Traveling together in a pick-up truck Veteran journalist Denny Bonavita recounts his experience with his adult son, Greg, who has Down syndrome (Getty Images photo)
By Denny Bonavita
I can’t decide which was more fun last month: The visit with my son Greg to visit my daughter Natalie or the 2,700-mile round trip to South Dakota and back.
The visit was a typical family reconnection with Natalie, her husband Matt, and children Cody, 9, and Emily, 5.
The trip itself was … delightful, hilarious, poignant. But it was not typical.
Greg is not typical. He has Down syndrome, which affects how he travels.
Telling you about that trip also files my “annual report.” Every October, near Greg’s birthday, I explain how my 5-foot-4, 180-pound fireplug son is faring in his group home residence, his sheltered workshop employment, and his group home living — because you folks foot the bill.
Most of Greg’s living expenses are paid for by tax dollars through county, state and federal programs, including Supplemental Security Income. What do you get for your money?
You are subsidizing a comedian — a very repetitious comedian.
Greg can’t read these sentences. A vision disorder, nystagmus (rapidly twitching eyeballs) only lets him sight-read the labels on bathroom doors (Thank goodness!), and navigate his IPad for Face Time calls to family members, listening to music and replaying favorite movies.
So Greg can’t make written lists. He makes verbal lists. One snippet: “Optober 18, my birday, porty-three, gonna be porty-four … OLD MAN!”
That is delightful … the first time. On our trip in my pickup truck, I heard it, oh, 3,769 times.
Greg reviews his “lists” out loud because that is how he remembers them. They then infect me as “ear worms” that cause me to silently shout, “I know, I KNOW!”
But I never say that out loud, because Greg is so doggone cheerful about his upcoming birthday. He also is cheerful about announcing breakfast, supper, his morning shower, and his intent to watch wrestling on TV that night. Whatever we might put onto a written list, Greg announces aloud and often.
As he moves into middle age, his lists help Greg to function well with assistance, and brighten others’ lives.
Greg moves glacially. He takes showers by himself, limping into bathrooms, using a walker to compensate for worsening genetic knee/hip problems.
On our trip, by the time he showered each morning, I had dressed, reviewed the news on a dozen internet sites, taken the luggage out to the truck, and downed a cup of coffee.
But Greg does get the job done. He dresses, packs his lunch and tends to his daily activities with an occasional prompt from a supervisor — most of the time. He also is a joker, sometimes non-verbally.
In the truck, when I said something silly, Greg would slowly and deliberately form a thumb-and-finger circle, move his left arm toward me, and then silently flick my ear with his snapped finger. He knows that irritates me, but does no real harm.
Typical son. Non-typical tactic. That’s Greg.
In South Dakota, Natalie renewed her special relationship with her older, but slower brother, even playing the Uno card game they enjoyed as children. Greg won a few hands. Did he cheat? My lips are sealed, but he does know how.
At age 9, Cody has seen enough of his Uncle Greg, in person and virtually through Face Time phone calls, to just smile and say hello.
At age 5, Emily worked through Greg being “weird,” though “weird” is perfectly legal, as we reminded her. Her thought processes followed the same path taken by two generations of older grandchildren.
“Who IS this? … I’m keeping my distance … he looks weird … he talks funny … Oh! Did he just smile at me? … Mommy seems to love him. So do Daddy and Grandpa. Cody is OK with him. I’ll walk a bit nearer … He didn’t scare me … Oh! He can be FUNNY! He just made me laugh … He’s my uncle, huh? Well … OK. Now I’m gonna get back to my drawing.”
Something like that occurs whenever many of us, adults included, first meet people who walk, talk and act differently. Within my lifetime, our society used to lock away many such people. We erroneously thought “different” meant “dangerous.” We learned better. How dangerous is Greg?
I got my ear flicked, oh, 3,769 times during those seven-hour daily drives. We both laughed a lot about it because, while Greg’s genetic abnormality can make him slow at some tasks, his genuine love of pro wrestling, pro football, people and practical jokes brightens lives.
You folks make Greg’s life-brightening presence among us possible through your tolerance when his slow gait keeps you waiting behind him in a line, through returning his smile with an accepting nod of your own — and through your tax dollars.
So, for another year, on behalf of Greg and our family … thank you.
Opinion contributor Denny Bonavita is a former editor/publisher at newspapers in DuBois, Brookville, New Bethlehem and Warren, Pa. He lives near Brookville, Pa. Readers may email him at [email protected]
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