Hiking with Margot
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Abilities, interests, first routines
Until she was about 10, Margot (in the middle in this picture) insisted on her stroller whenever she was in the community. After walking 20-30 yards, she would begin to pull at us to get back in.
We thought this was due mainly to Margot's abilities, namely significant Intellectual and Developmental Disabilities, complicated by very limited vision in one eye, and Cerebral Palsy. Though the latter is mild, it left her with limited strength, balance, and muscle tone. Walking was just more difficult for her.
So when she was 8, we developed a first plan to build her capacity. Margot's first goal was to walk around the school, 10 feet further each week. Over two years, she became stronger and more confident, comfortably walking up to 200 or 300 yards
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By the time she was 10, she was strong enough to push a shopping cart around the perimeter of a small supermarket. We set new goals, by having her walk farther, adding one aisle at a time. We started to tap into her interests, by asking her to put items in the cart. We discovered another interest that motivated her to work even harder; that she enjoyed walking when she could greet people with a "ha".
When she was 12, we made a plan to explore other kinds of walks. We always tried new kinds of walks only if she was happy and comfortable and the conditions were right, and we were ready to end quickly if things were not working out. First, we tried walking on real natural paths where a stroller cannot easily reach, like here in Brandywine Creek State Park. Our bonus was watching her discover the sights, sounds, and smells of nature!
Excited by our successful nature walk, we decided to try the ultimate city walk; through Times Square on Christmas Eve. She was SO stimulated that we continued our walk for another mile and a half, her longest to date!
And then we added walks with family (and eventually friends). Walks became the one of the first real outings she could enjoy with someone else, as here on the High Line in New York City with her grandmother. These walks suggested that Margot had a real sense of adventure, another interest we can take advantage of when planning other walks.
We also began to see the potential of a walking routine as a way to help Margot (and us!) to stay happy and healthy. Walks have since become a key activity for breaking up days when school is closed. Walks have given us a familiar activity we can do anywhere - especially useful on trips to new places, which we had hesitated to try until then.
While we continued occasional walks over the next four years, we found it hard to consistently and comfortably walk more than a mile or explore new trails. We got a puppy to try to make walks longer and more fun. But we could still never predict how she would do on a path that was longer or unpaved, or when the weather was not ideal. And because she could not tell us when she was hot or tired, she was easily overwhelmed in unfamiliar situations.
Hiking during CoVid
CoVid was a huge challenge. Margot was home full-time, and could not go into ANY community settings. Building on Larry Knutson's groundbreaking work on accessible trail design , we began to systematically explore how someone like Margot might truly enjoy hiking, of walking longer distances on a greater range of natural trails. This grew into a set of principles I call Progressive Access .
I needed to really understand Margot's strengths and struggles. So we walked different paved paths or easier natural trails almost daily. I noted the length and other features of each trail, and Margot's response to them. And we learned a lot together!
I learned the signs that Margot is becoming tired or uncomfortable (she grimaces and grinds her teeth), and take this as a signal to slow down. I also learned when she is approaching her limit (she does the above while tugging at me repeatedly, even after we have slowed down), but that we can still finish comfortably if we are at least three quarters through our walk by that point.
This established the walking routine that still works well for Margot, and for us! We walk together around 10am on most days whenever Margot is not in school. This is the perfect time for a break in her morning routine, and allows us to push our big daily outing back into the early afternoon.
We used these experiences during CoVid to better establish Margot's zone - the length and type of trail she can comfortably walk when conditions are good. By tracking her progress on a map, I learned when Margot was likely to hit her wall. This was initially after a mile and a half, even on an easy, familiar, paved trail. We have slowly extended her zone, to include longer and more difficult walks and hikes.
We use this zone to adjust our expectations regarding the length of our walk at each stage, whenever we introduced Margot to other trail characteristics that she might find stressful, like the slope of the trail. Even a section with gentle or moderate slope, like on this path at Auburn Valley State Park , sap her energy quickly. So we scale back expectations for the length of our walk on trails with long, gently sloped sections or multiple sections that are more steeply sloped.
Margot quickly became comfortable on easy trails with a natural surface, but can still struggle with uneven surfaces that many walkers might barely notice, like this section of the Hidden Pond / Indian Springs Trail. Margot noticeably slows and grimaces when stepping on stones just 3" high, perhaps because of her poor balance or weak ankles. And altering her stride to avoid these kind of stones is not always easy, because of her poor eyesight and coordination. So on trails with uneven surfaces, we do not expect her to walk as far.
Very uneven surfaces with large stones and roots - like these logs at Marshall Mill House Preserve - can be even more challenging. And major obstacles - like a small stream or a series of large boulders - are almost impossible, and sometimes force us to abort our hike.
Margot really struggles when these challenges were combined. For example, downhill sections of uneven trails - like this section on Peacedale Preserve - really tax her balance AND coordination.
Because Margot compensates for uneven trail surfaces by leaning on our arm, we pay attention to trail width. For example, uneven surfaces on a very narrow trail (e.g., 18' or less) become even harder, because Margot can no longer lean as easily on us.
When we looked at how Margot responded to the weather, we learned that she tolerates cold and wet weather but she HATES to sweat. So we check the forecast, and dress her carefully. We also make different choices on hotter days, like walking earlier in the day, on shaded trails, for a shorter distance, on a relatively easy trail, and so on. In addition to making sure Margot is not hungry or thirsty before we set out, we adjust expectations whenever anything else seems to be affecting her mood.
We learned that all of these factors - length, slope, trail surface and width, and weather - add up to determine the total stress that Margot is likely to experience walking a given trail on a given day. By considering all these stressors, we can identify the new trails that are in her zone: i.e., that are just the right amount of challenge. So on a nice day, for example, she can really enjoy a longer walk on a flat, wide, even, natural-surfaced trail like Springlawn, even if she is unfamiliar with it.
New people, places, & routines
We made a plan to explore how Margot did with other people. Just before CoVid, we had her school add a longer walk to her weekly schedule. After returning from CoVid, we had the school increase this to two walks a week, and encouraged then to explore longer and different kinds of trails based on the lessons we learned. We also encouraged the school to try Margot on a treadmill.
And they did - up to two miles (even on snowy trails) and 20 minutes on the treadmill! These new routines really helped Margot to become happier and healthier, and build her capacity for hiking. And her staff loved them too!
We also looked carefully at how to plan longer hikes in unfamiliar places, by scanning existing maps for elevation changes, checking reviews for information on trail widths and surfaces, and identifying shortcuts should conditions prove too challenging. This hike through Nolde State Forest was one of our first successes.
We wondered what would be needed for even longer walks. We encouraged everyone to build in breaks, which Margot slowly began to enjoy, like this break with Monique on a long walk around a lake in Chenango Valley State Park .
This also gave a chance to begin to witness how Margot sometimes loses herself - and perhaps find her peace - in the sights, sounds, and smells of nature.
All these lessons now make it possible to successfully plan real adventures that Margot loves, like this one in Wellesley Island State Park . A one hour paddle on a hot summer day was followed by a two mile hike on the River Trail back to our start, a hike that included steep and uneven sections. We can now plan vacations around these adventures that the whole family loves.
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