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• Friday, February 9, 2007 10:09 PM

  I helped care for my severely Kanner's Syndrome brother until he died at age 26.

  The parents are right here. The people pontificating about sexuality, autonomy, and mutilation have never been caregivers. The idiot from the caregivers' consortium did not tell you that while his/her organization has x-number of dollars, most people in this situation will STILL not be able to afford comprehensive care without family help. Until you have done this, day in, day out, AND really dealt with the sexuality of someone with a 9 month old brain (but a 16, 19, 20, 25 year old body) you not only don't know what you are talking about, you sound crazy (or stupid) to those who do.

  Keeping her care in the family (first parents, then siblings) is the first line of preventing abuse. Keeping her small enough for the post parental care to be in a pediatric setting is a second line. There is no guaratee, but it makes a difference. If she grows bigger, she will have to be strapped into a wheel chair, with straps across the breasts. That's the reason for the removal- they will be hurt by the straps, backpain, and without motor control (she HAS NO MOTOR CONTROL) issues of breast cancer, etc are huge.

  She will not be understanding or acting on any sexuality, so drop that. The ones who just don't understand the problem with menses are being deliberately obtuse.

  This is not a "convenience". This is a necessity. People just don't get it. You can not change diapers, etc on someone over a certain weight and height at home without contraptions, and those things break. She's a dead weight. As they get older and frailer, how will they be able to handle a 110+ young woman?

  She isn't a pet. She is human. But I balance her needs against those of her caregivers' so that the caregivers CAN continue to take care of her.

  Stop projecting yourself into the situation, and focus on HER.

  I agree that it says something fundamentally wrong about the US that they HAVE to think about this. Lip service to "family values" and "all life is sacred" (check out Crunchy Con and his diatribe against Down's Syndrome screens- and against parents who presumable abort severely disabled kids. The same holier than thou ignorance you see here, wrapped up in conservative "God sent you this burden" ideology and NO offers to help caregive or pay for care.)

  I pray for the family. They will need it.

  —domini Read domini's other letters
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