Raising Henry: A Memoir of Motherhood, Disability, and Discovery

Rachel Adams' book, Raising Henry:  A Memoir of Motherhood, Disability, and Discovery, is coming out very soon.  And I suggest you go and get yourself a copy.  (I know, I know:  a memoir!  Yet another memoir that doesn't enrage me!)

Here's my sales pitch for this one:  Raising Henry reminds me of Life As We Know It.  That's a compliment for each book. Bérubé's book was published in 1996, so it's been a foundational piece of writing for a lot of parents who have children with Down syndrome.  Seventeen years later, Rachel Adams' book is set to offer the same kind of thoughtful reframing of what being the parent of a child with Down syndrome means (and it's no surprise that the books remind me of one another--Rachel* identifies Life as We Know It as her "road map" when her son Henry was born).

I loved reading this book in part because Rachel's thinking is so familiar to me.  She's an academic who's bridging her work in disability studies and her experiences as a mother to a child with Down syndrome.  She's attentive to the rhetoric we use and what it means.  She's grappling with the big questions of how we understand and engage with disability:  is it something we try to eradicate?  To ameliorate?  To embrace?  And she addresses these big questions while also sharing the day to day experiences of her first three years as mother to Henry.  As she tells her stories of feeding Henry, making cakes, scheduling appointments, she regularly says, "And what about this?  Think about these larger implications.  How do we make sense of this?"

My kind of book.  I have highlighted so much of the book, in fact, that it's difficult for me to know what to share here.  I have written, "Me, too!" or "Yes!" in the margins several times.  Examples:

• She critiques pregnancy books that characterize "the likelihood of conceiving a fetus with Down syndrome as a 'risk,' a word that implies a danger to be avoided."  As I'm writing this, I'm looking at a notepad on my desk where I've written the number of times the obstetrician who presented before me at the genetics conference used the word "risk" in this exact way.
• She addresses the new non-invasive prenatal tests that are being developed, and she asks, "But how do we decide what counts as health and what constitutes a disease?"  Yes, yes, yes!  Exactly the right question!
• And a less academic "Me, too":  she shares, "I became a Down syndrome stalker.  If I glimpsed a person with Down syndrome on the street, I would follow her with my eyes, wondering what she was capable of, what she liked doing, whether she had a happy life."  As I think I've talked about before, I'll do this and sort of hold Maybelle up, hoping that the person with Down syndrome will notice her and think, "Oh, good, a member of my community!" so that we can talk.

Because this is a book addressing life with a child with Down syndrome, it's a book about Rachel and not simply a book about Henry.  She shares her own anxieties--both about Henry and about herself.  Her life as a mother to Henry is, of course, tied up with her own experiences as a daughter, and because her mother died when she was young, she's sort of having to create the motherhood experience from scratch.  In addition, she's a professor--at Columbia, no less--so her professional world centers on intelligence, articulation of complex ideas.  She writes, "We were a family whose lives revolved around words.  The ability to communicate was essential to my career and my sense of self."  What does it mean, in this context, to have a child with an intellectual disability?  What does it mean to passionately love and value someone who challenges much of what you've assumed to be true, and so much of how you've operated in the world?

Rachel makes a statement toward the end that could be the thesis statement of the book I'm working on right now.  She's recounting a conversation with a woman who's considering cosmetic surgery on her child, to make the child look less like a person with Down syndrome.  The woman asks Rachel, "What's wrong with that?"  Rachel says,

"What's wrong with it is that Down syndrome isn't a disease that needs to be cured.  The problem is with the world, not our kids.  It doesn't help to try to pass them off as something they aren't.  I want to change the way other people think.  I want to change the world."

I want to change the world.  YES!  This book is one way she's doing that.

She writes, "We live in a world where a baby like Henry demands a story."  And she's written that story. Go get this book.  Then come talk to me--we will have a great conversation.


*I'm allowed to call her Rachel because now we're email friends.  Any students who are reading this:  you are never allowed to call an author by the first name unless you're actually friends!  Email friends counts.

Haircut

Today Maybelle is heading to Nashville to spend Memorial Day weekend with Walter and his parents (Maybelle's Grammy and Big Dad).  In preparation for this trip, I asked Claire to cut Maybelle's bangs (which were hanging into her eyes), and Larry to help make this possible by distracting Maybelle, holding her still, singing to her, whatever it took.

Of course, they were amazing.

Here is the beginning of the haircut:

Please notice Larry's efforts to keep Maybelle from grabbing the comb, the scissors, or Claire's fingers.  Maybelle is screaming in outrage.  Nina is doing excellent photography--a bit blurred because of the motion.

