Posted by: Hallie Levine | June 28, 2011

The Special Club

This past Saturday, Stepping Stones Museum, a local children’s museum, offered free admission for families whose kids have special needs. It’s one of our favorite activity spots, and given the fact that it was a rainy day, it seemed a reasonable way to spend a morning.

It cleared up enough for us to spend some time in the outdoor play area. I was sitting on a bench nursing Geoffrey when I caught the eye of a woman in her 60s who was tenderly holding an infant on her chest. Her face was nuzzled in the baby’s blonde fuzz and she had that rapturous look common to new grandmothers.

I smiled at her. “How old?” I asked.

It turns out the baby was two and a half months, not much older than Geoffrey. The woman lived nearby but her daughter was visiting with her two young children from out of town. She was friendly, but reserved. She didn’t seem much interested in keeping up a conversation, so after a few minutes I gave up and let her enjoy her new granddaughter in solitude.

I wasn’t alone for long; Jo Jo came ambling over to say hello. She does this new thing now where as soon as she sees me nursing the baby she makes a beeline for me and tries to climb onto my lap, as if she’s reclaiming her mommy just for herself.

“Hi there Jo Jo,” I said, trying to hug her without letting the baby get squashed in the process. I noticed the woman looking intently at her. That happens quite a bit with Jo Jo. Jamie and I think it’s usually due to someone trying to figure out whether or not she has Down Syndrome. She’s tall and long limbed, which sometimes throws people off, but it’s her eyes, slanted and almond shaped, that give her away.

“Does she keep her glasses on?” the woman asked.

 “Usually,” I said as I attempted to disentangle myself from my daughter, who had decided to stand on my lap and wrap her arms around my neck in what felt like a death grip. She had managed to dislodge Geoffrey, who was irately squawking.

“My other granddaughter is two and a half and also wears glasses, but we can’t get her to wear them,” she explained.

“Huh,” I said, trying desperately to get Geoffrey to latch back on while trying to navigate Jo Jo off of me and onto the bench. I noticed the woman was still staring at us, but now she was leaning forward, with an eager look on her face.

“We’re in the special club too,” she said coyly.

It took a moment for what she said to register, and even then I wasn’t quite sure. “Your granddaughter has special needs?”

“Not just special needs,” she said triumphantly.  She leaned forward and said, drawing out every syllable, “we’re also in the ex-tra chro-mo-some club.”

Apparently the club was getting more exclusive by the minute.

 “So she has Down Syndrome,” I said, wondering why she couldn’t just come right out and state that fact.

The woman nodded. “Yes.”

Then it was as if a geyser had burst. The woman couldn’t stop talking, but very little of what she said was actually about her granddaughter. Instead, she kept harping on this Special Club, a place you didn’t want to join at first but once you were in it you couldn’t believe you had never ever clamored to become a member.

I kept nodding, but I couldn’t relate to what she was saying. For Jamie and I, the Down Syndrome is just a small part of the bigger picture of who Jo Jo actually is. As the woman talked about how special her granddaughter was with her extra fabulous chromosome, I wondered how much of it she really meant and how much she was still trying to convince herself.

 “I’m so glad I found another mom who had a child with Down Syndrome here,” she said. “We came here this morning specifically because it was geared to children with special needs. I can’t wait for you to meet my daughter and granddaughter. They’re inside looking at the exhibits but as soon as they come out I’ll introduce you.”

Just then Jamie showed up half carrying/half dragging a screaming Teddy, who was clearly overdue for his nap. “I think it’s time to go,” he said.

The woman smiled warmly at him. “Your wife and I were just talking about the fact that we’re all in the same special club.”

My husband glanced at me, bewildered.

“Her granddaughter has Down Syndrome,” I explained.

“We’re all in the extra chromosome club,” the woman chirped.

My husband smiled politely at her but he looked over at me and rolled his eyes.

By now Teddy was writhing on the floor screeching manically, and we were getting the “What’s-wrong-with-your-son” look from other parents, so it was pretty clear we really couldn’t stick around. But the woman wouldn’t take no for an answer. The next thing we knew she had disappeared inside searching for her daughter.

She came back a few minutes later. “They’re in the energy lab and my granddaughter doesn’t want to leave those water tables,” she said apologetically. “Why don’t you stop by and say hello to them on your way out?”

