Tag Archives | parents

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?

Comments { 54 }

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.

Comments { 5 }

Should you tell a stranger if you suspect their child may have autism?

By on August 2, 2011 in Autism

Recently, the folks at Babble.com asked the question “Would you tell a stranger if you thought her child might be autistic?”

parentsDepending on your convictions, you would likely answer it pretty quickly, one way or another but after putting some more thought into it…. well, let’s just say there are some very good arguments for saying yes or no.

As an example, let’s say you go to a community event where you meet new people and all of the children are playing. One child is not playing with the others, aligning toys in a row, making repetitive actions and the mother seems oblivious to any of this. She just thinks that her child is going through a phase or is “quirky” (we’ve all heard that one, right?).

Do you say something to her?

I’d like to go over some of the thoughts on this:

It’s none of your business

One of the most obvious answers and likely to be the most common is that it’s none of your business. They’re not friends, family.. you don’t know them. If they don’t know, that’s their problem. Let them figure it out in due course.

In theory, if you believe in that sort of thing, everything happens for a reason. If you interfere, you may be altering their course which could have been set for a reason.

But then one could argue.. perhaps you were there, at that time, to witness the autistic tendencies as part of that “everything happens for a reason” path and you were meant to say something…. hmm….

Either which way, is it your place to be making such assumptions of other people?

Will she be offended?

Most of us would assume that acting on behalf of your best interests would be a welcome and appreciated action however we all know better. Parents don’t appreciate other people pointing out their children’s flaws, much less giving them a label… certainly if that label is associated with a disability.

Some parents would even go so far as to hear “retard” in the place of “autism” and be ready to fight you for saying such a thing. Rightly so, the “r” word is not acceptable but many people still think that it and autism are the same thing.

Early intervention is passing them by

With every day spent in this “phase”, they miss valuable opportunities at getting treatments, therapies, financial aides, a shot at school support (IEPs) and so on. They are letting very valuable time slip by which means that in this case, ignorance is not bliss.

We all know the motto and there’s even a news story now that explains it well in terms of insurance coverage: Pay Now or Pay Later

Indeed, it is true. If that mother makes no effort to help her child…. what will the child’s future be like? If you don’t say something… their future could cost them a lot more than what some therapy would cost them now.

Are you certain of their situation?

If it’s a total stranger, chances are you don’t know. This person could be in denial, which means they know but don’t accept it, they could know but just not want to tell others (“a phase” sounds so much nicer than “disorder”) or this person could truly just be oblivious.

You really don’t know.

You also really don’t know if it’s actually Autism. Perhaps it’s something else (yes, there are other disorders which look similar). Perhaps, and this may shock you, it actually is just a phase. Yes, these things can be a phase in some children that they just move on from.

If you’re not a trained professional, and even then, it’s iffy, is it really your place to make all of these assumptions about their situation?

A responsibility to each other and our community

If you saw someone about to put their hands into a wood chipper… and you knew they’d lose their hands and struggle for the rest of their lives from that moment on… would you do something to stop it?

Do you have a responsibility to help others? Well, in the case of physical harm or death (dangerous situations), yes you do. In fact, you could be arrested and charged if you do nothing…. unless you’d be putting yourself in harms way to do it. Anyway.. you get my point.

In this case, it’s obviously not that black and white and Autism certainly isn’t life or death (although some would argue that with the number of wandering cases in the news continuing to increase).

But for the future of that child, maybe even the parents (if the child remains dependent for life) and even for the community around you that may have to pay for this child should he end up in a care home… if you say something now, you could help avoid all of that.

If you say something, the parent listens, a diagnosis is made, resources made available and all goes well…. the child’s life, parent’s life and even the community itself could benefit.

Conclusion – It Depends

Ultimately, there is no right or wrong answer.

Some situations are more obvious than others, some people seem more receptive than others, some people are better at broaching the subject with others… so the answer has to be… it depends.

Still though, I think the odds are that no.. you shouldn’t. There are more reasons not to than there are reasons to do it.

It’s unfortunate that autism still has such a stigma attached to it that suggesting such a thing would be so offensive.

Perhaps, as society grows and awareness (also understanding and acceptance) of Autism increases, maybe then it would be more acceptable to talk to a stranger about it like that.

I dream of a day when people are aware and unafraid to hear that their child may have Autism. Not that Autism is such a good thing but they know more about it and more about what to do should their child be diagnosed with it.

Right now, it’s still very much unknown among the general population. It’s a mystery. People know there is no cure. People know that it’s very expensive for therapies and treatments. People don’t know what Autism really is or that some people do live a very full and rewarding life with Autism.

With further education, with further understanding and acceptance, perhaps the answer to this question will be far more obvious… and far more positive. And when that happens, everyone will benefit from the kind word of a thoughtful stranger who only wanted to help.

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We ask to not be judged and yet…

By on July 11, 2011 in Autism, Autism News

When I started the project ‘Autism Understanding and Acceptance’, I did it with the intentions of helping those without Autistic children to better understand and accept people with Autism as well as the parents that do have children with Autism.

I knew though, that it also meant doing the same for parents that do have Autistic children. Far too often I’ve seen parents disagree, quite vocally and with much anger, where one has a child with Aspergers or “high functioning” Autism and the other has a child that is far lower on the spectrum, much more severe (nonverbal, not toilet trained, etc.).

A recent news story

This morning, I saw this news story where a woman abandoned her 10 year old, severely Autistic son to a hospital. He was just left there to wander the halls. When they found him and talked to her, it turned out that she was bi-polar, unemployed, has 2 other children, going through a divorce and being evicted.