Here Larry and Claire have shifted to another position:  Larry's able to hold Maybelle fairly still so that Claire is able to cut her outrageously long bangs.  He's talking to her the whole time, informing her of what's going on, encouraging her not to fight it since it's only going to take 45 seconds.

Let me take this moment to say that I wasn't helping.  In fact, Claire and Larry might say that I was making things harder, because I couldn't stop laughing.  I was supposed to be aiding Larry in Maybelle-distraction, but the whole scene kept cracking me up.  I don't think I stopped laughing the entire time.

But look, they didn't need my help at all!  Here is Maybelle with fabulous new bangs.  Her stylist is now the person who does Larry's haircuts, too.

Maybelle stopped screaming and fighting the minute the haircut had ended, and then she was delighted to be with Claire, Larry, Adam, and Nina, and it was a bit of a struggle to convince her to go home.

Maybelle and I are both very happy to be honorary members of the Curtis-Krasnoff family.

Dresses

I love Dora.  She's adventurous and competent, she asks for help when she needs it, she includes her friends (and her viewers) in her adventures, and she is the protagonist.  She's not rescued by some guy.

I've only seen the first two seasons--and some of those episodes I've seen so many times that I have them memorized--so I guess I'm only speaking about those.  She might become some totally girly, squeaky, "Oh please save me!", stereotypical female character later on.  I hope not, but it wouldn't surprise me.

But let me get one step closer to my point here:  one of the minor things I like about Dora is that she's dressed in a fairly unisex manner.  She wears a t-shirt, shorts, tennis shoes, and a backpack.  Right on, Dora.  (In the image above she's not wearing her standard outfit, but still nicely unisex.)

In many of the products that are made with her image these days, though, she's dressed in frilly dresses and things.  I'm going to injure myself from all the eye-rolling I feel compelled to do.  Really, marketers--do you think Dora would wear some fluffy, ribboned, impractical outfit to go find the Big Red Chicken, or to climb a ladder and help repair a hot air balloon, or to ferry a boat across Crocodile Lake?  Maybelle has some excellent new Dora pajamas that she loves, and she'll be wearing them all summer, but Dora's wearing a dress.  Sigh.

Okay, but this is leading me to my actual point:  ruminating about Dora's clothing has led me to remember my own childhood, when I was probably about Maybelle's age.  In the summer, I remember identifying dresses as the best form of clothing:  they hardly touch your body at all, and you only had to wear two items of clothing--the dress, and a pair of underwear.  With unisex clothing, you had to wear three:  a shirt and a pair of underwear and shorts.  Plus, the waistline of the shorts is touching you all the time.

It's interesting how far away that experience is.  I almost never wear only two items of clothing anymore.  Four is the minimum.

So maybe a dress on Dora would be okay if it were fairly functional (i.e. not frilly) and if she offered a brief lesson about how nice it is not to have things touching your skin.

The Shape of the Eye--FREE books!

Okay, folks, I have entered the world of the high-class blogs.  I am going to be giving away two free copies of The Shape of the Eye, a book that I reviewed in 2011 with this high praise:  this is a memoir that doesn't enrage me.

That's actually a big deal.  Most memoirs written by parents of kids with disabilities make me ill for reasons I've explained in extensive academic detail in an article in Disability Studies Quarterly.  I won't go into all of that here.  What I will go into is the fact that George Estreich has written a fine book--a memoir that's thoughtful, loaded with chunky bits of insight that make you pause.  And he's written a book that isn't in any way about the fact that life with his daughter Laura is a tragedy.

He's a creative writer, so he believes in the power of narrative.  Here's a quote that may well appear in my own book:

"If our technologies are to benefit people with Down syndrome, then their lives need to become more real to us.  Science can illuminate one part of that reality, and technology can affect it.  But only story can convey it."

The Shape of the Eye was originally published by a university press, but it's a good enough book--and a readable enough book--that Penguin has picked it up, and it actually got reviewed by People Magazine!  Go, George!  Before he became so famous, George and I became internet friends, and I think that's how I got invited to offer up two free copies of his book.

Soooooo.....the first two people to write something in the comment section that makes me smile will have a book mailed to them.

Happy Mother's Day

It's been a wonderful Mother's Day.  This morning Maybelle and I slept until we naturally woke up, we did some dancing in the living room (she thoughtfully cleared away all the dolls and school buses and other things cluttering the floor so that we'd have room), and then we went and got some cinnamon rolls.

Let's talk about cinnamon rolls.  They're made at Wildflour, just a few blocks away from us, and they're only made on Sundays. They're about the size of the human head, and they are fantastically delicious.  Maybelle loves them, as do I.  She's been asking for them recently, so I thought it would be a perfect Mother's Day breakfast.

