The End of an Era

End of an Era“I regret to inform you,” the email began. I closed my eyes and released a deep sign, my shoulders slumping. It was not the message I had wanted to get that Saturday morning. It wasn’t unexpected; yet, I was still surprised—or was I just terribly disappointed.

“Madison had another sleepless night last night,” the email continued, “getting about 2 ½ hours of sleep.”

I knew what was coming next before I read it. She wouldn’t be invited back again. This was it. After 10 years of attending her precious camp, she would no longer be able to go.

Although I was sad, I understood. It wasn’t good for the other campers, the staff, or really for Madison. She loved it though. In her limited vocabulary, she was able to voice one of her few phrases, “I want camp please.”

It broke my heart to think I would no longer be able to provide that for her.

It’s hard to know when to give up. To put an experience in the past tense category. To let it go.

Was it time? Did I have a choice?

So I investigated. The new medications were working in her residence. “We think she gets excited about camp,” I heard more than once from staff there.

Maybe it was time to move camp to the “wonderful experience” category, close that chapter, and be grateful instead of persistent. Maybe it was time for a change.

“Does she have to go to camp?” one of my girlfriends asked me.

I admitted that she didn’t. Madison’s adult residential placement is a full-time year-round program. In fact, camp attendance was quite a bit of work to orchestrate. But I wanted it for her, especially since she regularly asked for it. And I didn’t want her to lose that capacity to be away from the residence and experience something new.

The next week I had lunch with a fellow Board Member of Pathfinders for Autism who wanted to introduce me to a respite care organization, Maggie’s Light, and its founder. Although he and I had served on the Board together for a few years, we had never talked in depth about our children’s activities or their place on the spectrum. But when I mentioned Madison’s camp experience he laughed—in a kind way. He’d had a similar experience.

“Yes, we had to pick him up,” he said, smiling. “We’d already gone to the beach for the weekend so I had to drive back to get him,” he laughed. “I’d never spent so much time in the car,” he paused to grin once more. “But I understood. Just not a good fit.”

I marveled at the story, but marveled more at the way he told it. Animated. Matter-of-fact. War story style and yet with a light touch.

“But we found another camp. It’s great,” he kept talking. Then I started taking notes. But mostly I kept absorbing his energy and attitude.

I forget how much we can learn from each other.

I forget how much we know about that angst of not knowing what to do—whether to push or give up.

I forget how comforting it can be to be around other parents who struggle, too.

I forget how refreshing laughter can be with we try and fail.

I forget how encouraging it can be to know you are not alone in that quest to find opportunities for our kids.

And I’m grateful. For the lunch. For the laughter. For the chance to learn. And for the small but potent dose of inspiration I received from my fellow Board Member.

Another camp. Another opportunity. Another chapter awaits.

This column was originally published as part of my “Tuesdays with Madison” series at AutismAfter16.com.