Party Hat

Well Check

posted Friday September 26th, 2014

sophiesixthgrade

Sophie had her annual well-check yesterday. It was blissfully uneventful.

She is still in the third percentile for both height and weight, she caught air when she was asked to jump up and down, and no one even mentioned her twice-mended heart — though the pediatrician did give it an extra-long listen.

As he turned to leave the exam room, Dr. Alexander stopped and turned to me, file in hand, gesturing to Sophie.

“She’s really special,” he said. My heart melted because I knew he didn’t mean it in a special needs kind of way — and when you have a kid with Down syndrome, you just don’t hear the word special in any other context.

I love our pediatrician. David Alexander has practiced in Phoenix forever; in fact, he’s been around so long his mentor was my pediatrician. I have to schlep across town to make it happen but it’s worth it to bring the girls to the same practice.

Even though I probably should have found Sophie a “special needs” pediatrician as soon as she was born, it turns out that Dr. Alexander was  exactly the doctor we needed.  He’s a generalist. I have no idea how many patients he’s had with Down syndrome over the years — it can’t have been many.

I know there’s at least one besides Sophie because 11 years later I still remember a conversation Dr. Alexander and I had right after she was born.

It was her first or second pediatrician visit, and even today I can clearly picture the doctor standing over my tiny infant, listening to her heart (this time there was lots of discussion of that, with surgery in the offing) and feeling her abdomen for obstructions.

“You know,” he said, turning to me,  his hands on Sophie to keep her safe on the exam table, “I have another patient with Down syndrome. He is in third grade. He’s doing so well! Fully integrated in a mainstream class!”

And then he grinned.

At that point, I didn’t even know what integrated and mainstream meant. I just knew that there was a kid out there with Down syndrome who was thriving. Dr. Alexander said so. He was proud of him.

It was a tiny moment. I’m sure the doctor didn’t give it a second thought. But I lived off that conversation for years, thinking about that kid.

Yesterday, I filled Dr. Alexander in on Sophie’s accomplishments as he examined her — that she’s swimming, taking ballet, writing a play, that she’s mainstreamed in sixth grade.

“Really?” he said, turning from that same spot in front of the exam table,  his hands on Sophie to keep her safe. “Wow! That’s really something.”

He grinned.

After the exam, Sophie was allowed to pick out a sticker from the nurse, choosing from a chart displaying a half-dozen options. Somehow she talked her way into one of each, handing me Grover because she knows he’s my favorite. I smiled at the nurse and thanked Sophie, my mind elsewhere.

I was wondering, one day would another family come to see Dr. Alexander with a baby with Down syndrome and would he tell them, “You know, I have another patient with Down syndrome and she’s in sixth grade, and she’s doing so well!”

And would that mom grab onto that comment like a life line?

Even if Sophie hadn’t ultimately been mainstreamed in school, even if circumstances had prevented her from doing a lot of what she can do now, I think I’d still be incredibly grateful to Dr. Alexander, because as parents, we all need hope.

Think about your typical kid. When he or she was born, no one put any limits on what that kid would be able to do. No one questioned his or her worth to society, or assured you off the bat that this kid would never drive or have kids or leave your side. The sky was the limit. Yeah, as kids grow we realize that like everyone they have their strengths and weaknesses. But they enter the world with hope on their side.

That’s what Dr. Alexander gave me that day with the story of that third grader. That little boy would be 19 now. I never met him, never learned any more about him. I wonder how he’s doing. But to be honest, I don’t wonder too hard. I know life gets harder for people with Down syndrome as they get older (for all of us, to be sure, but particularly in this case) so I don’t want to know if he struggles with depression or doesn’t have friends or got leukemia.

I’ll always hold onto the image of that third grader, and I’ll always be grateful to Dr. Alexander.


