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The day that CNN phoned me – What they didn’t print

By on January 6, 2011 in Autism, Autism vs Vaccines

So CNN phoned me today to ask me about my reaction to the Wakefield “fraud” story and about 20 minutes later, I had said all I had to say on the subject.

As is normal in jounalism, 20 minutes of talk time generally gets you about 3 or 4 lines in a news story. In this case, I’m pretty happy with what they quoted from me, what do you think?

Few swayed by fraud finding in autism study

Here’s what they didn’t print.

“Do you believe Wakefield was honest or fraudulent?”

I honestly have no idea but what I do know is that it’s so strange that there is no real investigation, a criminal one. There are claims that he hurt the children, that he paid the children (or their parents) and that the results of all this, if the results are fraud, may have directly caused many deaths.

We’ve been hearing about this study for 13 years, it’s been discredited for several, he was disbarred last year and in all this time, we still have no real answers.

“Do you think this news story will change anything?”

No, I don’t. People who are anti-vaccination read the studies that support their stance. The people who are pro-vaccination read the studies that support their stance. Everything else, they each dismiss.

To be honest, I’m rather sick of anti-vaccination people pulling the 7 degrees of separation game with every doctor that finds no vaccine-autism link in an attempt to link them to some big pharmaceutical company. So some guy’s grandfather had a neighbor that worked as a janitor for some company… is that really a reason to believe he was paid off to say something just to discredit Wakefield?

Why does it work one way and not the other?

Why is it ok to find these links to discredit every doctor out there that says what you don’t agree with but you don’t even bother to question the very public, very obvious controversies surrounding the one doctor that does say what you agree with?

If you question one doctor, or a group of doctors, you have to question them all. Believe no one, do your own research… ALL OF IT.

“Did this story or any of the stories about this make you question vaccines?”

Not really, no. It was pretty clear my son had Autism before his MMR vaccinations and even if there was some question, I’d rather take the Autism risk than the disfigured or dead risk.

No, this controversy is the one big controversy that divides the Autism community and it makes me sick. I get asked the question a lot and usually I don’t answer because I don’t want one side or another hating me. I just want everyone to support each other.

I don’t believe we’ve found the one cause, I don’t even think there is just one cause. But I am pretty sure it’s not vaccines causing anything.

“What do you mean by this is the one controversy dividing the Autism community?”

Well, we’ve had studies, just in the last year or two, that have suggested links to Autism with living next to a highway, with IVF, with jaundice, with premature birth, with oxygen deprivation during birth, with tylenol during pregnancy, with flouride in the water… I could go on and on. Why aren’t people fighting over any of these studies? Why isn’t there some big panic over any of these things?

Why does this one issue have to be so huge that it’s causing people to snap? I mean, this morning a company that makes toys and products for Autistic children posted the link to the Wakefield story on their facebook page and some moms were furious… lashing out at this company for posting a story to discredit such a wonderful man, and to slam all these parents… and so on and so forth.

I mean, seriously. Calm down. They shared the latest Autism news. That’s all!

“So it’s been 13 years now, you said, you think that’s enough?”

Oh yeah. I mean, not a single soul will have their mind changed by these latest news articles. It simply adds fuel to the fire in terms of dividing the community even more. It prolongs the argument.

All this energy in fighting could be spent on getting more teachers out there that understand Autism, getting more employers that are patient enough to take on some Autistic teens, getting housing built that’s affordable and with available help to those adults with Autism that will need it.

I don’t know what the future holds for my son but if he gets to be my age and this argument is still going on, then he’ll have missed out on a lot of services and information that could have been made available if we could just move passed this.

“So why do you think that this continues then?”

People are very passionate about this, this is their children. There’s nothing you can be more protective of than your own child.

I feel bad for the parents who for a while have a normal child, who hugs and speaks and then shortly after they turn 2, they lose all words and no longer look them in the eye. I would look for someone to blame too. If they had just gotten vaccines, I would be pretty angry too.

No news story is going to convince them of anything. When you have that much anger and frustration, it’s passion. They’re fighting for their children.

How much time has been spent with us fighting?

