Adventures with Margot

ASD Roadmap

Margot's most excellent summer...ever!

After 18 years of trial and error, we are starting to get summer vacation right, not just for Margot but for the whole family!

September 14, 2019

After decades of highly specialized research to untangle complex questions of possible causes and treatments for ASD, we occasionally circle back to misleadingly mundane questions. For example, what is the impact of ASD on the quality of life for the person affected, and for the rest of the family? I have learned to never underestimate the cascading effects of the often overlooked casualties of ASD, like diet, exercise, and fun. Addressing a poor diet, a lack of sleep and exercise, and isolation and boredom can sometimes have a greater impact on the quality of life than the most sophisticated interventions research has to offer.

In an earlier blog, I described one of the first casualties of disability - the winter holiday - that can also directly impact everyone's quality of life.  But summer holidays are arguably more challenging. The longer breaks (at least two weeks before and after summer school programs) are more difficult to plan for.  Schools eager to cut costs employ other measures (shorter school days, a 4 day week) that create additional stresses for families.

One of my first tasks as Statewide Director of Delaware's public school ASD programs was to face a group of parents angry that the school was closed for 3 whole weeks in August, before the start of the new school year. This was before Margot was born, and I confess that I did not get it, and that I struggled to be sympathetic. I got it (oh how I got it!) once Margot was born. As a result, I worked hard to reduce these breaks to two weeks statewide, and to revitalize other mechanisms to support parents (like significantly increasing access to state-funded respite).

A steely determination forged in these first early campaigns to recapture our winter holidays, tempered by alot of patience, humor, and support, has helped us to explore all of our summer options over the past 18 years.  After all, we wanted to do more than just survive the season, we wanted to create the kind of summertime magic that every child remembers. And this past summer, we think we did it! Twenty-five days spent away from home across 2 countries; 11 different campgrounds and rentals; 7 beaches, 3 lakes, 2 rivers, and an ocean; countless towns, trails, and other adventures. Margot's best summer ever!!

How did we do it, and what did we learn along the way? We learned to experiment with different adventures that we blend into a daily routine we maintain on the road. Do this successfully, and you create that ultimate of summer vacation adventures: the Road Trip!

The logo is adapted from Joaquim Alves Gaspar's drawing of Pedro Reinel's compass rose.