Anonymous | Jan 5, 2007

I have an Autistic child and I say love your child for who they are. You need to let them grow up and take the challenges day by day. Give them the love they need and be happy they are part of your life.

Ric Swierat | Jan 6, 2007

As I understand the issue, the parents (with their physician's support and guidance) want to keep
their daughter the size of a child, for a number of "reasons":

1. The child will never grow up. She has some kind of neurological impairment so that she is not mobile and doesn't speak. She seems to require total care.

2. The parents intend to care for her at home, but don't feel that they will be able to do so as they get older. If she kept "smaller", they will be able to manage her.

3. The parents feel that as long as she has the capacity of an infant, then she should be seen and look like an infant.

This seems to be the line of reasoning in the story I heard last night. The issue of "re-engineering" of people with disabilities is not new, of course. A few years ago, there was a movement among some families of people with Down's to provide plastic surgery for their son/daughter to
alter their "eyes' to not look as pronounced and or narrow.

Of course, there is a great deal of discussion in the community of Autism about the use of vitamin therapy, etc.

From my perspective, the question relates to the precedent....how this treatment, decision and approach is used to support something very radical and different about the role guardians and society play in controlling situations that do not fit a certain standard. And further, how do we decide who is "disabled" or not of value in our society to receive altering treatments. Do we decide we want a "super society" so that all people below a certain capacity are altered for the convenience of society?
Does this also apply to racial decisions? mental health
decisions? belligerent societies? (like terrorists?) The implications are immense.

The only saving grace to this story is that the family is committed to taking care of their daughter. I think they need counseling, and maybe a support system that gives them a different view point to their daughter's future life.

Sheryl Frishman | Jan 6, 2007

This story has been so bothersome to me since I have heard about it - my 1st inclination as an advocate and attorney for people with developmental disabilities and their families is to say that these parents and physicians that performed these procedures are for lack of a better word just horrible and have no right to do this. HOWEVER, as I have been thinking about this and as a parent, and as a parent of a child with a developmental disabilty I am cautious and still have not been able to completely fault these people. I still need to think about it further - However - I will quote a great scholar (my mom) who has always told me never to be to "quick to judge a person until you have walked in their shoes". I will close my comments with that at this time and will write more as I come to terms with this myself.

Roberta Nickelsen | Jan 8, 2007

I am the parent of a similar child who is now almost 18. In an age where almost any physical attribute can be manipulated by computer or medicine, we are consumed by the need to control. We have all kinds of prenatal testing to make sure our fetus is "perfect", we straighten teeth if they are slightly crooked. Etc. etc.

When we faced the decision about whether to "treat" precocious puberty or not, our wise pediatrician asked the right questions, and those questions had nothing to do with our level of discomfort, but our daughter's best interest. To limit this child's size because she is not comfortable sitting for long periods in a wheelchair makes you wonder why positioning isn't in her Nursing Care Plan.

With our daughter, we addressed what needed to be addressed, and that involved a lot of surgeries. Protecting her dignity and individuality were as important to us as her health and comfort. However, the nursing shortage is a reality for families who care for fragile children at home. Until that horrible situation is addressed, parents like these well meaning folks will continue to struggle to make care at home easier.

Anonymous | Jan 9, 2007

I am very distressed by this story. Of course, we understand the challenges faced by guardians caring for people with severe disabilities. But as Roberta says, above, the dignity and individuality of people with disabilities should be foremost. I am finding it difficult to understand how such radical treatments can be lawful.

Anonymous | Jan 25, 2007

One thing I'd like for us to remember is that families are unique and they do things differently from one family to the next and what one family does might not work at all for the next. With that said I don't agree with altering anyone physically or otherwise whether they are typical or developmentally disabled. What we have been presented with through this family's decision are ethical and moral situations, not legal ones(we do after all circumcise our newborn boys without asking,I'm sure if we asked they surely wouldn't approve of that). My main concern is how do we work today so that our children, siblings and future generations who are disabled, that their families have all the tools to properly care for their disabled loved ones even after they are gone no matter what their race, society status, religion, nothing just that they can offer a dignified life to their loved ones. How about working on cures for the various things that cause developmental delays. What this family has done is what they considered to be the best outcome for their child even after they are dead. How many of us wouldn't want that assurance today so that we can rest at peace tomorrow?

Anonymous | Feb 25, 2007

I had dinner with friends last night who have a severely disabled child. They are getting older and more weary and so is their son getting heavier and heavier. The larger he gets the less these parents can manage him and may need outside help. If his growth were restricted, they could continue as a family without sending their child to live somewhere else with workers who can lift him when he becomes man size instead of boy size.

Adnil | Mar 18, 2007

After reading about this family and their situation for the first time. then reading the well thought out comments that several informed and sheepishly over-educated people, who maybe are trying to sound intelligent and sophisticated, made. Although there is an attempt to focus our ideas and comments toward the descions this family has made to alter their disabled child's physical state, I question the sincerety of people that make a conscious, educated and informed choice to be overly concerned with the most appropriate manner and best PC use of terms and concepts. Viewing this forum as a microcosim of our "free-thinking" society's version of share your true, open and honest opinion of another human beings' diplorable, distasteful, and flat out freakishly inhumane and a plain old bad idea. The fact that NO ONE really owns up to the fact that at first glance, the idea of this turned your stomach. As a fellow human, how could it not make you feel a little nasuated? it must have. BUT this forum allows us to see, and confirm the sad truth about our "collective" idea of a civilized society. To me, this screams that we, as humans, are a pathetic-can't make up my own mind about it, on the fence, grey, fuzzy,non-specific, middle of the road, passive-aggressive