September 2018 – Whoopsie Piggle

“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.

Extra precautions

“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.

“Did you hear they’re making a TV show of Donald Duck Adventures? You know, the one we had a subscription to?” asked Hugo.

There was no subscription to Donald Duck Adventures. In 2003, I called and told the publisher I would pay for 12 issues up front if they mailed them to us when published.

My eldest son, Claude, did not read until the third grade, the year he was diagnosed with dyslexia. Though clearly intelligent, he had developed low academic self-esteem. The definition of a learning disability is when a person’s academic performance is notably lower than their IQ would indicate. Like the right combination to a vault of riches, once we had an accurate diagnosis, effective remediation could begin.My children live in a home with few screens and endless reading material. Only last year did I break down and get DirecTV after Max bought our only television, located in the finished basement.

I forbid video games in my home. Sure, my big boys played video games at their friends’ homes. My rule is not “no gaming ever,” though I counseled them to avoid violent games (they didn’t).

Instead of passively spending their days in front of screens, my children play and fill their time with books, newspapers and magazines.

At library sales, I buy children’s books like penny candy, most in new condition. Going on a road trip? Head to the library to borrow audiobooks everyone will enjoy. Some of our favorite audiobook authors are Cornelia Funke, Eva Ibbotson, Roald Dahl, Sid Fleischman and, of course, J.K. Rowling. As a family, we named our only girl Lyra after the main character in The Golden Compass (skip the movie, get the audiobook).

We subscribe to (and read) the Akron Beacon Journal, the Plain Dealer, the Sunday New York Times and the West Side Leader. When Max and I began dating I was shocked he did not have a newspaper subscription. “How do you read the comics?” I asked, a question he found odd from a 40-something woman.

Each night before dinner, someone clears the newspapers off the table before setting it. Nearby on the floor I keep three baskets: one for local papers, one for magazines and one for the New York Times. Every few weeks, I cull through them, finding stories I missed or that might interest someone else in the family. I set those pieces aside and recycle the rest.

In this era of fake news, newspaper subscriptions are more important than ever. Most fake news is generated on the internet where anyone can post anything, whereas legitimate newspapers rigorously fact-check what they put in print (see Doug Livingston’s piece from January at http://bit.ly/2uvigYD). If they get it wrong, corrections are published and if articles are found to be intentionally misleading, those involved usually lose their jobs.

We also subscribe to more magazines than we can all read. However, each magazine is read, if only in part, by at least one of us. Jules, our budding biologist, reads National Geographic, Audubon, several birding magazines and, until recently, Automobile. I receive The Sun and Creative Nonfiction. Max and Jules just switched from Cook’s Illustrated to Milk Street, a new cooking magazine. And we all read the New Yorker, Smithsonian, the Atlantic, Time, Down Syndrome World and This Old House.

Our fourth son, Leif, is now 7 and I see again how this works. He has organized dozens of dinosaur stickers on the four walls of his bedroom by the geological period in which they lived. A new book on dinosaurs guarantees a delighted “Awesome!” but Leif also loves his Junie B. Jones collection. As I type this, I hear him giggling every so often. He’s downstairs listening to the audiobook In a Glass Grimmly by Adam Gidwitz.

Then there are comics. Until last year, Leif had someone read Garfield to him every morning. Now he reads it, and other strips, to himself. Most mornings, all of us talk about which strips made us laugh and the updates in those with ongoing storylines (in recent years, Sally Forth has developed rich and relevant narratives, while Mary Worth, with a new team of artists and writers, is still like a train wreck I can’t help but glance at). Max, who once looked askance at my love of comics, now reads them while the coffee brews, before anyone else is up.

Cartoons made my kids look not only at newspapers, but also Newsweek (back in the day) and the New Yorker. The last page of the New Yorker is the first page we all read. That is where you’ll find their cartoon-captioning contest, and this page has taught me how the best cartooning is as much the caption as it is the art, for most submissions are heavy on the obvious, light on the ironic and overwritten. Hats off to the pros.

When I was a girl, Harvey, Disney and Archie comics filled rounders near the checkout lanes in grocery stores (Mad, a nonsaccharine favorite, was hidden in the magazine aisle). Like most kids, I read my comic book stash over and over. Reading anything repeatedly develops literacy skills, while the drawings help decode language without the stigma of little-kid picture books. All this makes comic books perfect for struggling readers.

In 2000, when I first purchased comics for children, I couldn’t find any that were particularly kid-friendly. At that time, superheroes all needed serious therapy to get over their dark and brooding psyches. Resorting to the internet, I found reprinted collections of Disney comics by Carl Barks, which led me to Gemstone Publishing and the “subscription” to Donald Duck Adventures. Later, the boys moved on to other comics, including classic superhero collections, and eventually graphic novels.

Today, Claude and Jules (who is also dyslexic), often sit at the table so engrossed with a book, they cannot hear me speaking. Currently, Jules is enjoying the Earth Sea series by Ursula LeGuin and Botany of Desire by Michael Pollan. Claude, who recently earned a degree in English literature and now writes for the Devil Strip, is reading Sparrow by Mary Doria Russell and A Connecticut Yankee in King Arthur’s Court by Mark Twain (again).

Meanwhile, the one who needed no help learning to read reads the least. However, Hugo just finished, and wants every American citizen to read, On Tyranny by Timothy Snyder.

And it all started with comics.

This was first published in the Akron Beacon Journal on July 28, 2017.