Endless Day

I think it's Wednesday, right? But didn't Wednesday start 48 hours ago? Or more?

It's been a long, slow, busy week. Let's see....

Friday evening I took Sofia and Micah and his friend to dinner with the rest of friend's family. Little crazy - restaurant was too loud and every one in our party got a bit antsy. But it was still fun, and nice to see the parents (my friends) being really goofy and happy together.

David got back from the Berkshires around 11, having brought Sam to the bat mitzvah girls' house and had dinner there. He said all the girl cousins were "flipping their hair" at Sam!

Saturday morning, I took Micah to shul, but David took Sofia to the Learning Program, a special reading program for kids with Down syndrome. He really wants her to do it, so he gets to give up shul and take her...

Afternoon, my friend and her son came for a playdate with me and Micah. Evening, I finally got to ride in the new toy (David has a "company car"...the kind of car you get if you are already married to your "trophy wife". ) David and I went to Providence, to my favorite restuarant on Atwells Ave, Potenza (ok, the name changes every time we are there, but it's Chef Walter's place). It was lovely to be out with my hubby, on a gorgeous night. We had a really nice time.

Sunday I had to leave with the kids early to go get Sam. David stayed home, because he had to leave at noon for the airport. He's back in Israel for the week. I drove out to the Berkshires, got Sam, and took the kids to the Hancock Shaker Village. It was nice. Ice cream and a bite for lunch, before heading home.

Instead of going straight home, we went directly to Chabad for a Shofar Workshop. The boys got to make their own shofars! Very cool. I spent a lot of time bouncing between the boys and Sofia, who was eating dinner in the cafe. Fortunately, I knew a lot of people there, so I could leave her under someone else's watch for a few minutes at a time.

We were all so tired when we got home that night!

Monday was a "normal" school day - I went in to Sam's class and the kindergarten in the morning. Sam had tutoring after school, so I took the others for ice cream while we waited. In the evening, Micah had his first piano lesson, with a new teacher who comes to our house. YEAH!

Tuesday morning Sofia woke at about 4am, and wandered around for a while. I finally got her back to sleep at 5am. Today she woke at 2am for a while. I am SO tired now!

Yesterday was actually sort of easier. In the morning, I had to pull Micah out for a while to go for a skin checkup. Then I had to teach first and fifth grades - both went well. And I did not have to pick up the boys, they went with the carpool. So I was able to relax a little bit. Took the kids for sushi.

Today was just endless. Like I said, woke at 2am for a while with Sofia. I think it's a combination of her belly hurts (I gave Miralax this morning; hopefully tonight will be better) and just adjusting to a long school day. I have to blow shofar every morning at school right after drop-off. Then today I had to go get the invitations for my grandmother's 100th birthday party run off. Then worked out, and then came home and fell asleep for an hour! A few more errands, including stopping at the local ballet studio....

Hopefully Sofia will be doing a special needs dance class called Perpetual Motion on Tuesday afternoons. They need 5 kids to sign up in order to have the class. So spread the word!

Picked up Sofia, raced back to the day school. Today's session with Micah's class was better, because I was stricter (so was their teacher). Also made them all afraid. I'm trying to teach them the Torah service, and I said that at the next All School Tefillah they would have to lead it. They paid attention after that!

Then I went in to the kindergarten, to do a shofar workshop with them (including Sofia! although she was so tired, she spent most of my time rolling on the floor looking at a Barbie book). I brought three of our shofars in, and let each kid try to blow them. Thank heavens for alcohol wipes! It was fun.

Raced to shul, to make sure we actually have everything reserved properly for Sam's bar mitzvah. Apparently (as I'd discovered yesterday) we did not! So I'm a little nervous. It should be ok, but we have to find out about the tent I want to put in the courtyard, which is even more necessary now that there is an aufruf (blessings before a wedding) with an equally large family that same morning. So there will be just ghastly amounts of people!

Back to get Sofia, who left kindergarten early and sat quietly in the car with me waiting for the boys. Got Sam a buzz cut (his choice) and got Sofia's bangs trimmed. Got a snack for Micah, then dropped him at his gymnastics. Then off to Sofia's gym. Sam and I tried going to the post office, but the desk at Trolley Square closes at 4:31 - and the postman there is VERY nasty - and we got stuck in bad traffic trying to get to the office on Route 30. So I will mail the invitations tomorrow :(

Got Sofia, got Micah, got home. Did not realize both my bnai mitzvah students would be showing up, but that went well. They actually prefer to work together, which is good. Then dinner for the kids, bedtime for Sofia, dinner for me, clean up, and now it's 11:15. Good Night already!

Oh, but one more thing: At the beginning of the month, I was the featured interviewee in the Jewish Family Service of MetroWest's newsletter! Here is the interview

Francine Ferraro Rothkopf:
The Gift of Community
by Julie Wolf, JFN Newsletter Editor

Synagogue, school, and Internet -- all provide Francine Ferraro Rothkopf with a sense of community that sustains her. A longtime resident of the Metrowest area, she 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.

Your maiden name is Ferraro -- not exactly a common Jewish name. Were you born Jewish, or are you a Jew by choice?

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. ...

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. ...

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.

This year Sofia is starting full-day kindergarten in Ashland, but she'll also be attending the MetroWest Jewish Day School. What were some of the special arrangements that went into enrolling Sofia at MWJDS?

I am SO excited about this! I have been involved with MWJDS from the very, very beginning, so I always knew I wanted all my children to go there. When I got my prenatal diagnosis for Sofia, I was very clear: Sofia would be attending the school when she was old enough. We had the incredible luck to have Carolyn Keller as head of school, because aside from her tremendous commitment to the school and Jewish education in general, she also has a grown son with Down syndrome. She knew firsthand what it was like to send two children to day school but have to send one to public school.

Sofia attended preschool in the Ashland public school system -- children with learning disabilities are entitled to a free public education beginning at age 3 (per IDEA, the Individuals with Disabilities Education Act). The folks in Ashland have always been aware of how much we wanted Sofia to go to MWJDS, but also of how much we want to make sure she gets all the services and supports she needs. And they have been terrific collaborators.

The idea for "partial participation" did not crystallize until this past June. Although everyone at MWJDS was committed to having Sofia become a student there, we also needed to make sure that what we did was really in Sofia's best interest. If we had to bring in all our own therapists and specialists (Sofia needs speech, occupational, and physical therapy several times per week, in addition to learning supports), the cost would be astronomical. Were I to schlep her back and forth between schools all day, she'd never have time to learn anything (and I'd be a wreck!).

So ... we developed a special curriculum [at MWJDS] for her, following the kindergarten's Judaic studies. ... [Attending two afternoons a week], she will be a full member of the kindergarten class. ... While it is too early to predict how things will develop, we are confident that this first step will be a positive one for Sofia, our school, and our community. The folks in the public school have been fantastic advocates. We are so very blessed by the whole project.

A few years back, you contributed to a book called Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives. You wrote about "The Gift of Community." What inspired you most?

... 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?

This 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!

To read more about Francine and her family's recent trip to Israel, or to learn about resources geared toward families with children with special needs, visit her blog at http://fbfrothkopf.blogspot.com/.