Re: How did you tell your family?

[Guest guest]

A nurse in the delivery room first observed Christi's possible Down syndrome.

The pediatrician, a family friend, thought she she was wrong, as did my my

best friend, an OT, founder and director of a very successful program for

children with developmental disabilities! I was the one telling everyone, yes,

she

does look just like her siblings, but I think she has Down syndrome...and I

don't remember any negative reactions from anyone.

Judie, mom to Christi, 27 and others

[Guest guest]

Kristy,

We found out when Aidan was about to turn 2 and he still wasn't talking very

well. At his 24 month check-up our Pediatrician started looking at his hands,

ears, etc. without telling us what he was looking for, and then said he was

going to run some tests to check for Down Syndrome. It was like a bomb dropped!

We had no inkling. A couple weeks later when we got the dx of MDS we didn't

tell anyone so we could take time to process (and cry, and worry, and cry some

more). Then we looked up everything we could online since the Ped. said he

basically knew nothing about MDS and " good luck! " With all the information we

sat down and wrote a letter explaining the genetic/scientific stuff and

basically said we would appreciate everyone treating him the same as they had

been and thanking them for their support. I think I approached it thinking

everyone else would be just as surprised as we were so we wanted to make the

news not so much of a blow as it was to us. However, several of our

family members made comments about how they knew all along and were just

waiting for us to figure it out. That really hurt to hear that people had been

talking about our child, speculating and thinking things behind our backs.

Since then, people act like they're treating him the same, but we still get

ignorant comments about how slow he is or stereotypes about how they feel he's

going to grow up. They all say they're really supportive, but it's clear that

no matter what we do, they'll always treat him as " special " or just different,

which is dissappointing, but part of life I guess. As long as WE give him all

the benefit of the doubt, set his expectations high and never treat him like he

can't accomplish anything, that's all that matters.

stephanie

Aidan 3 1/2 MDS, a 2, 5 weeks

Kristy Colvin wrote:

Hi Everyone,

I am working on writing some new documents to include in our member

information packet. One paper I am writing concerns how people tell their

friends, family and children their new baby or older child has MDS. I know that

this can be a difficult thing to do and I think mainly it is because we want

everyone to see our children the way we see them; just wonderful and beautiful

children!

So, what I am looking for is comments on how you told your friends, family and

children and how they reacted and how you reacted to their reaction.

Thanks

Kristy

[Guest guest]

My friend's great grandchild has mosaic down syndrome. He is only 4 weeks old

and is beautiful.

When my friend and her family found out they all cried and were very upset.

Especially my friend as she could not see him as she had a cold and did not know

what to think. After really seeing him she completely fell in love with him.I

have

been supplying them with info from you people and little by little they are

coming around to realize that we all have our own imperfections in so many

different ways.

dottie

Kristy Colvin wrote:

Hi Everyone,

I am working on writing some new documents to include in our member

information packet. One paper I am writing concerns how people tell their

friends, family and children their new baby or older child has MDS. I know that

this can be a difficult thing to do and I think mainly it is because we want

everyone to see our children the way we see them; just wonderful and beautiful

children!

So, what I am looking for is comments on how you told your friends, family and

children and how they reacted and how you reacted to their reaction.

Thanks

Kristy

[Guest guest]

Thank you Dorothy for sharing this with us. And, thank you for being such a

wonderful friend to your friend and her family! I know that they must value that

friendship!

Please feel free to ask any questions you have on MDS to help the family and

let them know that they can contact IMDSA anytime and we will be very happy to

give them information!

Kristy

Dorothy Lebel wrote:

My friend's great grandchild has mosaic down syndrome. He is only 4 weeks old

and is beautiful.

When my friend and her family found out they all cried and were very upset.

Especially my friend as she could not see him as she had a cold and did not know

what to think. After really seeing him she completely fell in love with him.I

have

been supplying them with info from you people and little by little they are

coming around to realize that we all have our own imperfections in so many

different ways.

dottie

Kristy Colvin wrote:

Hi Everyone,

I am working on writing some new documents to include in our member

information packet. One paper I am writing concerns how people tell their

friends, family and children their new baby or older child has MDS. I know that

this can be a difficult thing to do and I think mainly it is because we want

everyone to see our children the way we see them; just wonderful and beautiful

children!

