disabilities

How We Gave Our Non-Verbal Son a Joyous Bar Mitzvah

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My son Eitan has a rare, genetic disability called RTS: Rubinstein-Taybi Syndrome. It’s a genetic deletion syndrome that occurs about 1:350,000 kids and causes global developmental delays and a host of chronic medical issues. Eitan is pure sunshine, and we love him and our other kids with all of our heart and soul. He is also non-verbal, very developmentally delayed and 100% g-tube fed.

As we neared the time when Eitan would become bar mitzvah age, my husband Avi happened to have read a Hebrew article written by an Israeli rabbi about special needs rite-of-passage ceremonies. This article suggested that the bar or bat mitzvah of a special needs child should be celebrated with as much passion and enthusiasm as a wedding–because often, the disabled in our community either can’t, or just don’t make it to the chuppah. We had always planned to make this an important time in Eitan’s life, but something about that reasoning really resonated with both of us, and it struck a particular chord with my husband. And so, as Eitan’s 13th birthday approached, we began planning this day together with boundless enthusiasm and love.

My husband is from an Orthodox, Sephardic Israeli family (I’m from a more “conservative” Canadian, Ashkenazi family, but we’ve found a nice, happy middle ground). Still, there were some halachic (pertaining to Jewish law) issues relating to boys and special needs that we had to think about. Eitan, at the moment, doesn’t have the cognitive capacity for traditional prayer, or the tactile inclination to wear tefillin (phylacteries). My mother-in-law did purchase a beautiful set for him several years ago, but our current plan is to have our youngest son Daniel wear them, and say prayers in Eitan’s honor as well, until he is capable of wearing them and praying with them on his own.

We decided that Eitan’s actual bar mitzvah event would be a dinner that brought together our loved ones and friends, not a synagogue ceremony. At this stage, he does not have the capacity for formal prayer or reading from the Torah. I said a few words on behalf of our family, thanking everyone for coming together to mark Eitan’s coming of age and celebrate his life, and his place in the Jewish community. Eitan helped make the hamotzi blessing by putting his hands over the bread, and stood with my husband as he said the blessing over the wine.

When planning Eitan’s party, we started off by asking ourselves if it was appropriate to have a dinner when Eitan himself was not eating orally. We decided that bringing all of our friends and family together for a festive meal was the traditional and honorable thing to do, and that Eitan would merit spiritually from the blessings said in his honor. We knew we wanted to have a DJ and dancing because Eitan loves music and loves to dance, and dance inspires joy, just as Eitan brings joy to so many people.

And it wasn’t just me and my husband planning for Eitan’s special day. In addition, my other kids, Reut, now 17, and Daniel, now 10, helped prepare a fantastic slide show with Eitan’s favorite music and photos that showed his progression from a sick, struggling, ventilated baby in an incubator to the Taylor-Swift-loving, dance-crazy, happy, and fun young man that he is today. That slideshow was a real labor of love, and there wasn’t a dry eye in the house when we showed it. At Eitan’s bar mitzvah, we ate, we danced, we raised him up on a chair, we hugged him and kissed him, and he was smiling and enjoying the attention all night.

Once we had the ceremony and the party planned, we had one other big decision to make: how to incorporate an Israel component into our simcha. My husband is Israeli and I lived in Israel for a number of years. Israel is a big part of our lives and we have family and friends living there. We are strong supporters of Israel, speak Hebrew and English at home, and hope some day to be able to live in Israel again.

After doing a little research, we decided to partner with an incredible Israeli organization for the disabled called ALEH, which was founded by Israeli war hero Doron Almog in honor of his late son Eran. We decided to “twin” Eitan’s bar mitzvah with that of a child at ALEH in Jerusalem.

What this meant in practice was that we purchased an iPad (along with a couple of other families) to donate to the kids living at ALEH in Jerusalem, and had a little bar mitzvah ceremony there. We brought refreshments, met the ALEH residents and then some American volunteers played energetic, soul-filled klezmer music and danced, had a tour of the ALEH facility and met the other young people living there. In addition, we hosted my husband’s entire family for a festive meal, and additional words of prayer and Torah were offered again, in honor of Eitan.

Eitan will be 15 this month and people still tell us how meaningful his bar mitzvah was, and how they can still feel the joy from that evening. It was pretty unique.

I can’t say whether Eitan’s bar mitzvah was actually his “chuppah” or just a trial run, but it was beautiful, personal and my family’s very proud and public celebration of his birthright. We wouldn’t have had it any other way.

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The opinions expressed here are the personal views of the author. Comments are moderated, so use your inside voices, keep your hands to yourself, and no, we're not interested in herbal supplements.

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