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Party Hat

Sneakers

posted Wednesday October 15th, 2014

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Last week, Annabelle and her good friend Sophia performed a song in front of their entire school. I’m partial, but I can’t stop watching the video — or asking Annabelle to perform the song for me again or to write down the lyrics. Annabelle wrote the song (among others) and taught herself to play the ukulele this summer. I love that she has music as an outlet — particularly since Sophie shuts me down every time I so much as hum. Here are the girls’ audition video and the song lyrics. I hear that next they are planning to perform a song by Sophia. I can’t wait.

SNEAKERS

People gathered in a park
all the sneers, all the remarks about people’s sneakers oh oh.
Some were weaker, some were cheaper, some would only last a week
or some were just a little bit old fashioned.
But they all run fast,
they all won’t last forever.
And I’ll bet you that they’ll bring someone together.

(CHORUS)
Cause everyone needs everyone
and everything needs everything.

People gathered in a mall
all whispering to the wall about people’s purses oh oh.
Some were weaker, some were cheaper, some would only last a week
or some were just a little bit old fashioned.
But they all carry,
they all bring stuff wherever.
And I’ll bet you that they’ll bring someone together.

(CHORUS)
Cause everyone needs everyone
and everything needs everything.

ukeWe all depend on the end
and we all started at the heart.
Until we think about our plan to understand this world
then we all put on sour faces and insult other people’s sneakers.
Is that what this is all about now?
(REPEAT)

(ukulele solo)


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Party Hat

The Specials: Happily Ever After?

posted Monday October 6th, 2014

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From almost the beginning, I have had one wish for Sophie: that she get married, have great sex and live happily ever after.

I didn’t — and still don’t — have the career thing worked out, or the living situation, or a lot of other things I agree are equally important. (And yeah, yeah, all up to Sophie. I know. I’m a control freak.) But I know I want Sophie to find her soul mate, someone who can be the recipient of all that love. (As long as she saves a cuddle for her mother.)

I want the same for her older sister. But I’ve always figured that with Annabelle, it would be more complicated. I know from my own experience that I tend to overthink a lot of things in life — particularly love. I envision Annabelle having the same struggles.

But not Sophie.

I’m beginning to see how naive I’ve been.

As you might imagine, from almost the beginning I’ve latched onto the occasional stories you see in the paper about couples with Down syndrome (or other developmental disabilities) meeting, falling in love, and living happily ever after.

At least, I assume things end well, because I haven’t ever run across a follow up. Not that I’ve looked so hard because to be honest, I’ve enjoyed these love stories, and the fantasy that comes along with them.

There was a terrific example on the front page of yesterday’s New York Times. I read it while I was getting a pedicure, gobbled up every word, shed a few tears. You really should read the story, regardless of my obsession with the topic – it’s a wonderful piece of journalism.

And it ended with a happy couple. Just how I like it.

I put the story down with a satisfied sigh, but something was nagging at me. It was The Specials. The Specials is a reality TV show based in Brighton, England — think The Real World, but with people with Down syndrome (and one with Williams syndrome, an intellectual disability somewhat similar to autism). Oprah’s network aired a marathon of episodes of The Specials on Memorial Day weekend, and I taped them — then binge watched them.

It was a car crash. I couldn’t look away. Typically, I’m very careful about getting too much of a glimpse of the future — rather, Sophie’s future. I don’t linger with the older women at Special Olympics practices, don’t frequent support group meetings. I even resisted Glee for a long time. But I’m a reality TV junkie and I fell hard for The Specials, even though it was hard to watch at times.

The main characters are young adults in their early 20s, finding their way in college (sort of — life skills classes), work (mostly sorting in the back of a thrift store) and love. They live together in a very pleasant group home that appears to be a perfect setting; they travel frequently and the staff only appears briefly but seems lovely.

In a lot of ways, the show is good. Probably the best case scenario even, right? But the relationships depicted feel forced and faked and none of them seem to work out so well. I could be reading things wrong, but it never felt like any of the people in the show even came close to understanding what it meant to fall in love and have a significant other.

That could be the perils of reality TV, for sure. Or it could be Down syndrome. In any case, it was too much for me. Ray would walk back and forth past the living room as I watched, stopping to shake his head. “Don’t watch that,” he’d say. But it was too late. I finished the last episode, and I haven’t been able to make myself delete them off the DVR. In fact, I invited a friend over to watch them again with me, so we can compare notes and see if our kids with Down syndrome seem like those kids with Down syndrome.