So, what I am looking for is comments on how you told your friends, family and

children and how they reacted and how you reacted to their reaction.

Thanks

Kristy

[Guest guest]

Thanks for sharing your story Judie! I am taking everyone's comments into

consideration for the paper I am writing.

Kristy

jhockel@... wrote:

A nurse in the delivery room first observed Christi's possible Down syndrome.

The pediatrician, a family friend, thought she she was wrong, as did my my

best friend, an OT, founder and director of a very successful program for

children with developmental disabilities! I was the one telling everyone, yes,

she

does look just like her siblings, but I think she has Down syndrome...and I

don't remember any negative reactions from anyone.

Judie, mom to Christi, 27 and others

[Guest guest]

Thank you for sharing this . I had read something similar about someone

writing a letter and I did like that idea. Did you give the letter to even your

parents? Or, did you tell your parents directly?

If it is any consulation, my family also said things like " I knew there was

something wrong " or " I wondered if he had Down syndrome. " and that bothered me

too. So, I definately will add that to the paper I am writing. Also, my family

did treat Tim " special " when he was younger, but now that he is older, they do

not treat him too differently. There are a few times that I am bothered by my

mother's comments. I know she doesn't mean anything by them. But one thing

particular that she says is " Tim likes to watch the Hunchback of Notre Dame

because he identifies with Quasi Moto because he is different " That drives me

nuts! I asked her why it was that Garrett and everyone else in the world liked

that movie! She, of course, didn't have an answer for that.

Thanks for your comments

Kristy

and wrote:

Kristy,

We found out when Aidan was about to turn 2 and he still wasn't talking very

well. At his 24 month check-up our Pediatrician started looking at his hands,

ears, etc. without telling us what he was looking for, and then said he was

going to run some tests to check for Down Syndrome. It was like a bomb dropped!

We had no inkling. A couple weeks later when we got the dx of MDS we didn't

tell anyone so we could take time to process (and cry, and worry, and cry some

more). Then we looked up everything we could online since the Ped. said he

basically knew nothing about MDS and " good luck! " With all the information we

sat down and wrote a letter explaining the genetic/scientific stuff and

basically said we would appreciate everyone treating him the same as they had

been and thanking them for their support. I think I approached it thinking

everyone else would be just as surprised as we were so we wanted to make the

news not so much of a blow as it was to us. However, several of our

family members made comments about how they knew all along and were just waiting

for us to figure it out. That really hurt to hear that people had been talking

about our child, speculating and thinking things behind our backs. Since then,

people act like they're treating him the same, but we still get ignorant

comments about how slow he is or stereotypes about how they feel he's going to

grow up. They all say they're really supportive, but it's clear that no matter

what we do, they'll always treat him as " special " or just different, which is

dissappointing, but part of life I guess. As long as WE give him all the

benefit of the doubt, set his expectations high and never treat him like he

can't accomplish anything, that's all that matters.

stephanie

Aidan 3 1/2 MDS, a 2, 5 weeks

Kristy Colvin wrote:

Hi Everyone,

I am working on writing some new documents to include in our member

information packet. One paper I am writing concerns how people tell their

friends, family and children their new baby or older child has MDS. I know that

this can be a difficult thing to do and I think mainly it is because we want

everyone to see our children the way we see them; just wonderful and beautiful

children!

So, what I am looking for is comments on how you told your friends, family and

children and how they reacted and how you reacted to their reaction.

