Well, at least we’re getting an object lesson on the nature of hatred and insanity...
http://specialchildren.about.com/b/2009/01/07/what-people-think-they-know-about-jett-travolta.htm
What People Think They Know About Jett Travolta
Wednesday January 7, 2009
I've been reading comments lately on other blogs about the death of John Travolta's son, Jett (pictured with his dad at right), and Jett's alleged autism. The speculation that Jett is autistic, despite his parents' refusal to confirm it, has been going on for a while, and the 16-year-old's death from a seizure has brought it forth anew, with an extra helping of blame and shame.
As I see commenter after commenter state with certainty that this young man they've seen only in photos and TV tapes is autistic, I have to wonder: Isn't this the sort of thing we complain about when people do it to us? When someone pretends to know all about our kid because they've heard talk or spent a couple of minutes watching us, don't we tell them where they can put their judgments?
I look at photos of Jett Travolta, the ones so many folks see autism in, and I can't help but think of my own son, who has a similar appearance. People who've seen him out in public have tagged him as autistic, too, with his flapping hands and jumping and rocking and bad eye contact. He's had a couple of seizures, which, last I checked, don't prove he has autism either. His true diagnosis is one that includes the behaviors and the seizures but excludes some of the autism factors that are less easy to spot. That's the reason we have to pay specialists for these diagnoses instead of just getting the neighbor lady to sign off.
We all know, don't we, that appearances and hearsay and the things we think we know about somebody else's child are not valid diagnostic tools. Don't we? Well enough when it's aimed at us, I guess. But the temptation to apply our knowledge to the shortcomings of others is powerful. We can say we're concerned for the child, or the family, or the profile of the disability that means so much to us, but in the end, we're no better than the teacher or the caseworker or the gossip who knows everything about us based on not much.
To diagnose another person's child, particularly a child you know only through the media, is presumptuous. To jump from there to assuming that the child has not been afforded appropriate treatment -- "appropriate treatment" being a subject of plentiful contention in the autism community all by itself -- to assuming that the seizure that killed him was related to the supposed lack of treatment, is a whole lot of jumping. Flap your hands when you jump like that, and somebody's going to diagnose you with autism.
The fact that the Travoltas are Scientologists seems to give critics carte blanche to suspect and accuse them. I don't know about Scientology, but in my own faith, there's a belief in the wisdom of "Judge not, lest ye be judged." As special-needs parents, we should know better than anybody how bad that judging feels, and how bad outsiders are at getting our families right. Surely we could give even the rich and famous among us a little benefit of the doubt.
I agree that no one can make the diagnosis of autism or not for Jett Travolta. At this point, I think it’s really a moot point anyway. The seizure, or the fall that resulted from the seizure, is what took his life, and that is not something that anyone could have predicted or prevented. As for treatment, I believe it was reported that he had been on and off different seizure medications due to side effects, so it seems extremely unfair to judge his parents and assume that they didn’t try to help him. If you take seizure meds yourself or know someone who does, then you probably are aware that there can be significant adverse effects. Moreover, if you have any knowledge or experience of seizures, then you probably also know that they are extremely unpredictable and that individuals can go years without having an episode, and then, BAM, have a grand mal seizure. To your point, Terri, it is unfair for any of us to judge the Travoltas.
The speculation surrounding the death Jett Travolta has been so unfair. My sister had a seizure disorder for five years prior to her death at age 20. Those five years were full of medication changes and periods of being on and off treatment while trying to figure things out. When she died, after falling in a position which obstructed her airway while having a seizure (at a time when she was on medication), it was a huge shock and nothing anybody could have been prepared for. ****************************************
Thank you for so putting into words what I have been thinking about since the first new stories about this tragedy appeared. To review the facts to date:
1. We do not know what Jett Travolta’s diagnosis is or was (nor should we - he isn’t famous, his parents are),.
2. We don’t know what treatments he received or didn’t receive and have no criteria to judge if they were adequate since we don’t have any facts.
3. We don’t know if his seizures were untreated or undertreated but based on my experience, the treatments for seizures is complex, and second guessing based on media reports is ridiculous.
4. In all photos that I have seem of him, he appeared to be happy, loved and surrounded by family.
5. Just because he had special needs, he is NOT public property and public speculation about treatments, diagnoses etc. is a waste of time and insulting to all parents who try to do their best by their children with special needs.