Tea leaves.

Sophie is not ready for a boyfriend. She’s still madly in love with Niall from One Direction (she claims he stared at her for the entire concert she attended last month). That’s fine with me. Watching The Specials, I realized that love will be as hard for her as it is for any other young person. Maybe harder.

And so maybe The Specials did me a favor. I’m not sure. I’m too close. You should watch it and tell me what you think.

For now, I think I’ll stick to newspaper stories.


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Party Hat

Small Kindnesses

posted Wednesday October 1st, 2014

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The other day I opened Sophie’s school backpack and noticed she had a new set of folders — shiny, carefully labeled with each of her classes and in her favorite themes, kittens and nail polish. Her aide did it. She didn’t ask, or make a big deal out of it. She just did it, knowing Sophie would love it. And she did. Me, too.

A small kindness. There have been many, so far, as Sophie’s stuck a toe into junior high, a time and place typically considered the worst kind of viper pit. Not for Sophie, not so far. I get that we’re only two months in; there’s plenty of time left for problems, and we’ve had a few bumps so far. But not what I expected, certainly not what I feared.

My biggest fear, after safety, was friendship. Would Sophie wander around alone (with her adult shadow) — head down in that typical Down syndrome stance, with (horror) her thumb in her mouth? Would anyone talk to her? Would she make a real friend? I got an inkling things would be okay even before the first day of school, when we walked into the office to drop some paperwork off with the nurse and a kid I’ve never seen called out, “Hi Sophie!”

Even at a new, strange place, people know Sophie. And on the few occasions I’ve been on campus, it’s been the same. Kids and adults know her, seek her out, if only to say hello.

And beyond hello? It’s going more slowly, understandably. Sophie does still eat lunch every day with an old friend from elementary school who also happens to have Down syndrome. But a note came home the other day from a new girlfriend looking for a playdate. And I hear there’s a boy in Sophie’s art class who carefully arranges all of her materials each day so they are ready when she arrives.

A small kindness, and one I hope I didn’t end after Sophie proposed marriage to this boy.

Sophie has attended her first school dance, performed in her first junior high choir concert and later this month she’ll try out for cheer. The school has started a Best Buddies program; in a couple weeks she’ll be matched with her buddy. Sophie’s teachers report that she pays attention in class (probably not all the time) and raises her hand to answer questions posed to the group. She got a C on a recent science test that she took with no modifications. She still struggles in math.

This school has embraced my little girl. I called with a concern the other day, and I received a call back before day’s end from not just one administrator, but a group: the principal, vice principal, school psychologist and sixth grade team leader. The matter was quickly resolved, and I thanked them (profusely) for being so responsive, and so welcoming to Sophie.

“She’s already taught us so much,” one of them said with a happy sigh.

For her part, Sophie is still not so sure about junior high. Every morning, it’s a struggle to get her into her uniform and into the car, and when we drive past the turn off for the other neighborhood junior high — the one her best friend and most of her former classmates attend — she tells me, “I want to go to Sarah’s school.”

When we pull up to Sophie’s school, her sweet aide comes right to the car to get her. But she doesn’t want to get out. Sticks her thumb in her mouth, puts her head down, mutters that she’s tired. Junior high is really hard. I imagine the energy it takes Sophie to wind up and get going, to keep her thumb out of her mouth, her head up. Some days, kitten folders just aren’t going to be enough of a motivator.

After I drop her off I drive to the gym, and I will admit that I, too, have trouble getting out of the car to start my own day.

I hope sixth grade gets easier for Sophie, but really, I have to admit that she’s got it pretty good, hit the middle school jackpot. How do I explain to her that I’ve never encountered a kid — special needs or not — having such a good junior high experience?

For now I’ll focus on the small kindnesses, and hope that someday Sophie can, too.


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Party Hat

Well Check

posted Friday September 26th, 2014

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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.


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Party Hat

Down Syndrome and Junior High: Feeling Grateful

posted Wednesday September 10th, 2014

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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.


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Down syndrome and Ballet: Sophie’s Big Leap

posted Thursday September 4th, 2014

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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.

 

 


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Best Buddies for Sophie: Down syndrome and Junior High

posted Tuesday August 26th, 2014

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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.


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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.


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Uniform Behavior: Down syndrome and Junior High

posted Tuesday August 12th, 2014

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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. 


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Down syndrome and Junior High: Here We Go

posted Sunday August 10th, 2014

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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.

 


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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
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