Scroll
Party Hat

Down Syndrome and Junior High: Feeling Grateful

posted Wednesday September 10th, 2014

photo-408photo-408

photo-408

This morning an errand took me to the Broadmor school office. Sophie’s old school. I hadn’t pulled up to the school since her last day, and I wondered if I’d get emotional. There they were, just as we’d left them, the office staff and our beloved principal. He insisted on a hug even though I protested (sweaty from the gym) and then he ran back to his office because he had something for Sophie. 

Of course he did. He’d tracked down a copy of “Otherwise Known As Sheila the Great,” having heard through the grapevine that our poodle had consumed Sophie’s original copy. I told him how well school is going for Sophie (knock on wood, parent/teacher conferences are tomorrow, so that could all end in the span of a 5-minute sit down) and that we couldn’t have done it without him paving the way. He beamed. Me too. No tears. We promised to get together soon.

See also: From the First Day to the Last

Yesterday I heard on NPR that they have created a 3-D printer that can make an ear. How long till they can duplicate Mr. Fritch, and place him in schools all over the country? Even when things are going relatively well for Sophie I fret over a million things, but some days the universe pulls me back and makes me appreciate what we have — and we have it really, really good.

Here’s a recent post from one of the Facebook groups about DS that I follow. I read it and decided to focus (for today, anyway) on being grateful for Sophie’s situation — integrated with her peers, overseen by staff that communicate with me constantly.

Some days are just more emotional then others. My daughter started middle school this year. She eats breakfast at school but takes longer. It took them a week to tell me that she misses her first entire class (music/band) with her peers because she does not get done eating on time. I told them I will feed her at home then because I do not want her missing the few classes she has with her peers. Then I noticed on the school website that it is picture day tomorrow. Most parents would know this because order forms come home ahead of time. I called the office and asked if it was picture day tomorrow, she said yes, and I said I did not get an order form sent home. She said the one thing that I always dread “oh, I have them here in the office, we forget they are a part of us sometimes and I forgot to send them up to her special ed room.” That did not make me as angry is it made me sad. I had her transfer me straight to the principle to discuss how I want everything the regular ed class gets sent home with them to be sent home with her also. He was very apologetic but it doesnt change the fact that yes, they are forgotten at times. Her room is not even on the same floor as her peers. I hope the year gets better, it just started.


Scroll
Party Hat

Down syndrome and Ballet: Sophie’s Big Leap

posted Thursday September 4th, 2014

photo-407photo-407

 

Yesterday was Sophie’s first ballet class with a new teacher — her grandmother.

The nanny took her, but I snuck out of work early and hid in the hallway of the ballet studio, barely peeking my head above the observation window to catch a glimpse. Despite my attempts, Sophie saw me immediately, smiled and waved from her position at the barre, then immediately put her game face back on. She was not necessarily the model student — stopped at one inopportune moment to do the splits for the rest of her classmates and required a few reminders from her aide (and yes, she has an aide, an older student who redirects her as needed) but for the most part, as my mom called to report this morning, “She rocked it!”

I love the fact that my mom won’t take ‘em when they are little, she leaves that to the other teachers in the studio she’s owned for thirty-plus years, but I worried that Sophie would never climb high enough on the ballet ladder to make it to Ms. Susie’s weekday classes. And that if she ever did, that things wouldn’t go so well.

But from my limited vantage point at the window yesterday, I had to admit that Sophie didn’t look or act much different than the other kids. Her leaps are a little awkward, but she did catch air. Her tights were bugging her, requiring a lot of adjustments. And she did attempt to hug the teacher in the middle of class.

Fair enough: The teacher is her grandmother, after all.

Sophie danced her heart out. She knows her positions, followed directions, pointed her toes, and shimmied — but only when appropriate. (For the most part.) I sighed a happy sigh, standing there.

In a couple of weeks, another ballet school in town — the fancy one run by the local ballet company — is offering a series of adapted ballet classes for kids with Down syndrome. I asked Sophie if she wanted to go; she said yes immediately.

I have mixed feelings. Not long ago, someone on one of the Down syndrome parent groups posted a link to some program offered for kids with Down syndrome — something sports related, maybe, I can’t recall exactly what it was — and someone else replied that we are all always asking for our kids to be included. Why would we ever want to segregate them?

