“One of the first questions I ask parents who come to my office is, ‘Do you have a flopper or a runner?’ ” The audience laughed knowingly.
We were listening to a talk given by a doctor of behavioral medicine at the first National Down Syndrome Congress convention Max and I have attended. Lyra was only 10 months old at the time, but already we’d heard stories about floppers and runners.
Children with Down syndrome can, and frequently will, use their low muscle tone to transform themselves into immovable objects — “floppers.”
By the time she was 2 years old, if Lyra didn’t want to do something asked of her, she sometimes dropped to the floor and went completely limp.
Back then, it was easy to pick her up around the waist and cart her off like an oversized football. But last month at her 6-year physical, Lyra weighed 40 pounds. I now wait for Lyra the Temporary Statue to reanimate, ignoring her when possible.
Except in places like parking lots, flopping comes with few risks to a child’s health or well-being. Running, on the other hand, is almost always extremely dangerous and, therefore, deeply terrifying.
“Some children and youth with autism spectrum disorder (ASD) or intellectual disability (ID), have challenges understanding safety issues and communicating with others … a child might run off from home to play in the pond down the street — and be unable to respond to his name or say where he lives. This can happen quickly, even under constant supervision,” according to the Centers for Disease Control and Prevention’s website.
Running is not free-range parenting. Soon after Claude was 11 and Hugo was 8, they were allowed to ride their bikes far from our house, including downtown Akron. But they understood how the world works. The only problem they encountered was a stolen bike, which Hugo hadn’t secured. He saved for a new bike and never again forgot to take his lock.
I maintain a Facebook page, “Whoopsie Piggle,” devoted to information on Down syndrome and disability rights. As a resource for parents dealing with runners, in June I shared blogger Meriah Nichols’ updated post on solutions for this serious problem. Weeks later, we were those parents.
On the run
In mid-July, I sat on our front stoop with Leif and Lyra. We live on a busy street, but our house sits far back from the road. I went inside to refill my glass of water, gone all of 30 seconds, when I heard Leif screaming, “Lyra, no! Come back!”
I dashed to the door. Leif was running after Lyra, who was racing toward the sidewalk. I ran after them both, repeatedly yelling, “Lyra, stop!” which seemed only to increase her joy at running. Fortunately, she stayed on the sidewalk and I caught her just as she reached the light at the first intersection east of our home.
How a kid with low muscle tone can run so fast beats me but, again, it’s something families in the Down syndrome community know well. When Lyra doesn’t want to get examined in a doctor’s office, she fights like a pro. Staff at Akron Children’s Hospital called her the Incredible Hulk after a recent exam.
Also in July, Lyra first succeeded in opening the doors in our home. “Oh, no!” said Lyra’s occupational therapist when I told her. “I have parents ask me to teach their kids to open doors and I always refuse. I mean, sure, it’s great her hands are getting stronger, but you need to make sure she doesn’t escape.”
The next week, Max had a parental sixth-sense moment. “Where’s Lyra?” he asked. We searched the house, then the yard. Max got in our minivan and drove around the block while I ran to check the playground at the church across the street.
Max found Lyra on the street behind our house. People, some of whom we know, had her. Our backyard gate was open and we assume she walked over to our next-door neighbor’s yard, which extends to the street behind our houses. Lyra knows the way because it’s how we walk to the house of a friend of Leif’s.
Deputized by fear, we’ve all upped our diligence to protect Lyra. We all repeatedly make sure the gate is locked. The doors in the house are locked. And yet …
Less than a week after her dramatic disappearance, we were cooking dinner when the doorbell rang. “Probably somebody campaigning,” I said to Max as I walked to the door. I found Lyra on our stoop with two women. They had seen her trotting purposefully down West Exchange Street and went after her.
Luckily, one of the women knows me because her daughters went to Firestone with Claude and Hugo. However, she only connected that Lyra was also my child from reading my columns. Divine providence or great good luck. Either way, our debt to these women is immeasurable.
“How to keep your bolting child safe is one of the biggest concerns for many parents of kids with disabilities … and I think only another parent of a child with a disability really gets it,” writes Meriah Nichols. Our children “run away without conscience, with a complete disregard for safety or caution, almost an inability to stop.”
What can we do?
We have walked our fence and blocked the places where Lyra might squeeze through the wrought-iron bars.
Last spring, we dismantled our dangerously derelict play set, which Lyra loved. With my tax refund, I bought a new, bigger play set. However, because we’re considering selling our house to reduce expenses, we delayed construction. Now it’s (mostly) built and keeping Lyra engaged. If we move, I’ll buy another one.
And we are investing in an AngelSense GPS tracker for children. Nichols calls it the gold standard of solutions for dealing with runners.
What can you do?
If you see children who seem too young to be walking alone, or possibly disabled and alone, calmly approach them. If they refuse to engage but continue on, call 911. First responders should be, and often are, trained on how to respond to children with intellectual disabilities or ASD who have run.
After Lyra’s last (and most terrifying) running episode, the police came to our house and took down her information. They did this so if, God forbid, it ever happens again, the department knows who she is and where she lives.
“It takes a village to raise a child” is a well-known African saying. This summer, Max and I felt like it has taken our village to keep our daughter safe and whole. And for this it is impossible to fully express our gratitude.
This was first published in the Akron Beacon Journal on September 9, 2018.