On a 15-trail accessible challenge with my daughter with Rett syndrome

New Hampshire has its 4,000-Foot Challenge: Climb all 48 of the mountains in the White Mountain National Forest that are at least 4,000 feet high. Colorado has the 14ers Challenge: Climb all of the state’s peaks that rise at least 14,000 feet, of which there are more than 50. With my daughter Abby, who has Rett syndrome, I’ve lately been working on a somewhat more modest challenge: Walk all of the trails on a list I found of 15 wheelchair-accessible trails in New Jersey, where we live.

We’ve had a stretch of fine fall days in October, perfect for getting Abby outdoors — not too hot, not too buggy. So we’ve been hitting as many of these trails as we can, and perhaps we’ll walk them all before the weather turns.

For all of you who don’t live in New Jersey and have an unflattering image of the state, spare me your turnpike jokes. In fact, there are lovely outdoor discoveries to be made here: ocean vistas in Sandy Hook, quiet lakes in the Pinelands, river views in the Delaware Water Gap. Abby, unlike many with Rett syndrome, still walks, but slowly and not very far, so a decent outdoor adventure with her requires a wheelchair-accessible trail. She’ll walk some of it and ride the rest.

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Abby Genzlinger visits Cheesequake State Park in New Jersey, on an outing with her father. (Photos by Neil Genzlinger)

Our quest to hit all 15 trails on the list has an added benefit these days. As I’ve written previously, Abby, who is 29, has been doing a lot of unexplained screaming and sobbing for months now, and it’s draining for both me and my wife, Donna. A car ride often quiets her, though, and the trails we’re exploring are all at least an hour’s drive from our house.

Donna has mobility issues of her own and doesn’t join Abby and me on these outings, so they are a chance for her to get a break. We haven’t had a lot of luck lining up respite care, so these trail outings are our substitute, at least for Donna — an hour to drive there, two hours to explore the trail, and an hour’s drive home equals four hours of peace for Donna.

So Abby and I have been bird-watching at Cheesequake State Park (where a viewing platform has a sign that seems made for Abby’s current crankiness: It says “Crabbing Bridge”). We’ve watched ducks against a background of fall foliage at the Pemberton Lake Preserve. My favorite so far has been the Atsion Lake trail in the Pine Barrens. I know it’s a photographic cliché, but I’m a sucker for those pictures where you get trees in their fall finery and a mirror image of those trees reflected on the water.

Abby Genzlinger looks out at scenic Atsion Lake, within the New Jersey Pine Barrens.

Recently, I realized something about these outings: I have no idea if Abby likes them. She doesn’t do the screaming and sobbing thing while we’re walking these trails, but I don’t know if she enjoys the natural beauty surrounding us the way that I do. Not everyone appreciates nature, as we know from the people who are eager to make a buck by strip-mining or clear-cutting it. Abby is nonverbal, so it’s hard to tell, but for all I know, as she looked out at Atsion Lake the other day, she might have been thinking, “Geez, Dad, more water and trees? Give me a break.”

So it has dawned on me that these outings aren’t for Abby at all. They’re for me. I love the outdoors, and if it weren’t for the demands of caregiving for a child with Rett syndrome, I might well have attempted that 4,000-foot challenge in New Hampshire. Taking Abby on these wheelchair-accessible trails is my substitute, I guess. It’s not quite respite, since I still have to tend to Abby’s needs while we’re walking (and pushing that wheelchair on some of these trails is a workout). But it’ll have to do.

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