Connor's World
Surrounded by love and filled with determination, preschooler with disabilities 'will find his way'
It's supposed to be Connor McHugh's physical therapy session at Easter Seals DuPage. But somehow it has turned into the Connor McHugh show.
Therapist Sue Kim is trying hard to get the 4-year-old to stand up wearing a platform shoe that will raise his shorter leg, but this rambunctious child has an audience to entertain.
Therapist Sue Kim is trying hard to get the 4-year-old to stand up wearing a platform shoe that will raise his shorter leg, but this rambunctious child has an audience to entertain.
Not only is the room filled with therapists and kids with all kinds of disabilities, Connor has a newspaper reporter and photographer following him around, primarily because he got noticed hamming it up someplace else.
Not only is the room filled with therapists and kids with all kinds of disabilities, Connor has a newspaper reporter and photographer following him around, primarily because he got noticed hamming it up someplace else.
"I know that I will be the tallest one today, not you," Sue calls out in a vain attempt to lure Connor into standing up.
But Connor has figured out the world looks better when he hangs his head between his legs, and so he decides to dangle his blond hair and shout hello at the people behind him.
"You need to be a good boy, not a silly goose," Sue scolds. "Look at my face. If you want to play fun games, you have to do good work."
It's too late, though. The little boy from Wheaton is already batting his long eyelashes and flashing a cheeky smile at his entourage.
"Hey Connor, you think that you could get a personality?" another therapist calls out. Then, "You're a pretty good straight man, Sue."
In this room where physical diversity is embraced, this little boy's difference is so great it can't help but be noticed. Yet this is also where he is at his most comfortable.
The challenge will be as Connor gets older to make sure that comfort level stays with him wherever he goes.
In his own family, Connor McHugh was accepted from the beginning.
Even before his birth, when Patti McHugh learned the child she had been carrying for eight months would be born without arms and missing parts of his legs, she prepared for his arrival.
"When it is your child, it is your heart, it is like you," says Patti. "You suffer along with him."
It was an Easter Seals therapist, a woman she met by happenstance at her daughter's ballet class, who suggested to a devastated Patti that having such a child might be a gift.
When Connor arrived with arms amputated several inches above the elbow, a missing fibula bone, and one foot with only three toes, Patti and husband Dan celebrated all that Connor did have.
Their son's vital organs were intact. His facial features were perfectly formed. He had two feet.
Even Connor's brothers and sisters surprised Patti by looking past the newborn's missing parts.
"Why did we have to pray extra for Connor?" asked then 6-year-old Brandon. "He looks fine."
It's definitely a more shy Connor who arrives at St. Michael's Catholic School atop a red motor-powered wheelchair he drives with his feet.
The teacher here, Kristi Taylor, happily took on Connor at the beginning of last school year, and his classmates, for the most part, don't treat him as different.
Still, it's clear he's strangely fascinating to some of them, as one little boy can't resist brushing a finger on the pink stub that juts from Connor's shoulder.
In the classroom, Connor sits quietly in his wheelchair, rarely initiating conversation. He's more comfortable talking to adults than kids his own age, his mother says, though that's improving over time.
His teacher lifts him so he can participate in a daily ritual where students change a date and weather chart on the blackboard: Then she returns him to his wheelchair.
During art, Connor draws his entire family without arms, but the teacher says that's normal for kids whose sense of detail isn't developed.
When he's finished drawing, Connor is lifted up again to be placed on the floor, where he becomes absorbed in battle between two plastic toy animals, each lodged between his toes.
Only reluctantly does he allow a girl who's been watching him quietly to join in.
It is because his family has looked at Connor as a whole person that he has adapted so successfully.
Doctors offered to performs all kinds of surgeries to fix his legs and lengthen his amputated arms. One physician suggested that Connor's feet might be amputated so his leg could be reconstructed.
"He was thinking about how to fix the leg," says Patti. "Not about the whole person."
When Dr. Todd Simmons, of the Rehabilitation Institute of Chicago's Children's Amputee Clinic, met the McHughs. he said amputating the foot would deprive Connor of the only chance he had at fine-motor function.
Soon Patti would be telling people about Connor's amazing toes.
At six months, Connor started picking things up with his feet, after his sister Killeen put a string of beads between his toes.
Therapy, both through the state's early intervention program and later at Easter Seals, would help Connor take that skill even further.
In less than two years, Connor had become so talented with his feet that Patty watched her son, who couldn't yet sit up on his own, put a tiny plastic helmet on the head of a Lego figure.
