Wednesday, January 13, 2010

Amiiiiinaaaaa... Where Arrreee Youuuuuu??

Here I Am!

HAPPY NEW YEAR EVERYONE! A lot of you may have been wondering just WHAT little Amina has been up to over the past year or so...

And the answer is, walking, talking (a lot!), being in weddings, driving her parents crazy and getting cuter and cuter by the day :) I am totally in awe of this little girl and watching her grow has been the greatest experience. She's smart and funny and has a way of touching people that I have never seen in my life. She really knows how to connect with people.

For all of my friends and family that have never gotten the opportunity to meet Amina, I hope that you will finally be able to meet her in 2010. She is really a great little kid.

Facebook has sort of taken over as the main mode for communication but I'm going to try to get back into blogging. We'll see how that goes...

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!

Tuesday, September 23, 2008

Amina: Summer Review

Summer is officially over, and while that makes me a little sad, it also brings a few things I'm looking forward to: cool weather, fall foliage, hayrides, Thanksgiving and dressing Amina in cute Gap sweaters :)

Wednesday, September 10, 2008


Amina took her first steps by herself yesterday!!! Her new teachers at UCP were DETERMINED to get her walking! We are so proud of her!

Thursday, August 28, 2008

Back To School

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.

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.

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.

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!

Wednesday, August 27, 2008

Happy 3rd Anniversary!

Can it be that it was all so simple then?

I met my husband 15 years (and 40 pounds) ago when I was in 9th grade and he was in 11th. It was 1993. Gas was only 99 cent a gallon. You know you're old when you start equating years of your life with how much stuff used to cost. Of course at that time we had no idea that one day we'd be MARRIED with a FAMILY! Young love is innocent and uncomplicated...back then the biggest decision we had to make was which movie to see on Friday night. As the years have passed, things have gotten a bit more complex, with a house and a baby and bills sometimes we look at each other and wonder, "How did we get here? Seems like just yesterday we were going on the prom!" (I'll spare you all and NOT post the prom pictures...I was in my blond phase). But, at the end of the day I wouldn't trade our family or the last 15 years for anything in the world, we got each other AND Amina out the deal. Happy Anniversary!

As an aside, it was 2 years ago on our anniversary that I found out I was pregnant with Amina!

Tuesday, August 26, 2008

Manic Monday

I began my day in a mad panic because I couldn't find my wedding rings, frantically turning my jewelry box upside down only to discover the rings were...on my finger. Then later I was explaining to Ameen what a bad day I was having, and remarked "Well at least its Wednesday, week's almost over." He looked at me kinda funny and said, "Ginneh...its only Monday." Sigh.

Now before you go check me into the psych ward, I blame this on stress and sleep deprivation, and thinking it was Wednesday was probably some Freudian slip to avoid our appointment with the FEEDING TEAM at 3:00.

As my best friend Michelle so eloquently put it, "Sometimes you eat the bear, sometimes the bear eats you." I think you can figure out who's got the full stomach today.

Wednesday, August 20, 2008

The Feeding Saga Continues

So, as you can see from the picture, Amina likes lemons. She adds this to her list of preferred foods: KFC mashed potatoes, Boston Market creamed spinach, mandarin oranges, mum-mums, Golden Oreos, and of course Pediasure. Aside from those, every now and then we find a food she likes kind of by accident, but generally she eats mandarin oranges and mashed potatoes. EVERYDAY.

Amina's new Early Intervention OT recommended that we add a dietician to her EI team to make sure she's gettin enough nutrients etc. It's kind of funny because there's not much to talk about when she comes...just mashed potatoes and oranges.

Kids with Williams are more likely to have underdeveloped teeth with defective tooth enamel. Amina has four of the CUTEST teeth I have ever seen, and since I am terrified of bottle rot, we've been working on eliminating milk at bedtime. The Dietician told me that it was great that I was being diligent about trying to eliminate the nighttime bottle, but because Amina has those teeth now, I need to get rid of the bottle completely because the bottle is going to start to effect the movement/position of her teeth.

I think its important to point out that this is is opposite of what my favorite folks at the feeding team told me. They suggested that I NOT try to eliminate the bottle because that is where she gets her primary nutrition and calories and we definately did not want her to loose those nutrients, if she refuses to take the milk from a cup (which she does of course). In their defense, it was a few months ago that I saw them, so their position could change but its still frustrating to have all the professionals giving you contradictory advice. Just about every parent of a kid with Williams will tell you that feeding is an issue AND sleep is an issue, so you can imagine how much fun its been when the two issues are merged.

