor always comes in with a couple other people and

proceeds to ask me if I'm aware that Seth has ds. LOL They always seem

sooooo nervous. LOL The ds issues just don't seem that big of a deal, ya

know? I usually don't say anything unless Seth gets strange looks, then I

usually say he has asd. Maybe I shouldn't assume the ds is obvious. With

Seth still being young, maybe the characteristics aren't that obvious yet.

Gail :-)

[Guest guest]

When I meet someone new they usually ask where Rochelle goes to school. Then

I say, she is in a Sped class. Sometimes I say she has Down Syndrome and

other times that is enough information for them. I think kids are naturally

curious. So, I will tell them more if they ask, which they do. As for the

dual dx, it's still pretty new to me and I will tell people if it makes sense

to better understand her behavior.

As she gets older more people notice she has Down Syndrome. It is her odd

behavior that attracts their attention. It's sort of like when people

mispronounce Rochelle. I don't correct them unless I think I will see them

again. Most times I can't remember their names either. The people in stores

or at the pool that initiate conversation usually know someone with DS and

they want to share. Thank goodness I have not had any bad experiences with

strangers.

I love that you say " Isn't she beautiful " when people stare. That's a good

one. I lurk on the other list serves and occassionly will put in my two

cents. But you guys are home to me.

Diane

[Guest guest]

In a message dated 12/7/01 10:28:29 AM Eastern Standard Time,

jmedlen@... writes:

> You know, I always wonder about this when I write " bios " to go after my

> name. For instance, I just co-authored an article for a dietitian's

> publication on Down syndrome and the role the RD can play. When adding ot

> my description, i wondered if it would detract from teh article to add teh

> autism....

>

> what do ya'll think?

>

Well Joan, you KNOW what I think!! Yes, put it in there. But then be

prepared to be inundated with professionals from the autism world asking you

to write articles on the role of the RD can play in eating and autism......<<<

grin>>>

<<PS--NDSS national conference is supposed to be about the diversity of

community. They're responding to a study that showed the disparity between

life expectancy of white kids with DS and african american kids with DS

that came out last year (it was horrible how different it was!). But I've

asked them if they're going to include the topic of being open to the

diversity in abilities...(they know I'm talking about our kids). I'm

working on it........>>

Wow Joan!!! So shocking!!! And let us know what the NDSS says to you

about this. It's hard for me sometimes, because I am the new parent contact

person for our local support group (and a parent to parent contact for

DS/austism and breastfeeding/DS contact for NDSS), despite the fact that I am

no longer active in the group. Often I get new parents wanting to meet

Maddie because they've had no exposure to DS. First off, I tell them she's

not to be on display and I don't go for that. Secondly, she is NOT what a

child with DS looks/acts like, so that person would be getting the wrong

impression. I try to tell them that ALL kids with DS are unique unto

themselves and can't be compared, but they seem to have this need to actually

see a child with DS that is older than their baby.

Donna

[Guest guest]

In a message dated 12/7/01 10:28:03 AM Eastern Standard Time,

jmedlen@... writes:

> When adding ot

> my description, i wondered if it would detract from teh article to add teh

> autism....

>

>

I would only add the information if it is in a Down Syndrome or Autism

publication. Or if it specifically refers to children with the diagnosis.

Because then they know you live what you preach. Soooo you probably know what

you are talking about. It might detract if it has no revelancy. Depends on

what your writing. Only my thoughts, I'm sure you'll get many.

Diane

[Guest guest]

HI Donna and Everyone,

I decided not to be a new parent contact for similar reasons. Brook is

not typical and I really didn't want to scare anybody with a new baby. I know

when Brook was born some friends of one of my sisters immediately sent me

tons of info on how I was going to have to fight for services and sue the

school district etc. They sent a booklist for me to read, all to do with

fighting the system. Then my sister called and wanted to know if I had read

any of the books and was it helpful. NO, it was not. She understood and I

hope she told her friends. It was really awful. I think you have to be very

careful to support people with what they need and are looking for when they

have a new baby with DS.

As for telling people, I have found that some people if I am up front with

them, become really intrusive and end up asking me all kinds of really

personal questions. This has happened more since my daughter Genevieve, was

born. At her preschool other Moms will ask me if I have other kids, what are

their ages, where do they go to school, etc. I am very upfront about Brook

having Ds and going to school in another town, but then they start in with

all of their questions. Did you know he had it before he was born? Did you

have an amnio? How old were you when he was born? How did you feel when he

was born? Were you shocked? etc. Would you have kept him if you knew? It's

unbelievable!

So I think I am going to be more selective about what and who I tell.

Even when I only tell them about the DS I have found that most people don't

really have a clue what it means to have Ds, let alone, autism.

