In 2006 my first son Daniel was born at 25 weeks and died from complications of prematurity. So many members of my synagogue reached out to us with love and support. So many were at our shiva and, 18 months later, so many came to Joshua’s, our second son’s, bris in the main sanctuary.
From that day, we brought Joshua to shul almost every week. He went to Shabbat Corner starting at 18 months even though the youngest kids are at least 3. He learned ALL the songs. He knew ALL his Hebrew letters.
I have a favorite video of him at 2 sitting with his mom. I ask him, how do you spell ahavah? He answers aleph-hay-vet-hay. What does it mean? I LOVE you! He shouts. I love that moment.
But then at 2 years, 8 months Joshua started nursery school in the synagogue and was disruptive. He couldn’t control his body and the school told us that he needed to be evaluated. That’s when we learned that Joshua has autism.
While it wasn’t easy, the school let him finish the year with a 1-to-1 aide. Joshua’s teachers and the preschool recommended that he go to a different school for children with special needs. They were right, of course, but it hurt for my son to no longer belong at our synagogue’s preschool, in the shul where I feel such a strong connection and sense of belonging.
At that point, Joshua’s connection to the Jewish community, as well as ours, began to wither. We couldn’t take him to Shabbat Corner because he was just too much of a disruption. Over the years, we tried bringing Joshua into the sanctuary, but he has a very hard time sitting still and being quiet. He fidgets, rocks and talks to himself. And so, we were shushed and felt shamed.
Shushing fails to consider Josh’s experience. Shushing is chastising, an accusation. They aren’t shushing Josh. He doesn’t care. They are shushing me, the parent! When they shush, they say, “Can’t you control your son? Can’t you DO SOMETHING?”
Shushing makes parents who are trying to raise children in our shul feel shame. It certainly fails to consider my experience as a father trying to daven while creating a nurturing Jewish environment for my child to engage with our tradition.
Fortunately, 4 years ago, as we began to feel like outsiders in our congregation, the Rabbi and Executive Director asked our fantastic director of the Tikvah program, the synagogue’s Hebrew school program for children with special needs, to create a class for Joshua and another learner even though Josh was only 6, a younger age than they normally start Hebrew School for Special Needs children.
Joshua ended up as the only student in the class taught by a teacher, a teaching assistant, and Joshua’s lead Behavioral Therapist. The three teachers worked together to reengage Josh with Torah stories, songs, Hebrew, and prayer.
The Tikvah program deeply and meaningfully reconnected Josh to his Judaism. We are so grateful for all the shul has done for Josh and for us.
Our Tikvah program takes the words of the prophet Isaiah—”For my house shall be a house of prayer for all people”—and makes those words real for everyone.
Tikvah is the tenuous connection that lets so many families continue to thrive at our synagogue.
So, when it comes to Special Needs programs for Hebrew School, our synagogue is second to none. The Tikvah program is exceptional and we are outrageously lucky to benefit from it. We are so fortunate to have the support and efforts of so many people who help enrich Josh’s Jewish identity.
However, if you are a family with young children and you want to pray as part of a congregation, our synagogue does not support us. Taking my children into the main sanctuary of the synagogue is much like taking them on an airplane: everyone wishes I was on a different flight.
This policy was actually spelled out, explicitly in the synagogue bulletin that was circulated before the High Holidays, which said, “Children of all ages are welcome at our services, but if your child is being disruptive, kindly remove him/her from the sanctuary (or other prayer spaces) until s/he calms down so that the behavior doesn’t interfere with the prayers of others.”
As a parent of a special needs child (really of any rambunctious child) I was self-conscious and afraid to come to shul for the High Holidays or any other occasion (aside from Purim and maybe Simchas Torah).
This is hurtful. This is painful. It may be unintentional, but this is not a way to welcome new families or families with children even in the best of circumstances. We should be encouraging participation from EVERYONE never discouraging it.
Rabbi Menachem Creditor wrote a wonderful essay about children in the sanctuary for the Huffington Post a few years ago. It is not specifically about children with special needs, but it reminds us that:
Our sanctuaries are not sanctuaries from children. They are sanctuaries for children.
The future of synagogues is their youth. The success of synagogues is based on making children feel comfortable being themselves in the community, in a house of prayer.
If we do not create an inclusive environment where children can be themselves and be welcomed, like our children’s voices, our community will eventually be silenced because of those who insist on davening without disturbance.
If you see a child having a difficult moment, offer the parent a friendly smile, a sympathetic nod, or an offer to help.* The same way you would offer to help someone having physical difficulty getting into the shul. Hold doors, make room in your pew, offer an arm, or help carry their burden. These are all ways to help and include.
Not all disabilities are “visible.” If you see a person exhibiting atypical behavior, understand that it might be a sign of a disability. Embrace that person created B’tzelem Elohim, in the Divine image. Our best instinct is to act with chesed, loving-kindness.
Some people with attention and sensory issues may find it hard to sit through services. Young children also need to move around. Practice acceptance and understanding of their need to move or get up and down during services.
Remember that a small kindness can make all the difference for any of us. I hope that by sharing this we can make many communities even more open and welcoming spaces.
Evan Stein is Director of Neuroradiology at Maimonides Medical Center.