Is autism *really* as bad as a car accident or the death of a parent???

According to Calgary Stampeders football player, Jay McNeil, it is.

In this article: http://www.wrn.com/gestalt/go.cfm?objectid=92471727-A4F8-BC29-E4C49C87DD252981 written by Eric Francis, Jay McNeil "faces a brave new front".

My husband showed me this article and I think my normally low blood pressure rose to amazing new heights!

A few quotes from the article (This article will be posted in full at the end of this post since the Calgary Sun has this habit of removing articles after a short time and the link will not work):

The tears in Jay McNeil's eyes suggest the news hit every bit as hard as losing his father at age 11.

Even harder than the 18-wheeler that careened into him at age 25 and should have taken his life.

"My son..." started McNeil, pausing to deliver words no parent wants to utter, "has autism."

Good Gods...one would think the boy had been diagnosed with cancer or something!

Now, a parent might say that if their child was incredibly low functioning, this would definitely not be a good thing.

The truth is, from Jay's own quotes, he is not low functioning:

"We knew he liked letters and numbers but we just thought he was a smart kid," said McNeil, who wasn't told of the diagnosis until last fall.

"He's high functioning so we're pretty fortunate that way.

"There are lots of e-mails going around about autism and one from a mother who said she'd give anything to hear her son say 'I love you.' Cuyler will. As far as intelligence, he's as smart a kid as you'll find at that age."

Obviously, this boy can talk, count and do a lot of things most other kids his age can do.

So...my question is "What's the problem?"

The "problem", in my opinion, is not that Cuyler is autistic; it is the stigma that is now surrounding him.

Because of this newspaper article alone, which is meant to be inspiring, Cuyler McNeil is forever going to be associated with being something worse than Jay losing his father at the age of 11 and even worse than Jay being involved in car accidents that almost took his life.

He will read this article one day and he'll make the connection: who he is is worse than death or a car accident.

Sure, Jay says that Cuyler inspires him to be a better person, which is great, but there will always be that comparison to his own father's death and an accident that almost took his life. Two things that most certainly are traumatic and devastating.

How is that going to help raise a child's self esteem? How is that inspiring? The only thing it inspired in me was anger.

When I was looking for this article on Google, I dredged up a few other articles that also play the "Autism is devastating" card.

Some of the headlines:

"Autism is a Heartbreak to Parents" By Fraces Kraft

The link to that article did not take me to the article, but onto Autism Society Canada's website where I read even more headlines! (see link below)

http://www.autismsocietycanada.ca/general_info/archived_news/index_e.html

"Autism cash not enough: critics", By KATE DUBINSKI

"Critics say Ont. doesn't spend enough on autism." CTV News/ Canadian Press

"Coming to grips with autism." by John Ivison, National Post

"Autism needs funding, not platitudes." By Jim Young, The Chronicle Herald

This one scared me: "Canada: Court Of Appeal Overturns Superior Court Ruling On The Charter Rights Of Autistic Children." Article by Robert Weir. The article goes on to say Wynberg et al. v. Ontario and Deskin et al. v. Ontario (hereinafter "Wynberg Deskin"). Briefly, Justice Kiteley had ruled that the Ontario government’s decision to deny funding of IBI/ABA therapy to children over five years of age was a violation of their right to equal treatment at law under section 15 of the Canadian Charter of Rights and Freedoms (the "Charter").

Apparently, denying ABA/IBI is a violation of an autistic child's charter rights. Apparently, the government isn't spending enough money on forcing children to go through ineffective "therapy" for 40 hours a week!

Looking at how ABA/IBI is normally done, I would argue that this treatment is an even bigger violation of a child's charter rights to appropriate treatment. Meaning, the problems causing the behaviour are not being treated and a toddler is being forced into 40 hours a week (an average adult work week) of behavioural modification that will force him or her to pretend to be normal and not even address or acknowledge the real reason those behaviours are there.

That, in my opinion, is an even bigger violation of an autistic child's rights.

What's worse is the constant demonizing and bad press.

I was at a bookstore the other day while fuming over that article and I picked up a book called "A Cup of Comfort for Parents of Children with Autism: Stories of Hope and Everyday Success", Edited by Colleen Sell, with forwards by Doug Flutie and Laurie Flutie (another star football player with an autistic child).

I flipped through it excpecting to be bombarded with stories of how defective, tragic and devastating these parents feel their children are. How pleasantly surprised I was when I saw that this was not the case at all!

One mother talked in a manner very similar to Jay McNeil when it came to her son's diagnosis. One thing she did say right of the bat was something to the tune of "I did not cry. As my son's new advocate, crying was not an option." Later on in her article, she mentioned talking to some people who say somethign to effect of someone else they know whose child has 'something wrong with them'. It is there she asked herself "Have I been projecting that there is something wrong with my son?" At one point she even resolved to "stop trying to fix" her son.

I was ecstatic!

