Nov 062007
 

At The Washington Post’s On Balance blog, a father writes about Samuel, his seven-year-old son with cerebral palsy. He writes this about parenting a child with a disability:

My experience is that parents of children with disabilities face a
different balancing act. One big struggle is balancing time spent
supporting a child with a disability vs. the family’s other child(ren).
Others include marshaling the time, energy and financial resources
needed to manage a child’s medical care and therapy, and the scarce
resources left for yourself, your relationship with your spouse, and
your work.

I think about my own family and how the gravity well of my disability shaped and tempered our dynamics. I consumed a lot of of my parents’ time and energy, especially during those years when it seemed like I was getting sick every other week. And my siblings sometimes had to assume the role of caregiver or personal assistant, particularly my brother. We used to play computer games that I didn’t have the dexterity to play independently (oh, Wing Commander II, how I miss your awesomeness). And when I wanted to play and he didn’t, my petulant rages would eclipse anything that any of those whiners My Super Sweet Sixteen could muster.

I have good, close relationships with my parents and siblings, in large part because I learned that I am not, in fact, the center of the universe. Now, when I see other families coddling or kowtowing to their kids with disabilities, I wince a little bit. We may look innocent, but many of us have an almost preternatural ability to bend minds to our will.

  One Response to “Special Treatment”

  1. This is of utmost importance! I think you help parents and disabled children, teens, grownups, and their “normal” siblings.
    Thanks for your honesty Marc
    Mieke.

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