Thanks

Kristy

[Guest guest]

The night Anton was born, the obgyn told us " you make good ones, " and " I bet

you'll be back for one more. " We laughed, even though this wasn't in our

plans. We sent an e-mail to everyone we knew announcing his birth and called our

family and best friends to share our excitement. The next day, however, it

seemed that Anton, who had scored all fives on the apgar test, was gone for a

very long time for what should have been additional routine tests. When the

pediatrician came in, she told us, we have good news and bad news. The good

news was that Anton was healthy. The bad news was that from the creases on

Anton's hands and from his facial features, she suspected strongly he had DS

and a

subsequent cardiogram revealed small holes in his heart. We were in shock

and feared calling our parents, particularly Fred's who had responded badly at

first to the news of my pregnancy with my first child bc of a different, far

more trivial issue. For a good half a day we let the phone in our hospital

room ring and ring and ring while we tried to process our own feelings and then

share them with others. It was hardest to tell our parents and siblings. We

didn't say much at first--just that we are pretty sure Anton has DS and that

he's still a beautiful, much beloved boy. My father said in a very

disappointed voice, " Oh, , I had a feeling something like this might

happen

because of your age " [41.] My sister admitted that she felt disappointed too.

Fred's parents got off the phone very quickly. But we felt better just getting

the

news out. And our family came around. Fred's youngest brother rallied the

rest of his family to our side, calling with them on the phone to to tell us he

was there for us, that they all were. My aunt who has a son with DS called

my father to remind him that Fred and I are creative people, well equipped

emotionally and otherwise to deal with special challenges. That brought him

around. My mother-in-law showed up at our doorstep and fell in love with Anton

bc

she thinks he looks like her father and he shares her father's name. My

sister came around as well when she actually met Anton who fell in love with

her.

We got the news of his MDS several weeks later from the blood test. Our

pediatrician was excited because e felt the mosaicism explained why Anton's

muscle tone was so good and his ears (with this particular doctor--we've since

found a better one-- was obsessed) and head size and some other features were

so

typical. At first everyone was quite obsessed with how much Anton looked or

did not look like he has DS. This was frustrating to us--we had to explain

over and over again what our geneticists explained to us, that there is not an

equation between the degree one looks like one has DS and cognitive

function--so what did it matter? We also felt that Anton was being objectified

by this

type of discussion. MDS also gave some people an excuse to deny that anything

was wrong with Anton--I think they did this out of love, but also out of

fear. My in-laws kept wanting to take Anton to the Mayo clinic for further

diagnostic testing which I adamantly refused. I wanted to bond with my son

holistically and on my own terms.

We explained mosaic DS to our friends briefly--(we had so many people to

tell it got exhausting and I often ignored phone calls those first few months.)

All of our friends looked it up on the web for which we were very grateful.

We stressed that Anton may be no different from kids with common Down syndrome

or he may have many differences, but that no matter what we loved him and

would encourage him to be the happiest, kindest person he could be--our hope

was that they would do the same. Our friends by and large responded very well,

taking their cue from us and responding to Anton's wonderful personality. They

helped heal me those first few months for sure. I have a few friends who

persist in asking " what is he doing? Is he still meeting all those

developmental

milestones? " In fact Anton is doing very well, but I discourage this line of

questioning since again, my son is a whole person and I'm more concerned

about who he is than about what he's doing. I don't ask this about other

people's children.

Now that ANton is one and clearly has his own personality, interests,

expressions, people respond positively to him whether or not they know he has

DS.

We're open about his diagnosis and everyone in our lives knows, but it's no

longer something that comes up the first time we meet people since I don't think

there's any need for it to. I get the feeling that quite a few people are

routing for Anton who tends to bring out the best in everyone.

[Guest guest]

Hi Kristy

For us it was pretty easy. Everyone important in Adam's life was at the

hospital welcoming him when a nurse and a specialist walked in to talk to Adam's

parents. The nurse announced that everyone should leave the room and of course,

panic set in. Adam's mom said she wanted her family to stay and we all listened

as the doctor explained DS to use and how Adam was showing only very slight

signs. Four days later, the test results for MDS came back. Since then, we

have had to explain to a few people. I kind of think it is harder to explain

MDS. For example, Adam doesn't look like he has DS, so people wonder why he

sometimes drools a little, why he isn't talking yet or why he is immuture for

his age. I always want to explain to everyone (in defense of Adam) but his mom

has the attitude that it is no ones business why he is the way he is, and she

doesn't want to explain to anyone. As mom, it is her call, so only our

immediate family and a few close friends know.

