We were so eager to get Sophie talking, and now you can’t shut her up (in a good way — except for the constant WHYs, which are driving everyone in her vicinity nuts).
A question from late last week, which I hope to never forget:
“Mommy, what does okey dokey mean?”
I headed out tonight with every intention of buying Sophie a big girl bed. Her half birthday is tomorrow. It’s time.
OK, it’s years late, but I’m doing it, so lay off, conscience.
The only person who’s really shown any horror over the situation is Sophie’s long-time physical therapist, Dorcas. I love Dorcas. Last week in an email she correctly identified herself as Alpha Dorcas. In our pack, her word is gospel. That doesn’t mean I do everything she tells me to do immediately, but it does mean I wake up every morning fully intending to. And one of the things she’s been telling me to do for a LONG time now is get Sophie a bed.
So I found myself in the middle of Babies R Us. I’ve always hated that place. A lot. I remember my first visit well. I was very pregnant and practically swooned when I walked into that way-too-big, way-too-fluorescently-lit so-called superstore. It’s just too much.
Tonight I felt like an interloper, passing the maternity clothes, diapers (well, we do still use those — at night) and other accoutrement of babydom. I forget some days that I don’t really have a little one any more. But Babies R Us hit it home.
The bed thing is more complicated than I thought. I thought I’d buy a big sturdy bed with huge guard rails to keep Sophie from escaping and doing something dangerous like climbing on the toilet to reach a rickety glass shelf holding hair bands.
I envisioned many choices in this place, given how enormous it is, but maybe the selection is over at Toys R Us? They had three or four teeny tiny beds with teeny tiny railings at Babies R Us — and about a million cribs.
I walked out with one of those webbed guard rails you attach to a regular twin bed. That’s what my sister got for her kids, it’s what we did for Annabelle. I don’t think we even had a railing for Annabelle — just a bunch of comforters and pillows and maybe (yes, definitely) the crib mattress on the ground to break her potential fall. But Sophie’s different. As far as I’m concerned, she needs to be contained. That doesn’t mean I’m going to buy that mosquito netting people get, or keep her in the crib for several more years, though size-wise it wouldn’t be a problem. I’m going to get her out of the g-d crib, OK?
I’m just worried about it. But I’d made my decision: regular twin. So I shoved the rail into the back of the car and crossed the street to Target, where I invested in two sets of twin sheets with cute polka dots, and a matching comforter/sham set. I wasn’t sure where to buy a bed. They didn’t have any at Target. I passed a mattress store, but I wasn’t sure about that. I cruised by IKEA, but didn’t have the energy to stop. So I went to Trader Joe’s instead.
Then my sister called. “Did you find a bed?” she asked. I told her what had happened, and that I’d decided to do what she did. Turns out that’s NOT what she did. She went to a fancy kid furniture store and bought a special bed with built in rails. The webbed ones aren’t safe, she says.
Damn it.
I ran out of TJ’s (first securing a cartload of groceries) then skidded to a stop in front of the only fancy kid furniture store I know of in town, just minutes before 9 pm. Score, I thought.
Not. The place is out of business.
So now I have a carload of stuff to return and no bed.
But the best of intentions. Really. Meanwhile, Sophie sleeps peacefully — in her crib.
Last night, I sat with Annabelle and timed her for one minute while she speed-read part of a passage about squirrels. The goal, according to the Xeroxed paper that comes home each night from school, is 110 words by the end of the school year. The first night, she got 114 words. Last night (the third) she got 160.
Not bad. And I’m not even sure Annabelle’s in the highest reading group in class. I stopped trying to figure that out after I was disappointed last year, upon realizing she was only in the second-highest. (Don’t ask me why this is the one and only academic benchmark I care about. I didn’t even care when she didn’t make it into the gifted program. OK, maybe I cared a little but not as much as I care about reading groups! Probably because that was my only area of academic success.)
So Annabelle can read. She didn’t start early, wasn’t “hyperlexic,” a horrible title given to little kids who happen to great readers, but now she reads the heck out of everything. I remember when she began bringing home those little books in kindergarten, how it was obvious she was memorizing and matching words to pictures and then poof! One day, she was a reader. I don’t know how it happened. But I remember marveling that it had.
