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January 06, 2009

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yanub

I agree that children should not be made into poster children for disability just because their parents are celebrities. In fact, I don't think they should be made into poster children at all.

I am curious now about Scientology's stance regrding brain disorders. They aren't being exactly, um, "clear" on the subject. But if it's true that they think it is a sign of a "degraded" condition, it's still no worse than McCarthy thinking her son is an "indigo child" and that quackery has "cured" him of autism.

Carleen Ibrahim

That the general public seem to think celebrities "owe" us information about their private lives is an issue that has bothered me for years, so I couldn't agree with you more than I do on this post.

The Travoltas, despite their celebrity status, have the same right to privacy that the rest of us enjoy. They owe us no disclosures of their son's illness(es), no justifications for their religious beliefs, and certainly no explanations for the decisions they made regarding their son's care!

It's tragic, to me, that in an insatiable desire to be "in the know," the public is interfering with the right of these parents to mourn the greatest loss they'll ever know. Now that is sad!

Lisa Moon

I completely agree that the Travoltas have the right to believe or to not believe in any diagnosis about Autism, much the same as I believe Jenny McCarthy has the right to talk about how alternative approaches have helped her son. Do I necessarily agree with either case? Well, no, not entirely.
Having recently begun reading some blogs written by adults with Autism and their amazing ability to explain their views in writing, I can't help but have my feelings grow about the Autistic minds not being 'wrong' or 'sick' or 'bad', but merely a difference.
Perhaps the Travoltas accepted any differences their son, Jett, had and took him as he came, so to speak. Perhaps Jenny McCarthy did find some real help for her son, Evan, in complementary medicine, removing some of the greater challenges with her son's behaviour... though it was my understanding that Evan was thought less to be 'cured' than to have 'cured' the more difficult behavious, allowing him to have a more 'normal life' with things like the ability to interact with his peers.
I may be way off, I have to admit I've not read a lot about either family, nor do I intend to.
My views have come about with my own experiences with my son, who began having behavioural problems and attentional difficulties in school. It seemed clear to me that there was more than one thing involved for him and I felt those issues should be addressed before considering medication. I spent a lot of time discovering how things like artificial food additives, toxic cleaning products and differnt types of teachers affected my son. And what I found helped him enough to feel better, behave more 'appropriately' and so on. Is he still and ADHD kind of kid? Sure, I see many of those qualities in him and many of them in many other people I know. But he turns 17 next week, is in grade 11 of a regular high school program (though that's not been without its difficulties) and just held his first 'real' job - a seasonal one in a clothing store.
Also, my best friend (an adult, lol) is someone who well fits the criteria for someone with Asperger Syndrome. When I was getting to know him (and was in school studying such things) I talked to him a great deal about my thoughts that persons who might be identified as being on the Autistic Spectrum might well just be a part of life, a difference like any other, even the evolution of the human mind in progress. He came to see how many things in his life made 'sense' with the descriptions of Asperger, and I made it clear it wasn't a suggestion of diagnosis (suggesting 'wrongness') but a way to describe variations.
When I was in school, I took a course on Applied Behavioural Analysis (ABA). I couldn't help but wonder about the behaviours it was meant to reduce, such as rocking or hand 'flapping'. Unless the behaviour was harmful to the child (we were talking about children at the time) I wondered if it was more for the benefit of those around the child, to make them more comfortable, or??? It just didn't quite sit right with me... but I do believe it has its place, as do many things.

My points, convoluted as though they may be now (sorry) is that parents often must try and do what they feel best for their child as they are the ones that know him/her best. Do we segregate, label and medicate everyone who is different? Well, seems to me too often the people declaring what is different and 'wrong' display, themselves, symptoms of 'different' brains, unable to see a broader view of things, only their own, narrow beliefs, and unwilling to consider other possibilities.

Regardless of my rambling, I hope Jett had a happy life (and I gather he was well loved and cared for) and that Evan experiences great happiness in his life.

beansprout67

Why is the situation of the Travoltas and their son Jett different from that of Michael Phelps? Back in Aug 08, you urged the swimmer to come forward and admit he had EDS or Marfan Syndrome, or both. Why is it ok for the Travoltas to keep certain personal details private but not Phelps?

One Sick Mother

Beansprout67,

The key difference is that Jett Travolta was a minor and any "outing" of his conditions should have been *his* choice to make, not his parents.

Micheal Phelps is an adult, and while I do wish he would make the choice to go public, I recognize that it is his choice. Here is a quote from my first piece on the subject.

"Now, Just because a person is a public figure and has a condition, it does not mean they have to be a spokesperson for that condition. It is not Micheal Phleps' job to be the spokesperson for Marfan or for anything else unless he chooses to do so. And I can't say I blame him for his choice not to do so..."

link to the full piece is here:
http://onesickmother.typepad.com/my_weblog/2008/08/missed-opportunities.html

My second piece on the subject was an analysis of Phelp's own words on the subject. HIS words from his bestselling book. He raised the subject himself and I claim the right question his wording.

And just to clarify: I didn't urge him to do anything: My exact words:

"Michael Phelps; I wish you could overcome your fear (of what?), stand up and be that role model. It would mean so much to so many people. You have no idea..."
Link:
http://onesickmother.typepad.com/my_weblog/2008/08/am-i-the-only-one-who-sees-it.html

Sue

I totally agree with you. You write very well. I hope today is a good one .

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