Wednesday, April 28, 2010

A Post Worth Reading

Fionn's hair - before brushing

I just wanted to share this post written by another mother of a child with albinism. We don't necessarily take the same approach to the word "albino" as their family does, but she has great points and interesting links. Her discussion of how people equate people with albinism to animals with albinism really struck home for me. When Emerson was first diagnosed, friends and family were constantly emailing me chain emails with pictures of white squirrels or deer. I really appreciated it because they sent it out of love for what we were going through and it was a reminder of how beautiful and diverse the natural world is.

Over time, though, these kinds of emails started bothering me. When sent by someone close to us, I appreciated their intention, but the fact remained that they had received this chain because this animal was a "freak" to be gawked at. The hundreds of people who had passed the email along before it got to me most likely did not pass it along because they knew someone with albinism and understood what it meant. They hit "forward" because it was a digital freak show - just like the "People of Walmart."

Just this morning I was at Trader Joe's having one of those outings where everyone in the building decides to invade our personal space. One woman stopped and started stroking Fionn's hair repeatedly, several stopped and stared point blank. Then one man came running up and got right into Fionn's face, saying, "Is he albino?!!" I said politely, "No, he has albinism." The man didn't seem to hear me and, speaking in the loudest voice possible to attract the two or three people in the store who weren't already staring, proceeded to run the entire list of hackneyed expressions about the color of his eyes and hair. The only new one was, "He's a million dollar baby! A million dollar baby." As he ran his fingers through Fionn's already manhandled hair. (Thank goodness the one with apparently irresistible curls is also the social one. If Emerson was in Fionn's position, I'd be breaking a lot of arms.)

As if this wasn't enough, the man then yelled, "Wait, I have to go get my wife so she can see him!" I tried to make an exit, but apparently said wife was very close. As we repeated this entire scene again, at full voice, another parent with a boy Fionn's age shot me a very sympathetic look. He and I had exchanged pleasantries several times during the shopping trip and our boys had taken an interest in each other. His look said a lot. And I appreciated it.

Friday, April 23, 2010

A Television Apologist

Three days after Emerson was born, I was informed I had to brave the frigid December temperatures and compose my exhausted, milk-soaked body for a trip to our pediatrician's office across town. The baby needed his first check up - and the only time slot allotted for newborns was some ungodly hour first thing in the morning. We did as we were told, but for the first time we realized why the baby books warn you to pick a pediatrician ahead of time and research their office policies.

After a frustrating breastfeeding encounter in the waiting room, we were shuffled into a room with a woman who was not the main pediatrician, but apparently the only doctor available for newborns. She gave him a look over (was the hundredth person in a row who failed to notice our child had NO pigment) and then started firing questions at us. One was about our sleep situation, so I responded that he was sleeping in a bassinet next to our bed and it seemed to be going well.

She narrowed her eyes menacingly, "In a few months, you're going to regret that. Move him into a crib in his own room."

If someone treated me like that now, I would just say "I don't remember asking your opinion, nor do I value it." And then walk out. Instead, we were both so stunned and overwhelmed with new parenthood, we said nothing. A few days later, we moved him directly into our bed.

We stayed with that office since the main pediatrician was a wonderful woman, but we couldn't always see her. Our bad encounters with the other doctors eventually pushed us away and we went on the pediatrician hunt. Through word of mouth, we found a small, natural, hippy dippy practice much closer to our house.

During our very first appointment with the new doctor, he took one look at my pregnant belly and said, "Make sure to call my office after the baby is born so we can schedule his first visit."

"We're having the baby at home," I said hesitantly.

He didn't even flinch. "OK, I'll do a house call."

The new doctor was warm, open-minded, and asked a lot of questions to make sure the family was doing well - not just physically, but emotionally as well. The first time he asked me how much television Emerson was watching, I took this as yet another good sign. I didn't believe in letting children watch a lot of TV, if any at all. I fell into that smug, "people shouldn't use television as a babysitter" camp. Most of our friends in Ann Arbor felt the same, and even if they didn't, they were too ashamed to admit it.

The anti-TV mentality applies to adults as well as children. I've heard many conversations that go something like this:

Person 1: "Did you see that show last night?"

Person 2: "Oh, no. We don't watch that much TV."

Person 1: "You're really good. We try not to watch too much - just this one show."

Person 3: "Yeah, we don't even own a television."

