The Randomness of Me

You’ve probably never heard of Williams Syndrome.

The only reason I have is because my favorite 5 year old was born with the genetic disorder, which is so rare it only occurs 1 in 20,000 births (unlike Autism which occurs in 1 in 100 births). When she was born, at first her parents didn’t know anything was amiss. It wasn’t until she was four or five months old that they started noticing she wasn’t progressing developmentally and brought her to the doctor’s to figure out what was going on with her.

She went through a lot of testing before a FISH test discovered that she, like all people with Williams, has a problem with her 7th chromosome. Thanks to her parents dedication, great doctors, and her mom and dad finding a Williams support group & center in their city, she is doing quite well.

“A” exhibits some of the classic Williams characteristics - she’s got impish facial features, her hearing is hyper sensitive, she’s got prominent lips, and her speech development was delayed. It took her longer to learn to walk, she has some learning disabilities, and, like many with Williams, loves music - but not if it’s too loud. She also simply loves to shake her little tail feather on the dance floor.

You may have seen the episode of Law & Order where a little girl had Williams or the profile on Dateline (or maybe it was 20/20). Honestly, these are the only times I’ve heard of it in the mainstream media.

One thing you immediately see in people with Williams is how open they are with everyone. It’s called the “friendly syndrome” because for some reason people with it are not afraid to approach others and want to well, make friends. “A” wants to bring everyone home and will smile at folks and ask them their names no matter how many times her mom tells her that she can’t talk to strangers. Once a year or so ago, they were out and ”A” strikes up a conversation with this guy. Her mom tells her, “You’re not supposed to talk to people you don’t know.” So “A” turns to the guy, asks him his name, then tells her mom, “I know him now…ok?”

“A” started school at the right time and has been fortunate to attend ones that, for the most part, accomodate her needs. It takes a while though for people to understand what her needs are even when her parents explain Williams and provide them with information on it.

She will in all likliehood need some kind of social support throughout her life even though some people do live on thier own and are self-sufficient as adults. A downside of the syndrome is that people with it tend to suffer from cardiac and other health issues that can affect life expectancy.

I am telling you about Williams because as a rare and not frequently talked about illness it does not get the attention that disorders like Autism and Down Syndrome do and therefore does not garner the kind of research funding of these more common disorders.

What can you do? Learn more, donate to reasearch, tell others about it.

Here are links to the Williams Foundation and the Williams Syndrome Association.

Throwback Thursday is back with an oldie but goodie sure to get you singing… 

Come on and Zoom Zoom Zooma Zoom…

Every week my cousins, brother and I would gather aroundthe one-eyed monster and fall into the whacky world of seven kids on a mission to make learning fun. They did. We spoke UbiDubbi and tried all the tricks - human airplane, bottle rocket…you name it we did it…we even sent in a letter to Ooooh Twooo Onnne Threee Fooouuurrr…

Zoom embraced multi-culturality and provided a space to let kids be kids…the first cast was one of my favorites. As seasons changed so did the faces of the Zoom gang, but we always knew that no matter who was on that year, they’s bring fun right in to our living room…remember…

Fatherhood means being there to make a meal…

Hey dad, let’s play…

Good dads join in the fun!

Jump in, be a good dad…

Hey Dads - just be there…

Happy Father’s Day!

Today is father’s day.

I can honestly say that one of my heros is my dad. He hasn’t always done everything right but he’s always been there. My dad taught me things about commitment, loyalty and good works that have become a part of how I choose to live my life. So, here’s to all the dads, but especially the ones like mine: the ones you can laugh with and who make you do your homework, set curfews and give hugs. The dads who help bring up their kids and take on the responsibility of shaping crazy kids like me into caring adults…

Today’s posts are in honor of dads everywhere. It doesn’t take much to be a good dad. All your kids want is your time and attention. Take a few minutes - spend some time, play with them, read to them, help them with their homework…while parenting is hard being a good father is easy…

Jack & the Beanstalk as told by 2 year old…this is hilarious and someone needs to sign this kid up now…

Thanks Makenna!

Thursday Throwback

Hey kiddies! I didn’t forget - here’s your flashback for today…

Sunday mornings before church was Wonderama time…my brother, two cousins (who lived downstairs) and I would corral around the TV and hang out with ginger topped Bob MacAllister…turns out he was ahead of his time - “Exercise” got us all up and moving, pissing off our moms no end cause press and curls became afro puffs…