Q11: Adventures in the Mainstream

Q11) “But Ned refused to board our boat when the time came.  He insisted he wanted to ride back without me.

I was mad.  We were holding up the line of our shipmates, breaking the Palmer family rule Cathy and I have always tried to follow: don’t inflict your children on others.  Just as our fellow passengers were starting to respect Ned and enjoy his company, I didn’t want him suddenly to turn into an obstinate brat before their eyes.  But I didn’t want to force him into the boat, either, so I finally gave up and left him with the others on the jetty.  When I got back to the Endeavour, I sat and waited for him in the small hallway next to the platform where the Zodiacs unload.  He wasn’t on the next boat, or the three boats after that.  I started to get worried.  A staff member told me he was okay; he was waiting to come back with Tom Ritchie, the expedition leader. Finally Ned and Tom returned, just the two of them in the boat.  They’d gone on a Zodiac journey together, up a river near the jetty.  Ned was exuberant, because of the special expedition he’d gotten and because of his developing friendship with tom.  The fact that defiance of me had worked out very well had something to do with it, too.  And I let it go.” p. 26

The passage continues to explain that Tom had an eleven-year-old son with Down syndrome at home.  Palmer muses about the difference between people who have no connection with disability and those who do.  He talks about how he thinks meeting Ned affects each group.

“Then there are people like Tom, who are all too familiar with developmental disabilities.  He told me that his son in non-verbal, so they communicate through sign language.  I began to understand his interest in Ned.  My son has to be on e of the first developmentally disabled people to be a guest of Lindblad Expeditions…Ned’s classification of mental retardation is mild to moderate, whereas Tom’s son’s is probably severe to profound.  That’s a world of difference Tom may just be realizing.  I know exactly how he feels because I’ve felt it myself around kids with disabilities who are more “functional” than Ned.  I’ve felt it around regular kids too.  It’s a mixture of regret, anger, fascination, and encouragement. I hope Tom’s saying to himself that maybe his son can be a bit more like Ned in a few years.  And I hope he’s right.” p. 27

This section addresses the two important aspects of parenting an adult with an intellectual disability: 1) the feeling of always “representing” the group, and 2) the instinct to compare your child to others.  What do you think about “The Palmer family rule”? Do you feel pressure to have your child “speak” for the Down syndrome community in public?  How did you react to Palmer’s use of “mild to moderate” and “severe to profound”?  How do you keep from comparing your loved ones to others?

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