At the time, I didn’t think about how this process would (or wouldn’t) work for Sophie. Sophie loves books. She wants to be read to, she wants to pretend to read to you, she is known to grab a book and abandon just about any classroom activity. (How do you punish a kid for wanting to look at books?!)
But will Sophie ever actually read? Ms. X assures me that yes, she will. And for now, the biggest challenge appears to be that instead of sitting quietly with the book in her lap, following each word with her finger, Sophie wants to hold the book up and teach it to the reading group. She’s not in the highest reading group, or the second-highest. In fact, it sounds like Ms. X will soon have to create a solo reading group for Sophie so she doesn’t disturb the other kids.
It’s like walking. I said I didn’t care how long it took, as long as she did it eventually. And Sophie did walk at 3; now she runs and climbs and it’s hard to keep up with her.
The reading I just can’t get my brain around. Will Sophie be able to? It’s important. Vital. Not an option. One of the most important life lessons I think I can teach my kids is that no matter how bad things get, you can always escape with a good book.
For now, I am going to assume that Sophie will read. Maybe not 160 words in a minute, or even 110. But, I thought, as Annabelle sped through a line about how squirrels have eyes on the tops of their heads (really?) there’s no real need in life to speed read. (Unless you’re in high school debate like I was, dorkdom I wouldn’t wish on anyone, particularly not my own flesh and blood.)
So maybe Sophie will be OK.
Have you ever had one of those days? Of course you have. Today I was out of sorts for no reason at all – in fact, I had many reasons to be in a great mood: Sophie’s heart is healthy. Barack Obama’s our new president. I’m not on deadline (not really, at least) with a story.The weather is absolutely perfect — the temperature we dream of all year. The holidays are coming. (And I am the Jew who loves Christmas.)
And yet — bah humbug! I was in a rotten mood all day. Nothing could shake it out of me; I even snuck in a trip to Target, and left empty-basketed (well, almost) and still sour.
I got home in time for cuddles from the kids, which did help (it’s hard to be in a bad mood around either of my girls, and Sophie was so excited to not have to take medicine anymore) and stood at the mail table, surveying the mess. I started sorting, and landed upon what must be an untouched pile Ray brought in sometime last week.
In the pile was a thick white envelope from Amanda Blake, my total artist crush and godmother of Girl in a Party Hat, having named her via her lovely portrait. (Thanks to Deborah, as well, for actually coming up with the name.)
Hmmm, I thought. That must have been a VERY late night purchase. I have racked up the Amanda Blake purchases on etsy.com in the past few months, but didn’t recall one so recent. (See if you can resist: www.amandablakeart.blogspot.com or search her name on etsy.)
Inside was a brown waxed paper bag, tied with a pink ribbon. I knew what it was even before I lifted it out of the transluscent paper.
“Margaret in a Fairy Ring” is all it said on the back, in pencil, with a scrawled signature.
And with that, my black cloud broke.
Wikipedia is full of bad news about fairy rings, as I learned when I did a little Googling after Annabelle got a little obsessed not long ago. But I maintain that they’re nothing but good.
I had just hit “publish” when my phone beeped. A text:
“A+ appt. Off med. No ridilin.”
Translation: Good check up. Sophie’s heart is strong enough that she no longer needs Enalapril to lower her blood pressure. But not strong enough to put up with Ritilin.
Why is the route to get at what’s going on Sophie’s head so much harder than her heart? In so many ways, her heart is straightforward — it’s broken or it’s not.
“Great day, Mommy” Sophie called as Ray whisked her out the door early this morning. It’s Monday, my day to take the girls to school, but Sophie wasn’t going to school. She was going for a heart check up.
This is the money shot appointment, the one that comes with an eccocardiogram. I sent Ray off with a list of questions for the cardiologist, and the admonition that he let us know this time, if something’s wrong. The last ecco Sophie had at a routine appointment was in June 2007, and the doctor didn’t bother to tell us about the leak for another two months.
Not that it made a difference with regard to her health — these doctors are very good, the best in town, they knew she could go on for a while with no fix – but I can’t deal with what that did to my head, not knowing all summer that Sophie’s heart had gone bad again.
I put some Cheeto’s in her lunch as a treat. “My fingers get all cheesy!” Sophie announced, grinning, when I told her. I gave her an extra long hug, cupping my hand over the bump on her chest.