I see the point, and Sophie’s ballet experience is a great example. She’s had the chance to dance on giant stages with dozens of typical kids, kids whose mere presence  has swept her up, pushed her, made her better. Made her stronger, happy, included. But I’m curious about this ballet program for kids with Down syndrome. I admit I’m not sure why. Sophie wants to try it — so that’s enough for me.

Meantime, I can’t wait for next week’s ballet class with Gaga. And I know Sophie can’t, either.

 

 


Scroll
Party Hat

Best Buddies for Sophie: Down syndrome and Junior High

posted Tuesday August 26th, 2014

photo-406

Sophie is the most popular kid I know.

Just a few weeks into the new school year, I’m having trouble keeping up with my 11-year-old’s social schedule. Last Sunday she was invited to a friend’s house for dinner, and another friend asked her out for ice cream. Another pal asked if she can have a regular badminton date on Fridays, and she’s been meeting with another to write a play. She regularly texts and calls another dozen or so friends; she’s got sleepover plans in the works with several of them. Tonight she has a date with our next door neighbor to compare paint brush collections. She regularly begs me to schedule a time to watch Project Runway with another friend, and a mani-pedi with yet another.

Sophie treasures each of these friendships, and I treasure them as well. We should all be lucky enough to have friends like these. There’s just one problem. They’re all adults: two former nannies, her physical therapist, a family friend, a 60-something neighbor, her kindergarten teacher and the principal from her elementary school (yes, he promised her mani-pedis to celebrate their shared birthday).

Last week I asked Sophie if she’d made any friends in middle school. “Yes!” she told me. “Mrs. W.”

Her aide.

I get that it’s hard to make friends in junior high, whether you have Down syndrome or not. It took Annabelle years to feel comfortable at a new school, to find a group of friends. But I worry if it will ever happen for Sophie. Her gregarious and sometimes aggressive approach to friendship just isn’t going to fly with most of the tween and teen set. She’s different — and kids that age don’t want anyone to notice them, they are busy worrying about their own differences, stuck understandably in their own heads. And if they are intrigued by the idea of a friendship with someone like Sophie, they might be unsure of how to approach it. I know I would have been. (Still am!)

And so my stomach did a backflip when I got an email yesterday informing me that Sophie’s school is getting ready to launch an official Best Buddies program, started years ago by the Shriver family (of Special Olympics fame) to foster friendships between typical kids and kids with disabilities. Historically Best Buddies has been more common in high schools, but they are expanding to junior high. I’m thrilled.

Not everyone’s as into it. I was out for lunch a few weeks ago with a friend who has a 7-year-old with Down syndrome, and the topic came up. She’s not a fan; she doesn’t like forced friendships. I do tend to agree. But when Sophie was 7, she had no need for Best Buddies. She had — and still has — a bona fide best friend, the kind most of us only dream about. She and Sarah met in kindergarten and were attached at the hip (not literally, Sarah’s always had at least a foot on Sophie) through fifth grade — till they parted for different schools.

Here’s a radio piece I did years ago about their friendship.

I wonder if Sarah and Sophie would have become friends if they’d met today. Even at 5, Sarah was a very special person with a big heart, but she was also a little kid unencumbered by puberty and the insecurities that come along with it. Their kindergarten teacher knew to nudge the friendship along, but these days there’s little time for social interaction in school — no recess, a super short lunch hour. Some forced — or rather, encouraged — interaction might be in order.

I know what you’re thinking. You’re thinking that I worry too much. As usual, Sophie has already proved me wrong. Yesterday afternoon she came home with a phone number for a new friend, one  her own age — a girl in her science class. So maybe we won’t need Best Buddies. But something tells me we will.

In any case, the biggest challenge will be working more play dates onto Sophie’s already-full dance card.


Scroll
Party Hat

photo-405

This morning my husband, daughters and I each took the ALS Ice Bucket Challenge. I can think of worse ways to spend 15 minutes on a Saturday.

