Telling your child about DS

[Deannalee]

I am just curious about how/when to tell your child that they have DS. Do you guys wait until they ask questions (if they do) or do you just tell them when they are little. This has been bugging me quite a bit and I don't know why. I read the post....sorry i forgot who wrote it.....about kids say the darndest. i was so proud of that little girl for piping up and saying her cousin was going to be special like her because he had DS too. I just want to do what is right and when it is right. Thanks.

Deanna

[christie]

We told Christopher's sister when he was born that he also had DS, she was 3 and 1/2 As far as Chris goes we have just openly talked about DS since the get go. But for my Character at this point DS means nothing to him other then just a word he hears us talk about now and then.

This ? has been asked before and I do believe there is a long thread somewhere here bout this very subject. Just not sure what page

CC

[Claire]

Adam is only 6 and I don't think he realizes he is DS and that's one of the reasons he gets so frustrated when he can't do what others do. I do bring him along for all my elementary school presentations on DS and they all love him. I'm sure one day he will ask. His sister who is only 1 year older asked a long time ago why her brother couldn't walk. It's hard to explain it to a 3 year old so we made it simple, told her he was Down syndrom which meant he had a little special extra bug in him (she loves bugs) that we didn't have. Two years later a little boy at the park asked her " Why does he need a walker to walk?" Savannah replied "Cause he is lucky he has an extra bug that I don't have!" I thought it was so cute, and she said it so casually and went on with her playing like nothing had happened. We will be giving her more details when she ask the questions, as for Adam I'd like to know from mothers or fathers of older DS children what age their child popped the question. Just curious to know.

[Robin]

CC, I remember that thread you are talking about and yes it was a long long time ago, I am surprised at your age you remembered, LOLOL ;D(sorry but you had that coming, LOL) Anyways, I am with CC here, we have just always talked openly about DS and Chase has always been around for those conversations. We had a heated discussion at school a few years back about whether Chase knew he was different or not, and while I think Chase knows he is different, it is the norm to him and thus, no big deal. I dont plan to ever sit down and have a "talk" about it with him unless he asks. I want him to know he is fine the way he is and to me that is by not making an issue of him having DS to him. :)We have however had the discussion a few times with Zach who is five and he seems to understand it pretty well now that he knows why Chase is the way he is
hugs, Robin

[shellk]

Kourtney is 5 and like CC and Robin we openly discuss DS in our house, when Kourtney was born our oldest ones were 7 and we took them to the NICU to see thier little sister and they both asked why she was in there and we explained it to them and they were okay with that. Currently we are getting ready to get into Behavioral Modification with Kourtney and I thought it was vrey special that my stepdaughter told me that if we need to do therapy with Kourtney she was more than willing to come along. Kourtney I don't think knows that she is different and seems to get mad when she can't do the things other kids do. But, if she ever asks we will try to explain it to her

Michele

[momofrussell]

I don't think their is a magical age. As far as comprehension goes, you'd have to wait and see when YOUR child is ready for it. We too have always talked about DS in our family.. like it's pizza! LOL Russell is 6 and due to his issues, his comprehension is WAY down there, so he definately doesn't "get it" and who knows if/when he will. But we have two daughters, ages 11 and 3 so we have always talked about it. Right now we mention it with our 3 yr old, Reece, because she is seeing lots of differences with Russell and he is the OLDER brother.. but I don't even think SHE understands it all.

Go with what YOU're comfy with!

A.

[Haleysmom]

Deanna,
That was my daughter Haley ;D who is very excited to have a new cousin. While I don't think she totally comprehends what it means, she does know that it makes her very special. We have always talked about DS in front of Haley. I do feel it's all what you are comfortable with.

Sue

[mom2kayla]

We have always talked openly about ds, Kayla is almost 14 and she knows she has ds. She enjoys looking at pictures of other kids with ds. Her older sister who was 2 when Kayla was born has always known and we told her right off the bat, she may not have understood at first but now she helps educate others about ds. Stacey

[rickismom]

Well, I didn't wait for Ricki to ask- I wanted her to know that there was a reason for all the stares, the difficulty in studies, etc. A year and a half ago, when she was age 8+, I was disigning books for her reading each week. So one week I designed a book about a girl with a leg brace who is drawing a picture. First the book describes that she is drawing the picture, coloring carefully... sand then it mentioned that she has a leg brace because she was born with legs that don't work so well. Then the book went back to the drawing, and how the girl got satisfaction from drawing the picture so well. In addition, I printed picture cards of kids with several disabilities, and matching card "aides" [blind girl-seeing eye dog; hard of hearing boy- hearing aid; Child with CP- crutches; and the picture of a friend's child with DS - compter for writing, as this child's handwriting is poor so she prefers computer.] We explained how all of these kids had difficulties, that G-D made them and wanted them this way it is NOT a mistake--- and G-d gave the tool to help them. Then we mentioned that she also has DS... and even tho' she doesn't need a computer to write, she DOES need a learning assistant, and that DS makes it harder for her to learn--- but not impossible. She has heard the words DS a lot...

Lately she has been asking about the word "retarded"- I have tried to explain that it is just a term, albit a missused one, but here she is blocked by her emotions (I'm NOT surprised!!!) She knows that certain friends of hers have DS (friends from a once- a week club), and she says that they are nice. But kids that are R are something different! I pray that I can at least keep her from getting a bad feeling about the word DS!