Flipping more through the pages, I read the story of a mother whose son was obsessed with snakes. She learned that if she wanted to communicate with him, she had to do it on the "snake level", meaning it had to have something to do with snakes. I was moved by the end of the article where she tucks him into bed and he says "Mommy, I love you more than snakes". Awww!

None of the parents in the book hid the basic facts and challenges of raising their childs. No details were spared that would hide the fact that life is difficult. Cleaning up feces, talking about snakes, dealing with kids in the playground and school officials...it was all there. What was not there was the negative attitude.

I liked that all of these parents found success in adopting a positive attitude and learning to accept and work with their children on their own level.

Sure, there were problems, sure it was no picnic, but these parents realized that by looking at their child as a problem, they were making life worse. I've been around parents of NT kids to know that parenting a NT kid is not always a picnic either.

I look at some of my relatives and friends who have NT kids and I look at some of the things they deal with:

1. Their kids bringing home all of their friends unannounced - and some of those friends are "bad eggs"
2. Their kids sneaking out in the middle of the night to go and get high, laid or drunk with their buddies
3. Their kids being brought home in the middle of the night by the cops when they get caught shoplifting or getting laid, high or drunk with their buddies
4. Their kids demanding the latest and greatest fashions, shoes and toys so they can fit in with the crowd
5. The constant anguish of dealing with kids who are not academincally inclined and more interested in hanging out with their friends
6. Their daughter with "easy virtues" coming home pregnant at a very young age (or for boys: getting some girl pregnant at a very young age!)
7. Their kids giving in easily to peer pressure
8. Their kids constantly defying their authority

Now...this is not to say that parents of NT's have it worse. This is not even to say this is what parents of NT's always have to deal with. Parents of autistic kids have their own set of worries as well. All parents of any child do!

What I am trying to get at is that having any type of child presents its pros and cons. Every single child on this planet comes with his or her own set of challenges.

Such is the joy of raising and teaching small human beings with their own minds, abilities and challenges.

By seeing their child as a human being, the parents in the book were learning to communicate, interact and have a good time with their children. They were learning how to help their child develop a sense of worth, self-esteem, which will later translate into personal success and more independence for those children.

As I've said enough times before: communication and interaction with people is a two way street.

Everyone has their limits, talents, challenges and exeperiences to deal with in life.

Each of us (I am referring to all human beings) are who we are because of a number of factors:

• Experience - How one experiences the world from birth will colour the way that person behaves for the rest of his or her life. Autistic children experience the world in a completely different way than most people because of a differently wired nervous system. Certain sensory filters may not be in place, or may be too effective to the point of not being able to sense at all. No two autistics will experience the world the same way, which makes it even harder for someone to pinpoint what the person experiences...just like everyone else.
• Past Interactions - We all know that past encounters will shape the way we view certain things. Almost everyone has had some sort of traumatic encounter that makes them "once bitten, twice shy" or leery about encountering similar situations again! How many people have said they don't like bees because they got stung as a child? How many people fear heights or something because of something that happened in their childhood? Autistic children have encounters that traumatise them too. Some have constant encounters with their sensory system that are bothersome, but they cannot articulate it because they have always felt that way and know no different way of being.
• Messages Received from Authority Figures - Human beings are interesting in that they instinctively shape themselves based on the feedback received by those they perceive to be in positions of authority. How many people have said that all they wanted was their father to say he was proud of them? I've heard this from NT's and autistics alike for years. The same goes for teachers, parents, religious officials, etc.
• The Environment - Location, location, location! Whether we are raised in a war zone, trailer park, townhouse, apartment building, house or mansion makes all the difference in how we see our world and develop within it. There are also climate factors: tropical, arctic, wet, dry, etc. all have their effects
• Friends - "You can pick your friends, you can pick your nose, but you can't wipe your friends on the back of the couch." (A quote from my friend, Fil) The people we associate with make a difference as well...even for autistic kids. When I was in that residential facility (institution), my mother said that I started picking up the bad habits of the other autistic kids. "When in Rome", right? This is why I often caution parents when thinking of sending their kids to a "special school". When I went to Alternative High School, I found myself in the company of a lot of interesting people, many of whom are my friends today. Their encouragement, ideas and lessons helped make me become the adult I am. What of not-so-good friends? The druggies, drunkards and bad-asses? They shape one's life too...
• Family - "Blood is thicker than water...and tastes better with crackers" ( A badge I bought years ago) Family is not something you choose and not something you can get rid of either. One can disown a family, but as long as the DNA is in their bodies, that person will always be of that family! How a family behaves toward a child makes all the difference, since it is a home and family that the chils will likely be exposed to most. How parents and siblings treat a child are especially important.

The parents in the book are taking the right steps in that they are seeing their children as human beings and they know the impact they are having on their children's lives.

I've often said that parents and caregivers have an incredible amount of power over their children's destiny. What they say, do and provide for that child will shape that chil'd life, how he thinks of himself, how he reacts and how he will be in the future.

What are you providing for your child?

