Wednesday, September 22, 2004


This morning, Ellie and I were at the moms' group/play group at Kangaroo Kids and one of my favorite mom/baby pairs (Brigitte and Jordan) were next to us. Ellie and Jordan hadn't seen each other in a couple of months, and they were fascinated by each other. First Jordan was reaching out to touch Ellie's head, then Ellie chewed on Jordan's shoe, then Jordan gently (we're all working on "gently") took Ellie's face in both of his hands and kissed her nose. He turned his head slightly, clearly waiting for a reciprocal kiss. Ellie, who is sparing with her wet, sloppy kisses, obliged. They went back and forth, to great enthusiasm from the watching crowd of mamas, until the babies got too excited and began trying to pummel and bite each other.

This was the most adorable interaction I've ever seen Ellie have with another baby. The best part was that no one said, "Aww, they're making out," or, "Ellie's got a boyfriend," or, "He's robbing the cradle!" (Jordan is 13 months old to Ellie's 11.) All of these sort of comments are so common at our more mainstream parenting groups.

It's so sad. Kids are kids for such a short time. Why do we push them so hard to grow up? Why do parents stuff their baby girls' bikini tops with tennis balls? Or put their toddler girls in hot pants with "cheerleader" written across their diapered bottoms? Why do we tell our crying baby boys to "be a man" and dress our daughters as brides for Halloween? Why are Kim Anderson-style portraits of children behaving like grown-ups so popular?

Let's let kids be kids. And more kisses, please!

Wednesday, September 15, 2004

God Bless You, Honey

As a first time parent, I have a hard time telling if the way people react to me is typical or is because I have a special child.

Lots and lots and lots of people (read: women) come up to me and tell me what a beautiful daughter I have. I say, "Thank you! I think so too, but of course I'm biased." I like those comments. It was months before I realized that while Ellie is of course especially beautiful, some of the comments might have something to do with the fact that she obviously has Down syndrome. People want to say something supportive, but what to say?! In these situations it's hard to tell how they mean those comments since I don't have much experience with taking other babies to the grocery store/playgroup/voting booth.

Sometimes it's pretty obvious, though. When Paul's parents were here visiting they wanted to eat at Cracker Barrel. After dinner, while they were still chatting, Ellie and I got up to walk around the store and blow off some steam. An old man came up to us, leaned in very close, and said, "God bless you, Honey." I knew what he meant. I probably should have responded, "I feel like God already has."

You know, most of the time I'm not thinking about how hard my life is, with a "special needs" child, so those comments are like a surprise elbow in the ribs as I realize how other people are seeing my daughter, seeing me. Most of the time I'm thinking that I wish she'd nap longer, cut this tooth, or grow out of spitting up. Of course, I'm not in denial so I don't mind talking about Ellie's Downs and I bring it up in context when appropriate. For instance, when we're talking about flu shots for the babies, I might mention how kids with Down syndrome are usually slightly immuno-suppressed so it's great if they can avoid the flu for the their first couple of years. That sort of thing.

In addition to:
Your baby is so beautiful!
What incredible blue eyes/blond hair!
and of course, God bless you, Honey,

I also get a lot of variations on this theme:
See, you're really strong and you're doing a great job with this. I could never handle it, which is why God didn't give me a child like Ellie.

My silent response: Bullshit.

Sunday, September 12, 2004

A Family Reunion, part II

It's awfully quiet around here lately.

First, let me say that Paul and I come from similar families with similar values. This was apparent when we were still just e-flirting, before we ever went on a date or spent the night together (and since this was college, the order of those two events is frequently interchangeable). At the Thanksgiving before my January first date with Paul, my dad asked me if I was dating anyone at school and I told him that there was this guy . . . but I didn't know if he was interested . . . and I wasn't sure it was what I wanted right then since it was going to be impossible for us to ever date casually. I was right; we were practically married from our first date on.

Anyway, despite the similarities in our families and in our upbringing, there are so many ways that our families are different, and those are more fun to ponder. Don't get me wrong, I love it that our parents are good enough friends that they will travel across the country to visit each other. But there are a lot of ways they are just not the same.

The weekend before my mother's family reunion (below) Paul, Ellie, and I traveled to Iowa for his mother's family reunion. Two August family reunions in the Midwest, could they have been any more different?

At my family reunion, we grocery shopped and prepared all of our own food because fast food and chain restaurants are just not an option.

At Paul's family reunion we ate at Applebee's every day because people liked it so much.

My uncle was nearly apoplectic when my 26-year-old cousin had a beer with dinner rather than wine.

