We made a few changes to the website over the weekend. I say "we," when I actually mean that Dave made changes to the website while I did 45 tons of laundry. That is apparently what "we" did instead of taking down the "Happy Birthday, Princess" decorations, which are now in danger of becoming a permanent part of our interior design. Well, my birthday is in May so I suppose I could just have the world's first 39-year-old Disney Princess party.
At the right, you'll find a list of the most recent blog posts, as well as what people have had to say about them (under "Comments"). If you want to make a comment, just press the "New Comment" button under a blog post and let me have it!
"News" is a new section we've added, because I got tired of searching for "Autism" and "News" every day, and Dave found this cool site that would let me stream it all directly to my blog.
And on that note, Friday is World Autism Awareness Day, a kickoff to April being Autism Awareness Month.
I know I'm opening a can of worms here, but I have to say that I'm kind of ambivalent about the whole "awareness" months and days and ribbons. Not that I think any of it is bad. I just don't know if that's the best use of money and energy.
We could have a thousand people in Tallahassee get together and do a walk for autism awareness. And that would make a great photo on the front page of the Democrat. And we could all wear ribbons that look like puzzles ... and then what?
While we're doing a walk-a-thon, school budgets are getting cut and there are already fewer speech and occupational therapists servicing more autistic kids in the school system than ever. Or not servicing them, because they just don't have time. Billy, luckily, is getting exceptional services from his school system, but I know that there are backlog of kids in schools across the country, waiting to be evaluated before they can even begin to receive treatment. I've spoken to their worried, exhausted, frustrated parents. Believe me, they're aware.
We can raise more money for research, but if we keep researching the same thing over and over again (vaccination-autism link, which has been studied more than 20 times by the CDC alone), then how much progress are we making? I cringe at the thought that Autism Awareness Month is going to bring a host of new opportunities for Jenny McCarthy to preach her hysterical non-science to unsuspecting crowds.
And sometimes "awareness" seems like a consolation prize: We can't cure it. We don't have the funds to adequately treat it. Researching it is a political snakepit. So we're going to hold a rally, name a month, and make everyone aware of it.
As I write what sounds, even to me, like a cynical, smug excuse for doing nothing, I can hear a little voice in the back of my head asking, "So smarty-pants, what are you going to do? What's your big idea?" For some reason, this voice always sounds a little bit like Pee-Wee Herman.
I didn't have a plan when I started writing this, but now I've kind of talked myself into a corner, and I'm going to make a commitment to you: I'm going to call and write to every local, state and federal government official I can find until I get some answers as to why we don't have more therapists in the school system, and an expedited system for getting kids into treatment. For many families school-provided therapy is still the only autism treatment to which they have access.
I'm going to share the information I get with you and maybe, together, we can all figure where the logjam is and who I need to call or write to next month. Because as much as I'd like to think that Yoko Ono, our new World Autism Ambassador, is going to get everything sorted out by April 30, I'm pretty sure I'll still be making phone calls by the time the November mid-term elections roll around.
I'm totally open to hearing the opposing point of view about the necessity of Autism Awareness Days and the important strides that have been made because of them in the past. I'd be happy to find out that I'm completely wrong on this one, because I want to think that the time and money that's going into promoting this is well worth the effort and resources.
I keep wanting to stop writing about Jenny McCarthy, and the crazy just continues. More on that later ...
First of all, I'd like to report that Willow had her one-year vaccinations yesterday, and suffered no ill side effects. I gave her a half-dose of Tylenol in case the injection sites hurt her, but she didn't run a fever, certainly didn't have any seizures or weird reactions, and celebrated her milestone by saying a new word today: "GO!" a command she delivers imperially with an energetic pointing forward of the finger. She's taking this whole "Princess" thing a little too seriously.
And speaking of the Princess/Fairy Tale birthday party, it was an enormous success. Willow had the time of her life, despite not being able to take a ride on the roller coaster or jump in the trampoline with the other kids. But a greater incentive to start walking I couldn't imagine.
I was ambivalent about the whole princess theme to start with. As Dave pointed out, staring at this giant poster of Disney princesses that adorned our living room, "Their wrists are bigger than their waists." And they're all built like Playboy bunnies. Even Tinkerbell has received an "extreme makeover," which seems to have included a trip to the plastic surgeon.
But you don't have to look much further than the covers of magazines that adorn every newsstand to realize that our daughters could do worse than to look to Disney's fairies and princesses as role models. Modern princesses like the mermaid and Pocahontas at least seem to be capable of solving their own problems, unlike poor insipid Cinderella and Snow White. And as for Mulan, she kicks booty. Of course, Mulan doesn't make it on to the Disney princesses mega-poster. But Sleeping Beauty does. And she spends most of the story asleep.
At least she's not getting drunk in night clubs, falling out of limos and uploading sex videos of herself to the Internet. It always disturbs me to see how many little girls turn up to a Paris Hilton book signing or want to meet Hugh Hefner's "Girls Next Door" when they do a public appearance. Really. There are mothers who drive their tween daughters to a Playboy event. Apparently, there are even parents who buy stripper poles for their little girls.
