Re: UpsNDowns List

[Guest guest]

Hello!

I just wanted everyone to know that if they go to our

web site www.mosaicdownsyndrome.com they can go to the

message board and there is a place to post your

questions where the doctors that are doing the study

on mosaic down syndrome can answer some of your

medical concerns. Because mosaic down syndrome is so

rare and different from ds, some of your questions may

not have an answer, but it is worth the try. And

, welcome to our group! You will find lots of

valuable information here as well as great support! If

you have any questions or concerns, please don't

hesitate to ask.

Kristy Colvin

President, IMDSA

--- lauralk38 wrote:

> Hello all - my name is , and I have a 10 year

> old boy with Down

> syndrome, mosaic style. He is a great kid - he had a

> lot of health

> problems early in life that affected his

> development, but is now very

> healthy and doing well. He is fully included in a

> 4th grade class,

> plays town soccer, participates in Special Olympics

> and takes piano

> and xylophone lessons. He is a computer nut....and,

> ala

> your 'typical computer nerd', can be somewhat

> antisocial at times!!

> Ah, but can't we all?!??!

>

> I have been a " lurker " here for about 2 weeks.

> During that time,

> I've noticed that many of you have questions

> relating to Down

> syndrome (ie. autism dual diagnosis, celiac disease,

> ADHD dual

> diagnosis, yoga, and even bottle vs. sippy cup) that

> are common to

> ALL kids with DS, not just kids of the mosaic

> variety. Since this

> list is much smaller, you are, by default, getting

> responses from a

> smaller group of " experiences " . In any event, I

> just wanted to

> suggest that, if you don't already belong, that you

> look into joining

> the " UpsNDowns " yahoo group. It is a " general DS "

> list with around

> 600 or 700 members, including some parents who also

> happen to be

> doctors, lawyers, therapists, teachers, etc. If you

> don't want to

> get tons of mail, you can just be put on " digest " or

> the one where

> you can just go and read the mail manually. In that

> way, you will

> probably get more comprehensive answers to questions

> like the ones I

> noted above......questions where it doesn't matter

> what kind of DS

> your kid has.

>

> Just thought I'd put in my 2 cents.

>

>

>

>

> Won't you please consider adding your personal story

> on the MDS website today?

> http://www.mosaicdownsyndrome.com

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

> MDS MESSAGE BOARD -

> http://www.mosaicdownsyndrome.com/discus

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

>

[Guest guest]

> Because mosaic down syndrome is so

> rare and different from ds, some of your questions may

> not have an answer, but it is worth the try.

Kristy - I'd agree that the mosaic form of DS is rare........but I

heartily disagree that it is very different from the other forms of

DS for a great number of the people that have it. I have personally

never heard that people with mosaic DS have any different health

issues than people with " garden variety " DS.....but maybe I'll go to

the website you mention and ask that question. I think that it would

behoove anyone that has a child with mosaic DS to be as knowledgeable

as they can be about " garden variety " DS - you are truly missing out

on a lot of support or information if you somehow think that your

child is different from (or, <<gasp!>>, better than) all those others

out there with some other form of DS.

Just my 2 cents - I will certainly follow up on the website you

mentioned - thank you for sending it.

[Guest guest]

