Re: telling people about MDS

[Guest guest]

Hi,

As a mother to 2 girls (Trisomy 10q and Trisomy 21) I know how you just want

to protect them. I do too. I wish the neighbors would allow their kids to play

with my 5 year old and maybe the baby when she's bigger. But I don't think that

will happen ever. Sometimes I wonder if parents/kids think that they might

" catch " something if they are around our children. I sometimes get angry and cry

when I see my daughter watching the kids play outside our house and they don't

include her. I had the city put signs up on our street saying that it was a

" child sensory area " and a neighbor said " oh your the one that had them put in " .

I don't think he liked the signs as one was put in his yard. But they have to

be a certain distance from the childs house. So we basically advertized it too

but it still hurts that the neighbors ignore the girls. I also did it for my

girls protection. I don't go telling everyone about the girls diagnosis unless

asked and then I don't give out much info, unless I know the person. It's really

no ones business. They are kids and let them be kids.

Jen

From: alexcat172

To: MosaicDS

Sent: Saturday, April 28, 2007 12:53 PM

Subject: telling people about MDS

Hi,

It't me again! Thanks for all the advice on responding to the rude

comments on my son's size.

The other night my husband and I had an argument regarding telling

acquintances that Braxton has MDS. Initially we told all of our

close friends and family but did not feel that we needed to tell all

of our neighbors etc.. My husband took it upon himself to tell our

neighbor w/o discussing it with me first. He felt hat we eventually

have to tell them. I disagreed and was very angry. I feel that we

owe it to Braxton to let him be judged on himself not the MDS. I

feel that once people know they unconciously make a judgement and

look at him differently. I think it is my mothers instinct to want

to protect him. I feel that we don't know what the future has in

store for Braxton and we are selling him short. I am still angry

because now all of our neighbors will know and will view him not as

10 month old Braxton but as MDS Braxton. My husband feels I am

hiding and denying things.

feel we needed to explain or tell everyone about it.

Braxton 10 mos, MDS and Ashton 2.5

[Guest guest]

Oh forgot to mention this. Another group I chat with mentioned " Downs kids " ...I

wrote back and told them the correct termonology and sent them the " People First

Language " email and got tons of emails basically telling me it was no big deal,

I was petty, and who gives a d*** if it's spelled down or downs. This is

another group on yahoo with special needs children. I felt really attacked by

the group and maybe I shouldn't have. But I did and it still does hurt.

Jen

telling people about MDS

Hi,

It't me again! Thanks for all the advice on responding to the rude

comments on my son's size.

The other night my husband and I had an argument regarding telling

acquintances that Braxton has MDS. Initially we told all of our

close friends and family but did not feel that we needed to tell all

of our neighbors etc.. My husband took it upon himself to tell our

neighbor w/o discussing it with me first. He felt hat we eventually

have to tell them. I disagreed and was very angry. I feel that we

owe it to Braxton to let him be judged on himself not the MDS. I

feel that once people know they unconciously make a judgement and

look at him differently. I think it is my mothers instinct to want

to protect him. I feel that we don't know what the future has in

store for Braxton and we are selling him short. I am still angry

because now all of our neighbors will know and will view him not as

10 month old Braxton but as MDS Braxton. My husband feels I am

hiding and denying things.

feel we needed to explain or tell everyone about it.

Braxton 10 mos, MDS and Ashton 2.5

[Guest guest]

Hi, :

I am new to the group and although I have 4 grandchildren, my daughter, Lynn,

just had her first baby and Kate is MDS. She is adorable and 4 months old.

Needless to say, it has been an awful adjustment--especially for my 37 yr. old

daughter. I was heartsick to read your e-mail and the reply to it. Never

having any " special needs " kids in our families, this is all new to us. My

heart is broken for my daughter and I hate to think of so many unsensitive and

ignorant people out there to not even let their kids play with one of these

children. My daughter would be heartsick to read this. Do you EVER " get over "

all the disappointments?

My heart goes out to you and I can see too, how this can have an effect on a

marriage.

