PDA

View Full Version : Looking for info about telling your child about their disability..


LvsTnk
03-23-2001, 03:47 PM
Well, I just read a newsletter I get and the Mom had written about telling her daughter that she has Down Syndrome. I know at some point we are going to have to start discussing this with my DS, but when is the right time? This girl was in kindergarten and the Mom wanted to tell her before she had a talk with her classmates(she was included). Any thoughts on this? My DS, who has Down Syndrome as well is 9yrs and is pretty high functioning, but I don't think he could really understand what I was talking about. I would appreciate hearing anyone's experience with this. Thanks!

teri
03-24-2001, 09:36 AM
We started reading stories about other kids who have similar issues, and talked about the similarities in their experience. Reading story books with pictures was a fine place to start. We have also been very direct with our kids from the start - much to the chagrin of certain family members who thought it would cause our daughter in particular to feel more stigma - as if hiding the fact that she is different or being in denial and letting hte issues go unaddressed would be any more helpful :rolleyes:

Keeping things quiet is more stigmatizing than talking about them in a constructive way - at least that is how we have approached it. But then, we are dealing with different issues.

My niece has Down's Syndrome, it was always clear to everyone, including her, that she was very different because she is very low functioning.

http://www.wdwinfo.com/sites/family/galc.gif DIS disABILITIES Discussion Board FAQ under construction! (http://www.wdwinfo.com/sites/teri4/DISindex.html)
"My brain takes a vacation just to give my heart more room..."
teri@iluvdisney.com

LvsTnk
03-24-2001, 05:14 PM
Teri, he thinks he looks and acts like every other kid. That is my problem. If you showed him a picture or video of 2 boys one with and one without Down Syndrome and asked him to choose which one was most like him he would he would pick the one without. He does not have a clue. Did I make a mistake by not pointing this out early on? I thought he would not understand what I was talking about, not that I was keeping it from him. I remember going to a conference when our DS was just a baby and this young women from Italy was speaking about the fact that her mother never told her what was wrong with her, and how it had effected her, I did not want to make the same mistake. I appreciate your reply and the idea about the books, we will have to have more discussion as we read them from now on.

teri
03-24-2001, 09:08 PM
hmmmm.... what about camp, or meetings or outings with other Down's families? Sounds like you have been totally mainstreamed. :) It is probably still OK now, but when other kids start having girlfriends/boyfriends, dating, driving, etc. it will be a real shock to find out that other kids see a big difference when he does not.

ParentsPlace.com has a board for families with Down's kids, at
ParentsPlace.com Down's Discussion Board (http://boards2.parentsplace.com/messages/get/ppdownsyndrome33.html) which you might want to check out, maybe someone there has better ideas for you. But don't forget to come back! :)

http://www.wdwinfo.com/sites/family/galc.gif DIS disABILITIES Discussion Board FAQ under construction! (http://www.wdwinfo.com/sites/teri4/DISindex.html)
"My brain takes a vacation just to give my heart more room..."
teri@iluvdisney.com

LvsTnk
03-25-2001, 08:33 PM
I guess I am gonna have to get myself in high gear to figure this one out! He does have alot of activities right now with other kids with special needs(baseball, playgroup, religious ed., and horseback riding)but he would prefer to associate with the adults in charge. You know you spend so much time with school issues and trying to keep them healthy that I knew I would blow something sooner or later. Sorry to ramble it seems like a hard time for all my kids lately. Thanks so much for the link Teri!

teri
03-25-2001, 08:38 PM
That's why they pay me the big bucks...
;)

http://www.wdwinfo.com/sites/family/galc.gif DIS disABILITIES Discussion Board FAQ under construction! (http://www.wdwinfo.com/sites/teri4/DISindex.html)
"My brain takes a vacation just to give my heart more room..."
teri@iluvdisney.com

Judy from Boise
03-26-2001, 10:06 AM
My daughter has very high functioning autism, and we have never had a talk where we state she has a labeled "disability". We do talk about "my brain doesen't work like your brain" when she gets frustrated that I can't remember every detail that has ever happened in my life :rolleyes: , we talk about how other children often enjoy playing differently than she does and might think the way she likes to play and talk to herself is weird, we talk about how other kids really care what people think about them etc.
The thing is she always ends up saying something like " well that is just what makes me, me ". She is so very sure that her friends love her, and anyone else just doesen't matter.
At this point it would be counter productive for me to do much more. I am sure as we approach Jounior High I may need to be blunter, but that can wait.

<img width="200" src="http://www.wdwinfo.com/sites/judyfromboise/easter.gif">

sncbird
03-26-2001, 01:54 PM
Hi LvsTnk,

I'm the other Bartlett, IL person on the DIS.

Could you e:mail me directly sncbird@home.com ?
There's a family down the block from me that has one or two sons with Down's Syndrome. You didn't just get a Golden Retreiver Puppy did you? LOL
What a coinsidence that would be!!!

I would love to chat with you directly. :D

<font color=#cc3399>HAPPY EASTER
http://www.wdwinfo.com/sites/routemandan/poohegg2.gif

teri
03-26-2001, 01:58 PM
Uh-oh, it is happening again, I feel it, I have to break out in song... I can't stop it... look out!!!!
It's A Small World After All...
:D

http://www.wdwinfo.com/sites/family/galc.gif DIS disABILITIES Discussion Board FAQ under construction! (http://www.wdwinfo.com/sites/teri4/DISindex.html)
"My brain takes a vacation just to give my heart more room..."
teri@iluvdisney.com

sncbird
03-26-2001, 02:27 PM
LOL Teri!!!! :D :D You always have at least 2 posts a day that crack me up plus several that are very insightful!!! You're one of my favorites on the boards!!!

