Adventures with Margot to bring her a better life despite disability.

Adventures with Margot

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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About Margot

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.

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