Thank you,

Carol Helm " Grammy " to Kate

Bolduc wrote:

Hi,

As a mother to 2 girls (Trisomy 10q and Trisomy 21) I know how you just want to

protect them. I do too. I wish the neighbors would allow their kids to play with

my 5 year old and maybe the baby when she's bigger. But I don't think that will

happen ever. Sometimes I wonder if parents/kids think that they might " catch "

something if they are around our children. I sometimes get angry and cry when I

see my daughter watching the kids play outside our house and they don't include

her. I had the city put signs up on our street saying that it was a " child

sensory area " and a neighbor said " oh your the one that had them put in " . I

don't think he liked the signs as one was put in his yard. But they have to be a

certain distance from the childs house. So we basically advertized it too but it

still hurts that the neighbors ignore the girls. I also did it for my girls

protection. I don't go telling everyone about the girls diagnosis unless asked

and then I don't give out much info,

unless I know the person. It's really no ones business. They are kids and let

them be kids.

Jen

From: alexcat172

To: MosaicDS

Sent: Saturday, April 28, 2007 12:53 PM

Subject: telling people about MDS

Hi,

It't me again! Thanks for all the advice on responding to the rude

comments on my son's size.

The other night my husband and I had an argument regarding telling

acquintances that Braxton has MDS. Initially we told all of our

close friends and family but did not feel that we needed to tell all

of our neighbors etc.. My husband took it upon himself to tell our

neighbor w/o discussing it with me first. He felt hat we eventually

have to tell them. I disagreed and was very angry. I feel that we

owe it to Braxton to let him be judged on himself not the MDS. I

feel that once people know they unconciously make a judgement and

look at him differently. I think it is my mothers instinct to want

to protect him. I feel that we don't know what the future has in

store for Braxton and we are selling him short. I am still angry

because now all of our neighbors will know and will view him not as

10 month old Braxton but as MDS Braxton. My husband feels I am

hiding and denying things.

feel we needed to explain or tell everyone about it.

Braxton 10 mos, MDS and Ashton 2.5

[Guest guest]

Hi, I am a mother of a 9 yr old son with MDS, Bertchel. He is the

love of my life. I had 3 children prior with no medical problems.

At 16mths I found out that he had MDS. I was so hurt. All I could

think was how would his life be. He had already been diagnosed with

Hirschsprung's Disease, BPD, and BPD. He keeps getting MRSA in his

bllod because of his pic line. Then as I called my mother an hour

later after finding out she asked me, " Do you love him any less? " of

couse I still loved him and that was all that mattered. I told his

father and till this day he still can not exept that he has MDS. He

says he is just fine. For me, at first when people asked me what

was wrong it was not because he looked like he had DS because you

would not know if I did not tell you he had MDS, But he was on O2

and on 24 hr feeds so he had his pump. So at first I just said

Hirschsprungs and BPD then as time passed I said he had

Hirschsprungs and MDS. Then as time passed I just say DS. If

someone comments " I would never had known " then I explain MDS. To

me it take to much of my time to explain to every person I meet so I

just say DS because people know what that is. In tiem you will find

your own way to cope with you child having MDS. You will cope in

your own way. Your husband may be right to a certain point. I do

not know because I do not know you. BUt even though I could admit

to my family what was wrong that did not mean I could admit to the

world. In time I could but we all have a greeving time of our own.

When I first found out they gave me a poem in my packet call my

visit to Holland. It really did help. If you did not get it let me

know and I will write a copy on the site. Just to let you know

everyone from friends and family to people in our neighborhood just

fall in love with him. We have people come by jsut to say hello to

him. He plays at the park with all the kids and they treat him like

nothing is wrong. Treat your child like you would a normal child

expect nothing less. Your child will become the best person he can

be. And that what anyone wants for their children to be there

personal best. Don't worry things will get better. Don't stay mad

with your husband this may also be his way of coping. By him

knowing that he can tell someone and them not judge him or your

child that may help him feel that everything will be ok. Good Luck

---

In MosaicDS , " alexcat172 " wrote:

>

> Hi,

> It't me again! Thanks for all the advice on responding to the rude

> comments on my son's size.

> The other night my husband and I had an argument regarding telling

> acquintances that Braxton has MDS. Initially we told all of our

> close friends and family but did not feel that we needed to tell

all

> of our neighbors etc.. My husband took it upon himself to tell our

> neighbor w/o discussing it with me first. He felt hat we

eventually

> have to tell them. I disagreed and was very angry. I feel that we

> owe it to Braxton to let him be judged on himself not the MDS. I

> feel that once people know they unconciously make a judgement and

> look at him differently. I think it is my mothers instinct to want

> to protect him. I feel that we don't know what the future has in

> store for Braxton and we are selling him short. I am still angry

> because now all of our neighbors will know and will view him not

as

> 10 month old Braxton but as MDS Braxton. My husband feels I am

> hiding and denying things.

