by Julie Wolf, JFN Newsletter Editor
Francine Ferraro Rothkopf wears many hats: mother, wife, writer, blogger, cantorial soloist, bar and bat mitzvah tutor. Francine has strong ties to many communities as well: religious (Temple Israel), school (MetroWest Jewish Day School and Ashland Public Schools), and virtual (the Internet world of “Special Needs Mommies,” as she calls it). A longtime resident of the Metrowest area, Francine and her husband, David, live in Ashland with their three children, Samuel (12), Micah (almost 10), and Sofia (6 1/2), who has Trisomy 21, more commonly known as Down syndrome. In this interview, Francine talks about the value of community in her family’s life, and how enriching it has been in her own.
Your maiden name is Ferraro — not exactly a common Jewish last name. Were you born Jewish, or are you a Jew by choice? Families have changed so much now, through interfaith marriage, adoption, and so on, but once upon a time, the Jewish family was, for lack of a better term, “just Jewish.”
This is one of those weird family stories: I have a picture of my paternal grandparents on their first date. On the back is written “The Future Mr. & Mrs. Langer.” It wasn’t until they had dated for a full year that my grandmother found out Grandpa’s last name was really Ferraro! Having grown up in the Garment District in New York, Grandpa spoke better Yiddish than most people, and could “pass” well enough for the times, and he’d really wanted to date her. Of course, once it was discovered that he was not actually Jewish, there was upheaval on both sides. … My great-grandparents stopped being observant once my grandparents married, and it wasn’t until my father explored his own intellectual curiosity of Judaism, and later married my mother, from a traditional Jewish home, that we brought Judaism back solidly into the family.
My parents were very committed to their involvement in our small synagogue in Bristol, Conn., and I think that is where I began to develop my obsession with community. But for sure, having a last name like “Ferraro” was always amusing, especially on synagogue and USY letterhead. (My sister and I both served on USY Regional Board.)
Your daughter, Sofia, was born with Trisomy 21, or Down syndrome. As the mother of a child with Trisomy 21, what have you found to be some of the misconceptions about the syndrome?
… Down syndrome affects people of all ages, races, and economic levels. Although a woman’s chances of having a child with DS increase after age 35, more live births of children with DS are to younger women, because older women are more likely to have prenatal testing, and more likely to abort. Approximately 92 percent of prenatal diagnoses of Down syndrome are aborted.
That last sentence gets to the heart of problem. OB/GYNs still present a diagnosis of Down syndrome as a terrible tragedy, and are not always quick to provide accurate, up-to-date information. The diagnosis is no longer terrible. I acknowledge that, had I been born with that extra chromosome back in the mid-1960s, I probably would have been put in an institution. But the world Sofia and her peers face is so vastly different. With preventative medical treatments (children with DS faced increased risk of cardiac issues, childhood leukemia, thyroid problems, hearing or vision loss, skeletal problems, and a few other issues), people with Down syndrome are able to live healthier, longer lives. With the developmental and academic supports, such as those provided by Early Intervention and Special Education services, they are able to accomplish amazing things. Early support (EI showed up in our home when Sofia was only three weeks old!) is key. Think about how much a typical baby grows and learns in the first few years; children with the developmental delays associated with the extra chromosome need extra help to achieve those milestones. …
There are still plenty of misconceptions: “All people with Down syndrome are so sweet and happy” (yeah, you try reasoning with my daughter when she doesn’t want to do something!); “They never learn to do anything” (people with Down syndrome now hold jobs and live independently); “You must be a special family to be ‘given’ such a special child” (well, we do feel blessed to have Sofia in our lives, but we are not “special”!).
The world of Special Needs Mommies on the Internet is bursting with love and support and cheer. I have friends now from all over the world; on our recent trip to Israel we were able to visit with friends there. I hear about the struggles friends go through in other states and realize we are very lucky to live in Massachusetts, where both the medical care and the education are available. My “DS Mommies,” both near and far, are a terrific resource for parenting Sofia.
A few years back, you contributed to a book called “Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives,” and on your blog you write, “Sofia and I submitted a chapter about the gift of community, of course.” I was struck by two things about this sentence: one, I love the fact that you credit Sofia with being your co-author, and two, the addition of “of course” is telling. How did you get the chance to participate in this project, and was writing about community your idea?
The project was so exciting. When I first got my prenatal diagnosis, I became an active lurker on the T21Online message forum (which has since melted away; most of us are on Facebook now). One of the mothers, a gifted writer from Utah, had the idea to do this book. She presented us with several über-topics: The Gift of Respect; The Gift of Strength; The Gift of Delight; The Gift of Perspective; The Gift of Love.
For me, Love was clear. My essay is about how the folks in our community and family embraced us when we announced Sofia’s diagnosis prenatally. Our wonderful friends from Temple Israel threw us a “baby seder” before Sofia was born, and people from the shul and the day school cooked us so many meals once she arrived, I think it was three months before I had to cook again! We felt so loved and protected within our community, and we were—and still are—so grateful for how everyone has taken part in raising Sofia.
A candid question: Do your sons ever feel that Sofia overshadows them or takes more of your time and energy than they would like? I have three children myself, and the dynamics aren’t always easy, if for no other reason than the parents are outnumbered. In your family, there are issues that most families don’t face. How does this affect your sons?
Certainly Sofia takes a lot of my time and attention. It’s easier now that she’s a “big girl.” but when your baby doesn’t walk independently until months after her second birthday, there are simply more things that require your assistance. It was like having a baby for three times as long as usual. But the boys learned to be active participants in raising Sofia. Micah, especially, is her companion and teacher. He coaches her on speech, he shows her how to do things, he guides her in learning self-help skills. Sam is more the one she turns to for comfort and fun; I frequently find them building elaborate forts in my living room.
[That] was my parents’ big worry when we told them Sofia would have Down syndrome: “How will this affect the boys?” But kids who grow up with a sibling with special needs have more of a chance to develop qualities such as patience, kindness, supportiveness, acceptance of differences, compassion, helpfulness, empathy, dependability, and loyalty. That seemed like a pretty good “gift” to give them!