The evening we got our amnio results back, I wrote a letter to my not-yet-born daughter. 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 wrote, “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?
Our community at Temple Israel of Natick was supportive even before Sofia was born, throwing a “Baby Seder” with prayers and offerings of future support for our family and children. We celebrated her simchat bat there, and had a second simchat bat at MetroWest Jewish Day School (MWJDS), the day school our boys attended.
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, joining the class for Judaics, music, art and gym. The girls in that class continue to be her friends to this day.
In fourth and fifth grade, Sofia joined the Temple Israel religious school twice a week. I worked with the staff to create an alternate curriculum that Sofia could use when her classmates were doing something that she would not be able to access. 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 one-on-one with her wonderful teacher. 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).
In sixth grade, the opportunity arose for Sofia to participate in a Gateways-sponsored class nearby. Gateways: Access to Jewish Education provides services to promote the meaningful inclusion of individuals of all abilities in Jewish life. Their regular program was too far away for us to participate in, but they helped formulate the strategy for her partial inclusion at MWJDS in the early years.
The CHESED program (Community Hebrew Special Education) was held at a nearby Conservative synagogue. Sofia was the only bat mitzvah student on Tuesday afternoons. On Sunday mornings, she attended the CHESED program with two other boys; neither are her age and neither provided any social interaction for her. But with only three kids in class, the teacher was able to present Jewish topics in creative ways that allowed her to learn.
I worked with the teacher, along with our cantor, 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. We fine-tuned a potential list of prayers for Sofia to study, prioritizing them: 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 and it would be nice if she could lead kiddush, etc.
Sofia’s bat mitzvah would be Parasha Bereshit on Oct. 6, 2018, in Sofia’s seventh-grade year, which happened to be the Saturday of Columbus Day weekend and 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.
At CHESED, Sofia and her teacher created seven large murals, depicting the seven days of creation. We settled on the text of בְּרֵאשִׁית “In The Beginning” (adapted by Alison Greengard and illustrated by Carol Racklin-Siegel), a children’s book adaptation of the first creation story in the Torah. I made a few edits to the text, adding gender-neutral language and removing 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, 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!
Sofia is blessed with many friends. The teachers in public school identified nearly 20 kids, plus friends from MWJDS, kids in her SubSperate class, the gang from Special Olympics gymnastics, a miscellaneous collection of other buddies with Down syndrome and the entire religious school class.
The multiple bright colors of the invitation seemed very well-suited to represent Sofia. We included this quote:
חָבִיב אָדָם שֶׁנִּבְרָא בְצֶלֶם
“Beloved is the person, created in the image of God.”
On the back of each invitation, we invited everyone to join us the day after the bat mitzvah as part of Sofia’s team at the MDSC Buddy Walk.
The Thursday before Sofia’s bat mitzvah, we went to morning minyan and she got to have an aliyah in the smaller setting. On Friday afternoon, we took formal photos, and then Sofia led the congregation in kiddush.
Saturday morning, Sofia wore a blue lace dress with a sparkly bow in the back, delicate little braids in her hair to pull it back from her face, and her tallit that we made last year in the religious school class workshop.
Sofia wanted to sit on the bimah the entire time, even during Shacharit when the rabbi and cantor were still on the floor level. But she sat nicely, holding her favorite toy, Woody, and observing the crowd. There were tons and tons of people; three extra rows of chairs, plus standing room. We kept a watchful eye on Sofia, occasionally instructing her to stand or sit or pay attention.
We had decided at the last rehearsal that big brother Sam would hold the Torah while Sofia stayed at the amud to use the microphone and prop her book on the podium. Sofia showed no signs of nervousness as she carefully said the words, “Shema Yisrael Adonai Eloheinu Adonai Echad.” And when the congregation responded with the repetition of that phrase, a huge smile spread over her face as she realized the power she held! Sam and the rabbi transferred the Torah into her arms, and she proudly carried it through the congregation. Quickly. But she didn’t drop it, so quick was fine!
The Torah readings were great. Her girlfriends from MWJDS had volunteered to read. Our friends, from shul and from life, along with my father and I, were the other readers.
Sofia stood proudly at the amud. I had to coach her to take the corner of her tallis and kiss the Torah first, but she recited the blessing before the aliyah and waited patiently while I read, then (with more prompting about kissing the Torah first) recited the second blessing.
The rabbi and cantor recited the Misheberach blessing in English and Hebrew, and then I said a few words to Sofia and to everyone, and then my husband, David, and I read a blessing. And then they threw candy.
“Everything in God’s creation has its distinctive melody,
A rhythm and life-beat that it alone plays.
This is especially true of humanity.
Each of us has the song we sing in this world,
An evolving ballad that is uniquely his or her own.”
Sofia read her d’var slowly, clearly and proudly. We had her murals displayed in front of her while she read.
Big brother Micah chanted the Haftarah beautifully. The rabbi gave a d’var about Bereshit and people being made in God’s image, B’tzelem Elohim. Our friend who served in Afghanistan led the “Prayer for Our Country,” and other friends led the “Prayer for Israel.”
Sofia’s MWJDS classmates all joined her for Ashrei. She stood at the microphone and tried to say the words along with them (that will be what I teach her next!). It was one of the few times I got teary-eyed, seeing all of them together.
After a speedy Musaf service came the speeches. The teacher who had done the “Godly Play” with her made the presentation on behalf of the synagogue, and that brought me to tears; she and Sofia have a special rapport from their year working together. The USY presentation was by another dear family friend, sweet and poised and adorable with Sofia. It was very touching to see them together, too, because they really have a special friendship. The rabbi’s brief remarks to Sofia were equally special.
Sofia stayed firmly and defiantly at the amud, between the rabbi and the cantor, looking like the “Fearless Girl Statue” in New York City for the rest of the service. Sofia loved leading Adon Olam, and then her cousin joined her for kiddush. When her cousin reached for the kiddush cup, Sofia smoothly grabbed it out of her hands! They recited kiddush together, and Sofia loudly recited “al netilat yadaim” and hamotzi.
We rented long tables and turned the social hall into some sort of fancy beer hall (minus the beer), as we tried to seat more than 300 people. We were very fortunate that the weather was lovely, so we also had round tables set up in the courtyard for overflow. It took people a long time to get through the buffet, even with eight lines. The food was delicious.
We went back to shul in the evening for Havdalah, dinner and dancing. Right after Havdalah, we started the horah. Sofia was so excited to be the center—literally. She would not let any of us dance with her. Instead, she just stood in the center of the many circles, enjoying the feel of everyone dancing around her. And when it was time for the chair lifting, she was overjoyed.
I had told the DJ company “no light show” so they did not bring any colored or flashing lights. It was a good decision; the natural lighting of the room—either dimmed for quieter times or full strength for wild dancing—was much more sensory-friendly. We had a whole table of parents sitting near the kids, and I was overjoyed to have my “Down syndrome mom friends” with me. The kids were all amazing. The various groups (school, shul, MWJDS, specials) overlapped and got along so well. Everyone was super sweet. Sofia’s school friends were very attentive to her, and everyone danced.
And she looked gorgeous. Sweet and lovely, with the fancy dress we’d gotten nearly a year ago, and the fun blinged-out sneakers. The only grumpy moment was when she got hungry, but I got her some chips and she was fine.
It was just simply perfect. Sweet and fun and amazing.
We weren’t done yet! On Sunday morning, about 30 of us met up in Wakefield, along with a few thousand other people, for the annual Buddy Walk. We were exhausted, but so happy to have one more day celebrating that extra chromosome.
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