Question

[Guest guest]

I can say that my mom was very much for an abortion when the OBGYN told us

would have MDS. She mentioned it several times during my pregnancy along

with telling me it wouldn't be fair to my older son to keep . Thank

goodness she and her husband love and accept now that he is here. I

sometimes can't help but wonder how they would feel if had more issues

but always try to remind myself of the " here and now " instead of the " what if " .

God Bless each and everyone of us and our children. They teach me something

everyday. LOVE and LOVED.

Trista

---- Grovers wrote:

> ROTFLOL! I love when life takes care of the relatives for you! LOL Thanks

for sharing that. And yep, I think you know how that felt. LOL Diane

> -------------- Original message from " " :

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

>

> Diane, we had something similar happen with RELATIVES. They had

> absenced themselves from me since my son's birth and their knowledge

> of his then diagnosis of DS (now MDS and they have no clue and I do

> not care if they ever know...lol). We happen to run into them in a

> SAM'S parking lot. They did not know what else to say and all that

> popped out was (after their thorough " lookover " of him), " Well, there

> is nothing wrong with him at all is there? " I was so " stunned " , as

> they walked off hurriedly. I think they were embarassed at their

> previous actions not to help me when I most needed them after his

> birth and all the rotten things that happened as a result of his

> diagnosis. Well, the last laugh is on them. Especially now, knowing

> that this is a dominant trait. LOL....I still laugh today. (It keeps

> me sane.) :0))

>

>

> > > > > My daughter is starting to really communicate these days. Not

> > in

> > > full

> > > > > sentences, but if she want a banana, she will come up to me,

> > tap

> > > me,

> > > > > and then say nana. If she needs to go potty she will say pee

> > pee.

> > > > > Some of what she is saying is all so new this summer. It

> seems

> > > like

> > > > > new words are popping out each day. And the part that is

> > > surprising

> > > > > me is how intentional her communication is. She is 3 and 1/2.

> > > Like I

> > > > > said, no sentences but lots of letting us know what she wants

> > > through

> > > > > words. My question is, at what age did you all with older

> ones

> > > let go

> > > > > completely of the sign, and let your child work more on the

> > > words? Or

> > > > > did you? I find us moving further and further from the

> signing,

> > > and

> > > > > more and more closer to the words. Would love to hear your

> > > thoughts.

> > > > > Diane

> > > > >

> > > > > Kristy Colvin

> > > > > IMDSA President

> > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > > > > International Mosaic Down Syndrome Association

> > > > > PH:

> > > > > Toll Free: 1-888-MDS-LINK

> > > > > http://www.imdsa.org

> > > > > http://www.mosaicmoments.today.com

> > > > >

> > > > >

[Guest guest]

-Trista,

I feel for you very much so, as I had and still have some of these

issues with various family members; one of which is my father, but

that is a whole other thread and very depressing.

I learned very quickly what people really though of my children. And

when CH had the diagnosis of DS, he was treated much differently than

now with a diagnosis of MDS 50% (2006)[i put the percentage followed

by the date, as well, because that number is subject to change and

probably different by now,,,,,lol] Anyway, those who said awfl things

about him still do not know the new diagnosis, never visit, and have

their mind made up on how he is supposed to be. They will never have

the opportunity to see my son in a different light and that is so

sad. Those who have accepted him and the rest of us for how we

are...well, they are still around us. <br>

I am glad that your mother seems to accept your son now that he is

here; it would stil be on my mind also, though, and I would wonder

how she really feels inside. It would bug me to the point of asking.

I never knew or had any suspicion whatsoever of DS or MDS with my son

or any of us (for that matter) before his birth. Before CH was born,

he was my prize child....our first boy. I had a vey happy pregnancy.

I just wish that could have continued right after birth. But the past

is gone and now it is much better than before.

-- In MosaicDS , wrote:

>

> I can say that my mom was very much for an abortion when the OBGYN

told us would have MDS. She mentioned it several times during

my pregnancy along with telling me it wouldn't be fair to my older

son to keep . Thank goodness she and her husband love and

accept now that he is here. I sometimes can't help but wonder

how they would feel if had more issues but always try to

remind myself of the " here and now " instead of the " what if " . God

Bless each and everyone of us and our children. They teach me

something everyday. LOVE and LOVED.

> Trista

>

>

> ---- Grovers wrote:

> > ROTFLOL! I love when life takes care of the relatives for you!

LOL Thanks for sharing that. And yep, I think you know how that

felt. LOL Diane

> > -------------- Original message from " "

: --------------

> >

> > Diane, we had something similar happen with RELATIVES. They had

> > absenced themselves from me since my son's birth and their

knowledge

> > of his then diagnosis of DS (now MDS and they have no clue and I

do

> > not care if they ever know...lol). We happen to run into them in

a

> > SAM'S parking lot. They did not know what else to say and all

that

> > popped out was (after their thorough " lookover " of him), " Well,

there

> > is nothing wrong with him at all is there? " I was so " stunned " ,

as

> > they walked off hurriedly. I think they were embarassed at their

> > previous actions not to help me when I most needed them after his

> > birth and all the rotten things that happened as a result of his

> > diagnosis. Well, the last laugh is on them. Especially now,

knowing

> > that this is a dominant trait. LOL....I still laugh today. (It

keeps

> > me sane.) :0))

> >

> >

> > > > > > My daughter is starting to really communicate these days.

Not

> > > in

> > > > full

> > > > > > sentences, but if she want a banana, she will come up to

me,

> > > tap

> > > > me,

> > > > > > and then say nana. If she needs to go potty she will say

pee

> > > pee.

> > > > > > Some of what she is saying is all so new this summer. It

> > seems

> > > > like

> > > > > > new words are popping out each day. And the part that is

> > > > surprising

> > > > > > me is how intentional her communication is. She is 3 and

1/2.

> > > > Like I

> > > > > > said, no sentences but lots of letting us know what she

wants

> > > > through

> > > > > > words. My question is, at what age did you all with older

> > ones

> > > > let go

> > > > > > completely of the sign, and let your child work more on

the

> > > > words? Or

> > > > > > did you? I find us moving further and further from the

> > signing,

> > > > and

> > > > > > more and more closer to the words. Would love to hear

your

> > > > thoughts.

> > > > > > Diane

> > > > > >

> > > > > > Kristy Colvin

> > > > > > IMDSA President

> > > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > > > > > International Mosaic Down Syndrome Association

> > > > > > PH:

> > > > > > Toll Free: 1-888-MDS-LINK

> > > > > > http://www.imdsa.org

> > > > > > http://www.mosaicmoments.today.com

> > > > > >

> > > > > >

[Guest guest]

Personally, I LOVE our almond-shaped eyes! I always heard that

children with DS were painted more in portraits in the olden

centuries because of their ability to stay still (LOL) and their

incredible BEAUTY!!!! SO, that is a weird and narcistic comment from

whoever made it. Some people are so much into themselves that they

fail to even see or hear what they are saying and doing.

<br>

And if almond-shaped eyes are so bad, then why do " MOVIE STARS " have

plastic surgery to obtain them?? ROTFL.

<br>

I never noticed I had them until after Charlie Hart, and as a matter

of fact, I really did not have them in my younger pictures. I forget

what it is called, but I " acquired " mine for the most part in the

aging process. I just chalk it up to genetics.

<br>

Almond eyes are well sought after and very beautiful.

SUsan

> > > > My daughter is starting to really communicate these days. Not

> in

> > full

> > > > sentences, but if she want a banana, she will come up to me,

> tap

> > me,

> > > > and then say nana. If she needs to go potty she will say pee

> pee.

> > > > Some of what she is saying is all so new this summer. It

seems

> > like

> > > > new words are popping out each day. And the part that is

> > surprising

> > > > me is how intentional her communication is. She is 3 and 1/2.

> > Like I

> > > > said, no sentences but lots of letting us know what she wants

> > through

> > > > words. My question is, at what age did you all with older

ones

> > let go

> > > > completely of the sign, and let your child work more on the

> > words? Or

> > > > did you? I find us moving further and further from the

signing,

> > and

> > > > more and more closer to the words. Would love to hear your

> > thoughts.