We biked to Wildflour at about 7:45.  I put Maybelle in clothes, but I wore my pajamas--I figured, hell, it's Mother's Day, and I'm visibly a mother!  We joined the line of about 20 people on the sidewalk, waiting for the bakery to open. Fortunately, I had called in our order at 7:30, so I knew that they wouldn't sell out of cinnamon rolls before we got ours.

We brought our two cinnamon rolls home.  We split the first one.  It was the perfect Mother's Day brunch for me--starchy, overly sweet, yeasty, very little nutritional value.  Mmmm.  And then I was full.  Like, full full.  I thought I might vomit, but managed not to.

And Maybelle said, "More cinnamon roll?"

"Really?"

"More!  More cinnamon roll, please?"

So I hauled out the second cinnamon roll.  Despite the fact that I was feeling a tiny but over-full, I had four bites of the second one.  But only four bites.  Please notice the remains of this cinnamon roll:

She ate half of the second cinnamon roll, which means she ate an entire cinnamon roll.  You'll see, too, if you look carefully, that she ate quite a bit of the frosting off the remaining half.  See those fork marks?  That's Maybelle.

I felt certain that she would vomit, but she didn't!  She did have one hell of a sugar rush, though.  A happy Mother's Day for both of us.

Dance party

Every morning around here has become a dance party.  Between the time we wake up and the time we have breakfast, Maybelle and I have started really rocking out.

I'm assembling a pretty good playlist:  "Groove Is in the Heart" (thank you, Catherine), "Ain't No Other Man" (thank you, Catherine), "Hey, Mickey" (thank you, ten year old me), and, believe it or not, Toby Keith's "Who's Your Daddy" (thank you, Eliza)--a song that is quite good to dance to.

Maybelle's becoming quite the dancer, so much so that I've begun looking for dance classes for her for the fall--and I mean dance classes, not ballet or something where her little body gets trained to rigid Westernized shapes and then they teach her to put on make-up for the performance.  I want her to have the kind of dance I had as a kid:  one thing I remember clearly was using our bodies to interpret Tom T. Hall's "I Like."  My favorite part was getting to run across the room and then use my body to act out an onion.

It's hard to capture Maybelle's dancing with my iPhone, but this gives you a sense.  I'm sorry that I can't capture my own dancing, because let me tell you, I have some fine moves.  I'm trying to teach Maybelle to move her hips, but she doesn't really have hips yet.

At any rate, when there's a morning dance party, Maybelle and I are the people you want to invite.

Love letter

It's a tiny bit early, but this is my gift to my mom for Mother's Day:  my latest column in the Charleston City Paper called "Even Though I'm 40, I Still Need My Mother."

(This means you're not getting anything else, mom!)

Waffles

It's been a week since I've blogged, and the thing that's important enough that it's pulling me away from my end-of-semester grading to write here is

WAFFLES.

Maybelle loves waffles.  Perhaps as much as she loves strawberry-banana Chobani yogurt.  I am a classy parent, so she eats nothing but the best:  Nutrigrain Eggos with Log Cabin syrup.

She's stayed with other families several times recently, and something I've discovered is that she won't eat waffles with other folks.  In part, I think she likes to eat her most familiar food when she's staying at other people's houses, and her most familiar food is yogurt.  So she eats--well, really, nothing but yogurt when she's with other families.

But it's also occurred to me that not everybody has the approach to syrup that I have.  (Mom, stop reading now!)

I was raised in a healthy household.  HEALTHY.  It was somewhat alternative-lifestyle at the time, but now it looks pretty familiar:  every Trader-Joe's-shopping middle class person eats the kind of food my mother fed us growing up.  Nothing like high fructose corn syrup ever entered our house.  The waffles were made in my mother's own waffle iron, and they were drizzled with actual maple syrup.

Which I hated.  I ate my waffles with homemade (I'm not kidding) strawberry jam instead.

So here's what happens with Maybelle:  she gets her waffles drenched in syrup.  Not drizzled.  Her waffles aren't a dry bread-product with just a bit of syrup flavoring them.  They are soaked with Log Cabin.  Each bite is heavy and dripping.  There's a pool of syrup on her plate when she's finished.  A common waffle conversation is

Maybelle:  "Syrup."

Alison:  "Full sentence, please."

Maybelle:  "I want more syrup, please."

And then I comply.

I got home from conferences exactly a week ago and went to the grocery store.  One of the things I bought there was a new bottle of Log Cabin.  Check out the bottle on the table in the picture above.  Empty.  And I haven't eaten any of it.  Maybelle ingests a full bottle of Log Cabin in one week's time.  That's pretty impressive, and really nothing at all like my childhood.

Now I'm going back to grading.