, When our son Jonas was born, there was no way to look at him and tell he had Down's Syndrome. When we found out, it was a total shock. It never crossed our minds in a million years for the first 10 days of his life until his AV Canal Defect of the heart (two holes) was discovered. When we were told at that time, they knew he had Down's Syndrome because of the heart defect and because then they looked hard for other signs. He has the straight creases on both hands and he has a slightly larger than normal space between his big toe and the others on his foot. We were put into contact right away with a social worker ( my own degree is in this field) and she had a son with full Down's Syndrome. After meeting with her and reading everything we were given we had a notion of what we could expect, knowing that every child with any disability is different from their peers. However, there are also some things that are also very common among children with DS, or it would not be called a syndrome. I am certain that after being in this group for a year or so, I have never heard a parent who seemed haughty or "proud" (in the negative sense) that their child has MDS rather than DS. When Bob and I found out that Jonas had "30% effected cells and MDS" rather than full DS, the doctors themselves told us that this result changed nothing really except that we may have the good fortune to eventually find out that he will be able to be higher functioning than if every single cell in his body was effected. It also helped them (and us) to understand why the diagnosis took 10 days to reveal itself. We waited for some days beyond the 10 days before the tests were back to tell us of the MDS. In that time, we had read so much about Down's Syndrome that our heads were swimming! I was getting very depressed because I did not feel like I was reading or speaking with anyone who was experiencing just what we were. We did not have a computer, nor could we afford one at that time. Because my bother and sister in law in Texas found this very group and read all the personal stories and saw what a great support it could be for us, they bought this computer and had it sent to us as a gift! As soon as I read the stories and started to get to know these folks here, I finally put the books away that had been dragging me down and began to celebrate (NOT BRAG, AS IN, "I'M BETTER THAN YOU ARE!") my new miracle son. I am not an unintelligent woman. I have read more information about Down's Syndrome than I ever dreamed of reading in my life. What I needed and wanted was to find someone who could give me some information about their child who had this rare form MDS. There is a distinction for the great majority of these children. My son has a heart defect common to any child with any form of DS. He however, looks exactly like his brother did at the same age who is perfectly normal and he resembles myself and my husband enormously. Nobody could guess he has MDS unless we choose to tell them. I am not aware that there are very many children with 100% DS who do not carry enough physical characteristics, that you can tell in a minute that the child has Down's Syndrome. I have a cousin who has a daughter with full Down Syndrome and at the family reunion this year, I had the chance to sit and speak with her about our Jonas, and about her Stacie. We did not even feel like we were talking about the same disorder at all. Her daughter did not have the medical ailments, but is very mentally impaired and has many communication problems. Her daughter is 18 years old now. She does not speak well and is beautiful even though she pulls her hair out of her head due to a nervous habit. We love her, she is a dear. My son is NOT BETTER than she is, but he is most definitely different from her in many ways. He is ready to walk any day at 16 months and he was 2 months premature! He speaks three words and is working on more. He is starting to put together a puzzle we work on together everyday. He is smart and beautiful and sometimes I get on hear and rejoice with great friends because I am so happy! I do not come here to strut around like I am better than anyone. I know of various group members who are members of other Down's Syndrome groups on the Web. i.e.: Christian DS group, DS of America group, Australian group etc. I stick to this one group because it is great for me, it makes me happy, and it is about all I have time to really keep up with. Sometimes (much of the time) I need to forget the diagnosis and just be Mom and wife. This group is enough for me and I thank God that I have all these great friends to help me in times of joy and heartbreak. If you are finding that it is best for you to get a bigger variety of info, I applaud you for that. I get overwhelmed with too much of it and then I am not the best Mom that I can be, nor the happiest wife and friend to my Dear Ones that I can be. Who could have imagined that there was so much information out here on the web for folks facing any manner of physical or mental difficulty? We can all be thankful for that! Have a great day , and truly, many blessings to you and your family. Sincerely, Barb Martz Mom to Jonas (MDS) 16 months & 6 years Re: UpsNDowns List > Because mosaic down syndrome is so> rare and different from ds, some of your questions may> not have an answer, but it is worth the try.Kristy - I'd agree that the mosaic form of DS is rare........but Iheartily disagree that it is very different from the other forms ofDS for a great number of the people that have it. I have personallynever heard that people with mosaic DS have any different healthissues than people with "garden variety" DS.....but maybe I'll go tothe website you mention and ask that question. I think that it wouldbehoove anyone that has a child with mosaic DS to be as knowledgeableas they can be about "garden variety" DS - you are truly missing outon a lot of support or information if you somehow think that yourchild is different from (or, <<gasp!>>, better than) all those othersout there with some other form of DS.Just my 2 cents - I will certainly follow up on the website youmentioned - thank you for sending it.

[Guest guest]

Hi :

Well, it seems that you have heard from many of the parents with younger

children with MDS, so I'd like to add my input as the parent of an older child

with MDS. I really wish I knew as much about MDS as I do now when my daughter

was little. is now 17 years old and a sophomore in high school. All

through her school years she was treated just like all the other DS children and

has only been taught through the self contained special ed classes with a few

mainstream, PE, Music, maybe Art and today in high school, she is on the Pep

Squad. With what I have learned from this website and all these wonderful

people, is that if the educators, and maybe even as far back as her Early

Invention teachers, had known that she was " different " maybe they would have

taught her different. We are now finding out that she still has the potential

to learn, even though, at the high school level, the concentration is only on

teaching life skills, no more academics. She was at a second grade reading

level at the end of last year. We began working with her and I got a tutor for

over the summer and she is now reading at a fourth grade level and continues to

improve. I really wish I could start over with her schooling and press for more

inclusion in the regular classrooms. I think it's important to identify these

kids as having MDS because I think it will prevent them from being classified

with all the other DS ways of doing things. has many characteristics

of other DS people, but she also has many characteristics that don't fit. I

think when it comes to education, they need to have a custom package for those

DS kids that are different, good or bad. If you were to look at , she

looks just like any other person with DS. She didn't when she was little, but

as she has gotten older, her features are more DS and her abilities are DS.