I just got an email from Ray entitled, “Hi Mommy,” with a picture snapped in the exam room. Now I just have to wait for his call.
It’s been a high-fashion week for Annabelle. Her grandma taught her how to sew on a button (I dug up some silver lame fabric — all I had ) and she practiced several evenings in a row. And in honor of fall (i.e., temperatures below 90) we dug out what I like to call “The Anna Collection” — hand-me-downs from our super-swank 10-year-old pal (daughter of the equally stylish Deborah).
I handed Annabelle a pile of at least a dozen pairs of jeans. We’d tried them on several years running; they never came close to fitting. This year every pair fit! Some are a little too short. Ah, to be tall and skinny (relatively speaking, Annabelle’s still the wee-est kid in her class) and to be able to wear ANYTHING.
Annabelle did a little twirl in a pair of Anna’s jeans — denim appliqued with white satin and seqins, trimmed at the bottoms with tulle ruffles. To die for.
“I wish I had a pair of those!” I said, more to myself than to her.
She stopped and turned.
“Do you think they’d look good on you?” Annabelle asked.
I was dumbstruck. This is the kid who draws everyone as a stick figure, who never calls anyone names, who tells me I’m beautiful.
“Annabelle! That’s not a nice thing to say!” I blurted.
She shrugged and turned. “I was just asking your opinion,” she said innocently.
Or not.
So I’m doing this reading tonight. Don’t be offended because I didn’t invite you. I didn’t invite anyone, not really. I screwed around on Facebook, trying to post something, but I’m not sure that worked. Anyhow, I’m doing this reading. I’m reading the original version (with some tweaks) of the piece I did for This American Life. I wrote it this spring. A lot has happened since. Nutty.
P.S. Apologies for the formatting. I tried to fix it. The bold and change of font are not on purpose.
PAPER HEARTS
No sooner had we fixed Sophie’s heart, than her brain came up as a topic of conversation.
Looking back, the heart was an easy fix. Half the kids with Down syndrome are born with heart defects, and Sophie’s is the most common. When she was four months old, the surgeon opened her chest and patched a giant hole in her heart. When she was 4 years old, she sprung a leak. They sawed her open again last November, and five days after surgery, my husband Ray and I had to keep Sophie from dancing across the kitchen floor with her older sister Annabelle.
If she’d been born a few decades ago, Sophie would have been dead by now. There was no way to detect a heart condition like hers, let alone fix it. Now, medical science has the heart nailed. Matters of the head are more complicated. There is no pill, no operation. Not yet, at least.
And so, in early February, I perched my butt on a tiny navy blue plastic chair in Sophie’s classroom, and faced her team: the pre-school teacher, speech pathologist, occupational therapist, physical therapist, principal and psychologist.
These are incredibly nice people. When Sophie had her surgery last fall, the speech pathologist made her a book, a looseleaf binder filled with photos of the school, the hospital, Sophie, her classmates and teachers. She’d even gone online and found a photo of the heart surgeon.
“I had to go the hospital and have an operation,” the caption under a photo of Sophie reads.
On the next page, there’s a cartoon of a kid yelling, “Oh Phooey!”
“The doctors were really nice.”
A cartoon of a kid yelling, “Hooray!”
“My teachers missed me.”
“Oh Phooey!”
“I’ll be back at school soon.”
“Hooray!”
Sophie had the book memorized in a day, and still risks avalanches in the playroom to dig it out. These people love her. I know that. They are also bound by state and federal law to do all sorts of things I don’t quite understand, but always suspect have to do with saving money.
The shrink, a gentle man with a good reputation (I can’t help it, I’m a reporter, I check people out), started.
“We’ve called you here today to ask you to sign some paperwork, so we can test Sophie. We don’t think she qualifies as mentally retarded.”
You don’t think she what?
Ever since Sophie was born, I’ve grappled with a lot of stuff about Down syndrome, but mostly with this whole mentally retarded thing. There’s a set of rules that must have gotten lost in the mail. Apparently you’re allowed sympathy for a baby who needs open-heart surgery, but it’s not politically correct to whine that your kid is dumb.
The other day I told a colleague at work that when Sophie was born, I considered choosing a different name. We’d planned for months to name our second daughter Sophie Rae, but it occurred to me when she was a couple days old that Sophie means wisdom in Greek. It was only for a split-second, but I did think about it, something I shouldn’t have admitted to that colleague, who – for her own split-second – looked like she might throw something at me.
