22q Deletion Interest Board: Re: deletion 22 q 13 syndrome

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Re: deletion 22 q 13 syndrome

Posted by Susan Gladstone on 2/27/2008, 12:51 am, in reply to "Re: deletion 22 q 13 syndrome"
121.217.135.29

Hello Paul

Your email bought back memories of my son Jonathan who did this sort of thing at this age too. I would definately agree with you that restraining makes things worse and I did not do that. However, do you have other children? I found that I had to attend to all my son's needs FIRST, otherwise it would be chaos. I'm not sure about your son, but mine, at that age spent a lot of time being driven about in the car - he liked that. The thing is that he would be getting frustrated if his needs wern't being met. You have to work out what he likes, enjoys etc. Jonathan started watching videos (not TV programes, as the adds interupted his concentration span) and I bought lots of those - musicals especially. Jon is in the severely disabled range , is your son? There is so much I could tell you and /or help you with I'm sure. I'm not sure where you live, but I would not mind if you called me any time. Jon is now 28, he developed lympoedema in both legs at about 14 years. He wears compression stockings. At 18 he developed bi polar disorder and he is on lithium permanently. Please do get back to me, I would like to help you.

Regards Sue

--Previous Message--
: Hi, I have a son with 22q13 syndrome
: who is 9 yrs old. We found out back
: in October when the Dr. ran a new
: test on him. Until that point we had
: no diagnosis. We are currently
: battling behavioral issues, such as
: throwing things and knocking over
: anything he can like lamps,
: dreesers, pictures, etc. It mainly
: happens when he gets mad. He doesn't
: talk yet so he can't tell us whats
: wrong. We are at whits end. The Dr.
: said to restrain him but that just
: makes it worse. Any help would be
: great, Thanks, Paul Smith
:
: Previous Message--
: Hi. I have a 28 year old son with 22
: q
: 13 syndrome and I would be very
: happy for any parent to contact me
: with any queation they may have
: about this condition. We have been
: through a great deal, but the MAIN
: REASON I can help you is that you
: may be able to PREVENT certain
: things from occuring along the way
: as your child grows and develops,
: having the knowledge of what is
: possible
:
: Yours sincerely
: Susan Gladston
: Sydney Australia
:
:
:

Message Thread:

deletion 22 q 13 syndrome - Susan Gladstone 2/6/2008, 3:57 am
- Re: deletion 22 q 13 syndrome - Adrianna Gill 4/12/2009, 5:39 pm
- Re: deletion 22 q 13 syndrome - Jodi Rhoden 5/30/2008, 12:12 pm
- Re: deletion 22 q 13 syndrome - Connie Spring 5/20/2008, 9:40 am
  - Re: deletion 22 q 13 syndrome - Susan Gladstone 5/20/2008, 5:06 pm
    - Re: deletion 22 q 13 syndrome - Connie 5/20/2008, 7:55 pm
- Re: deletion 22 q 13 syndrome - Paul Smith 2/26/2008, 2:00 pm
  - Re: deletion 22 q 13 syndrome - Susan Gladstone 2/27/2008, 12:51 am
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--Previous Message-- : Hello Paul : : Your email bought back memories of : my son Jonathan who did this sort of : thing at this age too. I would : definately agree with you that : restraining makes things worse and I : did not do that. However, do you : have other children? I found that I : had to attend to all my son's needs : FIRST, otherwise it would be chaos. : I'm not sure about your son, but : mine, at that age spent a lot of : time being driven about in the car - : he liked that. The thing is that he : would be getting frustrated if his : needs wern't being met. You have to : work out what he likes, enjoys etc. : Jonathan started watching videos : (not TV programes, as the adds : interupted his concentration span) : and I bought lots of those - : musicals especially. Jon is in the : severely disabled range , is your : son? There is so much I could tell : you and /or help you with I'm sure. : I'm not sure where you live, but I : would not mind if you called me any : time. Jon is now 28, he developed : lympoedema in both legs at about 14 : years. He wears compression : stockings. At 18 he developed bi : polar disorder and he is on lithium : permanently. Please do get back to : me, I would like to help you. : : Regards Sue : : --Previous Message-- : Hi, I have a son with 22q13 syndrome : who is 9 yrs old. We found out back : in October when the Dr. ran a new : test on him. Until that point we had : no diagnosis. We are currently : battling behavioral issues, such as : throwing things and knocking over : anything he can like lamps, : dreesers, pictures, etc. It mainly : happens when he gets mad. He doesn't : talk yet so he can't tell us whats : wrong. We are at whits end. The Dr. : said to restrain him but that just : makes it worse. Any help would be : great, Thanks, Paul Smith : : Previous Message-- : Hi. I have a 28 year old son with 22 : q : 13 syndrome and I would be very : happy for any parent to contact me : with any queation they may have : about this condition. We have been : through a great deal, but the MAIN : REASON I can help you is that you : may be able to PREVENT certain : things from occuring along the way : as your child grows and develops, : having the knowledge of what is : possible : : Yours sincerely : Susan Gladston : Sydney Australia : : : : :

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