Kids Can Change the World or Lisa Goes to Science Camp

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We don’t even have to try,

It’s always a good time.

Owl City—Good Time

My memories of 7th grade provoke a visceral response.  Awkward and insecure, I sought acceptance through conformity, applying baby blue crème eye shadow thickly from a lipstick tube, battling my naturally curly hair into something resembling Farrah Fawcett’s, and walking the halls with fake nonchalance, clutching my Partridge Family Trapper Keeper to my chest.  None of it worked. I was unpopular and self-conscious. I think it was actually the worst year of my life. So recently, when the necessity arose to attend 7th grade science camp with Sydney, my thought was, “I wonder if there’s somewhere I can get alcohol within walking distance.” 

I went, not as a chaperone, but as 1:1 support for my special needs daughter; the school could not provide a 24-hour para for an extracurricular activity. If I didn’t go, she couldn’t go. Short of swapping bodies with my 13-year-old daughter, ala Freaky Friday, I lived the life of an early adolescent for three days.

“Are you excited, Syd?!” I asked, as if she hadn’t been telling everyone who’d listen.  Excited was probably not the word I’d use to describe my state of mind, but I steeled myself and climbed aboard the big yellow school bus packed with chattering, giggling girls, their cumulative noise already bouncing off the tin walls of the chassis.  Sydney and I squeezed past arms and legs spilling into the aisle until we reached an empty seat.  “Whoa, It’s hot in here,” I thought, as I clicked my window down, notch by notch.  I wrestled my bag into the seat on the wheel well and anticipated the 90 minute ride ahead. Talking to myself, I said, “You can do this–it’ll be good for the kids,” and with one look at Sydney, I knew there wasn’t a choice.  “Mom, take a picture of us and post it on Facebook,” she said, posing with her friends.

Once on the road, the massive vehicle jostled over the highway and careened around the curves.  “Where are the seatbelts on these things?!” I fretted. The girls were oblivious and carefree, bobbing along like they were moving parts.  Air whipped through the windows, creating a wind tunnel.  The girls just shouted over it.  I used relaxation techniques; “Breath in and lighten—OMG, that’s loud!  Breathe out and soften—How much longer?”  After an hour my head throbbed.  “How am I going to make it through three days?” I silently repeated the mantra I was given by a good friend who is also a special-needs mom, “It’ll be good for the kids.  It’ll be good for the kids. It’ll be good for the kids.

Then, out of the random cacophony, sweet soprano voices merged into a recognizable melody:

“Hey, I just met you, and this is crazy,

but here’s my number, so call me maybe.”

I had to smile in spite of my crankiness. They sang the well-known lyrics with gusto, then trailed off, mumbling, until a few moments later, someone led out with a new tune.  Sydney faced into the aisle, part of the camaraderie, and sang along, song after song; having the time of her life.

The highway eventually gave way to gorgeous rolling hills and revealed a sprawling camp spread over several acres.  The sun shone golden on autumn leaves that fell to the ground in the gentle breeze.  Pastoral.  Peaceful.  Until four bus-loads of 7th graders exploded onto the scene.  Luggage and bed rolls seemed to heave themselves from the buses while boys and girls clamored to claim their belongings, climbing over one another like ants on a hill.

On what seemed to be a roughly 25 mile trek to our cabin, Sydney pulled her bag over rocks and up curbs, trying to avoid being swallowed by the crowd.  Inside we took a vacant bunk bed at the end, offering a small measure of privacy for the bottom bunk. However, when I tried to coax Sydney into the top, she was not having it. “Of course,” I thought, climbing up rung by rung to unroll my sleeping bag and survey the room from my vantage point a foot below the ceiling.

Bunk beds lined both sides of our home-away-from-home.  The shower room contained a few perfunctory toilets and shower stalls with plastic curtains.  Drains dotted the concrete floor.  No blinds on the windows, no paper towels, no A/C or heat for that matter.  “Not the Ritz-Carlton,” I considered, “but, come on, what’d you expect, Lisa?”  No time to ruminate either—we had five minutes to unpack and we were moving again.

The ringing in my ears became constant.  After eating our sack lunches outdoors, dinner was the first meal in the mess hall.  Contained within walls, the collective din escalated to a frequency heard only by dogs, and a decibel level certain to cause hearing loss.  Words cannot do justice to the food.  We dined on chicken patties, tater tots and what was possibly green beans.  And lots of ketchup.  Afterward we gathered around a bonfire where the clamoring and jostling reached a fevered pitch that overwhelmed Sydney so much she begged to go back to the cabin and skip the upcoming movie. “Thank God!” I sighed, then, looked around. “Did I say that out loud?”

Sydney and I read on the lower bunk for a blessed few hours and when the girls returned it was a flurry of showers, pjs and bedtime gossip until 11:30 when the noise . . . finally . . .  stopped.  “Aww.  They’re so darned cute when they’re asleep,” I mused.

The next morning, I’m embarrassed to admit, I tried to find a way out. I didn’t know where I was—I had no address, no coordinates, not even the name of the camp—but I had cell service and I was desperate for a ride. I even had something set up, but then I saw Sydney at kitchen duty, doing her assigned job and I knew why I was there.  So, I downed a weak cup of coffee and, newly fortified, decided to stick it out; not ‘Mother-of-the-Year by a longshot, just a mom sucking it up for her kid.

Fading into the background, I donned my role as Sydney’s shadow.  My objective for her was normalcy; inclusion.  I’d be there when she needed help, I’d stepped back when she didn’t.  And since the rest of the kids kind of forgot about me, being the proverbial fly on the wall gave me a unique perspective, one I would have missed had I taken the chance to get out of dodge.

The kids participated in team-building exercises and educational lessons; recreational activities like fishing and hiking, and outdoor free time; playing basketball, volleyball and tetherball, running around or just hanging out.  The weather was beautiful.  The kids were beautiful.  I watched.

And what I saw was intriguing.  Not children anymore, yet not fully adolescent either, their identities were struggling to take shape.  There were leaders, loud and self-assured, or so they appeared; followers, shy and reserved, or maybe just thoughtful. There were socialites, thinkers and non-conformists. Outgoing kids, quiet kids, happy kids and lonely kids.  It was all there; a developmental microcosm, every personality type playing into dynamic interaction.

And where did Sydney fit in?  She was accepted as part of the group, and like other quiet kids, unnoticed by some and engaged by others. Some kids were especially kind and made an extra effort to reach out to her.  No one was mean; I saw no taunting or name-calling.  The anti-bullying campaigns have succeeded in dissuading overt cruelty, for which I’m grateful. But she was still vulnerable and my heart would break a little as I watched her follow the girls around, staying on the periphery and waiting for an opening, waiting to be invited in.  Sometimes it happened and sometimes it didn’t.  But, the insight I gained was invaluable: All kids need acceptance and Sydney is no different than anyone else; she just needs to be acknowledged.  She just wants to be seen.

Unflappable, she inspired me with her healthy self-esteem.  She was acutely aware of the times she was left out and she felt lonely.  That’s a normal response. What she didn’t feel was shame.  She didn’t draw the conclusion that something was wrong with her, rendering her unworthy. Rather, she remained ever-hopeful and resilient; open to every connection.

I hope she stays that way but it worries me that she might hear language perpetuating a degrading image of those with intellectual disabilities; words that are used, on occasion, with intentional malice, but more commonly, used without thought for the negative connotations they hold and the pain they inflict.  It’s this cultural trend I’d like to see shift.  And it begins with the kids.

Haley, our youngest daughter, has a penchant for the dramatic and frequently plays to an imaginary audience, acting out all the parts in her own vignettes. With an energy that is off the charts and narration that is non-stop, Steven and I have acquired the ability to tune her out, in the name of self-preservation.  Recently, however, she delivered a line that sliced through the buffer.  Steven, buried in his computer, heard Haley say, in her best valley girl accent, “What were you thinking?  I mean, she’s a RE-tard.”

Now, our girls have been exposed to a bit of cussing—I’m not saying by whom. They’ve even used it in the correct context when they were little:  Sydney, coming upon Dad’s muddy four-wheeler, caked with dirt, muck and filth, exclaimed, “What a f*@&ing mess!”  And Haley, after cleaning up her own big mess declared, “I got all my $#!t out of there.  I don’t have any more $#!t in there.”  But, the R-word?  Nuh-uh. No one in our house uses it. EVER. It’s considered fouler than any four-letter word.

After tending to his whiplash, Steven seized the teaching moment, and asked Haley what she thought the word meant.  Her response: “It means that you don’t know anything.  That you’re stupid or weird.”  He told her sternly, “It’s a mean word—a very bad word—and if I ever hear you say it again, especially around Sydney, you will be in big, big trouble.” With contrition Haley said, “I didn’t know it was a bad word about people with disabilities, Daddy. I just heard it at school.”

Words hold the power to include or exclude, to build up or tear down, to unite or divide. In 2010 Rosa’s law was passed, which replaced the words, “mentally retarded” with the words “intellectually disabled” in federal policy.  The law was named for a girl with Down syndrome whose young brother said, “What you call people is how you treat them.”  Out of the mouth of babes.

Going to science camp was a gift; a rare chance to witness our future leaders, teachers, politicians and parents and their potential for changing the world.  When I heard a classmate say, “Sydney, come sit with us!” patting the bunk beside her. “Your hair is so pretty today. Do you want some goldfish?” my heart soared.  There is much to be learned from young humans.

That last night, each cabin performed original skits; everyone had a part, no one was left out. Afterward the kids moved as one amoebic organism toward the Rec Hall where the benches had been moved to the perimeter.  Flashing, colored lights were strung and a DJ was laying down the latest mash-ups on a computer with turn-tables. To say the mood was electric would be a gross understatement.  The teachers and I stood as sentries on the benches around the room; keeping vigil, sure, but even more, celebrating the display of an exuberant zest for life that, if it could be captured, would solve the energy crisis forever.  Knowing glances and barely suppressed smiles passed between the grown-ups when, at the start of every new track, audible delight erupted from the crowd.  Hands waving, bodies pogo-sticking, they danced their middle-school hearts out.

At the height of the party, the dance floor opened up and a circle formed to showcase individual talents.  There was breakdancing, popping and locking, and a little Gangnam Style, too.  Then Sydney was coaxed into the center.  Thriving in the spotlight, she pulled out her very best moves, long hair swirling her head as she gyrated her body.  Consumed with passion, she became the music: she was the dance.  Everyone cheered her on, so, as any diva would, she drove her performance to a dramatic crescendo, finishing in full Chinese splits with both hands in the air.  And the Crowd . . .  Went . . .  Wild!

It was magic.  Labels evaporated and they were just kids that belonged together—far more alike than different. Suddenly, “It’ll be good for the kids,” took on a whole new meaning.  This was so good for the kids, all of them. And they didn’t have to make it happen, it just did; they connected with one another and, empowered, became more than the sum of their parts.

This is good for us adults, as well.  If we pay attention, our children are showing us that we are all in this together. They are showing us what is possible when we embrace community, enfolding all and excluding none. They are showing us they can change the world, one dance party at a time.

The next day, boarding the bus to go home, Sydney stopped toward the front, “Mom, can I ask you?  I just want to sit with my friends.”  I happily left her there and made my way to the back.  Hunkering down and leaning against the window, I took out my book—and my ear plugs—and prepared to enjoy the ride.

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Filed under Adolescence, Down syndrome, Growing Up, Memories, Motherhood, Parenting, R-Word, Special Needs

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  1. Pingback: Confessions Of A Reluctant Stage Mom | Soft In Hard Places

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