Marisa

Mom to Miles 14, Brook 11 and Genevieve 4

[Guest guest]

>Do you guys tell people

> upfront about BOTH dx's??

Most of the time, I do. By now, everyone who needs to know, knows -- so it

doesn't come up often. But when new people come along, and I see " that

look, " when I see that they notice Ian's not like other kids with Down

syndrome (as far as they know about kids with Down syndrome), I do explain

it.

CK,

Mom to Ian (2/89),

(9/90),

and Rose (6/94)

[Guest guest]

At 10:17 AM 12/7/01 -0500, you wrote:

>>Do you guys tell people

>> upfront about BOTH dx's??

You know, I always wonder about this when I write " bios " to go after my

name. For instance, I just co-authored an article for a dietitian's

publication on Down syndrome and the role the RD can play. When adding ot

my description, i wondered if it would detract from teh article to add teh

autism....

what do ya'll think?

PS--NDSS national conference is supposed to be about the diversity of

community. They're responding to a study that showed the disparity between

life expectancy of white kids with DS and african american kids with DS

that came out last year (it was horrible how different it was!). But I've

asked them if they're going to include the topic of being open to the

diversity in abilities...(they know I'm talking about our kids). I'm

working on it........

[Guest guest]

Telling...it depends. With JJ things are so obvious. He usually wants to

be on the floor checking it out. With the others I don't say anything until

asked or they give " that look " But our family is so different from most of

yours. Usually the question is " Do you do foster care? "

Gail, love your comment about the docters office/ER. When we first were

getting Tim(3lb premmie) our doctor was overseas. We were on the way out of

town for Thanksgiving and we passed each other in the corridor of the

airport. He was returning and we were going. Told him about Tim and

problems, his question to us was " Does he have DS? " I forgot to mention

that! LOL

& Garry, parents of (11 ds), (10 ds), JJ (8

ds/autism/celiac), (7 ds/ADHD/Celiac), and Esther (4 ds). All adopted.

----------

>From: smilinggail@...

>

>Subject: Re: Telling People

>Date: Fri, Dec 7, 2001, 6:29 AM

>

>In a message dated 12/7/01 5:42:07 AM Pacific Standard Time, duffey48@...

>writes:

>

><< Hey guys,

> There's a topic on Downsyn right now that I think is kind of interesting.

>

> The subject line is " Telling people " and it started when someone who has a

> fairly new baby was asking about whether or not you tell people upfront that

> your child has DS (she had a bad experience in the hair salon). Anyway, I

> thought it was interesting. I have always told upfront and of course, as

> Maddie gets older, it's more than obvious so seems unnecessary. However, I

> DO feel compelled to say she has DS AND autism because people KNOW she's

> older and I can see the wonder in their eyes. Do you guys tell people

> upfront about BOTH dx's??

> Donna, Curious >>

>

>Donna,

>Seems like I don't mention the ds very much. I don't know if it's because I

>assume it's obvious, or that the asd is always at the for-front. I've taken

>Seth to the ER and forgot to mention ds a couple of times when they ask for

>all his dx's. LOL Doctor always comes in with a couple other people and

>proceeds to ask me if I'm aware that Seth has ds. LOL They always seem

>sooooo nervous. LOL The ds issues just don't seem that big of a deal, ya

>know? I usually don't say anything unless Seth gets strange looks, then I

>usually say he has asd. Maybe I shouldn't assume the ds is obvious. With

>Seth still being young, maybe the characteristics aren't that obvious yet.

>Gail :-)

>

>

>--------------------------------------------------

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[Guest guest]

In a message dated 12/7/01 7:16:59 AM Pacific Standard Time,

writes:

> Do you guys tell people

> upfront about BOTH dx's??

>

Oh yes, Donna, especially since is usually all over the place while I'm

explaining his " conditions " ...haha...they usually remark that " DS kids are so

laid back and complacent " , until they get a look at what 's up to!!! I

get pity looks MORE for the autism dx than I do the DS!! Go figure.......

[Guest guest]

Well I only tell my friends that are interested. If

they know about children with autism, then I tell them

that I'm involved with that. But if someone doesn't

know about autism, then I'll just say what it is, and

leave it like that. It's sometimes hard describing

what it is.

--- Scherbert <Scherb@...> wrote:

> Telling...it depends. With JJ things are so

> obvious. He usually wants to

> be on the floor checking it out. With the others I

> don't say anything until

> asked or they give " that look " But our family is so

> different from most of

> yours. Usually the question is " Do you do foster

> care? "

>

>

=====

__________________________________________________

[Guest guest]

whe nathan was a babe i couldnt talk about him at all,

i would start crying every time, even when i fed him.

Nowadays i kinda play it buy moment/ear, and i mention

he does have both ds and autism, to extinguish his

differentiating behaviors from those they know with

ds. shawna.

