In The Beginning
The evening we got our amnio results back, I wrote a letter to my not-yet-born daughter. In the letter I wrote that I was only worried about a couple of things. Her health was a concern, but I was hopeful, and we have been fortunate in her good health to this day. And then I said “I worry about your Jewish education. How do I make sure that you feel the joy that the rest of us do about Judaism?”
Inculcating a love of Judaism has been a key goal in my parenting journey. I want all of my children to love being Jewish, to be knowledgeable about our history and about our practices. Why should my daughter’s knowledge and love be any less important than that of her brothers?
I was already a member of Temple Israel of Natick before I even met David, and I was fortunate that he felt comfortable there also. Our boys both attended nursery school at TI. When we let our community know that our third child would have “a little something extra” (an extra 21st chromosome, in fact), members of the community threw us a Baby Seder, with prayers and offerings of future support for our family and children. Once Sofia was born, we were overjoyed to celebrate her Simchat Bat (naming ceremony) at Temple Israel also.
Meanwhile, as our boys grew, we were also involved in helping to start a Jewish Day School in our community (because otherwise the closest day school was an hour away!). Sam was in kindergarten at MWJDS (MetroWest Jewish Day School) when Sofia was born, and Micah joined him a few years later. And the Head of School even had a grown son with Down syndrome. When I told her about our amnio results, I let her know she had five years or so get the school ready for our daughter.
School: Jewish and Public
Well, of course not every parenting plan works out the way you expect. Sofia did not attend nursery school at our shul, because the program just did not offer all of the therapeutic extras she needed, while the public school’s preschool could provide things like speech, occupational and physical therapies. But she came with us to Shabbat morning services regularly, and enjoyed participating in the programs for children and families.
When it came time for kindergarten, it was clear our day school, MWJDS, would not have everything she needed, either. But what they did have was the Judaics program. So we worked out a creative compromise. Sofia attended the public school, but for the first three years, from kindergarten through second grade, she was also a part-time student at MWJDS. Twice a week she would leave school at noon to head to the day school, to be part of the Se’orah* class for Judaics, music, art and gym. The girls in the Se’orah class continue to be her friends to this day. (*At MWJDS, each class takes the name of one of the seven species of fruits mentioned in the Torah, and that name stays with them from kindergarten through graduation after 8th grade.)
In third grade, Sofia moved to the upper elementary school, and the typical curriculum at both schools became too difficult for her to access. We spent the year working on her mastery of English reading, writing and speaking. In fourth and fifth grade, Sofia joined the Temple Israel Religious School on Sunday mornings and Wednesday afternoons. I worked with the staff to create an alternate curriculum which Sofia could work on when her classmates were doing something that she would not be able to do. In fourth grade it worked fine, but in fifth grade, as the typical curriculum was even more text-based, Sofia spent most of her time in the chapel, working 1:1 with her wonderful teacher, “Hamorah Margalit” (Hamorah means “The Teacher” in Hebrew). They did a lot of “Godly Play”, an approach that helps children to explore their faith through story, to gain religious language and to enhance their spiritual experience though wonder and play. They also began practicing some of the prayers and rituals Sofia would need to know for her bat mitzvah.
Meanwhile, our family continued to attend Shabbat and holiday services regularly, and enjoyed many Shabbat meals with friends. Sofia learned the basics of the Friday night dinner table seder (kiddush, washing hands and motzi) by rote and loved being the Shabbat Princess (based on one of her favorite storybooks).
Special - and Jewish - Education
In sixth grade, the opportunity arose for Sofia to participate in a Gateways-style class nearby. Gateways: Access to Jewish Education provides services to promote the meaningful inclusion of individuals of all abilities in Jewish life. But I had always harbored some resentment for the idea of sending Sofia to Gateways, since it was a long drive and had been explained to me early on as being “for kids who can’t be serviced in their home community.” I wanted Sofia to be able to learn in her own community; to have local friends who she would see not just in class but in her regular life, going to shul and having fun together.
