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Home » WSA Blog

If You Are Going to Have a Child with a Syndrome, Williams Syndrome is the One to Have

09/12/2013 - 1:52 pm |

WSA Staff

Do you watch Family Feud? It’s my son’s favorite show. In true WS style he “sort of” remembers the exact questions that got the biggest laughs from Richard Dawson, or Richard Karn, John O'Hurley, or Steve Harvey, and delights in repeating them. His favorite is “in what month does a woman’s pregnancy become apparent”?  The answer given by the contestant…. September! For many years he had no idea why that was funny, but he was sure it would get a laugh so he repeated it often.

We recently posted a Family Feud type question on the WSA Facebook page – “If you had to describe the individual with Williams syndrome in your life with one word, what would that word be?” In just a few hours more than 600 people responded – and NOT ONE answer indicated the “down-side” of Williams syndrome. And that seems to me, to be the actuality of why parents and even professionals often say, “if you are going to have a child with a syndrome, Williams syndrome is the one to have”. Is it so great that we should all be thankful that we had a child with Williams syndrome? I don’t think that any of us would go so far as to say that. No one wishes to have a child that will have medical and educational challenges, no matter how great the “upside” might be. But how fortunate is it for us and for our children that the “upside” of Williams syndrome goes such a long way toward balancing the struggles – that within a very short time of hearing those words and not being able to imagine how they could possibly be true, we often find they are.

Even though our lives have been changed forever, and our dreams for our son or daughter will have to change, in the long run, the positive aspects of Williams syndrome will outweigh the hurdles that our children must overcome, as well as the challenges and frustrations that we face as parents.  And the next time that we are having a really difficult day, whether that be with doctors, teachers, or even friends who just don’t seem to “get it” or with our children who are at a particularly difficult stage, it will help to remember that when asked for one word to best describe an individual with Williams syndrome, 600 parents, relatives, friends and individuals with WS themselves responded, and that the top 10 answers on the Board were: Amazing…Awesome…Loving…Joyful….Blessing….Beautiful… Precious…

In fact, each of the 605 responses was very positive in nature. Despite the kind of day they may have been having today, or might have had yesterday, no one responded with challenging, or devastating, or painful. That’s not to say that if we had asked for 10 words to describe individuals with Williams syndrome, some of those words may not have crept in, but in my mind, at least, it’s a true testament to our children that the first words that come to mind are all positive, and go right to the core of who our children are and the impact that they are having on their world.

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Position on Inclusion

The WSA upholds the following positions on inclusion. We believe that: 

  • everyone benefits when individuals with WS are meaningfully included in educational, work, and community settings 
  • individuals with WS should receive all necessary supports and services to fully participate in their family lives, communities, and society as a whole
  • high expectations should be the norm, and individuals with WS and their families should decide how they best learn, work, and enjoy social settings
  • “inclusion” is not one-size-fits-all, and will look different for each family based on each individual’s desires and needs
  • inclusion creates a sense of belonging in society, meaningful relationships, and opportunities to achieve dreams

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