> feel we needed to explain or tell everyone about it.

>

> Braxton 10 mos, MDS and Ashton 2.5

>

[Guest guest]

Okay Ya'll (Yes I live in SW VA),

I've been sitting back and reading some emails about this whole thing about

telling people if your child has MDS or not and some of the reply's have really

irritated me and I can no longer sit quietly, I just gotta say something.

I grew up until the age of 8 with a brother who had special needs (back in the

'70's), who had what I now believed to be Mosaic Down Syndrome (although never

tested for it or " normal " DS), Cleft Lip and Pallete, and never saw his 7th

birthday, he passed away from heart failure at 6 years old. He had 2 open heart

surgeries when open heart surgeries were very rare!

Having said that, I know what it's like to have a special needs child around

and I'm very proud of the fact that my son Austin has MDS or just plain ol'

ordinary DS. He is very cute and everyone loves him upon first sight. Yes it

took me about a year to get over the diagnosis of DS, but when I did, I realized

how special God must think I am to be honored with the privilege of getting to

raise an Angel such as Austin. That's how I think of it, and I think that's how

ya'll should think of it too. Who the *heck* cares what your neighbors think, or

strangers in the grocery store? We all know that other kids aren't going

" catch " Down Syndrome from playing with our kids, you need to tell those IGMO'S

(Redneck for Ignorant Morons) exactly that. Don't ever be afraid to fight for

your kids, no matter what the situation is, they have a right to be just

that....KIDS!!!!

People will only react to you depending on how you react to their

questions....if you express in your attitude that you are saddened that your

child has DS, they will in turn act that way, but if you act positively about

it, so will they. And to the Mom (I forget whom), whose neighbors won't let

their kids play with hers, stick a huge bill board size sign in their yard that

says IGMO'S LIVE HERE!! Or better yet, knock on their door with your child

beside you and introduce yourself and your child, and let them know what an

Angel your child is, and what they are missing out on.

Ya'll act like it's the end of the world having a child with DS or MDS and

it's not, it's the beginning of a whole new one that's way better than " normal "

or " ordinary " . Normal or ordinary in my book is boring and I'm far from boring

and so are my boys, Trey has ADHD and Austin has Down Syndrome and I couldn't be

more blessed!

Proud Mom,

Becky

Fairfield, VA

God Bless the Hokies!

Denis Helm wrote:

Hi, :

I am new to the group and although I have 4 grandchildren, my daughter, Lynn,

just had her first baby and Kate is MDS. She is adorable and 4 months old.

Needless to say, it has been an awful adjustment--especially for my 37 yr. old

daughter. I was heartsick to read your e-mail and the reply to it. Never having

any " special needs " kids in our families, this is all new to us. My heart is

broken for my daughter and I hate to think of so many unsensitive and ignorant

people out there to not even let their kids play with one of these children. My

daughter would be heartsick to read this. Do you EVER " get over " all the

disappointments?

My heart goes out to you and I can see too, how this can have an effect on a

marriage.

Thank you,

Carol Helm " Grammy " to Kate

Bolduc wrote:

Hi,

As a mother to 2 girls (Trisomy 10q and Trisomy 21) I know how you just want to

protect them. I do too. I wish the neighbors would allow their kids to play with

my 5 year old and maybe the baby when she's bigger. But I don't think that will

happen ever. Sometimes I wonder if parents/kids think that they might " catch "

something if they are around our children. I sometimes get angry and cry when I

see my daughter watching the kids play outside our house and they don't include

her. I had the city put signs up on our street saying that it was a " child

sensory area " and a neighbor said " oh your the one that had them put in " . I

don't think he liked the signs as one was put in his yard. But they have to be a

certain distance from the childs house. So we basically advertized it too but it

still hurts that the neighbors ignore the girls. I also did it for my girls

protection. I don't go telling everyone about the girls diagnosis unless asked

and then I don't give out much info,

unless I know the person. It's really no ones business. They are kids and let

them be kids.

