October is National Down Syndrome Awareness Month, and in the spirit of the time, I have been reflecting on my lovely 19-year-old daughter Ashley, and one of the most memorable days in her childhood, her bat mitzvah.
When Ashley was very young, I took her to the JCC for adaptive swim lessons. I remember there was a quote from the Talmud painted on the wall there that stated that it was a parent’s responsibility to teach a child a trade, Torah and to swim. I felt that responsibility and knew I wanted to make it all possible for Ashley, but sometimes wondered how I would, given her disability.
When Ashley entered elementary school we signed her up for Hebrew school at our temple, just like we had with her older sister and would the following year with her younger brother. Even though Ashley has Down syndrome we always treated her like our other children, making accommodations when needed. The early years of Hebrew school worked fine. Ashley loved to sing Hebrew songs and prayers, and she would sit in front of our rabbi during children’s services while he played his guitar. By second grade, it got harder for Ashley to participate and I didn’t know what to do. Luckily in a conversation with Ashley’s inclusion facilitator at school, I mentioned the problems I was having. She told me about Gateways: Access to Jewish Education, and everything fell into place.
Ashley began in the Sunday program and eventually the b’nei mitzvah class. She loved Gateways and stated that she wanted to have a bat mitzvah like her sister did. I talked with the staff at Gateways and we started on a two-year journey of her preparing for a bat mitzvah. Ashley worked very hard to learn to read Hebrew, trope and Shabbat prayers. She really learned to read Hebrew—not just rote memorization. Her tutor, Rebecca, worked with her twice a week all year-round including, summers, Sundays and some school breaks. I worked with her at home. We videotaped her, we practiced in the sanctuary for many months prior to her date, we did everything to prepare and make it a wonderful day for her. During this time, my husband went on a CJP mission to Israel. He bought Ashley and her brother (who was having his bar mitzvah six months later) tallit in Jerusalem. We were all set for her bat mitzvah.
Then five days before Ashley’s bat mitzvah on Patriot’s Day, April 15, 2013, the city of Boston experienced the Boston Marathon bombing. It was a horrific, chaotic time in our city. On Friday morning, April 19, we were awoken early by a neighbor calling, telling us to put on the news. On the day before Ashley’s bat mitzvah, our city was in lockdown. Nothing was open. We had relatives and friends trying to get in for the bat mitzvah. Our temple was closed and Friday night services were canceled. A few guests called and canceled, saying it was too dangerous to come. Having Ashley’s bat mitzvah was in question, and it was an emotional time. I will never forget telling Ashley what was happening. Her response in a sad, small voice was, “But Mom, tomorrow is my special day.” When the news broke on Friday night that the lockdown was lifted, everyone was relieved, but it was still a somber time in our area.
As our rabbi stated at Ashley’s service the next day, she was a light that shown through during a dark time. He said he couldn’t have thought of a better way to bring us out of this time and into a more hopeful place. Ashley was fantastic. She was so happy. There was not a dry eye in the sanctuary. When she was chanting, my mother’s first cousin touched my shoulder and whispered, “She’s doing it! She’s really doing it!”
I think many people were surprised or didn’t know what to expect, didn’t know if it would be similar to b’nei mitzvahs they had attended in the past. It was very much like everyone else’s. She chanted two aliyot of Torah, did a d’var Torah and led the congregation in blessings. Ashley had demonstrated that when you put your mind to something, when you really want to achieve something, you can.
I had invited many of her teachers and aides from school. At the time Ashley was actually learning to read Hebrew at a quicker rate than she was English. She had dreamed of having a bat mitzvah, and she did. She showed us all that with time and support, anything really is possible, regardless of having a disability. I am grateful to Gateways for all they taught Ashley and for helping to instill a strong Jewish identity.
Ashley has now graduated high school and is in Mass Bay Community College’s Transitional Scholars program. She is also in a vocational program and enjoys working with children. She talks about working, living on her own and especially about getting married someday. I don’t know what the future will hold for her, but I will hold on to the event planner’s number, just in case.
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