Stories about: working with Down syndrome?

Self-advocate helps all

By Olivia Lepore

Nate at work

Learning that your child has been diagnosed with Down syndrome can be a challenging experience for many parents. At Boston Children’s Hospital, the Down Syndrome Program has found a way to give hope to both parents and children who come to the clinic—his name is Nate Simons. Simons is a valued 24-year-old member of the program’s staff, and like the children he interacts with at the clinic, he has Down syndrome.

Simons—who joined the team last fall—is the program’s second self-advocate, a two-year position funded by a generous gift to the hospital from a patient family. He was offered the role after successfully completing the same application process (cover letter, resume, and interview) as any other Boston Children’s employee.

Angela Lombardo, clinic coordinator, always felt there was something lacking from her team, like a puzzle with a missing piece, but when Nate joined the staff, she knew the puzzle was complete. “We are very grateful for the addition of the self-advocate position,” says Lombardo. “Nate—and his predecessor, Ben Majewski—have been remarkably successful matches.”

Simons works in the clinic two mornings each week, where he welcomes families upon their arrival to the clinic, administers paperwork to families, guides each family to their appropriate appointment room and performs various other tasks wherever the team needs him.

“I do what I can,” says Simons, who says his favorite part of the job is bringing toys to patients and watching the smiles light up their faces.

“He really helps patients and their parents,” says Lombardo. “The families who meet Nate are always so happy and relieved to see him when they return.”

Simons walks the 10 minutes to the hospital from his home in Brookline, where he lives independently in an apartment with his roommate and best friend. The two met while attending the Riverview School for students with learning disabilities in East Sandwich, Mass. Before that, Simons graduated from North Reading High School.

Simons is currently participating in an internship through the Jewish Vocational Services (JVS) “Transitions to Work” program, which teaches job skills to people with documented disabilities. His attendance will soon lead to a second job at CVS in the Boston area. When he’s not working, Simons enjoys playing basketball; he won first place in last year’s Special Olympics basketball event. He also runs track every Sunday through the Brookline Recreation Department.

All of Simons’ colleagues at Boston Children’s agree that his role as self-advocate is essential to the Down Syndrome Program, and Lombardo hopes it’s a position that the program can make permanent in the future. “We are really excited because there are a lot of programs that could follow this example and have self-advocates to represent their patient population,” says Lombardo. “It’s a win-win for everyone.”

 

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Let’s get real about Down syndrome

by Brian Skotko, physician in Children’s Hospital Boston Down Syndrome Program

Brian Skotko, MD, MPP

In mere months, pregnant American women might be able to learn if their fetuses have Down syndrome with a simple blood test. The test will be perfectly safe, eliminating the small, but real, chance of miscarriage that comes with our current diagnostic options. If these tests do become a routine part of obstetric care, thousands of expectant parents will be receiving a phone call from their healthcare provider each year with this message: your fetus has Down syndrome.

That will be a panicked moment, according to women studied in previous research. But, what should healthcare professionals say about Down syndrome? What does it really mean to have Down syndrome? Six years ago, Sue Levine, Dr. Rick Goldstein, and I set out to find the answer to that question. Rather than let Rahm Emmanuel or GQ Magazine have the final word on what life is like with Down syndrome, we spoke to the people who truly understand.

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Team player

Have you seen this great New England Cable News story about Ben Majewski, a 22 year-old student who works at Children’s Hospital Boston’s Down Syndrome Program?

Needless to say, we’re big fans of Ben’s work. To help spread the news of his many accomplishments, we’re sharing a Dream story written about him last year, right around the time when he first came on board as a Children’s employee.

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, the clinic’s new resource specialist, they relax almost immediately.

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