To read on The Washington Post website:
Going on offense vs. Down syndrome
Most people saw limits for Frankie Antonelli. Parents Frank and Debbie saw potential.
MOUNT PLEASANT, S.C. — The dogging question for any athlete is whether their competitive values mean anything in the real world. Here it was for Debbie and Frank Antonelli. What were all the sweat-soaked shirts and the worn-soled sneakers for when their infant son was on oxygen, facing a lifetime of impairments from slowed motor skills to cognitive deficits?
It was a random error in cell division, the pediatric specialist said. Down syndrome was an accident, a faulty extra copy of a single chromosome. “All the rest of them are yours,” he said.
They had counted with an unthinking confidence on having healthy kids, maybe even a team roster’s worth. She played basketball at North Carolina State before becoming a sportscaster, and he hit .400 for the Columbia University baseball team before making a career in elite sports management, and they hoped to add some quality little strivers to the general population. Their first child was an easy birth, and they were so confident of their second that she played nine holes of golf the day he was born. Then he came out scrunched up with the cord around his neck, and holes in his heart.
The doctors spoke in dead-end terms, even the ones who tried to be positive. Though it was 1997 and not the Victorian Age, one said, “Don’t let anybody tell you to institutionalize him.” Statistics showed most Down syndrome children would not see 50.
He won’t develop properly, they said, or play games like other children. “I can’t tell you how many times I heard the words can’t and won’t,” Debbie says. Defeatist words. They seemed to apply as much to her, as to him. You can’t have a career with a disabled child. You won’t be able to work.
But the Antonellis were athletes, and athletes don’t deal in can’t and won’t. They deal in can, and will.
Eighteen years later, Frankie Antonelli is a junior in high school with sparkling eyes, and a well-defined V shape from fitness training. “Hi, I’m Frankie, I’m a celebrity,” he says, wise-guy-like as he introduces himself to a reporter. With a motor-speech impediment that doesn’t dull his meaning, he proceeds to argue with some spirit that he’s the best basketball player in the Antonelli Driveway Series.
That’s the hectic weekly competition outside the family garage in Mount Pleasant, S.C.: Frankie and his older brother Joey, 20, against Debbie, who still has Division I shooting form, and her youngest son Patrick, 15. The results are pretty much a deadlock, according to Frank Sr., who referees.
How the Antonellis got from the hospital to a pickup game is a question worth asking. Debbie answers, “We’re all about offense around here.” In essence, a sports-minded family decided to launch a private experiment in human potential: How much could they affect a genetic glitch, they wondered, with old-fashioned athletic conditioning?
Down syndrome affects about 400,000 families in the United States; it’s the most common form of chromosomal disorder, showing in about one out of every 700 babies. According to Priya Sunil Kishnani of the Duke Children’s Hospital Comprehensive Down Syndrome Program, who examines Frankie yearly, there is a wide spectrum of ability in people with the disorder that isn’t explained solely by genetics.
“Some children have poor speech or communication and other aspects of development, and others are very high functioning,” she says. “The environment also plays a very important role. There are all these interactions between genes, but there is also the whole environmental factor, the home environment and what they’re exposed to.”
The Antonellis decided to see what an actively competitive home environment could do for Frankie: How might he develop if they thought in terms of maximizing his abilities instead of disabilities? “We know he has limitations,” Frank says. “But why should we state those? Why shouldn’t we find out what they are almost by accident?”
It hasn’t always been the most organized experiment, conducted hectically between two parents working full time while raising three boys. For more than 20 years, Debbie has called 70 to 80 college basketball games a season (both women’s and men’s) as a sharply-observant, contralto-voiced analyst for Fox Sports, ESPN, Raycom, CBS and Westwood One. She hesitates to count the exact number of broadcasts she works. “I don’t really want to know how much I’m gone, because I fear I’ll lose my mother of the year status and I don’t really want to jeopardize that,” she says.
Frank, president of the Charleston-based athlete and event management firm Empire Sports, holds things down at home while she travels. She calls as many as four games a week, often commuting by car and driving through the night to make another practice or tip off.
The time in the car pales compared to her drive to see what her son can and will do. “What’s your dream, Frankie?” his mother asks him one evening, as she accelerates between basketball and soccer practices.
“To go to the prom,” he says.
Overcoming physical limitations
That first night at the hospital back in 1997, a nurse asked if they wanted a priest in case the baby needed last rites. After surgery repaired his heart, he was on monitors and oxygen machines for the next eight months. Debbie lapsed into a semi-silent depression, as she listened tensely day after day to the ticking of the machines to be sure he was still breathing, while also trying to care for Joey, a toddler, “who didn’t get even close to 50 percent of me,” Debbie says.