There’s been a lot of curmudgeonly talk about this latest social media phenom, and I’ll admit to feeling a little icy toward it myself in recent days, as my Facebook feed clogged with sappy, happy, insipid videos. But when my freshman college roommate challenged me yesterday afternoon, I knew I’d do it. And now that I have, I’m really glad.

Yes, there are probably much better ways to educate the public at large about serious diseases and disorders, better ways to raise money, better ways to treat serious stuff the way it should be treated. I’m not into pink candy for breast cancer or even Buddy Walks to celebrate Down syndrome. I think the best way of educating people about my daughter Sophie, who happens to have Down syndrome, is to simply live our lives (sometimes out loud on social media) and hope she can teach a few people firsthand about her extra 21st chromosome.

I imagine it’s not really the same for people with ALS.

If the ice bucket thing isn’t the best way to raise awareness about and money for ALS, it can’t be the worst. Yes, our videos this morning were as trite as any I’ve seen, but what you didn’t see was the family discussion we had about ALS before and after, or the check we’ll write. There was a real teaching moment when Sophie realized this was about something other than Down syndrome — that other people have different kinds of challenges in life.

And it was a good reminder that sometimes, we just need to get over ourselves.


Scroll
Party Hat

Uniform Behavior: Down syndrome and Junior High

posted Tuesday August 12th, 2014

photo-404

Another big change in junior high: a strict dress code.

The first couple days of school, Sophie was excited to wear her navy polo dress or a shirt and a khaki skort. By day three, she was rebelling — wanting to wear forbidden leggings, refusing to tuck in her shirt — and by the first day of the second week she had completely lost her shit.

I get it. It was picture day and Sophie wanted to dress up.

“No, sweetie,” I told her for the second or maybe it was the hundredth time, trying to be patient but ready to lose it myself. “You have to wear your uniform. How about this dress? And be sure to put black shorts on under it and please wear these shoes.”

The promise of a borrowed necklace and a little make up got her in and out of the shower, but by then we were officially late, so when Sophie emerged from her room with a gray and white tie-dyed, sequined vest over her polo dress, I gave up.

“Fine,” I said, not very nicely. “They’ll make you take it off at school.”

I had to admit she looked pretty cute. She practically cooed when I pulled out the mascara and jumped at the chance to borrow my new lip gloss, smearing it all over her mouth. She came home with the vest, necklace and lip gloss crammed in the bottom of her backpack.

By this morning, she just seemed resigned. I put her outfit on the couch without a word, and she put it on.

Uniforms are the least of Sophie’s worries — or they should be. But for both of us, I think, the school dress code sends a bigger message: conform or go home.

Here’s a piece I wrote about uniforms that ran on KJZZ — the Phoenix NPR affiliate — the week before school started. 


Scroll
Party Hat

Down syndrome and Junior High: Here We Go

posted Sunday August 10th, 2014

photo-403

All summer long, Sophie was obsessed with plays — buying them, reading them, casting them.

Because our local bookstore doesn’t stock any kid-oriented scripts, Sophie’s collection is a little odd for a tween: Our Town, the collected works of Neil Simon, and The Miracle Worker. Odder still for a kid with Down syndrome. I’m not honestly sure how much of this stuff she can actually read and comprehend. Enough, I figure.

Enough to ask some good questions.

“Where are all of Helen’s lines?” she wanted to know one day last week.

When I explained that Helen Keller doesn’t have any lines, and reminded Sophie of the details of the play — which we saw this summer — she shook her head and informed me she’d be writing some herself because she intended to play Helen, and it wouldn’t do for Helen to not have any lines.

“And Mrs. W. will be Annie Sullivan,” she told me.

“Perfect,” I said, smiling to myself.

Mrs. W. (we typically call her by her entire name, but I won’t here) has been Sophie’s instructional aide at school for the last three years, grades 3-5, and last week she joined her for sixth grade. She is the reason Sophie is being mainstreamed at our neighborhood junior high, in regular classes with typical kids.