Person 1 and 2: ""

Robbie and I watch television - not as much as some people, but certainly a lot more than our hard-core friends. We vowed we wouldn't use our TV as a babysitter, though, and for a long time we could confidently brag to our doctor and friends that Emerson didn't watch TV. This wasn't because we were strict parents, it was simply because he showed no interest in it, even when we were watching. The only thing that ever caught his attention was the theme song to Northern Exposure, and for a brief period, he'd watch a few minutes of the Daily Show or the Colbert Report. We had the best of all worlds - we got to be self-righteous without any of the actual work.

Then that all changed. He started noticing TV more and more, grandparents started turning on cartoons for him, our non-Ann Arbor friends who do watch TV would turn on a kids' movie during a playdate. He started sitting through short shows. Over Christmas we bought him the Curious George movie and he quickly learned to sit through an entire movie. Then he wanted to watch multiple times in a row. Grandma and Grandpa came to visit and introduced him to PBS On Demand and it was at that point we realized we were totally screwed.

Now we do have to monitor and restrict. Gone are the days of easy bragging. And yet....I'm finding myself grateful for the transition. When he first started watching, I realized I could talk with him about what was going on and get him interested in things he wouldn't normally be interested in.

For example, back then, we would go on a walk and if we passed a duck in the pond, I would say, "Look Emerson, a duck!!" He would slump down further in the stroller and scream, "No!!" It was as if he wanted to shut the world out all the time and only explore small bits - on his own terms. He wouldn't look at a duck, but he would open and close a door a hundred times, or explore a set of stairs over and over again. To say I was beginning to despair was an understatement.

Now, however, I say, "Emerson, look at that duck! Remember when Elmo went to the duck pond?" And suddenly he's eagerly looking, making duck noises and jabbering away. If an episode of Calliou is about making pizzas, I'll have Emerson help me make pizzas later that week, and he's actually enthusiastic. I don't pretend that TV is solely responsible for these changes, but I've been able to use it as an aid. The world that seemed too big and scary and hard to see is now right in front of his nose on TV - bigger than life and under his control. (And yes, like most kids with albinism, he stands RIGHT in front of the TV in order to see it.)

A few months ago, I was watching a series of videos made by a woman with albinism. She talks frankly about her experiences and mentioned that social skills can be hard to learn when you can't see the subtle facial expressions and body movements that people use when interacting. She said her best tool for overcoming this was watching TV. On TV, she could see up close how people interact - how they make eye contact and the facial expressions they make. I felt a flood of relief. Not only was I not going to win Worst Mother of the Year Award for letting him watch TV, I also had another tool to help me with his struggling social skills.

Of course I recognize that TV is full of consumerist messages and as he gets older we'll have to be diligent about teaching him media literacy. We'll always have to monitor and set time limits. But our hardcore friends will continue to "tsk tsk" whenever Emerson asks to watch a show while they're over or whenever he plays with a TV brand toy in front of them (although I find it interesting how many of them don't think twice about watching hours of YouTube or Hulu). Our doctor will continue to lecture us about the evils of exposing young children to TV whenever we go in for a visit. And sooner or later I'll have the energy to express why I've changed my opinion.

In the meantime, I'm doing what I think is best and that's all that matters.

Speaking of which, I'd better stop here. It's 11am and we're still sitting in our pjs in front of the TV.

Don't hate.

Sunday, April 18, 2010

Working Girl

You know that feeling you get in the pit of your stomach on the first day of a new job? It happens when some (hopefully) competent boss or colleague shows you around the office, gives a few tips here and there, overwhelms you with details about the job duties, and then leaves you feeling bewildered and drowning in a pile of HR paperwork. At least for me, that feeling is the sickening realization that despite all the training and preparation in the world, this is a new environment with new people...and I don't know crap.

There's a flip side to this feeling, of course. It's that moment, maybe months later, when another new person comes through the door. Only this time you're the one who's doing the training/orientation. You show them where to get good coffee, you know just how to punch the copier to get it unjammed, you warn them about the flatulent man in accounting. And then suddenly it dawns on know what the hell you're doing! You've been through the fire and you've come out the other side a pro! Ok, maybe no one is ever truly a pro at any job, but competent still feels great.

Right after the births of both boys, I felt that sickening pit in my stomach. A nausea that reminded me that no matter how many classes I had taken and how many books I had read, this was the real deal and I didn't know crap. I thought the second time would be easier, but I had deluded myself into thinking a second baby instinctively knew it needed to be easier. Maybe I was right, but Fionn certainly didn't get the memo. And simultaneously moving into our first house that needed extensive renovating in the middle of Christmas time...well that was just downright insanity on our part.