The CHESED program (Community Hebrew Special Education) was held at the nearby Framingham Conservative synagogue, Temple Beth Sholom. We thought that there would be two b’nei mitzvah students in that first year, Sofia and another girl with Down syndrome, but the other girl ended up not participating, and Sofia was the only bat mitzvah student on Tuesday afternoons. On Sunday mornings she attended the CHESED program with two other boys (both of whom are also TI members); neither are her age and neither provided any social interaction for Sofia. But with only three kids in class, the teacher (my colleague at MWJDS, Hamorah Amy) was able to present Jewish topics in creative ways that allowed Sofia to learn.
Planning a Bat Mitzvah
I worked with Hamorah Amy and her team, along with Cantor Ken from TI, to design materials that Sofia would use for her bat mitzvah. The siddur was based on the Gateways model, but we offered Sofia the particular prayers that would be most appropriate for our service at Temple Israel. Cantor Ken, Rabbi Liben and I fine-tuned a potential list of prayers for Sofia to study. We put things in order: she absolutely HAD to learn the blessings for the aliyah, it would be great if she could do the Shema/Echad/Gadlu sequence for taking out the Torah, it would be nice if she could lead kiddush, etc.
We had selected Sofia’s bat mitzvah date back at the end of fourth grade (which is when we get our dates at TI). Although her birthday is in February, we decided to have her bat mitzvah the following school year, so that she would be with her religious school classmates for the b’nei mitzvah year. We selected Parashat Bereshit, the very beginning of the Torah, for a couple of reasons. I felt that Sofia would be able to understand Chapter 1’s version of the creation story, in which God creates the world in six days, making order from chaos, and then rests on the seventh day, Shabbat.
The parasha would fall on October 6 in 2018, Sofia’s seventh grade year. Which happened to be the Saturday of Columbus Day weekend. And also the day before the MDSC Buddy Walk! It seemed like it would be a perfect time for out-of-town guests to come to New England, enjoy the fall foliage, and join us at the Buddy Walk as Sofia’s mitzvah project.
Details
The last few months of the spring, with Hamorah Amy out sick, the Temple Beth Sholom religious school director, Geri, took over working with Sofia. Together, they created seven large murals, depicting the seven days of creation. Geri and I settled on the text of בְּרֵאשִׁית In The Beginning, adapted by Alison Greengard, illustrated by Carol Racklin-Siegel, a children’s book adaptation of the Torah, Genesis chapter 1 and the very beginning of chapter 2. I made a few edits to the text, to add gender neutral language and remove some words that were more challenging for Sofia to read.
Over the summer, Sofia and I practiced and practiced. We narrowed her parts down to:
Friday night Kiddush (which she mostly knew by heart, but I added a print version), the Shema/Echad/Gadlu sequence for taking out the Torah, the blessings before and after the aliyah, the adapted English text about the seven days of creation (which would be her d’var Torah speech), the Shabbat morning kiddush, and the al netilat yadaim and hamotzi blessings. Sofia practiced nearly every single evening from July through September!
In mid-September, we added a new tool: a Torah pointer yad. Sofia was becoming increasingly comfortable doing each piece on her own, and would wave me off, saying “I do it!”, but she refused to use her finger to follow along in the text. When I gave her the yad, however, she loved it, and used it for both the English and the (transliterated) Hebrew.
What about Friends?
It turns out Sofia is a bit of a Queen Bee in seventh grade at the public school. She has a coterie of girls - and boys - who hang out with her for lunch, recess, and any other opportunity, basking in her sassiness and following her every command. At the end of sixth grade, since the public school could not (by their privacy rules) let me know the names of any of these kids, I wrote an open letter to the parents, saying basically “your kid plays with mine and we would love to invite him/her to the bat mitzvah, so please contact me with your address.” The teachers identified nearly 20 kids who merited these letters, and all the parents were eager to send me their child’s address!
Aside from the public school gang, and the girls from the Se’orah class at MWJDS, and the kids in the SubSeparate class, and the gang from Special Olympics gymnastics, and a miscellaneous collection of other buddies with Down syndrome, we also invited the entire Gesher class, the religious school kids now in their b’nei mitzvah year. Being part of the Gesher class means two things: being part of the class gift (a special chanukiyah for each kid, thereby removing the need to get a different gift for each kid) and being invited to all the b’nei mitzvah parties when possible.
