Tikvah Family Camp- in Honor of JDAIM

Posted by on 02/19/2019

By Shira M. Cohen-Goldberg

We are on a mountain, surrounded by mountains, by a lake. There is stillness. Except for my oldest who is clutching their ears, overstimulated, my daughter, yanking on my arm “mommy, mommy,” and the shifting inside my belly, our baby, a month away from birth. Our cabin has a sign on the door: Welcome Cohen-Goldberg Family. Baruchim Ha’baim.

Hallel is my bright-eyed oldest child. They are a brilliant kid who learns things instantly though what looks like “not paying attention.” Hallel has sensory processing disorder and every time we go into a public space there are multiple considerations to ensure that we are not met with disaster. Last year, Hallel was diagnosed with ASD, which the neuropsychologist said may be a passing diagnosis and may not be. But Hallel is way more than their diagnosis. We have a complex kid, easy to love, who is also funny, clever, an empathetic person and a sensitive friend.

I discovered Tikvah Family Camp shortly after Hallel was diagnosed. I was looking for resources to support us in Hallel’s Jewish education, seeing as enrollment in day school did not feel like the right option. Hallel could get good services through the public school, couldn’t tolerate the 45 minute bus ride. We had depleted our bank accounts paying out of pocket costs for therapy. Up until this point, we had never thought of ourselves as a “special needs” family. But after the ASD diagnosis, we were in the club.

I am often asked what would make our family comfortable in the synagogue or at a Jewish family program. I can do my best to detail our needs, but what would make us most comfortable is not so much a checklist; rather it is an approach or mentality. Tikvah Family Camp has it. I’ll do my best to enumerate the “it.”

What Hallel needs:

  • A space where they may try new things in a supportive environment.
  • A chaver (“buddy”) to help them try new things even when they are hard: communal eating, campfires, sports, lake swimming, tefillah (prayer) and shirah (singing) after Shabbat dinner, Havdalah with guitar.
  • A genuinely encouraging environment where being who you are and being embraced for it is the only way.
  • A Jewish experience where Hallel’s parents are not stressed about being judged, or distracted by creating an exit strategy if Hallel has a meltdown.

What our family needs:

  • A community within which to simultaneously enjoy our family and our Jewish life.
  • A relaxed, supportive environment where all we need to do is catch the eyes of another set of parents, and know we have stories in common.
  • A way for Hallel’s siblings to have Shabbat, Shirah, Tefillah, and lots of Hebrew even though it’s hard to have these things during the year as a family unit.
  • Time where our kids are occupied and happy, and we are relaxed.

We do not have to apologize or explain. Hallel has needs. So does our family. None of these needs are hard for Tikvah Family Camp to fulfill, because they already know how to nurture a joyous Jewish family experience for a family like mine.

I remember my years as a Ramah camper and later Ramah staff member, and how they filled me up and supported my Jewish growth. Many remember summer camp as the nourishment that enabled them to get through the year. I hold onto my family’s experience at Tikvah because it protects me from despair that our family’s Jewish life is not what I had once envisioned. (When I was an aspiring parent, I often had it all figured out).

Recently, I received this message from the Director of Hallel’s former Hebrew School.

I am sorry that Hallel did not enjoy his experience in Kitah Aleph due to the classroom environment and his unique style of learning. 

This blithe reply, while well-intentioned, does not reflect the 10s of hours of communication which went towards ensuring a Hebrew School experience for Hallel one morning/week. It also did little to acknowledge the emotional toll on our child, and also on us, when we outlined their needs, were told that the school would accommodate, and were then told that Hallel did not know how to “behave” in class. We agreed to wait in the synagogue lobby to provide extra support for Hallel when they needed a break. And all of this simultaneous to the birth of our 3rd child. Still it is nothing unfamiliar after 7 years with a child who has special needs.

But such is the life of a special needs parent. Hours of communication, problem-solving, strategizing, regulation of our own emotions to be capped off by the all familiar: It’s not you, it’s us. Our child just needs a different situation.

It is exhausting. I am exhausted. Crafting Jewish education opportunities in communal situations is very hard for our family. Yet we need it. As Jews we need community. Not a community we apologize to. A community who values us for who we are and what we have to offer.

So Tikvah Family Camp is our Jewish home. It’s the place we hope to go back to when life in the outside world is too hard to manage. It a place where we are among family; where things are easy. Amidst those Pocono mountains is where the soul of my Jewish family breathes steadily and effortlessly.