> > > > Diane

> > > >

> > > > Kristy Colvin

> > > > IMDSA President

> > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > > > International Mosaic Down Syndrome Association

> > > > PH:

> > > > Toll Free: 1-888-MDS-LINK

> > > > http://www.imdsa.org <http://www.imdsa.org/>

> > > > http://www.mosaicmoments.today.com

<http://www.mosaicmoments.today.com/>

> > > >

> > > >

[Guest guest]

,

Me thinks you protest too much. People might actually know you by your eye

color rather than that you are an author. The point was, it's all a part of who

you are.

If someone was looking for me they would say I have gorgeous brown eyes, long

silky blond hair, a voluptuous figure etc. (Just kidding.) So it seems to

me that's a part of who I am. I guess I can change that with green contact

lenses. But no one would know me on sight if they were told to look for a dental

hygienist.

Judie, mom to Christi, 29 and others

**************

Psssst...Have you heard the news? There's a new fashion blog,

plus the latest fall trends and hair styles at StyleList.com.

(http://www.stylelist.com/trends?ncid=aolsty00050000000014)

[Guest guest]

I really hate that gmail does not have an automatic spell checker - I meant

Kindergarten and intelligible

Darlene

On Sat, Sep 13, 2008 at 2:10 PM, Darlene Benoit wrote:

> ,

>

> I second what Judie said, you have to be as open and honest about " who she

> is " as possible.

>

> At first I told people I worked with because I needed support, I was still

> reeling " How could MY PRINCESS " have MDS?

> And now I am still shocked when people (only 3 people have) ask " Does your

> daughter have DS? " Mostly people who have children with DS - they can see

> it in her eyes, which is her only external sign of MDS.

> However, has a speech delay. She is 9 and she did not talk until

> she was in 2nd grade - without speech teachers are at a loss to check that a

> Kindergartern or 1st grade student knows the answers. So she lost 2 years

> of school. Her speech is coming fast - it is 70% intellegable but you have

> to slow down and listen to what she is saying to understand.

>

> So I was always afraid that she would be judged by how she looks, now she

> is judged by how she sounds. But as for the kids in school - they just

> know her as and she has a TON of friends.

>

> So you really can't prepare for everything. Believe me, I tried. You will

> make mistakes, and you will learn.

>

> Good Luck with Andi,

> Darlene - Mom to (11) and (9)

>

>

>

>

>> Dear ,

>>

>> If you really want people to look at Andi (great name!) " for who she is "

>> then be open about who she is. She is herself, and MDS is as much a part

>> of her

>> as the color of her eyes.

>>

>> As for " labels, " the mosaicism's effect on Andi won't be known until her

>> development progresses, but no matter how, it doesn't change the fact that

>> its

>> there.

>>

>> You can explain to others that you waited to talk about it because you

>> wanted

>> to get a handle on it yourselves first, so you could better answer

>> questions you knew you'd be facing.

>>

>> Judie, mom to Christi, 29 and others

>>

>> **************

>> Psssst...Have you heard the news? There's a new fashion blog,

>> plus the latest fall trends and hair styles at StyleList.com.

>>

>> (http://www.stylelist.com/trends?ncid=aolsty00050000000014)

>>

>>

[Guest guest]

In a way I agree, but I have to disagree with what I " hear " (read)

being said here. The color of her eyes, her outsid apearance, and MDS

do " NOT " define " who she is " . It certainly does not define me or my

children.

For instance....I am an author, a nurse, a private investigator, a

childbirth educator, an independent researcher into the field of Down

Syndrome, a wonderful Mom,and a homeschool teacher. This is how

people know me; they do not know me by my eye color or my genetic

makeup.

I think the wrong message is coming across here, because certainly

this is not what you have meant to say. (Is it?)

SUSan

>

> Dear ,

>

> If you really want people to look at Andi (great name!) " for who

she is "

> then be open about who she is. She is herself, and MDS is as much a

part of her

> as the color of her eyes.

>

> As for " labels, " the mosaicism's effect on Andi won't be known

until her

> development progresses, but no matter how, it doesn't change the

fact that its

> there.

>

> You can explain to others that you waited to talk about it because

you wanted

> to get a handle on it yourselves first, so you could better

answer

> questions you knew you'd be facing.

>

>

> Judie, mom to Christi, 29 and others

>

>

>

> **************

> Psssst...Have you heard the news? There's a new fashion blog,

> plus the latest fall trends and hair styles at StyleList.com.

>

> (http://www.stylelist.com/trends?ncid=aolsty00050000000014)

>

>

>

[Guest guest]

-

No, no one defines you by the color of your eyes or what you look like (at

least we can't see you on email ;-) But in everyday life - 90% of the people

that you pass will make a judgement about you by your appearance, your

demeanor, your friendliness, something you said that was overheard or

something else without getting to know you. And you don't know what that

judgement is - unless they are afraid of you and move to the other side of

the elevator and huddle in fear.

Now, once people get to know you, that opinion may change - or it may not

depending on you and their frame of mind.

Darlene

> In a way I agree, but I have to disagree with what I " hear " (read)

> being said here. The color of her eyes, her outsid apearance, and MDS

> do " NOT " define " who she is " . It certainly does not define me or my

> children.

> For instance....I am an author, a nurse, a private investigator, a

> childbirth educator, an independent researcher into the field of Down

> Syndrome, a wonderful Mom,and a homeschool teacher. This is how

> people know me; they do not know me by my eye color or my genetic

> makeup.

> I think the wrong message is coming across here, because certainly

> this is not what you have meant to say. (Is it?)

> SUSan

>

> >

> > Dear ,

> >

> > If you really want people to look at Andi (great name!) " for who

> she is "

> > then be open about who she is. She is herself, and MDS is as much a

> part of her

> > as the color of her eyes.

> >

> > As for " labels, " the mosaicism's effect on Andi won't be known

> until her

> > development progresses, but no matter how, it doesn't change the

> fact that its

> > there.

> >

> > You can explain to others that you waited to talk about it because

> you wanted

> > to get a handle on it yourselves first, so you could better

> answer

> > questions you knew you'd be facing.

> >

> >

> > Judie, mom to Christi, 29 and others

> >

> >

> >

> > **************

> > Psssst...Have you heard the news? There's a new fashion blog,

> > plus the latest fall trends and hair styles at StyleList.com.

> >

> > (http://www.stylelist.com/trends?ncid=aolsty00050000000014)

> >

> >

> >

[Guest guest]

Maybe I do protest too much; maybe I have had to? (I know I have had

to.)

The first thing I tell people is about our qualities. I do not bring

up MDS unless someone else does. There are many misconceptions

(generalized ones) associated the term " Down Syndrome " in any form. I

just do not see a need in it. If I go to apply for a job, I put " who

I am " , not what my phenotype is. Sometimes I mightlist the " good

genotype " qualities (i.e. attention to detail, etc...), but why does

it matter about the rest? (Unless I am around those with same genetic

conditions and then I have a " need " to acquire more information or

give it, either one. So, I would bring up things like, inherited MDS,

MDS 50%, and so forth.) I am a people first person.

I would not " lie " to someone; that is not what my intent was to say.

I would however reserve my comments to things that paint positive

thoughts in others heads about my children. (based on truths, of

course) With the wealth of " misinformstion " out there on DS and MDS,

I am afraid that there is too much negativity surrounding these

genetic differences. And that " is " a shame. If someone wants to be

educated, which many people that I meet do, then by all means, I

educate them.

Like all of my thoughts/comments, you can take it with a grain of

salt. I never meanto offend anyone at all. I believe everyone should

act in a way that makes them feel good with themselves and not in a

way that someone else thinks they should be. It was only an opinion.

I have had to be very forthright and moreso since my first son was

born because I have been thru most everything including some ignorant

lawmakers and government officials who tried to adopt out my son. I

act the way I do purposefully. I am very passionate about " who " I am.

I apologize if anyone takes offens to my comments. It is just " who I

am " .

>

> ,

>

> Me thinks you protest too much. People might actually know you by

your eye

> color rather than that you are an author. The point was, it's all a

part of who

> you are.

>

> If someone was looking for me they would say I have gorgeous brown

eyes, long

> silky blond hair, a voluptuous figure etc. (Just kidding.) So it

seems to

> me that's a part of who I am. I guess I can change that with green

contact

> lenses. But no one would know me on sight if they were told to look

for a dental

> hygienist.

>

> Judie, mom to Christi, 29 and others

>

>

>

> **************

> Psssst...Have you heard the news? There's a new fashion blog,

> plus the latest fall trends and hair styles at StyleList.com.

