Archive | August, 2011

The Jenny McCarthy-Autism paradox

By on August 8, 2011 in Autism vs Vaccines

Jenny McCarthy Autism

Perhaps I titled this article wrong… paradox should be plural.

If you’re an avid Jenny McCarthy fan and have some very strong beliefs in certain things, this may upset you but I still ask that you read with an open mind.

1998

Wakefield releases a study stating ties between the MMR vaccine and Autism… not stating exactly that one causes the other, or that you should stop taking vaccines… but that’s the message that the public receives. The media doesn’t help much nor does Wakefield in subsequent interviews.

1999

Thimerosal is removed from almost all vaccines in the US, except for some flu vaccines.

As a side note… Thimerosal was never in the MMR vaccine.

May 18th 2002

Jenny McCarthy’s son, Evan, is born.

2005

Evan, 2, begins having seizures so severe that he’s repeatedly rushed to hospital emergency. – http://www.time.com/time/magazine/article/0,9171,1968100-2,00.html

Evan is diagnosed with Autism at the age of 2.

Remember, Evan was 2 in 2005 until May.

2006

Jenny writes about her “crystal child” in Insights of an Indigo Mom: A Mother’s Awakening… in which she writes about chain smoking and cheeseburgers up until his birth at which point she changed to Hepa air filters and eating vegetarian.

I wonder why she never blamed the chain smoking and cheeseburgers… also, one would wonder why she’d write about Cystal/Indigo stories if he was diagnosed with Autism 

2007

Jenny changes her story in May, saying that he’s not really a “crystal child”, he’s actually Autistic. – http://en.wikipedia.org/wiki/Jenny_McCarthy#Activism_and_autism_controversy

She claimed that the MMR vaccine specifically caused his Autism… and began campaigns against Thimerosal despite the fact that it never contained Thimerosal and he was born several years after Thimerosal was removed from most vaccines.

Jenny goes on a book writing spree over the next several years, publishing several books on motherhood as well as “healing Autism”.

2008

Jenny begins her crusade against Autism, becoming a spokesperson for Generation Rescue and TACA and appearing on several radio and television programs, including Oprah. Each appearance includes endorsements for her books.

Jenny also claims that Evan has “recovered”… which isn’t the same as cured. But it doesn’t stop the media from using that word a lot in articles about her and her son.

Jenny and Jim Carrey begin a “march on Washington” to “green our vaccines”. When interviewed, Jenny claims that Evan was “undiagnosed with Autism”.
Jenny also reinforces that she is not anti-vaccine but rather for safer vaccines and spaced out schedule. An excerpt:

Don’t do more than one shot in a visit. Do you see what I’m saying? Not to not vaccinate. Space them out, ask for mercury-free. Make sure your child is not sick before you vaccinate. Your child does not have a good immune system. How is it supposed to detox the vaccine? Test your child for an immune system. Make sure they have really good glutothion. Glutothion is your body’s naturally antioxidant to detox these things.

2010

Doctors and scientists start to question McCarthy and the diagnosis that her son received, claiming that his symptoms more closely resemble Landau-Kleffner syndrome… very similar to Autism but treatable. – source http://www.time.com/time/magazine/article/0,9171,1968100-2,00.html

Despite the possibility that he never had Autism to begin with, Jenny confirms that she’ll continue to “be the voice” for the disorder. She also begins to realize that it wasn’t really the MMR vaccine after all, stating that she just wants vaccines to be safer, rather than getting rid of them entirely.

2011

Jenny joins the Generation Rescue board in January.

Jenny speaks out in support of Wakefield, claiming “I know children regress after vaccination because it happened to my own son” and asking “Why have only 2 of the 36 shots our kids receive been looked at for their relationship to autism?”

One would wonder why there’s any need to check the other vaccines if she’s so certain it’s the MMR.

Jenny continues onward, claiming that “kids do recover from Autism” as her son did, with a gf/cf diet and vitamins. Previous articles went into more details of his treatments including “a gluten-free, casein-free diet, vitamin supplementation, detox of metals, and anti-fungals for yeast overgrowth that plagued his intestines. ”

What can we take from all of this?

Well, first, we have the fact that the blame she has shifts radically from Thimerosal (ethyl-mercury) to the MMR vaccine itself to the vaccine schedule (multiple vaccines at one time) to simply vaccines in general, asking for more research.

