Margot's journey

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!

When Margot was about to become a teenager, she started to struggle more at home and in school, showing  high rates of aggression. So I decided to step out of the traditional workforce to have more flexibility to influence her programming. This was key to beginning to develop her repertoire of outdoor adventures detailed elsewhere that are so essential to her (and our) quality of life. For example, we began to kayak together, and this has become one of our favorite summertime activities, in addition to biking with her adapted trailer and tandem bicycle. 

We also began to see how much her overall strength and fitness influenced her willingness to work, so we began to explore how a regimen of regular walks would help. These walks saved our lives when Margot's  school was closed for 5 months during COVID, as Margot thrived on longer and more difficult trails.  Walking and other outdoor activities now provide a key break in her daily schedule, increases her endurance for work, and allows us to sometimes leave the car behind and walk to local spots.  They also allow us to maintain a routine on vacation.  We documented how Margot learned to hike for others to follow.  

Our push for more active integration into the community had already led us to transfer her from a traditional, center-based program into a community-based one in 2018. Over the course of several years, we helped to build Margot's interest in a range of different community activities (like hikes with one of her aides pictured here) that she could enjoy for 60-90 minutes at a time. Thinking ahead to adulthood, we began to intentionally add community-based sites to her school program in Downingtown that  corresponded to the kinds of opportunities available in Kennett.

This led us to began our outreach to key community partners who could serve as integration sites. Our first stop was our local YMCA.  We had already added a community-based fitness activity at school, in anticipation that this could be generalized to the Kennett YMCA, where Margot already enjoys swimming. This also led us to work with other parents to explore other opportunities, and we launched new programs that benefit Margot and others, like monthly respite recreation nights. 

Based on her schedule at school, we concluded that Margot's future would need to include some kind of center or hub to support her community-based work and volunteering.  A hub would allow her to take longer breaks and address her self-care needs in a stress-free environment,  Not finding any center-based programs in our region, we bought a small house in the town of Kennett in anticipation of her graduation in August 2022.  The house is a hub for Margot (and perhaps others like her in the future). And in May 2022, Margot began receiving one day per week  of her schooling in Kennett, using the house  as her hub. The house includes spaces for relaxing, working, and exercising.  

We learned that transitions are hard, and that Margot's would take a lot of time and patience. We smoothed the transition by having Margot begin her Kennett school day with two hours of instruction at our house to generalize domestic skills acquired at school.   

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One thing that makes transitions hard is that many tasks have to be adjusted because no two settings are perfectly alike. This is especially true for someone like Margot, who can struggle even with a simple task like holding a different laundry basket.  This was stressful for her, but interspersing 15 minute bouts of work with short breaks really helped. 

We discovered other ways transitions stall.  For example, the pre-vocational tasks Margot learned in school were simply different from the opportunities we were finding in her community.  So Margot had to learn a whole new set of skills to become a steward of Kennett's "Little Free Libraries" -  in this case, putting labels on books.  By combining this with other activities (like dusting the library shelves), we created a 60 minute outing to the library.

We also learned to create routines within community outings (e.g., using the bathroom, taking breaks...). And finding quiet spaces to work or take a break - sometimes in a separate room if needed - was really key. 

Transportation is a major barrier for adults like Margot. Part of the reason for the Kennett house was to integrate active transportation, naturally building exercise into her daily schedule as she walks from site to site. Over time, we hope this will become part of her work.  Here, Margot is practicing pulling a cart with books that she will use to restock the "Little Free Libraries" scattered around Kennett (like the one over her left shoulder).

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We learned that, as much as Margot loves being outdoors, walking can be tiring.  So we adjusted the number and length of her community outings, and used the Kennett house as a hub for taking longer breaks in between.

We were delighted that our advocacy gave Margot (and more than 1500 other students like her across Pennsylvania) an extra year of school.  We used this time to add a 2nd day in Kennett by July 2022, and a 3rd by January 2023. This allowed us to introduce new activities at Margot's pace.

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We used Margot's familiarity with supermarkets to add a volunteer community outing in Downingtown- shopping for a local food cupboard .  And so it was easy to generalize this to our local food cupboard, using our local supermarket!  

After seeing how much Margot thrived in the outdoors, we decided to try involving her in conservation. Here, Margot is 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! 

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We are continuing to add new tasks to Margot's day, and learning as we go along, so check back later!