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Living as an adult with Williams Syndrome: Ben & Emmy

Image of Emmy, Ben, and a guitarist performing on stage following a presentation.

BHMA LIVE (Long Term Independent Vocation) Members Emmy & Ben, as well as BHMA alum Brendan, had the opportunity recently to educate medical students from Quinnipiac Medical School about living as an adult with Williams Syndrome. Following the panel they demonstrated one frequently seen aspect of Williams Syndrome that they share: a love of music!  They performed for the medical students and, of course, received a standing ovation! We caught up with Ben & Emmy to talk about their presentation and about BHMA.

Here are some snippets from the interview:

What is important for people to know about Williams Syndrome?

Ben: Williams Syndrome is rare. People with it are very gifted and talented people- they often love to dance, or love to sing, and they love music! They love hanging around with other people. People with Williams Syndrome have a cocktail party personality, which means that we love meeting and talking to people. It’s just how we are- we love to introduce ourselves!

Emmy: People with Williams Syndrome are unique. We’re friendly, super kind, we really benefit from having support systems like family or friends. Some days it is easy and some days it is hard.

What is easy and what is  hard about becoming an adult with Williams Syndrome?

Ben: What’s easy is how we can make friends. We can get along with all sorts of people, like roommates.

Emmy: Something that can be hard are some of the physical issues. My bones sometimes feel tight or hurt. I also get tired really easily. I have to take breaks during the day. That’s really important. Another thing that can be hard is the emotional issues. I worry a lot. What helps me when I worry is being able to talk to people I trust. I also dance- I am a person who loves to dance. It makes me feel extra special, and it takes any bad stuff away.

Ben: I worry too, about things like relationships. I try to keep busy. Music helps me because I can listen to it when I’m happy or sad, and it touches me in different ways. It can help me to feel better.   

What skills is it important for a young adult with Williams Syndrome to learn in order to be more independent? What did you find helpful that you learned at BHMA?

Ben: They need to learn living skills. I learned different skills that I use now, like math, shopping, how to keep my room clean, and cooking on my own. I learned a lot of things before I moved into my own house off campus. I felt very confident. It’s hard work, but I was ready to be on my own!

Emmy: I’m really glad I learned things like being independent (out in the community), cooking, and how to stand up for myself. I still need help sometimes, but I know when to ask for it. 

What are you doing now for work?

Ben: I’m a member of the LIVE Music & Human Service band at BHMA. We are hired by nursing homes to perform for the residents that live there, so that they can have fun. We play music that they enjoy, such as Elvis Presley or 50’s music. I love working with music. Music is very important because it has a big impact in my life, and it helps me learn. I can perform songs that I never thought I could perform before.

Emmy: I have two jobs! I work in an office and I work at a market. I also still love to dance! 


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