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Changing Lives, Changing Communities

A note from Rocio Alonso, Senior Adaptive Designer & Fabricator:

A couple of weeks ago we received a phone call from Chardell, the mom of a 7-year-old boy named Benjamin with Phelan-McDermid Syndrome. Chardell and her family were having a hard time finding the right adaptation that would allow Benjamin to sit comfortably at the dining room table — so our team at ADA organized a few visits/fittings to see how we could help.

Many families with children older than 4 or 5 years have difficulty finding a proper booster seat that meets their specific needs. In many cases, it is a matter of providing trunk and foot support, or perhaps elevating the child to a proper height so that their arms can reach the table properly. Benjamin had a hard time sitting still during dinnertime and often ended up walking around the table. Additionally, he needed someone to sit next to him to, hand-over-hand, help him eat; and either mom or dad would have to put their leg across the dining chair to fill the space between his body and the backrest of the chair for added support.

Over 2 weeks, with input from Benjamin’s family and Occupational Therapist, and the help of our amazing interns and volunteers, we built a customized booster seat that fit on top of Benjamin’s existing dining chair. This new seat brings Benjamin to eye-level with his family, and provides enough core support so he can eat almost independently. Mom and dad now have more time to take care of Benjamin’s other siblings and in the words of Chardell: “Dinnertime went from night to day.”

Here are some pictures of Benjamin’s fittings and a link to an exciting video the family took of Benjamin at the table.

Photo: First fitting – we mocked up a seating setting with all sorts of pieces. This helped us review the angles and other features with the therapist.

Photo: Second fitting happened 5 hours after the first one. With the help of Diego and Milton (2 high school students) we were able to have an unfinished model to try.

Photo: Finished Equipment for use at home

Benjamin’s family was so excited by the booster seat, that they decided to share the impact ADA had on their family with hundreds of parents at the Phelan-McDermid Syndrome Foundation’s 2016 International Family Conference in Orlando, Florida. With the assistance of volunteers, ADA cut sheets of cardboard to size, and with the help of their friends and neighbors, Benjamin’s family assembled 307 easels for every family at the conference.

As simple as it may seem, ADA’s smartphone Easel made out of single-wall cardboard changed how Benjamin could dine out with his family in restaurants. Positioning the phone at an angle so that he could watch a video or play a game without someone holding it for him made a huge difference — and Benjamin’s family wanted to share the device with as many parents as possible.

Photo: smartphone easel display

Benjamin’s next request was for a freestanding chair, tray, and reading easel for his class at church. At ADA we easily have 10 or more pairs of hands involved in the creation of every adaptation and none of our adaptations would be possible without the help of our interns and volunteers. In addition to Benjamin’s chair for church and his booster seat, ADA volunteers also built 7 forward tilting benches for his class, so that all the students could sit comfortably.

Photo: Staff, volunteers, interns, Benjamin and his family pose for a photo with Benjamin's new equipment.

Benjamin’s story is one of many that proves how as a community we can be there for each other. No matter where you come from or what your background is,  you can play a huge part in making it all happen.


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