June 6, 2007

Open Letter To John Travolta and Weekend Shenanigans

While I highly doubt Johnny boy will actually read this (heck, I'm not sure *anyone* is reading this thing!), there's a little something I feel I, as the mother of an autistic son for nearly 20 years, should address.

According to Wikipedia, this plea from Hollywood Interrupted's Mark Ebner, and this story from Sunday's Herald Sun (an Australian newspaper), Travolta has been avoiding a possible problem with his son for quite some time. Jett is now 15 years old and has been rumoured for years to be autistic. Their cult's teachings don't "allow" this, so it's been swept under the carpet.

From the Wikipedia entry:

"On April 10, 2006, Mark Ebner of Hollywood, Interrupted made a public plea to Travolta and Preston to have their son treated for autism, alleging five reliable sources — including representatives from Cure Autism Now and The Autism Perspective — who say that Jett suffers from autism, and not from Kawasaki syndrome as stated by the parents. His brother Joey Travolta recently produced a documentary about autism."

And from the Herald Sun story:

"But parents of autistic children say that Travolta should join American celebrities Sylvester Stallone, Doug Flutie, Jenny McCarthy and Toni Braxton - who all have autistic children - in raising awareness and research funds to cure the disease."

Also see this Autism FAQ - Well-known Autistic People from the Autism Resources site.

I read through the comments attached to Mark's plea and I need to address some issues. First and foremost, autism is NOT a disease and it can't be cured. It can be controlled through therapy and, in extreme cases, medication. But there is no cure in sight at this point. I wish there were, believe me, but my son will never be autism-free. His condition has improved a great deal over the years, yes, but Riel will never be perfectly "normal."

He is also NOT mentally challenged (or the dreaded r-word which should be outlawed), as so many of the readers commented. I can't believe people still think that way in 2007, amazing. Talk to some autistic kids. Trust me, most of them are probably smarter than you and I, they just have a hard time expressing themselves.

I have a problem with organizations (such as the two mentioned above) giving people false hope. How the heck can we expect a cure when we still don't know what causes the damn thing? By all means, cough up dough for research and programs to help parents deal, get the kids into therapy (still too expensive for the average family to handle), whatever, but don't feed these desperate people lies on a sugar-coated spoon.

There is no cure. Deal with the son or daughter you have now. Love them, train them to behave better, stop them from biting themselves or knocking their heads against a wall, but don't waste your time and money dreaming of a cure.

Way back in 1992, the TV show, "20/20", had a fascinating report on what's now known as the Leominster Cluster in Massachusetts, home to a Foster Grant sunglasses plant. Here's a write-up I found published by The New York Times in 1992:

Tonight's edition of "20/20" contains intriguing evidence of a connection between environmental pollution and autism. "The Street Where They Lived," a report by Dr. Timothy Johnson, the ABC News medical editor, focuses on a number of children who suffer from some form of pervasive developmental disorder, a combination of social, behavioral and language problems, of which autism is the best known. What links the children is the town of Leominster, Mass., where their mothers or fathers grew up in the 1960's.

Leominster was then home to several plastics companies that polluted air, water and land. Suspicion centers especially on the 27 smokestacks of Foster Grant, makers of sunglasses; they spewed a derivative of vinyl chloride, which is known to cause cancer and other illnesses. The relationship to autism is not proved, but, as Dr. Johnson notes, the figures are startling: a neighborhood of about 600 homes around the Foster Grant plant have produced 42 cases of pervasive developmental disorder. That compares with a national figure of 15 children in 10,000 who show symptoms of the disease. Experts remain unconvinced, but this brief report ends with a hope that the painful story of Leominster may hold a clue to the cruel riddle of autism."

And there's an interesting story on the Brown University site on Martha E. Lang, a paraprofessional in Bio-Med, and her dissertation on the environmental connections with autism she found in Leominster.

But what's been done in the last fifteen years? Diddley squat as far as I can tell. What else happened fifteen years ago? That's right, little Jett Travolta was born and, if reports are correct, diddley and squat have been done for him as well.

I'm so glad we didn't give up on Riel when he was first diagnosed (as that doctor I mentioned in this post wanted me to do) and I'd hate to think Travolta's done the same.

