Re: Why focus on %

[Guest guest]

it's always interesting, how when we read messages from others, how we can

all interpret them differently. I have never personally read a message, and

felt that anyone was trying to be " more normal " or avoid the DS in any way.

::shrug::

I think it's important to say MDS though... because people out there often

need an education. I do sometimes say to people that has " Down

Syndrome " ..............but it ALWAYS has led into a definition of MDS because

the

first thing people say is... " whaaat? really??? but he doesn't look THAT

down's...wow, I didn't see it "

I think often the need to differentiate also comes from how we are sometimes

treated by the DS community. Unfortunately, I've had the experience of

being told by a DS group I joined when was a toddler, that he wasn't

" down's enough " for the group. It must have been discussed without me at some

point, because I began to be treated a little differently....and was even told

by

a parent of child with DS that my son didn't have REAL ds. ????

Sooo..after those experiences, i thought it was important to 'be loud and

proud' and always have the time to define what MDS is, and educate others so

that DS...MDS...and MTDS can all be UNIFIED................do you know there are

DOCTORS out there who don't even know the difference???

I really don't believe anyone here is reaching for the " normal " part of

their kid, and not embracing the DS part....I've never even thought about it

that

way honestly... well I confess I have not been able to keep up with all the

posts in the last couple months, as we moved.... so I don't know if anything

particular was said, but for ME, and everyone I've known in the group....our

children are just our children! Loved... worried about...doted on....

expectations...and then wham, something in LIFE reminds us that they have down

syndrome now and then!

Angel

Mom to 14 MDS/DS

and 5 sibs

************************************** AOL now offers free email to everyone.

Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

Hi

I am not sure what you would be refering to. There are significant differences

in MDS compared to Ds and that is why we have this support group and

organization to talk specifically about our children with MDS. It does not, in

any way, mean that we would not love our children any more or less if they had

100% trisomy 21 cells. But, since they don't have Down syndrome that is why we

do not say they have Down syndrome.

Because of the vast variations in delays concerning MDS we do tend to wonder

if the % does matter. We are currently working with researchers to discover

these differences and so far what we have found is that depending on the % and

where the cells are located in the body determines the delays (in most cases) of

the person.

My son has a very low percent of affected cells, but he is very far from

" normal " . (whatever " normal " is) And, I think that most parents here treat their

children like any other typical child and that is why they thrive the way they

do!

I hope that this helps you better understand mosaic Down syndrome. If I can

help you with any other information concerning MDS, then please do not hesitate

to contact me and I will be happy to give you the information we have.

Kristy

wrote:

I have not been with this group very long. My son has MDS. When

people ask what he has I just say DS. I don't feel I have to say he

has MDS. I feel that my child is very special no matter what. I feel

secure with myself and my child that I don't have to say he has MDS.

For what? So that someone else may feel part of him is normal? Why

does everyone in this group focus on the % and not the child? I have

been having a hard time with this. If your child had DS would you

love them less? It seems to be very important for all of you to say

part of your child is normal. Why focus on what is so called normal.

I treat my son with MDS just like my other 4 children. He is very

loving and we would never change him. I think that all of you need to

sit back and look at what you are really doing. Now if you are a

parent that does not focus on that, I am not directing this letter to

you, but if you are that parent I am speaking very loudly to you.

Remember that your child is special no matter what % is normal.

[Guest guest]

Interesting topic of discussion...this is why I recently joined this group. In

Drew's almost 3 years of life, I have never said that she did NOT have Down

Syndrome. Kristy, is it correct to say that our children have Mosaicism?? I

just always say DS which does, like Angel said, lead to the discussion of MDS

because she does not have pronounced characteristics. When we first joined our

local DS group, we were shunned a bit it seemed because everyone knew about MDS

and wished their child was one of us. I knew very little at that time and was

really joining the group to learn more but they kid of treated me differently.

Now, I am very involved and have never lead on to the fact that Drew is any

different. We are blessed that Drew has not had any medical complications and

has been pretty right on with milestones, if not a bit delayed but she is only 2

1/2. I am glad to join in to become better informed of what lies ahead as far

as research goes. We are just blessed to have a healthy, happy daughter who has

brought us more joy than we could have ever imagined. We are trying to come to

the conference this summer too! Glad to be a part and I value everyone's

opinion.

