In recognition of Jewish Disability Awareness Month (JDAM), we have invited several community members to share their thoughts with us. This is the first in the series, written by Rabbi Margot Stein, Board Member. For more information on JDAM, click here.
My son, a high functioning child with autism, did not speak until he was four and is only now, in 7th grade, learning to read independently. Yet he chanted from the Torah, recited the Sh’ma, helped lead the service, and delivered a D’var Torah that was unique in several important ways. He was thrilled, and so were we.
How can you make your child’s celebration equally memorable?
1). Know your child and make accommodations accordingly. Do not hesitate to ask your rabbi to work with you on this. If your child is outgoing as our son is, and can handle a lot of guests, fine. If she is fearful of crowds or has performance anxiety, keep it intimate. While we are close with our synagogue rabbi, we also asked Rabbi Zev Baram from the Philly Friendship Circle to be a spiritual mentor for our son, since the Barams’ work with the special needs community has taught our son much about what it means to be Jewish.
2). Choose a time and place where you have more control. A big sanctuary with two b’nai mitzvah each week is probably not going to be the right setting if you want to bend rules and develop an individualized event. We chose a minha (afternoon) service, beginning an hour before sundown on Saturday afternoon and culminating with havdallah. It’s a beautiful time of day, and one that has fewer requirements in terms of the liturgy but does include a Torah service (be sure to calculate the correct reading based on the following week’s parsha).
3). Determine how your child learns best. Is she a natural mimic? Can he read with ease? Would a kinesthetic, hands-on approach be more effective? I can’t tell you how helpful it is to work with a qualified tutor who is able to develop a multisensory plan. Rabbi Michelle Greenfield brought Alef-Bet games, developed a reward system to motivate learning, created an enlarged xeroxed notebook of the appropriate pages from the prayer book, used highlighters and other visual cues, and created a visual schedule of each week’s tutoring session. As parents, we also made recordings, built rewards into his week for practicing, and made arrangements with his special needs camp to continue his tutoring over the summer.
4). Don’t be afraid to veer off the beaten path (and get help from others along the way). As the weeks went by, we realized our son would not be able to deliver a traditional D’var Torah. So we asked a beloved adult friend to help: together, they prepared the story, decided what was important about it, and designed a conversation that elicited the points they wanted to make. On the big day, this friend gently guided him through their foam core note cards, asking questions and elaborating here and there. Our son’s natural talkativeness and preference for relational experiences shone through.
5). Do some things that are just plain fun. In our case, announcing the page numbers seemed to fit the bill (the rabbi whispered them in his ear and he repeated them aloud). One boy wrote a song for his D’var Torah and sang it with his dad, with the whole congregation joining in on the choruses. If your child has a special interest, build that into the service in some way.
6). Plan the party or festive meal to follow with as much support as you need and in a way that works for YOU. In our case, we wanted the dinner to follow right downstairs for the easiest possible transition. With 15 classmates with a range of special needs in attendance, we also invited a parent chaperone (both parents, if we knew them or had socialized with them), plus we hired two teenaged girls to help the kids dance and follow directions for games on the dance floor. Work with your band leader or DJ to make the whole party as easygoing and kid-friendly as possible, or skip the music if your child dislikes loud noise.
7). Do a Mitzvah Project. Sometimes we let kids with special needs off the hook when it comes to helping others. I think this can be a mistake; all kids feel better about themselves when they are helping others. Choose a project that is attainable for your child, and support her every step of the way. Our son wanted to help animals (which integrated perfectly with his study of Noah and the Ark). We were lucky to find Sam’s Hope, which packs donated food and delivers it to Food Pantries, shut-ins, and others who cannot keep their pets at home without food support.
8). Delegate someone to troubleshoot logistics once the service begins. Your job is to sit up front, surrounded by loved ones, and enjoy every second as it unfolds!