Paul's cousin only had beer at his recent wedding because "[he doesn't] know anyone who drinks that fancy-pants stuff."

In Wisconsin we spent hours discussing politics, religion, current events, and processing interactions and events from 40 years ago.

In Iowa we didn't discuss any of those things. We talked about marriage and babies and logistics for the next time we'll all get together. Eventually we had to address the elephant in the middle of the living room – a horrible situation that's been going on for a couple of years involving one sister embezzling all of their parents money and putting "the folks" in a nursing home, possibly prematurely. Finally it became impossible to ignore.

It's really interesting for me to observe (and participate in!) both families and see the way the familial differences play out between Paul and me in our own relationship.

Friday, September 10, 2004

Babies Sleep Funny

This morning Ellie fell fast asleep on my shoulder. I carried her, a limp sack of potatoes, to her bedroom and put her in her crib. As soon as she hit the mattress she rolled onto her left side and stuck her legs straight out in front of her, perfectly stiff, still asleep.

I went immediately to my bed and tried the same pose. Lying on my side, legs stiff and stuck out at 90* from the rest of my body. A good hamstring stretch, but not a comfortable way to sleep.

I also don't wake up in the night to find myself lying on my stomach with all my legs and arms tucked underneath me, bum high in the air.

Nor do I sleep in the center of my bed, spread eagle. Or splayed out like a frog (with no hip joints). Or twisted in the middle with my neck cocked at an awkward angle and my legs sticking out between the crib bars. And I simply can't make my body do one of Ellie's current favorite positions: flat on my belly with one foot up by my face.

I do sometimes stick one arm straight up in the air, but I'm usually half awake when I do that. What can I say; it's comfortable. So I guess I can't be too critical of babies.

Wednesday, September 08, 2004

No Child Left Behind – Except Mine

An Open Letter to President Bush and Senator Kerry

President Bush and Senator Kerry,

You both support the No Child Left Behind education act, and there is a critical problem with the implementation of NCLB related to students with special needs that requires an urgent response.

Under NCLB, a percentage of all students must prove grade-level proficiency via standardized tests in certain core subjects, regardless of ethnicity, gender, socio-economic status, or disability. If any one student group (e.g. students with special needs) fails to prove proficiency on any one of 40 tested criteria, the whole school fails to show "adequate yearly progress" and will be penalized. 100% student proficiency is demanded by 2014.

The federal Individuals with Disabilities Education Act (IDEA) regulates education for students with special needs. Every student with a diagnosed disability or delay has an Individual Education Plan, specifying appropriate educational goals for that student.

NCLB and IDEA are meant to be complimentary pieces of legislation. However, the two federal regulations, as they are interpreted by many states across the nation, are at loggerheads. Students with developmental delays are being tested on material they have not been taught and might be incapable of mastering at an age-appropriate level. Students of normal intelligence with learning disabilities (e.g. dyslexia) who require extra time or other considerations to complete their work are not being granted exceptions. And schools are being penalized for their high failure rates.

This is a very important problem and it needs to be addressed immediately. Federal clarification and oversight are necessary to insure that the students who need the most help are getting it. Blind adherence to standardized tests for all students is serving to exclude those students for whom primary and secondary education is most critical.

Let's not leave more of our children behind.

Kirkwood, MO

Tuesday, September 07, 2004

No Child Left Behind - Except Mine (draft 1)

President Bush is pleased as punch about his "No Child Left Behind" education act. Senator Kerry says that he supports the NCLBA - with a few modifications. Nothing on his website suggests that students with disabilities fall into his category for needed modifications. This was originally to be an open letter to both Kerry and Bush letting them know my most pressing concern about NCLB, but it seems that I'm not yet calm enough to write a cogent letter.

Under No Child Left Behind, a certain percentage of all students (regardless of sex, race, ethnicity, socio-economic status, or disability must pass standardized tests in order for the school to keep its federal funding. Well, duh. Obviously this pressures schools to divest themselves of students who aren't performing up to grade level.

Each student with a diagnosed disability has a federally required Individual Education Plan (IEP) with realistic goals for that child given her or his special needs. Two federal mandates are clashing here.

Regardless of a child's special needs, regardless of what the IEP specifies as appropriate target educational goals for each student, all students are tested equally under No Child Left Behind. And if kids with special needs aren't passing, then the school is assessed serious penalties.