Hey, I’m just trying to prepare myself, something I didn’t do before Sophie was born, which is so completely out of character for me I must be meant to have this kid. I don’t really know what it means to be around a mentally retarded person. I’ve never lived with one, or even had much of a conversation with one. Until I had Sophie, I avoided that bagger in line at Safeway. To me, retarded is defined by being in anything but the high reading group. (Math’s a whole different story.)
I arm myself with humor and try to avoid denial. At the same time, I know the world expects me to expect greatness in both my kids. And I do, really I do, but some days I just don’t know what that greatness is supposed to look like or what I’m supposed to do to get either kid there.
“We don’t think Sophie qualifies as mentally retarded,” the psychologist repeated. “We want to test her to find out. You need to give us permission to do that.” He shuffled a pile of paperwork.
I so wanted to celebrate. But I couldn’t. I had to ask a question I knew the answer to.
“Why? Why wouldn’t Sophie be retarded? Isn’t mental retardation included in the formal medical definition of Down syndrome?”
“Early intervention,” he replied, expecting that question, and the next one.
“And what if she does qualify as not mentally retarded?”
“She’ll lose her early intervention services.”
Oh Phooey!
When Sophie was just a few days old, someone who knew someone who had a niece with Down syndrome warned me that it’s really important to get early invention services going between 0 and 3. I had no idea what she was talking about. I thought occupational therapy was when they taught brain-injured people how to operate a snow cone machine. (I guess that’s vocational therapy.) I thought she meant 0 to 3 months.
(You gotta wonder who the retarded one is.)
I know all about early intervention now. These days, Sophie gets two hours a week with a physical therapist, one each with speech, occupational and music specialists, and more at school. It’s taken me years to find these people; they’re in high demand. They’re expensive, too; the state pays for all of it through a long-term care program. To qualify, you have to have one of four conditions: autism, cerebral palsy, epilepsy or mental retardation.
Not Down syndrome. Mental retardation.
I looked around the table. The therapists and the teacher and the principal looked back at me. I signed the paperwork. I could have refused, but that would have pretty much brought Sophie’s public school education to a screeching halt. And I’ll admit it. I was curious.
They sent me home with a copy of my parental rights and a pink paper heart that Sophie had cut herself, with minimal assistance. This was huge: She might be relatively smart, but no one (not even parents who love her, or school administrators trying to save money) can deny that this is a kid with challenges. She didn’t walk til she was 3, and at that it seemed like a miracle. Her vocabulary is good, but the low muscle tone associated with Down syndrome makes her almost impossible to understand. And the occupational therapist isn’t sure she’ll ever be able to write; she hopes someday Sophie will be able to sign her name. Cutting out a paper heart is huge.
I got in the car and immediately emailed Trish. Trish is the most maternal person I know, and one of my oldest and dearest friends. She sat up with Ray and me all night when we had Annabelle (although she didn’t watch the emergency C-section. We’re not that close.) When the blood test results came back for Sophie, I called her second, after my mom. Actually, I might have called her first. I don’t remember.
She rushed over to the hospital with a stuffed leopard. Her kids Zach and Abbie, now teenagers, are funny and wise, and all my other friends meet them and say, “That’s what I want my kids to be like.”
“Hey, get this,” I pecked out on the iphone. “I had a meeting at sophie’s school today. They do not think she is retarded.”
I knew what she’d say, and I needed to hear it. Several times now, when she’s busted them for using the word retarded, the admonition being, “I thought we weren’t going to use that word because of Sophie,” both of Trish’s kids have told her, “But Mo-om, Sophie’s not retarded.”
The reply was quick:
“Okay, no duh. The school confirms what Zach and Abbie have been saying for years. I also am convinced that when Sophie looks into my eyes, she is looking into my soul (and she doesn’t always like what she sees).”
That is why I love Trish. Also for the panicked phone call I got several days later.
“Oh shit,” she said. “I keep thinking about how that response I sent you wasn’t the response you needed to hear. This whole retarded thing is probably full of problems, it probably means she’ll lose her services, right?”
Right. Or at least, I thought so. No one could tell me for sure. I called the Center for Disability Law and the guy I talked to spent the whole time saying, “Wow, I’ve never heard of that. Are you sure? A kid with Down syndrome who’s not retarded?”
