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Winning The Title

Winning The Title

Editor's Note: As we close out National Down Syndrome Month, we wanted to share another important voice focusing on living with Down Syndrome.

At 2 lbs 3 oz, Ilyse had already acquired the name "wild woman." Born prematurely with Down Syndrome, Ilyse showed spunk and grit and the intensive care unit nurses acknowledged this with a nickname. Later, as a competitor in Special Olympics, Ilyse's uncanny ability to capture the limelight led to her being called "Hollywood". But the honorific that has had the greatest transformative effect on Ilyse is that of "Auntie."

At the age of nineteen, Ilyse drove with my parents overnight to meet their new granddaughter. For Ilyse and my infant daughter Miriam it was love at first sight. Ilyse felt a new sense of pride in her status as an Aunt. Here was a little being she could cuddle, care for, and, as she informed us immediately, someone who she could "feed chocolate milk."

Ilyse was always the baby of the family. She is thirteen years younger than me, and eleven years younger than our cousins. To add to that, at four feet tall, Ilyse has always looked young. My mom often says that Ilyse's cuteness is both a blessing and a curse. A blessing because people are mostly kind to her; a curse when peers and adults who want to offer help derail our family's attempt to encourage Ilyse towards independence. But a baby niece and a sleep-deprived sister who is now a new mom genuinely need help. And Ilyse was happy to support me in the wonder of caring for an infant.

Ilyse's repertoire of children's songs came in handy when comforting a fussy baby and even more so now that Miriam is a toddler. Finally, we reaped the benefits of all those years of listening to Rafi and Barney in the car; Ilyse did this well into her tweens, as is common for people with Down Syndrome.

Ilyse attends a wonderful boarding school for people with special needs called Berkshire Hills Music Academy. There, her love of music is fostered and translated into a means of learning new skills like teamwork, clear pronunciation and stage presence. The school has unlocked pathways for Ilyse to bond with Miriam, accelerating Ilyse's sense of agency in the relationship. Ilyse decided to learn the musical number "Impossible" with the support of her vocal coach to surprise Miriam, who took a liking to Cinderella last year.

Mondays we Skype with Ilyse when I get home from work. Ilyse often calls me every night of the week to remind me and reconfirm our Skype date. It's a highlight of her week and of Miriam's. Ilyse has an amazing sense of humor and she is playful with Miriam, making funny faces or laughing at Miriam’s toddler humor. Ilyse is unrushed in her approach to the world. She doesn’t relate to time in the way adults do. This patience comes across as an ease that is utterly relaxing for a child who wants to play pretend tea party and dress-up even as bedtime approaches.

Ilyse's maturation has been astounding in the nearly three years since Miriam was born. Just as her niece grows each year, Ilyse is growing and maturing, too. People with Down Syndrome develop at a different rate than typical adults. Though their learning and maturation may not occur at a steep climb when they are children; they also don't plateau in their growth the way others might in adulthood.

We have always judged Ilyse not based on any predetermined spectrum of achievements but solely as her own person growing at her own pace. When Miriam surpasses Ilyse in certain milestones, it has thrown into relief their differences. Ilyse's fine motor skills are weak. She worked hard with an occupational therapist to develop the strength to open a packet of chips on her own; mastering the task by age seventeen.

The first time Miriam opened a packet of chips on her own at age 2 and a half, I almost cried. On the other hand, there’s a kind of beautiful symbiosis in the way Ilyse and Miriam are challenging each other. As a child, Ilyse struggled with how to initiate imaginative play with peers. When Ilyse visits her niece, Miriam immediately launches into entire scenarios for the two of them to act out and Ilyse happily obliges and encourages the process. They are a perfect match.

Seeing my sister develop as an aunt has reminded me of how much more we can all learn and grow in the future. Being an Auntie is a title that lasts a lifetime.

Becky Voorwinde is the proud sister of Ilyse Ross. Becky is Co-Director of the Bronfman Youth Fellowships, a pluralistic Jewish leadership program for Israelis and Americans. She serves on the board of JPro and on UJA-NY's Engaging Interfaith Families committee.

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