>

> (http://www.stylelist.com/trends?ncid=aolsty00050000000014)

>

>

>

[Guest guest]

Darlene, That is correct. Maybe, I misunderstood what someone was

saying in the post? Because what I read was that someone was telling

someone else to be forthright first about the MDS before anything

else...Is that not correct? Maybe I read that incorrectly or

interpretted it the wrong way?

---

> > >

> > > Dear ,

> > >

> > > If you really want people to look at Andi (great name!) " for who

> > she is "

> > > then be open about who she is. She is herself, and MDS is as

much a

> > part of her

> > > as the color of her eyes.

> > >

> > > As for " labels, " the mosaicism's effect on Andi won't be known

> > until her

> > > development progresses, but no matter how, it doesn't change the

> > fact that its

> > > there.

> > >

> > > You can explain to others that you waited to talk about it

because

> > you wanted

> > > to get a handle on it yourselves first, so you could better

> > answer

> > > questions you knew you'd be facing.

> > >

> > >

> > > Judie, mom to Christi, 29 and others

> > >

> > >

> > >

> > > **************

> > > Psssst...Have you heard the news? There's a new fashion blog,

> > > plus the latest fall trends and hair styles at StyleList.com.

> > >

> > > (http://www.stylelist.com/trends?ncid=aolsty00050000000014)

> > >

> > >

> > >

[Guest guest]

I remember Judie for 2 reasons....A) I have a picture of Christy from last

year's conference  & She's another RAIDER fan...LOL

I try mostly to remember Moms by who their kids are...like in Trey's class or

Austin's.  I will always remember the child, but if I have not met their parents

before I do a little " word " association so that I can remember people....

Sometimes it's something they have such as a tattoo or piercing....at least if I

do that, I can pick 'em out of a line up LOL

 

Blessings Abound,

(Becky) Rowe

Mom to Trey (8 ADHD) & Austin (5 MDS)

________________________________

Family Assistance Coordinator

 www.imdsa.org or becky@...

Help Team Austin @:

http://teambrats08.chipin.com/team-austin

 

Re: Question

,

Me thinks you protest too much. People might actually know you by your eye

color rather than that you are an author. The point was, it's all a part of who

you are.

If someone was looking for me they would say I have gorgeous brown eyes, long

silky blond hair, a voluptuous figure etc. (Just kidding.) So it seems to

me that's a part of who I am. I guess I can change that with green contact

lenses. But no one would know me on sight if they were told to look for a dental

hygienist.

Judie, mom to Christi, 29 and others

************ **

Psssst...Have you heard the news? There's a new fashion blog,

plus the latest fall trends and hair styles at StyleList.com.

(http://www.stylelis t.com/trends? ncid=aolsty00050 000000014)

[Guest guest]

Thank you so much for sharing. My husband are in a class called incredible

infants. It is a class offered in our town for parents who have children

between 2-4 months apart. It is a 10 session class. Every night before the

class we would ask our selves " Are we going to tell the group tonight? " When it

came to our time to talk about Andi we never brought it up. Our fear was....

These were all first time parents-We didn't want the families to think Andi

would hold their child back. We didn't want to be judged. We didn't want Andi

to be looked at differently.. We had all of these concerns. Well last Wednesday

we let them into our life a little bit deeper. We decided to tell the group.

We were shocked in how amazing the group was. Their faces had dropped in shock

but they were very supportive. We left our group with no regrets and felt very

good about our decision. The next morning I got an email from a couple of the

mom's stated how brave we

are and are so happy that we shared. This confirmed for me that we made the

right decision. Yeah!!! I think this was the first step for us to be more open

about Andi. I think a lot of what this has to deal with is ME being the one to

tell people. I don't want everyone else going around town saying " Did you hear

about the Hummel's? " Does that make sense? Maybe I am just being a control

freak... lol... I am getting to the point where I do not care what people think,

this is who we are and that's that. However, my fear is that if people do find

out that this will define her and it shouldn't but I know how uneducated and

judgmental people can be. Time will tell...

Thank you to all of you ladies!!!

Re:Question

Hi

My son Hunter is nearly 1 so I don't know what I will do yet for school etc,

however when Hunter was first born we told everyone who was involved in our

lives. So friends, family, new doctors etc etc.

When Hunter was 2 months old I joined a mothers group (in the new town we were

moving too). I used to drive 2 hours each way from our old address every week

to be a part of this mothers group as we knew we were moving there and I wanted

to make some new friends. As yet I still haven't told my new friends Hunter has

MDS. I wanted them to get to know Hunter as Hunter and not automatically

associate him with his disability. I just thought that if I told them, then

every time they talked about him or thought of him, they would automatically see

the disability before they saw him.

When Hunter was 5 months old we moved to the new town. As yet we have only told

1 of our neighbours as we have become really close to them and they baby-sit

Hunter on the odd occasion, however I have asked them not to tell anyone else in

the street yet (very friendly street).

I'm glad I have done it this way and I stand by my decision. I am actually

planning on telling my mothers group next week (funny timing) and I know they

will all be shocked, but I'm also looking forward to educating them about MDS.

The reason I'm telling them now is because I have found myself in situations

where I've been talking to them and have gone to make a reference to Hunters MDS

or have gone to mention something to do with his physio or EI and I've had to

stop myself and hold back, which I don't want to do. They are my friends now,

and I want to be able to share ALL the ups and downs of raising Hunter with

them.

Anyway I'm not sure if this helps you in any way, I hope it does, and you are

right it is a personal decision. I think you will know who to tell and who

doesn't need to know.

Cheers

Fiona

Mum to Hunter 11 mths (MDS)

[Guest guest]

-

Unfortunately, the uneducated and judgemental will always be here. That is

a fact of life but you and Andi can show them by how proud of your daughter

you are now and SHE will show them later. My daughter has LOTS of friends

and LOVES to meet new ones, so she talks to every kid in gymnastics or in

swim class or wherever she is. She is very friendly and usually disarms

them with her personality.

Darlene

> Thank you so much for sharing. My husband are in a class called

> incredible infants. It is a class offered in our town for parents who have

> children between 2-4 months apart. It is a 10 session class. Every night

> before the class we would ask our selves " Are we going to tell the group

> tonight? " When it came to our time to talk about Andi we never brought it

> up. Our fear was.... These were all first time parents-We didn't want the

> families to think Andi would hold their child back. We didn't want to be

> judged. We didn't want Andi to be looked at differently.. We had all of

> these concerns. Well last Wednesday we let them into our life a little bit

> deeper. We decided to tell the group. We were shocked in how amazing the

> group was. Their faces had dropped in shock but they were very supportive.

> We left our group with no regrets and felt very good about our decision. The

> next morning I got an email from a couple of the mom's stated how brave we

> are and are so happy that we shared. This confirmed for me that we made the

> right decision. Yeah!!! I think this was the first step for us to be more

> open about Andi. I think a lot of what this has to deal with is ME being the

> one to tell people. I don't want everyone else going around town saying " Did

> you hear about the Hummel's? " Does that make sense? Maybe I am just being a

> control freak... lol... I am getting to the point where I do not care what

> people think, this is who we are and that's that. However, my fear is that

> if people do find out that this will define her and it shouldn't but I know

> how uneducated and judgmental people can be. Time will tell...

>

> Thank you to all of you ladies!!!

>

>

>

> Re:Question

>

> Hi

>

> My son Hunter is nearly 1 so I don't know what I will do yet for school

> etc, however when Hunter was first born we told everyone who was involved in

> our lives. So friends, family, new doctors etc etc.

>

> When Hunter was 2 months old I joined a mothers group (in the new town we

> were moving too). I used to drive 2 hours each way from our old address

> every week to be a part of this mothers group as we knew we were moving

> there and I wanted to make some new friends. As yet I still haven't told my

> new friends Hunter has MDS. I wanted them to get to know Hunter as Hunter

> and not automatically associate him with his disability. I just thought that

> if I told them, then every time they talked about him or thought of him,

> they would automatically see the disability before they saw him.

>

> When Hunter was 5 months old we moved to the new town. As yet we have only

> told 1 of our neighbours as we have become really close to them and they

> baby-sit Hunter on the odd occasion, however I have asked them not to tell

> anyone else in the street yet (very friendly street).