So in light of all that, I guess I can grit my teeth at the whole Disney princess thing for a while. We still have the mega-poster up in our house, because every time Willow passes it, she points, smiles and says, "Ooooooh." Ariel's her favorite, and by the time she realizes that "mermaid" is not a potential career path for her, I will have had plenty of time to woo her with the stories of cool ladies like Madame Curie, Harriet Tubman, Florence Nightingale and Eleanor Roosevelt.
In fact, March is National Women's History month, so it's a great excuse for us to talk to our daughters about remarkable women, whether those women are famous historical figures or phenomenal ladies in their own family or friends' circle. They may not wear a tiara or ball gown, but our hard-working mothers, teachers, nurses, female police officers, political leaders -- deserve crowns for what is probably, on most days, a thankless task.
And speaking of role models, I have another reason that Jenny McCarthy should not be a spokesperson for anything but Crazytown. Apparently, before this former Playboy model became the spokesperson for the anti-vaccination crowd, she was the host of a website called IndigoMoms.com. This site was for people who believed their children were "Indigo" or "crystal" children. Indigo children, they claimed, are the next evolution of humanity.
I quote from the archived website: "Indigos are extremely bright, precocious children with an amazing memory and a strong desire to live instinctively. These children of the next millennium are sensitive, gifted souls with an evolved consciousness who have come here [my note: From where???!] to help change the vibrations of our lives and create one land, one globe and one species ... You can have the Aura of your child photographed (white t-shirt in front of a white wall is best) and analysed to see which type your child is." Really. Now, I believe my son is extra special too. But I don't think he's from another planet. Jenny McCarthy, though, may be.
There was a column from an "angel therapy practitioner" (Ask the Angels), one written by a "certified Indigo healing facilitator," as well as one written by McCarthy herself, in which she describes the day she found out she was "an adult Indigo." The angel practitioner, McCarthy claimed, had a direct line to the Archangel Michael. I am not making this up. In the words of one guy posting on the Science-Based Parenting blog, "This is what happens when hippies find the Internet."
So anyway, when her son was about three years old, Jenny McCarthy believed he was "a more highly evolved species." But if you hear her interviewed these days, she claims that something was "wrong" with her son immediately after his 18-month MMR jab. No mention of the impact that vaccinations had on his aura. No mention of how his autistic traits were actually signs of his more highly evolved soul.
Up to 2007, McCarthy was still promoting this nonsense. Eventually, when she decided that her son was, in fact, autistic and that vaccines were to blame, McCarthy shut down the Indigo site and distanced herself from this kooky group.
So just keep all this in mind if you ever find yourself slightly swayed by any arguments Jenny McCarthy makes. She was just as passionate in her support of building schools to support students' auras and communing with the Archangel Michael through her angel therapy practitioner.
Just because she's been on Oprah doesn't mean she's qualified to give medical advice. Former English soccer player David Icke believes the world is run by giant lizard people; he got interviewed on a LOT of talk shows. But I'm not going to be calling him up for tax advice next month.
Boy, talking about vaccinations is like stirring up a hornet's nest. I've gotten some really interesting emails in the past 24 hours.
Yesterday, I blogged about my decision to vaccinate my kids. And the fact that Jenny McCarthy really really irritates me, because she rejects any science that conflicts with her personal opinions and accuses mothers who don't agree with her of not being willing "to do what it takes" to "cure" their kids' autism. I said that makes me want to punch her in the mouth, though she'd probably beat me up. Then several of my Facebook friends made some interesting comments, including several offers from some of my women friends -- beautiful, smart women whose input I regularly rely on -- with offers to beat up Jenny McCarthy on my behalf.
I joked that it sounded like a Pay-Per-View event, and we could air it as an autism fundraiser: Foxy Boxing for Autism. And various moms -- as well as women who just dislike Jenny McCarthy -- could take turns punching her in the mouth and explaining science to her. And another friend pointed out that one of the spokespeople for Autism Speaks was going to be on Celebrity Apprentice, so maybe we could get The Donald involved.
Last night, emails start rolling in. Apparently, some people didn't realize I was joking. And I'm flattered that you think I have clout to put such an event together, but I really don't think I could convince Donald Trump to get involved -- much less Jenny McCarthy. And no, I don't actually believe that Foxy Boxing for Autism is a good idea.
I probably did get a bit caught up in the exchange and come across as being a bit glib on the subject, when in fact, I'm not glib at all. I'm irritated, frustrated, often angry, sometimes scared and exhausted by the vaccination debate, but I'm not glib.
However, I refuse to stop laughing just because I have an autistic child. And this may shock some people, but sometimes autism is funny. We don't laugh at Billy, but we laugh about the things both are children do -- just as parents of normally developing children laugh. We didn't give up the right to smile when we had a child with special needs. We don't walk around with wounded expressions on our faces all the time, taking offense at the slightest comment. What a miserable life that would be.
