Tuesday, May 10, 2011

Williams Syndrome Awareness Day 3: Complexity


Most, if not all, children with WS have developmental delays. They smile, talk, giggle, and walk later than most other children. But they do eventually achieve these milestones in their own time. Additionally, 75% of adults with WS are ultimately diagnosed with some degree of intellectual disability. Fine motor, spatial reasoning and math tend to be areas of difficulty for a lot of adults with WS. People with WS also often have some sensory integration issues such as texture/feeding difficulties and hyperacusis (sensitivity to certain sounds/frequencies). A combination of physical, occupational, developmental and speech therapy can help overcome or lessen these difficulties.

These same people also have striking strengths and abilities. Yesterday, I wrote about the exceptionally social, empathetic and endearing personality associated with people with WS but that is not the only amazing thing about WS. While it's true that children with WS become verbal later than other children, speech becomes a strength and these children and adults are known to develop very strong verbal abilities. They also develop a strong affinity for music and many posses exceptional musical talents. The WS population is known to be much more likely than the general population to possess "perfect pitch." This is likely related to their hyperacusis.

It's amazing to see these complexities at work in my own son. He most definitely has developmental delays. His greatest areas of strength are social interactions and gross motor skills. He struggles most with fine motor skills, motor planning and speech. 

In terms of sensory integration, Bean seems pretty typical for a WS kid. He has extreme textural and feeding issues. He has made some progress with texture - he is now tolerating crunchy meltables like puffs and veggie straws - but struggles immensely with many foods and textures. For example, he gagged yesterday just from touching an ear of corn. Today, when we were playing in the yard, he could not touch the grass with his hands or feet without melting down. I'm am also starting to suspect that he has some degree of hyperacusis. Wind is extremely problematic for him and certain sounds really seem to bother him. He also seeks vestibular sensory input like deep pressure, rocking and being upside-down. 

Bean is not yet verbal but he does have a strong ability to "communicate" and relate to others. He is also very, very interested in music. We often use music as a tool to soothe him and it is a strong motivator when he eats (mommy or daddy will sing a song when he takes a bite.)

Not one person can be defined in absolutes and people with WS are not an exception. They are complex individuals with a fascinating combination of challenges and abilities. Bean surprises and amazes me every day.

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Stay tuned for Day 4. On Sunday, I discussed the characteristic heart problems associated with WS. Tomorrow, I will address some of the other health 


4 comments:

  1. So I suppose we'll never be able to meet. You may already know I can't sing (and that I don't let that stop me from bursting into songs at seemingly random moments). I'll just confess right now that the occasional person may have called me a windbag.

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  2. Ha ha! I think a meeting is still possible - I can't sing either but Bean doesn't seem to mind! ;)

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