Sunday, March 31, 2013

Negotiation 101 *warning: contains yucky stuff*

The Negotiator
My last post was full of disregard for unproven therapies.  I didn't mention that we've been following a gluten free/dairy free diet for about 3 years.  We don't buy into the theories, but Ben is definitely sensitive to something.

The past two weeks have seen multiple birthday parties, a ski trip, a cupcake making event, and two Easter egg hunts - all with treats that were off the diet.  Being too lazy a parent to provide GFCF alternatives, I told Ben's caregivers to go ahead and let him have the same treats as the other kids.  This led to some really icky results.

Potty training has actually been going very well, but we still use a "pull-up" occasionally - especially when he's been off the diet.  I'll spare you the gory details, but I was in the midst of changing one of these super-disgusting gluten/dairy-fueled poo containment units when Ben demonstrated his aptitude for negotiation.

I looked up from the train wreck in Ben's pants to see him with his finger in his mouth.

Me, panicky:               "Ben!  Are you eating something?!"
Ben, enthusiastically:  "I'm eating a booger!"
Me, authoritatively:    "Don't eat boogers!"
Ben, liltingly:             "I'm eating booooogers!"
Me, exasperated:        "DON'T EAT BOOGERS!"

This went on for a while, until Ben dropped the hammer:

Me, pleading:           "please don't eat boogers."
Ben, with finality:      "Give me candy."

Happy Easter!

Friday, March 22, 2013


Autism is in the national news again - the new number is 1 in 50.  I'm not going to write about that - I'd rather read what Jim has to say.

Instead, I want to share with y'all things I've come across in my new hobby:  reading and responding to comments on on-line news articles.  If it weren't on-line, I'd cut them out and paste them into a big scrapbook.  On the cover, I'd write "Jon's Big Book of Crazy", and I'd decorate it with moons and stars and pyramids.

 I was going to quote the actual comments, but I'll spare you the venom and just summarize.

 Autism is caused by a "leaky gut".

As Hippocrates said two thousand years ago: "All diseases begin in the gut."  He also said, "A physician without a knowledge of Astrology has no right to call himself a physician."

There's pseudoscience and there's actual peer-reviewed reproducible science.  When real science makes a mistake, it fixes itself and moves on.  Pseudoscience survives because we are desperate and want to do something, even if we don't have any proof that it will be helpful.

I think that if you really have a "cure" for autism, and the "mainstream" establishment western medicine won't accept it, then you have a moral obligation to prove it.  I don't care what it takes...there are ways to prove it, and if you really know you are right, you would be evil not to do so.

"Vaccinations cause autism."

 I want to find the guy who posted this and say, "Who are you, who is so wise in the ways of science?!  If you or someone you love are not sure about this issue of vaccines and autism, please go read "Autism's False Prophets".  It's well-written by a good author.

The autism rate is high because greedy people want to make money off of it.

There are much easier ways to make money than becoming a behavioral/speech/occupational therapist,  developmental pediatrician, psychologist, neurologist, social worker, etc.  A lot of the caregivers we've met are underpaid and work long hours with kids who can be pretty hard to deal with.  I'm pretty sure there's no conspiracy behind the numbers.

Behavioral therapy for autism is expensive, but that's because it requires a lot of dedicated time from a trained therapist.  That's very different from having to use an expensive machine or patented drug.

"We don't know what the cause for autism is, how to treat it, how to cure it, and that's why insurance companies don't want to cover it."

The cause is complex. It's probably a combination of genetics and environmental factors. You don't have to know the cause to be able to treat it.

The American Academy of Pediatrics approves Applied Behavioral Analysis (ABA) as a treatment - it's been studied extensively and shown to help 90% of kids who get it. About 50% become able to function like a typical kid in school. Some kids also benefit from speech or occupational therapy. Drugs for hyperactivity and anxiety can be helpful for some kids.

People can improve to the point where they lose the autism diagnosis. Their brains still work the same way, but they've been retrained to cope with it to the point that they can function normally.  It's not a "cure", but it doesn't have to be. 

My grandfather lost his leg...he wasn't cured when he got a stump sock and a plastic leg, but he was able to get around pretty well.

