RE: Topic of the week: Ds or MDS?

[Guest guest]

Ok.. I'm bad... I say Down Syndrome at first for the shock value... they do a

double take at and get all confused, which leads me into a great

explanation of " well, actually he has a rare form of Down's called Mosaic Down

Syndrome.... " I especially do with with people in the medical field, because it

gripes me sometimes that I have to explain his behavior to certain people. The

last time was at the dentist a few weeks ago... gets open and close

mixed up sometimes, and kept closing his mouth when they told him to open it~

and

they were getting irritated with him, so I have to interrupt them and explain

everything so they'll be more tolerant of the poor kid!! (Like being at the

dentist isnt bad enough!!!)

I feel very strongly though about educating people about MDS, so I'll always

clarify that and explain what it is.

Angel

Mom to

[Guest guest]

I don't usually have to say my son has DS or MDS because people can usually

tell. I only tell people about the MDS if I think they need to know. For

example, if it is someone I will never see again like a cashier or waitress,

I wouldn't say anything. But if it was someone who will have a place in my

son's life on a somewhat regular basis, I would definitely explain to them

what MDS is and that has it. This would be someone like a new special

needs worker, teacher or dentist for example. I have found that people are

genuinely interested in hearing about MDS because it is something new to

them and they are usually curious to know more.

Judi Girardi - mom to (MDS 10), (11) and (13)

>

>Reply-To: MosaicDS

>To: MosaicDS

>Subject: Topic of the week: Ds or MDS?

>Date: Mon, 10 May 2004 21:09:21 -0000

>

>Hi,

>Our topic of the week is:

>When you tell someone your child's dx do you say they have Down

>syndrome or mosaic Down syndrome? If you say they have Down

>syndrome, why do you not say mosaic Down syndrome?

>

>I think a large majority of our members do say that their children

>have Down syndrome instead of MDS because they say it is easier to

>not explain what mosaic is.

>

>Kristy

>

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[Guest guest]

Hmmmmm...

I guess it depends who I'm talking to. If the individual has seen Ariel I

know that if I simply tell them that she has Down Syndrome Im going to get all

sorts of questions anyway because she doesnt really look DS. If the individual

can help our " situation " and at the risk of sounding a bit off I only tell

them DS. I guess i feel the less information the better. In that case I

usually

add the Autism and then dont elaborate on that either. When dealing with

parents I always tell them MDS because I feel it is my job as a parent of a

special needs child to educate those around us that arent. LOL.....I also feel

that

after seeing my child it gives those around her to have a more positive

approach to children with special needs. People are usually familiar with DS so

to

see a child that is doing so well etc.

In a nut shell I would have to say I usually say Mosaic Down Syndrome. I have

a BA in Bio and I like to look intelligent...get all technical...leave people

wondering...when in reality what does genentics really have to do with it

anyway???But only we would know that.

Mom to Ariel and a set of twins UGH

[Guest guest]

In a message dated 5/11/2004 2:38:24 PM Eastern Standard Time,

uwittlebutt2@... writes:

Elsewhere , like in my search for insurance, I play it down big...

although it keeps getting tossed back into my face that DS is DS they

dont care how you spell it .... <grin> wait till they get my letters

and see just how I spell it lol.

This might help you in your quest....Yes DS is DS...but when dealing with SSI

benefits children with DS atomatically receive SSI (as long as income

parameters etc) except in the case of MDS...that is done on how their

functioning

level is. Maybe if the US government looks at MDS as different than DS maybe

the

INS Company could too.....

Just a thought

[Guest guest]

It depends on the reason I am speaking of Kaitee's dx. the way my

evil little mind works ... If I am seeking more services for Kaitee

in school, I don't correct them when they say DS. , and they dont

seem interested in hearing anything else ...

Elsewhere , like in my search for insurance, I play it down big...

although it keeps getting tossed back into my face that DS is DS they

dont care how you spell it .... <grin> wait till they get my letters

and see just how I spell it lol.

