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• Saturday, February 10, 2007 09:06 PM

  She has siblings who could care for her

  But the size limitation would still be a problem. As one who has had to help care through childhood for a functioning Kanner's Syndrome victim (he died of a heart attack in his mid 20s), I find the "I refuse to belive the size is an issue" person naive. It is harsher and more taxing than you realize. MY mother could not physically do it after my brother and I left home for jobs. We had him in a good group home, but still, between visits, IEP, and worrying about who worked there, the care did not cease. We took him out, especially when my brother and I came home for visits. There were NO jobs in my specialty in that area. Period. How much of my life and well being was I to sacrifice for my brother?

  And that is the question. The naysayers is demanding not just of the parents (for whom it is a choice) but the siblings (for whom it is NOT a choice)a massive sacrifice of life and future. Was I to spend my life at home, supervising and cleaning behind a man in his 20s with a 9 month old brain? At what point to the other siblings (Ashley HAS siblings) have a right to their parents care, attention?

  It is the siblings who really pay this price. Ashley's needs have to be balanced against her parents AND her siblings. She is mentally three months old, with NO motor control. She will never be autonomous, she will never live alone, she will never control her own urination and feces, she will NEVER enjoy and of these "RIGHTS" of sexuality and autonomy, even WITHOUT these surgeries. Her parents and her siblings will be able to care for her, and moniter her care, in safer environments.

  It's ironic. The siblings are the afterthought here, even though they will presumable take over the care, especially if she is institutionalized. They will navigate the labrinth of insurance, inheritance, permissions and government regulations. They will face the burden and guilt of institutional care, or the guilt of feeling like they neglect spouse and children of caring for sibling at home. These are far harder, nuanced choices than portrayed here.

  I will not judge this family. I've been there. I've had to make sacrifices I did not choose for my family and brother's sake. I lost a normal childhood to Kanner's.

  So if you are NOT a direct caregiver, you really have no clue about the sacrifice. You have to do it, day in, day out. You have to face the embarrassment of certain public acting out. You have to know the fear of "losing" your child (for they are children; they do not have the mind or anything near the self-protective impulses of a 1 year old), having the police find them and shoot them for not following directions (the bridge shooting in New Orleans is one of my still-occuring nightmares). Have you have to follow a naked adult male down a street who outweighs you by 150 lbs to grab him, guide him home, and pray no one calls the police or mistakes him for a rapist? Have you have to explain this to a possible significant other? Have you ever cleaned feces off a wall? Chained a refridgerator?

  You focus on Ahsley's non-existant autonomy. She has no autonomy; the reality is that she is damn lucky to be in the situation she is now. Foster care is an awful outome in a case like this, and far too common. Focus on the siblings' essential loss of their parents' time and childhood instead. This is a far harder burden than you understand. To blithely say it is about the parents' "convenience" is so far wrong I have no words to really begin to explain it to you.

  —domini Read domini's other letters
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