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I am my son’s parent, but I am not a part of his culture and he is not part of mine.
I have not experienced life as a disabled person and he’s never been non-disabled.
I first became aware of this distinction when I heard Andrew Solomon, author of Far From the Tree: Parents, Children, and the Search for Identity, in a radio interview several years ago. In a parking lot, I listened to the end of the conversation having already reached my destination. I was stirred to my core, and everything suddenly made perfect sense.
After all the years we spent in therapy (where I experienced intense resistance without understanding why), it was finally clear to me.
As non-disabled parents, we often encounter the dissonance between wanting to support our children to live life to their potential and also ensuring we don’t dishonor them by expecting them to become someone they are not.
We are continually in a tug-of-war between remediating and allowing.
Between gently pushing, and lovingly resting.
It’s a unique role.
Parents of neurodivergent and disabled children have been taught our kids need to be fixed, so we do what we can to ensure the flourishing lives society expects of them—even though we don’t fully understand their culture.
As a result, neurodivergent and disabled children have learned they need to be more like others to be accepted.
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Continue reading my essays, activities, and case studies for supporting the education of disabled/chronically ill and neurodivergent children.
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