Jen

From: alexcat172

To: MosaicDS

Sent: Saturday, April 28, 2007 12:53 PM

Subject: telling people about MDS

Hi,

It't me again! Thanks for all the advice on responding to the rude

comments on my son's size.

The other night my husband and I had an argument regarding telling

acquintances that Braxton has MDS. Initially we told all of our

close friends and family but did not feel that we needed to tell all

of our neighbors etc.. My husband took it upon himself to tell our

neighbor w/o discussing it with me first. He felt hat we eventually

have to tell them. I disagreed and was very angry. I feel that we

owe it to Braxton to let him be judged on himself not the MDS. I

feel that once people know they unconciously make a judgement and

look at him differently. I think it is my mothers instinct to want

to protect him. I feel that we don't know what the future has in

store for Braxton and we are selling him short. I am still angry

because now all of our neighbors will know and will view him not as

10 month old Braxton but as MDS Braxton. My husband feels I am

hiding and denying things.

feel we needed to explain or tell everyone about it.

Braxton 10 mos, MDS and Ashton 2.5

[Guest guest]

No it's not the end of the world and I don't act that way. It's just sad that I

have neighbors like I do and I don't need to introduce myself to them as they

know me and some have known me for 19 years. They have only acted like this

since my 2 girls have been born. I know the kids would play with my girls if

not for the parents. Parents talk and kids overhear things. I also grew up with

my sister in the 60s whom is severely handicapped. I know what it was like then

too. I also have and will always fight for my kids, I'm not afraid!!! Also I

am not saddened that my girls are Trisomy 10q/5p and Trisomy 21/MDS. God gave

me all my kids for a reason and I am very blessed and proud to have them.

telling people about MDS

Hi,

It't me again! Thanks for all the advice on responding to the rude

comments on my son's size.

The other night my husband and I had an argument regarding telling

acquintances that Braxton has MDS. Initially we told all of our

close friends and family but did not feel that we needed to tell all

of our neighbors etc.. My husband took it upon himself to tell our

neighbor w/o discussing it with me first. He felt hat we eventually

have to tell them. I disagreed and was very angry. I feel that we

owe it to Braxton to let him be judged on himself not the MDS. I

feel that once people know they unconciously make a judgement and

look at him differently. I think it is my mothers instinct to want

to protect him. I feel that we don't know what the future has in

store for Braxton and we are selling him short. I am still angry

because now all of our neighbors will know and will view him not as

10 month old Braxton but as MDS Braxton. My husband feels I am

hiding and denying things.

feel we needed to explain or tell everyone about it.

Braxton 10 mos, MDS and Ashton 2.5

[Guest guest]

maybe your neighbors do not know how to approach you. they may be

thinking something totally different than you are. don't assume the

worst. talk to them just like you would if you didn't have these

beautiful children. you may be surprised at how accepting they really

are. I have always told people that my daughter has Down syndrome I am

proud and very blessed to be her mother. I moved to a little town

about 2 months ago and I was worried how people would act towards her

but they love her everywhere we go there isn't any difference here

than there is in my other town. I know that someday there will

probably be someone who won't be accepting of h, but most people

are and treat her just like the other children in our town. I think

that hidiing the fact that your child has Down syndrome isn't helping

your child or the community that you live in. People won't change

their attitudes unless they are educated about people with special

needs. You could really help others by teaching people about your

children and paving the way for the future. So take the risk I think

you will be amazed at the love and acceptance that people have to offer.

Angie (mom to h 2 years old)

- In MosaicDS , " Bolduc " wrote:

>

> No it's not the end of the world and I don't act that way. It's

just sad that I have neighbors like I do and I don't need to introduce

myself to them as they know me and some have known me for 19 years.

They have only acted like this since my 2 girls have been born. I

know the kids would play with my girls if not for the parents. Parents

talk and kids overhear things. I also grew up with my sister in the

60s whom is severely handicapped. I know what it was like then too. I

also have and will always fight for my kids, I'm not afraid!!! Also I

am not saddened that my girls are Trisomy 10q/5p and Trisomy 21/MDS.

God gave me all my kids for a reason and I am very blessed and proud

to have them.

>

> telling people about MDS

>

> Hi,

> It't me again! Thanks for all the advice on responding to the rude

> comments on my son's size.

