To watch us dance is to hear our heart speak ~ Hopi Tribal Saying
My daughter Sydney is turning 13. Thirteen. As in teen-ager. When she was born with Down syndrome, we couldn’t have known that watching this beautiful creature grow from infancy to adolescence would be astonishing, but considering that ten years ago we nearly lost her to pneumonia, it becomes positively miraculous. She would have remained forever a cherubic 2½ year old, arrested in toddlerhood, innocent and unchanged. It causes my chest to constrict painfully when I remember the weeks she spent in the Pediatric Intensive Care Unit, when I realize how close she came to dying. But, to our great relief, she didn’t. She stayed with us. And she’s no longer a baby. Through preschool and potty-training, through primary school and pre-pubescence, my long-legged, lanky daughter, emerged, poised on the cusp of puberty. Ready or not, world, here she comes.
The summer before my 7th grade year, Jive Talkin’ by the Bee Gees occupied the #1 spot on the Billboard 100 chart. I must have played my 45 vinyl record, dropping the scratchy needle into the groove, a thousand times.
J-j-j-j-j-j-jive talkin’, telling me lies.
Good lovin’ still gets in my eyes.
Nobody believes what you say.
It’s just your jive talkin’ that gets in the way.
To say I loved that song would be grossly understating my passion. I felt that song. I had to move to that song. When my Dad joined in, swinging me around and attempting the latest dance moves, I thought he was a dork, but I loved him for it.
Fast forward a few decades and musical genres to Sydney, in the summer before her 7th grade year, playing Selena Gomez on her iPad over and over and over.
I, I love you like a love song, baby;
I, I love you like a love song, baby;
I, I love you like a love song, baby;
And I keep hittin’ re-peat-peat-peat-peat-peat!
She likes her music loud and sings robustly at the top of her lungs. She whips her hair back and forth, she gyrates provocatively (much to her Dad’s chagrin), she works it. Grabbing the mop and using it as a microphone she dances around the kitchen. I sing along and groove to the beat, trying out a few of her moves myself. “Mom! You’re ‘barrassing me.” she says, shaking her head, but giving me a smile anyway.
Erikson’s theory on psychosocial development defines ages 13-19 as the stage of Identity vs. Confusion, asking the questions, “Who am I?” and “What can I be?” This is no different for my daughter. Because Sydney has been developmentally delayed—and will be cognitively disabled for the rest of her life—it would be easy to see her, and treat her, as a perpetual child. But to do so would dismiss the incredible metamorphosis that is her birthright; the age-old transformation from androgynous child to fully mature woman.
There is physical evidence that her body is budding, in all the normal ways. Hormones are also dictating changes in her behavior. Social by nature, Sydney has always been very flirtatious, but the infatuation with having a boyfriend, going on dates and (gasp) kissing has begun to border on obsession. She strokes her long hair, tilts her head, bats her eyes. And the child is moody. Without warning her cheerful demeanor turns as cantankerous as an old man. When called, she can’t be bothered to answer; if she’s not ignoring me, it’s ‘talk to the hand.’ Then just as quickly, my easy-going, happy girl resurfaces. At least until something has upset her which could be anything from a chicken nugget shortage to a harsh word from her sister. Once stoic, she now cries at least once a day.
Another clue is the attitude she’s sporting, complete with expressions of disdain and boredom, eye-rolling, sighing, defiance, slumped posture, etc. All recognizable from the adolescent period of our older two children, or what we refer to as the years from hell. She won’t get out of bed. She won’t clean her room. She won’t turn off the iPad. Or the TV. Or the stereo. Everything is such an effort (insert lethargic whine here).
She’s annoyed by her younger sister, emphasis on younger. In the car one day Haley sang loudly, ‘If you’re happy and you know it, clap your hands!’ Sydney, with a scowl on her face, folded her arms and said, “Not happy.” And during a recent discussion in which Haley referred to herself as a pre-teen, Sydney abruptly corrected her, “Haley, you’re not a pre-teen. I’m a pre-teen. You are a preschool-teen.”
Of course Sydney wants to hang out with kids her own age, but the reality is she is a mentally-challenged little girl in a body that’s begun to develop. Her behavior isn’t always congruent with that of a typical 13-year-old. I’ve anticipated the day she would know she was different, and when Haley began noticing other kids with DS saying, “That girl looks like Sydney,” and asking “Why does Sydney talk like that?”, I knew I needed to broach the subject soon.
Haley was four and Sydney, eight, when one morning at breakfast Haley asked, “Mom, what’s Down syndrome?” And there it was. I think I stopped breathing for a second. “Where did you hear that?” I asked. “Mr. Matt at Kid Korral said Sydney has it.” I didn’t see it coming. I wasn’t ready. But I reached for the right words and went with my gut. “It’s something Sydney was born with, like you have blue eyes and Mom has curly hair. She will have it for the rest of her life, but it’s not a disease and you can’t catch it.” Sydney was listening. I hoped if she could hear me telling Haley in a no-big-deal, Mom’s-just-answering-questions conversation, it would land softly and she could absorb it. I prayed in this way she would learn, if obliquely, that yes, there is a name for this and while an integral part of who she is, it does not define her. “It means that Sydney says some words differently and needs a little more time and maybe some extra help to do things. That’s it. She’s still your sister and still just like you in more ways than she is different.”
Maybe this was a blessing in disguise; I’m not sure when I would have told Sydney. How do I tell my daughter that every cell in her body has an extra chromosome—affecting her physically, mentally, and emotionally—and yet she is every bit herself, precious, unique, just as capable and strong, nonetheless? She needed to know this, especially now, as her tender ego is beginning to form and she starts asking “Who am I?” and “What can I be?”
In middle school, Sydney’s academics took her to a self-contained classroom, narrowing her contact with the mainstream student body. I lobbied to have Sydney sit at lunch with friends from elementary school. These are good, good kids who have always been kind to her, but it’s become apparent they’re developing at a faster pace; the natural result is she’s getting left behind. I don’t blame the kids; they’re fresh and beautiful, busy becoming teenaged versions of themselves.
I got a call from school that Sydney was acting up at lunch, messing with the other kids’ food and trying to get attention. Now, she knows good and well what’s appropriate and what’s not; we’ve talked about manners and rules and consequences. She gets that part. But asking her why she’s misbehaving gets us nowhere because she just doesn’t know. Her impulses frequently get the best of her and reprimands ensue. We’ve been here before and no doubt will be again, no biggie. But, this time after going through the rigmarole about good choices vs. bad choices, blah, blah, blah, she said in a small voice, “But Mom, somehow I’m a little different.” She wore a look of resignation so full of knowing that I wanted to wrap my arms around her and never let go.
Drawing her into a hug, I said, “Oh, honey, we’re all different!”
She started to cry then. “Like Sophie?” she said, referring to a friend from her therapy group.
“You’re talking about Down syndrome?” I asked.
She nodded again and laid her head on my chest saying she just wanted to be little again. Tears welled in my eyes, as I tried to breath, thinking, I can’t shield her from the truth. She is different and she’s smart enough to know it.
The 6th grade Spring Social took place in the cafetorium (this is a real word) on a weekday afternoon. This rite of passage was as beautiful to witness as it was painful; the array of young people, gangly and awkward, not fully in control of themselves, exuberantly announcing their presence to the world while attempting to hide their insecurities—not children, but not teenagers, either, created a developmental microcosm that was fascinating to observe. As soon as the beat was laid down, Sydney rocked the dance floor. My girl is no wallflower and she’s not waiting on anyone. I stood off to the side as clusters of kids bantered loudly, trolled for snacks, and moved in clumps, rushing from place to place with frenetic energy. And Sydney danced. Occasionally a group of girls would run over, join hands with her and whirl in circles, moving off as quickly as they came. No one was deliberately leaving her out, but she was alone. Dancing. Like nobody was watching. She had a blast—losing herself in the crowd, with them, even if she wasn’t with them. It was me whose heart was breaking.
The TV show, GLEE, features a teenaged character named Becky who happens to have Down syndrome. Sassy and confident, Becky asks a boy out; a very nice boy, a typically-developing boy, though he is wheelchair bound, what she calls ‘handi-capable.’ Artie genuinely enjoys her company on their date but while Becky believes she has a new boyfriend, he just wants to be friends. He’s given this advice: “Why don’t you treat her like a real person and tell her the truth. Becky just wants to be treated like everybody else.” He lets her down gently, honestly, and she asks, “Is it because I’m too intimidating?” “Yeah,” Artie says. She turns and walks down the hallway lined with lockers. As viewers, we’re privy to her thoughts, spoken in a voice like the Queen of England because “in my mind I can sound like whomever I want.” Holding her head high, putting one foot in front of the other, Becky thinks, “I didn’t ask him what I wanted to ask him. I didn’t ask him if the reason he didn’t want to be my boyfriend is because I have Downs. I didn’t ask him because I know the answer is yes. Some days it sucks being me. This is one of those days.”
Feeling rejected, alone, different, left out, and weird, isn’t exclusive to people with DS, or teenagers for that matter. The longing to belong reflects the universal need to be part of something greater than ourselves, and acceptance into the fold is the ultimate affirmation. When that collective recognition occurs, we feel seen, heard and valued, and instantly, we connect and tap into the well of the human condition. It is magical. I felt it the first time I sang in a choir with hundreds of voices. I’ve felt it teaching group fitness, listening to my closest friends and reading a news article about a mother in the Sudan. It resonates in my whole being when I gather with my family to mourn a death, celebrate a union or welcome a new life. The edges of criticism soften and blur; barriers fall away until all that is left is oneness; like a great and glorious puzzle, each unique piece fitting snugly in place to form the whole picture.
I ache with wanting that for Sydney, but then I see that she’s all right. She is self-affirming—even through the angst and turbulent vacillations of youth—and as such, she is continually plugged in, seeing the sacred in the ordinary in a way that I can only aspire to. Filled with love and acceptance, it radiates from her, emanating brilliantly and alighting on everyone around her. She doesn’t feel alone.
Still, it warms this Mommy’s heart to see her find her niche, her people, where she fits in. This June she’ll head to Southwest Missouri for a week at her favorite place on earth, Camp Barnabas, a summer camp dream-come-true for kids with special needs, where ‘different is normal and normal is different.’ This is her 5th time. She’ll meet new kids, but some of her best friends from over the years will be there, too, picking up where they left off, sharing good times canoeing, horseback riding, singing around a campfire. And dancing. There’ll be lots and lots of dancing.
Sydney’s going to be just fine.