Hello?!! Why aren't people talking about this? Why aren't people enraged? We don't like to think about disabled kids. Well, wake up, people! This could be your child. We're not just talking about poor black babies from elsewhere who were born addicted to crack. We're also talking about very intelligent white kids from the suburbs who have dyslexia or some other learning disability and require extended time for standardized tests. And we're talking about kids with Down syndrome, like my Ellie. This is not something that we can ignore. This is something we have to address - now - before more children get left behind.

The students who need the most help are the ones being pushed toward the door, and that is simply not right.

Thursday, September 02, 2004

Read This

When asked if they want to have a boy or a girl, "good" people respond, "I don't care, as long as the baby is healthy." You've read it here first: I am not good people. When asked that same question, I would laugh and respond, "I don't care, as long as he loves to read." Or, "I don't care, as long as she's smart." I was being light-hearted, but I really couldn't imagine having a child that was so different from me. How could I love a child who wasn't passionate about reading? How could I relate to a child who struggled terribly in school? Fear of the unknown is a very powerful thing.

It turns out that, shockingly enough, just like everybody says, you love your child anyway. Well, I do, anyway. Besides, she loves books. And I think she's a freaking genius, in her own way. But before she's born, before you know her, before you love her, when you learn that she's not going to be exactly as you'd hoped and dreamed that she would be, there's fear. Icy, gut-twisting, the-world-looks-too-bright-and-still-today fear.

When we first learned about Ellie's diagnoses, our genetics counselor (the very same one who had earlier counseled us to relax because we have nothing to worry about, a very nice young woman who seems to be in the wrong profession) tracked us down to recommend a book. She says that she always recommends Choosing Naia to families "in your position." Obediently I went out and bought the book. It sucks. Granted, I had a pretty emotional response to it, and it's not all the book's fault. But I'm about to write my first ever scathing review and I hope I don't get sued for it. On the surface, it sounded perfect. Hey, here's a book about a well-educated, intelligent, career-driven, progressive, pro-choice couple expecting their first baby. They find out that the baby has Down syndrome and a serious heart defect. They must come to terms with this and decide whether or not to terminate the pregnancy. Hey! Just like me!

This book is poorly written and incredibly depressing. I was frustrated by the very short, simple sentences that made the book choppy and awkward to read. Halfway through, I had an epiphany: Hey! This author, he must have Down syndrome! This is a young man with Down syndrome telling this story in a direct, simple fashion. Actually, this book is really well written! Awesome! I should have left well-enough alone, but instead I looked up the author (have you noticed that I can't even use his name while I'm dissing him?). It turns out that not only does he not have Down syndrome, he's an award-winning journalist. Oops. Well, I guess the short, simple sentences are a bad habit from newspaper writing, then. Anyway, the book reads kind of like an 8th grade essay.

Plus, it's incredibly depressing. Filling in background on what it means to have Down syndrome, the author (oh, OK, Mitchell Zuckoff) introduces another character, a "high-functioning" young woman with Down syndrome, as a best-case scenario. She lives semi-independently but will never be completely independent. She's really lonely because she functions at a level above most folks with Down syndrome but slightly below most typical adults. She doesn't date. She doesn't have many friends. She has a hard time finding a job. Cheers!

When I first met Ellie's awesome, wonderful, amazing, gift-from-God pediatrician, she recommended Expecting Adam instead. Wow! Well-written! Not sappy! Honest! Fun to read! I loved it so much that I selected it when it was my turn to choose a book for my bookclub recently. The women in my bookclub loved it so much that they in turn bought it for their friends and family. And none of them know anyone with Down syndrome (except for Ellie, of course). Expecting Adam is about two Harvard PhD students who learn that their second child will have Down syndrome, but it's told in such a refreshing way that it's fun to read. I don't buy it all, and I have two criticisms: Beck is harsh on Harvard, but it's not really Harvard that she's railing against for much of the book; it's actually her family. Also, I just can't quite believe all of the supernatural stuff, though some of it rings very true for me.

Anyway, if you want to read up on a this surprisingly compelling topic, there's a second book I want to recommend. This one is incredible; I just loved this book. It's about yet another couple with PhDs who have a baby with Down syndrome, but this book is a bit different. There's certainly an aspect of personal essay to the book, which is a big part of why it's so fun to read, but it's also a political argument, an academic work. And it is work to read this book, but work that makes you feel like you've exercised your brain a little bit and now it's idling at a slightly higher pace. Read Life As We Know It: A Father, A Family, and an Exceptional Child; you'll love it. And while you're on Berube's site, check out his blog.

What's Next?

Upcoming blog entries, I hope:
  • a day in my life
  • family reunion, part I
  • on writing
  • weird things people have said to me about Ellie