Monday, May 9, 2011

Williams Syndrome Awareness Day 2: Heart of Gold


Today is Day 2 of Williams Syndrome Awareness week and Day 2 of my 7-day series on Williams syndrome (WS). Yesterday, I posted about heart difficulties that are characteristic for people living with WS.  Today, I'm going to write a little about how despite cardiovascular problems, individuals affected by WS have a heart of gold.

If you follow me regularly, you might remember my "Joyful" post following Easter. I wrote about Bean's sheer delight with all the attention he received. One of the hallmark characteristics of WS is a highly social personality. They are exceptionally friendly, are easy to talk to, empathetic and endearing. When I talk to parents of older children and adults with WS, I am told that they are incredibly popular and everyone just adores them. Without exception.

One really interesting fact is that some research has been done on children with WS and propensity towards racism. The result? Their outgoing personalities and lack of social anxiety, no doubt genetically based, means that they do not discriminate based on race. Could they be missing the racist gene? If so, how great is that! You can find summaries of the study here and here.

People with WS can be so outgoing and trusting, though, that there are some safety concerns for parents. It is not uncommon for children with WS to approach strangers, tell him/her that they love him/her and offer a hug.  Individuals with WS can have difficulty with social cues and boundaries which can, at times, lead to feelings of isolation.

Bean most definitely has this gregarious and charming personality. He never went through "stranger danger" and craves the attention and affection of everyone that he encounters. 

When he was very young, he refused to be put down. He wanted me to hold him and interact with him all. the. time. I now know that this wasn't him being difficult, rather it was an intense need for human contact and interaction.

Every where we go, he smiles, giggles, clicks and trills with anyone that makes eye contact with him. And these people are so charmed that they can't help but smile, giggle, click and trill right back at Bean.

Today, we had his entire therapy team at the house for his annual evaluation. His greatest area of strength, by far, is social interaction. And the talk revolved around how he is the sweetest, friendliest, "flirtiest" little boy that they had encountered and I don't think that they were just saying that but I may be just a little biased.

One of the things we discussed is how we will start to deal with safety concerns once he is more mobile and independent. In an effort to reduce any possible feelings of isolation, I have every intention of surrounding him with people that love him and enjoy his affection as much as he enjoys giving it and I will afford him every opportunity possible to interact with other children his age that have WS. The Williams Syndrome Association does a fantastic job of getting WS families together at conventions, camps, walks and various events all year long.  I will do everything possible to further promote his beautiful personality as a true strength.

Tomorrow, I will touch on a few other strengths like musical ability and challenges in the form of developmental delays, intellectual disabilities and sensory integration difficulties. Please follow along to learn more about Williams syndrome and how if affects my amazing son and others like him.

5 comments:

  1. You aren't biased, You are blessed! My 2 1/2 Grandson Robbie is such a joy to be around. The look of compassion that he gave to his crying friend at school was quite touching! I'm looking forward to the jpy he will continually give me all of my life!

    ReplyDelete
  2. Marie - Thanks so much for your comment. You are so right. Our kids are amazing and such a blessing!

    ReplyDelete
  3. He is a beautiful boy, inside and out. What a lucky kid to have the family he does.

    ReplyDelete
  4. Great post! I have learned so much about Ws from you and Jess H., too. I just put up a blog post for Williams Syndrome Awareness Week. :-)

    ReplyDelete
  5. Thank you, Shan. :)

    Thanks so much, Becca! I'm off to check it out right now and I'll post a link for my friends on facebook to check it out, too :)

    ReplyDelete