Another Kind Of Holy Land
08/20/2014 - 08:09
Ellen Seidman
Fireman Max with his new friend June. Courtesy of Ellen Seidman
Fireman Max with his new friend June. Courtesy of Ellen Seidman

Editor's Note: This blog originally appeared on Ellen Seidman's blog: Love That Max: Special Needs Blog

Last Wednesday, I headed to family camp with Max for five days. I figured we'd have fun; I had no idea how meaningful our time there would be. It was full of firsts for Max—and the discovery of a whole other kind of holy land.

As a a teen, I was a counselor at two Camp Ramahs in New York and loved it. After I found out that the Ramah in the Poconos had a five-day Tikvah Family Camp for kids with developmental disorders and social learning disorders, I signed us up. (The Ramah Tikvah Network offers family, day and overnight camps at nine locations.)

The plan was Max and I would go on Wednesday and Sabrina and Dave would join us on Friday, after she returned from camp, only she liked being home too much to leave again so soon. So Tikvah Mommy and Fireman Max Camp it was.

We arrived just in time for the afternoon petting zoo. Max was into the cow, but was completely enchanted by the goat who pooped pellets in front of him. As the zoo was about to close, Max decided that he wanted a horse ride, and two staffers helped him up.

All of the staffers were warm and welcoming to everyone in the fifteen families who attended, especially wannabe firefighters. Max got an assigned buddy, Shana, a super-friendly counselor who hung out with him at activities. Our dedicated waiter regularly hooked Max up with assorted pasta dishes. Meanwhile, we had a spacious cabin all to ourselves, impeccably decorated with plaques from bunks past and wads of dried toilet paper stuck to the wood cathedral ceiling. Camp!

The grounds are hill-y, as camp grounds tend to be, and at first I thought Max would need golf cart rides to get around. He did well walking on his own, but he has a thing for golf carts so he tried to score as many rides as possible. During our first hour there, he slammed his foot on the gas pedal as a counselor had his foot on it and drove the cart right into our cabin's porch. But the broken railing was fixed within minutes, and they allowed Max back on the carts again...in the back seat.

Every morning, there were separate activities for kids with special needs, their siblings and parents, then family stuff in the afternoon. Max did arts and crafts, cooking, music, dancing, story time and swimming. One of his favorite activities: Walking up to the mic when announcements were made after mealtime and telling the crowd, "I want to be a fireman when I grow up!"

Meanwhile, the siblings of kids with special needs did their own activities, which included discussions about what it's like to have a sibling with disabilities. Parents had their own kind of fun; we could take our pick from Zumba, basketball, tennis, boating, archery. I joined Dina of the lovely Commonplace blog for two blogging/creative writing workshops, which also included the proper technique for throwing wads of wet t.p. onto ceilings. OK, not that. I took a bike ride down some back roads with beautiful scenery. I added a square to a group quilt:

Afternoon was family time; we could choose from tennis, volleyball, arts and crafts and swimming. I went boating with Max and Shana; my bad shoulder is still bad, so she did the rowing...until Fireman Max decided to take over.

It was the first time Max had ever rowed before, the first time he ever wanted to. One of the cool things about being Max being in a setting where he felt completely comfortable was that he was game to try new stuff, which included participating in kickball games. The biggest boating challenge: making sure his hat stayed on.

After kids were tucked in, counselors came to the bunks to babysit so parents could head out for the night's activities. We did an Iron Chef Competition, a trivia game and karaoke; we rocked Borderline, Let's Give 'Em Something To Talk About and Dancing Queen.

While Max sat out Ooey Gooey Stickiness (kids could paint, make Silly Putty, play with shaving cream and otherwise get completely messy), the campfire was a highlight, as befits a firefighter. Max arrived by making his fire engine siren noise, zooming through the crowd and up to the edge of the fire so he could douse it with his pretend hose. He also eagerly participated in the Saturday evening family talent show, with me and Shana; we sang "Let It Go" and Max did the chorus. The MC had asked people not to clap, at Max's request. So they held up their hands, wiggling their fingers to show their appreciation, and he took a big bow. Max didn't mind the applause he got on the last day at the Paper Plate Awards, however.

So, lots of fun happened, the communal kind you have in camp. But there was also a spirituality to our time there. Although Max is not usually one to concentrate during prayers, he was really into the interactive kind they had. He got up and stood at the pulpit, participating in a reading of the Torah, after being called up as Fireman Max. He observed and listened. He offered musical accompaniment.

I had my own spiritual awakening when my iPhone died, and realized that for the sake of my inner peace I needed to unplug more often. We also celebrated the sabbath, a day of rest when you don't drive, turn on electricity or talk on the phone (although Max didn't get the memo about taking a nap). I sat with parents on porches and talked about raising our kids as they played on the grass.

Max made some incredible connections all his own, befriending other kids with special needs and reminding them when they said "Hi, Max!" that his correct name is "Fireman Max." (We have yet to make it legal.) Once, a boy picked up Max's bandana bib. "Don't grab!" his mom said. Only what he wanted to do was dab the drool.

In the evenings, the siblings hung out in a gazebo near the cabins we were in, and Max wanted to be with them. The first night, I sat there trying to be invisible as the kids dug up a time capsule buried beneath the deck and debated what to do with its contents. Max kept saying something until I finally translated: "He's saying 'police' and he wants to make sure you don't get into trouble!" The next evening, Max told me he wanted to be with them by himself. I watched him trek up the hill to sit with them in the twilight, the first time he'd ever hung with a group of kids on his own. I'm sure it felt so good to him. Me, I was thrilled. These are moments you dream of as a parent of a kid with special needs.

After that, Max sat at the siblings table at meals. I was there to help him eat, but again I was invisi-Mom. This was a unique group of kids, ones who didn't think twice about welcoming a kid with special needs because to them they're a natural part of their lives. They included Max in kickball games, too. "My friends!" Max said as we left the gazebo one night.

Max is a friendly kid, but this kind of socializing—the kind that happens naturally at camp, the kind that happens with siblings of kids with special needs—was a whole new experience for him. This is the what I long for Max to have in everyday life: People who get him. Kids who welcome him. An entire world that's welcoming to him. We found it at camp. Obviously it's a special setting, a holy land all its own. As is often the case, it's up to me and Dave to figure out a way to forge opportunities for Max the other 360 days a year in which he'll feel included by so-called typical kids. But Tikvah, which means "hope" in Hebrew, had given me plenty.

We both came home happy and rejuvenated, thankful for a good time...and more.

Read all about Ellen Seidman here.

 

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