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This is a really good read:
A Life Beyond Reason
A Life Beyond Reason
My son, August, has a number of quirks that distinguish him from the typically developing 10-year-old. He lives with cerebral palsy, is a spastic quadriplegic, has cortical visual impairment (meaning he is legally blind), is completely nonverbal and cognitively disabled, has a microcephalic head, and must wear a diaper. Moreover, he is immobile—he can't crawl or scoot around or hold himself up or even sit in a chair without being strapped in it. If someone were to put him on the floor and leave him there, he would be in the same location hours later, give or take a foot.
At home, in the eyes of my wife, Ilene; our 7-year-old daughter, Clio; and me, he seems merely a little eccentric, possessor of a few odd quirks, as I said. We don't think of him as being different; he is August, just another member of an already quirky family. Although he cannot play with his sister, she loves him. Without being prompted, she recently made pipe-cleaner wheelchairs for her dolls and rendered her wooden doll house ADA-compliant by retrofitting it with ramps. Now the dolls wheel freely in and out. For family bike rides, we have a specially built bicycle with a Tumble Forms chair attached to the front for him to ride in. I feed August his meals (he cannot feed himself), change his diapers, place him in the supersize jogger when I go running, and put him to bed. He and I have a good relationship: He laughs at my attempts at humor, which consist of making odd sounds or putting him face-up on the rug, holding his feet and legs up high, and rocking him swiftly back and forth. He seems to enjoy my company, and I most certainly enjoy his.
At home, in the eyes of my wife, Ilene; our 7-year-old daughter, Clio; and me, he seems merely a little eccentric, possessor of a few odd quirks, as I said. We don't think of him as being different; he is August, just another member of an already quirky family. Although he cannot play with his sister, she loves him. Without being prompted, she recently made pipe-cleaner wheelchairs for her dolls and rendered her wooden doll house ADA-compliant by retrofitting it with ramps. Now the dolls wheel freely in and out. For family bike rides, we have a specially built bicycle with a Tumble Forms chair attached to the front for him to ride in. I feed August his meals (he cannot feed himself), change his diapers, place him in the supersize jogger when I go running, and put him to bed. He and I have a good relationship: He laughs at my attempts at humor, which consist of making odd sounds or putting him face-up on the rug, holding his feet and legs up high, and rocking him swiftly back and forth. He seems to enjoy my company, and I most certainly enjoy his.
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