Leslee, mom to Drew (2 1/2, MDS) and Darby (6)

Re: Why focus on %

it's always interesting, how when we read messages from others, how we can

all interpret them differently. I have never personally read a message, and

felt that anyone was trying to be " more normal " or avoid the DS in any way.

::shrug::

I think it's important to say MDS though... because people out there often

need an education. I do sometimes say to people that has " Down

Syndrome " ..............but it ALWAYS has led into a definition of MDS because

the

first thing people say is... " whaaat? really??? but he doesn't look THAT

down's...wow, I didn't see it "

I think often the need to differentiate also comes from how we are sometimes

treated by the DS community. Unfortunately, I've had the experience of

being told by a DS group I joined when was a toddler, that he wasn't

" down's enough " for the group. It must have been discussed without me at some

point, because I began to be treated a little differently....and was even told

by

a parent of child with DS that my son didn't have REAL ds. ????

Sooo..after those experiences, i thought it was important to 'be loud and

proud' and always have the time to define what MDS is, and educate others so

that DS...MDS...and MTDS can all be UNIFIED................do you know there

are

DOCTORS out there who don't even know the difference???

I really don't believe anyone here is reaching for the " normal " part of

their kid, and not embracing the DS part....I've never even thought about it

that

way honestly... well I confess I have not been able to keep up with all the

posts in the last couple months, as we moved.... so I don't know if anything

particular was said, but for ME, and everyone I've known in the group....our

children are just our children! Loved... worried about...doted on....

expectations...and then wham, something in LIFE reminds us that they have down

syndrome now and then!

Angel

Mom to 14 MDS/DS

and 5 sibs

************************************** AOL now offers free email to everyone.

Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

My child is so NORMAL I almost don't belong in this

group! I often don't post a response because we don't

have BIG problems and I don't even know the percentage

of cells involved, since we just treat every situation

as it appears. Our diagnosis was 12 years ago through

amnio and right before my preterm labor started. It

was important at that time to prepare for any

developmental delays already present in a premature

baby. If not for the amnio and chromosomal analysis

at birth, NO ONE, including doctors would know of the

MDS. My daughter is in a regular classroom and is 1st

in her 5th grade reading class with a 98 average.

Science is her lowest grade with an 81. Do I say this

to prove how NORMAL she is? No, she also has ADHD,

and takes daily medication. We see her pediatrician

more often now for prescription refills than when we

were going for Well Baby checkups. She was in an

Easter Seals preschool for early intervention with PT,

OT, and SLP monitors, but she was considered NORMAL by

developmental standards. I think a diagnosis of MDS,

DS...whatever, was important so we could be aware of

the NEED for PT when she was nine months old, and saw

a neuropsychcologist for the Attention Deficit in the

2nd grade to be sure it was not related to MDS. When

she started gymnastics, we had a cervical xray to make

sure of no A-A Instability. I was an infertility

patient and I pray that when she is ready to have a

family, that there will be some way of isolating

NORMAL eggs so she can have a NORMAL child. And what

about the new vocabulary we have-abbreviations for

everything, awareness of developmental milestones, a

worldwide network of other parents who have specific

concerns related to MDS, like the fact children with

MDS have more speech delays than DS Trisomy 21, that %

of cells is not necessarily an indicator of IQ, since

it depends on when the cells divided and what cells

are affected. So, sorry about my soapbox, but 12

years ago all that was known about Mosaicism was that

it was rare, and is " variable " . At least now we have

others to talk with, share stories and cry with, and

gain advice from. I used to go to a Down Syndrome

support group, but felt like I was the 'token' MDS

parent and didn't have the " real " problems associated

with DS. I consider myself the parent of a NORMAL

child who just happens to have two cell lines: one

with 46 chromosomes, and one with 47 chromosomes.

When that 47th chromosome acts up, we focus on it and

the rest of the time we treat her like any child

deserves to be treated-SPECIAL. Judy

[Guest guest]

When my daughter was diagnosed and the doctor said that 70% of her cells are

normal, I thought great she will function higher then most. Well as the years

have gone by, she is almost 13yrs I have found that the percentage doesn't mean

a thing. She has delays alot in academics but she excels in other things which

I feel are more important. She does gymnastics with special olympics and she

does well but there are other kids down syndrome, autistic etc that do better.

Just like " normal " kids everyone has there own strengths and weaknesses.

I usually refer to her as down syndrome if it comes up, usually it doesn't.