Lately, though, I've started to recognize a new feeling. Maybe it's just the stages they are in, or maybe it's due in large part to the fact that Emerson is out of my hair for 4 hours a day 4 days a week, but I feel like I've finally gotten my sea legs. For sweet, albeit brief periods, I think "Maybe I AM competent!" I went through the hell fires that were the first year of babyhood - twice - and somehow we all survived.

Emerson is now fully potty-trained, which I consider to be our most monumental parenting accomplishment yet. Fionn is Mr. Independent, which means a lot of battling and screaming, but on the up-side he's learning new skills at high speed. Now that we've got a list of places to let them run around like crazy and have given up on trying to grocery shop with them, things are calmer.

This is not to say things are easy. An outing to the playground means literally running non-stop between doing "underdogs" on the swing for Emerson and keeping Fionn from hurtling himself head-first down the biggest slide. The noise level in our house is astronomical (as anyone who calls us can attest), the sibling squabbling is constant, and we still have nothing that resembles a schedule. The only thing that's certain is that sometime in the afternoon, I will have to get us all out of the house or risk mutiny.

It's nice to be the kind of mom friend that can finally swap battle stories and once in a while even offer sound advice. Although I have to say, after two such totally different kids, I'm surprised at how many parenting dilemmas I still can't answer. I'm now the one giving extremely frustrating sound bites to new parents - things like "sometimes you have to wait it out," or "all kids are different, so there's no right answer." Sorry.

I've worked many office jobs - all in non-profits - but the lay of the land was different in each one. Every first day left me feeling off-balance and I wasn't sure I'd ever feel like a pro. But it passed.

This job certainly hasn't come with any real training and the lay of the land is completely different with each child. I wasn't sure I would ever feel capable of getting through the day much less another 18 years. But slowly, it's passing.

Now if I could just figure out how to get more paid time off and sickleave....

In a poignant parenting moment, Fionn crawled into the dog bed one night and fell asleep. We left him there so we could watch a movie.

Friday, April 16, 2010

Albinism in Pop Culture

(This doesn't count as my Friday post, but I still had to share)

Another villain who looks like a person with albinism. How....original.

Wesley MacInnes as "Iceman" in Smallville

Honestly, my first thought when I saw this was, "Smallville is still on? And people actually watch it?"

Friday, April 9, 2010

Easter Recap

It's nearly a week after Easter and my house is still littered with borrowed dining room chairs waiting to be returned to their rightful owners, a basket full of candy that tempts me every time I walk past it, and a fridge that offends my vegetarian sensibilities by stinking of ham (with undertones of hard-boiled egg). Despite the aftermath, however, the weekend was well worth it.

It started on Saturday with the now-annual Easter Egg Hunt fundraiser at Georgia Street Community Garden in Detroit. We spent the morning at Eastern Market, picking out a locally-raised ham for Sunday dinner and flowers for the table setting. The trip was shorter than we had planned for due to a late start (imagine that - our family running late!), but the boys got to see a marching band, ducks, baby chicks, rabbits, and a heck of a lot of people. We got to see a man shoving a live sheep into the trunk of his Mercedes.

I was immediately indignant. "That's animal cruelty! That sheep is huge - it's not going to be able to breath or move in that tiny trunk!"

Robbie rolled his eyes.

"I don't think they care if it dies in the trunk - they're going to slaughter it anyway."


After the market, we raced to the Garden and were relieved to find the hunt hadn't started without us.

They boys were a little slow to catch onto the concept, but they pulled in a decent haul and the weather held out. Afterward, we ate brunch in the community store, got a chance to talk to some amazing people, and Fionn did a little dancing.

Thankfully I didn't pay to have the boys' picture taken with the Easter Bunny at the mall. I got this priceless picture for free.

On Sunday, we hosted 20 people (family and Easter orphans) for an egg hunt, dinner and some Easter games. It was fun to see all the babies in their first egg hunt, and having a large orchard across the street from us came in handy.

We enticed a few people to do the egg toss with raw eggs after Robbie demonstrated how to catch the egg without breaking it...and how to not catch it in front of your face. Five minutes later, his dad took one in the face.

Dinner was a lot less messy and by some miracle we fit all those people into our tiny dining room.