That is a pretty strong statement, but it’s true. There is no way I could have sent Sophie off to school this way — absolutely no freaking way — without this woman by her side.

And not by her side, because that’s the beauty of Mrs. W. A lot of people will tell you that a one-on-one aide is a bad idea, that federal law prescribes that a kid with a disability be placed in the “least restrictive setting” and that an aide automatically precludes that from happening. They are wrong. What they mean to say is that an aide is automatically expensive. Very expensive. Guilt-inducingly expensive, if you are me.

And, if you are Sophie with Mrs. W., worth every penny of the government’s money.

We held back on asking for an aide for Sophie until third grade, at which point I hired a lawyer, deciding we had to make this happen quickly and decisively. To my surprise, the plan worked. Boom. Sophie had an aide. And to be honest, I knew I was playing with fire. The whole thing could have been a disaster with the wrong person. But along came Mrs. W. — they should use her as a role model in training aides (which doesn’t really happen, from what I can tell). Mrs. W. is experienced in education, calm but firm and knows when to push in and more important, when to pull back.

She also knows Sophie. As elementary school drew to a close, I spent several panicked months trying to figure out where Sophie should go to junior high. The neighborhood school was emerging as the only real viable option, but I was terrified of what I’d heard: more than 1,000 kids and not much history mainstreaming the way we wanted to mainstream Sophie.

And then one day I ran into Mrs. W. in the hall at the elementary school.

“You know,” she said quietly, “I’d be willing to go to junior high with Sophie.”

I got in the car and called my mom.

“Do you think I can I stop looking for a school now?” I asked, feeling the weight of Sophie’s future — her immediate one, anyway — lift from my shoulders. For the first time in weeks, I could breath.

Mrs. W. has been at every planning meeting. She asked for a copy of Sophie’s schedule so she could contact each of her teachers before the year even started. We attended “meet the teacher” together and coordinated morning drop-off and afternoon pick-up.

This school is very good. Better than I expected. Sophie has choir and visual art every day (her sister was jealous of the latter, which she doesn’t get at her fancy charter school) and from the principal down, as we entered the school year the staff was kind and responsive. The gifted kids are segregated in their own private building, but all kids at the school are considered on the path to college and the stress of that challenge shows on the faces of the adults charged with making it happen. Sophie’s school ID says “2025 college graduate” on it.

By the end of the first week of school, I was feeling cocky. Things are going so well, I marveled Friday afternoon as I walked up to the office for the first team meeting of the year — a gathering of administrators, therapists and teachers. Walking in, I realized that the only person I really knew in the room was Mrs. W. I took a seat next to her and took paper from my calendar to take notes, trying not to let anyone see how nervous I was.

Introductions were made around the table, and the first to speak was a teacher wearing a purple tee shirt with the slogan, “I’ve got college on the brain” printed on the front.

So you have Sophie here for the social aspects, not academic, right? she asked.

Here we go, I thought.

Well, I said, stammering a little, yes, sure, socialization is important. But I don’t want to give up on academics off the bat. Wouldn’t there be modifications made to the curriculum?

This woman just wasn’t sure about that. Understandably, it was the end of the first week; she didn’t know Sophie well, she explained. But then she went on, clearly having already made up her mind about my kid.  She explained that her class is very fast-paced, that by the end of the first semester, the students will have learned 6,000 new vocabulary words. That they were expected to take a lot of notes. The text book is tough to read, she said, adding that she’d reviewed Sophie’s scores and noticed her reading level was in the second to third grade range. She just didn’t see how this would work. Furthermore, she said, Sophie had actually gotten up out of her seat once during the week and headed for the door.

I felt my face get hot. I knew Sophie had slipped below grade level a little in her reading, but I didn’t know how much. No one had ever told me that. I didn’t know what to say. “Don’t judge my kid by her test scores” seemed a little defensive. We were one person in and I’d lost my way in this meeting, begun to doubt this entire decision. I looked at Mrs. W.