His advice: Don’t show the social service agency the test results. That way she won’t lose her early intervention.
“Um, is that legal?” I asked.
“How would I know? I’m not a lawyer.”
Sophie was starting to look pretty darn smart, by comparison.
The teacher emailed me to say the test results were in. Could we meet again?
I emailed back. Yes, I could meet.
I couldn’t wait. I had to ask. “She still qualifies as M.R., doesn't she?” I wrote. “I know you can't say, that's just my prediction -- services aside, of course that will still make me a little sad. This whole thing has been a little like "flowers for algernon" -- did you ever read that story in school?”
Yes, she’d read the story. It made her really sad. And no, she told me, Sophie does not qualify as MR. We scheduled the meeting and the teacher sent the test results home. Sophie’s IQ is 83. The cut-off for mentally retarded is 70.
Sophie, the test said, was able to correctly identify the color of her shoes (pink) and her pants (black). When asked her age, she said, “Four, almost five.” The test said a lot more, and concluded she had “below average intelligence”.
That startled me. I was so used to seeing the word retarded, it had lost meaning. How dare someone say Sophie was below average?!
Last fall, before Sophie’s heart surgery, I snuck in a quick trip to northern California. I met with a doctor at Stanford who is researching brain-boosting drugs. He believes he can stop early onset Alzheimer’s (almost always a byproduct of Down syndrome) and that someday, there will be a pill that you can give to a person with Down syndrome that will boost her IQ by 20 points.
The doctor showed me a power point presentation and asked if I knew anyone with a lot of money.
Then he dropped me off with the scientists. I showed them pictures of Sophie, and they showed me slices of dead mice. (I wasn’t allowed to go to the basement, to see the live ones who’d been grown with a form of Down syndrome. I guess I could have been a spy for PETA.)
The scientists were really nice. But they all seemed a little uneasy, and kept asking if Sophie was getting early intervention services. One of them, a fellow from the Ukraine, walked me to the window outside his lab, and pointed to a row of trees.
“See those?” he asked. “Those are ginkgo biloba. The one with the fruit, that’s the female. People come here and pick the fruit, and feed it to their kids.”
I got the message.
I left with a ginkgo biloba fruit wrapped in a napkin tucked in my purse. I put the fruit on my windowsill at work. It’s shriveled now.
By the time I got to that next meeting at Sophie’s school, I knew we were screwed. If Sophie wasn’t MR, she wasn’t getting any more services, or at least, very few. I sat at the table, accepted another copy of my parental rights, and looked at the psychologist.
Instead, the principal spoke first. “We all know what will happen if Sophie isn’t labeled as MR,” she said. “She’ll lose her services, services we all believe got her where she is today. And so you have a decision to make. You tell us what to do. You have to decide today. You can label Sophie as mildly mentally retarded, and she can keep her services. Otherwise, she’ll lose them.”
I knew the answer to the question, but I had to ask.
“What if I don’t label her mentally retarded? What will that get her, other than bragging rights for her mother?”
“Nothing.”
So I signed the paperwork. The principal was nice enough to write on the forms that the team, including the mother, “agonized” over the decision. The psychologist left the room, and edited the test results. The numbers stayed the same, but he added a part about how it was believed the results were inflated, due to early intervention services.
I bit my lip, wishing he could write something else.
As usual, Ray broke up my pity party. After the meeting, I explained to him what I’d done, that they’d asked me and I’d told them to label Sophie mentally retarded.
“Well,” he chuckled, his own defense mechanisms firmly in place. “That was a no-brainer. Sophie is retarded.”
“I don’t know,” I said, tentatively. “I think she’s pretty smart.”
“You know how I know Sophie’s retarded?” he asked. “Because when you play Memory Game with her, she gets as excited about the last match as she does at the first.”
I had to laugh, and I had to agree. It’s true. Right now, I find that endearing. Maybe in a few years, I won’t.
Yesterday, my mom took the girls and me to see the live Sesame Street show downtown. When the lights went down, Sophie was beside herself, squealing, shouting, about as excited as a human being can get. My mom and Annabelle and I all grinned at each other.