> The other night my husband and I had an argument regarding telling

> acquintances that Braxton has MDS. Initially we told all of our

> close friends and family but did not feel that we needed to tell all

> of our neighbors etc.. My husband took it upon himself to tell our

> neighbor w/o discussing it with me first. He felt hat we eventually

> have to tell them. I disagreed and was very angry. I feel that we

> owe it to Braxton to let him be judged on himself not the MDS. I

> feel that once people know they unconciously make a judgement and

> look at him differently. I think it is my mothers instinct to want

> to protect him. I feel that we don't know what the future has in

> store for Braxton and we are selling him short. I am still angry

> because now all of our neighbors will know and will view him not as

> 10 month old Braxton but as MDS Braxton. My husband feels I am

> hiding and denying things.

> feel we needed to explain or tell everyone about it.

>

> Braxton 10 mos, MDS and Ashton 2.5

>

>

[Guest guest]

Why do you assume I hide the fact that my children are Down syndrome and

Trisomy 10q? They know about the girls and their diagnosis for 5 years now.

Today my 5 year old went to play with the other kids and the kids took off to a

neighbors backyard. She can't go back there because of the 3 huge dogs. They

would knock her down and the family won't put them in the house. She really

wanted to go back but the neighbor told her to play in the front and later the

others would come out to play, but only after my daughter cried and went to nap.

My daughter tries to play with their toys and they take them away and the

parents don't say a word, but I do and then they tell the kids to share but

don't enforce it. They put their toys away so she can't play with them too.

There are 2 families next to me that won't allow kids to play on their yards!!

They have maids come clean their homes. They tell how much it cost them to adopt

their kids. No I'm not jealous nor do I care. I just would like the kids to

accept mine and no matter what I say they don't. But it's ok. If they can't see

past the Trisomy 10q and 21, that is their problem not mine. My girls will meet

and make friends anyways. It is hard to explain to my one daughter why the kids

won't play with her but maybe one day I will get her to understand. By the way,

I do not teach my girls to treat kids the way they treat her. Oh and by the way,

my neighbor that told my daughter to play in the front today until the other

kids came out, well her best friend has a daughter in a wheelchair (CP) and when

she is over, all the kids play with her. I'm happy you live in a town where

everyone is accepting of your daughter, but it's not like that everywhere in

this world and one day you probably will find that out and you'll see how much

it hurts your child. My sister in law wouldn't accept my daughter and said she

never would. Well soon after she said that, she was in a terrible accident and

guess what. She's handicapped now. Amazing what God can and will do. Oh and

now she's very accepting of my daughter.

telling people about MDS

>

> Hi,

> It't me again! Thanks for all the advice on responding to the rude

> comments on my son's size.

> The other night my husband and I had an argument regarding telling

> acquintances that Braxton has MDS. Initially we told all of our

> close friends and family but did not feel that we needed to tell all

> of our neighbors etc.. My husband took it upon himself to tell our

> neighbor w/o discussing it with me first. He felt hat we eventually

> have to tell them. I disagreed and was very angry. I feel that we

> owe it to Braxton to let him be judged on himself not the MDS. I

> feel that once people know they unconciously make a judgement and

> look at him differently. I think it is my mothers instinct to want

> to protect him. I feel that we don't know what the future has in

> store for Braxton and we are selling him short. I am still angry

> because now all of our neighbors will know and will view him not as

> 10 month old Braxton but as MDS Braxton. My husband feels I am

> hiding and denying things.

> feel we needed to explain or tell everyone about it.

>

> Braxton 10 mos, MDS and Ashton 2.5

>

>

[Guest guest]

,

If you don't mind my asking, what is Tisomy 10q? I've heard of Trisomy 18 but

not 10q and I'm just curious as to what it is. I guess your neighbors don't

know you as the Mom of two special needs children, maybe it would be a good idea

to talk to them about what your girls have and that way they would have a better

understanding. I can understand about the big dogs, maybe it would have been

better for your daughter if you or the neighbor would have taken her back there

and shown her the dogs (like through a sliding glass door or window). Not so

much as to frighten her or scare her of animals, but just to show her that they

are quite large and you and the neighbor don't or didn't want her to get hurt

(if they have a dog like mine a German Shepherd, who does't know their own

strength and loves kids).

