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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 Physical, Occupational, Speech Therapy and also has a teacher that comes to the house. She does have cardiac problems. I would love to help in any way that I can.
----- Original Message -----From: Syretz FamilySent: Wednesday, June 20, 2007 8:11 AMSubject: Re: [11q_disorders] Topics for 2008 Conference
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 I would love to get involved.Stell SyretzManassas.VA----- Original Message -----From: Jeremy PyleSent: Tuesday, June 19, 2007 8:08 PMSubject: 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'll give it some more thought.
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