The Invitation
Because I’m an uber-geek when it comes to this stuff, of course I designed the invitation myself. For each of my kids, I wanted to include a Hebrew quote, and for Sofia, the one that seemed best was:
חָבִיב אָדָם שֶׁנִּבְרָא בְצֶלֶם.
Beloved is the person, created in the image of God.
The multiple bright colors of the invitation seemed very well-suited to represent Sofia. Add an elegant script (in purple, of course). On the back of each invitation, we invited everyone to join us the day after the bat mitzvah as part of Sofia’s Bat Mitzvah Team at the MDSC Buddy Walk.
As part of the invitation, I included a card to all the kids:
Dear Parents,
You know your child best. If you feel that he or she would benefit from having a caretaker present at the party, by all means please join us! Please let us know who will be attending with your child, and whether that person should sit with the children or at a grown-up table nearby.
(Read about the actual day of the bat mitzvah here in my previous blog post.)
x
Between all the family, our work colleagues, Sofia’s friends and our friends, we sent out over 200 invitations! We discovered that many people are REALLY bad at RSVPing on time, but eventually we accounted for nearly everyone - and lots and lots of people planned to attend!
Thursday, October 4, 2018: The Practice Minyan
Since David has been going to morning minyan this year to say kaddish for his father, he wanted us to all go on Thursday morning so Sofia could have a “practice” run. It was great. She would not cooperate and sit in a chair, just sat on the floor tossing Woody, but when it was time to take out the Torah, she jumped right up. The chapel is small, there were only about a dozen other people besides us, so it wasn’t too crowded, and Sofia made sure she went around the table to everyone could reach the Torah. Her tallis was a bit lopsided, so she nearly tripped!
Sofia’s brother, Micah, was the Gabbai Sheini that morning, and he may have been even more proud than his parents as he watched his sister have her aliyah.
Sofia recited the blessings perfectly. She was beaming with pride when she was done. And she got to carry the Torah again at the end.
Friday, October 5, 2018
The five of us (Sam came home from college on Thursday night) gathered at the synagogue on Friday at 4pm to take photos. The Rabbi and the Cantor joined us for some pictures, and Sofia and I managed a couple of dress changes so we could get formals in our party dresses as well as our morning dresses (and my Friday night dress). Sofia looked so lovely with her hair curled and a little makeup to bring out her lovely features.
Between photos and services, David and Micah raced to the mall to get some watch batteries (for me and for Micah) while Sam and I set the tables for our dinner, which was after services. Sofia played with Woody and relaxed for a bit.
There were not too many people at services on Friday night. Many of our guest who were driving in were very late due to a big traffic jam on the Mass Pike. We had some friends and family at a nearby hotel, some having home hospitality nearby, and some staying at our house. All in all we had about 30 guests, plus the congregation.
For services, Sofia started out sitting on the bimah, even though Cantor Ken was standing down on the floor. Eventually, Sam convinced Sofia to sit next to the Rabbi in the front row. She sat in the chair in front of me, tossing and twirling Woody. But she sat quietly.
Then it was finally time for Kiddush. Sofia and I went up to the bimah and set up her book. I stood to her side, and chanted softly so she had a guide, but she recited the words strongly (if not always clearly) into the microphone, only smiling triumphantly when she was done.
We had a lovely Shabbat dinner. Two of my friends acted as kitchen staff so I could enjoy visiting with our guests. It was lovely to see everyone. Micah and I joined the friends table for Birkat Hamazon (I spent most of the meal at that table) and I loved every minute. Sofia ate with her cousins, and eventually ended up back on the floor, tossing Woody.
We had fun shmoozing, and finally left shul around 8:30. I was exhausted - Sam and I had been at shul all morning to set up, and I had to curl Sofia’s hair, make table cards, and finish all the last minute stuff all day - so I went to sleep early.
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