Meet a Child with Williams
GEMSS would like to thank Zhala and her mother for their generosity in sharing this story with us. You have made the site come to life with the addition of your thoughts and feelings. Thank you so much!
At age 7, Zhala (pronounced Jah-la) can hear a song once or twice and then sing it, even in another language. “She is a 100% musical child,” says her mother Vanessa. At family gatherings where many family members play guitars, Zhala will try to play their instruments. She has listened to her Kurdish grandfather’s music on YouTube which is sung in his native language and she can sing it well after listening only twice!
Zhala is an extremely friendly child and usually quite happy. She is much loved at school and is surely missed if she misses a day of school. In fact, her teacher described her as the “glue of the classroom” because she knows the name of every child, calls them by name, and greets each one.
Her school experience has been phenomenal. She is in typical classes and her therapists come into her class to do therapy. “Math is her strongest subject, which is contrary to what children with Williams syndrome typically experience,” says Vanessa. Reading comprehension is a top priority, as is strengthening her social skills so that she has good solid friendships. “She is not isolated in any way,” says Vanessa who is very pleased at how her school team has supported her in the classroom.
Vanessa tells how the team has earned her trust. When Zhala’s eating didn’t go well on the first day of school, her case manager called home that very afternoon after receiving an email from Vanessa. They developed a communication notebook and started using it the very next day, and continued all the way through the end of the school year.
Her team also problem solved how to get Zhala into the gymnasium, which was so noisy that she couldn’t step foot inside. They slowly desensitized her by having her watch through the window, then go inside for 5 minutes, etc., progressing until Zhala could go in for full gym classes.
Zhala’s parents became concerned with her development when she was about 6-8 months of age. Her pediatrician suggested waiting for testing until she was 12 months old. At that time, Zhala was referred to Early Supports and Services in New Hampshire (early intervention). Around that time, she saw a developmental pediatrician who saw developmental delays. After the visit with the developmentalist, the family took some time to adjust to a possible disorder. Within a month or two, the family decided to move forward to see a neurologist and geneticist. During her first year, from 9-12 months of age, she failed to gain weight and they found out she had a gastro-intestinal infection. She was then treated by her GI specialist. GI issues continue for Zhala, but she is highly monitored for feeding/swallowing issues as well as to assure weight gain and other GI concerns.
Zhala was diagnosed with Williams Syndrome at 22 months. But like all children, Zhala has brought much light and joy into her family’s life, and she can make just about anybody smile. Zhala needs to see several specialists every few months for monitoring of conditions which are common to Williams. However, Zhala is doing well, and at every visit, the staff knows her by name and greets her with gloves that she asks for every time. At this time, Zhala is in good health, and her various health issues are within normal levels.
Vanessa, who is an educator, shared some great tips for Parents, Teachers, Nurses and Therapists:
- An invaluable tool is a daily communication log which highlights any issues or news in her school or home routines such as eating, behavior, or toileting.
- Seeing her teachers daily is a wonderful luxury because she drives Zhala to school and picks her up. If that is not possible, she suggests emailing or writing frequently.
- Go into school with a good game plan, be open about significant concerns, and make sure concerns are addressed in a reasonable amount of time.
- Vanessa brought in information from the GEMSS website as a place to start the discussion
- Then she told them about features and issues that were unique to Zhala and listed their priorities for her education.
- An example: the school was not completely fenced in so they discussed how Zhala, being so friendly, might walk off with anyone.
- Discuss issues that could be big problems, like sensitivity to sound. For example, they had to have a plan for fire drills because Zhala is so highly sensitive to noises that a fire drill would scare her tremendously.
- If something doesn’t feel right, be an advocate and don’t worry about being a complainer.
- Music can be so beneficial to help with cognitive skills. For example, Zhala’s teacher has had great success teaching math facts by singing them with Zhala. “Music is a great motivator and cognitive tool for lots of kids,” says Vanessa who has done a lot of reading on the topic.
- Music therapy can also be a great addition to the IEP and help students make greater achievements in their education.