claire5There is much to learn from Claire. She eloquently yet forcefully articulates the challenges and biases she faces on a daily basis while caring for her daughter, Sophie, who has multiple severe disabilities. Visit her blog for further observations, commentary and dialogue.

Parenting a child with severe disabilities

00:00 discusses hiring caregivers
07:46 talks about hypervigilant parenting
11:13 discusses exposing children to ‘age-appropriate’ toys and items
13:18 discusses issues with dressing people with severe disabilities
16:04 contemplates the value of some medical interventions
19:55 discusses social interactions with people with severe disabilities
22:08 comments on aesthetics of disability
23:20 comments on parents’ desires to prove capability
25:12 recognizes accommodation needs can be varied
26:19 comments on the tendency to over-emphasize cognitive ability

A call to action for parents

00:00 discusses the need for new parents to have mentors
11:41 believes parents should align with disability activists


  1. Carolyn Murray
    February 21, 2014

    Claire is incredibly articulate and insightful. I’ve been parenting a severely disabled young man for 15 years, and her ideas about mentoring are spot on. My early years with my son would have been far more difficult without the online support I found, but it would have been so nice to have a local support network with older, more experienced parents to help me navigate.

    Even now, I find I need the help of other women who have walked through the teenage to adulthood years before me. More specifically, people with former spouses who have to deal with compromise and communication when opinions and desires are at odds. I lack severely in having mentors for that sticky wicket.

    Thank you for the wonderful videos, Jennifer and Claire. They’re a great service for many of us.

    • Claire
      February 23, 2014

      Thanks Carolyn. And, it just so happens that I am currently experiencing the “former spouse” and decision making issues. Like you say…sticky wicket. 😉


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