Amina's pediatrician also informed me that its time to take her to the dentist. And she actually said it with a straight face. I said, "You mean MY daughter Amina? The Amina who refuses to eat and can't sit still? The Amina who won't even let me brush her hair or wash her face? You really think she's going to cooperate at the DENTIST?" After a person spends their time and money going to dental school, I think they deserve better than having to deal with Amina's little funky attitudes.

Amina and I have discussed the dental issues and I have explained that oral hygiene is very important. She has agreed to brush (suck toothpaste off her toothbrush) twice a day.

Sibling Rivalry

As you can see, Amina and Sweets DO NOT feel the same way about each other. Thankfully Sweets has enough sense to just ignore Amina rather than scratch or bite her. I guess she realizes she'd be on a one way trip to the glue factory if she laid one paw on her. (Animal lovers I'm just kidding I would never send Sweets to a glue factory...I'd get Ameen to do it. hehehe).

**Oh, and in case you're wondering why Sweets looks like Mad Eye Moody, she has glaucoma in her left eye. So twice a day Sweets and I have a wrestling match just so I can give her her eye drops. Sometimes she wins, sometimes I do, but day to day you never know how its gonna go. As if one kid with medical issues isn't enough. Sheesh.

If by 'great' you mean she has a rare genetic disorder, has therapy 4 times a week & eats nothing but mashed potatoes, then yeah, she's TERRIFIC.

"If they ask about me, just tell them I'm CUTE that's all they need to know."

People I haven't seen or talked to in a while always ask, "So how's the baby?" I usually respond by saying, "Oh she's doing great!" Which she is most of the time, but in my head I'm thinking, now do they really want to know, or is "how's the baby" just something you automatically say to a new mom? It's like when you ask people, "how are you?" We kinda expect them to say fine, and if they go into a whole rant complaining about how their bunions are killing them, we're looking at our watch like, um yeah TMI.

Sooooo...depending on WHO asks and WHAT they ask, I guess that determines how much info I provide. Because she's getting bigger now, people are asking all the time if she is walking. When I say no, there's kind of an awkward pause, and at that point I feel obligated to explain that she has some medical conditions and she's a little delayed, etc. Generally, most people mean no harm, they genuinely do want to know how she is doing, but no one EVER expects that the answers to the questions they ask are going to be negative. So when I say "no" she's not walking or "no" she's not eating well or "no" she's not really talking they don't really know what to say.

It gets frustrating sometimes because on one hand I feel I have to defend Amina but on the other hand, I get tired of explaining myself all the time, so sometimes its easier to just say "she's great!" Which is true anyway because she really is great!

On a brighter note, Amina is crawling now, she's all over the place! Crawling and cruising and getting into things. Of course my house is NOT childproof and I have no excuse because I've even had more time than most parents since Amina has been a late bloomer. So that's what I'll be working on for the next week.

"So let me get this straight mom, you mean I'm NOT supposed to touch the things on the coffee table?"

I Know I'm A Slacker...

I know, I's been a while. But in my defense, I've been busy! I mean look at that picture?!?! Can't you SEE how high maintenance my daughter is? This kid doesn't give me a minute to myself!

Shout out to my long lost friend Nancy for inspiring me to update the blog. Stay tuned for a whole SLEW of Amina updates over the next few weeks...

Tuesday, June 17, 2008

Daddy's Girl

What could be sweeter than a little girl and her daddy?

Father's Day gets a bad rap, so I'm personally taking some time out (never mind the fact I'm 3 days late) to shout out all the dads out there. Father's Day approaches and no one rushes to the mall to find the perfect gift. Year after boring year, dads all over the country get ugly ties, wallets or cologne and never complain - they take it all in stride. Dads love their kids as much as moms but for some reason get half the credit, half the accolades and half-ass gifts on father's day. Its really not fair. Today I'm proposing a movement to change the way we celebrate father's day! Next year is your year dads! Everyone who reads this blog: start saving now and buy your dad a really NICE wallet next year!

I knew Amina was destined to be a daddy's girl. She takes after her mother in that respect. I have been so blessed to have a wonderful father in my life, who is always there for me, loving me and supporting me in everything I do. I am happy to say that I think Amina will feel the same way about her father. Sometimes I sorta get the feeling that Amina has maybe taken my place in my dad's heart, but if I had to step aside, I'm glad it was for her. Both of my grandfathers passed away when I was too young to remember, so I never really had that special grandfather/granddaughter relationship, but I always wanted it for my children. Amina is blessed to have both of her grandfathers around to love and spoil her.