Friday night’s Larry King Live discussion centered around a family who had surgical and hormonal treatment for their daughter, Ashley, now 9 years old, to basically keep her as a child. She has been referred to as the “pillow angel”. Basically, if I understand it, she was given hormones to stunt her growth. Her parents will be able to lift her longer because of this procedure. Additionally she was given a hysterectomy so that she will not experience bleeding or painful cramps from menses and had her breasts removed so that they will not grow normally. Apparently, the parents believed that she would be more comfortable without experiencing menstruation and developing breasts.
A search on Google displayed over a million sites that comment on this controversy. Here are two for Times articles: Part 1 and Part 2.
I have read many of them and also had a discussion on our Yahoo group. The more I thought about it, the more I thought maybe instead of taking sides on the controversy we should be asking the question about why parents have to make such difficult decisions.
I do want to be clear that I am not advocating for this radical treatment or necessarily agreeing with it. Joni Eareckson Tada made the comment on the King show that it was alarming that this kind of treatment could set precedents. That alarms me greatly. Our history demonstrates that treatment can be universal. In the past all people with special needs be sterilized to reduce the incidence of mental retardation. Also many people were locked up in large institutions that could have functioned successfully in the community.
We have to ask ourselves if there was adequate resources and support for parents of complex children and adults would the parents have felt they needed this treatment to assure they could keep Ashley in their care for as long as possible.
Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
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Everything Upside Down!
13 years ago
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I just left a link to an article and the parent's blog on my daughter Ivey's blog. More than likely we, as parents, will be raising a profound complex child, this article really hit a nerve. The choices that parents are forced to make can be profound and unyielding in the eyes of an outsider. Knowing how difficult it is to move my 10pound 9 month old around with all of her equipment, I can see both sides of the saga. I will say that Ashley's parents are very brave. Of all the path's that I can envision in my daughter's future, this was not even a flicker, until now. What if it is hard to move my daughter as she ages, how will we as a family keep her with us? She is blind and mentally disabled, where will that leave her in her future?
That's a really good question. I do not think parents are supported because the support (in my view) begins with tolerance and acceptance. Then, access and accomodation would be second nature. Stigma might be a thing of the past.
However, someone did mention in an argument I read over the past weeks, that in light of better and better technology and equipment to assist people like Ashley, that stunting her growth was unnecessary.
I have four friends with kids with CP and other disabilities. I have seen the equipment, facilities, beds, and tech. equipment that they can use. In discussing the treatment with the parents, this was not a viable option.
All I know, is that if it was us, we would never have done this. There is always hope, and they have just removed that for their child. No hope of being an adult?
Child autism is on the increase, we spend all our days living it, and we as parents will move heaven and earth to help our son, no matter what it costs.
Let's just focus on one simple fact: no one loves Ashley more than her parents. All the hypocrites who think they can do better -- shut up, and go help others. Yep, it's always easier to criticize others! I'm a physician, and people admit to me all the time that they don't want to be in medical field because they don't want the responsibility. I always admire parents who take on the responsibility to care for their children with special needs. Regarding the potential for abuse, PLEASE, judges abuse their power everyday. I can't believe that people are still so naive to think that court order makes an action ethical. Court merely legalizes; we, as parents, shoulder the burden of ethics. Do you think that if a judge were to make a ruling, he/she would say, "you didn't act in Ashley's best interest, so I'm going to take better care of her" afterwards? Ten years later, you WILL see Ashley's parents continue to love her even after the world minimizes their love today... when we should have supported and admired them for giving so much love.
I always feel that people(ALL people, those with special needs children too) are too quick to judge others on what they themselves would or wouldn't do. But we don't live Ashley's family's life and cannot imagine what a heartbreaking decision this must have been for them. There is a wonderful and profound native indian saying - 'Don't judge a man until you've walked in his moccasins' How true is that!
The family will need support and love from others not condemnation. Maybe we all need to learn to love and not judge.
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