>

> I'm glad I have done it this way and I stand by my decision. I am actually

> planning on telling my mothers group next week (funny timing) and I know

> they will all be shocked, but I'm also looking forward to educating them

> about MDS. The reason I'm telling them now is because I have found myself in

> situations where I've been talking to them and have gone to make a reference

> to Hunters MDS or have gone to mention something to do with his physio or EI

> and I've had to stop myself and hold back, which I don't want to do. They

> are my friends now, and I want to be able to share ALL the ups and downs of

> raising Hunter with them.

>

> Anyway I'm not sure if this helps you in any way, I hope it does, and you

> are right it is a personal decision. I think you will know who to tell and

> who doesn't need to know.

>

> Cheers

> Fiona

> Mum to Hunter 11 mths (MDS)

>

>

[Guest guest]

My favorite motto from a parent support group: " What works for your

child is what makes the choice right. " That is the motto of Hands and

Voices, a nationwide support and advocacy group for families who have a

child who is Deaf or Hard of Hearing.

I will say this in regard to education. I have always said it's ok to

keep your child's MDS a secret from his/her teacher(s) as long as s/he

has no physical characteristics, no delays, and no unique educational

needs (such as the need for OT, PT, or speech during the school day).

The more information your child's teacher has, the better equipped they

will be to help your child. The entire reason I am a part of this group

is because I had a student with MDS. As soon as I learned I was getting

this student, I immediately began researching on the Internet and came

across this group. If that parent had not disclosed her child's MDS, I

would have never found IMDSA and I certainly would not have had the

resources to meet that child's educational needs over those four years.

I really don't think a parent does their child any favors by not

disclosing such crucial information to the child's teacher.

A.

Special Educator

Simon Kenton High School

(859)960-0348

cynthia.jones@...

" Deaf People Can Do Anything Except Hear! " (I. King Jordan)

Confidentiality Notice - This email is intended only for the person to

whom it is addressed and may contain confidential information. Any

unauthorized review is prohibited. If you are not the intended

recipient, kindly contact the sender by reply email and destroy all

copies of the original message. If you are the intended recipient, but

do not wish to receive communication through this medium, please advise

the sender immediately.

________________________________

From: MosaicDS [mailto:MosaicDS ] On

Behalf Of Hummel

Sent: Sunday, September 14, 2008 12:07 PM

To: MosaicDS

Subject: Re: Re:Question

Thank you so much for sharing. My husband are in a class called

incredible infants. It is a class offered in our town for parents who

have children between 2-4 months apart. It is a 10 session class. Every

night before the class we would ask our selves " Are we going to tell the

group tonight? " When it came to our time to talk about Andi we never

brought it up. Our fear was.... These were all first time parents-We

didn't want the families to think Andi would hold their child back. We

didn't want to be judged. We didn't want Andi to be looked at

differently.. We had all of these concerns. Well last Wednesday we let

them into our life a little bit deeper. We decided to tell the group. We

were shocked in how amazing the group was. Their faces had dropped in

shock but they were very supportive. We left our group with no regrets

and felt very good about our decision. The next morning I got an email

from a couple of the mom's stated how br ave we

are and are so happy that we shared. This confirmed for me that we made

the right decision. Yeah!!! I think this was the first step for us to be

more open about Andi. I think a lot of what this has to deal with is ME

being the one to tell people. I don't want everyone else going around

town saying " Did you hear about the Hummel's? " Does that make sense?

Maybe I am just being a control freak... lol... I am getting to the

point where I do not care what people think, this is who we are and

that's that. However, my fear is that if people do find out that this

will define her and it shouldn't but I know how uneducated and

judgmental people can be. Time will tell...

Thank you to all of you ladies!!!

Re:Question

Hi

My son Hunter is nearly 1 so I don't know what I will do yet for school

etc, however when Hunter was first born we told everyone who was

involved in our lives. So friends, family, new doctors etc etc.

When Hunter was 2 months old I joined a mothers group (in the new town

we were moving too). I used to drive 2 hours each way from our old

address every week to be a part of this mothers group as we knew we were

moving there and I wanted to make some new friends. As yet I still

haven't told my new friends Hunter has MDS. I wanted them to get to know

Hunter as Hunter and not automatically associate him with his

disability. I just thought that if I told them, then every time they

talked about him or thought of him, they would automatically see the

disability before they saw him.

When Hunter was 5 months old we moved to the new town. As yet we have

only told 1 of our neighbours as we have become really close to them and

they baby-sit Hunter on the odd occasion, however I have asked them not

to tell anyone else in the street yet (very friendly street).

I'm glad I have done it this way and I stand by my decision. I am

actually planning on telling my mothers group next week (funny timing)

and I know they will all be shocked, but I'm also looking forward to

educating them about MDS. The reason I'm telling them now is because I

have found myself in situations where I've been talking to them and have

gone to make a reference to Hunters MDS or have gone to mention

something to do with his physio or EI and I've had to stop myself and

hold back, which I don't want to do. They are my friends now, and I want

to be able to share ALL the ups and downs of raising Hunter with them.

Anyway I'm not sure if this helps you in any way, I hope it does, and

you are right it is a personal decision. I think you will know who to

tell and who doesn't need to know.

Cheers

Fiona

Mum to Hunter 11 mths (MDS)

[Guest guest]

I am in with Hands and Voices locally.I just started getting involved

and I did not realize they wer nationwide, I guess.

In a sense, I can see your point on most of wht you said,

butI do have " one " question....What do " physical characteriscs have

to do with learning and ability? (Yousaid aslong as they have no

physical characteristics, delays, etc...) I can understand delays or

physical " impairments " , but " characteristics " ?? Before long, we, as a

world, will have everyone labeled according to looks....re you seeing

my point? Or did you did use a wrong choice of words and mean

physical impairments? Looks have nothing to do with abilities.

>

> My favorite motto from a parent support group: " What works for your

> child is what makes the choice right. " That is the motto of Hands

and

> Voices, a nationwide support and advocacy group for families who

have a

> child who is Deaf or Hard of Hearing.

>

>

>

> I will say this in regard to education. I have always said it's ok

to

> keep your child's MDS a secret from his/her teacher(s) as long as

s/he

> has no physical characteristics, no delays, and no unique

educational

> needs (such as the need for OT, PT, or speech during the school

day).

> The more information your child's teacher has, the better equipped

they

> will be to help your child. The entire reason I am a part of this

group

> is because I had a student with MDS. As soon as I learned I was

getting

> this student, I immediately began researching on the Internet and

came

> across this group. If that parent had not disclosed her child's

MDS, I

> would have never found IMDSA and I certainly would not have had the

> resources to meet that child's educational needs over those four

years.

> I really don't think a parent does their child any favors by not

> disclosing such crucial information to the child's teacher.

>

>

>

> A.

>

> Special Educator

>

> Simon Kenton High School

>

> (859)960-0348

>

> cynthia.jones@...

>

> " Deaf People Can Do Anything Except Hear! " (I. King Jordan)

>

> Confidentiality Notice - This email is intended only for the person

to

> whom it is addressed and may contain confidential information. Any

> unauthorized review is prohibited. If you are not the intended

> recipient, kindly contact the sender by reply email and destroy all

> copies of the original message. If you are the intended recipient,

but

> do not wish to receive communication through this medium, please

advise

> the sender immediately.

>

> ________________________________

>

> From: MosaicDS [mailto:MosaicDS ] On

> Behalf Of Hummel

> Sent: Sunday, September 14, 2008 12:07 PM

> To: MosaicDS

> Subject: Re: Re:Question

>

>

>

> Thank you so much for sharing. My husband are in a class called

> incredible infants. It is a class offered in our town for parents

who

> have children between 2-4 months apart. It is a 10 session class.

Every

> night before the class we would ask our selves " Are we going to

tell the

> group tonight? " When it came to our time to talk about Andi we never

> brought it up. Our fear was.... These were all first time parents-We

> didn't want the families to think Andi would hold their child back.

We

> didn't want to be judged. We didn't want Andi to be looked at

> differently.. We had all of these concerns. Well last Wednesday we

let

> them into our life a little bit deeper. We decided to tell the

group. We

> were shocked in how amazing the group was. Their faces had dropped

in

> shock but they were very supportive. We left our group with no

regrets

> and felt very good about our decision. The next morning I got an

email

> from a couple of the mom's stated how br ave we

> are and are so happy that we shared. This confirmed for me that we

made

> the right decision. Yeah!!! I think this was the first step for us

to be

> more open about Andi. I think a lot of what this has to deal with

is ME

> being the one to tell people. I don't want everyone else going

around

> town saying " Did you hear about the Hummel's? " Does that make sense?

