Sitting Alone in the Hallway

Sitting Alone in the Hallway

At times, the world of typical families can feel like a country club that doesn’t allow families like mine, which includes a child with special needs, to enter. And unlike Groucho Marx, who once famously said, “I don’t want to belong to any club that will accept people like me as a member,” I desperately want my family to be accepted. Unfortunately, there is no button on the Little League website, or parks and recreation swim class sign-up, or after school club enrollment page that says, “Click here if your child has special needs.” The message I repeatedly get is, “Of course your child has a right to play baseball, take swim classes, pursue a hobby. Just not here.”

That’s a bitter pill for any parent to swallow.

We all want our kids to play sports, have hobbies, and lead well-rounded lives. And while it is possible to get my son into extracurricular activities, it requires a great deal of tenacity on my part. Each time, I am forced to describe all of my son’s weaknesses in order to gain access to the “club,” which can be depressing, especially when I’m seeking greater accommodations within the Jewish community.

My youngest child, Gabe, 6, has autism. When he was first diagnosed, many members of the community reached out to us. We came to find out that our shul, a small, progressive Reconstructionist community in suburban Boston, was home to many social workers, teachers and special educators. They, as well as other parents of kids with special needs, readily answered our questions, dispensed advice, and checked in on us as we struggled to learn how best to support our son.

Despite this communal embrace, I find myself wondering if our shul’s support system will be able to keep pace with Gabe’s needs as he grows. I also worry that our community will not be able to meet our needs as a family as we try to fully integrate with a child who needs extra support.

For instance, in order to participate in a group activity, Gabe needs a lot of structure, which most family events at the synagogue don’t have. Sometimes I can sit with him and interpret the directions for him. But in order for me to do that, I have to leave whatever programming is happening for the adults. Often, even after I’ve left the adults to be with Gabe, the environment is still too chaotic and we have to leave for the quiet of the hall. Sitting out in the hall with Gabe, both of us missing out on what is happening, makes me feel invisible, despite the fact that my family has played a very proactive role in synagogue life. My husband is on the board and participates in the ritual committee. I serve on the education committee and teach at the monthly preschool program at the religious school. If something isn’t working, I try to find a solution.

But I’ll admit, it can be draining to always advocate, to always be the one to ask the question, “How can we make this program accessible to families with kids with special needs?” I know what Hillel famously said, “If not me, then who?” but sometimes I don’t want to be the one chosen to lead the charge.

Last month, for the first time since Gabe’s diagnosis, I didn’t have to ask and prod. My family attended the Tikvah Program Shabbaton at Camp Ramah New England, a retreat for families with children with disabilities. The whole weekend was arranged with our whole family’s needs — Gabe’s included — in mind. Before the Shabbaton, I’d never really visualized what it would be like if, instead of trying to mold our family to fit a mainstream environment, the environment was molded to us. At Ramah, I didn’t need to be Gabe’s personal interpreter, referee or advocate because the culture supported him. He could participate fully without me. And while Gabe was off with his peers, I was able to enjoy the adult programming without feeling anxious. For one weekend, my family learned what it felt like to be, not merely accommodated, but truly accepted and nurtured by a community.

Back to home, back to reality. Right now, we are in the process of making a decision about Hebrew School for next year when Gabe will be in first grade. In our shul, Hebrew School meets once a month for preschool and kindergarten, then jumps to a weekly program in first grade. Though Gabe might be able to keep up in the program at our shul, there’s also a chance that he won’t be able to handle the activities, and we’ll once again find ourselves sitting out in the hall.

With this in mind, my husband and I investigated other options and found excellent program in our town that provides Jewish education for students with special needs. But choosing that program for Gabe is not without its downsides. We worry about how he will remain connected with the kids in our synagogue, which is already a challenge, if he doesn’t attend regular class with them. My husband and I would also feel disappointed to miss out on the excellent parent education sessions that accompany the Religious School program. We’ve learned a great deal, and become extremely connected to the other parents in our daughter’s cohort. We’d hate to miss this opportunity with our son’s cohort.

Either way, this will not be an easy choice. We love our synagogue. And over the last few years, I’ve seen our shul attempt to become more accessible to families with special needs. Recently, our rabbi matched Gabe up with Ava, a seventh grade student who wanted to work with kids with special needs for her Mitzvah Project. She has shadowed Gabe at the last several family learning events at the shul. With Ava’s help, Gabe has been able to participate without me. I’m grateful for my synagogue’s efforts. I just hope that the small steps will be enough to make it work for our family. I also hope that some of these changes can become institutionalized, that the advocacy I do for Gabe and my family can benefit other children and families down the road.

And it’s not like I don’t recognize the challenges inherent in implementing community-wide programs that are fun, educational, and meaningful for all. As an educator, I know the amount of time, planning and resources that are required to create a program that is accessible for most people. There is rarely time and resources left over to make a program inclusive for everyone, but we still need to try.

Alison Auderieth Lobron is a wife, teacher and mom living in Newton, MA. She works in the field of children’s social and emotional development. Alison is the creator of the blog The View Through Autism Glasses, in which she writes about lessons she is learning while parenting her two very different children.

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