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Cathrine, I don't know that they 'pretended nothing was wrong.' I think they just refused to discuss Jett with the media. There is a big difference there.
I think if any of us had lived life in the spotlight, we'd have a better idea of what it's like to lose your privacy, to be blackmailed and stalked and to have photographers that follow you everywhere.
I know you've mentioned your child having physical issues, but from what I have understood you to say is that they are related to his health (heart, maybe?) and not his personality. In the case of an autistic individual, the attention that would have been brought into his life by 'outing' him on a national scale could have adversely impacted him. I've worked with an autistic boy at church who is very high functioning in some regards, but he has meltdowns when the spotlight is on him and he feels like he is under scrutiny. He had created a lego sculpture to enter in a contest one time, and a lego fell off right before it was to be judged, and he was so overwhelmed that he went running from the room and it took quite a feat to get him to come out again. The whole 'I'm in public and everybody is expecting things of me' scene was very detrimental to his sense of peace that day.
I have to think that it's never a good idea to put an autistic child in a position to be the focus of lots of people and attention.... and that is exactly what would have happened to Jett Travolta.
With your son's issue (assuming my memory is correct about it being a heart condition), being in the public eye wouldn't exacerbate his condition. But a child with a cognitive disorder should never be put in a position that would cause him or her to have any sort of a setback... and I think going public could very well have put him in that position 24/7.
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