My son has williams syndrome. He is 12 years old ( or will be in August). I have been having a lot of problems with him lately and am in desperate need of assistance. My mom found this site and suggested I try it.
My name is Barbara and I am in Tucson, Arizona visiting my U of A student son, who is also has a C4 spinal cord injury since 2003 at the age of 25. One of his caregivers, Lupita, has an 11 year old son, Jose, who has been diagnosed with Williams Syndrome. Lupita came here 8 years ago from Mexico seeking help for her son but found no help in Tucson - she speaks hardly any English which could account for her problems finding help. This precious boy 11 year old boy is the size of a 5 year old, and is also deaf and partially blind. I cannot sleep knowing this boy is getting no help and have set up an appointment with the Department of Developmental Disabilities in Tucson - but since Jose was born in Mexico I am worried he will be rejected. She found no help in Mexico and is here on a visa, but I am hoping someone out there can help. She has no insurance and this boy is withering away. Any input will be greatly appreciated.
(I didn’t know CP was going to post this publically as a message so I edited it.)
My name’s Issac. I’m in my mid 20s.
I came upon this syndrome by accident. It also turns out my favorite actress might have it. While the negative effects are sad, the strange benefits of WS are fascinating and it’s something I’ve taken a serious interest in.
I’m very curious (which so far has only served me like a cat) to meet some people with Williams syndrome. Online, of course.
hi my son pierce will be 5 on july 2 pierce has williams syndrome
I am applying for a job where I will work with a 9 year old child who has Williams Syndrome. I would like to know more about this and the effective methods on how to help her improve and eventually qualify for inclusion.
we just learned our child had williams syndrome
My one month old son has been diagnosed with William’s syndrome. Other than that diagnosis, and what I’ve read at the William’s Syndrome Association website, I really have no idea what to think right now.
My wife and I adopted Scott at birth. It was an open adoption; the birth mother chose us to be the adoptive parents. To our surprise, two days before the birth, we learned she smoked during pregnancy (her file said she was a non smoker). It was only after Scott was born that we learned though toxicology that she was smoking something else as well. We truly believe that our son was meant to be safe and happy and healthy in our family.
At his first visit to our Pediatrician, she heard a heart murmur and sent us to a cardiologist. He discovered a pulmonary stenosis and sent us to a geneticist. She conducted a FISH test for William’s syndrome and the result was positive.
My dear wife is quite upset, of course. I am too, but being the religious one I can place my trust and cares in the unknown to Providence. Still, I have many, many questions and concerns. When I was a teen I was diagnosed with a condition and for fifteen years thought I was the only one, so, I’m comforted that these days there are so many opportunities to “network.”
My niece is 24 years old and lost her mom, my sister, in Sept of 2006. We are doing our best to care for Sarah, and need the support of others and access to any and all helpful information. Thanks. Emma
Hi,
We have a 2 year old daughter who has been diagnosed with William’s Syndrome at 4 months old.
Hi, My name is Heather. I am 32 y/o. I have 3 children. My middle child was just diagnosed with WS in December. He is nine years old. I hope to connect with others who have children close to his age so we can share experiences, tips, tricks, and advice for school, and daily life.
Hi Heather, I would suggest you try the listserve
(http://www.williams-syndrome.org/community/listserve.html) on the Williams
Syndrome Association (http://www.williams-syndrome.org/) website. As well,
Yahoo has a similar Williams Syndrome Listserve that is not as active
http://health.groups.yahoo.com/group/williamssyndrome/ but has been more
active than normal lately.
Both places provide a great network to both follow other peoples experience
as well as submit questions to other parents.
As well, the Williams Syndrome Association has various regional chapters
(there is a similar association in Canada (we are actually Canadians)) that
hold regular meetings/get togethers.
I hope that helps,
Bruce
-----Original Message-----
From: Heatherf [mailto:wiliams-syndrome-cpt2538@lists.careplace.com]
Sent: Friday, October 05, 2007 10:15 AM
To: bfisher@rogers.com
Subject: Re: [wiliams-syndrome] William’s Syndrome Member Introductions
Thanks Bruce,
I do belong to the list-serve and several other groups as well. It’s been really crazy to ‘meet’ all of these people with kids like mine. We spent a long time knowing something was different about him, but couldn’t put our finger on it. Anyway, I am interested to hear peoples stories about their school-age kids with WS. Schooling is the area of most concern with my son right now. I have been having trouble with the school, and have been considering homeschooling. I would love to hear experiences, opinons, etc. Heather 
Hi Heather- I would encourage you also to check out the yahoo group. Much more active-
Steven> To: stevenmenna@hotmail.com> From: wiliams-syndrome-cpt2538@lists.careplace.com> Subject: Re: [wiliams-syndrome] William’s Syndrome Member Introductions> Date: Fri, 5 Oct 2007 10:15:23 -0400> >
Hi Heather my name is Shawnia I have a 12 yr old son with williams syndrome. He has been in the public shool system since he was three years old. Where we live there is a great school system for children with disabilities. Kahle has been a joy in our life, he has taught us to be grateful for the simple things in life. This has been a learning experience for me and my family. Kahle was diagnosised with WS when he was 4, we have seen a lot of doctors in that past few years. Thank GOD Kahle is very healthy. He is in a life skills class that has been great for him. He is the most social person that I have ever met. This scares me, but I know that is who he is so I keep an extra eye on him at all times. I don’t think that he has ever met a person that he doesn’t like. At fist the doctors told us that he would never read or write or do simple math. Kahle is reading on a 2nd to 3rd grade level he can write well and he is currently working on
counting change. I think that he has taught me more than I could ever teach him.