Sometimes I explain the Mosaic but I don't usually feel it is necessary. My

opinion is that mosiac is a form of down syndrome. I focus on her and her needs

and we just go about our lives one day at a time. Through the special olympics

I see alot of different disabilities and I am amazed at what they can do.

So I guess the percentage does not matter to me because I see down syndrome kids

that function at some things better then my daughter and some that don't.

Jeanne

Why focus on %

I have not been with this group very long. My son has MDS. When

people ask what he has I just say DS. I don't feel I have to say he

has MDS. I feel that my child is very special no matter what. I feel

secure with myself and my child that I don't have to say he has MDS.

For what? So that someone else may feel part of him is normal? Why

does everyone in this group focus on the % and not the child? I have

been having a hard time with this. If your child had DS would you

love them less? It seems to be very important for all of you to say

part of your child is normal. Why focus on what is so called normal.

I treat my son with MDS just like my other 4 children. He is very

loving and we would never change him. I think that all of you need to

sit back and look at what you are really doing. Now if you are a

parent that does not focus on that, I am not directing this letter to

you, but if you are that parent I am speaking very loudly to you.

Remember that your child is special no matter what % is normal.

________________________________________________________________________

AOL now offers free email to everyone. Find out more about what's free from AOL

at AOL.com.

[Guest guest]

very well said Judy.

Re: Why focus on %

My child is so NORMAL I almost don't belong in this

group! I often don't post a response because we don't

have BIG problems and I don't even know the percentage

of cells involved, since we just treat every situation

as it appears. Our diagnosis was 12 years ago through

amnio and right before my preterm labor started. It

was important at that time to prepare for any

developmental delays already present in a premature

baby. If not for the amnio and chromosomal analysis

at birth, NO ONE, including doctors would know of the

MDS. My daughter is in a regular classroom and is 1st

in her 5th grade reading class with a 98 average.

Science is her lowest grade with an 81. Do I say this

to prove how NORMAL she is? No, she also has ADHD,

and takes daily medication. We see her pediatrician

more often now for prescription refills than when we

were going for Well Baby checkups. She was in an

Easter Seals preschool for early intervention with PT,

OT, and SLP monitors, but she was considered NORMAL by

developmental standards. I think a diagnosis of MDS,

DS...whatever, was important so we could be aware of

the NEED for PT when she was nine months old, and saw

a neuropsychcologist for the Attention Deficit in the

2nd grade to be sure it was not related to MDS. When

she started gymnastics, we had a cervical xray to make

sure of no A-A Instability. I was an infertility

patient and I pray that when she is ready to have a

family, that there will be some way of isolating

NORMAL eggs so she can have a NORMAL child. And what

about the new vocabulary we have-abbreviations for

everything, awareness of developmental milestones, a

worldwide network of other parents who have specific

concerns related to MDS, like the fact children with

MDS have more speech delays than DS Trisomy 21, that %

of cells is not necessarily an indicator of IQ, since

it depends on when the cells divided and what cells

are affected. So, sorry about my soapbox, but 12

years ago all that was known about Mosaicism was that

it was rare, and is " variable " . At least now we have

others to talk with, share stories and cry with, and

gain advice from. I used to go to a Down Syndrome

support group, but felt like I was the 'token' MDS

parent and didn't have the " real " problems associated

with DS. I consider myself the parent of a NORMAL

child who just happens to have two cell lines: one

with 46 chromosomes, and one with 47 chromosomes.

When that 47th chromosome acts up, we focus on it and

the rest of the time we treat her like any child

deserves to be treated-SPECIAL. Judy

[Guest guest]

This is an interesting line of discussion because there are many good points I

am reminded of. I have often seen (through these threads) discussions about

parents who cannot get the right help because of no diagnosis and not " fitting

into " the DS mold well enough to merit therapy or educational needs. There's

also often the discussion about explaining to people about the " he doesn't look

like he has Down syndrome! " I agree with that we shouldn't treat our

children differently no matter what challenges they have in life, but like

Angel, I haven't kept up with the posts lately either so there may have been

something I missed that she's referring to. Pretty much, I started out not

wanting people to label my son as anything and I felt uncomfortable the

attention and explanation of MDS caused, but after trial and error I've decided

that for me, I bring up the MDS now because 1) people always say he doesn't have

the facial features of DS and I end up explaining it

anyway, 2) to be sure to get the educational/therapy needs to fit his diagnosis

and 3) partially to raise awareness about MDS! I figure the more times I

mention the word Mosaic that's one more person who will tell one more person

that will lead to one more person being diagnosed earlier on without spending

years trying to get help without the right places to look.

