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Topics for 2008 Conference   Message List  
Reply | Forward Message #132 of 974 |
Re: [11q_disorders] Topics for 2008 Conference

Linzee,
 
 I need to put more thought into it, but I was thinking of something specifically for our adolescents.  I know this depends on how many we have.  Perhaps we can do it as a transition years.  10-15 or something.  From my communication with other parents, I know behavior, hormonal changes , etc. become an issue.  I am planning to attend a seminar next week on puberty so I may  have more ideas then.  Perhaps something on Assistive technology/adaptive skills -- various ideas for parents from communication to play to computer alternatives to making things more accessible so kids can be more independent.
 
I'll give it some more thought. 




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Tue May 29, 2007 4:21 pm

Gretchenwarren@...
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Message #132 of 974 |
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I am starting to get together ideas for speakers for the 2008 conference and thought I might ask all of you for any suggestions for topics that would be of...
linzee_carroll
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May 29, 2007
2:20 pm

What about someone to talk about different therapies and what they have found the different areas of therapy to help, or even alternative therapies. Or a...
Jana Wells
janabananablue
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May 29, 2007
6:01 pm

Linzee, I need to put more thought into it, but I was thinking of something specifically for our adolescents. I know this depends on how many we have....
Gretchenwarren@...
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May 29, 2007
6:01 pm

I am sorry this took so long but I have been putting alot of thought into it. I think the one thing @ the 2006 San Diego conference and @ the 2007 European...
Jeremy Pyle
dad_11q
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Jun 20, 2007
2:26 am

I competely agree. We will definatley still do break out groups but maybe allow more time for them this time and maybe do it a couple of different times with...
linzee_carroll
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Jun 20, 2007
4:38 pm

Carolyn is 14 - will be 15 in Sept. We just found out 2 years ago that she has Jacobsens. Like all of you we have experiences so many things in so many...
Syretz Family
syretz@...
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Jun 20, 2007
12:28 pm

... that she has Jacobsens. Like all of you we have experiences so many things in so many different areas of CArolyn's life - physical medical problems,...
linzee_carroll
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Jun 20, 2007
4:52 pm

I would have to agree with Jeremy. I took alot away from the parents "outbreak session". I would pesonally like to here Amy's parents speak if at all possible...
Ms Reckless
msreckless_1
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Jun 20, 2007
6:37 pm

Stell, I would like to say that you are 100% correct. There is no other child "like" Carolyn. When my son, Nathan, was diagonosed with 11Q- the doctors told...
Ms Reckless
msreckless_1
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Jun 20, 2007
6:38 pm

Stell actually brought up a good topic too with insurance struggles and what about other possible organizations that might help our children. We actually are...
Jeremy Pyle
dad_11q
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Jun 21, 2007
1:30 am

I would also love to get involved. My daughter is 1 1/2 and she was diganosed at birth with JS. She is a very smart little girl. She is 6 months behind and in...
Work At Home
mommy2lissa
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Jun 20, 2007
4:32 pm

Due to great conflict with our public school system over what is an appropriate placement and services for Carolyn- Rich and I have found a website we believe...
Syretz Family
syretz@...
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Jul 8, 2007
2:33 am
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