Party Hat

The Benign Mitzvah

posted Thursday November 6th, 2014

 

I’ve been spending quite a bit of time in synagogue.

No, I haven’t found religion. It’s bar/bat mitzvah season. Those kids my friends and family had 13 (or so) years ago are all grown up (sort of) and many are participating in the traditional coming-of-age ceremony for Jews.

I love watching these kids get up in front of dozens of people and practice what others have preached for centuries — continuing traditions, creating their own community, demonstrating pride in their heritage.

I want that for my own kids. Ray agrees. He was raised Catholic, but abandoned that ship long ago and we’ve raised our girls as Jews — if you count apples and honey at Rosh Hashanah and seders with themes like “Heavy Metal Seder” and “Passover on a Stick” at Passover. They’ve had no formal Jewish education; they are certainly not ready for bat mitzvahs.

And yet, if it’s going to happen, it’s time. Past due, actually.

So this afternoon, I have an appointment with a rabbi. I’m starting at the temple where I was bat mitzvahed. I called last week to get on the rabbi’s schedule and the receptionist asked me to spell my last name. I started very slowly then stopped and said, “I guess I don’t have to spell so slowly for you?”

She laughed. In Phoenix, one grows accustomed to spelling an “exotic” name like  Silverman several times — no one ever gets it right. I often find myself translating Yiddish terms,  explaining even the most basic Jewish holiday. My high school was lily white; as a Jew, I was the minority. I still am, most of the time. So are my girls.

Before Annabelle was born, Ray told me, “I want the girls to know they are Jewish. I don’t want someone else telling them.”

I loved that. But actually educating Annabelle about Judaism has been awkward, since she announced when she was a toddler that she doesn’t believe in god.

No surprise, springing from our firmly agnostic household. I stopped believing when I was in first grade — I remember where I was standing in the Temple Solel arts and crafts room, shellacking a challah or gluing macaroni into the shape of a Star of David, when I suddenly stopped and thought, “Oh, this is all supposed to be about god? Well, that’s ridiculous.”

I did enjoy the arts and crafts, though. And the music and feeling of community. But after my Bat Mitzvah, as I like to tell people, I took the Lucite and ran. (If you were around in the mid 70s, you’ll get the joke.) My religious education ended there — and I was guilty about that for a long time. I’m not anymore. I no longer went to services, and yet, my Jewish identity remained. I’m proud to be Jewish, and I still remember the words to the prayers, which I murmur along during all those bar and bat mitzvah ceremonies, feeling connected — to something, if not a traditional sense of god.

It’s hard to imagine Sophie having a bona fide bat mitzvah, which is on my list of things to discuss with the rabbi today. I have talked about it with the girls, and they decided they’d rather have a b’nai mitzvah, which means two people doing it together — and I love that idea. Annabelle says she doesn’t want the spotlight all to herself, she’d rather be there to help Sophie. Sophie says she’ll leave the Hebrew to Annabelle. I think they will both find meaning in studying Judaism and learning a torah portion (a story from the Old Testament), and Sophie’s already planning her “mitzvah project,” which involves giving back to the community in some way.

For my part, I like the idea of educating our friends about our heritage, putting together a program that explains the meaning behind the traditions. I haven’t seen a copy in years but I still remember the program my mom made for my bat mitzvah; she cut out tiny illustrations from The New Yorker and put them between the prayers and it made me feel so special.

Ray has been okay with it so far. “Huh?” he asked, when I told him the latest plan. “A benign mitzvah?”

That sounds about right to me. This morning I called to confirm my meeting with the rabbi. “Wait a second,” his secretary said. “He wrote it his calendar himself. Amy Silverstein?”

I’m not religious but I’m big on signs, and that might be a sign that this won’t be the right place for us. We may go rogue — but we’re going to do it, one way or another.  I’ll let you know when we have a date.


Scroll
Party Hat

Always Look a Gift A+ in the Mouth

posted Wednesday October 22nd, 2014

reportcard

I dragged myself into the house the other night after work, exhausted, preoccupied with how quickly I could make dinner and hit the couch, when Sophie stopped me in my tracks — literally.

“Look!” she said, pulling me over to the refrigerator, where she and the nanny had posted Sophie’s first junior high school report card.

“Can I sleep in your bed?” she asked. That’s Sophie’s question these days, pretty much anything might qualify her for her favorite reward, an all-night spot between her parents.

“Wait a second, let me see this,” I said, slowly digesting the grades. A B+ in Science, an A in Chorus, an A+ in Art. Okay.

But an A+ in Language Arts? I  knew Sophie had done very well on several vocabulary tests, learning words like anthropomorphic and sidle. Then I thought about the parent/teacher conference I attended a few weeks ago, and how the language arts teacher looked at me with sympathy and suggested that I buy Sophie a few books from the Madeline series so she gets the hang of actually finishing a book, rather than just collecting age-appropriate chapter books she’ll never read.  Now an A+?

And an A+ in math? Please. As far as I know, no one on either side of our family has ever gotten an A+ in math. And I’ve watched Sophie struggle with simple addition, let alone multiplying fractions, the current curriculum in her class.

An A+ is, I suppose, one way to keep an annoying parent from calling, right? In my case, not so much. For me, a grade like that is a red flag, a sure sign that my kid is your mascot, not your honors student. On the rare occasions I’ve taught over the years, I’ve avoided the A+ like the plague. Really, who’s deserving of that? And what incentive is there to go on, to improve?

And yet — that’s a pretty freaking awesome report card, right?

I stood in front of the fridge, resolving the call the teachers, but knowing I wouldn’t — not for a little while, anyway.  Sophie deserves to bask in the glow. I’ll take a little of it, too. I’ve never been the type to believe in an A for effort; in my world, you better put out the work befitting of the grade. But I’m often reminded that Sophie has rocked my world — in a good way.

I turned from the refrigerator and reached down for the littlest sixth grader ever, pulling her into a hug.

“YES!” I said. “You can sleep in my bed tonight. I couldn’t be prouder of you!”

And I meant it.

 


Scroll
Party Hat

Sneakers

posted Wednesday October 15th, 2014

uke

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)


Scroll
Party Hat

The Specials: Happily Ever After?

posted Monday October 6th, 2014

specials

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.


Scroll
Party Hat

Small Kindnesses

posted Wednesday October 1st, 2014

folders

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.


Scroll
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
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