> Maybe I am just being a control freak... lol... I am getting to the

> point where I do not care what people think, this is who we are and

> that's that. However, my fear is that if people do find out that

this

> will define her and it shouldn't but I know how uneducated and

> judgmental people can be. Time will tell...

>

> Thank you to all of you ladies!!!

>

>

>

> Re:Question

>

> Hi

>

> My son Hunter is nearly 1 so I don't know what I will do yet for

school

> etc, however when Hunter was first born we told everyone who was

> involved in our lives. So friends, family, new doctors etc etc.

>

> When Hunter was 2 months old I joined a mothers group (in the new

town

> we were moving too). I used to drive 2 hours each way from our old

> address every week to be a part of this mothers group as we knew we

were

> moving there and I wanted to make some new friends. As yet I still

> haven't told my new friends Hunter has MDS. I wanted them to get to

know

> Hunter as Hunter and not automatically associate him with his

> disability. I just thought that if I told them, then every time they

> talked about him or thought of him, they would automatically see the

> disability before they saw him.

>

> When Hunter was 5 months old we moved to the new town. As yet we

have

> only told 1 of our neighbours as we have become really close to

them and

> they baby-sit Hunter on the odd occasion, however I have asked them

not

> to tell anyone else in the street yet (very friendly street).

>

> I'm glad I have done it this way and I stand by my decision. I am

> actually planning on telling my mothers group next week (funny

timing)

> and I know they will all be shocked, but I'm also looking forward to

> educating them about MDS. The reason I'm telling them now is

because I

> have found myself in situations where I've been talking to them and

have

> gone to make a reference to Hunters MDS or have gone to mention

> something to do with his physio or EI and I've had to stop myself

and

> hold back, which I don't want to do. They are my friends now, and I

want

> to be able to share ALL the ups and downs of raising Hunter with

them.

>

> Anyway I'm not sure if this helps you in any way, I hope it does,

and

> you are right it is a personal decision. I think you will know who

to

> tell and who doesn't need to know.

>

> Cheers

> Fiona

> Mum to Hunter 11 mths (MDS)

>

>

[Guest guest]

This is something I still struggle with and my daugther Lindsey is

22. We found out she had MDS when she was 4 1/2 years old. At that

time the geneticist felt it wasn't necessary to tell others of her

diagnosis because few people would understand what is means. He told

us in situations where we felt it might be helpful or where we felt a

need to explain her problems it would be reasonable to call her

condition " partial Down Syndrome. " The only people who know about

her diagnosis are my mother, two of my friends, her sister and of

course Lindsey herself. Some how the school found out about the MDS

and used that to label her as having Cognitive Disabilities when she

was in fifth grade. I did not agree with this and three years later

they re-evaluated her and labeled her as having Learning

Disabilities. She currently is a Senior in College and doing well.

Most recently Lindsey went to see an allergist and mentioned to him

that she has MDS and when I received a copy of his notes from her

office visit it stated she had Down Syndrome. I guess this is why I

still struggle to tell others for fear of them not understanding and

misinterpreting what it means.

Lynne

>

> Hello everyone..

>

> I have a quick question that I know that some will say it is a

personal choice but I would love to hear some feedback on what you

would do or have done. Andi (our daughter) is 6 months old and we

found out almost four months ago that she has MDS. My husband and I

have went back and forth on whether we should be open about it with

others. Our families know and some close friends. We have asked

that our family and friends not say anything in fear that Andi will

be judged before anyone knows her. We did not want anyone to look at

her and try to find something wrong with her, we wanted people to

look at her for who she is. Now that we are more educated and feel

that we have more support through books, family and friends we are

not sure if we are making the right decision. I am always so

hesitant to talk about Andi's diagnoses with others. Our family is

from a small town (about an hour from us) and I don't want the word

to travel so fast that before

> you know it I get phone calls asking why I haven't told people

Andi has Down syndrome. I am also in fear that if this does not

effect her that I put a label on her by telling people. A label that

I might never get off. If this does not effect her and we have not

told her about her unique diagnoses and someone else does how will

that effect her? Or do you tell her from the beginning? Or am I

just getting way ahead of myself? Any ideas thoughts or experiences

will help...

>

> Thank you

>

> Hummel

>

>

>

>

>

>

[Guest guest]

Lynne,

Sorry to interrupt, but the doctors do that with Charlie Hart as

well. In America, at least, you have a right to request that

incorrect information in a medical record be corrected. Problem with

us is we are way too busy to go to every medical file and have this

corrected. We have moved around so much that it would be a big

headache for me right now. What is an appropriate thing to say (from

this point on) or should I say a tactful way to mention that this

should be corrected when O see it in the future? There are some

doctors from the past (who insisted that the DNA would not change

(when he had only 7 cells looked at and was diagnosed DS when he was

a baby) that I would love to send a hasty letter to informing them

that " they were grossly incorrect " . I have refrained,though.

> >

> > Hello everyone..

> >

> > I have a quick question that I know that some will say it is a

> personal choice but I would love to hear some feedback on what you

> would do or have done. Andi (our daughter) is 6 months old and we

> found out almost four months ago that she has MDS. My husband and

I

> have went back and forth on whether we should be open about it with

> others. Our families know and some close friends. We have asked

> that our family and friends not say anything in fear that Andi will

> be judged before anyone knows her. We did not want anyone to look

at

> her and try to find something wrong with her, we wanted people to

> look at her for who she is. Now that we are more educated and feel

> that we have more support through books, family and friends we are

> not sure if we are making the right decision. I am always so

> hesitant to talk about Andi's diagnoses with others. Our family is

> from a small town (about an hour from us) and I don't want the word

> to travel so fast that before

> > you know it I get phone calls asking why I haven't told people

> Andi has Down syndrome. I am also in fear that if this does not

> effect her that I put a label on her by telling people. A label

that

> I might never get off. If this does not effect her and we have not

> told her about her unique diagnoses and someone else does how will

> that effect her? Or do you tell her from the beginning? Or am I

> just getting way ahead of myself? Any ideas thoughts or

experiences

> will help...

> >

> > Thank you

> >

> > Hummel

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi ,

We found out about Martim having MDS when he was 2. He now is 8. We

chose to tell people only when they were able to understand what is MDS

without looking at him with pity and in a different manner. So, for some

people, even from my family we begin now to explain what is going on.

Other people are aware from the beggining. Off course, we could do this

because Martim doesn't have evident signs of trisomy 21. But I'm quite

convinced it was the right decision. Most of the time people are

surprised when we tell them now, what confirms that they've been

treating him just as any other kid. A few others were kind of suspicious

but respected our silence.

But school is a very different matter. Since the beggining I always

explained to educators and teachers and also seek for their support. I

believe this has been very helpful because we could get a lot of support

in the education field and this was important for Martim' development.

So, I think there's not a general answer wether you should tell or

not... I would say it depends on the people you're telling.

Concerning Martim, I recently asked a psychiatrist why doesn't he ask us

something about his condition. Because kids at school treat him

differently (even most of the times just trying to protect him...) and

he asked for the meaning of the word handicaped. She just answered that

for the kid it is not a big deal. From her experience, when the kids are

informed about their condition they don't have a negative reaction or

even value the issue. They just collect the information but are not hurt

by it. Recently Martim was a bity lazy in a special class he attends, so

he told the teacher he could not do the work because he was handicapped!

Without understanding really the meaning of the word, he was just trying

to escape from work because he thought this would give him a special

status... Be careful, these kids surprise us sometimes!

I hope this helps...

--

Afonso do Paço

IMDSA Family Connect Representative - Portugal

teresa@...

[Guest guest]

Family can say stupid things Trust me I know. Matter of fact I think we have all

opened our mouth and put our foot in it at least once. Bottom line is everyone

processes information diffrently and I have learned to take what my mother and

father in law say Whom are extremely educated people and just let it slide off

my back, MOST of the time. I may tell my mother or husband what I think about it

.. I know they mean well and sometimes you can catch them in the wrong " mood " to

dicuss things. We went through the same thing when Truett was born. We didnt

tell our family for a few days and then so on with friends. I think they talk to

other people because they are trying to cope or understand aswell. But as we all

know this is when you get old " wives tales " info and hearsay. The people that

need to know about Truett do and if I feel complelled to tell a stranger I do.

