Parenthood Lesson #4

THE GRANDPARENTS ARE NOT ON YOUR SIDE!!!!

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!

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 :)

FIRST STEPS

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!

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!

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!

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.

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 know...it'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...

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.

Amina Endorses Sure Steps

When Amina first got her Sure Steps I was doubtful. When Abby, her PT put them on her and pulled that strap tight, Amina yelped so loud I was convinced that after a few weeks of wearing those things, my daughter would be well on her way to having lotus feet that would make any Chinese aristocrat jade with envy.

I am pleased to announce now, however that after a few days, Amina was used to them, they aren't too tight and they actually do a remarkable job improving her pronation and stabilizing her balance. Within a week she was more comfortable pulling herself up, crusing and even standing on her own for a few seconds. We are crossing our fingers, but it looks like she may be walking within the next month or so!

Oh, and they don't come in fuschia, but they do have cute little pink and purple flowers on them and we've been successful in making them work with her summer ensembles. :)

Strasburg Railroad

Those of you who know me well, know I'm a city girl at heart, but I will admit that its nice to leave the skyscrapers, smog and escalating murder rate behind for a while and enjoy the outdoors. Our trip to the Strasburg Railroad and Cherry Crest Farms with the other families of kids with Williams Syndrome was actually lot of fun. It was HOT (and for once I was kind of happy that Amina couldn't walk yet so I wouldn't have to chase her around!) but the kids had a ball and it was great to be around other people who understand what you're going through. The kids were adorable all the families were friendly and so open and willing to talk about their kids and families which was great. Shouts out to Heather for organizing the trip!

What was interesting, however, is that me and Ameen seemed to switch roles somewhat on how we feel about Amina's diagnosis. I had been the one dealing 'well' with her diagnosis and Ameen was the one that has struggled a bit with it. After the trip however, he said he felt so much better. He got the chance to see the other children and talk to other fathers. I think he realized that although Amina was going to have some health concerns, she would still have her stregnths and weaknesses just like every other kid, we just may have to work a little bit harder on her weaknesses.

For me, it took me a while to process how I was feeling, but over the past few weeks I've been able to come to terms with what those feelings were: sadness, anxiety, worry, fear of the unknown. I think subconsciously I had the idea that although Amina had a lot of hurdles now, that we would just overcome each one, and never look back. I think talking to the other parents made me come to terms with the fact that Williams is going to be an ongoing factor for the rest of her life and even if she does overcome some issues, there may be others down the line that we will have to deal with. I see that although some children may struggle more with social aspects, others may have more health issues and others still may have more behavioral concerns, but no matter what, it's likely that its going to be something, and I worry about what that "something" is.

I try to put things in perspective and realize that even with "normal" kids, you could still end up having to deal with all sorts of issues. And maybe by knowing that Amina has Williams' we are at an advantage because we actually know what to look out for as she develops. Still, when I make those trips to the hospital each week or I'm attempting to give her the fifth different food at one feeding that she's still refusing, I can't help but think of all the other fun things I would rather be doing with her. Don't get me wrong, I LOVE taking care of Amina with all that it entails, but it does get tough sometimes.

Whew. Now that that mood swing has passed...I just want to let y'all know that if you ever want a fun day trip for the kids, Strasburg and Cherry Crest are fun and inexpensive and close enough that I didn't have to spend Amina's college fund to fill up the tank. (Ok so, secretly, still I wondered how it was that we could drive all the way to Lancaster and not go shopping at the outlets, but it was still worth the trip).

"Don't everyone's eyebrows "flare" in the middle?"**

Williams Syndrome is caused by a deletion of genes on the 7th chromosome, which causes many health problems and similar facial characteristics. (The genetic disorder that most people are probably familiar with is Down's Syndrome which is caused by an extra set of genes on the 21st chromosome. Kids with Down's also have health problems and similar facial characteristics.)

When we took Amina to the Williams Clinic at CHOP, I asked Dr. Kaplan if she thought Amina had the typical William's Syndrome facial features and she said Yes! Which is how she was able to pick Amina out of the waiting room of 4 or 5 kids. She said that Amina has the puffy eyelids, chubby cheeks, flared eyebrows, small upturned nose and full lips. I'm thinking, "flared eyebrows? what are you talking about lady?" But I'm also thinking, those are all the things that make her adorable, but what do I know?

I hope it's not illegal to use another kids picture on my blog, but anyway, when I was first looking up Williams' Syndrome, and I found this picture, I almost fainted because I thought she looked so much like Amina:

It has been really interesting to me, talking to other parents and reading other parents' blogs about their children with Williams. Its also amazing how these kids look like each other, but still look like their parents. I'm finding genetics really interesting these days and wishing that I had paid more attention to Mrs. Bratspir in high school biology. I read on one website that the older the kids get, the more pronounced their Williams facial characteristics become. I'm anxious to see how she changes as she gets older.

This weekend we are going on a trip with other families with kids with Williams. I wonder how I will feel with a group full of little kids that look similar to Amina. Will it feel weird? Or maybe it will feel comfortable, like when you go to a family reunion and see long lost relatives. I don't know but I'll keep you posted.

**(title of post taken from a quote from another parent on Williams Syndrome listserv)