website builder

By Paul Daugherty

Lessons I Learned from Raising a Child With Special Needs

It took Jillian Daugherty half an hour to learn to spell store. Jillian studied at the kitchen table, face scrunched in devout concentration, with an index card bearing the word’s definition: “A retail establishment selling items to the public.’’ Dad, across the kitchen table, was learning something else more valuable.

“S-O,’’ Jillian began. She was in 3rd grade, and this was her homework. Eight spelling words a night, twice a week. Some she got quickly. Some took a little longer. And some were words like STORE.

“No, sweetie,’’ I said. “Remember your blends.’’ I made a sssstuh sound.

“S-T,’’ Jillian said.

“Right.’’

“S-T-A …’’

“Not quite,’’ I said. “Aw. Aw. What does that sound like?’’

Jillian replied that it sounded like A and H.

“What else?’’ I said.

“O,’’ she said.

“Yes.’’

Some nights, homework was a breeze. Others it was a frustration hurricane. When you are a typical child, spelling store might take 30 seconds. When you are a child born with Down syndrome, it could take longer than that.

“S-T-O,’’ Jillian said.

I said, “That’s good.”

“S-T-O-E …’’

“Almost.’’

We’d start homework after dinner, 7:30 or so. Often, we’d finish close to 10. Jillian liked homework. My wife and I alternated nights, the other parent being responsible for dinner. We honored Jillian’s effort with our patience. She deserved as much.

When Jillian came up with “S-T-O-R-E,’’ we highfived and I did a little dance around the room. “S-T-O-R-E, store-store-store!’’ I yelled, like a junior high cheerleader. Jillian learned to spell another word. I added to the store room of gifts my daughter has given me. It’s not patience I’m talking about, though patience surely was required. It’s the life-enhancing and too-often-ignored virtue of slowing down.

You’ve heard this: Kids born with Down syndrome can do almost everything anyone else can do. It just takes them a little longer. Most of us don’t know how to slow down. Some of us wouldn’t enjoy it if we did. I’m here to tell you, slowing down is the best thing that ever happened to our family, and Jillian is the reason it did.

“Life is what happens when we’re busy making other plans,’’ John Lennon said, unwittingly defining the American suburban bargain. We seek what’s next, we push our kids to hyper-achieve, and we live vicariously through their successes. We do everything but let them be kids. We don’t linger.

Jillian taught us to linger. I cannot tell you what Jillian’s brother Kelly, three years older, wore to his first formal dance. I can tell you what Jillian wore: teal dress, white heels, and the reddest lipstick ever.

I can’t recall teaching Kelly how to ride a bike. I’m supposing it was an hour or two and “have fun!’’ Tenyear- old Jillian needed three weeks. I remember every hour we spent on the long, common drive we shared with three other houses. “Do you have me, Dad?’’ she’d ask. Her bike was so tiny, it looked like something a circus clown would ride, in between the elephants.

I started with 10 fingers clutching the back of her seat as she pedaled down the lane. Every session, I’d release one more finger. That last session – a blue-perfect day in midspring, tulips aflame in the garden – I let my index finger slide from the seat. “You have me, Dad?’’ Jillian asked.

She pedaled down the lane and away from me. “I’ll always have you, Jillian,’’ I said.

Have you ever read Blue Highways, the book by William Least Heat Moon? It’s about his travels around America. Moon got off the interstates and on to the “blue highways,’’ the blue-colored squiggles on the road maps, when we used to have road maps. He lingered. That’s how he discovered America.

That’s how we discovered Jillian. Her life is a blue highway. She taught us it’s the only way to travel. “Stop and smell the roses’’ isn’t just a cliché.

We learned with Jillian that moments are what really count — minor moments — snapshots like the instant she rode a bike on her own. Riding a bike was something she wasn’t supposed to be able to do. She and I now ride 20 miles on a local trail.

Dating was another in the “Can’t Do Catalog” for people born with Down syndrome. Jillian’s date that night is her husband of three years today.

If you’re going to work as hard as Kerry, Jillian, and I worked, you better be ready to celebrate the happy outcomes. The books tell you not to sweat the small stuff. We disagree. The best stuff in life is the small stuff, and the only way you taste it fully is to respect it with your time. Seize the small stuff. Then linger.

I’ve applied this to everything I do. I don’t waste a sunset, I don’t overlook a cardinal on the feeder outside my office window. I’m never so preoccupied that I can’t listen to my wife, kids, family, or friends. They are who I am.

I’m not special, unless you count the luck I’ve had with Jillian in my life. She lives a life free of envy, guile, and agendas. She’s empathetic, she has compassion, and she’s loyal. What matters most to Jillian is who she loves and who loves her. She takes her time moving through the world.

Jillian Daugherty Mavriplis is 28 now. She graduated high school, attended four years of college at Northern Kentucky University, earning 30 credit hours and walking the graduation line with her then-boyfriend and nowhusband, Ryan. Jillian works two jobs, as a teacher’s assistant in the local public elementary school and in the athletic office of her alma mater. To get to work at NKU, Jillian takes four metro buses a day.

She and Ryan live independently in a two-bedroom townhouse for which they pay all the rent. (“Yay!” Dad says.) They shop, they cook, they clean, they walk their dog. Sound like others you know?

They see the world without jaundiced eyes. They take the time to have a good time. They are who the rest of us should be, but aren’t. They own innately what I’ve had to earn: The ability to live a measured life. Nothing has ever mattered more to me.

For more articles on legacy planning, click here to subscribe to Legacy Arts Magazine.

Paul Daugherty is the author of four books and is an award-winning sports columnist at the Cincinnati Enquirer. In 2013 the Associated Press named him the nation’s best newspaper sports columnist. A story he wrote that year about former Cincinnati Bengals linebacker Reggie Williams also was judged the best sports feature in the nation. He has been named Ohio’s best sports columnist eight times. His books include a biography of former NFL All Pro receiver Chad Johnson, a self-help book with Hall of Fame catcher Johnny Bench, a collection of his newspaper sports columns, and An Uncomplicated Life. Daugherty and his wife Kerry are empty nesters residing in suburban Cincinnati. They have two children – son Kelly, 31, and daughter Jillian, 28 – and a 1-year-old tabby cat named Dylan. Paul Daugherty’s memoir of raising his daughter Jillian, An Uncomplicated Life, was published by Harper Collins in 2015. It is available at Amazon.com, on all platforms. Paul and Jillian also have spoken extensively all over the country, to groups as diverse as local, state and national Down Syndrome Associations, and company CEOs interested in hiring people with intellectual disabilities. You can reach Paul Daugherty via his website, pdaugherty.com. Also on Facebook: Paul Daugherty or pauldaughertywriter. Twitter: @enquirerdoc.