And then suddenly, out of nowhere, it hit me. I’ll be taking Sophie to see Elmo when she’s 20, and she’ll be just as excited as she is today. I sat back, a little winded. I swear, I’m not making this next part up: A moment later, I looked up, and there, in the dim light, I saw the silhouette of a short, squat person – I couldn’t tell if it was a man or a woman, but from the side, the features were unmistakable, the tiny nose, the flat head, the bent posture. The person disappeared down a row and into the crowd, but not before he or she had confirmed the future.
We all worry this stuff to death. Maybe it would be best to take a 7 year old’s approach. The night before Sophie’s fifth birthday, Annabelle finally started asking questions about her little sister. When she was done, we sat on the couch, quiet.
“Does it make you sad,” I asked, “that Sophie’s different?”
“No,” Annabelle answered. “If that’s her, that’s her.”
Word around school this week is that Sophie’s been swiping other kids’ drinks at lunch. She drains her juice box and nabs someone else’s drink, particularly if it’s strawberry milk. I stuck 35 cents in this morning, so she could get her own, which she thoroughly enjoyed.
I didn’t mean to be in the cafeteria during her lunch hour, but Sophie spotted me at school this morning so I promised to reappear at lunch — then hustled through Mrs. Z’s Xeroxing (man, I better not quit my day job — the copy machine and I DO NOT get along) and made it over for most of the kindergarten lunch hour.
Arrgh. I’d heard all about kindergarten lunch — it’s legendary — and most recently, both my mother and Sophie’s occupational therapist had spent time in the cafeteria, observing.
What a freaking mess. I know the idea is to let the kids blow off steam during the lunch hour (um, it’s hardly an hour — 30 minutes from start to finish, including time on the playground) but it’s ridiculously out of control in that cacophonous, smelly, linolium-lined lunch room. I didn’t see one kid finish his/her lunch. Probably a good thing, considering what they were serving — something that passed for a BBQ rib sandwich. I had to ask a kid what it was.
Sophie brings her lunch, mostly so I can put stuff in that she’s able to eat easily and quickly. It was a liquid lunch for her today (probably every day); I was lucky she consumed half a mini-quiche. The raisins went untouched and the cheese/crackers were just played with.
And Sophie stays in the lunch room almost the whole time; I was blown back against the wall when someone blew a whistle and most of the kids cleared out to the playground. Before the half hour was over, I’d clapped my hands over my eyes at least twice. (It is true that I scare easily.)
I braced myself for the playground, having been warned about the horrendous ratio — every kindergartener in the school versus one “duty” (please, someone, come up with a better term!). The woman walked around the playground, looking hard and blowing her whistle; but lacking eyes in the back of her head, I just don’t see how she (or any one person) can adequately watch all those kids.
Last week when my mom was there, a little girl wet her pants. Today a kid fell and skinned her hand; she didn’t know what to do. Neither did I.
As I’ve written before (I’m almost sure I’ve covered this already in some depth) there is no law — state or federal — regarding playground ratios at public schools. The ratio at the aftercare program at our school is 12 kindergarteners to one adult. In the classroom it’s as high as 23 (maybe higher) and outside, apparently a 1 to 90 (or so) ratio is cool.
The duty has a walkie talkie, the principal told me, the first time I complained. Anyhow, she said, the school’s not violating the law.
Yeah, I replied. Because there is no law.
I’m holding off while I formulate my second complaint. I need more ammo. And, yeah, less snark.
So the Elmos aren’t working, as you already know. It looks like the tough love approach might be the ticket.
Ms. X called the other day to report that Sophie had had a pretty terrible morning. In the afternoon (and without any interns to help out) Ms. X tried a new tactic. She sat Sophie down and sternly (but lovingly) told her, “Sophie, you are a smart little girl! You can do the work the other kids are doing. Stop screwing around and do it!”
And sent her off with the afternoon’s work, a multi-step project: pasting the correct words onto a picture of a tiny plant (stem, seed, etc), coloring the plant, writing her name at the top.
Ms. X held her breath and firmly sent Sophie back to her seat.
A little while later, Sophie appeared at Ms. X’s side, paper in hand. It’s now proudly displayed on our fridge. Darn good, and the best writing of her name I’ve seen yet. The leaves are black (hey, her mom’s never kept a plant alive, so she has no point of reference) but the flower is yellow, the stem green, the soil brown.
“And she did it all by herself!” Ms. X said proudly.
One afternoon down. So many more to go.
