LIFE IS A SPECTRUM

berenstainbears_doctor

Both my kids have stomach flu again ... which reminded me of the last time this perfect storm of illness hit our family. Because everything in this post pretty much still applies, because my kids have probably passed this on to any number of other unwary children in their classes, and because I'm just this lazy, I'm going to repost my thoughts on ...

Sickness and Autism

Originally posted: 02/19/2010 10:55 am

I'm starting to think our family is being targeted by some insidious form of biological warfare. Their weapon of choice: stomach flu. Brilliant when you think about it: no one suspects foul play and you slowly sap your targets of their will to dress themselves.

I'm not sure what the goal is of this particular terrorist cell, considering we have most of our assets tied up in our extensive collection of Thomas the Train engines. [update: We have diversified into solar system toys and iPad apps.] And we don't have time for any political activism. Heck, we don't even have time for physical activism.

But we're sick again. And when Billy is sick, it's like living with a dozen sick children. Everything is so much worse, so much more terrifying for him. For a child sensitive to the slightest changes in his sensory input -- vestibular (balance/gravity) and olfactory (smells) being some of our particular bugbears -- having a stuffed up head and upset stomach is his idea of living hell.

Actually, I should say that it's one step removed from his living hell: True Hades would be sickness and a visit to the doctor. He has an absolute terror of the pediatrician's office, or any office that looks like it might be harboring a pediatrician somewhere. He had a complete meltdown the first time we visited daycare, because they had a window at the front much like the doctor's office.

We don't go to the doctor unless absolutely necessary. He does get vaccinated -- we have that to look forward to again on his fourth birthday. [Note: we survived that visit amazingly well in the end.] And he's had stitches and antibiotics at various times in his life. But finding a doctor with the patience and bedside manner to deal with what some people see as histrionics is rare. Our hometown doctor, Dr. Greg Sloan, was always amazingly patient with Billy, even though pediatrics and certainly autism were not his specialties.

We've adopted a certain routine when it comes to the doctor, which doesn't eliminate the problem, but does seem to minimize it to a degree:

1. We make sure the doctor's office is well informed about Billy's autism and how autism manifests itself in Billy. Every autistic child is different, so they should know ahead of time that he's strong, likely to be very scared, and may scream. We also warn them not to touch his head unless absolutely necessary.

2. We start talking to Billy about visiting the "Nice doctor" early in the day. We get out his toy medical kit, give his bear "Tah-Tah" a quick check-up, read a few books about visiting the doctor, and let him give us a checkup, checking our heart with the stethoscope, checking our temperature, etc. Then we let him take his doctor kit to the pediatrician.

3. Whenever possible, get the last available appointment of the day. If he does get upset, then we don't have to worry about upsetting quite so many children in the lobby. Also, it means that it we have to wait, the lobby isn't crowded with other new people, which can upset him when he's sick.

4. Weather permitting, one of us strolls him around outside, while the other waits indoors to hear his name called.

5. We insist on the thermometer that can be gently run across his forehead. He still doesn't like it, but it beats the pants off the one they have to stick in his ear.

6. If the doctor is wearing a white coat, ask them to please remove it before coming in the room. And we give them the warning about touching his head again.

7. Whenever possible, we touch Billy for the doctor, such as holding the stethoscope against his chest, using the thermometer, etc. We obviously can't vaccinate him, but the less he gets touched by a stranger, the better.

8. Hold on tight and keep telling him we love him.

With any luck, we won't have to go to the doctor with this round of flu. But I've been reading "The Berenstain Bears Visit the Doctor" just to be on the safe side.

Reader Comments

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I hope everyone is feeling well soon!

I hope the kids are feeling better soon, and that no visit to the doctor is necessary...

Hugs,
Wendy

Awwww...Hope everyone is feeling better soon. Sending virtual popsicles for the kids and vodka for mommy. =)

Total 3 comments

I keep wanting to stop writing about Jenny McCarthy, and the crazy just continues. More on that later ...

willowprincesseating

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.

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Boy, talking about vaccinations is like stirring up a hornet's nest. I've gotten some really interesting emails in the past 24 hours.

jenny-mccarthy

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.

Reader Comments

Vaccination Debate, Part II

Yes, it would be nice if we could coalesce around the common challenges that we face in the future, like getting insurance companies to cover speech therapy, like finding employers who will be willing to take a chance on hiring an adult with autism. Instead, it is much easier to be arm chair judges, so that's what we do.

I am with you on your take on this debate. As a pediatric ICU nurse, I watched healthy one month old babies gasping for precious air due to the whooping cough they caught from someone who had not been vaccinated against pertussis. I also watched a child suffer permanent brain damage from brain swelling caused by measles. Both of these diseases could be like smallpox, that is, eradicated from the U.S. and vaccinations not even given for it since 1972, but they aren't and they won't be and there is a reason why.

As you and I have discussed, in hindsight, the more subtle signs of autism were there early. I personally think autism is a genetic disease that is prompted by environmental factors. That COULD be vaccines, but I do not believe that vaccines, in and of themselves, cause autism. If you don't have the genes for it, no autism. Then again, maybe it was the water I drank as a child of the 70s or maybe it was the thousands of microwaved meals I ate in the 80s. Or, maybe it was something my mother took when she was pregnant with me in the 60s, back when women routinely smoke and drank alcohol during pregnancy. I don't know.

But I do know this; everything that EJ needs now is not going to helped by spending time, energy and money discussing how he got here. What is done is done; the challenges we face as a family living with autism are now and in the future. So, for me, enough with the division in our community over vaccines. Let the scientists do their research...I work with many of them and they are committed to figuring out that part of the puzzle. Let's move forward in getting our children the help we need from the insurance companies that I pay thousands of dollars a year that will cover other neurodevelopmental disorders, but won't cover services needed by my child with autism. Let's support each other through our frustrations and disappointments with the laughter and humor that only the parents of children with autism can understand ("Two guys with autism walk into a bar..."). Let's work to change our society's perception of what they think our children are supposed to be, instead of who they really are.

JD in TLH

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