But I dont walk into a room and just announce it to everyone. I understand the

concern about

your child being judged or labeled. I dont want that at all. Best of luck in

how you handle things.

Subject: Re: Question

To: MosaicDS

Date: Saturday, September 13, 2008, 11:36 PM

You ladies have been amazing. We went to a wedding today and I could not wait to

get home and read what your thoughts were. Thank you so much for opening up and

sharing your experiences. We have felt little support from our family because

when we asked if we could keep this between our family they did not do that. We

felt as if we did not have time to process this information before they wanted

to tell everyone. Then my mother-n-law asked us if we were embarrassed of our

daughter. That comment has changed our relationship. It was like she did not get

it. She did not respect that this was really hard for us. It was only a week

that went by before we got people calling us or letters in the mail. Since then

I have really shut down from talking to my family. Every time I try to talk to

them they say she is so " typical " it is unreal. If I say something about MDS I

feel as though they get annoyed. I am a first time mom learning what it is like

being a mom and also learning about MDS. We have reached out to our Down

syndrome network here in Eugene, in hopes that we can get more support and meet

new friends. I am hoping that meeting some moms and their families will give me

the strength to be open about Andi. I have read the book A Roadmap to Holland.

Which is a great book. I am also reading GIFTS: Mothers Reflect on How Children

with Down Syndrome Enrich Their Lives. Reading these stories have made me have a

connection with moms that I have not been able to have since we found out about

Andi. It has been great having this support group. I want to try to make the

right choices for Andi and I am so thankful that I have you amazing mom's to

help us with our journey so thank you!!! If anyone one has any other thoughts or

experiences I would love to hear them.

Re: Question

,

Me thinks you protest too much. People might actually know you by your eye

color rather than that you are an author. The point was, it's all a part of who

you are.

If someone was looking for me they would say I have gorgeous brown eyes, long

silky blond hair, a voluptuous figure etc. (Just kidding.) So it seems to

me that's a part of who I am. I guess I can change that with green contact

lenses. But no one would know me on sight if they were told to look for a dental

hygienist.

Judie, mom to Christi, 29 and others

************ **

Psssst...Have you heard the news? There's a new fashion blog,

plus the latest fall trends and hair styles at StyleList.com.

(http://www.stylelis t.com/trends? ncid=aolsty00050 000000014)

[Guest guest]

What I MEANT by that was that you cannot hide physical

characteristics, so if your child has a lot of physical

characteristics of MDS, there's no point in trying to keep it a

secret from the teacher.

> >

> > My favorite motto from a parent support group: " What works for

your

> > child is what makes the choice right. " That is the motto of

Hands

> and

> > Voices, a nationwide support and advocacy group for families who

> have a

> > child who is Deaf or Hard of Hearing.

> >

> >

> >

> > I will say this in regard to education. I have always said it's

ok

> to

> > keep your child's MDS a secret from his/her teacher(s) as long as

> s/he

> > has no physical characteristics, no delays, and no unique

> educational

> > needs (such as the need for OT, PT, or speech during the school

> day).

> > The more information your child's teacher has, the better

equipped

> they

> > will be to help your child. The entire reason I am a part of

this

> group

> > is because I had a student with MDS. As soon as I learned I was

> getting

> > this student, I immediately began researching on the Internet and

> came

> > across this group. If that parent had not disclosed her child's

> MDS, I

> > would have never found IMDSA and I certainly would not have had

the

> > resources to meet that child's educational needs over those four

> years.

> > I really don't think a parent does their child any favors by not

> > disclosing such crucial information to the child's teacher.

> >

> >

> >

> > A.

> >

> > Special Educator

> >

> > Simon Kenton High School

> >

> > (859)960-0348

> >

> > cynthia.jones@

> >

> > " Deaf People Can Do Anything Except Hear! " (I. King Jordan)

> >

> > Confidentiality Notice - This email is intended only for the

person

> to

> > whom it is addressed and may contain confidential information.

Any

> > unauthorized review is prohibited. If you are not the intended

> > recipient, kindly contact the sender by reply email and destroy

all

> > copies of the original message. If you are the intended

recipient,

> but

> > do not wish to receive communication through this medium, please

> advise

> > the sender immediately.

> >

> > ________________________________

> >

> > From: MosaicDS [mailto:MosaicDS ]

On

> > Behalf Of Hummel

> > Sent: Sunday, September 14, 2008 12:07 PM

> > To: MosaicDS

> > Subject: Re: Re:Question

> >

> >

> >

> > Thank you so much for sharing. My husband are in a class called

> > incredible infants. It is a class offered in our town for parents

> who

> > have children between 2-4 months apart. It is a 10 session class.

> Every

> > night before the class we would ask our selves " Are we going to

> tell the

> > group tonight? " When it came to our time to talk about Andi we

never

> > brought it up. Our fear was.... These were all first time parents-

We

> > didn't want the families to think Andi would hold their child

back.

> We

> > didn't want to be judged. We didn't want Andi to be looked at

> > differently.. We had all of these concerns. Well last Wednesday

we

> let

> > them into our life a little bit deeper. We decided to tell the

> group. We

> > were shocked in how amazing the group was. Their faces had

dropped

> in

> > shock but they were very supportive. We left our group with no

> regrets

> > and felt very good about our decision. The next morning I got an

> email

> > from a couple of the mom's stated how br ave we

> > are and are so happy that we shared. This confirmed for me that

we

> made

> > the right decision. Yeah!!! I think this was the first step for

us

> to be

> > more open about Andi. I think a lot of what this has to deal with

> is ME

> > being the one to tell people. I don't want everyone else going

> around

> > town saying " Did you hear about the Hummel's? " Does that make

sense?

> > Maybe I am just being a control freak... lol... I am getting to

the

> > point where I do not care what people think, this is who we are

and

> > that's that. However, my fear is that if people do find out that

> this

> > will define her and it shouldn't but I know how uneducated and

> > judgmental people can be. Time will tell...

> >

> > Thank you to all of you ladies!!!

> >

> >

> >

> > Re:Question

> >

> > Hi

> >

> > My son Hunter is nearly 1 so I don't know what I will do yet for

> school

> > etc, however when Hunter was first born we told everyone who was

> > involved in our lives. So friends, family, new doctors etc etc.

> >

> > When Hunter was 2 months old I joined a mothers group (in the new

> town

> > we were moving too). I used to drive 2 hours each way from our old

> > address every week to be a part of this mothers group as we knew

we

> were

> > moving there and I wanted to make some new friends. As yet I still

> > haven't told my new friends Hunter has MDS. I wanted them to get

to

> know

> > Hunter as Hunter and not automatically associate him with his

> > disability. I just thought that if I told them, then every time

they

> > talked about him or thought of him, they would automatically see

the

> > disability before they saw him.

> >

> > When Hunter was 5 months old we moved to the new town. As yet we

> have

> > only told 1 of our neighbours as we have become really close to

> them and

> > they baby-sit Hunter on the odd occasion, however I have asked

them

> not

> > to tell anyone else in the street yet (very friendly street).

> >

> > I'm glad I have done it this way and I stand by my decision. I am

> > actually planning on telling my mothers group next week (funny

> timing)

> > and I know they will all be shocked, but I'm also looking forward

to

> > educating them about MDS. The reason I'm telling them now is

> because I

> > have found myself in situations where I've been talking to them

and

> have

> > gone to make a reference to Hunters MDS or have gone to mention

> > something to do with his physio or EI and I've had to stop myself

> and

> > hold back, which I don't want to do. They are my friends now, and

I

> want

> > to be able to share ALL the ups and downs of raising Hunter with

> them.

> >

> > Anyway I'm not sure if this helps you in any way, I hope it does,

> and

> > you are right it is a personal decision. I think you will know

who

> to

> > tell and who doesn't need to know.

