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Cordelia Is 7 Yrs. Old: One Health Care Story

Cordelia Is 7 Yrs. Old: One Health Care Story
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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.

Unpredictable  meltdowns

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.

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All photos from Christina McNemey

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33 comments

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1:42PM PDT on Jul 16, 2012

My daughter has cerebral paisley and I had to work extra hour as a waitress to cover her care. When I started working for a retirement home that had insurance I paid for the full family coverage but none of my daughter's care was covered due to pre-existing condition even well child care. Thank god for Shriners and the school system. Your health should not be dependant on a for-profit system because you will lose every time.

7:25AM PDT on Jun 30, 2012

Thank you Marie. That's about as clear a statement as I've heard!

11:51PM PDT on Jun 29, 2012

Health Insurance is NOT Health care. US needs to understand the difference.

10:23PM PDT on Jun 29, 2012

Thanks.

8:43PM PDT on Jun 29, 2012

Thanks for the post.

5:45PM PDT on Jun 29, 2012

Thanks

4:43PM PDT on Jun 29, 2012

Such a pecious little girl. I hope and pray she gets everything she needs.

3:42PM PDT on Jun 29, 2012

Affordable comprehensive healthcare is necessary for all today and a legacy for future generations.

It is too bad that the Republican/Teabagger naysayers are still hard and fast at it telling distortions and outright lies. Keep in mind that if the Republican/Teabaggers get into office, they have committed to repealing the ACA. That would be a tragedy of monumental proportions, and yet another reason to hold them in contempt of the American People --- would there be such a statute!

3:41PM PDT on Jun 29, 2012

Health care should be free everywhere..but in the real world,Governments don't give a damn,,

3:11PM PDT on Jun 29, 2012

The ACA will cover all people with preexisting conditions by 2014 and is supposed to cover kids with preexisting conditions now. However, the level and type of benefits will be set by review boards. These boards will probably be made up of the same folks who now determine what benefits the health insurance policies now pay. It is my fear as well as the fear of many others that because premiums will not rise as fast as health care costs these benefits will become less and less generous as time goes on. I am very sympathetic but Cordelia's Mom should not assume that when ACA becomes fully implemented Cordelia will get better coverage. If anything, just the opposite, unfortunately.

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