Having been lucky enough to grow up with a family member with Williams Syndrome, it’s almost difficult for me to describe the diagnosis when asked what it exactly it is. My cousin’s diagnosis, although more defined in our adult age, was never a concern, topic of conversation, or even differentiation for me while we were growing up. When I picture my cousin, I picture an encouraging, social, outgoing individual with a love for family gatherings, music, and time with her friends. I think of her phenomenal skill on the piano and the computer and how her Facebook friends exceed mine by the hundreds! When she and I are out in public, I am never surprised that she is able to name people who she has not seen in years, and more importantly, they always remember her!
If you ask a medical journal the definition, it would tell you that Williams Syndrome is a genetic condition found in males and females, affecting about 1 in every 10,000 individuals born worldwide. Many children diagnosed with Williams Syndrome suffer from cardiovascular issues and global developmental delays. Like most genetic conditions, there is a range of skills and circumstances determining the learning capabilities of each individual with Williams Syndrome.
Children are most often diagnosed by recognition of classic facial features. It is typical for children with Williams Syndrome to have a broad forehead, a shorter nose, and full lips. They tend to be shorter in stature and can have a wide variety of visual concerns and often suffer from hyperacusis, or extremely sensitive hearing.
Parents often report that their favorite quality of their child with William Syndrome is their upbeat and outgoing personality. They are kind, welcoming and happy to meet new people. Children with Williams Syndrome often attend mainstream schooling, hold jobs, and live well into their adult lives with the support of their family and community.
How does Williams Syndrome fit in Early Intervention?
Due to the delays that frequently occur in children with Williams Syndrome, feeding (occupational therapy) and developmental therapy is often required. Since children with Williams Syndrome are usually extremely social, speech therapy may also be provided in order to promote appropriate communication at a young age. In early intervention, our belief is that the earlier a child receives services, the greater the effect. Therefore, upon receiving a diagnosis such as Williams Syndrome, the physician will often refer to early intervention. We hope you’ll feel encouraged to begin early too!
For more answers to questions about Williams Syndrome, visit: https://williams-syndrome.org/
By Lauren Russell, M.Ed.
Photo by Kelly Lester Photography