Wednesday, February 11, 2009

How's Your News?



Sure you do.

Recently I received a vague message from the Williams Syndrome Regional Chairperson to tune into MTV on Sunday night because there would be something about Williams Syndrome. Now, a rationally thinking person would have thought, "what the heck could MTV possibly have to say about Williams Syndrome?" But as we all know, I am a parent, and when it comes to your children, parent's don't always think rationally. The fact that MTV isn't necessarily known for its journalistic integrity eluded me as I sent text messages to everyone in my address book to tune in at 10:30.

I'm not completely dense, I assumed it would be some sensationalized documentary about a teenager with WS who was looking for a prom date or some young 15-year-old parents who had a baby with a genetic disorder, but I was still surprised to find that the show, called "How's Your News" is a news show where all seven reporters have different disabilities such as Bobby and Sean who have Down Syndrome, Larry with spastic cerebral palsy, and Jeremy, Lucas and Brendan who all have Williams Syndrome.

The HYN website states:
"How’s Your News first began over ten years ago at a summer camp for adults with disabilities in Massachusetts. We were working in video class and searching for a format which could include as many people, with as wide an array of disabilities, as possible. So we began making our own news shows."

Apparently, the show started as a documentary which was financed by Matt Stone and Trey Parker (creators of South Park), has won several film festival awards, and has been broadcast on HBO and PBS. In 2006 they pitched the idea of a series to some networks which is when our beloved MTV decided to finance a pilot and 6 episodes.

The first show featured the HYN team on their tour bus doing interviews with the band Plain White T's, picking up John Stamos as a hitchhiker, interviewing residents on Venice Beach and approaching celebrities on the red carpet at the Grammy's. Jeremy Vest, who has WS got a lot of airtime in the episode. He was really cute and funny. He's a drummer and asked all the celebs he talked to about the drummer in their band. When you think about it, a beat reporter/interviewer is probably a great career for a person with WS, whom often have little social inhibitions and flowery conversation.

So as a parent with a child with WS, what do I think? If this show was on any network OTHER than MTV, I might be more able to accept this. But when I look at MTV's Sunday night lineup, and see that How's Your News fall somewhere between The Girls of Hedsor Hall (where America's rowdiest girls will be sent to prim-and-proper England for a complete transformation) and Real World Brooklyn, well, I start to question their motives. If the show was on let's say A&E, PBS, maybe Bravo, HBO or even a prime network, although I'd still be skeptical, I'd be more likely to believe that the show is actually meant to bring about some kind of understanding and acceptance, instead of just making fun of people. I don't want to stereotype, but when you think about MTV's target audience, its hard to believe the same folks that are into Real World/Road Rules Challenge, are going to be the ones donating to the Williams Syndrome Association. Just saying.

For now the jury's still out, I've only seen one episode, but watch the show and let me know what you think. Next show is Sunday at 10:30pm. Right after Nitro Circus (a stunt show modeled after Jackass). Ha.

Let me clear this up...Its not the show or the group that I have issues with! In fact I think that the group is phenomenal. I LOVED Jeremy Vest in the episode I saw. I was very emotional and literally crying tears of joy, seeing a kid with Williams Syndrome on TV. That part I think is amazing.

I guess I was feeling more like MTV was using the group and the show as purely comedic and setting it up to have people view it in the wrong context - one where people would be laughing at their disabilities instead of appreciating the differences. As a parent of a child with a disability, that bothers me somewhat. On one hand, yes I think its terrific that networks like that are having shows with different kinds of kids and adults, on the other hand, like I said before I question the motives of a network that is kind of known for sensationalism.

"Ditto" (thanks aunt Valerie!)

You think Old Navy had Amina in mind when they made their latest line of pajamas?

Thursday, January 8, 2009

Parenthood Lesson #4


Sure they were there supporting you through your pregnancy, helping to pick out baby furniture and cooking you dinner when you had strange cravings. They went to doctor's appointments and were at the hospital when you were in labor for 24 hours. But once the baby comes, they switch allegiance and you are left on your own. The worst part is they will never truly admit it. They PRETEND that they're STILL on your side, and when you call to rant and rave about the baby, or when they visit and you have to reprimand the baby for something, you THINK they're going to agree with you but in the end you're caught off guard by their double-crossing response! They give your kids ice cream when you tell them they have to have fruit. You tell them to buy the $14.99 Elmo, and they buy the $49.99 one instead. You tell them the baby can feed herself and they nod and smile and then soon as you leave, there they are feeding her. You say the kid is in a bad mood and they ask, "well what did YOU do to her???" And there you are, left wondering if these are the same people that raised you. I don't get it.

Happy New Year From Amina!

Amina is growing by leaps and bounds and her father and I marvel at her accomplishments everyday. She's running around the house, getting into things she has no business bothering, ignoring me when I say "no, no!" and making a new mess of things I just cleaned up - a true toddler in every sense of the word. She's starting to talk in her little husky voice and her arsenal of words now includes: "Akbar", Amina (which she loves to say and repeats all day long and will EVEN annunciate it for you "Aaaaaaa - Meeeen - Aaaaaa") mama, dada, pop-pop, mom-mom, Sweets (our cat), eat-eat, night-night, hi, bye-bye, uncle, cookie and people. We have also been trying to teach her sign language, and she knows the signs for "milk" "more" and "all done" and if you think HEARING baby talk is cute, its nothing compared to those tiny hands and fingers making words to communicate with you. Its almost the most precious thing I've ever seen.

Amina's recent language development has been very interesting, as it highlights one of the central characteristics of Williams which is often advanced language development and vocabulary. This may be why she finds it easy to repeat the word "Sweets" but won't say cat "Wesley" but won't say doggie "Uncle" but won't say aunt and "juice" but won't say cup. I guess that would also explain why "Akbar" was her first word. The down side to this (of course there always has to be at least one) is that although many kids with WS have these advanced vocabularies, like their other developmental milestones, they often delayed in speech, and cognitively they may take longer to fully understand the complex words that are easy for them to pick up. She can repeat just about every word we say, so we have started to really watch our mouths around here and pray that if a bad word does slip out, its "shit" and not "m' f'er" which she will most assuredly be able to repeat :)

(If you happen to have some spare time and find yourself fascinated by Williams and language development, click here for an interesting article I found by Mervis and Becerra on Language and Communicative Development in Williams Syndrome.)

So, overall I am looking forward to a great 2009, with Amina reaching many more milestones and continuing to grow into the lovely little girl that she has truly become. Since Amina is too young to make up her own New Year's resolutions, I thought up a few for her:

1 - I will start referring to my father as Dad and not Ameen
2 - I will listen when my mother tells me "no"
3 - I will not pull OR step on the cat's tail
4 - I will sleep in my own bed EVERY NIGHT
5 - I will start eating vegetables and not just chicken everyday

I'll keep you posted on how they work out!