However, there are many other areas that people are amazed at, until I explain

that she is MDS, then it makes more sense.

So to put it all in a nutshell, I think it is real important to segragate MDS

children and treat them differently. In the long run, it only benefits them.

Terri Blades, 17 yrs., MDS and , 9 1/2

[Guest guest]

In response to :

Barbara, once again you said it so well! - I don't think any of us feel

our children are better than anyone! We are just seeking the best possible fit

for support. My son was diagnosed via amnio-

11% MDS - If it had not been for this amnio we would have never suspected a

thing- has no physical characteristics - he just turned 7 months old and

is cruising the furniture (sat up at 4/5 months, crawled at 5 months) He is

verbalizing and socializing right on schedule. The Early Intervention team are

amazed - because they too have little to no experience with MDS-and would never

expect any of the above from a child with DS (their words not mine) I am not

bragging about what can do - I use these as illustrations of how different

children CAN BE with MDS. Like Barbara I got caught up in all the DS books and

for some that may resemble their MDS child more- but for me it does not. My

husband and I celebrate 's accomplishments each and every day, and we are

not ashamed of the fact that he has DS, nor do we think he is better than others

with full DS. He is different.

I hope you have an opportunity to visit our website, and visit photoisland. God

Bless - Ellen Kugel

[Guest guest]

Barb,

Thank you. I sincerely doubt I could have responded or

commented half as eloquently as you did.

__________________________________________________

[Guest guest]

my imput is this.....

go where you feel comfortable , take whatever information is available to you and process it in the best way for you and your child.... but never forget that downs sydrome, mds, or any other diability your child is a individual, it isnt a matter of putting them in a catergory, or itemizing their strenghts or weaknesses... here we have a common bond that WE need has the parents of special kids to enable them to meet their full potential, we are the number one teachers in their lives, we love them unconditionally like no other person can love them , no matter what their differences. they are unique and beautiful people.

I have seen where things have grown in the favor of children with disabilites greatly in the last twenty years or so, no longer are they institutionalized because they are not acceptable to society, today you see young adults working amongst their peers even though they are different , therapies and education is so much better and offers so much more to our kids today..... things are changing for our kids because of us parents , aunts , uncles, whoever.... seeing the strength in our kids looking beyond the down syndrome the mds the whatever and seeing the real people and helping them to emerge and be better adults to grow into a world that is becoming more accepting.... so it isnt like any one is catorgizing the children, or saying my child is better off because they have the lesser form of down syndrome..... we are simply bonding together and sharing our children with others who have a common bond with us.... togehter we are gathering the strength and information needed to continue to provide our children with a better future.... and we are also providing our children with the knowledge that there are other children with similarities to them , and giving them the chance to form friendships amongst themselfs .... because everyone needs a friend that understands them .... and who can understand better then someone who has walked the same path as yourself??

Because we all have a common bond, we can grow strong from one another and pass that strength onto our children .... not teach them they are better then others because they have a "lesser form of down syndrome" but to teach them that they are equal to everyone.

debbi.

mom to kaitee.... who is just kaitee

[Guest guest]

My two cents with this is that no child should be pigeon holed into any catagory of learning. Even children with DS have a wide range of abilities. Every child should be expected to maximize their potential. Never settle, never give up and never give in.

