How's Your News?

THIS JUST IN...

FROM THE NETWORK THAT BROUGHT YOU DATE MY MOM, FROM G'S TO GENTS, SUPER SWEET 16 AND A SHOT AT LOVE WITH TILA TEQUILA, NOW COMES AN TOUCHING, INFORMATIVE SERIES ABOUT PEOPLE WITH PHYSICAL AND MENTAL DISABILITIES. THIS IS NOT MEANT TO BE OFFENSIVE FOLKS, WE JUST WANT TO "PROVIDE A POSITIVE EMPOWERING VIEW OF LIFE WITH A DISABILITY!!!"

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.

***UPDATE:
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.

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!

Back To School

AMINA'S BIG DAY
Today Amina started a new school: Best Friends Early Childhood Program at the United Cerebral Palsy Association of Philadelphia and Vicinity. Their program integrates special needs and typical children and they have a PT, OT, speech therapist and a nurse on site, so Amina can get all of her early intervention services there. Its typically a pretty tough program to get into due to long waiting lists from parents of all kinds of children eager to make sure their kids get quality daycare services and a little extra. We doubted that we would be able to get a spot until Amina was 2 or 3, but with a little prayer and a little luck they had a spot open for this fall.

WILLIAMS SYNDROME STRIKES AGAIN
Since it was the first day, we stayed with Amina for about an hour in the gym with her classmates and her teachers. ALL the kids were screaming as their parents tried to leave. One poor little kid screamed the whole hour. Another cute little boy was fine for a while, his dad snuck out and then about 20 minutes later when he realized he was left alone, he tried to make a run for the door out the classroom. Amina sat and looked around at the kids, and looked at us with sort of a concerned look on her face. She gravitated towards the little boy who cried the whole hour and kept trying to reach out and touch his head and his face. It was so sweet.

WORKING MOTHER GUILT
Amina is not the only one going back to school. Last year I decided that I wanted to go back to school for my doctorate. It was in the midst of us dealing with all of Amina's issues, so I wasn't sure if I was going to apply or wait for a "better" time (whatever that is). I ended up applying, just figuring that if I didn't get in, it wasn't the right time, and I would wait a few years and try again. Well, I DID get accepted so I am preparing to start school next week.

Lately, I have been feeling a lot of fear, anxiety and guilt about going back to school. When we started to sort out all of her medical issues, I took a job working part time so that I would have more time for her. I was going to the hospital at least 2 but sometimes 3 or 4 times a week for tests, therapy and other appointments so there was no way any employer would be able to accommodate me as a full time employee. Her appointments have lessened, and I have started to take more hours at work. With Amina at a school where all of her medical and developmental needs can be met, I think I will feel more comfortable being away from her, but I still wonder if I'll be able to do it. Time is already spread thin and when I am away from Amina I miss her and worry about her.

I hear its typical that working moms sometimes feel guilty about the time they have to spend away from their families and I know there are a lot of parents in my situation, but its just hard. I know that in the long run, getting and advanced degree will be better for our family, but right now it means less time at home and more expenses. Its was to the point that I was actually considering NOT going back. My husband thinks I'm crazy to turn down an opportunity to study at one of the best schools in the country, but sometimes I feel like maybe that degree is just another piece of paper and time away from Amina is what really matters.

BUT I DIGRESS...
This blog is supposed to be about Amina! Sooooo, for her first day, we stayed about an hour to help her (us) feel comfortable with the new environment. But after about 20 minutes, Amina reached out for one of her teachers, gave her a hug and turned around and waved "bye-bye" to us. Before we left we (I) went into a loooong spiel about how she only eats mashed potatoes and oranges and how she doesn't like to sleep, and how she'll never stay still on her cot to take a nap. Of course she made a complete liar out of us.

My little girl is growing up and I'm not ready for it!