When Connor visited his brother Brandon's class for a unit on disabilities, the toddler managed to stack up a dozen pennies between his toes, an achievement no child in the class could replicate.
And where he couldn't use his feet, Connor was a master problem solver, discovering other ways for his body to perform tasks. After months of literally rolling around the house, he learned to scoot on his butt to get around.
"He just has this calming effect," says Patti. "Not that it isn't difficult, but it all seems to work out with him."
It's one of those unstructured summer afternoons and Connor is using his raised wheelchair to vanquish the universe with a light-saber that's actually a tree branch.
"I'm Darth Vader," he calls out, swinging the branch wildly with his foot. "And you're Luke Skywalker."
Re-acting the Star Wars movie has been banned by Connor's parents, but the little boy takes advantage of the fact his mother is in the kitchen making lunch.
Eventually, however, the other three McHugh children — Brandon, Erin and Killeen — grow tired of the game. And Brandon easily breaks the "saber" over his knee.
Connor, unable to retaliate, screams.
On a different occasion, an enthusiastic Connor, with a football wedged under the arm of his wheelchair, tears across the lawn hoping to make a touchdown.
But even though Brandon gives him a head start, Connor always gets tagged out.
"No fair," he shouts, as this happens for the umpteenth time.
It's inside playing his favorite PlayStation baseball game that Connor isn't disappointed.
His feet wrapped around the joy stick, Connor loses every time, but he shouts with delight as his favorite players leap across the screen.
When he is particularly excited, Connor stops playing long enough to unconsciously wiggle his toes.
Even as the McHughs have accepted Connor's appearance, Patti has discovered it brings out some people's limited vision.
People asked Patti if Connor's arms had been accidentally tucked inside his coat, a problem she eventually solved by cutting off the sleeves of all his shirts.
It was always Patti who had to point out all the amazing things Connor did to compensate with his feet. But even now that she's learned to explain Connor's difference to people, she sometimes isn't sure how to perceive their reactions.
While she was thrilled when a friend managed to get her four children into the Cubs dugout at Wrigley Field to meet Sammy Sosa and other players, she felt unsettled that Connor's disability won the family this favor.
"Move over to the other side so that the players can see our special friend," the P.R. woman told the family's three oldest children as the baseball players filed inside.
It was a joy watching Connor tell players Heesop Choi and Corey Patterson, "I have a PlayStation game with you guys on it." But Patti realizes no number of visits with these stars will make up for that day when Connor will come home from school crying because a classmate has made fun of him.
Seated between his parents on the family room sofa, Connor McHugh listens quietly as Patti tells this reporter his life story.
But she's barely started talking about the complications surrounding the little boy's birth when he protests.
"Mom, don't talk about me and the hospital," he says.
Even at so young an age, Connor is sensitive about being represented in terms of his disability. He doesn't like using the special fork his occupational therapist at Easter Seals designed because it's not like the one his brothers and sisters use. He tells his mother to leave his plastic braces in the car so they melt in the sun. And although he has learned to enjoy his wheelchair, he doesn't always like the attention it draws.
"People, older ladies especially, think that because he is so cute and sweet, and because they feel sympathy, they feel that they can touch and rub his head," says Patti. "He would love to blend into the world the way other kids do, but he just doesn't."
Nor does Connor see his difference as significant enough to be the subject of a news story, something that's obvious when the reporter hands him a piece of paper so he can scribble his own article.
"I'm writing a story about (the reporter) doing nothing," Connor declares.
Patti was surprised one day when her son asked why a little boy they knew had a red blotch on his neck.
That he would notice such a small imperfection in another child is a source of immense amusement for his mother. But it is also a reminder that other children will start noticing Connor's differences all the more.
As other kids grow tall, Connor will not grow beyond 4 feet. As they become more independent, Connor will continue to need assistance with everyday tasks.
So when children stare or point — or even say loudly, as one child in the playground did recently, "Look that boy doesn't have arms" — Patti instructs her boy not to take notice.
While she's glad Connor followed her advice that time at the park, Connor later retells the afternoon's events as he would have liked them to play out.
"You told that kid I have arms, right, Mom?"
That kind of confidence will take her son far, says Patti. And given the choice between Connor having arms or changing his personality, she would want her child to remain as he is.
"I have no doubt that he will become a scientist or a motivational speaker, or something really cool," she says. "It will be hard, but he will find his way."