The energy lab was pure chaos—there were overtired toddlers everywhere splashing wildly around at the water tables, drenched and screaming, while their parents, who looked just as disheveled and exhausted, tried to console them. I scanned the room searching for a two year old girl with Down Syndrome, but didn’t see anyone.

I was about to leave when I saw her, standing by a water table at the back of the room. She had wispy blonde hair and enormous green eyes and was wearing an oversized bright blue smock. She was laughing and pushing around the colored balls that bounced in the water with a large stick. A woman with the exact same shade of blonde hair stood a few feet behind her, watching and smiling.

I walked up to her. “Are you L?” I asked, calling her by her name.

She looked at me blankly. “Yes,” she said.

 “Your mom suggested I stop by,” I said. “Our daughter, Johanna, is three and also has Down Syndrome.” I gestured to Jo Jo, who had followed me into the room with Teddy.

“Oh hello, so great to meet you,” the woman said, in a voice that clearly suggested it was not. She didn’t even turn to acknowledge Jo Jo.

“It’s wonderful that you came,” I said to her.

She shrugged. “Well, my mother told me about it and it was free admission, so why not, right?”
There was an uncomfortable silence as we stood watching our children. Teddy, entranced, had wandered over to the water and in typical Teddy fashion had decided to yank the stick out of her daughter’s hand. “Mine,” he said possessively.

“Teddy, don’t,” I started to say but her mother had already grabbed her and was hustling her to a water table at the other end of the room. “Thanks for introducing yourself!” she hollered as she moved away, clearly trying to get as much space between us as possible.

“Wow,” Jamie said when we were in the car driving home. “She really did not want to talk to us.”

“Maybe she’s just in a foul mood because she’s so sleep deprived,” I said. It’s the unspoken code of motherhood that you’re supposed to defend other mothers from criticizing husbands, especially when there’s a newborn involved. “Her baby isn’t even three months old.”

“Maybe she didn’t want anything to do with us because she’s in denial that her daughter has Down Syndrome,” he said.

I had to admit, I had wondered the same thing. But I also wondered if maybe her mother was simply driving her nuts. Perhaps the woman was just sick of hearing about belonging to that special club. Maybe, instead of being dragged to a disability related event, she’d wanted to spend her Saturday morning at the beach reading a trashy book in the shade while her daughter did typical toddler things like throw sand around and suck on popsicles.

Maybe, for just one morning, she wanted to enjoy her little girl for who she was and forget that she had Down Syndrome.

 “What do you say when you meet other people who have children with Down Syndrome?” I asked my parents when we visited them this weekend.

“I introduce myself and tell them I have a beautiful three year old granddaughter,” my mother said proudly. “I told you about that nice young man I met in Whole Foods a few months ago.”

I vaguely remembered. My mom had been in the organic produce section when she’d spotted a 13 year old teenage boy with Down Syndrome. She had been so excited she’d dogged him around the store hollering “Yoo Hoo” until he and his mother finally turned around and realized that the elderly woman in the blue polo shirt and khaki pants was chasing them. They bonded in the frozen food section where, among other things, they learned that both the young man and Johanna were huge fans of Dr. Praeger’s fishies.

“But what do you say?” I asked again, pressing forward suspiciously. “Do you come right out and say she has Down Syndrome?”

“Yes,” my father said. “Of course we do. Why wouldn’t we?”

I told them about the grandmother at Stepping Stones and her special club. “Just do me a favor,” I said. “Please don’t wander around telling complete strangers Jo Jo is special with a capital S.”

“Of course she’s special,” my father said. “But she’s special because she’s Jo Jo, our granddaughter, not because she has Down Syndrome.”

I had kind of figured that was what he’d say. I’m lucky that my parents view Jo Jo the same way I do: not as an extra chromosome but as a three year old girl who loves playing on her toy piano and singing Old MacDonald and making up elaborate dance moves with a pair of her Nana’s silk scarves.

It was exactly what I needed to hear.

 

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Responses

  1. JoJo’s other Bubby sees her as a wonderful teacher. She has taught our family to expand our visions of what is normal and wonderful even when it is different. Johanna is so smart in her own way and is much loved by all who are lucky enough to get to know her.
    Bubby Sylvia


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