Later, as we collapsed onto the couch, we promised each other (as we do after every party) that next time we will scale WAY back.

We won't.

Thursday, April 1, 2010

But Now I See

As usual, the aide on the school bus scooped up a sleeping Emerson and sent him staggering out the door into my arms. He said a muffled goodbye as she handed me his backpack...and his white cane.

He started taking cane lessons with his vision teacher a few months ago, but this was the first time I had ever seen it and the first time we would do a lesson at home.

It's hard to explain how something can be so adorable and heart-breaking at the same time. Here was this instantly recognizable symbol of blindness and yet it was so tiny. It was my son's cane.

When we got inside and he realized "Mr. Cane" (as his teacher calls it) had come home with him, a huge smile spread across his face.

"Oh HI cane!" he chirped.

He pushed it across the house for a few minutes like an old pro and then Fionn tried to sneak a turn. Emerson screamed in protest, a tug of war as usual again.

After lunch, we went outside with it so that our Vision Teacher could start the lesson the moment she arrived. (And so that she wouldn't need to see the inside of my disastrous house.) She ended up being delayed by another student, so I let the boys wander around the yard for a while.

I instantly noticed that Emerson was much more adventurous than usual - even the times when he wasn't using his cane to explore. He was in and out of the bushes, tapping at the cracks in the neighbor's driveway, and generally pushing the limits of where he was supposed to go. He'd walk up to the imaginary line in the sidewalk that he knows he's not supposed to cross, and instead of obediently turning around, he'd pause like a swimmer about to dive into a pool, look back at me...and then take another step.

I was thrilled to see him exploring and being brave, so it was hard to be too upset about this developing defiance. Still, safety is safety, so it wasn't long before my nagging voice forced him to turn around.

When the teacher finally arrived, we walked around a part of the neighborhood he isn't used to so he could really test his skills. He was great with what they call the "diagonal" method, which is basically pushing it in front. She explained that as he gets older, she'll introduce the tapping technique from side to side, which will make it even safer.

Lately he doesn't like to get out of the stroller and walk (at least not until we reach our destination), so it was a nice change to see him running and exploring everything again. There were times when the cane would just become something that tripped him up or dragged behind because he wasn't actively using it, and a little doubting voice would creep up. "Does he really need this?" "He manages fine, won't this make him dependent again?"

Then he'd take off running, not notice the curb in front of him, and go crashing onto his hands and knees.

Oh. yeah.

We'd dust him off, remind him to keep Mr. Cane in front so it can "see" things first, and he'd be off again using the cane properly. It was fun to see him picking up the technique so fast and his teacher was thrilled with his progress. But trying to teach him how to recognize the difference between a street and sidewalk and how to both "look and listen" for cars was a sobering reminder of all the important lessons still ahead. Thank god for vision and mobility teachers!

Using the technique to explore stairs. Luckily no one was home.

Using the cane out in public was also an interesting social experiment. We brought it to the playground with us and I noticed a lot of furtive glances from the other parents. When Emerson jumped off the swing and headed toward the climbing structure, another mother was watching and instantly started yelling at her running sons to "Be more careful!!"

I'm sure it was confusing to see a little boy with a white cane running up and down the climbing structure without pause. I've heard from people with albinism that having bad vision - but still having vision - is sometimes the hardest part since people don't know how to treat them or think the cane is a ruse. I'm not sure how to address that at this point, but I'm sure life will give me a crash course soon enough.

Meanwhile, we are all learning a new way of navigating - literally and figuratively. We're trying to see things from a new perspective and then turn around and teach it to the boys. Maybe that's why I've developed this sudden love affair with the spring season the past few years. Fall is still my favorite time of year, but lately spring and the Spring Festivals seem to have more significance. The more I learn about religion and symbolism, the more I realize that all these eggs and bunnies and chicks have a special import for me. It's not a Hallmark holiday or a random collection of folklore - it's about femininity and fertility and new possibilities.

Our first spring blooms

Most of us know the Christian story of resurrection, but many religions, including pre-Christian religions, have spring festivals that celebrate the death and resurrection of their deity (or one of their deities). Maybe I'm just more sentimental about spring and Easter now that I live in a state where the winters viciously beat all life and light out of the world for months on end, but I think it's also because my journey through parenthood has forced me to go through a similar cycle. Over and over again, the image of the parent I thought I'd be and the kind of life I thought I'd have dies...and I mourn the passing. But something different and better always triumphs.

And we start again.