Someone did make a good point though; one commenter pointed out that I claimed I wouldn't judge people who choose not to vaccinate their children -- when, in fact, my entire blog post was a judgment against said decision.
I'll give you that one. Saying, "I won't judge you," sounds good, but it's a lie. I'll say that I try not to be judgmental, because I know how hard it is to make any decision about your kids' health, to follow through, especially if your decision flies in the face of known science. But that is not what I judge you for.
No, my judgment -- and yes, it is there -- comes when you expose other people's children to risk. Some of those kids might not be as strong as your child. They might not be old enough yet for certain vaccinations and increasing their risk of exposure to disease should not be your right. So think about that the next time you go to the Health Department and tell them you're Amish so that you can get exempt from vaccinating your kid. You're making a decision that will affect all of us.
Now I'm done talking about this. It's tiresome and I've heard all the arguments a million times. So if you have any more to say about the evils of vaccination, please email Jenny McCarthy instead. And while you're at it, ask her if she's interested in Foxy Boxing for Autism.
It's time for Willow's one-year vaccinations. No mom likes "shot days," but for the parents of autistic children, it's particularly fraught with stress.
Despite overwhelming scientific evidence that there is no link between vaccinations and autism, the debate continues. Court cases continue. The number of parents opting out of vaccinations increases and the cases of measles and whooping cough increase.
I understand the fear. There are times I feel it, strong and heavy on my chest, pressing me to make judgment calls that conflict with my rational brain.
But that's not how I make decisions for my kids. If I did, I would never let them out of the house. The world is teeming with scary "what ifs?"
No, my kids, even my autistic son, will be vaccinated.
There was a time when I believed Billy's problems started at about 15 months. It's a fact that he said a few words at 11 months, and by 15 months, he had stopped almost altogether.
However, having a "neurotypical" daughter -- that's what we say in the special needs community to avoid using a meaningless word like "normal" -- I realize all the things Billy didn't do much earlier. He never pointed -- still hasn't, actually. He never handed me things and then asked for them back. His babbling, unlike Willow's, didn't sound like attempts to communicate. The sounds were more repetitive. And getting our attention -- or giving us his -- was never high on his agenda.
I'm fairly certain Billy's problems were there, in one form or another, from birth. Those challenges are just easier to identify as kids get older. Their differences from their peers are more apparent, because more is expected of them.
I'm quite literally tired of the vaccination debate. But it's a familiar tiredness. It's the same weariness that threatens to swallow me when I face many of the questions about autism: Is this therapy or that therapy actually doing anything? Is he making gains or am I just wanting to see improvements? Does this new treatment have any science behind it or is someone else just after our money? Do I need to invest the time and energy in educating myself about some new breakthrough -- or can I bribe Dave into reading about it?
We're willing to try anything. We've tried the gluten-free, casein-free diet. We've done Therapeutic Listening, music therapy, weighted vests, brushing therapy (imagine brushing a horse and then insert the image of a ticked-off three-year-old into your vision), fish oil, magnesium supplements -- there is no investment, financial or time-wise that we are not willing to make. We would happily bankrupt ourselves to save our child. I have taken a break from my career to be a full-time mom, and that has been the best decision I've ever made. Every spare minute we have we happily offer up to our babies with joyful hearts.
So when Jenny McCarthy goes on Larry King or Oprah and says that she "cured" her son's autism because she was willing to "do what it takes," I'll be honest, I want to punch her in the mouth. And I'd probably get beat up because she kind of scares me.
But she should know that my son's not still autistic because we weren't willing to do what it takes. We are. We so are. I have tried things (yep, brushing therapy) that would have made me laugh out loud a year ago. I have invested in things that two years ago I specifically said I would never try. I will not judge you for trying anything -- as long as it's not harmful -- to save your child.
So I'm not going to judge you if you decide not to vaccinate your children. I just want to put my position out there, because if there's some mom who is being pressured to avoid vaccinations and wants to hear from someone from the other side ... well, here I am.
I've read the science. I've debated the topic with my husband, with other moms, with therapists and doctors. I've wracked my brain and spent many sleepless nights sifting through the facts, the emotions, the fears. I've sought the opinions of friends and strangers in the medical and science community. I've listened, I've argued, I've questioned, I've read. And I've come to a decision.
If the science changes or evolves, so will my opinion. And if you'd like to discuss my reasons further, feel free to contact me. But not on Wednesday, because that's the day Willow's getting vaccinated.
The Grinch Who Stole Autism Awareness
Monday March 29 2010 10:27:50 am
JD in FL
From Amanda
Wednesday March 31 2010 11:23:56 pm
Amanda Broadfoot
Some thoughts on research
Thursday April 01 2010 10:11:02 am
Carrie
From Amanda
Friday April 02 2010 05:27:19 pm
Amanda Broadfoot
World Autism Awareness Day
Tuesday April 06 2010 01:42:23 am
Stacy Fin
Total 5 comments