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mom of two kids with down syndrome needs help

Posted by on Mar. 27, 2013 at 11:00 AM
  • 10 Replies

Hello my name is Natosha, and this is my first time on this site. I am married and have two beautiful children. Both my son(8) and my daughter (6) have Down syndrome. They are like night and day. Brynt is very healthy, got off the bottle at a year old was walking by 2 years and he is now in first grade in public school and is doing very well. Kloe was born with heart defects and has had two open heart surgery's and is going to have another one within the next year. She still will not give up her bottle, she was walking by age 4 but still not running. She is suppose to go into kindergarden next year but the only problem is getting her off the bottle and spoon/fork fedding herself. She will finger feed herself but thats it. She will not touch a sippy cup. She also has thyroid problems and her medication requires her to drink lots of water. She is in pre-school and her teachers and i have been working on this for years and we just dont know what to do to get her to feed herself. ANY suggestions anyone has will be greatly appreciated!

thank you

by on Mar. 27, 2013 at 11:00 AM
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by Emerald Member on Mar. 27, 2013 at 11:04 AM

Welcome to CafeMom Natosha,
Does she see how her brother eats/drinks like a *big boy* so to speak?
Can you just give her the sippy cup at a meal & no bottle?
Here is a group that may be of help .. Raising Kids with special needs .
Am sure others will have more suggestions for you.
So nice to meet you :)

ScrChk23
by Amanda on Mar. 27, 2013 at 11:06 AM

 Welcome our group!!  I have not had any experience like yours, however is there a special needs class at the school she will attend?  I know there was at mine for children with similar issues.  Have her doctors said anything about brain trauma due to the surgeries and medication at an early age?hugs

jnbkp4
by on Mar. 27, 2013 at 11:09 AM

Yes they eat breakfast and supper together at the table everyday. I have tried to give her sippy cups at meal times and sometimes most of the day thinking she will drink it sooner or later i know she is thirsty, but she wont even touch it.  Thank you for your reply :)

jnbkp4
by on Mar. 27, 2013 at 11:15 AM

ScrChk23-  Yes she will be in the communication disorder class room and that is where my son is also and the teacher is amazing, but she cant go unless she is able to eat lunch and snacks at school. When her teachers try to  get her to eat at school she throws a fit and has now learned the gag relfex technique. She eats good for me at home but only when i am seeing her...and her thyroid medication is the only medication she is on.

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by Emerald Member on Mar. 27, 2013 at 11:32 AM

Keep trying with the cup .. remind her that she is a big girl,
Don't give up with this .. what has your pedi suggested?

Quoting jnbkp4:

Yes they eat breakfast and supper together at the table everyday. I have tried to give her sippy cups at meal times and sometimes most of the day thinking she will drink it sooner or later i know she is thirsty, but she wont even touch it.  Thank you for your reply :)


ashley9603
by on Mar. 27, 2013 at 11:34 AM

I would say keep offering her the sippy as much as possible!Good luck momma.

RADmomma
by on Mar. 27, 2013 at 12:06 PM
Will she respond to a reward system?
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jnbkp4
by on Mar. 27, 2013 at 12:22 PM

i cannot find anything that she responds to on a reward system, she doesnt like suckers or anything sticky she dont like cold or hot things  she dont really like any sweets or fruits.....im telling you she is very picky and even more stubborn

LancesMom
by Ruby Member on Mar. 28, 2013 at 12:37 PM


Hi Welcome to CafeMom! Nice to meet you! Have you talked to her doctor about this? It sounds like she isn't ready yet.

mrentfrow
by on Jun. 26, 2013 at 12:45 PM

My son is 3 1/2, and he has DS. He just started walking, and still takes a bottle as well. He can drink out of a sippy cup, but he isn't efficient enough to drink large quantities. He is also on thyroid medication and needs those liquids! I feel your pain -- he doesn't respond well to either forcing or rewarding for things like eating. He can pick up food with his fingers (if it is something he will eat), but doesn't eat well with a spoon yet. He gets "tactile defensiveness" and throws fits if you try to make him do something; the more you force it, the more defensive he gets, which reinforces the defensive behavior. It's a vicious cycle. A previous OT recommended brushing and massage techniques to stimulate his development and retrain those defensive behaviors. Its seemed weird, but it really helped! What we have finally figured out is that he will do what he can when he is able and wants to! We have decided not to stress about it or compare him to other kids. He will be ready when he is ready! Legally, there is nothing that says she has to go to kindergarten at the "typical" age. However, don't give up on teaching those skills. Repetition and patience are sometimes the only way my son grasps new things. 

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