Donna

Gram to Adam 3 1/2 MDS and Skylar 3 1/2

Kristy Colvin wrote:

Hi Everyone,

I am working on writing some new documents to include in our member information

packet. One paper I am writing concerns how people tell their friends, family

and children their new baby or older child has MDS. I know that this can be a

difficult thing to do and I think mainly it is because we want everyone to see

our children the way we see them; just wonderful and beautiful children!

So, what I am looking for is comments on how you told your friends, family and

children and how they reacted and how you reacted to their reaction.

Thanks

Kristy

[Guest guest]

Well the day that Layla was born everyone was there but only opted

to tell my parents their concerns and my daughters godparents, and a

few close relatives..and even at that time it was very shocking to

everyone, it was very bittersweet...i had just delivered and an 1 hr

later and a friend of mine who was the nurse came in and asked about

my amnio..(didn't have one) and i told her be upfront with me, she

said they have concerns shes down's...so it was just a little

overwhelming...came home on a friday and got the results on a

thursday late afternoon, when to churhc and then went to my

family's home, told them that same day i got the results, they were

very supportive and loving of course they cried but i was very firm

in saying that dont treat her different just love her more....i

answered their questions, concerns and moved on pretty quick...i

think its better to do it at the same time...(for family) and for

everyone else if i think you need to know then i will tell you but

if not i just dont....and now after accepting everything i still do

say that i have the most perfect child....and she is all mine...

gina mommy of layla 6 mos...

>

> Hi Everyone,

> I am working on writing some new documents to include in our

member information packet. One paper I am writing concerns how

people tell their friends, family and children their new baby or

older child has MDS. I know that this can be a difficult thing to do

and I think mainly it is because we want everyone to see our

children the way we see them; just wonderful and beautiful children!

> So, what I am looking for is comments on how you told your

friends, family and children and how they reacted and how you

reacted to their reaction.

> Thanks

> Kristy

>

>

>

[Guest guest]

Kristy,

We called and told our parents first, but they were the ones that said they

already knew and were just waiting for us to figure it out. That comment about

Quasi Moto sounds very familiar. My sister sat and told me the other day that

Aidan won't be " that different " growing up and that I'm lucky he doesn't have

behavior issues - he's just immature. I kind of thought, " thanks for the

assessment you know nothing about and I didn't ask for - not to mention

imbedding an insult within a compliment, " but I know they never mean for the

comments to sound the way they do. Everyone has good intentions, I just wish

they would not act like such pros on the subject and insert their comments here

and there without invitations.

I'm intrigued to see this paper you're writing when you're all done. Good

luck!

Kristy Colvin wrote:

Thank you for sharing this . I had read something similar about

someone writing a letter and I did like that idea. Did you give the letter to

even your parents? Or, did you tell your parents directly?

If it is any consulation, my family also said things like " I knew there was

something wrong " or " I wondered if he had Down syndrome. " and that bothered me

too. So, I definately will add that to the paper I am writing. Also, my family

did treat Tim " special " when he was younger, but now that he is older, they do

not treat him too differently. There are a few times that I am bothered by my

mother's comments. I know she doesn't mean anything by them. But one thing

particular that she says is " Tim likes to watch the Hunchback of Notre Dame

because he identifies with Quasi Moto because he is different " That drives me

nuts! I asked her why it was that Garrett and everyone else in the world liked

that movie! She, of course, didn't have an answer for that.

Thanks for your comments

Kristy

and wrote:

Kristy,

We found out when Aidan was about to turn 2 and he still wasn't talking very

well. At his 24 month check-up our Pediatrician started looking at his hands,

ears, etc. without telling us what he was looking for, and then said he was

going to run some tests to check for Down Syndrome. It was like a bomb dropped!

