If you have a question or information to share with others, please forward your bulletin board contribution to CAWSChairs@shaw.ca. Please allow one week for your posting to appear. All submissions will be reviewed and edited as required prior to posting.


March 17, 2008
Hi, my name is April. I noticed there have not been any new postings on the bulletin board lately and I check this site often. My seven year old daughter was diagnosed with Williams Syndrome in May of 2007. To say the least, this experience has been very overwhelming. I guess I was in denial for quite some time. Right now I feel like we are alone in this diagnosis. I really want to do all I can to help her and care for her, it would be nice to have someone who is in the same situation to talk to or type to. If anyone else out there is feeling the same way please email me at aprildswilliams@hotmail.com.

November 5, 2007
We live in the UK with 4 children including a 4 year old daughter with Williams Syndrome. My husband has the opportunity to move to Canada with his work. We are wondering how our daughter with Williams Syndrome would be affected by such a move. In the UK, our daughter goes to a mainstream state school, but has a statement of special educational needs which means she gets extra help at school. We are wondering how children with special educational needs are catered for in Canada. Any advice would be appreciated. Thanks. Our email address is rob@roblewis.co.uk.

September 4 , 2007
I have a 35 year old son with WS. He was diagnosed at age 6. He lived at home until he was 17 years old. Because of his father’s death, he then moved into a group home that had four other developmentally challenged adults. I applied to the courts and become his guardian and trustee prior to his 18th birthday. I remain in both roles to this day. Since then he has lived in another group home, again with other clients and cared for by staff; a private residence, shared with another client (they shared a supportive roommate); to a rental property, with only a supportive roommate; and now to his own home, with a supportive roommate. While in the rental property, the supportive roommate approached me on two occasions to grant permission for family members to live with them for various lengths of time. I agreed to grant the request and nothing untoward happened, of which I’m aware.  The problem I am faced with now, as his guardian, is a third request from this same supportive roommate to accommodate a minor child without the mother’s permission. As a guardian, I have the right to say yes or no. Or I can say yes, but with conditions. I chose the latter and gave a period of 7 weeks for other arrangements to be made for the minor child. The supportive roommate has now decided to raise this minor child herself and wants to do so in my son’s home. I have denied that request. She has now submitted her resignation as my son’s supportive roommate. The dilemma I have now is that my daughter and I totally disagree on whether or not it is in the best interest of our WS adult to have roommates, in addition to his supportive roommate, rotating through his house staying for varying lengths of time. I strongly believe he needs structure, limits, and routines in order to achieve his full potential. I believe his home should remain the one constant in his life. Many different staff will come and go over the next few years; both at work, and at the agency we deal with. Supportive roommates will come and go as well, as their lives evolve and change. I believe my son should have a stable home that is a sanctuary for the rest of his life. I would love to hear from anyone with a similar experience. My email address is foxymom@telus.net.

February 6, 2007
Hi. I have a 14 year old daughter, Katie, with Williams Syndrome. I recently read the book by Teri Sforza called "the {strangest} song". I recommend this book to anyone who would like to know more about Williams Syndrome and is interested in exploring their child's 'musicality'. I have purchased 4 volumes and am giving it to everyone who teaches or cares about Katie to read. I feel it will really help them to understand her and help her learn. Anyone interested in conversing with me regarding Katie or the book feel free to email me at hawksby@shaw.ca

January 29 2007
I have a four year old son with WS who I would like to enroll in a sports program for children with special needs in the Edmonton area.  If you know of any organizations besides the Special Olympics (minimum age is seven) in the area, please e-mail me at laurensm@telus.net.

January 22, 2007
Hi. I have a 30 year old daughter who would like to learn to crochet or knit. Has anyone ever tried to teach a WS individual this craft? If so, please email jdreid@telusplanet.net.


 
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