Secondly, she seems very conflicted about what exactly her child may actually have. First there’s crystal child/indigo mom theories, then it’s Autism and now there’s questions of Landau-Kleffner syndrome which, from what I can tell in my research, she has never actually explored.

Third, almost everything she gets involved with seems to have a heavy self promotional feel to it. Many praise her for getting into the spotlight for Autism awareness but at the same time, there are many people who believe she does it simply to get herself into the spotlight. Most notably when she recently offered to pose nude once again for Autism awareness reasons.

Finally, and this is a big one… she has become the leader of the anti-vaccine movement despite the fact that she never once said she is anti-vaccine herself…. and in fact, professed many times to wanting more research, safer schedules and “greener” vaccines.

Much like Wakefield, who had his own patent for a vaccine as partial replacement of the MMR vaccine (who would patent a vaccine if he was anti-vaccine?!?), her concerns over vaccine safety lead to hysteria and paranoia among parents who now place their children at much greater risk than they ever were before.

In my opinion

Seriously, as others have said before… stop listening to a Playboy bunny/actress for medical advice. That’s not to say that she’s not allowed to have an opinion. She is… but she’s doing the same research you are. She’s not a doctor nor a researcher.  She’s a mom just like every other mom and her opinion holds the same weight.

Also, stop putting words in her mouth that she didn’t even say. She never said she was anti-vaccine and she never told you to not vaccinate. Don’t tell me she did. Whether you hate me right now for writing all this or not, don’t assume I haven’t researched this. I have. I know she’s “pro-safety” and not “anti-vaccine.”

Lastly, and this is just my opinion… people of high influence, such as celebrities, should be very very careful about what they randomly put out there. These are our children and unless you are absolutely certain (and when it comes to vaccines, no matter what you think you know, you are NOT absolutely certain), you should not be putting fears and doubts and unproven concerns into the minds of people that could put themselves and their children at risk.

The point is, there is a chance that what you *think you know* may be wrong. There is an even bigger chance that the way people interpret what you say may be wrong.

The one clear message through this entire post, that I’d like for you to take from this is, Wakefield and McCarthy are not anti-vaccine!!!

Despite them both saying that they are for safer vaccines, they have not made it abundantly clear that they are not anti-vaccine.

Wakefield needs to stop putting out articles on studies, McCarthy needs to stop putting out articles on recovery and her own story.

What they need to do (if they insist on continuing) is write articles and do interviews that consist of nothing except them telling parents “Vaccinate your children! Do not withhold vaccinations. Vaccines save lives!” They need to explain their stance, clearly and definitively. If they are pro-safety and not anti-vaccine… then why are anti-vaccine activists praising their work?

If they have no intentions of making this clear, then they should no longer be in the media, in my opinion. Because the message they think they are sending is not the message that some parents are receiving.

This is the Jenny McCarthy paradox as I see it. On one hand, I respect her work to raise awareness. On the other hand, I despise the self promotion and her willingness to let parents continue to be anti-vaccine in her name.

Is it any wonder that people’s opinions of her are so conflicting?

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Conversations between a boy, his brain and his heart

By on August 7, 2011 in Autism

During dinner tonight, Cameron (my 6 yr old with Autism) began to explain that he did bad things yesterday because his brain told him too. His brain gave him the bad ideas and he had to listen to his brain and so that is why he did those things.

It was at this point that I decided to introduce Cameron to his heart.

Thought vs Feeling

Brain vs HeartI explained to Cameron that his brain will always want to do things… some things that are good, some things that are bad. That’s because the brain doesn’t know what is right or wrong. The brain just gives you thoughts and ideas.

I told him that there’s another voice inside him that makes him feel if something is right or wrong. It doesn’t make him want to do anything but it does tell him if what he’s doing is good or bad… right or wrong.

Cameron: “How do you listen to your heart?”

Me: “Well, it doesn’t really speak to you… it makes you feel.”

Cameron: “Feel what?”

Me: “If your brain tells you to go and play instead of eating your supper… your heart makes you feel good or bad about that. Your heart is what makes you feel if something is a good thing to do or a bad thing to do.”

Cameron “…”

Me: “Does your heart tell you it’s good or bad if you don’t eat supper?”

Cameron: “Bad.”

Me: “So even though your brain wants to go and play, your heart knows that you should stay and eat, right?”

Cameron: “I should stay and eat! I should listen to my heart!”