We had no inkling. A couple weeks later when we got the dx of MDS we didn't

tell anyone so we could take time to process (and cry, and worry, and cry some

more). Then we looked up everything we could online since the Ped. said he

basically knew nothing about MDS and " good luck! " With all the information we

sat down and wrote a letter explaining the genetic/scientific stuff and

basically said we would appreciate everyone treating him the same as they had

been and thanking them for their support. I think I approached it thinking

everyone else would be just as surprised as we were so we wanted to make the

news not so much of a blow as it was to us. However, several of our

family members made comments about how they knew all along and were just waiting

for us to figure it out. That really hurt to hear that people had been talking

about our child, speculating and thinking things behind our backs. Since then,

people act like they're treating him the same, but we still get ignorant

comments about how slow he is or stereotypes about how they feel he's going to

grow up. They all say they're really supportive, but it's clear that no matter

what we do, they'll always treat him as " special " or just different, which is

dissappointing, but part of life I guess. As long as WE give him all the

benefit of the doubt, set his expectations high and never treat him like he

can't accomplish anything, that's all that matters.

stephanie

Aidan 3 1/2 MDS, a 2, 5 weeks

Kristy Colvin wrote:

Hi Everyone,

I am working on writing some new documents to include in our member

information packet. One paper I am writing concerns how people tell their

friends, family and children their new baby or older child has MDS. I know that

this can be a difficult thing to do and I think mainly it is because we want

everyone to see our children the way we see them; just wonderful and beautiful

children!

So, what I am looking for is comments on how you told your friends, family and

children and how they reacted and how you reacted to their reaction.

Thanks

Kristy

[Guest guest]

Hi Kristy,

I told everyone when was born, that he might have Ds. And then I

told everyone five weeks later when his test came back and confirmed his

diagnosis. I did not find out that was mosaic Ds until he was 14

months old.

mom to 10, 8, 5 and 3 MDs

How did you tell your family?

> Hi Everyone,

> I am working on writing some new documents to include in our member

> information packet. One paper I am writing concerns how people tell their

> friends, family and children their new baby or older child has MDS. I know

> that this can be a difficult thing to do and I think mainly it is because

> we want everyone to see our children the way we see them; just wonderful

> and beautiful children!

> So, what I am looking for is comments on how you told your friends,

> family and children and how they reacted and how you reacted to their

> reaction.

> Thanks

> Kristy

>

>

>

[Guest guest]

My son is my second child {9 1/2 months} , therefore my husband and I

decided that the second time around we would do it on our own and then invite

our family to meet our new baby boy. However, things did not go quite as we

planned.

My husband and I found out my son might be a candidate for DS hours after

my delivery. I can honestly say that I felt like my life had been sucked out

of me; I was torn apart. I lost all train of thought as the doctor was

explaining abot further tests, all I could hear was down syndrome.

Unfortunately, all types of images came to my mind and I could not bear to

think of what the future would hold.

Later, after hours of crying, and wondering -my husband called my mom , he

felt I could use her, although I have to add my husband shared my pain, andt he

was great.He was very positive, and kept putting things in Gods hands, telling

me over and over " he is our son, that is all that matters. " When my mom got to

the hospital she saw how devestated I was, and my husband gave her the news. I

can recall my mom saying " You have a son, " she felt that we would overcome

this obstacle together (she is my babysitter). My sisters were great, and

loved him from the instant they layed eyes on him.

A week later I learned he had MDS. My sister quickly researched and gave me

the info. Today we are doing great, God has made all things possible for us.

We are surrounded with people who help my son, and God's strength. My daughter

who is 7 does not know, I don't feel she needs to know at this point. I want

her to treat my son the same, and don't want her to hold back. I have only told

my immediate family and one friend. I don't feel anybody else needs to know.

How will them knowing ,help my son? My family used to talk about mds at the

beginning always showing support, and treating him the same. My husbands family

has never talked about mds to me, and unfortunately do not come around to see

himthat often, it hurts but oh well. I am very thankful that my family is very

supportive, and give ear when needed.

Kristy Colvin wrote:

Hi Everyone,

I am working on writing some new documents to include in our member

information packet. One paper I am writing concerns how people tell their

friends, family and children their new baby or older child has MDS. I know that

this can be a difficult thing to do and I think mainly it is because we want

everyone to see our children the way we see them; just wonderful and beautiful

children!

So, what I am looking for is comments on how you told your friends, family and

children and how they reacted and how you reacted to their reaction.

Thanks

Kristy