If I close my eyes and sit quietly, I can still picture the expression on her face. My breath catches in my throat. I remember the tiny sob that escaped as I tried to say, “Amen.”
Two weeks ago, I experienced a spiritually charged moment in synagogue. In my experience, that’s pretty rare. Like many people I know, I enjoy the social aspect of attending synagogue and endure the lengthy services and sermons. I feel closer to God in silent mediation.
However, on the morning of Dalia’s Bat Mitzvah, every word of the morning prayers seemed to be infused with divine energy. Dalia has autism and is non-verbal; she cannot communicate with words what this moment meant to her. Still, her excitement was palpable throughout the service. It was unlike any Bat Mitzvah and just like every Bat Mitzvah I’ve attended, only more so: more joy, more crying, more coming together as one community.
Dalia’s mother, Rebecca, and I forged a friendship when she approached me more than a year ago. She thought my input both as a mother and rabbi would help her as she designed a ceremony that would accommodate her daughter’s special needs. I’ll never forget our first lunch meeting; Rebecca brought a legal pad filled with notes and questions that she had essentially already answered. I reassured her that she knew, better than anyone, what Dalia could learn and achieve.
Two weeks ago, after countless hours of preparation and endless attention to detail, including several rehearsals, Dalia showed just what she was capable of doing. Using her communication device that was programmed with visual supports/prayers from Gateways’ resources and wired to the synagogue’s sound system, Dalia sang the blessings before and after she signed the Shema as her Torah reading: “Praised are you, God, Giver of the Torah.” The congregation of more than 150 honored guests answered, “Amen.”
As a mother, I know what this rite of passage meant to Rebecca. We both want our children to feel they have a place in the synagogue and in the Jewish community. As a teacher, I share Rebecca’s belief that “kids with autism are so capable, it just takes time and patience to help them succeed in their own way.” Each of us strives to fulfill the biblical instruction, “Teach a child according to her path; she will not swerve from it even in old age.” (Proverbs 22:6)
One reason Rebecca encouraged media coverage of Dalia’s Bat Mitzvah is she hopes that parents of children with autism who Google “autism” and “bat mitzvah” will see Dalia, will see what can be possible for their children to accomplish.
I also have hopes. I hope to see Dalia, and other kids with autism, in our synagogues all the time. I hope to see articles about their b’nai mitzvah in my Facebook newsfeed all year, not only during Jewish Disability Awareness Month. I hope to experience more joy, and more crying, as each child finds his or her path to Torah.
Sometimes the most challenging part of being a committed Reform Jew is seeking ways to incorporate Judaism into our home life in ways that are meaningful. Complicating matters for our family is that our oldest child, Ben, is on the autism spectrum. And so incorporating anything into our regular routine can prove to be challenging for one who thrives on consistency.
Shavuot, which begins at sundown this evening, has always gotten the short end of the stick in our household. Although it is one of the three major festivals on the Jewish calendar, it has been the hardest to observe with our kids. Reform communities tend to have the main celebration during the evening service at the beginning of the holiday. But for families with young children, and those with family members who go to bed very early, evening observances are often out of the realm of reason. Not because the family is not committed to observing the holiday, but because it is simply not possible given the current circumstances. And that is certainly the case in our home.
So while I, as an adult, crave the spiritual and intellectual experiences that Shavuot has the potential to give me, my children need something different. And I, as the parent, am charged with creating a Shavuot observance that will inspire them and become part of our family’s story.
It takes a different shape each year as the needs and developmental stages of our kids shift. There is, however, one constant; ice cream.
The tradition to serve dairy foods on Shavuot is long-standing and has several explanations for its origin. Whatever the reason, it became clear to me that a great way to connect my kids to this tradition was to serve ice cream. One year it was an ice cream cake in the shape (sort-of) of a Torah. That happened once and only once. Over time, it has become our tradition to have a sundae bar for dinner. With crudités, cheese, and crackers as a forshpeis. Sparkling limeade and a fancy table set with flowers and crystal send the message that it is a night unlike other nights. By candlelight, God-willing, our conversation will include discussions of Torah, ancient and modern. Suggestions of how we might still hear God speaking to and through us will be shared. And in the morning, a breakfast of milk (still with the dairy theme) and Entenmann’s Rich Frosted Donuts. Because I ate them for the first time at my very first all-night Shavuot study session as a kid. Because they were a favourite of my grandmother, z”l, and it keeps her memory alive for my children. Because the study of Torah is never-ending.
Traditional? Not in the normative sense. But it is our family’s tradition. While they are young. And when they are ready for a more conventional observance, that is what we will do. Though I suspect ice cream will still be involved.
When selecting a name for our youngest child, I was campaigning hard for “Jedediah” should the baby be a boy. The diminutive form, “Jed,” sounds so strong and I was taken by meaning of this name, “God’s beloved.” It seemed to be a wonderful name to bestow upon a child. But, like with so many things, my husband provided the voice of common sense and gently persuaded me to rethink my choice. “Though the Hebrew “Yedidyah” sounds beautiful, “Jedediah” might make things a bit rough on the playground.” And so, our third child carries the name “Jacob.”
It is a beautiful name. And one that he wears well. He is a Jacob. Never Jack nor Jake. Only his sister, and only on the rarest of occasions, may call him “Jakey.” His nickname, Koby (from Yaakov), is one that he accepts only from family members. Jacob wears his name so well that it seems ridiculous that we ever considered anything else.
Jacob is the youngest of three children. Lillian, the aforementioned sister, is our proverbial middle child. And Benjamin is our first-born. Benjamin, however, is not like other first-borns. He has Asperger’s Disorder — a high-functioning form of autism. It is a condition that radically affects the family dynamics.
In this week’s Torah portion, Parashat Toldot, Rebekah seeks an answer as to why her pregnancy is so difficult. God responds,
“Two nations are in your womb,
Two separate peoples shall issue from your body;
One people shall be mightier than the other,
And the older shall serve the younger.”
And the older shall serve the younger.
How many times had I read that passage without making the connection.
There are things that at five years of age Jacob can do and accomplish that Benjamin, at twelve, cannot do or has only just learned. Watching Jacob move easily from each newly-acquired skill to the next, we catch glimpses of his older versions. The day will come when Jacob will surpass Benjamin socially and otherwise. It is a day that is anticipated with both pride and sadness.
As parents, we must constantly remind ourselves to regard each of our children independently. Benjamin, Lillian, and Jacob have their own strengths and weaknesses. They have interests, both shared and separate. It is difficult — painful, even — to see Benjamin lag behind his siblings. Yet, to wish that Jacob will always remain behind his brother is unrealistic and unfair. And so we celebrate Jacob’s development even as he bypasses Benjamin’s abilities. It is bittersweet.
But bypassing and surpassing are not the same as supplanting. Jacob’s name means “to supplant” and there are times it seems as though his “normalcy” will jettison him into the role of older brother. But we cannot neglect the meaning of Benjamin’s name: “son of my right [hand].” Benjamin, my sweet Benjamin, is my first-born. It is by him that I became a parent. It is through him that I learned to see the world with new eyes. Though our lives are challenged in countless ways by his autism, he cannot be replaced as the child of my soul.
Our matriarch, Rebekah, put so much stock into the phrase …the older shall serve the younger that she forgot one of the cardinal rules of motherhood; no one can truly take the place of one’s first born child. At least, no one should.