Parenting a special needs child can be challenging, with its own joys and triumphs. It can also be lonely. Unfortunately, parents of special needs children often find that their own friends, colleagues, and acquaintances can lack empathy or basic kindness in all sorts of situations. In this guest post, Alexis Calabrese writes about how she learned a “new script” for how to find her own network of support.
By Alexis Calabrese
It’s airless in the gym which is odd because it’s a huge space, high ceilings and glossy wood floors recently shined to glow like a mirror. A door opens and sunlight streams in along with a faint breeze and the smell of fresh cut grass.
“Thought you could use a refill.” Karen smiles as she hands me a large plastic cup, dripping wet and brimming with iced coffee. I slug down a third before coming up for air.
“Thank you. I mean, seriously, this is saving my life right now.”
She nods and takes a sip off her own cup. Within minutes the room fills with moms and a random dad or two. Loud, buzzed on caffeine, shorts and sneakers mixed with yoga pants and flip flops. It’s Tuesday at 10:05 a.m. and we move like a swarm around tables and clipboards. I yell out some orders, hand out a floor layout and the swarm parts.
“Hey VP!” It’s Michelle, my neighbor. “Are we still going with the green bunting or did we decide gold streamers?”
“Gold!” I yell back, checking my list. Sweat trickles down my back, and my t-shirt goes all damp and clingy. We work down the hour, tossing around memories as we arrange chairs, memories of the past six years, pushing our kids into and now out of grammar school. I see the President of the PTA make her way through the crowd.
“Go! Get out of here. I’ve got this.” Kimberly’s toned yoga arm waves me off and I shout over my shoulder that I’ll see her tomorrow for our final event, the 4th grade end of year celebration and the last day of school. She high-fives me, holds my hand for a beat and mouths the words thank you.
The hallway is cool and soft compared to the loud heat of the gym. I shake my hair out of a pony tail and catch a glimpse of a class coming out of the music room. It’s my son Owen’s class and I wait to watch him pass. He’s in deep conversation with Jackson, one of his best friends. They’re talking about a video game, I can tell by the hand motions. He bends to scratch his leg, and I see that he’s adjusting his leg brace, a stiff plastic orthotic that runs just up to his knee. I tamp down the impulse to help him and dig at my cuticles instead. He quickly tightens the Velcro strap and keeps moving with the line of kids, his gait awkward but steady. No one stares. It wasn’t always this way. He’s worked hard to become one of them. He explains his diagnosis with patience, holding up his wrist brace and ankle-foot orthotic as props in the story.
“Babies can have strokes you know,” he’ll say defiantly. “I know because I had a stroke when I was a baby. And now I have a disability called hemiplegia.”
It’s a prepared script we’ve worked on together so that he isn’t stumped every time someone asks him questions. Hemiplegia is easier to say than cerebral palsy.
Owen disappears down the hall and I make my way out of the building toward an afternoon of endless conference calls and a prickly meeting with my boss. I should be prepping for the meeting but all I can think about is Owen’s smile, the comfortable back and forth with Jackson, the baseball hat worn backwards. I breathe in the sweet smell of lilac in the June air and wave to the landscapers trimming back bushes, yet another committee at work.
Later that day, I’m in the kitchen, high heels kicked into the corner, when I get the call. It’s Karen. She’s in a rush but blurts out an invite. She’s hosting an “end of year” party with a few other moms tomorrow. It will be held at a local pool club, the one on the far side of town. Boys only but moms can stay if they want. The cost is five bucks for pizza and a juice. I swallow hard, holding back my excitement as best I can. I tell Karen how thrilled I am to get the call, how thankful and sweet they are to think of him.
“Of course!” She responds. “We were just talking and I said, ‘Hey, let’s include Owen!’”
“Well, the Evite went out over a month ago so we weren’t sure if you had other plans.”
“We would have invited him sooner but well you know, this time of year is so crazy and…”
I let her sit in the silence of that uncomfortable moment.
“I’ll have to get back to you,” I finally say. “It’s a little last minute.”
“OK,” she says. “I think we’ve got like 50 boys coming so we hired extra lifeguards. I hope the weather holds out, I think it will…”
She continues to talk, nervously and too fast, but it doesn’t matter. I stop listening.
50 boys. There are 103 kids in Owen’s class. I know because that number is imprinted into my brain from every single PTA activity I’d been planning for the past months.
If it wasn’t all the boys in the grade, then it was close. Too close.
I call my husband.
“Let O make the decision,” he says calmly. “If he wants to go, we should let him.”
“I’ve worked with these people every day for months, planning a million different events for their kids, for our kids and there’s no way, no way they forgot about him. They just didn’t invite him, they left him out on purpose!”
“Just because you have coffee with them and joke about laundry doesn’t mean they’re not assholes.”
He’s right, of course. But it’s more than that.
These are my friends. For years I’ve walked next to them down the wooded path to school, listened to stories about family, carpooled and raised a glass or two during a mom’s night out. Our boys hung out in different circles. Sure, our struggles were different, but we were all in it together, weren’t we?
After dinner, we tell Owen about the party. He tells us, while slurping up the last of an ice cream cone, that he has another invite.
“Jackson asked me to come to his house for a swim party,” he says. “His mom is gonna text you.”
And sure enough, there’s the text from Jackson’s mom lighting up my phone. It should have made me feel better knowing there was at least one other kid that hadn’t been invited to the big party. But it didn’t. Jackson has Down Syndrome and was one of the four boys in Owen’s inclusion program who, I found out later, didn’t make the cut.
I wish I could say I circled back to Karen and the other moms to ask them about their decision, to try to understand why they chose to leave these boys, my boy, out. But I already knew the answer.
I’d been in the trenches for so long, consumed with how much my son had overcome, I was blinded by how far he’d grown apart from his typical peers. His world wasn’t made up of lacrosse practices and STEM camps but EEG tests for a newly diagnosed seizure disorder and road trips to see yet another orthopedic specialist.
If I thought about it, I couldn’t remember the last time I shared any of the details of Owen’s medical issues with these moms, these women I called friends. A space had settled between us and I had a hand in creating that gap, ignoring their lack of interest and concern by glossing over the difficulties of our day to day.
I watched as the gap grew, as the calls for playdates dwindled and the kids who once teetered with Owen on training wheels, now veered around corners on muddied bikes, the sound of laughter trailing behind them. I had lost sight of those connections, or perhaps I just shut my eyes. Either way, whatever we had back in those early days, was long gone.
Now, I don’t give my time to the PTA but instead help out with the SEPAG, the district’s parent group for kids with disabilities. I listen to other parents whose kids struggle to make friends, to stay socially afloat and learn from them. We attend workshops and team up with advocates to help improve the social ties between kids with disabilities and those considered typical. I try not to let the past haunt me. But I do want it to guide me, to help me find my voice, so that when the next situation comes along, I’ll have my own script ready to go.
Alexis is a native New Yorker now living in New Jersey where she works as a Creative Director/Copywriter. Finding the time to write is her biggest challenge, so she has reluctantly become a morning person and one of those ridiculous people who tap out stories on a phone. She believes the right concealer is everything, can spend hours lost in a Twitter hole and believes in big magic–the bigger the better.