Brother of an 11 year old girl with down syndrome.. help! - Down Syndrome Message Board

prjr99 · 07-22-2005, 03:16 PM

My sister is 11 now, and she has down syndrome but she can't talk at all and doesn't even respond when anyone calls her name. She is very playful, but aside from that shows no signs of communication. She isn't potty trained, either. And she doesn't like walking too much.

From what I've read and seen kids with DS usually have developed a few basic abilities by the time they hit 10 years old. But for some reason my sister still hasn't. And she is now hitting puberty (has some noticeable physical changes that're becoming most apparent). I'm really concerned about what to do. Some people have suggested that she may be partially autistic as well as having Down Syndrome.

Right now I'm only living with my mom and her. And my mom isn't getting any younger, and I'll probably be going off to college soon (I'm 17 right now). So do you guys know of anywhere we could go to get some help for her? Like some type of intensive therapy or something? There were no early intervention programs when she was smaller (we were in Puerto Rico at the time) so I guess that makes things harder now, or does it? I don't know... but I'll appreciate any advice you have to give. Also, for some reason she can't stop putting her hand on her diaper (it's weird.. but she does this a lot) and I can't get her to stop that. Any suggestions?

-Jose

DaVinci · 07-23-2005, 06:58 AM

Jose
There's many options available unfortunately hardly any of them are cheap.
Look up behavioural modification or applied behavioral analysis(ABA)with downs syndrome or autism - I used the "Me Book" by Ivar Lovaas - lots of useful tips in there, and it's been out quite awhile so may be in your library system somewhere. The good thing about it is that you can do it on your own or get the "experts" involved.
PECs- picture exchange communication system is another system parents find useful, despite using pictures it has been proven that it encourages speech also. Again this is something easily done at home.
Signing is another option, starting with simple signs like "toilet" and "more" - there's signing books and tapes at the library too. An expensive one that I first experimented with an than got advice from the experts is -biomedical treatment - DAN - defeat autism now - I believe all our children/sibs can benefit from this one - a DAN doctor will recommend specific tests to find out the biological abnormalities and when the results come back, recommend treatment - vits/min/amino acids, chelation etc.
I've done all these and more with mostly success, especially with the biomedical one, if they are feeling better and the brain "fog" or whatever it is is gone or at least dissipated than they are more likely to learn.
She's lucky to have such a caring brother, good luck with school!

Karen W. · 07-26-2005, 10:33 AM

Hi,
I'm wondering if your sister's hearing is not good, I would first see a specailist to have them test her hearing, If she's not responding maybe it's because she is not hearing you well. Once you've done that, I would request for her to have an M-teem meeting at her school, That is where various people like Phycoligists,social workers and specail needs teachers come in and do allot of different testing, they will find out where she is at, then they will have a meeting with you and your Mom to tell you what they have come up with and what she needs.They will also ask you what you want her to accomplish, You must request the type's of therapy you would like her to have. I would also request one on one, not group therapy. They some times will try to do group because it saves the school money but that is what we pay our taxes for so she deserves it the one on one, she won't be distracted.Did they ever say what level of retardation she is? Now my son is moderate. His speech ahs always been delayed, he is now 19 years ole and he is still learning new words. It kind of funny, the words we don't want him to say, he says real clear- like LOOSER!
Karen W.
P.S.-You always have to fight for these kind of kids because they cannot fight on there own, your a good brother.

prjr99 · 08-01-2005, 04:38 PM

Thanks for your support and all. And I had no idea that they did those type of meetings at public schools. But I'll try it this year. And my mom hasn't told me what her level of retardation is (she probably doesn't know either). Anyways.. thanks again for the replies.

Drafter · 08-03-2005, 08:32 PM

Don't forget, because of the 'Americans with Disabilities Act', schools MUST provide screenings and therapy for all disabled children. This is the law and the school can get in big trouble if they don't provide it. They must also test her hearing, at no charge to your family. If the school seems reluctant or gives you the run-around, contact your local ARC (Assoc. for Retarded Citizens) group and they can put you in contact with the right people.
Hang in there. She's lucky to have you as her brother.