Williams Syndrome

Gwynn · 06-30-2006, 10:39 AM

This question was emailed to us by a viewer:

I just heard that my 5 year old may have williams syndrom. She has had developement issues since day one yet I am only hearing about WS now. I haven't heard it mentioned on your show either.

judi · 07-14-2006, 11:59 PM

Dear Viewer,
I am not familiar with Williams Syndrome myself. According to Nelson's Textbook of Pediatrics, the condition occurs with a frequency of greater than one person per 10,000 in otherwise unaffected families. The cause is unknown.

Children with Williams Syndrome have a characteristic psycologic profile with relativly good verbal performance and social skills with delayed motor and perceptual skills. Additionally, certain facial characteristics such as upturned nose, small chin and large cheeks are seen. Cavities and feeding problems are common. Heart defects and calcium and vitamin D deficiences can also occur.

Working with educational and occupational professionals to build on your child's strenghts will be important. What services are you hooked up with? How old is your child? What challenges are you facing at this time?

brianne · 08-14-2006, 05:20 PM

I've heard that music therapy can really help a child with Williams Syndrome. Has anyone had experience with this?

liz · 08-17-2006, 07:14 AM

As a teacher, I have found music to be an important component of the classroom environment and curriculum for all children. Do any parents or early care and education professionals have personal experience with the the benefits of music as therapy for children with William's Syndrome or other special needs?

liz · 10-08-2006, 05:50 AM

In looking over the message board, I have noticed that hundreds of people have viewed the thread regarding Williams Syndrome. I take that to mean that many, many people are interested in this sydrome. Please feel free to log in and express your concerns, experience or what you've heard or know.

As a special needs educator, I have met many children with Williams Syndrome. However, I can't say that I have met an adult with the syndrome. If you have the syndrome or know someone who does, please share your experience.

How did adults with the syndrome do in the school system?
How is their health as they get older?
If there were behavioral challenges as children, how is their ability to socialize as an adult?

Please post your thoughts, feelings and experiences about what Williams Syndrome means to you.

Anastasia · 10-30-2006, 07:38 AM

my brother has williams syndrome, and so i've been doing a lot of research in my spare time to try and get a better understanding of what WS is and means. i found that a lot of people with WS can attend certain colleges, and many also grow up to be able to live on their own and have jobs.

I also wanted to tell all of the families out there who are just recieving the news that their brother, sister, son, or daughter has WS not to worry about it for too long, because my brother is the very best part of my life and i wouldnt trade him for anything in the world! Plus, you have so many more experiences, laughs,and you meet so many more wonderful people than other families!

10-08-2007, 08:27 PM

Hello Everyone!
I just barely heard of WS and am learning a lot about it right now. I was just wondering if any of you have had any experiences where your loved one or somebody you know with WS was mistreadted or misjudged because the other person was lacking knowledge on the subject. I am trying to write a paper and prove that the public and educators should be more educated on this syndrome so as not to misjudge the WS population and give them a fair chance in the school system. Any body have any thoughts?
Thanks a lot!

Alba · 10-09-2007, 04:19 PM

Hello
Well lack of knowledge can lead people to believe a child is just difficult or stubborn. Luckly I have not had any experiences with people being mean to a child with this particular syndrome. I hope others have not experienced such a thing but if they have I think it will be very important to see how they handled the situation. Whenever I notice someone that seems to be upset by a child I try to educate them on the child's condition and always try to see things from the child's point of view.
Alba

01-19-2008, 12:45 AM

My son has W.S and was diagnosed at the age of nine months. Started therapy at that time. He is five and doing very well and running and walking and talking.

Well I think this is pretty funny now and I felt sorry for the nurse. We were waiting to see the doctor in the waiting room. My son with W.S was crawling on the floor and he looks just as able bodied as any kid and nothing looks different about him. The nurse came out and said hey young man your too old to be crawling around on the floor like that. I just told her we were working on it but he couldnt walk yet.
Anyway I feel we are good educators for the world that be. We learn from them and they learn from us.

02-27-2008, 08:52 AM

Quote:

Originally Posted by brianne

I've heard that music therapy can really help a child with Williams Syndrome. Has anyone had experience with this?

Yes hello my name is shareena kelly and i have a son name corey he's 11yrs old and he loves music singing, dancing,and listening to music at all times of the day.