Just offering some suggestions is all,

Becky

Bolduc wrote:

No it's not the end of the world and I don't act that way. It's just

sad that I have neighbors like I do and I don't need to introduce myself to them

as they know me and some have known me for 19 years. They have only acted like

this since my 2 girls have been born. I know the kids would play with my girls

if not for the parents. Parents talk and kids overhear things. I also grew up

with my sister in the 60s whom is severely handicapped. I know what it was like

then too. I also have and will always fight for my kids, I'm not afraid!!! Also

I am not saddened that my girls are Trisomy 10q/5p and Trisomy 21/MDS. God gave

me all my kids for a reason and I am very blessed and proud to have them.

telling people about MDS

Hi,

It't me again! Thanks for all the advice on responding to the rude

comments on my son's size.

The other night my husband and I had an argument regarding telling

acquintances that Braxton has MDS. Initially we told all of our

close friends and family but did not feel that we needed to tell all

of our neighbors etc.. My husband took it upon himself to tell our

neighbor w/o discussing it with me first. He felt hat we eventually

have to tell them. I disagreed and was very angry. I feel that we

owe it to Braxton to let him be judged on himself not the MDS. I

feel that once people know they unconciously make a judgement and

look at him differently. I think it is my mothers instinct to want

to protect him. I feel that we don't know what the future has in

store for Braxton and we are selling him short. I am still angry

because now all of our neighbors will know and will view him not as

10 month old Braxton but as MDS Braxton. My husband feels I am

hiding and denying things.

feel we needed to explain or tell everyone about it.

Braxton 10 mos, MDS and Ashton 2.5

[Guest guest]

Jen

I think I would have felt attacked too! You were just trying to give them some

insite on what the correct language should be. It doesn't bother me so much that

people use the word Downs. What bothers me more is that they say Downs Kids. Or

my child IS Down syndrome....My child IS a boy! But, he HAS MDS.

LOL Everyone is entitled to their own pet peeves I suppose!

But, ALL organizations are trying to promote People First Language. It is a

way to get away from stereotypes and teasing. So, I think you did the right

thing by educating them. Maybe not everyone felt that you were being Petty and

even those who said they did, might think twice about their language!

Kristy

Bolduc wrote:

Oh forgot to mention this. Another group I chat with mentioned " Downs

kids " ...I wrote back and told them the correct termonology and sent them the

" People First Language " email and got tons of emails basically telling me it was

no big deal, I was petty, and who gives a d*** if it's spelled down or downs.

This is another group on yahoo with special needs children. I felt really

attacked by the group and maybe I shouldn't have. But I did and it still does

hurt.

Jen

telling people about MDS

Hi,

It't me again! Thanks for all the advice on responding to the rude

comments on my son's size.

The other night my husband and I had an argument regarding telling

acquintances that Braxton has MDS. Initially we told all of our

close friends and family but did not feel that we needed to tell all

of our neighbors etc.. My husband took it upon himself to tell our

neighbor w/o discussing it with me first. He felt hat we eventually

have to tell them. I disagreed and was very angry. I feel that we

owe it to Braxton to let him be judged on himself not the MDS. I

feel that once people know they unconciously make a judgement and

look at him differently. I think it is my mothers instinct to want

to protect him. I feel that we don't know what the future has in

store for Braxton and we are selling him short. I am still angry

because now all of our neighbors will know and will view him not as

10 month old Braxton but as MDS Braxton. My husband feels I am

hiding and denying things.

feel we needed to explain or tell everyone about it.

Braxton 10 mos, MDS and Ashton 2.5

[Guest guest]

Jen

With Summer coming on, maybe you could organize a party of some sorts to

invite the neighborhood kids. This would bring them in and allow them to play

with your daughter and realize that she is just like them and just wants to

play.

I realize it is the parents at this point, who are keeping the kids from her,

but maybe if you could do something like an outdoor party, the kids would all

have such a great time and want to come back. In fact, maybe if you had a bar b

que, and invite the families, they would realize that your daugther's conditions

are not catching. Then they would let their kids come back to play.

Just a thought...

