I found out yesterday morning that not only did the Travolta’s (see previous post HERE) know of Jett’s autism; they refused to treat him because of their chosen religion; Christian Scientology. This is where my anger comes into play here. I get so damn mad when the parents who have the means to help their child using therapies not traditionally covered by insurance of any kind just don’t for whatever reason. There is a family like that who has a son at the Vista school. It got to me so bad that I had to end the friendship with this boys mother; for fear of what I knew I was going to say if I didn’t.
I think part of the problem is we parents are told when our kids are diagnosed that the only thing that works is ABA. Hell, when JR was diagnosed in 2000 we weren’t even told that much. Today’s parents of newly diagnosed children certainly aren’t being told about the benefits of “non-traditional” medicine. But still, as a parent it is our duty to help our children no matter what. I leave no stone unturned when it comes to things that may aid JR. Of course I won’t try everything I read about because it’s either too off the wall for me or may present a danger to him. There are certain things I would never do to JR in order to recover him. He’s recovering very nicely with what he is taking and I won’t do anything that may reverse the recovery so far.
I do believe that if a religious belief is what kept the Travoltas fron acknowledging their son’s autism and treating it then it’s time to look elsewhere for comfort and peace in their daily lives. Obviously Christian Scientology is a determent that was the root cause of Jett Travolta’s death. The remaining Travoltas should back away and turn tail and RUN!!!!
And I find it very hypocritical of the church of scientology to rely on the area of medicine; in this case psychiatry; for their definition of what autism is. The membership of scientology profess not to even believe in psychiatry and yet instead of investigating what autism really is, they rely on psychiatry to define autism. The membership further states that medical treatment for illness, disease and trauma is fine. IF that truly is what scientologists believe then autism would be considered an illness and could be medically treated.
I am not speaking exclusively of supplements here. Just therapies that cost a small fortune. An example is HBOT (hyperbaric oxygen therapy). The cost of renting an HBOT chamber can be very expensive. Costs of having treatments in an HBOT center is also not cheap. And it isn’t covered by insurance either because HBOT isn’t FDA approved for autism. And those of us who understand what that means understands WHY the FDA hasn’t approved HBOT for autism YET. HERE is a link to costs of therapy sessions by state.
The HBOT scenario is only one example of the financial cost of autism. The financial and ethical consequences is all this post is to be about. For my family; personally we struggle; like most people I suspect. We may struggle a little more than some though, we don’t own our home, our car is 15 years old and the reverse in the transmission is slipping. I pray every time I get in the car that it lasts until next February. February is when we get our income tax refund. We are frequently “robbing Peter to pay Paul” with our regular utilities and cell phones. We don’t own a credit card of any kind and we never will. We learned to hard way how much of a trap they are. If it wouldn’t have been for the National Autism Association’s Helping Hand fund and the county Mental Health/Mental Retardation family driven funds we wouldn’t be able to afford JR’s extensive supplement list.
I didn’t divulge the above information about our personal fiances as a means to strike pity from anyone. I showed our situation as an example because there are those who have children with special needs whose financial situation is even more precarious than ours. I can’t speak for anyone else about this sensitive topic but it is the reality of the world that we as parents of children with autism deal with every day. Money is always an issue for some of us. Many of us realize that our children are “responders” to the benefits of supplements. We could do the drug route for our children, which of course most would be covered by insurance. However the taking of antipsychotic drugs that are not designed for children, that have very scary side effects and are made by the industry that is in part, responsible for what happened to JR; just goes against my grain and the way I was raised. And anyone who reads this blog on a regular basis knows why. Those that don’t should read my past blog entries.
And now I remember the lose that the Travolta’s have endured with the lose of their beautiful son. I am sure that Jett represented a great source of pride and comfort for the entire family. I pray God delivers some level of peace to this fractured family. Being a parent; our greatest fear is the lose of our child. Just the thought of it makes my heart skip a beat. My mother in law buried her middle son, my husbands older brother. As did a very dear friend bury her only child when he was 32. The age of the child is irrelevant. It is not the natural order of things and should not be.
So, as I look back on this tragedy I can’t help but feel sympathy. And anger because this could have been prevented if the Travoltas would stop being sheep and think for themselves. Some will say that it was God’s will to take Jett when he died. Maybe it was, and maybe the cause of his issues was and ultimate was man’s greed. Either way it makes me angry and sad….very very sad.