Feeling adrift following the end of Camp Communicate

This was our second summer without Camp Communicate. Our daughter Abby, who has Rett syndrome and is nonverbal, never really got the full benefit out of the camp, which sought to encourage nonverbal kids to use their communication devices. But the absence of the camp has left a big hole in our summers nonetheless.

Camp Communicate, which we took Abby to for years, was a four-day summer camp held on the Belgrade Lakes in Maine, under the auspices of the Pine Tree Society, which has been running programs for children and adults with disabilities since the 1940s. Most years the camp, which was in an impossibly picturesque spot on North Pond, was in August, and though I’m sure it rained some of the days we spent there, I remember everything as being idyllically sun-splashed.

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Looking forward to camp

Abby Genzlinger attends Camp Communicate in August 2022. (Photo by Neil Genzlinger)

Camp Communicate was a camp for the whole family, not an overnight drop-off camp, and some years not only did Donna and I go with Abby, but Abby’s sister or an aunt joined us. The staff was dedicated and skilled in alternative communication and was augmented by speech therapy students from the University of Vermont. 

Days at camp were a mix of activities designed to encourage the use of communication devices and activities that were purely recreational, like pontoon boat rides. Evenings might consist of a game night, a talent show, or a dance. By the final day, Abby was pretty buzzed from the nonstop commotion. 

Yet despite all those dedicated staffers pushing her to use her communication device — she has a Tobii eye-gaze computer — she finished each Camp Communicate only slightly more proficient on the device than she’d been at the start.

Partly, I think, that’s because the Tobii is not easy to use, for Abby or her parents. Hitting the word you want with your gaze is inexact at best, and you’re limited by the relatively few words that are available in the device, whereas the English language has tens of thousands of words. I feel as if, to use a video game analogy, we’re in the Pong stage of development of these devices. Much more sophisticated stuff is presumably in the pipeline.

Missing Camp Communicate

Abby Genzlinger enjoys a sunset with her dad at Camp Communicate in Maine. (Photo by Donna Genzlinger)

And partly, Abby didn’t get the full benefit of Camp Communicate because Donna and I didn’t push her once camp ended. The experts say that to get a nonverbal kid to use these devices regularly, you, her caregivers, have to model the use. A lot. That’s a nice ideal, but there’s a thing called reality that gets in the way. A lot. Sure, we could sit beside Abby all day and use the Tobii to talk to her, if someone else wants to come mow the lawn, do the dishes, etc., etc., etc. 

Camp Communicate also left me wondering about the communication expectations we place on nonverbal kids and adults. (Abby is 29.) Our society assumes everyone has opinions and wants to share them, especially in these days of social media. I know all the mantras about nonverbal kids — “presume competence” and “just because she’s silent doesn’t mean she has nothing to say,” and the rest. But what if Abby simply exists in a different headspace than most other people, one that doesn’t feel the need to yak all the time?

Anyway, in 2024, we were told that that summer’s Camp Communicate would be the last, at least for the foreseeable future. The reasons were a bit vague, but my sense is our little camp just got squeezed out of the schedule. Maine summers are short, and Pine Tree runs camps for all sorts of subgroups within the universe of disabilities. (One year, Camp Communicate had to share the space with hearing-impaired kids, which was a sight.) There are only so many weekends available.

So why have our summers felt empty since 2024 if the camp didn’t really help Abby master her device? Because nothing we’ve been able to concoct has come close to providing her with the constant activity, the sense of being part of something, that she got from Camp Communicate. For us, for years, that camp was the season’s defining event; it anchored our summers. Now we’re just adrift. 

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