Kristy

Bolduc wrote:

Hi,

As a mother to 2 girls (Trisomy 10q and Trisomy 21) I know how you just want to

protect them. I do too. I wish the neighbors would allow their kids to play with

my 5 year old and maybe the baby when she's bigger. But I don't think that will

happen ever. Sometimes I wonder if parents/kids think that they might " catch "

something if they are around our children. I sometimes get angry and cry when I

see my daughter watching the kids play outside our house and they don't include

her. I had the city put signs up on our street saying that it was a " child

sensory area " and a neighbor said " oh your the one that had them put in " . I

don't think he liked the signs as one was put in his yard. But they have to be a

certain distance from the childs house. So we basically advertized it too but it

still hurts that the neighbors ignore the girls. I also did it for my girls

protection. I don't go telling everyone about the girls diagnosis unless asked

and then I don't give out much info,

unless I know the person. It's really no ones business. They are kids and let

them be kids.

Jen

From: alexcat172

To: MosaicDS

Sent: Saturday, April 28, 2007 12:53 PM

Subject: telling people about MDS

Hi,

It't me again! Thanks for all the advice on responding to the rude

comments on my son's size.

The other night my husband and I had an argument regarding telling

acquintances that Braxton has MDS. Initially we told all of our

close friends and family but did not feel that we needed to tell all

of our neighbors etc.. My husband took it upon himself to tell our

neighbor w/o discussing it with me first. He felt hat we eventually

have to tell them. I disagreed and was very angry. I feel that we

owe it to Braxton to let him be judged on himself not the MDS. I

feel that once people know they unconciously make a judgement and

look at him differently. I think it is my mothers instinct to want

to protect him. I feel that we don't know what the future has in

store for Braxton and we are selling him short. I am still angry

because now all of our neighbors will know and will view him not as

10 month old Braxton but as MDS Braxton. My husband feels I am

hiding and denying things.

feel we needed to explain or tell everyone about it.

Braxton 10 mos, MDS and Ashton 2.5

[Guest guest]

When Tim was first dx I told everyone. It was my way of coping with it. The more

I said it, the more it seemed real to me. Then, as he grew, I didn't tell anyone

at all. I would wait for them to get to know him first and then would tell them.

That way they didn't limit their expectations.

I imagine that when your husband told the neighbors, it was just his way of

coping with it. Everyone copes in a different way. So, now that your neighbors

do know, let them know how great Braxton is doing. Let them know about mosaic

Down syndrome and what it is. And, tell them that you expect to raise Braxton

just like Ashton and that you don't want them to lower their expectations

either.

Braxton is going to amaze your family and your neighbors in all that he does!

Try not to be so angry with your husband. I am sure he didn't think to talk

with you about it first. It probably just came up in conversation. And, I think

it will be ok that they know Braxton has MDS. Because now, they can share the

joy with you when he accomplishes all of his milestones!

Kristy

alexcat172 wrote:

Hi,

It't me again! Thanks for all the advice on responding to the rude

comments on my son's size.

The other night my husband and I had an argument regarding telling

acquintances that Braxton has MDS. Initially we told all of our

close friends and family but did not feel that we needed to tell all

of our neighbors etc.. My husband took it upon himself to tell our

neighbor w/o discussing it with me first. He felt hat we eventually

have to tell them. I disagreed and was very angry. I feel that we

owe it to Braxton to let him be judged on himself not the MDS. I

feel that once people know they unconciously make a judgement and

look at him differently. I think it is my mothers instinct to want

to protect him. I feel that we don't know what the future has in

store for Braxton and we are selling him short. I am still angry

because now all of our neighbors will know and will view him not as

10 month old Braxton but as MDS Braxton. My husband feels I am

hiding and denying things.

feel we needed to explain or tell everyone about it.

Braxton 10 mos, MDS and Ashton 2.5

[Guest guest]

You are so right Becky we are BLESSED and forget anyone who thinks different

Becky wrote: Okay Ya'll (Yes I live in SW

VA),

I've been sitting back and reading some emails about this whole thing about

telling people if your child has MDS or not and some of the reply's have really

irritated me and I can no longer sit quietly, I just gotta say something.

I grew up until the age of 8 with a brother who had special needs (back in the

'70's), who had what I now believed to be Mosaic Down Syndrome (although never

tested for it or " normal " DS), Cleft Lip and Pallete, and never saw his 7th

birthday, he passed away from heart failure at 6 years old. He had 2 open heart

surgeries when open heart surgeries were very rare!