Frank kept their equilibrium, a gentle-voiced, liquid-eyed man who slept with the oxygen tank under his side of the bed. He tended to the machines, changing the tanks in the middle of the night, though it meant sleepwalking through his job at the time, managing golf courses for Jack Nicklaus in Dayton, Ohio.
Finally, Frankie came off the machines and they began to rest easier and to think about how to raise a Down syndrome child. Their pediatrician, David Roer, who had become a good friend, reassured them, “I’m not going to sugarcoat it, you got a battle ahead of you. But he’s going to be fine and you’re going to be fine.”
It was Frank who first insisted one faulty chromosome shouldn’t change their lives. “We’re not going to stop what we’re doing,” he said.
When a call came in from ESPN offering Debbie a game assignment, he said, “Go. I’ll take care of the kids.” As she studied some film and talked basketball, he noticed, the depression lifted a little. “It was the only time she was like herself again,” he says.
They moved to South Carolina so she could get a fresh start and he could partner in building a new golf course, Bull’s Bay, and open the management firm. But she was still low, angst-ridden about Frankie’s health and how to be a mother to a disabled child. At an Atlantic Coast Conference men’s game, when a team of kids from Special Olympics was scheduled to perform at halftime, she averted her eyes, took off her earpiece, and left the floor. “I couldn’t watch,” she says. “Couldn’t do it.” She was afraid she would cry through the second half of the telecast.
Her former coach, the legendary Kay Yow of North Carolina State, finally snapped her out of it. Yow, who was in her own long-running battle with breast cancer, sat down next to her at the 1998 NCAA Women’s Final Four.
“How you doing?” Yow asked.
“I’m fine,” Debbie said.
“No, how are you doing?” Yow said, more firmly.
“I’m having a hard time,” Debbie said.
Yow went into coaching mode. From 1984 to 1986, Debbie Mulligan had been a too-slow guard who nevertheless led the Wolfpack to three straight NCAA tournament appearances. Now Yow talked to her like she was that player again. “God’s not always going to give you roses,” she said.
“Swish your feet and get out,” Yow instructed Debbie.
The conversation altered everything. Debbie went home and told Frank, “That’s it. No more self-pity.” They would approach Down syndrome like competitors, and become the best parents to a special-needs child they could be. Just because Frankie had weak motor function, she announced, they weren’t going to have a child who sat around and watched TV. “That’s not what we do,” Debbie said. “I’ll live in a trailer before he just sits on the couch.”
They didn’t understand the science behind Down syndrome, terms like “trisomy” and “aneuploidy.” But they did know human performance and how to surpass expectations. They had met at Ohio University, where they both got master’s degrees in sports management while playing tireless games of rec ball together. They were still at their playing weights 10 years later. They knew the value of conditioning, how to deal with reversals, how to overcome physical limitations. And they knew teamwork.
“We’re both Division I athletes, we both worked hard at our craft, we’ve been challenged and been at the bottom and we’ve picked ourselves up and we’ve overcome,” Debbie says. “If you’ve ever competed — really competed — then you’ve dived into something heart and soul. I’d done that and so had Frank.”
There were some aspects of Frankie’s development they obviously couldn’t alter — they couldn’t make him taller. But Debbie had always been told she was too short to be a great basketball player, too. That didn’t mean there was no way to compensate for weaknesses that came with DS, such as hypotonia, muscle laxity. Debbie began to take Frankie to a local public swimming pool for lessons, and forbade him to use the ladder. She wanted him to build strength by pushing himself out of the pool. DS children also have balance issues, so she and Frank took him on bike rides. First they towed him in a bucket, then taught him to sit upright on a tagalong double-seater, then put him on training wheels, and finally weaned him off of those.
Since Down syndrome can come with gait issues, they consulted a top foot specialist who treated college basketball players. Each year Frankie got custom-designed orthotics to make sure his hips and ankles were properly aligned when he walked. To deal with his speech impediment, they hired a therapist and instituted a rule that he had to talk in complete sentences.
When Joey and Patrick were taught to clear their own plates from the table, so was Frankie. The family rule was that anyone who got out of line lost everything with an on-off switch, from games to TVs; it included Frankie. At family gatherings they told his grandparents and aunts and uncles, “Don’t give him any shortcuts, he’s got the same expectations as the other boys.”
Joey and Patrick learned to tell their playmates, “He can do everything you can. It just takes him a little longer.”
To be sure they were on the right track, the Antonellis took Frankie to Duke’s clinic for annual checkups. Kishnani affirmed what their instincts told them. Frankie was on the high end of the spectrum of children with Down syndrome, and capable of meeting challenges physically and cognitively. In fact, he was flourishing.
“Sometimes we don’t recognize that they can do it,” Krishnani says, “and sometimes we don’t give them the opportunity to do it, and sometimes we don’t have the patience, because it’s just easier to take care of it than to let a child with a disability try to do it, because it takes so much more time. Frankie represents an example of what an individual can do if given the opportunity.”