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My New Years Resolution

By on December 31, 2010 in Autism

Today is New Years Eve which means we all think back on the year, think ahead to the year to come and “resolve” to improve something somehow.. ourselves, our lives, the world…

The problem with New Years Resolutions is that most people only make them once a year. Really, we should be dedicating our lives to improving ourselves every single day. But that’s a whole other story.

Those of us with a child that’s been diagnosed with Autism know that we’ve been making resolutions with every therapy session, every IEP meeting… with every milestone that’s been missed.

Then New Years Eve rolls around and as we watch friends and family gather to ring in the new year, we’re “stuck” at home because there’s no one we’d trust with our children that aren’t old enough to be out partying for the big night.  The neighbourhood babysitter just isn’t going to cut it on these nights.

While we sit and wonder if everyone’s talking about how “stuffy” or “over protective” we are while they’re drinking it up, we are content with our decision… here’s why.

People celebrate the turning of the year over to a new one but really, is tomorrow really going to be different from yesterday? Not likely. You may write the wrong year on your rent check tomorrow. Otherwise, chances are you won’t feel any different.

When you have a child with Autism that’s missed so many milestones over those short few years between 2 and 5 years of age, you not only learn to really appreciate the little things but you learn what’s really important.

Pulling down the calendar off the wall to put up a new one is not cause for celebration.. your child saying “I love you” is. Your child using a toilet for the first time is. Your child looking you in the eye, giving you a hug… kissing you! Now that’s cause for celebration!

There’s nothing wrong with resolving to make your life better in the coming year but don’t ever think that I’m missing out on any celebrating when I’m at home with my boys on New Years Eve.

I’ve made my resolutions already… many times. I’ve had my celebrations and they meant the world to me.

It’s because I’m not out partying that I’m not missing a single thing.

So what is my “New Years Resolution” then? The same as it is every day:

To strive to be the person that I would like my children to grow up to be.

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“I don’t like to lose!” – A tough lesson to learn

By on December 30, 2010 in Autism

While sitting here at my computer working, my son and his older cousin are in the living room playing Mario Party 8. Normally, this game is a wonderful tool for him to develop his motor skills, hand-eye co-ordination and even problem solving skills. However, as he gets better at it, he’s finding that he has a much harder lesson to learn… that he can’t win all the time.

I could hear it building until finally he stomped his feet off into the kitchen screaming “I don’t like to lose!” with tears streaming down his face.

At this point, I got up, went into the living room and looked at him. Again, he looked at me and screamed “I don’t like to lose!” so I said “well then, if you can’t lose at it, you can’t play it” and turned off his game.

At this point, I expected a much larger meltdown so I had to move quick while I had his attention.

Before he could even open his mouth, I said “do you want to play this game again?” and he yelled “YES!”

So I said “well, you’re not going to unless you can lose.”

I continued “do you like to play the new Donkey Kong game?” and he said “yes” and I said “well, you’re going to lose.”

I said “do you like to go bowling?” and he said “yes” and I said “well, you’re going to lose.”

At this point he came back in and sat on the couch… knees up under his chin.

I said “Let me ask you Cameron, if you win… who loses?” to which he replied “Emily” (his cousin).

I said “Do you think she likes to lose every single time?” and he said “no.” I said “well, if you win every single time, she loses every single time. I bet she doesn’t like losing either. It wouldn’t be much fun if she got mad and stormed off into the kitchen, would it?” and he said “no.”

I said “Do you think that Emily wins every single time when she goes bowling?” and he said “no.”

I explained to him that he has to lose sometimes, Emily has to lose sometimes… even I lose sometimes. But when you lose, you get better at it until eventually you will win.

He felt better about it, but there’s no quick fix for this. 10 minutes later, he was right back into the game and getting mad that he was losing. Some people never grow out of it. We all know people that get really mad about losing.

And trying to teach a 5 year old with Autism that you have to lose in order to learn how to win is quite a tricky task to be sure, but it’s one of the fun parts of parenting. I like to think that a little bit of what I said sunk in… and next time a little more.

For this talk, I lose. But I’ll keep at it until I win… because when I do, so will he.

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Wow, my boy is just full of great surprises!

By on December 29, 2010 in Autism

So the Christmas holidays are officially over, I couldn’t be happier with how well my boys handled all the late nights, long visits with family they don’t know and everything else.