Having said that, I know what it's like to have a special needs child around and

I'm very proud of the fact that my son Austin has MDS or just plain ol' ordinary

DS. He is very cute and everyone loves him upon first sight. Yes it took me

about a year to get over the diagnosis of DS, but when I did, I realized how

special God must think I am to be honored with the privilege of getting to raise

an Angel such as Austin. That's how I think of it, and I think that's how ya'll

should think of it too. Who the *heck* cares what your neighbors think, or

strangers in the grocery store? We all know that other kids aren't going " catch "

Down Syndrome from playing with our kids, you need to tell those IGMO'S (Redneck

for Ignorant Morons) exactly that. Don't ever be afraid to fight for your kids,

no matter what the situation is, they have a right to be just that....KIDS!!!!

People will only react to you depending on how you react to their

questions....if you express in your attitude that you are saddened that your

child has DS, they will in turn act that way, but if you act positively about

it, so will they. And to the Mom (I forget whom), whose neighbors won't let

their kids play with hers, stick a huge bill board size sign in their yard that

says IGMO'S LIVE HERE!! Or better yet, knock on their door with your child

beside you and introduce yourself and your child, and let them know what an

Angel your child is, and what they are missing out on.

Ya'll act like it's the end of the world having a child with DS or MDS and it's

not, it's the beginning of a whole new one that's way better than " normal " or

" ordinary " . Normal or ordinary in my book is boring and I'm far from boring and

so are my boys, Trey has ADHD and Austin has Down Syndrome and I couldn't be

more blessed!

Proud Mom,

Becky

Fairfield, VA

God Bless the Hokies!

Denis Helm wrote:

Hi, :

I am new to the group and although I have 4 grandchildren, my daughter, Lynn,

just had her first baby and Kate is MDS. She is adorable and 4 months old.

Needless to say, it has been an awful adjustment--especially for my 37 yr. old

daughter. I was heartsick to read your e-mail and the reply to it. Never having

any " special needs " kids in our families, this is all new to us. My heart is

broken for my daughter and I hate to think of so many unsensitive and ignorant

people out there to not even let their kids play with one of these children. My

daughter would be heartsick to read this. Do you EVER " get over " all the

disappointments?

My heart goes out to you and I can see too, how this can have an effect on a

marriage.

Thank you,

Carol Helm " Grammy " to Kate

Bolduc wrote:

Hi,

As a mother to 2 girls (Trisomy 10q and Trisomy 21) I know how you just want to

protect them. I do too. I wish the neighbors would allow their kids to play with

my 5 year old and maybe the baby when she's bigger. But I don't think that will

happen ever. Sometimes I wonder if parents/kids think that they might " catch "

something if they are around our children. I sometimes get angry and cry when I

see my daughter watching the kids play outside our house and they don't include

her. I had the city put signs up on our street saying that it was a " child

sensory area " and a neighbor said " oh your the one that had them put in " . I

don't think he liked the signs as one was put in his yard. But they have to be a

certain distance from the childs house. So we basically advertized it too but it

still hurts that the neighbors ignore the girls. I also did it for my girls

protection. I don't go telling everyone about the girls diagnosis unless asked

and then I don't give out much info,

unless I know the person. It's really no ones business. They are kids and let

them be kids.

Jen

From: alexcat172

To: MosaicDS

Sent: Saturday, April 28, 2007 12:53 PM

Subject: telling people about MDS

Hi,

It't me again! Thanks for all the advice on responding to the rude

comments on my son's size.

The other night my husband and I had an argument regarding telling

acquintances that Braxton has MDS. Initially we told all of our

close friends and family but did not feel that we needed to tell all

of our neighbors etc.. My husband took it upon himself to tell our

neighbor w/o discussing it with me first. He felt hat we eventually

have to tell them. I disagreed and was very angry. I feel that we

owe it to Braxton to let him be judged on himself not the MDS. I

feel that once people know they unconciously make a judgement and

look at him differently. I think it is my mothers instinct to want

to protect him. I feel that we don't know what the future has in

store for Braxton and we are selling him short. I am still angry

because now all of our neighbors will know and will view him not as

10 month old Braxton but as MDS Braxton. My husband feels I am

hiding and denying things.

feel we needed to explain or tell everyone about it.

Braxton 10 mos, MDS and Ashton 2.5