She jumped in without missing a beat, explaining gently how Sophie’s curriculum had been adjusted during elementary school so that, for example, she might not learn every vocabulary word, but the most important ones. Heads nodded around the table.

Oh, and the door incident? Mrs. W. explained that. Someone had knocked, and Sophie had gotten up to answer the door. She’d returned to her seat as soon as she was asked to.

We all agreed that it was too soon to make any final decisions about modifications, that this was just a meeting to get acquainted and open lines of communication.

The rest of the meeting went pretty well, and I tried to focus on what the other teachers were saying as that first teacher’s words played on a loop in my head. I finally felt better when we got to the language arts teacher, new to the school this year.

Now, I AM NOT A RELIGIOUS PERSON. If you have read this blog at all, you know that. But this was one of those moments that makes you feel like the universe is looking out. The language arts teacher, who had slipped into the meeting late and is new to the school this year, explained that before becoming an elementary school teacher, she had two primary interests: teaching ballet and researching Down syndrome.

At my behest, she gave a quick but lovely explanation to the group of what it means to have Down syndrome — of how it affects every bit of your physical self, of what the cognitive challenges are, and of how much people with DS can accomplish. She told everyone how thrilled she is to have Sophie in class, that she had already purchased a wide-rule notebook to accommodate her handwriting challenges and that while she gives pop quizzes, Sophie would always have time to prepare. She feels confident, she told the group, that Sophie will succeed.

The school psychologist suggested that perhaps the language arts teacher could give a presentation about Down syndrome to the entire staff at the school. I think that’s a great idea.

After the meeting, I looked around for the language arts teacher. I wanted to talk to her more about Down syndrome, and ask her about her ballet training. But she’d disappeared, almost like an aparition. Instead, the teacher in the purple shirt scooted her chair closer. She wanted to tell me all about her own background training in special education and how, in fact, she trains special education teachers at a nearby university. (It’s amazing to me how often I encounter teachers and administrators who want to tell me about their special ed background — and how not all but many of them have not only left special ed but seem to have no idea what it should entail. In fact, “My training is in special education” has become my biggest red flag.)

I kept my mouth shut and tried to smile. It’s going to be a long year. Friday was an important reminder that it’s not going to be easy.

Thank goodness Mrs. W. has been cast in the supporting role.

 


Scroll
Party Hat

I met a woman yesterday. She and I have a lot in common.

We both live in metro Phoenix, both write, both have blonde hair. We both have 13 year old daughters and like the same coffee shop.

One big difference: This woman is pregnant with a baby that has Down syndrome.

I was never pregnant with a baby that has Down syndrome. Well, yes, technically I was. But I didn’t know it. If I had known, I’m afraid that I know what I would have done.

When I was pregnant at 36 — the same age this woman is now, by the way — things were different.  A decade ago, typically, no one tested you at three months; more like five or six.

“What are you going to do, have a late term abortion?” my husband asked after an initial test showed a slight chance the baby had DS. That scared me straight; I knew the answer to that question, if not to many others. I turned down the amnio, which would have provided the definitive answer. A few days later, an ultrasound tech told me my baby most definitely did not have Down syndrome. I took her word for it and never looked back — til I woke up in the recovery room after a C-section and questions arose.

I was never pregnant with a child with Down syndrome. This woman I met, she knew so early, by 12 weeks, that her baby has it. A blood test all but confirmed it; another test made it certain. She could have done it. It would have been simple. She’s not religious. But something else tugged at her.

She and her husband decided to keep the baby.

I am in awe of this woman.

We met for coffee yesterday, and driving over to meet her, it occurred to me that I’ve never met another woman pregnant with a baby that has Down syndrome. It’s estimated that 95% of people who know about it terminate, she said.

“It’s the Cadillac of birth defects,” I told this woman yesterday. “Have you heard that?”

She smiled. She’s nervous. Brave and awesome, but nervous — and understandably. She’s known people with Down syndrome, she told me, but she doesn’t know what it will be like to be the parent of one.