Well, Heather I need to run I hope to talk to you again soon. Good Luck. I would be happy to share our life with you. Kahle is a wonderful guy and his life has been full of adventure.
Shawnia
----- Original Message ----
From: Heatherf wiliams-syndrome-cpt2538@lists.careplace.com
To: s_scrimsher@yahoo.com
Sent: Friday, October 5, 2007 9:15:23 AM
Subject: Re: [wiliams-syndrome] William’s Syndrome Member Introductions
I want to know more abour williams syndrome. can you
enlighten me?
— mom2kman95
wiliams-syndrome-cpt2538@lists.careplace.com wrote:
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text below this line will be cut off in your replyHi Heather my name is Shawnia I have a 12 yr old son
with williams syndrome. He has been in the public
shool system since he was three years old. Where we
live there is a great school system for children
with disabilities. Kahle has been a joy in our
life, he has taught us to be grateful for the simple
things in life. This has been a learning experience
for me and my family. Kahle was
diagnosised with WS when he was 4, we have seen a
lot of doctors in that past few years. Thank GOD
Kahle is very healthy. He is in a life skills
class that has been great for him. He is the most
social person that I have ever met. This scares me,
but I know that is who he is so I keep an extra eye
on him at all times. I don’t think that he has ever
met a person that he doesn’t like. At fist the
doctors told us that he would never read or write or
do simple math. Kahle is reading on a 2nd to 3rd
grade level he can write well and he is currently
working on
counting change. I think that he has taught me
more than I could ever teach him.Well, Heather I need to run I hope to talk to you
again soon. Good Luck. I would be happy to share
our life with you. Kahle is a wonderful guy and
his life has been full of adventure.Shawnia
----- Original Message ----
From: Heatherf
To: s_scrimsher@yahoo.com
Sent: Friday, October 5, 2007 9:15:23 AM
Subject: Re:
[wiliams-syndrome] William’s Syndrome Member
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Cordova, I am the mother of a nine year old boy with WS.
I can tell you where his issues are when he goes out to inclusion and maybe this will help you prepare.
Calebs biggest issue is his distractibility. He needs an aide to help keep him focused. There was a time when he had a lot of anxiety between transitions. A picture schedule comes in very handy when it comes to transitioning. Just a visual reminder to cut down on the anxiety. Also, there was a time when he would wander off on his way to a class, and the staff would find him in the lounge with a stack of books. So, not getting distracted on the way to classes was a big one for him as well.
I also think it would be good to find out about modifying the work that she will be doing during inclusion. Talk to the teachers before hand and find out what will be acceptable. Such as during a test, someone could read the questions for her, and then write the answers as well. Stuff like that. Sometimes our kids know more than they can show. They tend to learn best when writing isn’t involved with what they are learning.
As far as behavior, it was recommended for me and school to use 1,2,3, time out. It is a good idea for home and school to use the same method, whatever it may be. That just helps the child understand that the same rules apply at both places. Plus the kids with WS seem to really dislike a time out away from the other kids. I hope this helps a little bit. There is a section on the WSA website that could help. www.williams-syndrome.org
under the ‘for teachers’ tab. Also the WSF has a lot of good info. www.wsf.org ~ Heather
My name is Barbara. I found this website while helping my friend Lupita who has a 12 year old son with Williams Syndrome. Lupita is in Tucson, Arizona and is caregiver to my son who is a quadraplegic. Her son, Jose, is also blind and deaf - is has truly been a struggle. But I know she would like someone to talk to. I have helped her get help in Tucson at the blind and deaf school - but she doesn't speak much English and it has been a struggle. I am looking for someone she can talk to - especially anyone in your group that speaks Spanish.
Thank you so much.
Barbara Lorenz
mom2kman95 wiliams-syndrome-cpt2538@lists.careplace.com wrote:
hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.