Part I: A Storytelling Family
Chapter 1: Crayon Wings
My daughter and I were sprawled flat on the ground while stiletto heels stepped carefully around us. “I don’t know what to do,” I whispered to my husband, Zac.
These strangers walking by likely saw nothing more than an obstinate child having a temper tantrum while her ill-equipped parents tried to fix the situation. They probably assumed this seven-year-old- child, dressed in a Halloween costume in the middle of July, with a rainbow wig, and unicorn horn just didn’t get the doll she wanted or the dessert she craved.
They would have seen her father, wiping the sweat away beneath his hat, trying to distance her brothers to avoid escalating the situation. They would have observed her mother sprawled on the ground, unbuttoning her coat that no longer fit, as it happens with two pregnancies and three children. In the center of it all, they would have noticed a child, writhing on the floor, screaming, with no intention of moving.
But this was not a standard temper tantrum. Zac and I were watching our daughter have an episode – one of her epic meltdowns that had become typical parts of our days. Since her birth, we had learned strategies to cope with these situations. We gained this new set of skills when we added a new term to our vocabulary. Cri Du Chat. In French, it means “Cry of the Cat.” In medical school, it means a genetic disorder caused by a chromosomal deletion. In the doctor’s office, it means tests and therapies. On the linoleum floor of this mall, it means our daughter. Our Jordan.
We used to just scoop her up and carry her out of the situation. That’s how we handled the dish-breaking moment at the Odyssey diner, the thrashing in the turtle pond at the Norwalk Aquarium, and the destruction of the gift shop at the Bronx Zoo. As her parents, we learned the signs of an impending episode like an unspoken dance. Forget the infamous swing move we used to bust out at weddings, the more intricate “I’ll pay the bill while you basket-carry her away” tactic was more of a head-turner. We always ignored the stares from the other children or the purposeful avoidance of the other parents. Our goal was to simply to make her safe and then begin to calm her. It is what you do as special needs parents. You learn.
Now Jordan was over sixty pounds, the car was just too far away, and scooping her up simply didn’t work.
There was no way for strangers to know that this little colorful, contrary, curly-haired mush on the floor was unraveling because her body physically couldn’t take anymore. She was done. Despite achieving milestones never deemed possible, on this particular day her legs were too lethargic to leave, and her tongue was too tired to talk. The doctors call it hypotonia, low muscle tone in her body. The occupational therapist calls it sensory dysregulation, too many sensations to process at one time. We call it exhausted.
Just because you are trained to handle these types of situations, doesn’t mean you ever get used to them.
I ignored the creeping guilt which told me I should have known this trip was too much and we should have stayed home. I pushed down the jealousy I felt towards the other patrons enjoying their stroll through the tech store on a beautiful Sunday afternoon. I swallowed the resentment I had towards the mother and daughter trying on sneakers in the store next to us. I sat on the ground with her. Step around us, kind patrons, we had some carpet angels to make while we sort out some transitions here. Zac and I talked out the plan while her brothers tried to fly down the escalator with their capes.
“When we get home,” Zac encouraged her, “we can take a nice bath.” Three minutes in water always restored her innately pleasant demeanor.
My sons, Austin and Oliver, had now stolen two items from the nearby Gap. We had hit the fifteen-minute mark.
A child’s breakdown was one of the prerequisite badges of parenthood, and no matter how many times they opened the door while you used the bathroom, threw goldfish crumbs at you from the backseat or smashed toys because they were “too red,” you knew it would eventually end. It had to. Although, when you are in it, time seemed to stop.
“I live here now,” Jordan whispered in impish delight.
I mean it wasn’t a bad choice of residency. We were in one of Westchester’s fanciest malls. We could borrow some blankets and eat Cinnabon’s for dinner. I exhaled. Her typically adorable nature always sneaks in, even when she is depleted. In the grand scheme, we were fine, just out of strategies. We assessed the situation. There wasn’t much urgency beyond our own frustration. This isn’t how we planned to spend the day. We would eventually get her to our minivan parked two floors away and returned to her weighted blanket at home. I just had to fight my inner Hulk from making a guest appearance and my husband had to return stolen items to the Gap.
“Excuse us, we just need a moment,” I exhaled from the ground to the people above.
“Leah, take the boys to the car and I’ll carry her out,” Zac sighs. “Boys, don’t color on the benches, please.”
Austin and Oliver—correction: Superman Austin and Superman Oliver—were holding some broken crayons they unearthed from my coat pocket. After rummaging through an assortment of matchbox cars, a wind-up toy, two lollypop sticks, and one bobby pin, they chose their weapon.
With their little capes flying behind them, they swooped in: “We will help you, Jordie!”
“Boys, Jordan needs a minute. Go to the car with Mommy.” The last thing we needed were the three-year-old twin tornadoes getting in her wake.
“Jordie. You don’t have a cape. You need wings.” Their little voices blended together as I reached for them. “These will help you,” they cheered as they ran towards her with their new idea.
The last three years have acquainted the boys with more than enough of these episodes, although we tried to keep them clear of the situation. They had just been a bit too young to explain it. This time, my husband and I stood back to watch the superheroes take their crayons to simultaneously draw wings all over Jordan’s body, on the sleeves of her jacket, on each of her shoes, and one final one on her back.
“Okay. Now you can fly,” they giggled in unison as only twins could.
She stood up and walked directly into the elevator.
Oliver placed the crayon in my pocket and the boys confidently marched behind her.
“Mommy hold these for Jordie – for next time.”
We are just an ordinary family with some extraordinary circumstances. Our home is not defined by our daughter’s diagnosis, our catalog of doctor’s names, or the scenes we make in public spaces. It is defined by the chaotic joyfulness that happens with five bustling humans. The children in our family are practicing kindness, empathy, and perpetual toilet training. Our neurotypical boys have a sister who isn’t. Yet, we are not burdened. When we go to the park, even though they are running at different speeds, the children play tag together. Like all parents, we are learning how to handle the unexpected journey that comes with each milestone of raising children. We just redefined our normal.
Bio: Leah is a high school English and Theater teacher and mother of three children. She captures the stories of her charismatic daughter with Cri Du Chat and the adventures of her energetic twins in her blog, www.lovingyoubig.com. She believes life’s odysseys can best be handled with kindness, a sense of humor, and the perfect pair of sweatpants.
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If you’re a parent of a child with special needs, here are some resources you might find helpful:
- Cerebral Palsy Family Network – A compassionate community that provides resources for loved ones with cerebral palsy
- Autisable – A place for the Autism community to share their experiences without fear of judgmement.
- Mightier – A program out of Harvard Medical and Boston Children’s that helps kids learn to emotionally self-regulate.