By Stephen Coldwell
The young couple in the waiting room of Children’s Hospital Boston’s Down Syndrome Program looks nervous. It’s the first time they’ve brought their 8-month-old son, Sam, to the clinic, and they’re
uncertain just what to expect. But when Clinic Coordinator, Angela Lombardo, introduces them to Ben Majewski, 19, the clinic’s new resource specialist, they relax almost immediately.
Majewski, who joined the clinic’s team in January, looks every inch the professional dressed in what he calls his “Clark Kent outfit:” glasses, pin stripes and tie. With a wide grin and a wink, he confides that the tie he’s wearing is actually his dad’s. Everyone smiles. When the family comes out of their first appointment with Emily Davidson, MD, MPH, the program’s director, they look relieved to find Majewski waiting. He pulls out a complex flow chart of their upcoming appointments and explains what the family will be doing next. ”I just love that he’s here,” says the mom. “It means more than I can express to see him doing this job.” For the young parents anxious about their child’s future, Majewski—who has Down syndrome—represents a world of opportunities.
The Down Syndrome Program, which sees 40 patients a month, offers specialized services for children with Down syndrome and their families. The program had long wanted to hire someone with Down syndrome who could act as a role model for younger children and offer support to parents. “We thought, Who would be better than a self-advocate to share information about available support with our families?” says Davidson. Majewski saw the job listed with the Massachusetts Down Syndrome Congress and submitted an impressive resume that included grocery shopping for the elderly, working with the MSPCA, fluency in sign language and fundraising for Advocates in Motion, a group that provides support and services to people with special needs. As a final candidate, he worked directly with Lombardo for a week to demonstrate that he was, as Majewski puts it, the only guy for the job.
That sentiment is shared by Majewski’s co-workers, who are constantly charmed by his enthusiasm and sense of humor. Two days a week, he helps with clerical tasks and acts as a “traffic cop,” walking patients and their families through each stop on their itinerary of check-ups that make up a typical visit to the clinic. At each visit, children receive a comprehensive review of their health from a team that includes developmental pediatricians, physical therapists, nutritionists, speech pathologists, dentists and audiologists. Perhaps most importantly, the clinic connects families to other parents and support groups, often during their first prenatal visits after receiving a Down syndrome diagnosis.
In addition to his work at Children’s, Majewski buses tables at a restaurant in Newton on the weekends. While he loves the opportunity to meet new people, he’s wary of some of the clientele. “Sometimes we get Yankees fans in there,” he says. “We try not to intimidate them too much.” Majewski lights up at the subject of the Red Sox—of all the sports he watches and plays, baseball is his favorite. For four years in high school, he managed the Newton North Tigers baseball team, even garnering a mention in a book by Boston Globe columnist Dan Shaughnessey.
Majewski has also competed in the Special Olympics for a number of years with his basketball team, the Heated Lions. Due to Special Olympics regulations that limit participants to competing in one event only, Ben has a difficult choice ahead of him this year. He started skiing about five years ago and feels like he’s ready to ski competitively, but knows he’s still needed on the basketball court. “I’m the big guy who can make the outside shots,” he says. “I’m a team guy, and if they need me, I’ll be there.”
While there’s much he can do, Majewski maintains a sense of humor about things he can’t. As a result of childhood ear infections, Majewski has severe hearing loss, which he compensates for with a hearing aid and a digital amplification system. Someone working closely with Majewski can hang the iPod-size device around their neck and have their words broadcast directly to Majewski’s hearing aid. He warns first-time users to remove it before going to the rest room. “I want to hear you,” he laughs. “But I don’t want to hear everything.” Although he has finished his high school requirements, Majewski is eligible for special education until he’s 22, so he recently completed a biology course that left him fascinated with genetics. “He’s such a social guy,” says his mom, Lisa. “Dancing, fishing, horseback riding—I can’t keep track of everything he does.” Majewski says his high level of energy comes naturally. “I guess I’ve just got a real love of life going on,” he says.
Sharing that enthusiasm with patients and their families is Majewski’s favorite part of the job. In his short time with the Down Syndrome Program, he’s become a regular fixture who families look forward to seeing. He’s there helping set things up in the morning when the first patient arrives and waving goodbye to the last family walking out the door at the end of the day. “When families see me working here, I hope it helps,” he says. “I hope it gives them an ability to see a future for their children.”