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 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.
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.
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!
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!
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.
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?
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.
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.
On Other Sites
Voices in my head
So many implementation gaps arise because parents, front-line professionals, researchers, and program leaders have different ideas and priorities. I describe juggling all these different perspectives in mediating Margot's care.