Others have told the story of parenting a child with a disability far better than I could. So I specifically focus here on the ways in which Margot has profoundly changed my perspective on the gap between research, policy, practice, and better outcomes for other people like Margot.
These episodes in her life illustrate breakdowns in the systems of support, and gaps in research regarding critical areas for both children and their caregivers. As a parent, I continue to be perplexed, dismayed, frustrated, but still hopeful about how the existing systems of services and supports can help Margot be happy and healthy.
Are these stories unusual? Not for the parent of a child with a significant disability, though many choose not to volunteer their experiences. And try to imagine how these stories might end for someone with fewer resources, like a single parent with a high school education and limited income living in an underserved region.
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Margot's most excellent summer...ever!!
After 18 years of trial and error, we have the right recipe for a great summer vacation for Margot and the whole family! The key? Daily swims and trails, fun people and places to visit, and comfy sleep and travel, wrapped into our first roadtrip.
It's all downhill! Teaching Margot to ski
We needed to create some winter fun, so why not try skiing? A detailed story of implementation, demonstrating what is possible when special expertise and equipment is married to common-sense behavioral teaching and careful planning.
No "Can't Do"
How do you deal with feedback always focusing on what your child can't do? Remain open to all possibilities! A video about Margot's adventures on a tandem bike, a zip line, a roller coaster, and walking her dog defy this "Can't Do" attitude.
Enjoying real food and real meals
Margot was fed on chemicals delivered drop by drop through a pump she was tethered to for hours each day. Now she eats healthier than most Americans. If it were up to the professionals, it might never have happened. Recipes included!
A leap of faith. Act I - The Inspiration
Our outlook often depends on a naive optimism about ourselves and our future. When disability strips that illusion from us, we need a leap of faith to try something new. I was inspired to leap into a river, in a kayak with Margot.
A leap of faith. Act II - The Implementation
Feeling inspired to kayak with a child who cannot speak or swim? You still need a real plan, or the cracks of doubt will widen into an implementation gap. And is there a lesson about turning research findings into real outcomes?
Siege or surrender?
When your child has a significant disability, do you waive your sanity to valiantly defend the normal life you once aspired to? On an ill-fated Christmas trip to the tropics, Margot helped me to finally wave a white flag to our new reality.
A prisoner of routine
Parents can become trapped at home in their child's routines if they do not know how to change them. Though science can show the way, the support needed is too often lacking. I describe creating a new routine that is fun and functional.
What was involved in getting one cavity filled? Many hours on the telephone, and 5 appointments with 3 different providers over 4 months. I am still getting billed more than a year later for obviously essential services!
A GoPro Hero of everyday fun
Some of the most incredible accomplishments of people with disabilities involve learning things everyone else takes for granted. A video captures how Margot has learned to have fun with us in the community, on trails, and at the water park.
Margot was born in 2000, and was placed in the neonatal intensive care unit almost immediately because of difficulties eating and breathing. She was later diagnosed with a variety of developmental and genetic conditions.
On Other Sites
Accessible Trail Adventures
In a blog for the Rails to Trails Conservancy, I draw on my experiences with Margot to help parents to plan accessible trail adventures - walking to hiking to biking to rollerblading - for people of all abilities.