Carol

>From: razorsharp5000@... >Reply-To: MosaicDS >To:

>Subject: Re: UpsNDowns List >Date: Thu, 07 Mar 2002 12:27:55 EST > >Hi : > >Well, it seems that you have heard from many of the parents with younger children with MDS, so I'd like to add my input as the parent of an older child with MDS. I really wish I knew as much about MDS as I do now when my daughter was little. is now 17 years old and a sophomore in high school. All through her school years she was treated just like all the other DS children and has only been taught through the self contained special ed classes with a few mainstream, PE, Music, maybe Art and today in high school, she is on the Pep Squad. With what I have learned from this website and all these wonderful people, is that if the educators, and maybe even as far back as her Early Invention teachers, had known that she was "different" maybe they would have taught her different. We are now finding out that she still has the potential to learn, even though, at the high school level, the concentration is only on teaching life skills, no more academics. She was at a second grade reading level at the end of last year. We began working with her and I got a tutor for over the summer and she is now reading at a fourth grade level and continues to improve. I really wish I could start over with her schooling and press for more inclusion in the regular classrooms. I think it's important to identify these kids as having MDS because I think it will prevent them from being classified with all the other DS ways of doing things. has many characteristics of other DS people, but she also has many characteristics that don't fit. I think when it comes to education, they need to have a custom package for those DS kids that are different, good or bad. If you were to look at , she looks just like any other person with DS. She didn't when she was little, but as she has gotten older, her features are more DS and her abilities are DS. However, there are many other areas that people are amazed at, until I explain that she is MDS, then it makes more sense. > >So to put it all in a nutshell, I think it is real important to segragate MDS children and treat them differently. In the long run, it only benefits them. > >Terri Blades, 17 yrs., MDS and , 9 1/2 > >

[Guest guest]

,

I certainly did not mean to upset you in any way by my

comment. I only meant that mds is different than ds.

Because persons with mds have only a percentage of the

ds cells they are often much different than a child

with other forms of ds. Many children with mds are

very high functioning individuals with no mental

impairments. They often are misdiagnosed for so long

because of this. They often do not have the medical

problems that children with ds have. Sometimes they

don't even require physical therapy because they do

not have low muscle tone. Up untill 1999 there was no

information about mds available to those parents of

children with mds. The only info available was a small

paragraph in a book. Each parent that I have spoken to

has said that that simply was not enough. Each parent

that I have spoken to said that the ds books did not

describe their child. I know that 13 yrs. ago, when my

son was diagnosed at 2 1/2 yrs. old, I wanted more

than anything to find out all the information I could

about mds and what it meant for my child. Three

sentences didn't do it for me. And I had no one to

talk to that had been in the same situation. I

developed many friendships with mothers that had kids

with ds, but they and I both realized that our kids

had nothing in common. I am not saying that my child

is better than them! My child can not make friends! My

child can not speak in an appropriate manner in any

situation. My child has adhd and can not sit still for

more than a minute. The one thing that I did have in

common with those other mothers.....We were all heart

struck that our children had a disability. There were

nights when we sat up just to make sure that our

children were breathing. We all felt as though we were

completly alone.

But to say, " My child is better than another child! " I

have 5 wonderful sons. Each one is unique in his own

way. None of them are better than the other. I love

them each in a very special way. They may never become

presidents, doctors, or sports heros, but that is ok

by me, because whatever they do, they will be great at

it. But, no, they are not 'better'. They are each

different. Arron is great with machines. wants

to be in the service. Tim wants to be a writer. Stevan

wants to be a singer. Garrett wants to be a cowboy.

Once again, I appoligize if I offended you, and I

invite you to stay with our group

Kristy Colvin: President, IMDSA

Mom to Arron,20, ,16, Tim,15,(MDS) Stevan,14,

and Garrett,5

" The only handicap a person has are the people around

them! "

--- lauralk38 wrote:

>

>

> > Because mosaic down syndrome is so

> > rare and different from ds, some of your questions

> may

> > not have an answer, but it is worth the try.

>

> Kristy - I'd agree that the mosaic form of DS is

> rare........but I

> heartily disagree that it is very different from the

> other forms of

> DS for a great number of the people that have it. I

> have personally

> never heard that people with mosaic DS have any

> different health

> issues than people with " garden variety " DS.....but

> maybe I'll go to

> the website you mention and ask that question. I

> think that it would

> behoove anyone that has a child with mosaic DS to be

> as knowledgeable

> as they can be about " garden variety " DS - you are

> truly missing out

> on a lot of support or information if you somehow

> think that your

> child is different from (or, <<gasp!>>, better than)

> all those others

> out there with some other form of DS.

>

> Just my 2 cents - I will certainly follow up on the

> website you

> mentioned - thank you for sending it.

>

>

>

>

>