So, why should I care what he does about his son? Because it breaks my heart to think one of the richest men in the world, someone who could buy the best therapists and all the equipment or nutritional supplements a kid could need, is doing nothing and hoping it goes away or something. And I can only imagine the positive influence someone like Travolta would be for the autism community.

When I started my adventure on the web eleven years ago, I didn't have a lot of content and just naturally assumed folks would enjoy seeing pictures Riel had drawn with our Paintbrush program. Boy, did they! And some of the messages brought me to tears. In particular, a sister whose autistic brother was never allowed to participate in family activities as her parents were "ashamed of him." She wrote to thank me for showcasing Riel's artwork and not hiding him away from the public eye. How bloody heart-breaking is that, huh? I wrote back a long email that I hope helped her cope in some way. I just hate to think Jett is being treated the same way.

On another autism related note, I so wish I had known about this past weekend's 3rd Annual Ontario Walk Now For Autism here in Toronto, but I was clueless (I'm pretty ticked at Riel's school for not telling us). I'll remember for next year and we'll be there with bells on!

Perhaps we'll call ourselves Riel's Rangers or something. Get a load of some of the great team names I found on the site:

A Mile For Max
Christopher's Crusaders
Finding The Missing Pieces
Jack's Joggers
Jammin' for Jason
Kieran's Smile Says Miles!
Mad Mac's Family
Magic Backyard
Matthew's Voice
Mike's Believers
Nicholas' Noodle Heads
Nicholas' Nearest and Dearest
Owen's Optimists
Raisin' Hell for Isabel
Roarke Rocks
Ronan's Renegades
Tyler's Future
Under the Umbrella Tree
Vanessa's Smile

If you're still reading, you must be here for the latest Weekend Shenanigans, so let's get to 'em! The only outing we had was on Saturday for the Kingston Road Street Fest. First time in ages that the weather was nice enough, but alas, it seemed the fest was a lot smaller than previous years. It helps if you have very young kids as they'd enjoy the face painting, the bouncy castle, and the clowns etc. Otherwise, we enjoyed the street bands:

While the Kingston Road United Church drew a good crowd:

And a couple of mounted police made an appearance which the kids loved:

There were clowns (or at least this guy):

And, ummm, a gingerbread man posed for me:

Gabby's had a band called Coldwater entertaining inside:

Which Riel enjoyed dancing to (they had a really nice sound actually):

And he got a kick out of the karaoke machine set up outside Gabby's:

Meanwhile, after we'd done the fest, George enjoyed seeing the Toronto FC win 2-1 over the Colorado Rapids:

I rounded off the weekend by taking a shot of our cat, Doc, stretched out in the backyard:

In other news, I thought this Yahoo.com item was pretty cool:

WARSAW (Reuters) - A 65-year-old railwayman who fell into a coma following an accident in communist Poland regained consciousness 19 years later to find democracy and a market economy, Polish media reported on Saturday.

Wheelchair-bound Jan Grzebski, whom doctors had given only two or three years to live following his 1988 accident, credited his caring wife Gertruda with his revival.

"It was Gertruda that saved me, and I'll never forget it," Grzebski told news channel TVN24.

"For 19 years Mrs Grzebski did the job of an experienced intensive care team, changing her comatose husband's position every hour to prevent bed-sore infections," Super Express reported Dr Boguslaw Poniatowski as saying.

"When I went into a coma there was only tea and vinegar in the shops, meat was rationed and huge petrol queues were everywhere," Grzebski told TVN24, describing his recollections of the communist system's economic collapse.

"Now I see people on the streets with cell phones and there are so many goods in the shops it makes my head spin."

Grzebski awoke to find his four children had all married and produced 11 grandchildren during his years in hospital.

He said he vaguely recalled the family gatherings he was taken to while in a coma and his wife and children trying to communicate with him.

From there, I stumbled on this interesting story about Kirk Cameron preaching and this entertaining take on YouTube called GodTube where I found these two funny vids:

Mac vs. PC ad parody

"Baby Got Book", a parody of the rap hit "Baby Got Back":

Man, I just love my web! Till next time, kids.

No comments: