When My Daughter With Down Syndrome Found a Forever Friend
Jo Jo and Lily are like any other BFFs—with one exceptional difference that actually makes no difference at all.
I will always remember my first day of kindergarten. I wore a red jumper embossed with three yellow flowers, and as my father and I approached the school, we met another little girl with her dad. She was wearing a white ruffled dress with red polka dots, and as our parents talked, we stole glances and giggled. This little girl was clearly someone special, and I wanted more than anything to be her friend. Her name was Melanie, and we were inseparable for the next three years. We "camped" in pink princess tents, drowned our Sea Wees mermaid dolls in bubble baths, and held tea parties with Barbies dressed in ridiculous outfits. When I was 8, my family moved away, and we lost touch. Yet 25 years later, when I gave birth to a little girl, Johanna, with Down syndrome, I immediately thought of Melanie.
As doctors drifted in and out of the delivery room, offering grim news, I had a sudden, vivid memory of me and Melanie running through the sprinklers, holding hands and squealing. At that moment, I realized that my daughter might never have what so many other little girls take for granted: a best friend. Over the next few years, as Jo Jo grew and I met more families like ours, I became more optimistic about her future. Today, most kids with Down syndrome master reading and writing, and some go on to college and lead independent lives. But when talk turns to friendship, parents are often much less sanguine.
I heard tearful stories of children not being invited to birthday parties, being snubbed at school events, and never, ever, getting asked on a playdate.
Undaunted, I threw myself into playgroups, and at first the differences seemed minimal. But as Jo Jo's peers grew older and went off to preschool and learned the alphabet, the chasm widened. While classmates adored her, jockeying to sit next to her at lunch or hold her hand during music class, they treated her more like a pet or mascot. I could demand that her school meet certain educational goals, but there was no way to guarantee Jo Jo would ever have a true friend. And then, one day, that friend appeared.
We'd just moved to a new school district, and I'd signed on as room mom so I could strike up friendships with other parents, a move I hoped would help facilitate playdates. One sunny September day, I showed up in the classroom to volunteer for a project. "Excuse me," a little voice said, tugging at my arm as soon as I walked in. "Are you Jo Jo's mom?" I looked down to see a girl in a pink tulle skirt and striped stockings, with a mass of brown hair and enormous brown eyes. "Hi," I said. "Yes, that's me." The girl stood looking at me expectantly. "Can you please ask Jo Jo to talk to me?" she said. I looked at her, unsure how to respond. Jo Jo was still not very verbal. It could be that she hadn't understood what the little girl had said, or she simply might have been feeling overwhelmed. "I think maybe Jo Jo wants to get more comfortable around you," I said. "She uses sign language too. Maybe we can teach you some signs, so you can also talk to Jo Jo that way."
The girl looked relieved. "I thought she wasn't talking to me because she didn't like me," she said. "I really want Jo Jo to like me. I want her to be my friend." I watched as Lily swished off. Every few minutes she'd bounce up from her art project to check in on Jo Jo and her aide. Each visit brought a new question for me: What was Jo Jo's favorite food? (Pizza.) What did Jo Jo like to do? (Dance.) What time did Jo Jo go to bed each night? (7:30.) For the most part, Jo Jo seemed ambivalent about her new friend. Sometimes she'd raise her head and say hello. Sometimes she'd just ignore her. One time she even rolled her eyes at her aide. Eventually, the teacher would gently admonish Lily and tell her to sit down, but a few minutes later, she'd pop right back up again like a Jack-in-the-Box. I had to admire the girl. She was persistent. "Jo Jo's mom, can you e-mail my mom to set up a playdate?" she asked. "Of course," I agreed, but it turns out I didn't have to. We saw Lily again that weekend at a birthday party.
It was a raucous affair at a large, indoor inflatable fun zone. Lily was there, front and center, flying down a bright pink slide. She spied us and shrieked, "Jo Jo!" Suddenly, Jo Jo was surrounded by a gaggle of little girls from her class. Lily linked arms with her as the group headed toward a huge dodgeball-themed bounce house. I started after them, sure Jo Jo would never go in. Indeed, she paused at the entrance, hesitant. Lily kept tugging her arm, eager; Jo Jo kept shaking her head. Then, completely unfazed, Lily picked Jo Jo up and carried her in.
Visions of my daughter disintegrating into a total sensory meltdown flooded my mind. I raced over, only to see Jo Jo and Lily bouncing in perfect symmetry, holding hands and laughing. After a moment, Jo Jo turned and gave me the ultimate first-grade-girl dress-down stare. Clearly, I wasn't needed. That moment sealed it. By the end of the night, the girls were on their way to becoming best friends. And a year and a half later, their friendship is nothing if not typical. They get their nails done together and dress up in tutus and watch movies. They can spend hours brushing each other's hair, or playing Barbies or bingo. (They have down a whole bingo routine: Lily calls out the letters and numbers, and Jo Jo places them—not always in the appropriate places, but Lily doesn't mind.) When it came time for second grade, the school made sure the two weren't just in the same class but seated next to each other, well aware of how much of a motivator Lily is for Jo Jo.
Sure enough, though, the teacher ended up having to separate them, because they wouldn't stop chattering and playing during class. This past fall, they had another rite of passage: their first sleepover. That night, as I found myself pounding up the stairs countless times—"Stop talking!" "Turn that light off!" "Get back into bed, and take the tutu off the dog!"—I realized, with shock, that I sounded exactly like my mother more than three decades ago, telling me and Melanie to go to sleep. I couldn't help but smile and let them be. Morning would come soon enough.