[tri-med] Re: any ideas

Hi Thea
Our son Cody also has Trisomy 9p.  He is also very busy, non-verbal and hardly 
ever walks is always running.  He uses signs, a communication book and board 
and pecs.  We started using pecs a lot more over the last few months he seems 
to have calmed down alittle.  He gets very "busy" if things at school are not 
perfect.  Example:  we got a new student four weeks ago and that really set him 
off,  if we have subs in the room he is different and one para he really loves 
Mary, who has worked with him since kdgn.  If she is off he does not a lot of 
hitting!  I truly believe that some of the issues Cody has is because he is 
non-verbal.  He wants to tell us and cannot.  That is so hard and I am sure 
frustrating.   Ask about communication devices for him start using pecs and see 
what happens.  You can even take pictures of different things around the home, 
food, toys, people in his life, pets and places you take him.  Use these 
pictures to help him communicate with you and your family
 .  Sho
w him a picture and tell him we are going to church or we are going to the 
grocery store.  Put out two pictures of food that he likes and have him pick 
the one he would like.  Example lay out yogurt and apples sauce.  Give him the 
one he picks.  Good luck and I can feel for you.
Hugs,
Tracy mom to Cody (Trisomy 9p)
-------------- Original message -------------- 
From: Thea <haidensmom@xxxxxxxxxxxxx> 

> Hello! I have never posted here but have posted to tri-family once or twice 
> in the past. Wondering if anyone has had any issues with certain behaviors in 
> trisomy 9-ers. My son, Haiden is 4 years old. He has partial trisomy 9. This 
> past year he has been very "trying" (is that why they call trisomy kids 
> "triers", lol!). He has always been "busy", constantly doing something. 
> However, he has begun to get more busy and talk (has limited speech) very 
> loudly. It has sure worked my nerves. Haiden seems to do the exact opposite 
> of 
> what you ask him to do. If you say, "Haiden don't sit on the table", he sits 
> on 
> the table. The power of suggestion is huge to him. Even if we are discussing 
> his actions and not directly talking to him, when he hears what we are 
> talking 
> about he does it! YIKES!!! Haiden is so loving, but very impatient. We have 
> tried Ritalin (thanks to a psychiatrist at Mayo) which DID NOT HELP. He 
> actually began with tongue thrusts and facial tics when he 
> took one dose. Needless to say, we never gave him that again. Then, we tried 
> Strattera. Didn't help either. Haiden got excessively emotional/tearful and 
> then began to hit himself. We stopped it immediately. We have tried all sorts 
> of herbal stuff which seem to make him more hyper. I don't know what we can 
> try 
> next. We have to give him a small dose of Clonidine to get him to fall asleep 
> or 
> he stays awake until he drops (which is really late and no one gets any 
> sleep). 
> The only bad thing is that it doesn't work for the whole night, so he gets up 
> during the night and either wants to stay awake or sleep with us. I recently 
> had another child in January and am so exhausted. I really need some advice 
> from anyone. Understand that Haiden is extremely bright and very perceptive. 
> He doesn't take "no" for an answer. We love him dearly and want to help him 
> calm down a bit so that he can learn as much as he can; make as many friends 
> as 
> he can; and handle life the best that 
> he can. I could go on and on, but am pretty tired and since both children are 
> sleeping, I should be too. Thanks in advance for any info!!! 
> Thea 
> Mom to lovable Haiden Briant (4 years old, partial trisomy 9 and adorable and 
> born 2 months early on the most appropriate day...July 4th! Probably why he 
> is 
> soooo independent) and Ava Grace (8 weeks and very sweet!) 
> ohh, and wife to Brian (going on 7 years!) 
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> 
> Building ___ooOOoo__ Rainbows 
> www.trisomyonline.org 
> Families Helping Families On-line 
> 

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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