Reclaiming the outdoors as a family
More than twenty years ago, my wife Monique and I moved to Kennett with our son Nicholas. Shortly afterwards, our daughter Margot was born with significant intellectual and developmental disabilities (I/DD), and partial blindness. Though her cerebral palsy is mild, it makes swallowing difficult, and so Margot is also entirely tube fed.
We worked hard to reclaim our life as a family after Margot's birth, and adopted Lili three years later. To find ways to help Margot, I tried to draw on my experience as a child psychologist specializing in Autism (click here for a brief resume). And we learned a lot on the way!
We wanted to help Margot have the same quality of life that we enjoy, which includes enjoying the outdoors. We began by biking together in 2011. We have since covered thousands of miles together on paths and trails across the eastern US and Canada, as documented for the Rails to Trails Conservancy.
We learned that adaptive equipment can sometimes be the key to making all kinds of outdoor adventures possible. For example, we have brought Margot in our Wike special needs trailer everywhere, including on packed snow trails in Canada at 10 degrees F.
We began to kayak together in 2012 on rivers and lakes around Kennett. Now we kayak together every summer on the St. Lawrence River (pictured here) where I first canoed as a child. We learned that Margot has a real sense of adventure!
We began to expand our biking adventures with a specially adapted electric tandem in 2016. Not only did this allow us to return to road biking, but we learned that these outdoors adventures were the best way for Margot and I to share these adventures with other people, like her mom here on the Enola Low Grade Trail.
Though we had started short nature walks in 2010, these really took off when Margot's school was closed for 5 months during COVID. Through our evolving Progressive Access model, we learned how to help Margot thrive on longer and more difficult trails, and then documented her progress for others to learn from.
And we learned that, with a little guidance and support, school staff could also enjoy long hikes with Margot. They had fun building resilient routines that helped Margot hike all year long - even in the rain and snow.
Our adventures with Margot opened our eyes to other adventures! We have since embarked on multi-day hiking and biking trips across Europe and South America, like this trip to the Andes to celebrate Nicholas' graduation from college.
Buoyed by the success of our other adventures, in 2018 we decided to try skiing. Over three years, I learned how to be Margot's skiing partner. This helped us to enjoy the outdoors together as a whole family in winter too, like on this trip to Mont Tremblant in December 2022 (check out this 2021 video of us skiing together!)
Witnessing Margot's excitement outdoors led us to re-think what else she might enjoy outdoors, and so we decided to try involving her in conservation. I was able to draw on my work as a co-author of national guidelines for including people with disabilities in land conservation. Here, Margot is putting these principles into practice, helping to take the first steps towards converting a swale into a rain meadow. Check out the video on YouTube to see how hard she is working!
Transportation is a major barrier for adults like Margot. So we began to build active transportation into her plans for volunteering as an adult. We purchased a property in Kennett that is a home base for Margot (and we hope for others) to walk or bike to local sites like the YMCA, fire station, and food cupboard. Here, she is practicing pulling a cart with books that she will use to restock the "little libraries" scattered around Kennett (like the one over her left shoulder).
Biking is another active transportation option for Margot. This led me to partner with national experts to propose designs that make our roads safer for cyclists, and run for local office to promote smarter investments in paths and trails. We also purchased an electric bike taxi that she will use for her future, bicycle-based delivery services as part of our non-profit.
Whether she is walking or biking, whether she is doing this for exercise or to be out in nature or instead of driving, Margot has grown to LOVE being outdoors, every day. And we hope that others can too!