The latest discussion over Kaitee's dx, came from the audiologist...

she was new, and I guess she hadnt bothered to read Kaitee's

history... she was actually more involved in talking to Kaitee then

anything... which was a new twist usually they talk above her like

she is just a product in the room requiring their attention... but

the audiologist asked if she had been dx with anything other then

hearing loss.. I said yes, and there was a sigh of relief followed by

a quick grin, and a I was afraid I was going to have to suggest she

be tested for DS... and it has been a bad day already for me.. but

she was interested in trying to understand the difference from DS and

MDS ..

Unless it is a parent who is hedging around looking for information

for their own child, my usual response to people is " Kaitee is the

lords way of keeping my life interesting. He blessed me with two

angels who have been a breeze so far to raise, he tossed in a little

devil to keep me on my toes " ...

Family.. give up on them... dx her has they please lol..

debbi

[Guest guest]

Most people do not look at and know he has MDS and I don't usually

explain him to people unless they are working with him and then I do specify

that he has MDS.

Maureen, mother to Tyler, 10 and , 6 (MDS)

Topic of the week: Ds or MDS?

Hi,

Our topic of the week is:

When you tell someone your child's dx do you say they have Down

syndrome or mosaic Down syndrome? If you say they have Down

syndrome, why do you not say mosaic Down syndrome?

I think a large majority of our members do say that their children

have Down syndrome instead of MDS because they say it is easier to

not explain what mosaic is.

Kristy

Won't you please consider adding your personal story on the MDS website today?

http://www.mosaicdownsyndrome.com

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Become a member of IMDSA at http://www.imdsa.com

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[Guest guest]

..

> This might help you in your quest....Yes DS is DS...but when

dealing with SSI

> benefits children with DS atomatically receive SSI (as long as

income

> parameters etc) except in the case of MDS...that is done on how

their functioning

> level is. Maybe if the US government looks at MDS as different

than DS maybe the

> INS Company could too.....

>

>

,

I have brought all this to the attention of those I have spoken

too... DS may be DS to many, but I explained... MDS children do not

qualify for the same benefits as DS children, and as far as they are

concerned .. MDS children dont qualify for what a normal child

does... so where does my child fit?? I covered all these bases with

the insurance companies.. at this time, it is more of the need to

make a point then caring if I get insurance .. I just have a serious

problem with their attitudes ...

Debbi

[Guest guest]

Kristy-

As you know - we tell so few people about but much

like 's mom I like to throw off the medical

community. I always tell them about his diagnosis and

then take 5 minutes to educate them as they scrap their

chin off the floor. One time was in the emergency

room for xrays after a bad fall- and a doctor had the

nerve to tell me that I shouldnt tell anyone about

's " condition " - it threw him off. WHen he was

given s chart he said " he had to prepare himself

and when he walked in the room it was not what he

expected " I apologized for throwing him off guard -

and told him wasn't at all what we expected either

- mainly because of the lack of knowledge medical

professionals like himself have when it comes to MDS.

Can you imagine a medical professional telling me not

to include MDS in 's medical history!!!

We always say MDS and then explain - I dont think we

have ever told anyone that had DS-

Ellen Kugel

[Guest guest]

Ellen,

I can not stress enough, how important it is for ALL parents to educate the

medical community. If these doctors knew more about MDS, there would be alot

more dx. And, with the dx, the parents would be able to pursue the services

their child needs at an early age.

So....Keep on educating them!

Kristy

Kugel wrote:

Kristy-

As you know - we tell so few people about but much

like 's mom I like to throw off the medical

community. I always tell them about his diagnosis and

then take 5 minutes to educate them as they scrap their

chin off the floor. One time was in the emergency

room for xrays after a bad fall- and a doctor had the

nerve to tell me that I shouldnt tell anyone about

's " condition " - it threw him off. WHen he was

given s chart he said " he had to prepare himself

and when he walked in the room it was not what he

expected " I apologized for throwing him off guard -

and told him wasn't at all what we expected either

- mainly because of the lack of knowledge medical

professionals like himself have when it comes to MDS.

Can you imagine a medical professional telling me not

to include MDS in 's medical history!!!

We always say MDS and then explain - I dont think we

have ever told anyone that had DS-

Ellen Kugel