What are you saying to your child; out loud and through your actions and attitude?

What are you doing to your child?

Becoming a parent is almost too easy: A few minutes of fun, 9 months of carrying baby around inside the womb, varying hours of labour and that's it. (well, biologically it is) Any fertile couple can produce a child.

Being a parent is much harder. There is the reponsibility that comes with bringing an individual human being into this world. The actions, thoughts, words and attitudes of parents will shape their child's destiny. That's a big responsibility and one each parent needs to consider and honour.

What destiny, then, is Cuyler facing, with a father cries to mention his son's autism; who compares him being autistic to losing his own father at a young age and nearly being killed in a motor vehicle accident?

What does this boy have to look forward to when his own parents see him as a travesty? What will his self-image be like? What is his future going to be like?

I hope, for Cuyler's sake, that Jim McNeil eventually dries up his tears, accepts his son for who he is and helps his son strive to be the best he can be with all the encouragement, love and guidance he will need in life!

It's not as bad as a car accident, cancer or losing a parent. I know...I am autistic.


Stamp faces brave new front
Autistic son inspires McNeil to be great dad
By ERIC FRANCIS -- Sun Media
(Published on Wednesday May 16, 2007)

Stampeders o-lineman Jay McNeil and his wife, Tara, pose with their son Cuyler yesterday at their home. McNeil, who is set to receive the President's Ring from the Stamps organization tomorrow, publicly stated that Cuyler was diagnosed with autism. (Sun Media/Darren Makowichuk)

The tears in Jay McNeil's eyes suggest the news hit every bit as hard as losing his father at age 11.

Even harder than the 18-wheeler that careened into him at age 25 and should have taken his life.

"My son..." started McNeil, pausing to deliver words no parent wants to utter, "has autism."

On the eve of accepting his second-straight President's Ring as the Calgary Stampeders' most inspirational player on and off the field, McNeil chose to pay tribute to his greatest inspiration by going public for the first time with the battle being waged by his four-year-old boy, Cuyler.

"When you get the news that your kid is autistic, it's devastating," said McNeil yesterday, wiping tears from his cheeks.

"But I wouldn't change it for the world. Every day we thank God for bringing him into our lives. He's the best kid you could ever ask for. He's got the best attitude and is the gentlest kid. He doesn't ever want to hurt anybody. He just wants to have fun."

It was more than a year ago McNeil and wife Tara noticed Cuyler's affinity for counting, which led doctors to send him to a developmental pediatrician.

"We knew he liked letters and numbers but we just thought he was a smart kid," said McNeil, who wasn't told of the diagnosis until last fall.

"When they sat us down to tell us it was hard -- I teared up. But when I was driving home I called my mom to tell her and I finally broke down. Thing is, I wouldn't want him any other way. We loved him and thought he was an awesome kid beforehand and it doesn't change who he is."
Autism is a developmental disability stemming from a disorder in the central nervous system. It can affect children by delaying social interaction, language or play.

"Most people wouldn't know -- we kind of haven't really said a whole lot," said McNeil, 36, who has registered Cuyler in a regular school for next year.

"It can range from mental retardation to kids that don't talk and may never talk.
"He's high functioning so we're pretty fortunate that way.

"There are lots of e-mails going around about autism and one from a mother who said she'd give anything to hear her son say 'I love you.' Cuyler will. As far as intelligence, he's as smart a kid as you'll find at that age."

Thankful he lives in Alberta, which has the highest autism funding in Canada, the London, Ont., native says 30 hours of one-on-one work with two aids every week has helped Cuyler make huge developmental leaps since September.

A longtime spokesman for CUPS who has made regular appearances at charity functions throughout his 13-year career, McNeil says he and Tara want to get involved with Autism fundraising.

Fortunate enough to have won two Grey Cups while playing in front of a handful of the game's top quarterbacks the last 13 years, the 300-lb. Stampeders offensive-lineman also feels blessed to have escaped death after experiencing two high-impact car accidents within an hour.
"My Jeep hit black ice and rolled end over end twice and then on its side," said McNeil of the 1996 accident on a North Dakota highway.

"The cops came and we were waiting for a tow truck and an 18-wheeler slid on the same ice and crushed all three cars we were in.

"I was sure the cop next to me was dead -- he was slumped over the wheel and unconscious and I didn't have a scratch on me. I was definitely lucky to be alive."
Despite his son's battles, not a day goes by the five-time all-star doesn't realize how charmed his life has been.

McNeil is revered by teammates and a fan favourite on a model franchise that will honour him at noon tomorrow with a soldout luncheon at the Convention Centre sure to get emotional when talk turns to his family.

"Whenever things get tough I think about Cuyler," said McNeil, only the third Stamp to win consecutive President's Rings as voted by teammates (the others being Alondra Johnson and Danny Barrett).

"He's easily the most inspirational thing in my life. Everything Tara and I do we think of him first. We just want to give him every chance to succeed."

Just like his big daddy.