Q & A with Amy Shulman Site Coordinator for GiGi’s Playhouse Rochester

A different kind of playhouse — helping those with Down syndrome

By Mike Costanza


Chicago-based GiGi’s Playhouse helps those who have been diagnosed with Down syndrome and their families cope with the syndrome’s effects. Amy Shulman, site coordinator for GiGi’s Playhouse Rochester, spoke to In Good Health about the nonprofit, and the services it offers locally.

Q. What is Gigi’s Playhouse?

A. We are a nonprofit Down syndrome achievement center that provides free therapeutic and purposeful programming to individuals of all ages who have Down syndrome — we call them “participants” — and their families. We have families that contact us if they end up getting a prenatal diagnosis. We start working with them at that point, and we see them throughout the participant’s life. In the Rochester Playhouse, we service over 400 families.

Q. What is Down syndrome, and what are its effects?

A. Down syndrome is a genetic disorder. The individual is born with an extra copy of the 21st chromosome, which causes them global intellectual developmental delays.

Q. Could someone with Down syndrome work as a computer programmer?

A. Absolutely they could. It would take additional effort, probably. Perhaps even assistance — an aide — or they may just need more time than the average individual to achieve whatever they’re trying to achieve. Most of our individuals probably won’t drive.

Q. How does Gigi’s Playhouse help its charges prepare for life?

A. We offer one-to-one-tutoring in speech, math and literacy for all age groups, from ages 4 on up throughout adulthood. We also offer them independent life skills and socialization programs, and the chance to work one-to-one with our speech and language pathologists.

Q. What GiGi’s programs are designed to help those who have Down syndrome improve muscle tone?

A. We have a signature program called GigiFIT for different age levels and abilities. The program is a physical therapy-based program that was scientifically designed to specifically target the low muscle tone and strengthen the muscle tone of individuals with Down syndrome. We also have some recreational programs and a gym, and we open the Playhouse on our open-play days for families.

Q. Does Gigi’s offer services for the families of those who have the syndrome?

A. We offer lots of parent support groups. They [parents] discuss everything from education to living independently, to just the daily struggles of learning, and the best ways for them [participants] to learn. We also have a group of family members who have their own children with Down syndrome who are a huge resource for us to reach out on a more personal level to families that are facing any type of need for support.

Q. How has New York state PAUSE and its restrictions affected the Gigi’s Playhouse’s operations?

A. COVID-19 hit everyone hard, and it especially hit our organization hard. We are not an essential service, unfortunately. Currently [as of mid-June], we have no in-person programing or play programs. No one comes into the premises.

Q. What has GiGi’s done to continue serving its participants?

A. Our national office in Chicago set out when the world shut down on March 13. In five days, they were able to launch all of our programs virtually on a GoToMeeting [online meeting] platform. We now offer over 250 on-demand and live programs online daily.

Q. Does GiGi’s charge for its services?

A. What we do at the playhouse is offered free. We are 100% funded by local donations, and grants from local businesses, and we are 99% run by volunteers. We only have three employees.

Q. Has the shutdown affected your fundraising programs?

A. On March 14 was supposed to be The Red Carpet Affair Gala, our largest fundraiser of the year. We had over 500 attendees registered, and we had to cancel that event.

Q. You held the Step To Accept Challenge on June 6. What was it?

A. It was a fundraiser for all 60 Playhouses and startups across the US and Mexico. It’s a virtual walk, bike and run challenge. All the Playhouses raised over $1 million through registrations and donations.

Q. Monroe County is currently in phase two of Gov. Andrew Cuomo’s plan for restarting the state’s economy. When do you think Gigi’s Playhouse will open?

A. We don’t foresee being able to reopen probably until the fall. That would be mainly because the individuals that come to our Playhouse fall under very, very, very high risk. Having Down syndrome makes them very susceptible to any illness.

For more information about GiGi’s Playhouse Rochester, go to: https://gigisplayhouse.org/rocheste