My son has spastic quadriplegia cerebral palsy. But there’s so much more you should know about him.

Meet Joe Grillo
1116_grillo01_oneuseonly

Photograph by Matt Moyer

My son is a constant loop in my thought track.

My son is the boy you can hear from outside the house or from the other room, making sounds that seem to have no form.

My son is quiet, sometimes for hours at a time.

My son spends most of his time inside, in his wheelchair or on the floor, watching movies, listening to music or stories, playing with me.

Joe Grillo lives with his parents in Sautee Nacoochee, in northeast Georgia. One of his longtime companions is his cat, Fatty (left).
Joe Grillo lives with his parents in Sautee Nacoochee, in northeast Georgia. One of his longtime companions is his cat, Fatty (left).

Photograph by Matt Moyer

My son is the boy with clenched hands, held up in the air as if in protest, tight hands that close like vise grips because the part of his brain that says “let go” is on sabbatical.

My son stands out in a crowd even though he can’t stand by himself.

My son was diagnosed as an infant with spastic quadriplegia cerebral palsy, and if you’re sincerely interested in learning more, there’s a lot of great information on the internet.

My son is fine, and that’s exactly what I’ll say when you ask, “What’s wrong with him?”

Getting Joe ready for school—and for the 45-minute bus ride there—takes about an hour each morning.
Getting Joe ready for school—and for the 45-minute bus ride there—takes about an hour each morning.

Photograph by Matt Moyer

Joe’s condition means the balance of swallowing and breathing can make consuming food by mouth difficult, so most of his nutrition comes via a port directly into his stomach. His chair has been outfitted with a special iPad that serves as a communication device, controlled by a switch he operates with his head.

Photograph by Matt Moyer

Joe recently completed middle school in the special education classroom of Julie Collins.

Photograph by Matt Moyer

My son’s diagnosis doesn’t define who he is. Everyone is different and should be valued for their individuality, including people diagnosed with spastic quadriplegia cerebral palsy.

My son sometimes has scratches on his smooth and brilliant face, some of them fading, some of them fresh, because he can’t quite control his hands, and because his fingernails often are really hard to trim close with those clenched hands.

My son has a smile with no strings attached, a gigantic smile for you and especially for me whenever I enter his space, because my son, inexplicably, hasn’t tired of his old man yet.

My son can walk, with help, and for those who are willing to help, it’s time well spent. In fact, you might find yourself dancing with him once you get him up and going.

Joe has worked with Dahlonega physical therapist Terrie Millard (left) for 12 years.

Photograph by Matt Moyer

My son laughs at fart sounds and roughhousing and curse words and at other people’s laughter because he wants in on the joke, expects to be in on the joke, in spite of a world that mostly considers him an afterthought.

My son is a minority within a minority, but he doesn’t have many advocates crying out for his civil and human rights.

My son may not deserve your love, but he deserves your respect.

My son and his parents live life on the brink, and the brink is consistently being redefined or moved.

My son loves superheroes and music, especially music.

Joe enjoys live music, especially when his father, Jerry (the story's author) plays guitar.
Joe enjoys live music, especially when his father, Jerry (the story’s author) plays guitar.

Photograph by Matt Moyer

My son has good taste in music, but is patient enough to listen when I play guitar, and encourages me by singing along to whatever tune I happen to be scratching at, especially “Ripple” by the Grateful Dead. He loves “Ripple.”

My son sings out loud in wordless joy, smiling at his mother’s silly dancing, always up for a live show, always unabashed in his appreciation.

My son loves an adventure, especially if it includes a fast, bumpy ride that puts the wind in his face, which inevitably elicits squeals and delighted screams.

Joe likes speed, especially when his mother, Jane, takes him for a spin down their street (above).
Joe likes speed, especially when his mother, Jane, takes him for a spin down their street (above).

Photograph by Matt Moyer

My son cries when I sneeze, almost always, tears and everything. But he isn’t a baby, and if you respect him, you won’t speak to him like one. He is quirky.

My son is brave, proud, strong, and sincere.

My son is social, and friendly, and forgiving, and honest, and damaged, and perfect.

My son is a troublemaker, sometimes frustrating, sometimes scary, and very funny.

My son is a work in progress, like your son.

Joe getting ready for bed after a bath. People with spastic quadriplegia cerebral palsy have poor muscle control, which means their facial expressions can contort without warning.
Joe getting ready for bed after a bath. People with spastic quadriplegia cerebral palsy have poor muscle control, which means their facial expressions can contort without warning.

Photograph by Matt Moyer

Likewise, "spastic" refers to the muscle stiffness that can afflict portions of the body, such as Joe's feet. But Joe's character is distinct, like any other boy's.
Likewise, “spastic” refers to the muscle stiffness that can afflict portions of the body, such as Joe’s feet. But Joe’s character is distinct, like any other boy’s.

Photograph by Matt Moyer

My son is a teacher.

My son is wonderful company, and his company is a gift that few people seem to want or understand, but it is a gift that I can’t seem to get enough of.

My son is loved, fiercely.

My son has very few friends his own age. He doesn’t have many visitors. But if he gets lonely, he doesn’t show it, at least not in ways we understand yet.

My son always says please and thank you, without using those words.

My son hates long drives. For now.

My son is approachable and accepting, and if you really want to know him or be with him, he is within reach, and he’s totally worth your time.

My son can be a tough taskmaster. He doesn’t give his parents any days off, just like other sons.

Joe is cared for by a range of medical specialists, but no one knows him like his parents. Over the years there have been numerous hospital stays and sleepless nights. But Joe remains a happy, busy boy with loads of patience, seemingly beyond his years.
Joe is cared for by a range of medical specialists, but no one knows him like his parents. Over the years there have been numerous hospital stays and sleepless nights. But Joe remains a happy, busy boy with loads of patience, seemingly beyond his years.

Photograph by Matt Moyer

My son is unique.

My son needs me, and his needs are ever changing, and the older he gets, the more he needs me, and the more I grow.

My son would be left behind if it were not for a handful of people who are physically capable and otherwise compelled to care for him, and the bigger he gets, the harder it is to care for him, and the easier it is to leave him behind.

My son will never be left behind as long as I’m alive.

My son is a constant loop in my thought track, and I don’t plan on pressing the stop button, because he’s my son.

Bedtime rituals involve playing with Dad.
Bedtime rituals involve playing with Dad.

Photograph by Matt Moyer

Advertisement