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Sunday, Nov 8, 2009
... I have to wonder how many of the "judge not" types posting here ever had a negative opinion of gay people or families with gay parents or even voted to enshrine anti-gay bigotry and anti-family laws into their state's constitution.
Judge not? Are you kidding? That's the great American pastime and Christians are the hometeam.
Rights of an individual. Some would think that rights only apply to those who are intellectually cognizant. This is so very wrong. Rights are most important in protecting those who do not have power, and control over their own destiny.
I see a lot of prognosticating the future. "She will never walk"..."She will have the brain of a 3 year old forever"..."she will mature and be molested." I didn't realize the medicine was so definate, and the future so well placed.
I could have sworn that we are dealing with a medical profession that is constantly evolving, reinventing, and dropping off bad practices. Electric shock treatment was the norm in the past, practiced on helpless (in many but not all cases) individuals by well meaning guardians and doctors. The question of future care and of the potential for future molestation should have never entered the equation. You wouldn't allow a parent to neuter a normal child for fear of future molestation.
These parents were saddled with a hard responsibility. They have failed in that responsibility. Shame on the medical profession for not standing hard against this. This goes beyond a medical ethics issue, this is criminal behavior.
I have only seen one other parent of a child with a severe disability respond (I think we are mostly keeping our collective thoughts to ourselves, and getting yet another taste of how the world of "normals" perceives us, our kids and the appearance of our lives), but will throw in my two cents' worth.
Our lives are more difficult than you can imagine. We are depressed, emotionally exhausted, overworked, frustrated by the lack of resources that can provide the training, education, recreational opportunities, and transitions to adult life for our kids; we get stared at when we try to be part of the rest of the world (think your 2-year-old having a tantrum is embarrassing? Try having a raging 10-year-old in the Target, with the humiliation that attends attempting to remove said child, while being bruised and having your glasses broken on your own face). And, when you have a child who injures herself, as ours has done and occasionally still does, you get visits from child protective services and the police, and copious notes in doctor's files. Her medical and school records literally fill a 4-drawer filing cabinet. For 5 years, I read nothing that wasn't devoted to autism and speech pathology. We haven't been on a date in 2 years, and our sex life is nonexistant. Our older daughter is a wonderful sibling, and has to listen to the freakin' morons at church (which once meant something to me, but ceased to when we were asked to not bring our younger daughter there anymore because she disturbed the service) tell her that having a special needs sibling is a blessing, and that it's character-building (she has already told some old blue-haired bat that she has plenty of character, and that God can keep his blessings to himself, and leave her sister alone--I'm proud!).
This is what comprises our lives. Yet, I love my daughter, and fear the day that we won't be able to care for her anymore, either because of her health issues or our aging. I can't judge the parents, and my guess is they have had plenty of time to explore any other options they had, and they arrived at the one that worked for them. It wouldn't be my decision, but I'm not in the same situation.
Two other things: (1) please spell "retarded" correctly (it's not "retarted", and in an otherwise articulate response, it was glaring), and (2) the nickname thing--good Lord, we call our daughter our little mermaid, because she loves water and makes dolphin sounds instead of talking.
My prayers and thoughts to any other parents out there who have a child with one or more disabilities. Our lives are not like everyone else's, we don't get the same rewards as the vast majority of the other parents, yet we are expected to handle more and still remain saints, so that others can beam their little smiles that mean "thank God I'm not you!" and move on. I also think about those responders who don't have kids now, but may be so lucky later on--won't it come as a shock to you, should you have a child with problems that others don't understand, to recall what you wrote today?
I was rendered quite aghast at the quote by the one doctor that, "[s]he's a human being and with that comes all the same rights as you or I have to experience normal development and sexual pleasure." She's never going to mature sufficiently to be able to *consent* to sex. She's never even going to develop sufficiently to be able to masturbate and experience pleasure that way. The only sexual pleasure one could possibly theorize she is going to experience is during some sort of sexual assault.
Complaining about the loss of her right to enjoy sexual pleasure is akin to complaining about the loss of her right to dance - it's just something that's never going to happen, EVER, thanks to her condition.
I challange all critics to do just one thing before they cast another stone on this family. Spend a little time in a pediatric nursing home. Yes, folks, we have them and I work in one.
At least this family cares for their daughter. We have children whose family hasn't shown up in years to visit their offspring. We even have a couple kids up for adoption. One of them is near normal in mental capabilities. If you care so much then there is more you can do. Come read to a child who may not understand what you are saying but loves that someone has time to stop and pay attention to them. The staff is far too busy to give them more than a couple minutes here and there. Please. Step up to the plate. Put all this concern to some constructive use. A pediatric nursing home in your state would love to have you.
Much of the initial coverage about Fort Hood turned out to be wrong. Is there anything wrong with that?
The accountability imposed by another country for the CIA's kidnapping and torture reveals much about our own.
Fox News' morning show plays to type, talking about whether Muslims in the Army should face "special debriefings"
The survivor and author is upset about comparisons some on the right are making to genocide
Once seen as a lunatic fringe, reactionary anti-women groups are courting respectability
Salon headlines in your mailbox