But as Frankie moved into junior high and high school, the Antonellis found that not everyone set the bar as high as they did. Frankie was defined as having an “Educable Intellectual Disability,” which meant he needed a modified curriculum called an Individual Education Program (IEP). But too often apathetic teachers and administrators interpreted it as “babysitting,” Frank says. They simply gave him something basic to do to pass the time, like learning to tie shoes.
Debbie chafed at the separateness of special ed. Her team instincts told her that completely isolating kids for their weaknesses was counterproductive and would only make those weaknesses more pronounced. She fought for inclusion, demanding that he spend at least part of the school day with the rest of the students.
“When you went to school did you ever see the special ed kids?” Debbie asks rhetorically. “I never did. You never saw them. They were separate. They had separate classes, they ate lunch separately.”
When Debbie discovered that some universities offered continuing education programs for high-functioning students with intellectual disabilities, it was a revelation. Frankie might be able to go to college — no one had ever told her that. She studied the requirements: he’d need reading comprehension, basic math, and speech classes. He’d need to count money, read a calendar, follow a schedule, and self-correct.
“College might be an option, so we’re not going to be just tying shoes,” she announced to his teachers. “I want him to have options just like I want my other two boys to have options.”
Debbie designed an IEP aimed at getting Frankie college-ready. But it required teachers who were creative and flexible, and those were in short supply. One afternoon during his eighth-grade year Debbie found herself standing at the front desk of Frankie’s middle school with her voice rising. Frankie was supposed to work in the school office to help him meet his communication-speech goal. But his teacher hadn’t even bothered to send him.
“Does anybody around here care?” Debbie said, her voice elevating to a near shout. “Is anyone gonna do their job?”
They enrolled Frankie in Wando High School, the largest public school in the state, a 4,000-student institution where Joey and all of his friends went. His study program called for him to spend part of the day in a general setting with his peers, but Debbie discovered this wasn’t happening.
“He’s gonna tell you he can’t, and you’re gonna tell him he can.”
She beseeched the school administrators, “What would you do, if you were me? Would you just give up?”
Her resilience won out. Gradually, the Antonellis formed a team of teachers and therapists to collaborate with what the family wanted. “Are you willing?” Debbie would ask them. “Are you invested in helping him or are you gonna just go through the motions?”
Shawntell Pace was willing — she was a cheerful young communications instructor with a class called Tribe Talk, in which students learned to work with digital video and recording equipment, and troubleshoot their own issues.
She’d never had a special ed student before. But Debbie told her, “Treat him like the other kids. He can do what you ask, and he will.” Frankie learned to set up a tripod and use a video camera, and to memorize speeches for videos. “He can memorize a script by lunchtime,” Pace says. “He catches on quick and I don’t cut him any slack.”
Diane McGee was willing. She was a masterly special ed English teacher with a wisecracking enthusiasm, who didn’t talk down to students and could hold their attention on a book for 90 minutes. When she introduced Frankie’s class to Jack London’s “White Fang,” she said, “I’m gonna give you a head’s up, people die and animals die. It’s going to be hard but we’ll muddle through.”
Mel O’Keefe, a local fitness trainer, was willing. As Frankie grew toward manhood Debbie began to worry about his weight — Down syndrome comes with a slow metabolism. When he got up to 169 pounds, she cut out mac and cheese and sent him three times a week to the trainer.
“He’s gonna tell you he can’t, and you’re gonna tell him he can,” Debbie said.
At first, Frankie couldn’t lift any more weight than his mother. That was two years ago. Since then he’s lost 20 pounds of fat and put on 10 pounds of muscle. On a recent afternoon he chinned himself from a high bar, and did an assortment of lifts with 30-pound weights on cables. “I’m coming to your house for dinner,” he told Mel, grinning.
When he finished the workout, Mel asked, “How do you feel?”
“Strong and powerful,” Frankie said.
“Strong and powerful,” Debbie repeated.
It was the end of another day of shuttling to and from schools and practices. In the darkening car, Debbie asked, “What’s your dream, Frankie?”
He said, “I want to be bionic.”
Seeking full independence
In October, Debbie took Frankie to see Clemson University. As they strolled around campus she glanced at her son and realized that in his black leather jacket and black jeans he looked like any other frat boy. At the front door of the administration building, two attractive female student greeters waved and said brightly, “Welcome to Clemson.”
He wheeled around and said to his mother, “Where do I sign up?”
Clemson offers an alternative certificate program called LIFE, which allows students with intellectual disabilities to experience college. The two-year plan, which costs about $12,000 a semester, teaches independence and self-advocacy, with courses from finance to vocational. Students live on campus in supported apartments, attend sports events, join clubs. (…)