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Parenting a child with pervasive developmental delay

Richard Holloway, PhD, associate dean for student affairs at the Medical College of Wisconsin, has an extraordinarily moving essay in today's new issue of Archives of Pediatrics & Adolescent Medicine about his 11-year-old daughter. Kendall has pervasive developmental delay, which makes it challenging to communicate with her, as Holloway explains:

Sometimes I wish I could just talk to her. I am ashamed to feel frustrated, but I do. I love her hugs, her smile, her presence, her energy, but I can't talk to her. Not the way people should, with give and take. It's not that there's no interaction, there is: the nonverbal kind. You never wonder what she's thinking, you know-it's written all over that beautiful, expressive face. I can talk to her in a way by saying, "How are you doing?" and she’ll respond, "Doing," or I’ll say, "Come on over here," and she’ll say, "Over here," as if the point were to imitate me. There are times I think to myself, She must be fooling. She could just catch herself and start talking about my day, her day, what she did, couldn't she? When I ask her, "How was school?" she will answer, "School." Echolalia, it's called: a major symptom of pervasive developmental delay, the diagnosis that has been placed on her. When she was little, we were concerned she would never speak because even her ability to imitate was lacking. Now, imitating is almost all she does, save for certain random outbursts of descriptive narrative. I came home a few days ago to her running up to me, excited, exclaiming, "Mommy dropped the pizza! It went all over!" followed by her nearly uncontrollable laughter until tears streamed down her cheeks and she dissolved into hiccups sitting cross-legged on the floor. Now that’s entertainment.

The whole essay is well worth reading.

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