What truly impressed me were the little moments in between.

We gave Cameron (my 5yr old with Autism) a Nintendo DS Lite and gave Tyler (3yr old without Autism) a Leapfrog, both are handheld video game systems… this way they have something to do when they do have long visits with family, or long drives.

What was truly amazing was when Tyler picked up his brother’s Ninentdo DS, which was clearly too complicated for him. At first, I expected Cameron to tell him to stop playing with it, to take it away from him but to my surprise, he instead showed Tyler how to turn it on and play with it!

The next day, I was doing dishes and asked Cameron and his older cousin to find all of the dishes around the house for me. Again, he did as asked and for his reward, he received a kinder egg (chocolate egg with a toy inside). His cousin, jokingly, said “where’s mine?” and without a moment of hesitation, Cameron split the egg in half and gave half of it to his cousin!

Granted, that’s only 2 wonderfully amazing things over the course of close to a full week, but I’ll gladly take 2 over none… and certainly take 2 over meltdowns.

You have to understand, I got some great Christmas presents myself but not much ranks as high as seeing my boy do so very well. By the way, his chocolate sharing didn’t go unrewarded. I made sure to share some of my Christmas chocolate with him as a reward for being such a good kid.

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Teaching Children About Inclusion

By on December 26, 2010 in Autism

Starting a conversation with “Please don’t take this the wrong way” or “I hope this doesn’t upset you” doesn’t mean that you can then go on to be cruel, insensitive or intolerant.  It just means that really you know you are about to make a wrong decision but haven’t bothered to find an alternative.

Now it is likely that I am preaching to the choir.  I am not writing this for the other parents of children with special needs who have seen their children be politely excluded from play dates and apologetically not invited to birthday parties.  I am writing to those other parents.  The ones who seem to have forgotten that their job is to teach their childen about diversity, tolerance and problem solving skills.

So for those parents, let me make a few suggestions.

If your child says  “I don’t want Bobby coming to my party because I don’t want to worry about him acting weird”, try to find out what the actual concern is.  Is there a specific triggering behavior that you could prepare Bobby for?  Maybe you could suggest that Bobby’s mother stay nearby in case there is a problem.  Maybe you could remind your child that there will be plenty of other children at the party and not to focus on Bobby.  Maybe you could remind your child of the positive characteristics of Bobby and that the world is made up of all types of people.  We don’t have to like them all but we need to be tolerant of them.  If this is a child that you would otherwise invite, a family friend’s child, a neighbor or a classmate, then you should expect your child to include this one.  The best way to teach your child tolerance is to model it yourself.  Help them problem solve a way to make the party work for all the kids invited as well as your own guest if honor.

If your child says I don’t want to play with Sally anymore, again try to find out why.  Does your daughter think that Sally is boring, stupid, selfish, or some other characteristic that may be challenging because of Sally’s disability?  Help her to see that this behavior is not intended to be malicious but rather that Sally may need help learning to be a good friend.  Maybe you could suggest alternate activities that they could enjoy.  Try taking them to a neutral place such as a park or a movie.  Maybe in a new environment Sally might be interested in new ideas or  possibly in a neutral territory you could consider a situation where she doesn’t have to share.

Ultimately if you want your child to grow up being not only tolerant but inclusive then you need to expect that from the very beginning.  Don’t expect them to learn these values as adults if you haven’t encouraged it of them as children.

Here are a few more suggestions for encouraging tolerance and inclusion:

1.  Encourage your child to include children with disabilities, to play. If the child cannot play the same as other kids, come up with creative ways to accommodate the child’s challenges. Making up games can be lots of fun

2.  Teach the golden rule; Treat others the way you would want to be treated.

3.  Help your child find commonality — a hobby or interest — between him and this child with disabilities.

4.  Don’t label the child with special needs.  Referring to other child as “that child with hearing aids” or “the girl who stutters” only points out differences, issues that may not even concern your child.  Use “people first” language.

5.  Empower your child.  Let them know that they are allowed to feel safe and valued in a friendship as well.  They should not accept being physically or emotionally attacked by a child with special needs just because the child has a disability.  Nor should they feel like they always have to do what the other child wants if it is not a mutual choice.

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