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.

Now let's tackle autism

Living with my autistic son, Riel, has been an education. To put it rather mildly. He'll be 20 in September and for the first 15 years of his life, I was pretty much on my own. If it weren't for my sainted mother, I'd be a basketcase by now.

It all started innocently enough (after a normal pregnancy). He didn't flinch at my touch or avoid my eyes or any of the so-called warning signs. The only thing that worried his doctor was his lack of babbling. By the time he was 2, he hadn't made a peep (other than crying). No "mama", no "dada", none of the usual baby cooing.

So, we tested his hearing. Normal. And we made an appointment to see another doctor for a full range of tests (putting blocks in holes, lining up pictures, etc.). When she said the words, "Your son appears to have autistic tendencies." you could have knocked me over with the proverbial feather. Autism, what's that? And what kind of future will he have now?

Like many of you, my only contact with autism was the movie "Rain Man" with Dustin Hoffman as an autistic savant. The character was based on a real person, Kim Peek, and here's the beginning of a fascinating documentary on him from YouTube:



Click on the YouTube logo in the lower right corner to go to the site which links to the rest of the documentary.

Now, let's get something straight. This is not my son's life. He's not a savant that can count toothpicks in bundles or rattle off complicated math problems. He's autistic, plain and simple and endlessly frustrating.

But, when we've had one of those days, I try to remember how far we've come. Back when he was about 3, we had a full day's testing at a local hospital which shall remain nameless. Hours of tests, EKGs and whatnot, ended with a doctor actually looking me in the eye and saying, "He will never get better than this. He'll never talk and he'll never show affection. It's probably best if someone more qualified were to raise him." After lifting my jaw from my chin, I asked if he meant an institution. He did. Unbelievable. I scooped my son into my arms, thanked him for his time, and said, "I have a little more faith in him than you do, Doc. He's coming home with me." And thus our journey began.

From Day 1, I talked to my son as if he could hear and understand every word, even though he rarely reacted the right way. The first breakthrough came one day when he was getting dressed. I always gave him a choice such as the blue pants or the red pants, just in case he'd give me feedback either way. After months of doing this with no indication from him that he knew what the heck I was on about, I said we'd be putting on the red pants today ... and he reached out and grabbed them from the pile on the bed. Happy tears that day, let me tell you, he finally understood me!

It took a hell of a long time from there, but just after his sixth birthday, he finally started to speak, or babble like he was supposed to have done years before. Magic, it was, pure magic.

I'm not going to go through all the milestones here. Suffice it to say that doctor was full of crap! He speaks in full sentences now, plays on the computer, tells jokes, draws endless pictures of Nintendo scenes, sings (got that talent from his Nana, you'll meet her soon), and still loves good old "Sesame Street."

Where it gets frustrating is when he repeats himself over and over again. And it's hard talking to him about any kind of abstract concept, he just doesn't get it. He had to get dressed up yesterday as he had a job interview with a co-op program through his school. His shirt was a tad tight, but looked great when he stood up straight. I tried explaining the difference in how the shirt looked when he stands like he usually does, a little stooped, and how nice it looked when he stood up straight. No go, he just didn't get it.

He must have done something right, though, 'cause I'm thrilled to say he starts work at Sobey's (local grocery chain) on May 4th. That's my boy!

I have high hopes for this program as we really don't know where he'll end up after he finishes school. It's been an awfully hard decision to make, but I've resigned myself to the fact that he'll probably end up in a group home. I don't want to sound cruel here, but I just can't imagine taking care of him for the rest of my life. Whatever hopes and dreams I may have had 20 years ago for my own life were put on hold. That's what mothers do. I'm nearly 43 now and I'd like to think I have some kind of a future too.

When I started my website 11 years ago I avoided putting any pictures of my son online. As a single mother I was just too paranoid. I also avoided putting my own mug out there as I've battled with weight all my life and am not pleased with how I look. But, in the spirit of how proud I am of my son, here's a peek at my boys and I this past New Year's Eve, the first time he's celebrated with us.


That's Riel on the right. George, on the left, is six feet tall and, when Riel stands up, they're chin to chin. Big boy, eh? I'm pretty damn proud of him. He's come so far and the future is still wide open.

If you're curious about autism, CBC News has a nice list of links.

And there are some pictures Riel drew on our old computer right here.