Decisions

Cameron: “So I have to make my heart tell my brain?”

Me: “No. Your brain tells you what it wants to do and your heart tells you if it’s a good thing or bad thing. Then it’s up to you to decide if you want to do it.”

Cameron: “I decide?”

Me: “Yes. Do you remember when mom would give you two shirts to choose from when you got dressed in the morning? She’d ask you ‘Do you want this shirt, or this shirt?’ and you got to pick which one you wanted?”

Cameron: “ya…”

Me: “Well, your brain will want to do things and your heart will make you feel good or bad about it… then you get to decide ‘Do I do it or do I not do it?’”

Cameron: “I get to decide?”

Me: “Yes. That’s why you should always listen to your heart.”

After dinner

I finished eating first but a short time later, Cameron left the kitchen table with a huge smile, went straight to his mom and said “Mom, guess what!? I finished all of my supper because I listened to my heart!”

He was so proud.

A little while later his little brother was getting into a little bit of trouble, so Cameron pulled him aside and said “Tyler, you have to listen to your heart! Then you won’t get in trouble!”

This isn’t the first time that he’s explained to us how his brain thinks up the bad things and he just has to do them. But until now, I really had no way to handle that sort of thing. A 5 year old with obvious language/understanding deficits can only be reasoned with so much.

But now…. he’s such a proud 6 year old. Still with deficits, yet wise beyond his years… and so very bright.

I have complete faith that, even though he’ll still get into trouble like any boy should…. he’ll never forget how important it is to listen to his heart.

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The truth about how a research study goes from the lab, through the media, to the people

By on August 5, 2011 in Autism

I recently wrote about how the media is causing a civil war within the Autism community… it happens with many communities but obviously my focus is on Autism. It’s why you’re here reading my blog.

In response to that, Josie commented with a link to an image which is both hilarious and, more importantly, true.

It’s a very accurate description of exactly how a study can go from a researcher’s lab/desk, through the PR office to the media, through the national and local media, through the bloggers interpretations and finally, to the people.

And sadly, like a really messed up game of Telephone where the original message doesn’t even come close to resembling the final message… the study gets very distorted until what’s being told from person to person isn’t even remotely the same as what the original study concluded.

So the next time you read about a study in the news, or see something on television… remember this image because chances are, this is exactly what happened before it got to you.

science in the media

Source: http://phdcomics.com (Click for full size)

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Being an Autism Advocate – What I can overcome and what I can’t

By on August 4, 2011 in Autism

There is one inherent problem with being an Autism Advocate. That is that what makes a person the best Autism Advocate also makes them the worst.

Sounds strange, I know but let me break it down for you, as how I see it.

The two best types of people to be an Autism Advocate are:

  1. A person with Autism/Aspergers
  2. A parent of a person with Autism/Aspergers

Who would know more or understand better than these people? Who better to stand up for their rights than the people right in the middle of it?

ObstacleHowever, think about it. Does it makes sense for a person with social and communication difficulties and impairments to be out there, speaking out and advocating for everyone? Does it make sense for a parent, with virtually no time or money, to be devoting time and money that they don’t have to speak out on behalf of others?

Parents are tired, Autistics are introverts…. Parents are busy, Autistics are usually avoiding the crowd.

It creates quite the problem when the best people to speak are the ones that are the least likely to.

There are some exceptions and there are other people that make great advocates, but for the sake of this post, I’m generalizing the majority for the sake of making a point.

What I can overcome

Social networks have really changed the world in that, you don’t have to be a celebrity or own a national news network to reach people.

My blog posts can reach hundreds, sometimes even thousands of people in a day. My tweets and status updates are the same.

And it’s not that what I do is all that great but that the people that follow me or read my stuff are so supportive and kind that they’re willing to share it with their own networks to help me reach out further.

Sitting in the comfort of my own home, I can reach thousands so long as wonderful people allow it and support me.

What I can’t overcome

I work a 9-5 job, like many people but I feel like I could do so much more if I didn’t. I can’t write like I want to, I can’t get out there and spend time with people, I can’t do interviews with people… it’s very limiting.

On top of that, even when I’m not doing the 9-5 thing, I am often doing quite a bit around the house since my wife has Fibromyalgia. Much of my off time, and even sometimes during my work time, I am doing quite a bit of chores around the house.