Mom to Aidan (4) MDS, a (3), (1)

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

TV dinner still cooling?

Check out " Tonight's Picks " on Yahoo! TV.

[Guest guest]

Hi Leslee

It would be correct to say that your daughter has mosaic Down syndrome.

Mosaicism is really a medical term and refers to any kind of chromosome disorder

that has 2 cells lines.

I think it is important to tell others that it is mosaic Down syndrome in

order to spread awareness. If people don't talk about it, then no one will ever

know about it. Also, if no one ever talks about it, then the misconceptions of

MDS will remain and families will continue to be shunned by the local Down

syndrome groups because the children do not have the physical characteristics or

" enough " delays to be " part of the club " .

If there was more awareness about mosaic Down syndrome, then International

Mosaic Down Syndrome Association probably would have never of had to been

formed! (not that that is a bad thing! lol)

I know a lot of families who have children with Down syndrome feel a lot of

varying emotions towards families whose children have MDS. This is because of

the misconceptions of MDS. There have been times where I honestly wished that

Tim had 100% of the trisomy 21 cells so that I didn't have to explain his

behaviors all the time. If he looked like he had Down syndrome, then maybe he

wouldn't have been picked on as much as a kid. If he had a lower IQ, then maybe

teachers wouldn't have treated him so badly in school. (they would say things

like " He is so smart, why can't he act right? " ) There are a lot of plusses and

minus' to having MDS as opposed to Ds. But, you can NOT measure one disability

to another. (A lot of people tend to do this) Many families, especially those

who have children with Ds feel, and often say out loud, that families with

children with MDS are " better off " because they only have a % of the cells. That

just isn't true. A disability is a disability. No

matter what, it isn't something we have chosen for our children. It does

strengthen us often and makes us different people. And, like Angel said,

sometimes, (especially when you think things are going really well) something

will hit you smack in the face to remind you of those extra chromsomes!

I do hope that you come to our conference Leslee! We all will have a great

time and we will all learn a lot! One thing we are doing very special this year

is inviting all the families who have children with Down syndrome. Even though

our children have varying degrees of delays (and sometimes no delays at all)

most of the delays (outside of the different speech problems) are the same

" kind " of delays and so everyone will benefit from the conference and hopefully,

we will be able to educate the families whose children have Down syndrome, so

they do not think that WE think we are " better off "

Kristy

Leslee Boswell wrote:

Interesting topic of discussion...this is why I recently joined this

group. In Drew's almost 3 years of life, I have never said that she did NOT have

Down Syndrome. Kristy, is it correct to say that our children have Mosaicism?? I

just always say DS which does, like Angel said, lead to the discussion of MDS

because she does not have pronounced characteristics. When we first joined our

local DS group, we were shunned a bit it seemed because everyone knew about MDS

and wished their child was one of us. I knew very little at that time and was

really joining the group to learn more but they kid of treated me differently.

Now, I am very involved and have never lead on to the fact that Drew is any

different. We are blessed that Drew has not had any medical complications and

has been pretty right on with milestones, if not a bit delayed but she is only 2

1/2. I am glad to join in to become better informed of what lies ahead as far as

research goes. We are just blessed to

have a healthy, happy daughter who has brought us more joy than we could have

ever imagined. We are trying to come to the conference this summer too! Glad to

be a part and I value everyone's opinion.

Leslee, mom to Drew (2 1/2, MDS) and Darby (6)

Re: Why focus on %

it's always interesting, how when we read messages from others, how we can

all interpret them differently. I have never personally read a message, and

felt that anyone was trying to be " more normal " or avoid the DS in any way.

::shrug::

I think it's important to say MDS though... because people out there often

need an education. I do sometimes say to people that has " Down

Syndrome " ..............but it ALWAYS has led into a definition of MDS because

the

first thing people say is... " whaaat? really??? but he doesn't look THAT

down's...wow, I didn't see it "

I think often the need to differentiate also comes from how we are sometimes

treated by the DS community. Unfortunately, I've had the experience of

being told by a DS group I joined when was a toddler, that he wasn't

" down's enough " for the group. It must have been discussed without me at some

point, because I began to be treated a little differently....and was even told

by

a parent of child with DS that my son didn't have REAL ds. ????

Sooo..after those experiences, i thought it was important to 'be loud and

proud' and always have the time to define what MDS is, and educate others so

that DS...MDS...and MTDS can all be UNIFIED................do you know there are

DOCTORS out there who don't even know the difference???

I really don't believe anyone here is reaching for the " normal " part of

their kid, and not embracing the DS part....I've never even thought about it

that

way honestly... well I confess I have not been able to keep up with all the

posts in the last couple months, as we moved.... so I don't know if anything

particular was said, but for ME, and everyone I've known in the group....our

children are just our children! Loved... worried about...doted on....

expectations...and then wham, something in LIFE reminds us that they have down

syndrome now and then!

Angel

Mom to 14 MDS/DS

and 5 sibs

************************************** AOL now offers free email to everyone.

Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

I agree on everything said. To expound on

my earlier post, we have a Section 504 and IEP (more

vocabulary again) in place so that schoolwork can be

modified as needed, i.e., she sits at the front of the

classroom and sometimes is allowed more time to

complete work. After explaining MDS and its

variables, almost all of her teachers and counselors

have wondered if MDS is not more common, but is not

diagnosed without some reason to do chromosomal

analysis. She has no DS features, has no medical

problems (except ADHD), had only one ear infection as

a baby (breastfed), drank out of a cup as soon as she

sat up at six months (again, breastfed and did not

like bottles), good muscle tone... only slight delays

in walking and speech, but still within normal

range-it's just that because of the MDS we knew when

therapy was needed to bring her up to speed. I

breastfed (and worked fulltime) until she was 12

months old because breastfeeding is supposed to add

ten points to a child's IQ and with either MDS or DS

or any type of MR, we take all the IQ points we can

get. We do not wear a billboard that says " my child

has MDS " , because we have not wanted other people to

place a label and limits on what she is capable of.

Close friends, teachers, and family all know, of

course, but it is not something we dwell on as MDS is

not all that she is as a person. When I was 18 weeks

pregnant and got the MDS diagnosis from amnio, we

consulted a geneticist who gave us two choices:

consider our " option " which was a polite way of saying

abortion. Our second choice was to have our daughter

who would, and I quote verbatim: " never live on her

own, would live in a group home and would never go to

college " . At the time we had a 13 year old daughter

and 10 year old son and I would not place limits on

what they could do, and especially on a child not even

born! We had a fetal echocardiogram (normal) and

Level II ultrasound (normal). Our pediatrician was

present during my emergency c-section, because of the

MDS and prematurity, we did not know if she would have

to go to Neonatology. Because of a summer birthday,

MDS, and an excellent Easter Seals preschool, we

stayed in preschool another year and started

kindergarten right after she turned six. I think that

because of the diagnosis of MDS, we are MORE aware of

what is 'normal' and 'average' and are trying to do

everything possible to help her grow into a

responsible adult. Oh, I forgot! That's what we want

for all of our kids! Of course, we could change our

minds when she starts driving. Judy

--- and

wrote:

> This is an interesting line of discussion because

> there are many good points I am reminded of. I have

> often seen (through these threads) discussions about

> parents who cannot get the right help because of no

> diagnosis and not " fitting into " the DS mold well

> enough to merit therapy or educational needs.

> There's also often the discussion about explaining

> to people about the " he doesn't look like he has

> Down syndrome! " I agree with that we

> shouldn't treat our children differently no matter

> what challenges they have in life, but like Angel, I

> haven't kept up with the posts lately either so

> there may have been something I missed that she's

> referring to. Pretty much, I started out not

> wanting people to label my son as anything and I

> felt uncomfortable the attention and explanation of

> MDS caused, but after trial and error I've decided

> that for me, I bring up the MDS now because 1)

> people always say he doesn't have the facial

> features of DS and I end up explaining it

> anyway, 2) to be sure to get the

> educational/therapy needs to fit his diagnosis and

> 3) partially to raise awareness about MDS! I figure

> the more times I mention the word Mosaic that's one

> more person who will tell one more person that will

> lead to one more person being diagnosed earlier on

> without spending years trying to get help without

> the right places to look.

>

>

> Mom to Aidan (4) MDS, a (3), (1)

>

>

>

>

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

> TV dinner still cooling?

> Check out " Tonight's Picks " on Yahoo! TV.

>

> [Non-text portions of this message have been

> removed]

>

>