“It’s the best thing that ever happened to me,” I told her, meaning every word, even as junior high looms and I worry about early-onset Alzheimer’s and everything in between. I also admitted that it took me a really long time — years and years — to come around to feeling that way.

We agreed that it’s gross and insulting when do-gooders refer to babies with Down syndrome as angels. But driving away, I couldn’t help but feel like this woman is a little bit of an angel herself. By contrast, I am an accidental parent, a poser, a fraud.

But that woman, she’s the real deal. Lucky baby.


Scroll
Party Hat

Where Are All the People with Down syndrome?

posted Tuesday July 22nd, 2014

photo-402

I will be the first to admit that I’m not good at math. And this is a math question. Partly, anyway. I think it begins with math — but I’m not sure it ends there.

Where are all the people with Down syndrome?

I managed to schedule my summer travel so I arrived home in time for the hottest week of the year in Phoenix. That’s okay, I’m actually a little sick of other places, eager to sleep in my bed, eat from my fridge, hug my poodle and catch up on bad TV. It’s been a good summer. I’ve hunted for sand dollars in La Jolla, caught up with old friends in LA, and tracked down what might be the only thrift store in Maui. I saw the Kara Walker sugar installation in Brooklyn, scarfed a knish on the Lower East Side and determined that Harlem is not yet gentrified (at least, not the part I saw).

Here’s one thing I didn’t see during my summer travels: a single person with Down syndrome. I was in crowded airports, restaurants, stores, museums and resort pools, on crowded beaches and streets. Not one. And it’s not because I wasn’t looking. I was. Early on, Ray and I determined that no one stares as hard as a parent of a kid with Down syndrome. Does that guy have it? That woman? That baby?

No. Not this summer. And here’s where the math comes in. If 1 in every 700 live births results in Down syndrome — the most common genetic disorder — then why don’t I see more people with it?

Where are all the people with Down syndrome?

I know the answer. They are at Disneyland. That is where I see people with Down syndrome on a regular basis — Disneyland and, sometimes, at the mall on a weekday morning when the group homes take their field trips. Nowhere else. Not as a rule.

And Facebook. I see them on Facebook. In fact, my feed is so loaded with friends and groups associated with Down syndrome that it’s easy to forget that many days, out in the world, Sophie is alone. The only one. Days go by when we don’t even refer to Down syndrome. (Well, maybe a day at a time.) Sometimes out in public, people stare. Often not. She’s tiny enough, I think, that many people think she’s just young. To be honest, I don’t know what they think. I watched her in the pool in Hawaii last week, a little girl in swim goggles and a polka dotted bikini, turning somersaults in the water til she has to stop to catch her breath. By the end of the trip, strangers (to me, anyway) we passed in the resort lobby were greeting her by name.

Sophie is only 11. Will there come a day when we’re done taking her along? Will there come a day when she can travel alone? Whenever I pose a question — about driving, living independently, getting married — well-meaning friends admonish me for being negative. But scanning crowds, looking for people with Down syndrome out there living their lives, I don’t get a lot of positive feedback.

Thousands? Tens of thousands? More? I think about the number of faces I passed over the last several weeks — at the 9/11 fountains, at Strawberry Fields, outside Grand Central Station. On the Venice Beach boardwalk, at the Denver airport. Not one.

When the girls were really little, Ray and I took them to the petrified forest and, unsolicited, a ranger glanced in the back seat then gave us a brochure, told us that we could get Sophie in free if we wanted. Any national park, her whole life.

“They do that so people take them with them, you know,” she said. She didn’t mean anything by it (and I think the park service might have discontinued the program) but I still think about it, all these years later.

Where are all the people with Down syndrome? I know there’s an answer to the math question. Beyond that, I’m not sure I want to know.

