By Christina McNemey at her blog A Mommy Story 3 years ago, describing one family’s need for the bill upheld today.
Meet Cordelia, my single most important reason for health care reform:
She’s four years old — nearly five — blond, blue-eyed, very tall, and exceptionally healthy. She rarely gets sick, and when she does it is minor and doesn’t require a trip to the doctor. (Or massive, when she breaks her tooth in half.) She usually only sees the doctor once a year for her annual check-up.
But she also is on the autism spectrum. PDD-NOS to be precise. As a result of this, she has endured an uphill battle against herself. Two years ago, she was a different child. She spent her days lost inside herself, studying the curve of a toy car wheel, counting and lining up blocks over and over for an hour, and rarely making eye contact with those around her. Her speech was scripted, and while she talked a lot, it was often quoting entire episodes of Dora the Explorer. She’d run laps in the living room each evening, flapping her arms absentmindedly, oblivious to anything going on around her as she ran, jumped, and flapped. You couldn’t break her pattern.
When she did answer questions, it had to be factual answers that she could draw from scripts. Never could she answer the question, “How are you feeling?” because the truth was, she didn’t know. She had little to no sense of imaginative play. When we put her in a summer camp, she looked right through other children as if they weren’t even on the same plane of existence as her. Kids would say hi, and she completely ignored them. Adults fared only slightly better.
Worst of all, the slightest change to her equilibrium sent her into violent meltdowns, often made up of primal shrieking, writhing on the floor, repeating a phrase over and over, banging her head into something until she bled, unusual demonstrations of strength, and no recognition of anything around her at that time. Her eyes looked glassy, as if all higher functioning in her brain was shut off, and trying to soothe her or calm her down usually made it worse. This would go on for 15-40 minutes at a time. The worst of these meltdowns terrified me, as I always worried that she might never come out of it.
What set off these meltdowns? Switching activities. Touching something gooey. Different bedsheets. Putting her bare feet in the grass. A child singing. Leaving the house. The wind changing directions. A Buddhist monk in Tibet dropping his chopstick on a pillow. Nearlyanything would trigger it, and we’d all suffer from these meltdowns on a regular, daily basis. Sometimes more than once a day. Sometimes more than once an hour.
All photos from Christina McNemey
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