Now I have that song stuck in my head!!! LOL!!! :rolleyes: :rolleyes: :rolleyes:

<font color=#cc3399>HAPPY EASTER
http://www.wdwinfo.com/sites/routemandan/poohegg2.gif

LvsTnk
03-26-2001, 04:36 PM
Hi!sncbird, no we tried the golden puppy 2 summers ago. That dog thought Jack was his personal chew toy! I will try to e-mail you but I am not too good at all this yet. It is a small world!....O.K. I try to get all my eggs in one basket before I discuss this stuff with my DH, why oh why does he have to give me a hard time! He likes to hide his head in the sand until absolutely necessary. I guess that is his way of getting through it, I on the other hand am a cronic worrier! I just wish I knew what my DS was thinking then I would know where to start. I am still looking for help if anyone is still offering. Thanks!

teri
03-26-2001, 04:52 PM
husbands... :rolleyes:

http://www.wdwinfo.com/sites/family/galc.gif DIS disABILITIES Discussion Board FAQ under construction! (http://www.wdwinfo.com/sites/teri4/DISindex.html)
"My brain takes a vacation just to give my heart more room..."
teri@iluvdisney.com

SueM in MN
03-31-2001, 10:34 PM
I read an excerpt from a book called: Count Us In: Growing Up With Down Syndrome by J. Kingsley and M. Levitzv. The authors are 2 high functioning young men with Down Syndrome who wrote about their feelings, dreams and just what it was like to grow up with Down Syndrome. It might help you to figure out how to talk to your child. I also wonder if there is a national organization that would have some written information about how to approach the subject.
Also, I was at a workshop last fall on transi tion planning with my DD. It was sponsored by the Minnesota PACER Center. One of the things they mentioned was that kids with disabilities often become young adults who have never discussed their disability with their parents. It wasn't that they felt the questions couldn't be asked, it was more that the kids felt their parents maybe didn't know enough about their disability to talk about it. The parents meanwhile, were waiting for a good time. I know there are similar organizations to PACER in every state. Here's a link (http://www.pacer.org/national/relatedpacerlinks.htm#ptis) to similar organizations in each state.

SueM in MN
Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)

nancycels
04-01-2001, 03:50 PM
i have 2 daughters, not w/downs but who are mentally retarded... (terrible name for it, but...) anyway, when my oldest was in 6th grade, i got called into school, seems my daughter had written in her journal that she didn't think her dad knew she was mentally retarded(i tend to do all the conferences etc, and the TLC for problems at school)she wasn't upset, just worried he didn't know. well, in the long run, she learned that her abilities were different, that she learned a bit differently, or that it was much harder for her to earn an A in the same class than it was for some of the regular ed classes she'd been mainstreamed into. I think the important thing they need to know, is that they aren't alone, and that we(parents) don't expect miracles, but we do expect them to be the best they can be. As a result, I had a kid who joined special olympics, but who was also on the high school track team. Who took special ed classes, but who was the first kid to take computer classes in special ed. She pulled a lot of firsts... and made it easier for kids who followed her. She never let it get overwhelming for her. My 2nd daughter is interested in tv/movies/theater. We signed her up for a summer program that one of the local univ. has for theater for h.school kids. Now that she's too old for that program, she helps do lights for shows at a residential facility for kids who have greater handicaps than she does. I guess my point is find something that makes them feel ABLE, not disabled. It helps in the long run. And never avoid talking about it w/them. We've had a lot of very heavy conversations, but they've always had a positive note. GL.

LvsTnk
04-02-2001, 06:38 PM
Sorry I didn't reply sooner, we just got back today from WDW. Anyway, I do have the "Count Us IN" book so I will have to get it out and re-read it. I guess my mind just went in other directions with him and now I will have to catch up with this. I have to say he is in all kinds of activities some of the kids have special needs some do not. I have gotten great advice here as usual, and we will just have to take it slow because he is getting older and has no idea he is any different. He thinks he just Jack! Thanks Again!

6_Time_Momma
04-02-2001, 06:56 PM
My DS is 9 years old with DS, and I am not sure how I would go about it. He is non-verbal, so that makes it even more difficult as I have a hard time knowing what he does and does not understand. If you find any good answers, let me know! :)

Kristy-

August 1989-Ramada-Honeymoon
August 1992-Swan-International Down Syndrome Conference
February 1997-Wilson World (now Diplomat Resort)-Family vacation
September 2000-Days Suites-Family Vacation
**May 2002--HIFS--Family vacation

SueM in MN
04-02-2001, 08:04 PM
I've always given the benefit of the doubt to a child with a disability and assume they understand a lot more than you think they do.
When my DD was 9, my dad was very ill and we knew he was going to die. I needed to talk to her about death, had never talked to her about it before and didn't know what she knew. I asked her if she knew what dead meant and she nodded her head, "yes". I expected her to say "no" so I could explain it to her. I asked her if she could figure out a way to tell me what it meant (she is non-verbal, but does do some modified signing). What she signed to me was the signs for "finished" plus "sleep" plus she pointed to her eyes and then shut them tight. When I actually had to tell her he died, she started signing "Grandpa" , then pointed to the top of her head and made her finger go off into the sky.
It's amazing to me sometimes what a non-verbal person can tell you.

SueM in MN
Co-Moderator of disABILITIES (http://wdwinfo.infopop.net/OpenTopic/page?q=Y&a=frm&s=40009993&f=38009194)