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 different areas of CArolyn's life - physical medical problems, surgeries, emotional problems, medication issues, school problems, financial issues, insurance battles, etc. From what little we know CArolyn would be considered on the higher functioning side of the Jacobsen Syndrome - which like all of you has left us in a world where she fits no category, there is no answer except to tackle each issue as it arises - my greatest frustration and challenges have been because CArolyn is unique - truly no other person, even in the Jacobsen Syndrome world is "like" CArolyn - I would guess that is what all Jacobsen parents face every day....
Rich my husband is from CT - I am from GA- both our families are there respectively...we have lived in RI, NJ, VA - never near any family and have had to just figure it out
Subject: Re: [11q_disorders] Topics for 2008 Conference
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 conference that stood out to me was the personal stories told by parents. No matter what the age, genetic disorder, or the specific details that happen to that children, as parents we can learn from and be better prepared for things to come and possibly remember things we did differently in the past and be able to not make the same mistake twice. All the medical information we help gather and hear from the experts is great but I feel it is the life experiences we all share that helps us in the daily life activities.
Jeremy
Gretchenwarren@aol.com wrote:
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 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...
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...
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@...
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...
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...
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@...
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,...
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...
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...
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...
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...
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...
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