Saturday night, Ray, Annabelle, Sophie and I packed pillows and blankets, charged electronics and bought snacks for a red eye flight home. We sat in the crowded terminal, stood in a long line, finally took our seats near the back of the plane. As I got ready to sit down, I noticed a young man sitting just behind Sophie. I know his name was Miles, because it was embroidered on his backpack. He had wire-rimmed glasses and ear buds and looked more like Sophie than she looks like any of her family.

“Hey Ray,” I said, cocking my head slightly and smiling. He looked, then smiled back.

I took my place in the middle seat, a daughter on either side, and pulled the blanket over all of us, feeling inexplicably happy.

“A boy with Down syndrome sitting right behind Sophie!” I marveled, as the ativan kicked in and I drifted off. “What are the chances?”


Scroll
Party Hat

This is What 13 Looks Like

posted Thursday July 10th, 2014

photo-401

Annabelle turned 13 today.

For the last several weeks I teased my first born, asking if she was planning to turn on me the day she became a teenager.

“Eh, maybe,” she replied last week, tossing off one of those looks I used to give my own mother several times a day, long before Resting Bitch Face became an excuse for a bad attitude. I was terrible to my mom for the duration of my adolescence, although it should be noted that for the past several decades, she’s been my best friend, role model and (almost) daily confidante.

I write more about Sophie than Annabelle on this blog — I cut back on AB a while ago, wanting to protect her privacy, but allow me to indulge today, on the anniversary not only of her birth but of a day a surgeon sliced me across the middle, revealing most of my organs to my husband (who didn’t look away quickly enough and is likely scarred for life, and we’re not just talking about a C-section scar) and pulling out a giant, colicky baby. And that was after the epidural didn’t work and that was after more than a day of labor.

Not that I’m counting.

I made a lousy pregnant person, refused to even consider natural childbirth and never did get the hang of breastfeeding. I’d never changed a diaper before Annabelle was born. I didn’t know what to do with her. Or with myself. I chucked my copy of “The Baby Whisperer” against the wall when she was three days old, already a failure, I decided.

But we found our way, Annabelle, Ray and I, and while I’m not at all religious I do wonder if the universe was preparing us for Sophie — a daughter who, in many ways, will never grow up — by making her sister such an old soul.

Annabelle is quiet and kind. She had a recent growth spurt — we almost see eye to eye now — but she’s still among the smallest in her class. This bothers her less than it used to. She is a ballet dancer. She loves to draw. She wants to learn how to surf. She can play Silent Night on the ukelele. She has a giant collection of nail polish, though she rarely wears makeup. She’s the most adventurous eater in the family; the other night she ordered a crazy-huge bowl of Vietnamese soup with who-knows what in it, and slurped it down. Her birthday dinner request: Ethiopian food.

She adores her sister, who loves her back — and also gives her a hard time. Mostly, she doesn’t mind.

Annabelle’s birthday list included items like thread bracelets and a nail care kit, which didn’t seem adequate to mark something as auspicious as entrance to the teen years. She did not ask for an iPhone. In fact, Ray and I were at such a loss for gift ideas that I piled the kitchen table high with hair accessories and baking books this morning, and we each gave her a trip — Ray’s to the Grand Canyon, mine to San Francisco.

She was delighted. At least, she acted that way — and as of 8 am, she hadn’t turned on me. Not yet.

Apparently, I wasn’t the only one a little worried about Annabelle becoming a teen. Last night, driving home from Sophie’s swimming lesson, she turned to me and asked, in a small voice, “Mom, even though I’m going to be a teenager tomorrow, will you still treat me like a little kid when I need you to?”

“Yes,” I said, turning my head to hide the tears. “Of course I will.”

Always.


Scroll
Amy Silverman
Amy Silverman has two beautiful daughters, Annabelle and Sophie. Sophie has Down syndrome. These days, Amy divides the world into two groups: the people who adore Sophie, and those who don’t look twice. Amy has to remind herself that once upon a time -- when it came to people who are "different" -- she fell in the latter category. And therein lies the blog... Read more
Scroll

Archive

Scroll
All content ©Amy Silverman | Site design & integration by New Amsterdam Consulting