I live in the middle of nowhere, which means I can’t get to seminars, conventions or even out just to meet some of the wonderful parents, doctors and Autistics within the community.

No money is another big one. I can’t even buy the books that I hear about or that I’ve been wanting to read for so long.

The desire to do more

I have an itch…. I want to do so much more. I want to be more involved, I want to be contributing far more than I am.

But at the same time, I need to be a little proud of myself. I’ve been able to do quite a bit despite having so much limiting me.

The same is true for so many other advocates out there. If you reach an audience, whether that audience is 2 people or 20,000 people… just think of all that you’ve been able to overcome to achieve that. And think about, not only how good that feels, but how much good that does.

I think we’d all like to do more… and the more we do, the more we will want to do. That’s what makes an advocate a good advocate, I think.

If you’re an Autism Advocate, or any kind of special needs advocate, I want you to know that yes, I am bragging a little in this post.

It’s ok to brag a bit, so you should to. Don’t make it a big deal but feel good about what you are able to accomplish.

Even if you do find some obstacles that you are unable to overcome, you should be proud of the obstacles that you can overcome. You should be proud of yourself.

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Knowing your child’s limits

By on August 3, 2011 in Autism

No one knows your child better than you do… at least, that’s how it should be. That’s not true for every single parent but that’s a subject for another post. I digress…

All children have limits, Autism has a way of setting the bar a tad lower so that it’s hit a little sooner, a little more often. However, it’s still a bar to reach and as the parent, you begin to recognize where that bar is and how far away your child is from reaching it.

The terrible twos

angerIt’s usually around the age of two when that limit begins to show itself in a recognizable fashion. It’s around this time that afternoon naps stop happening as part of a routine and begin happening as a way to calm the storm.

For what ever reason, when children get tired… they do one of two things:

  1. They put their head down or against what ever they have next to them, unable to keep their eyes open any longer, then fade away into dream land
  2. They build momentum, gathering energy from the depths of their being and turn into very loud, very hateful little monsters that freak out at seemingly anything and nothing

Does any of that sound familiar? Do you remember those days?

Anyone that has a child older than 2 recognizes the “uh oh, I think someone is ready for a nap” part of the day where nothing can keep a child from getting upset.

Autism and the years that follow

The reason that it’s called the terrible twos is that children grow out of that, they stop having naps and hopefully stop testing you so much.

With Autism though, that may not be the case. Well, let me rephrase that… they may stop napping, they may stop testing you but they may still be reaching their limits just as easily as ever.

For example

My son Cameron, 6 with Autism has long outgrown afternoon naps. His little brother Tyler, 3 without Autism, has now outgrown naps as well.

However, there are still days when Tyler is very obviously tired in the afternoon and not happy with anything. On those days, he’s sent off to bed whether he likes it or not.

It’s much more rare but the same thing happens with Cameron, even to this day.

If he’s having a bad day, if he had a long day the day before, if he woke up too early, if he went to bed too late…. any number of things and in fact, sometimes it seems as though there’s no reason at all…. sometimes he’s simply just at the end of his rope far too easily, far too often.

Today was one of those days.

I work from home but we still have a babysitter during the day when my wife works… as I can’t really work and take care of them at the same time. Well, Cameron was at the end of his rope.. outright defiant and screaming at the baby sitter. So I had to step away from my computer and make an appearance.

It was very clear to me that Cameron had reached his limit and wasn’t coping with it.

Sometimes Cameron, and most autistics really, learn how to deal with it themselves… seeking out a quiet area to be by themselves, or even just sitting back and doing something so as to sort of “power down”, as I call it, to just relax for a bit.

Cameron was clearly not going to be powering down today on his own so I had to step in, get him to his room and inform him of his need to have a nap. He objected, quite loudly, but that was that.

Almost 2 hours later, he emerged from the room… a completely different child. TWO HOURS! So ya…. he was tired!

Pay Attention

You know your child and you know when they’ve gone beyond the point of no return. Meaning, they can’t calm themselves back down, they can’t seek out the quiet, relaxation they need on their own… you will have to be the bad guy and tell them that you don’t care what they want, they need to calm down.

Once completely out of control, they could hurt themselves or others… even if not, sometimes the grief is so strong after that they feel guilty for days for how they acted.

If you can’t avoid it from happening before hand, you have to step in and do something as it happens before it gets out of hand.

Know your child’s limits.

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