=====

shawna

__________________________________________________

[Guest guest]

I don't know what I think, sorry wish I was more help

--- duffey48@... wrote:

> In a message dated 12/7/01 10:28:29 AM Eastern

> Standard Time,

> jmedlen@... writes:

>

>

> > You know, I always wonder about this when I write

> " bios " to go after my

> > name. For instance, I just co-authored an article

> for a dietitian's

> > publication on Down syndrome and the role the RD

> can play. When adding ot

> > my description, i wondered if it would detract

> from teh article to add teh

> > autism....

> >

> > what do ya'll think?

> >

>

=====

__________________________________________________

[Guest guest]

Hi Donna,

In answer to your question, I don't always tell anyone about Zeb because he

wears the label. Occasionally some old lady will stare at Zeb in the grocery

store and it tics me off. I would love to ask her what the ...is she staring

at but I politley say can I answer any questions for you. Some people run the

other way because they got caught staring and are embarrassed but others are

very interested and do ask questions. I then have no problem discussing

anything. We do have an advantage with DS because our kids do wear the label

unlike other children that look perfectly typical with strange behaviors.

These kids really get the stares and many parents are continually explaining.

Charlyne

Mom to Zeb almost 9 DS/OCD ?

[Guest guest]

Hi Joan,

If your article is for children with DS that would include all children but

if you add autism I think most people would think that it is only for DS

children with autism.

Charlyne

[Guest guest]

--- charlyne1121@... wrote: > Hi Donna,

> I really love this approach, can't wait to use it!!

-mum to Rebekah 3(u.k.)

>

> [Non-text portions of this message have been

> removed]

>

>

> --------------------------------------------------

> Checkout our homepage for information,

> bookmarks, and photos of our kids. Share favorite

> bookmarks, ideas, and other information by including

> them. Don't forget, messages are a permanent record

> of the archives for our list.

>

> --------------------------------------------

>

>

[Guest guest]

--- duffey48@... wrote: > In a message dated

12/7/01 10:28:29 AM Eastern

> Standard Time,

> jmedlen@... writes:

>

>

> >

> Donna

I can relate to people with new babies wanting to meet

your daughter. When I was 5 months pregnant I found

out that Rebekah had DS. The only people I had seen

with DS prior to finding this out had been about 30

years old dressed like pensioners and walking around

holding elderley parents hands.I needed to see a child

with D.S. to put my mind at rest that all people with

d.s. weren't born like that!! stupid I know but I

think at time's like that shock makes you react in

different ways.

4 years down the line and with the benefit of hind

sight I agree with you that Maddie should not be on

display

-mum to Rebekah 3 (u.k.)

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

[Guest guest]

To generalize a bit: lots of people seem to have trouble with funeral visitation, hospital visitation, or even nursing-home visitation. In your words Pat, "just don't have any idea what to say." No trouble talking about the weather or current sports events, or you-name-it, but speechless about pain or suffering. Maybe this could lead into a 'family values' discussion....(another time or place.....). waynepkenn16 <pkennedy16@...> wrote: Hello All'I've found, dealing with both CLL

and breast cancer (doing well withboth right now) that reactions are as varied as people are. A coupleof my closest friends (one a doctor) and most of my family never talkabout it, which is hard, but I've come to accept that it's theirproblem and not about me. I think it makes them feel vulnerablesomehow. I confronted one friend and he said he just didn't have anyidea what to say, felt helpless and didn't want to say something tomake me feel worse. Others, friends and strangers, give me the you'reso strong and brave routine. I read a very good article related tothat stating that we are not all Superman or Lance Armstrong and tonot let others put that on us.Most of the people I can really talk toabout what's going on, my frustrations, at times fears, and stepsforward or back are people who have dealt with cancer directly orhelped someone close to them go through it.I don't tend to bring upthe subject, except, as

someone else mentioned, when I'm aroundsomeone who's sick and I need a gracious way to move away, but don'tback away from it when it comes up. I do use my experience to try toencourage others to get tested for all the routine things that canlead to early cancer diagnosis. In addition, I find myself spending alot of time telling people how to deal with/fight "the system". I'msaddened by the fact that so many people go along blindly, not askingquestions, when they sense something is wrong but get no response frommedical professionals. Onward and upward! Pat >> Hello Chonette,> > I agree that many people do not know where to look when the term"cancer" or "lymphoma" comes up. It's almost as though they expectyou to curl up your toes right there and then! It's most unfortunatepeople

are so afraid of talking about death and dying; after all it'snot an experience anyone is going to miss out on.> I think we are in a very good position to help and to educate - bytalking openly and gently with those who appear to be open to theconversation.> > W.>

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