Wheels for Williams

This week (May 9) is Williams syndrome awareness week and there have been lots of events around the country this past weekend and today to raise awareness for WS and funds for the Williams Syndrome Association to help with research, educational opportunities, and scholarships for camps and conferences (among other things).
We went to an event today that was a bit different from the other events, which were mainly walks. We went to the first one two years ago, skipped last year (due to Cubby's arrival), and made it again this year. This event was a cruise-in (called "Wheels for Williams") with lots of older cars and things with wheels.

There was even a little hot-rod that Buddy tried out.

And Buddy and Daddy checked out the cars and the fire engines.

A fun time was had by all. We're looking forward to next year!

WS Awareness Week

If you're friends with me on Facebook, it's likely you'll have seen a few status updates wherein I have endeavored to spread awareness about Williams syndrome this week. The main reason for having a "week" of awareness is to provide a concentrated effort to enlighten people about the disorder so that a diagnosis can come sooner rather than later (should one be needed).

Believe it or not, I've met several people with WS who weren't diagnosed until later in life--teens, thirties, etc. The earlier a diagnosis is given, the earlier therapies can start, medical treatment can be given, and parents can get relief by finally knowing what's "wrong" with their child.

I don't feel the need to say too much more about Williams syndrome here since, if you've been reading for some time, you're already aware that our son Buddy was diagnosed with the genetic disorder in August of 2009. And you've followed along as we've dealt with the issues related to WS. And you'll know my answer to the question, "did God create Williams syndrome?"

However, in the event that you're new to the WS universe (about 1 in 10,000 babies are born with the disorder and currently about 30,000 individuals are living with it), here's a link to a site that gives a brief overview of it.

And no, we're not concerned that waiting-to-be-born Cubby will also have the disorder. In most cases, it's caused by a spontaneous deletion on the seventh chromosome at the time of conception--it's not an inherited disorder. Since Cubby has chosen this week to enter the world, we won't be attending any of the WS awareness events this year, so I won't have an opportunity to blog on them. We'll look forward to doing so next year, Lord willing.

Mowing the lawn

We've been inundated with rain lately and today was the first time Husband was able to get around to mowing the lawn.
Buddy watched from the windows for a bit and then we decided to go outside and see what was what.

One of the symptoms of Williams syndrome is hyperacusis -- ultra-sensitive hearing. I didn't think Buddy was experiencing this aspect of WS until a few months ago when he began putting his hands over his ears in various situations, which don't, to me, seem loud or auditorily annoying.

He walks into his daycare class with his hands over his ears, expecting the little girls in his class to be loud. When we stopped at a restaurant the other day, a little girl said, "I know that boy -- he goes to my daycare. He puts his hands over his ears like this [she demonstrated] when it gets too loud."

And this evening, he chased Husband and the mower with his hands over his ears.

Some WS kids wear a special type of earphones because their hyperacusis is so bad they can't handle the sounds of a normal day. I don't think we're quite there yet but we'll see what the future holds. In the meantime, Buddy did enjoy watching Husband and our neighbor mow their respective lawns, hands over ears and all.