Along with the story were a lot of comments, including extra comments from those who posted it on Facebook and so forth. Some were with some level of understanding while most were very judging…. some were even full of a lot of hate.

So I copied the link and shared it in a couple of places, asking what people thought… and one such place was my Autism Understanding and Acceptance fan page. I picked this place in particular for a reason.

The authorities press no charges, her peers do

In the article, it states that the authorities are not pressing charges. They are instead, focusing on the child and making sure that he gets the help and care he needs.

Parents on the other hand, not all, were pretty quick to pass judgment. Many stating “you just dont leave your kids” and “our kids aren’t throw-aways”.

Many parents, feeling for the child, imagine his loss, his confusion… he no longer has any semblance of his past routine, he no longer knows anyone at all and he no longer knows where he is. He must feel terrible and afraid.

How quick we are to judge

less judgingThe truth is though, that not one of us has walked a mile in her shoes. The truth is, not one of us knows her story, his story or what preceded that day.

The article tries to paint the picture with a quick list, as I did above (eviction, divorce, unemployed, etc) but that only gives us an idea.

The fact is that we don’t know how hard it really was for her, we don’t know for how long she struggled with this decision, who she talked to about it, what advice she was given, what her other choices were (or weren’t).

For that matter we don’t know what other assistance she tried to receive. Did she exhaust all of her financial options (there’s not always a lot of support from the government if you’re unemployed), did she exhaust all the options her local charities/groups could afford her? Did she get turned away from medical facilities for having no insurance or even for having her own disorder (bi-polar) to contend with?

We all know how hard it can be to get proper services and yet we’re quick to suggest that it would have been so simple for her to have the resources handed to her to avoid her having to resort to abandonment.

When you’ve met one child with Autism….

Another truth is, we don’t know just how hard it really was. I know it’s hard raising my 2 boys, one with Autism (not severe) and one without. This woman had 3 children… and one had severe Autism.

And in our minds, we can picture that… but some small part must also be saying “I don’t really know because I’ve never met him.” The reason for this is that it’s exactly what we tell teachers, doctors, professionals, other parents and everyone else when they tell you “I know what it’s like”…  no, they don’t, because each child is different.

Furthermore, each parent is different. Some people simply aren’t good parents. Some people are really NOT good with special needs children. Not everyone has the same patience, tolerance, understanding, stress, anxiety and coping levels that we might have.

Would I have been able to do better than her? Would I still be caring for that little boy? I’d like to think I could but you know what, I can’t say that. I can’t possibly know.

My children aren’t like hers. My situation isn’t like hers. My life isn’t like hers.

Understanding and Acceptance

It’s not exactly hypocritical but it’s pretty close, to judge this woman harshly and then ask others not to judge us.

When my son hits the floor at the grocery store, kicking and screaming, I deal as best I can but most likely I’m just paying the cashier to get us out of there. Other parents judge me. I can see it, I can hear it, I can feel it. And I hate it.

I make a very conscious and concerted effort to not judge others in the same way. When I see a screaming child, I look at the parent and smile. They know I’m thinking “It’s ok.. don’t worry about it.”

This situation is far more extreme but it’s no less different. We can not ask for others not to judge us all the while quickly, and vocally, judging another parent at the first media story we read of her.

Media stories seldom tell the whole story, media stories rarely are as accurate as they should be. But even still, from this media I can take a few points:

  • The child was 10 years old. That means that for 10 long years, she did her very best. She tried for everything she was worth and probably made huge sacrifices. Who knows how much the other 2 children missed out on while that boy needed so much attention. She didn’t just throw her hands up and give up on her first day.
  • We don’t know how hard it was. The article doesn’t say she was crying, but it doesn’t say she wasn’t sad about it either. It was very likely, one could assume, that it was a very very hard decision for her. After 10 long years, giving everything she had, she had to give him up and hope for the best.
  • She could have done far better than leaving him to just wander a random hospital but she could have also done much worse, take Casey Anthony’s story for example.

I would never give up my children but it doesn’t take a lot of television watching to realize that not everyone is parenthood material. Not everyone that has children should have children. And many of those people recognize that. It might not be right, but I can respect that. If they’re willing to do their best, and fail, and admit that they can’t do it.. I’d rather they gave up that child.

Adoption agencies are there for a reason. You can judge a person for giving up their child but for some people, they just have to. They aren’t you. The child may very well be better off with someone else than with a parent that only pretends to be a good parent… someone that may end up hating that child enough to do harm.

A person that snaps is a dangerous person. People can be pushed over the edge and that edge isn’t the same distance for everyone.

As part of understanding and acceptance, I recognize that not everyone can raise a special needs child. Not everyone can live through the same stresses that I can. Not everyone has it as easy or as hard as I do. And no one… not one person, is the same as me or my child.

Maybe I don’t always understand and maybe I can’t always accept… but that doesn’t give me the right to judge.

Understanding and Acceptance isn’t reserved for those without special needs children. I think we all could do with a little more of it.

 

Update 10:26am: This news piece shows the mother in court, explaining why she did it: http://www.wsvn.com/news/articles/local/21004795218839/

Comments { 16 }

Autism Understanding and Acceptance – in Video Form

By on June 16, 2011 in Autism

Sometimes a blog post just can’t properly convey how a conversation would go, so I decided to put together this little video as an example conversation between two parents.

I’m quite happy with how it turned out and hope to make some more soon. It’s less than 4 minutes, I hope you like it.

Comments { 3 }