How Much Longer, President Obama?

Mr. President,

Are you just going to ignore the problem while paying lip service like President Bush did?

What will the autism rate be when Sasha and Malia are having children? Mr. President, you are a Star Trek nerd and your daughter has an autoimmune disorder. You should probably know that your own family is likely on the short list to join our not so exclusive club in the future.

If you would like to know what being the grand father of a child who has slipped into autism is like, I am sure I can arrange a meeting between you and my dad so you can decide if this is worth your attention now, or if you want to risk being just like us and saying, "If only I would have....", "If only I had known...".

"If only I had spent the billions from the non-epidemic of swine flu, on the real epidemic of autism when I had the chance, then maybe my grandson could look me in the eye and call me 'grandpa'."

Sincerely Distressed that You Are Not Distressed,
Ginger Taylor, M.S.

Missing autistic teen found dead

Jett Travolta 1992-2008

Our heartfelt condolences to the Travoltas.

John Travolta's son dies in Bahamas

NASSAU (Reuters) – The teenage son of actor John Travolta died suddenly on Friday during a family vacation in the Bahamas, according to the family's lawyer.

Jett Travolta, 16, suffered a seizure at his family's vacation home at the Old Bahama Bay Hotel on Grand Bahama Island, attorney Michael Ossi said.

Attempts were made to revive him, but he died at the scene, Ossi said.

Jett, who had a history of seizures, was the eldest child of Travolta and his wife, actress Kelly Preston. They also have a daughter, Ella Blue, who was born in 2000.

The only question harder than, "how do I live with my child who has autism?" is "how do I live with out him?"

UPDATE: The New York Post on Jett's autism, medical treatment or lack there of.

I earnestly hope that this didn't happen because Jett's seizure disorder was not treated. It is bad enough that Scientology does not recognize autism as anything other than an psychosomatic expression of some sort of moral weakness, if it also prevented his family from giving him needed seizure meds, as it has with others, I pray that this will be a wake up call to those who adhere to its practice.

Scientology has hurt a lot of people and I truly hope Jett was not another one of their victims.

UPDATE: Reuters is reporting that Jett had been on Depakote but was taken off. Chandler is not a child with seizures so I don't know enough about these meds to comment. Perhaps one of my readers with more experience on the subject might.:

"Travolta's lawyers, Michael Ossi and Michael McDermott, were quoted on Sunday as saying Jett apparently suffered from grand mal, a type of epilepsy marked by convulsions and loss of consciousness.

He was on an anti-seizure medication called Depakote for several years, Ossi and McDermott told the celebrity website TMZ.

They said the drug was suspended after it lost its effectiveness amid concern about side effects, however, and Jett had been suffering about one extremely serious seizure a week".

Update:

The autopsy is in and Jett died of a seizure. He has been cremated and will be laid to rest in Florida.

No doubt this will only be the beginning of intense scruteny into the Travolta's parenting decisions and the part that Scientology may have played in choosing not to treat Jett's seizures at the time of his death, and the family's public denials of Jett's autism, but I will leave that to others to hash out.

For now, I just want to reiterate my sadness for the family at loosing their beautiful boy.

I am so sick of our kids dying.

Benjy's Death

For the last few days, while I was focusing on the drama playing itself out on the front page of the New York Times, a more important drama has been playing itself out in the back ground. The search for missing autistic 7 year old Benji Heil who walked out of his home last Thursday night and who had hundreds of people, including our own Nancy Cale of Unlocking Autism, coordinating search efforts and walking for miles to find him.

The search ended yesterday in tragedy. Benjy's body was found, were we all worried it would be, in the water. Our children love the water.

Officially it is said that people with autism live a normal life span. Autism parents who see this same story happen over and over again believe that that official opinion is not based on any study of what actually happens to these children.

This is another example of what I believe is the primary reason that a "cure" for autism now is so important, that this world is a dangerous place for people with autism.

In our last home Chandler had gotten good at getting out of the house, even climbing the kitchen cabinets and out a high window. One of the reasons we bought the house we live in now is that it is not an open floor plan, it has lots of rooms, all with doors that close. We have installed locks on some of the inner rooms so that to get out of the house from any exit, he has to get through two locked doors.

But there have been two times that we forgot one lock and the neighbors have brought him back over to us when he knocked on their door because he wanted to play.

Thank God he headed for their house and not for the water.

Our condolences and prayers go out to Benjy's family and all that are grieving him.

Body of missing autistic boy recovered in Wisconsin
Associated Press

WISCONSIN RAPIDS, Wis.— The discovery of a 7-year-old autistic boy's body in a pond not far from his home Tuesday ended a community search effort that drew hundreds of volunteers each day since he disappeared last week.

Even those who weren't in on the organized search for Benjamin "Benjy'' Heil stayed on the lookout for him since he vanished Thursday, said town of Nekoosa resident Darcy Peckham, 33.

"It's a tragedy that this whole community is going to have a hard time getting through,'' said the mother of six. "I've got children of my own that age, and it just makes you realize how close that family is. You realize that, wow, in a split second it can all be gone.''

Wood County sheriff's Lt. Dave Laude said the boy was found about 11 a.m. in a pond adjacent to Ten Mile Creek less than a quarter mile from his town of Saratoga home. A search dog led to the discovery, he said.

Wood County Coroner Garry Kronstedt said an autopsy was scheduled Thursday in Portage.

The boy had been playing in the basement when his family realized Thursday evening that he was gone and called authorities.

Hundreds of people turned out each day to look for the boy.