> >

> > Cheers

> > Fiona

> > Mum to Hunter 11 mths (MDS)

> >

> >

[Guest guest]

You acn't label someone with cognitive disabilities based on MDS

alone. To qualify for services under that category, a child's IQ AND

adaptive behavior have to be at least two standard deviations below

the mean. In a nutshell, a score of below 70 on both would be

required. It's HIGHLY UNUSUAL to jump from cognitive disability to

learning disability. To be considered to have a learning disability,

a person mus have average to above average IQ with academic

performance scores well below average. There has to be a significant

gap. For her clssification to have changed, there would have had to

be a SIGNIFICANT jump in her IQ score -- somewhere around 30 points.

> >

> > Hello everyone..

> >

> > I have a quick question that I know that some will say it is a

> personal choice but I would love to hear some feedback on what you

> would do or have done. Andi (our daughter) is 6 months old and we

> found out almost four months ago that she has MDS. My husband and

I

> have went back and forth on whether we should be open about it with

> others. Our families know and some close friends. We have asked

> that our family and friends not say anything in fear that Andi will

> be judged before anyone knows her. We did not want anyone to look

at

> her and try to find something wrong with her, we wanted people to

> look at her for who she is. Now that we are more educated and feel

> that we have more support through books, family and friends we are

> not sure if we are making the right decision. I am always so

> hesitant to talk about Andi's diagnoses with others. Our family is

> from a small town (about an hour from us) and I don't want the word

> to travel so fast that before

> > you know it I get phone calls asking why I haven't told people

> Andi has Down syndrome. I am also in fear that if this does not

> effect her that I put a label on her by telling people. A label

that

> I might never get off. If this does not effect her and we have not

> told her about her unique diagnoses and someone else does how will

> that effect her? Or do you tell her from the beginning? Or am I

> just getting way ahead of myself? Any ideas thoughts or

experiences

> will help...

> >

> > Thank you

> >

> > Hummel

> >

> >

> >

> >

> >

> >

[Guest guest]

UGH!!!!!!!!! Sorry about the typos in the last post! Between trying

to type fast, a key sticking here or there, and my 6-year-old

demanding something to eat every time I sit down, it's a wonder I can

type ANYTHING at all!

> > >

> > > Hello everyone..

> > >

> > > I have a quick question that I know that some will say it is a

> > personal choice but I would love to hear some feedback on what

you

> > would do or have done. Andi (our daughter) is 6 months old and

we

> > found out almost four months ago that she has MDS. My husband

and

> I

> > have went back and forth on whether we should be open about it

with

> > others. Our families know and some close friends. We have asked

> > that our family and friends not say anything in fear that Andi

will

> > be judged before anyone knows her. We did not want anyone to

look

> at

> > her and try to find something wrong with her, we wanted people to

> > look at her for who she is. Now that we are more educated and

feel

> > that we have more support through books, family and friends we

are

> > not sure if we are making the right decision. I am always so

> > hesitant to talk about Andi's diagnoses with others. Our family

is

> > from a small town (about an hour from us) and I don't want the

word

> > to travel so fast that before

> > > you know it I get phone calls asking why I haven't told people

> > Andi has Down syndrome. I am also in fear that if this does not

> > effect her that I put a label on her by telling people. A label

> that

> > I might never get off. If this does not effect her and we have

not

> > told her about her unique diagnoses and someone else does how

will

> > that effect her? Or do you tell her from the beginning? Or am I

> > just getting way ahead of myself? Any ideas thoughts or

> experiences

> > will help...

> > >

> > > Thank you

> > >

> > > Hummel

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

, If you don't mind me asking, what state/school system are

you in? (Perhaps I should move there and my son would receive better

than expected treatment in regards to his school record and dinosaur

opinions). With good reason, I ask this question. Where I live and in

the past two counties I have lived in, unfortunately, someone with

MDS is considered to have DS and on their school record, they would

be listed as MI (mentally impaired). Without trying to sound rude,

how many books have you opened that talk about DS in general? Nearly

everyone I have opened states that people with all forms of DS are

cognitively impaired, whether this is true or not (which we all KNOW

is NOT true). I am not trying to be rude, but I feel like you are

under a rock. This EXACT POINT is what I have been trying to tell all

on the forum for a long time and I am getting flack for it. Finally,

I think others are beginning to see what is happening here.

Perhaps I " do " have a " strange " or " unique " way of stating things,

but fact is fact. (Of what is happening at least in my state.) I

cannot even get speech services and testing in the home and I have a

doctor's letter stating my son's chronic illness and need to stay

away from the school environment AND he has an IEP.

SUSan

> > >

> > > Hello everyone..

> > >

> > > I have a quick question that I know that some will say it is a

> > personal choice but I would love to hear some feedback on what

you

> > would do or have done. Andi (our daughter) is 6 months old and

we

> > found out almost four months ago that she has MDS. My husband

and

> I

> > have went back and forth on whether we should be open about it

with

> > others. Our families know and some close friends. We have asked

> > that our family and friends not say anything in fear that Andi

will

> > be judged before anyone knows her. We did not want anyone to

look

> at

> > her and try to find something wrong with her, we wanted people to

> > look at her for who she is. Now that we are more educated and

feel

> > that we have more support through books, family and friends we

are

> > not sure if we are making the right decision. I am always so

> > hesitant to talk about Andi's diagnoses with others. Our family

is

> > from a small town (about an hour from us) and I don't want the

word

> > to travel so fast that before

> > > you know it I get phone calls asking why I haven't told people

> > Andi has Down syndrome. I am also in fear that if this does not

> > effect her that I put a label on her by telling people. A label

> that

> > I might never get off. If this does not effect her and we have

not

> > told her about her unique diagnoses and someone else does how

will

> > that effect her? Or do you tell her from the beginning? Or am I

> > just getting way ahead of myself? Any ideas thoughts or

> experiences

> > will help...

> > >

> > > Thank you

> > >

> > > Hummel

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

I'm not under a rock, . According to IDEA, a cognitive

disability is based on scores on IQ tests and adaptive behavior and a

learning disability is based on a comparison of IQ and performance. I

do not know your son at all, so I cannot speak to why he does not

receive speech services. I do know that speech is a RELATED service

and one does not receive speech JUST because one has an IEP. In

order to qualify to receive speech services, the services must be

necessary for implementation of the IEP. For instance, a high school

student who does not enunciate his/her " r " sounds properly will not

receive speech therapy at school unless s/he has an IEP goal that

cannot be met without receiving therapy for the " r " sounds. On the

other hand, a young child whose speech has not developed enough to

communicate his/her wants and needs will qualify for services,

because there are a LOT of IEP goals that cannot be met if a child

cannot communicate.

To answer your question, I am in Northern KY in the Kenton County

School system. Honestly, we have had parents open enroll their kids

in our school because our special education department does such a

good job following the law and providing services to students with

special needs. I take my job seriously and I take the law seriously,

because every child deserves an education. I hear the horror stories

from around the country and think, " How in the world do they get away

with that?! " I will also say, though, that most teachers --

especailly special ed teachers -- are not " against " parents and

children. We got into the profession -- specifically special

education -- because we have a genuine concern for kids and we want

what is best for them. We are not " out to get " anybody and it is not

our goal in life to deny services to any child who needs them. Over

the years, I have taken MANY kids under my wing who did not qualify

for services, because I could not BEAR to see them floundering around

in the deep end with no life jacket. It's caused me A LOT of extra

work, but I didn't care, as long as the kids were helped.

Parents often tie the school's hands when they withhold valuable

information about their child. That is why I say, tell the child's

school about MDS. If they've never heard of it (I hadn't a few years

ago!), educate them! If your child had a severe peanut allergy, you

wouldn't try to hide that from the school; if your child had a severe

heart condition that caused him not to be able to participate in PE,

you would not try to hide that from the school; if your child were

blind, you would not try to hide that from the school. Why, then,

would you try to hide from the school a genetic condition that just

might cause your child to need extra help?

I remember Kristy's cookie analogy last year and I thought that was

so profound! The only way people are going to know more about MDS is

if they are educated. If the stereotype is out there that people

with MDS are " mentally impaired, " the only way that stereotype is

going to be dispelled is if those people MEET people with MDS, KNOW

that those people have MDS, and can CLEARLY see that those people are

not " mentally impaired. " I'm not saying you need to walk around with

a T-shirt that announces " My child has MDS and his IQ is high! " I AM

saying that some secrets are more harmful than helpful. If someone

is curious or asks, educate them!

> > > >

> > > > Hello everyone..