She obviously does not understand fully (she is going to be 10 years old this fall--- GEE how the time flies! We're halfway to adulthood, YIKES!) the meaning of DS. But she knows that it includes her, and that kids with DS are also nice. She can SAY that it is hard for her to learn something because she has DS., but I'm not sure how much of that she really understands.

[Jackie]

I will share with you the way I handled Emily and this situation. When she was born over 24 years ago the issue of ADOPTION was very much in the news....the new theory then being that adoptive parents should start from the day their child came home saying things like...."I am soooo glad we ADOPTED you"...etc...so it would never be a shock when they first realized.

I decided this would also work with DS so I just incorporated the words into my conversations... to and with Emily whenever I thought it was appropriate.....now dont get me wrong...I didnt constantly say...YOU HAVE DS....LOL....just never avoided using the words and found books about it...etc....to share with her.... I also told her early on that we had to have some special meetings with teachers about her learning style because since she had DS she needed some extra help. So really she grew up thinking that she was somehow endowed with something EXTRA special that others could only dream of having....LOL.

Now that she is an adult....she understands the limitations she has....and sometimes even says she wishes she were non disabled...but doesnt dwell on it.

I knew some families back then who never let the words Down Syndrome be used in their childs presence and I dont think that is right. DS was just a big part of our lives once Emily entered it so it seemed very natural to talk about it and include Emily in the discussions even as a babe.

Just my theory....worked for us.......

Jackie

[Deannalee]

I just wanted to thank everyone for the replies. My kids all knew before the twins were born that they might have DS. I educated them on what is was and what we might see. When Jordan got hydrops, they also knew that he would probably die. I try to prepare them for the things I can. The kids have all been great and are Justin's biggest cheerleaders (besides me, of course). Down Syndrome is talked about a lot in our home, I just hadn't started to tell Justin he has DS. He is 18 mos and I just did not really know how/when to start. He doesn't even talk yet! I have started signing with him, but he really only does mama. I basically have just been telling him how smart, cute, etc he is.I think I will try to start telling him somehow now, I just don't think he will "get" it since he is pre-verbal. Thank you all so much.

Deanna

[Emilysmom]

Deanna,
We have talked openly about Down syndrome since Emily was born and Emily has noticed other kids (pictures in books and on the photo album here at Uno Mas) who she will say "is that me"??? She notices the similarities of some of the children with Ds, and comments that they look like her. I always comment "that little girl has Down syndrome, just like you". We also got a book when our other kids were younger that simply explained Down syndrome on about a 4 year old level. It's called "My Sister is Special". I read that book once several years ago to Jordan and Emily together and personalized it a bit by adding "just like Emily" at times. She does not talk about it, so it's hard for me to know if she really understands.......and yet, I believe she does. I think she just doesn't see a reason to dwell on it. We've also made sure to always refer to Down syndrome in a positive tone.
~
Susan

[Debbie]

I don't remember the exact age when my mother told me that I have Down syndrome. I do remember when she was going through nursing school and I'd see her with her books on the kitchen table studying or writing. I may have been fourteen or fifteen when she told me. Really, I believe she told me when I was much younger but I couldn't really understand what it meant at the time. I may have been nine or ten the first time she told me.

I knew there was something different about me though when I was in third grade. Actually it all started in first grade.
I was having trouble keeping up with the other kids in my class. My teacher would look over at me and see that I was not taking in what she told me to do or taught me to do. I remember her putting a chair next to her desk and telling me to come over and sit next to her. This is my first memory of what I call "Something strange." I did not think anything about it at the time. I do remember that I felt separated some how from the other kid's and I guess that was when I felt different. I must have been older when my mother explained that I had something called,"Down syndrome." It is sort of like knowing that something feels different inside of you but you can't begin to really know how to explain it. It is like asking a poet how they can write the way they do. They may not know how to explain that because what they write about is not quite an idea yet, but there is something there, hovering, almost coming to them. I don't know if this makes any sense to you. I am a poet so I can explain this in some way, I hope a clear but yet, vague way. I knew I had something different inside of me, I couldn't quite figure out what it was exactly, but I knew. I could see it the teacher's face, I could see it on the other kid's face. I thought, What is this? Why can't I move like them? Why am I slower? Why can't I understand? This would come to me often, usually on the playground after a class. I'd feel sad sometimes, wondering why I couldn't be like the other kid's who could be quicker, and move my hand up when I knew the answer. This feeling would stay with me all through my school year's.

Don't think your child doesn't know. If they don't know or understand at five, six or seven, they will when they are ten, eleven, twelve and so on. If your child does know at eight or nine, they may not know how to say they know.
That is okay because they know something is different in them anyway. It is up to you to explain this to them. The main thing to do of course is to make this as accepting and positive to them.

[christie]

THANKS SUSAN girl for mentioning I go back to this thread and read DEBBIE's post ;D

OMG DEBBIE girl, THANKS for posting what you did right from your heart

I have to say some of what you wrote was hard to read, making me worry bout how my guy feels or may feel, BUT I love the posts that state the way it is, nooo pretending and you living this, has helped me understand more THANKS

CC

[Deannalee]

Debbie,
Thank you so very much for explaining this so very eloquently. It is wonderful being able to get an answer from someone who speaks to the heart of it. My son is so very special to me and I want him to understand why he may feel different from other children, but be able to embrace it with pride. Again, I thank you from the bottom of my heart.
You know, I have started to write a little bit myself, too. I am dappling with poetry right now and am hoping one day to be published. I would love the opportunity to read some of what you have written sometime. God Bless.

Deanna