Site with video on DS

[Guest guest]

Hi Everyone,

This site has video of parents talking about their 3 daughters with Down

syndrome. The daughters do not have MDS, but I thought you may enjoy hearing

their comments.

Also, the site has other links with animation that explain how Down syndrome

happens and reproductive issues with Down syndrome. Please keep in mind while

looking over this site that all the views on the site do not represent a person

with MDS, so many of the issues can have different outcomes since your child has

a percentage of normal cells.

http://www.ygyh.org/ds/have07.htm

Kristy

[Guest guest]

a,

I totally agree with you on the not using " people first language " Whenever I

hear someone say, " He is Down syndrome " Or " I have a Down syndrome child " it

makes me cringe! And I did when I listened to the videos, but tried to look past

it. (I have a real trouble looking past it though) The child is a child that

happens to have Down syndrome. You wouldn't say " He is high blood pressure " (off

my soap box with that...I wrote a whole paper on that subject lol)

The main reason I sent the site to the group was 1) when they were talking

about how they felt when their child was diagnosed. (I didn't feel devastation

but I know that some families do) and 2) the other links that involved

explaining the reproductive system since we had a question on that.

I also agree that the family was not very positive in the way they were

raising their children. (I have a whole speech on raising children like " normal "

children, ask our conference attendees! LOL)

Thank you for sharing your comments on this. I feel the same way that you do

about the videos, but, I thought that the animation on reproduction may be

informative.(even though the outcome for MDS can be different)

Kristy

alldunn33@... wrote:

Kristy,

As a parent of both a child w/ Ds and a child w/ Mds, it is my personal

opinion that nothing in that video clip is of benefit to a family with a child

with Down syndrome. I was truly sick to my stomach when I watched that. The

language was demeaning (not people first at all!), the thoughts and

perspectives were antiquated, if not down right offensive! I felt like they

were

talking about lap dogs not children! With all the positive stories of what is

going on in the lives of individuals with Down syndrome why on earth would a

group (like the one hosting that website) think that the message that couple

had

would be worthy of sending out over the Internet. They made statements

that contradict the very things I am believing for my sons- a full and complete

life, where he determines his life path, knows intimacy, the reward of hard

work and full membership w/in his community. As you can tell, this is a hot

button issue for me and I mean no offense to them (or Kristy for passing

along the link). I have no doubt that they have a great deal of love for their

children, but for gosh sake, have they no hope, dreams, vision!!!! OK,

I'll get off my soap box now.

a

Beaverton, OR

Todd (Ds) & Jay (Mds), twins 13yrs