> > > >

> > > > I have a quick question that I know that some will say it is

a

> > > personal choice but I would love to hear some feedback on what

> you

> > > would do or have done. Andi (our daughter) is 6 months old and

> we

> > > found out almost four months ago that she has MDS. My husband

> and

> > I

> > > have went back and forth on whether we should be open about it

> with

> > > others. Our families know and some close friends. We have

asked

> > > that our family and friends not say anything in fear that Andi

> will

> > > be judged before anyone knows her. We did not want anyone to

> look

> > at

> > > her and try to find something wrong with her, we wanted people

to

> > > look at her for who she is. Now that we are more educated and

> feel

> > > that we have more support through books, family and friends we

> are

> > > not sure if we are making the right decision. I am always so

> > > hesitant to talk about Andi's diagnoses with others. Our

family

> is

> > > from a small town (about an hour from us) and I don't want the

> word

> > > to travel so fast that before

> > > > you know it I get phone calls asking why I haven't told

people

> > > Andi has Down syndrome. I am also in fear that if this does

not

> > > effect her that I put a label on her by telling people. A

label

> > that

> > > I might never get off. If this does not effect her and we have

> not

> > > told her about her unique diagnoses and someone else does how

> will

> > > that effect her? Or do you tell her from the beginning? Or am

I

> > > just getting way ahead of myself? Any ideas thoughts or

> > experiences

> > > will help...

> > > >

> > > > Thank you

> > > >

> > > > Hummel

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

- reading your initial post and now this one really makes me

think back to when Zoe was born. We had no clue that she had MDS

while I was pregnant. I had such a hard pregnancy with several

things that occured but the day she came was definitely the hardest.

We had a new pediatric doctor (young and this was her first time

dealing with this)and she came into the room and beat around the bush

with the idea that Zoe had Down syndrome. It wasn't until my OB

doctors and my nurses (who I got to know very well through my

pregnancy being in and out of the hospital so much)came in to the

room and sat me down and were completely up front and honest about

the diagnosis. That helped us deal with it throughout the week. It

was then that my husband and I decided we would tell each friend and

family member alone. I remember being so scared that people would

look at her differently or not want to be a part of her life but the

exact opposite happened. They embraced it! And that really

surprised me with some of our family!

I didn't experience the opposition until I was trying to settle on a

nanny. We had the opportunity to go in with friends that had twins

and use the same nanny. We went to meet her and I was commenting on

how 3 babies the same age would be a challenge and she said " no way-

I'm used to keeping 5 by myself at the daycare " - another story for

another day. Well, when we mentioned Zoe's MDS diagnosis, her mood

towards us changed. We went into the hospital for Zoe's heart

surgery the next week and our friend called us there to tell us that

the nanny said she didn't think she could handle 3 babies after all.

Nice, huh? But it all works out in the end and God knows what He is

doing.

Another funny encounter & then I'll stop- I share Zoe's diagnosis

whenever it comes up in conversation at work and have found many

wonderful times to educate people on the difference with MDS.

Several times my patients have said how comfortable and proud I sound

when I talk about Zoe and even about the MDS. They said it makes

them feel more comfortable with it. However, One patient asked me

how Zoe was doing developmentally and mentioned that his friend has a

daughter with Ds. His words were- " But she is eat up with it " (like

it was cancer or something). Made me laugh and I gently explained

that that probably wasn't the best expression to use in public

again!!

Suzanne, mom to Zoe, 14 mos, MDS

>

> You ladies have been amazing. We went to a wedding today and I

could not wait to get home and read what your thoughts were. Thank

you so much for opening up and sharing your experiences. We have

felt little support from our family because when we asked if we could

keep this between our family they did not do that. We felt as if we

did not have time to process this information before they wanted to

tell everyone. Then my mother-n-law asked us if we were embarrassed

of our daughter. That comment has changed our relationship. It was

like she did not get it. She did not respect that this was really

hard for us. It was only a week that went by before we got people

calling us or letters in the mail. Since then I have really shut

down from talking to my family. Every time I try to talk to them

they say she is so " typical " it is unreal. If I say something about

MDS I feel as though they get annoyed. I am a first time mom

learning what it is like

> being a mom and also learning about MDS. We have reached out to

our Down syndrome network here in Eugene, in hopes that we can get

more support and meet new friends. I am hoping that meeting some

moms and their families will give me the strength to be open about

Andi. I have read the book A Roadmap to Holland. Which is a great

book. I am also reading GIFTS: Mothers Reflect on How Children with

Down Syndrome Enrich Their Lives. Reading these stories have made me

have a connection with moms that I have not been able to have since

we found out about Andi. It has been great having this support

group. I want to try to make the right choices for Andi and I am so

thankful that I have you amazing mom's to help us with our journey so

thank you!!! If anyone one has any other thoughts or experiences I

would love to hear them.

>

>

>

>

>

> Re: Question

>

> ,

>

> Me thinks you protest too much. People might actually know you by

your eye

> color rather than that you are an author. The point was, it's all a

part of who

> you are.

>

> If someone was looking for me they would say I have gorgeous brown

eyes, long

> silky blond hair, a voluptuous figure etc. (Just kidding.) So it

seems to

> me that's a part of who I am. I guess I can change that with green

contact

> lenses. But no one would know me on sight if they were told to look

for a dental

> hygienist.

>

> Judie, mom to Christi, 29 and others

>

> ************ **

> Psssst...Have you heard the news? There's a new fashion blog,

> plus the latest fall trends and hair styles at StyleList.com.

>

> (http://www.stylelis t.com/trends? ncid=aolsty00050 000000014)

>

>

[Guest guest]

G! Do you seriously think I am an idiot? Or must I just explain

everything? Excuse me,he has an eligibilireport and it is written in

his IEP that he receive services from the school (2 and a half

segments per week). (Anything else you need to know?) Geez.... I KNOW

what IDEA says....so, now do you know of an advocate that will help

me fight them pro bono? I did not think you did.

For those just joining in this, I apologize for sounding snippy, but

OMG have you not been listening at all to what I hve been constantly

saying here that has been going on for 5 years?

I am very poor (moneywise) and there is NO attorney that I can find

to help me PRO BONO and very few that know the IDEA or specialize in

it.

I know what my son's IEP says and I know what services he is not

receiving at this moment and he has been in this county since June 20

WITH this IEP that clearly indicates SPEECH SERVICES. He has not

gotten what his IEP says since we have had it. Before you say it, I

have spent day after day after day in IEP meetings for 3 to 5 hours

at a time. I have tape recordings of these meetings. I have spent the

last penny I had hiring a lawyer to come and help me and they STILL

refused to follow the IEP.

I feel like I am talking to a brick wall.Next...

P.S. If it sound like I am angry, I am.

> > > > >

> > > > > Hello everyone..

> > > > >

> > > > > I have a quick question that I know that some will say it

is

> a

> > > > personal choice but I would love to hear some feedback on

what

> > you

> > > > would do or have done. Andi (our daughter) is 6 months old

and

> > we

> > > > found out almost four months ago that she has MDS. My

husband

> > and

> > > I

> > > > have went back and forth on whether we should be open about

it

> > with

> > > > others. Our families know and some close friends. We have

> asked

> > > > that our family and friends not say anything in fear that

Andi

> > will

> > > > be judged before anyone knows her. We did not want anyone to

> > look

> > > at

> > > > her and try to find something wrong with her, we wanted

people

> to

> > > > look at her for who she is. Now that we are more educated

and

> > feel

> > > > that we have more support through books, family and friends

we

> > are

> > > > not sure if we are making the right decision. I am always so

> > > > hesitant to talk about Andi's diagnoses with others. Our

> family

> > is

> > > > from a small town (about an hour from us) and I don't want

the

> > word

> > > > to travel so fast that before

> > > > > you know it I get phone calls asking why I haven't told

> people

> > > > Andi has Down syndrome. I am also in fear that if this does

> not

> > > > effect her that I put a label on her by telling people. A

> label

> > > that

> > > > I might never get off. If this does not effect her and we

have

> > not

> > > > told her about her unique diagnoses and someone else does how

> > will

> > > > that effect her? Or do you tell her from the beginning? Or

am

> I

> > > > just getting way ahead of myself? Any ideas thoughts or

> > > experiences

> > > > will help...

> > > > >

> > > > > Thank you

> > > > >

> > > > > Hummel

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >