“I just have to tell you something. I’m really liking boys without shirts on.” Sydney confided this secret to her long-time babysitter as they walked downtown close to campus where the streets buzz with college students and it’s not uncommon to see packs of male runners jogging past, sans shirts. When one particular athlete winked in response to Sydney’s friendly wave, she blew kisses, with both hands. ‘Right back atcha.’ Yeah, she’s cute. And she knows it.
She was recently tapped to shoot a public awareness announcement promoting ‘different abilities, not disabilities.’ Her co-star, a good-looking 300 lb. offensive lineman for the Mizzou Tigers, sat on the arm of a chair, chatting her up and making her feel comfortable. Sydney stood close, sporting an MU jersey over trendy jean shorts from Justice that emphasized her long legs. Her hair was gathered in low pigtails that hung down her back and black nail polish accented her fingers and toes. She wore her signature purple glasses and flashed a toothy grin as she flirted shamelessly.
Off to the side, I tried contributing to the conversation, but was met with her outstretched hand, “Mom! You’re embarrassing me.”
It’s been at least 10 years since my existence embarrassed one of my kids, but the memory came back instantly. “Are we already at that point,” I thought? Under the lights, with the camera rolling and the teleprompter visible, but unnecessary since she had her lines stone cold, she looked petite next to this brawny, teddy bear of a football player, but she did not look childish. No, she was all teenager. Like it or not, my little girl was morphing into an authentic adolescent.
It’s evident in other ways. A former tomboy where her wardrobe was concerned, Sydney has a sudden interest in her appearance. She preens and primps. She wears lip gloss. She creates interesting ensembles; a lime green and yellow tulle skirt, a purple tee featuring Justin Beiber’s face, a red headband worn around her forehead, hair mushrooming out the top, ala John McEnroe, neon orange socks in hot pink ballet flats, and a white fur jacket to top it all off. She walks the hallway like a cat walk, swinging her hand, then stops to strike a pose: one hand on her hip and a look on her face that says, ‘I am all that and a bag of chips.’
“I’m ready for my date,” she announces. “How do I look, Mom?”
“Wow! Dad, check out Sydney’s outfit!” I reply, punting to my husband.
He looks up from his phone and startles a little as he takes her in. “Whoa!” Recovering he adds, “You look awesome!”
“Thanks, Dad,” she beams, tucking her chin to her shoulder in a demure shrug.
She’s in love with being in love and wants a boyfriend more than anything else. She conjures imaginary love interests and describes elaborate dates, drawing on scenes from Disney Channel’s Austin & Ally and Good Luck Charlie. She even makes up ex-boyfriends.
But she’s not completely living in a fantasy. There are real boys in her world. Boys, for example, at Camp Barnabas, where kids with special needs go for the same summer camp experience as typical kids get. According to her counselor this year, Sydney had a date for the big dance and spent the whole evening with him. A summer fling. Exciting, short-lived but always-remembered. What could be more normal?
Then there are the boys she’s gone to school with since elementary school; those who have been some of her best friends. She sees them at school, on the bus, at her activities. She saw them at what we used to call play dates, but should really be called supervised hanging out now. Fueled by hormones and influenced by cultural norms, they’re starting to see each other differently, relating as the opposite sex, even if they don’t exactly know what that means.
One such sweet boy came with us to the pool. We walked the perimeter looking for an open spot and as I stopped to say hello to some friends, he and Sydney went on ahead. Moments later, as I scanned the crowd to find them, mixed emotions of shock, tenderness, concern and finally realization cycled through me. His arm was placed gently and protectively around her back and she was letting him steer her as they walked side by side toward their destination. Irrefutable proof that this isn’t all just in her head, it’s really happening.
Attuned to the energy between them, I started noticing other things. Like when I asked if they wanted to stay or go. Touching Sydney on the arm, he gallantly said, “You pick,” and she immediately blushed and became tongue-tied. Or like in the car when he grabbed her flowered sun hat and put it on his head. “I’m a girl,” he said in a high pitched voice and Sydney burst out laughing. He mugged some more, squealed and made feminine hand gestures. Sydney exaggerated her laughing, provoking him to throw his beach towel at her. She threw it back and hit him in the face. More laughing. More throwing. A stereotypical teenage ritual: delightful to witness, a little scary to contemplate.
In two weeks she’ll turn 14, and as with any girl her age, biochemistry rules her moods and behavior. The sequence in hormonal shifts is the same, but while her body progresses forward, there’s a lag behind in her social maturity, her judgment, and self-control. Traditionally society viewed people with intellectual disabilities as eternally childlike, devoid of sexual feelings. This is simply untrue. Those with special needs have the same human needs for intimacy as everyone else. She’s alive with passion. She feels. She responds. And that is precisely what worries me.
Parenting any teenager through the perils of their own developing sexuality is challenging, and Steven and I have already navigated it twice. But how is it done when that teen has Down syndrome? The best we can do is approach this as another stage in her life path. Where she needed more time and extra guidance to walk and to talk, so will she need patience and supervision to learn about love and about herself, in all her complexity. I have no doubt she is capable. Sydney is bright and sensitive to others; she lives through her heart. To presume she can’t handle intimacy is to thwart her opportunities for experiencing the full spectrum of human relationships. Our job is to keep her safe while teaching her—without shame—what is appropriate, and at the same time, give her the confidence she needs to pursue her heart’s desire.
A poignant documentary, Monica and David tells the love story of a man and woman, both with Down syndrome, who, through the support of their families, get married and embark on a life together. Their tale is a classic story as beautiful as any of two people in love, but soon the realities of living with intellectual abilities must be balanced with their commitment to each other. The film explores the fine line between independence and their need for assistance. Monica and David’s love for each other make this an inspirational story of courage and perseverance, for anyone, but especially for people with DS and their families.
On her wedding day, Monica rides to the ceremony in a limo, beautifully dressed in a white lace gown. She looks into the camera and says, “It’s all about him, and all about me. This is my day. It’s my life, to be with my husband forever.”
I think, why can’t Sydney hold hands and fall in love and share a kiss on the front porch at the end of a date? Why couldn’t she find a loving partner and get married? Like any of my children, I want her to be happy and fulfilled. To dream big. To know that anything is possible. That’s why it’s crucial we guide her safely through her adolescence and into young adulthood where she can realize her potential.
Lord knows, we’ve got our work cut out for us. Today, we ordered smoothies at the gym. The cashier was a dreamy young man in his early 20’s who was also kind and helpful. He smiled and talked to Sydney while he made the smoothies, then wished us a good day as we left. Walking away, Sydney shook out her long hair like a Breck girl and tossed a wave over her shoulder. “Bye-Bye!” she sang. Then, turning back to me she leaned in close and whispered, “Mom, I have a crush on him.”