Leah Sachs sits with her mother at their dining room table, proudly showing off her bat mitzvah workbook, and opens to a printout of her Torah portion. The typeface is a bit bigger than normal, but it’s all there, and Leah doesn’t need a second prompting to practice, launching into a spirited Hebrew recitation of Pekudei from the Book of Exodus.
“These are the numbers of the Mishkan, the Mishkan of the Testimony, which were counted at Moses’ command; [this was] the work of the Levites under the direction of Itamar, the son of Aaron the Kohen…”
More than a month out from her big day, she’s got this thing down.
Thirteen years earlier, her mother, Heather, wasn’t sure that day would come. She was sitting in that same dining room with Rabbi Stuart Weinblatt of Congregation B’nai Tzedek, having given birth to Leah days earlier. But Leah hadn’t come home with her; she was still at the hospital, where doctors were monitoring some heart problems. She’d also been diagnosed with Down Syndrome.
Heather was blindsided, doctors hadn’t been able to diagnose the condition prenatally. But late that evening, Weinblatt was there to offer comfort and reassurance.
“He said to me, ‘You have a place here, and she will have a bat mitzvah if you want her to. We will make it happen.”
On March 9, that day will arrive.
“The rabbi will call my Hebrew name, my sister will sing with me and the rabbi, and my brother will do the haftorah,” Leah says excitedly. “I’m doing prayers and the Torah portion and a d’var Torah. It’s about a girl who died in the Holocaust.”
Leah says she’s nervous and excited, but the excitement is palpable. She loves cheerleading, so—naturally—that will be the theme of the party. She lights up when talking about the guest list: friends, family and especially au pairs (one flying in from Colombia, another from Germany, and her current au pair, who’s been with the family for two years.)
And if she gets nervous during the service, she has a plan.
“I’ll stand, like, really high on the bimah with the rabbi,” Leah says. “And he’s gonna say a prayer and hug me.”
‘She believes in me’
If a bat mitzvah is fundamentally about transformation, Leah’s is as transformative as it gets.
Just by her presence and enthusiasm for learning, she’s changed the entire B’nai Tzedek synagogue. Weinblatt says that before she was born, the synagogue’s experience with special needs children was limited. Today, it has an inclusivity committee and offers additional religious school help for kids who need it.
Those improvements were largely spearheaded by Heather. An entertainment lawyer at the time of Leah’s birth, she dove headfirst into volunteer work on behalf of Down Syndrome advocacy groups and started the synagogue’s committee with a friend whose child is on the Autism spectrum. Then, a few years later, she began a whole new career path, taking a job lobbying lawmakers for the National Down Syndrome Group, a nonprofit advocacy group.
“Having a child with a disability has changed my whole perspective on life. It sounds cheesy, but it’s true,” Heather says. “What’s important and what your priorities are as a family and professionally.”
She and her husband, Andrew, were both Ivy League graduates with high-powered jobs in Washington. In short, Heather says, aspirations and expectations for their three children (Leah has an older brother named Jonah and a younger sister named Talia) have always been high.
“Having a child with an intellectual disability was particularly difficult at first,” Heather says. “But I pretty quickly came to realize that the most important thing is not necessarily success in the way it’s traditionally defined, but being a good person, contributing to the community. Time and time again, she’s surprised me and surpassed any type of limitations I’ve even put on her.”
When it came time to really dig into her bat mitzvah preparations, the family got creative. Heather and the synagogue’s inclusivity committee got donations from congregants to bring Sunday school classroom aides in for children with special needs, and Leah was progressing with her Hebrew. She’d also developed a close bond with a religious school teacher, Renee Young.
Despite having no formal training in special needs education, Young clicked with her pupil and took on the role of bat mitzvah tutor with the help of the synagogue’s cantor. She’d bring in wax sticks to help Leah learn the Hebrew letters, pin words to a billboard and have Leah go and grab them, always keeping her engaged.
Leah beams about Young.
“She’s so active, and all my Torah portion and speeches are really big. She helps me,” Leah says. “And she believes in me.”
Celebrating as a congregation
When it came time to finally pick a date, though, Heather still wasn’t sure a Saturday morning service would be best. So she signed Leah up for a calmer Havdalah service instead. Soon after, she got a call. It was Weinblatt.
“He said, ‘Are you kidding? We want to celebrate as a congregation. We want her to participate in a Saturday morning service, and we’ll do whatever it takes to make it happen.’ So I said, ‘OK.’”
According to Heather, the kind of support and accommodation B’nai Tzedek provided is not necessarily the norm at synagogues. Through her volunteer work with the Jewish Federation of Greater Washington, she knows things are improving, but there’s a lot of room to be more inclusive.
She knows families who left synagogues because they didn’t feel welcome, all while Leah and her family felt perfectly at home in theirs.
“It can be something like having a child with Autism who might sit in Saturday morning service flapping, and that’s just a way to calm themselves down or even express joy at the music, but parents are getting dirty looks from other congregants or even by the rabbi,” Heather says. “It just makes you feel like you don’t even want to take your family in the door there.”
Nonetheless, Heather says that if parents want their child to have a Jewish education and to celebrate big milestones like a bat or bar mitzvah, they shouldn’t be scared.
“I hope parents will take that leap of faith and reach out to their clergy or the Federation and see how they can make it happen,” she says.
Leah’s memorized some of her Torah portion, but she can read Hebrew, Heather says. After she gets through practicing for the night — having seamlessly recited her Torah portion — her mother wants to make sure she understands what she’s saying.
“What’s the message?” Heather asks. “That God…”
“Is always with me,” Leah responds.