Insurance is mandated to cover autism in 30+ states. The insurance companies there have somehow managed to do it and turn a profit.  In fact, they had enough left over to spend 1.8 billion dollars lobbying our government.  They're still lagging behind the pharmaceutical industry...slackers.

Ok, now I sound like yet another internet crank.  Let's end on a different note.

True story:

My grandfather developed Buerger's disease back in the 30's.  Buerger's affects circulation to your extremities, and can lead to gangrene.   Pop's foot died and turned black and he became very ill.  He put himself on the train up to the nearest hospital in Murray, Kentucky where they told him he had enough poison in his system to kill ten men. 

To start with, they took off half a foot.  This was buried.  Later, they took off some fingers and one leg just above the knee.  These too were buried, alongside my grandmother, whom I never met.  He died when I was in eighth grade.  It didn't surprise anyone, really...he always had one foot in the grave.

Ba-doom-cha.  (sorry Mom)

Sunday, March 10, 2013

Quality time

So, last Wednesday, Ben's older brother (W) was staying after school to help make props and such for the school play.  He's psyched, because he landed the coveted role of Han Solo.  I was supposed to pick him up at 5:00, but got a call about 20 minutes before that from his teacher.  There had been an x-acto knife incident, and I needed to take him somewhere for stitches.

Ben and I hopped in the car, chatting with our pediatrician's office on the way.  We picked up W, who had, in fact, accidentally jammed an x-acto knife into his thigh just above the knee.  It was immediately clear to me that his favorite pants were ruined, and also that he had missed the big artery - yay! 

We went to the new Instacare facility, calling Lovely Wife (LW) to let her know what was up.  The new place was great, and seemed devoid of other patients.  We'd hardly finished check-in when LW showed up and whisked Ben away, leaving W and me to deal with the stitches.  As it turned out, it gave us a little quality time together.

I'm a firm believer that any kid should get lots of one-on-one time with each of their parents.  When you're the sibling of an autistic kid, you deserve more than most.  That's why I don't mind a bit when LW and W go skiing on Sundays this time of year, leaving me with potty training, laundry, and cooking to do.  They have a blast together, and come back with lots of stories and high fives.
Last shuttle launch ever.

In the exam room, I sat admiring my son with a silly grin on my face.  He was handling his wound and my dumb jokes about it with great stoicism.  He listened to my stories about previous trips to emergency rooms with well-feigned interest.  Soon, I realized that I was having quality time with W for the first time in a long while.

Don't get me wrong -- I've had some awesome adventures with just him and me.  We went to Nerdtacular last year.  We got to see the very last space shuttle launch ever (thanks Ma and Pa). 

Winter's not my time of year - I'm from the South and didn't grow up skiing or sledding or building igloos. 

I came to a realization (just a little one) sitting there with W.  Even if it's not "my time of year", I need quality time at least as much as he does.

The nurse came in and said, "OK, you can go now."  W stood up from the table and his face went ashen.  He wobbled a bit and I helped him sit back down.  The nurse offered him an Otterpop and said he'd better wait another 15 minutes or so.  We both said, "OK" and enjoyed our bonus quality time.

Friday, March 1, 2013

Breaking Bad (news)

Have you heard about the Canadian version of Breaking Bad? It's about a high school chemistry teacher who is diagnosed with cancer. He gets free healthcare and gets better. There's no second season.
(Mom:  Breaking Bad is a show about a guy who starts making an illegal drug to save his family from financial ruin.  Things go poorly.  You don't want to watch it.)
Here's the Salt Lake Tribune story about how this year's autism insurance mandate croaked yesterday.  Here's my favorite quote:
"After conferring with House and Senate leadership — I don’t have the support of the insurance industry, and I frankly don’t have the votes for the bill in its original form."
I think Senator Doctor Shiozawa is awesome.  He's intelligent and articulate and I hope he stays in politics for more than one term.  We don't really have a two party system in Utah, but elect more guys like him and it'll be okay.

A couple of things irk me about this.  The bill quietly transmogrified into more pilot program.  The pilot program can help some people, and I'm happy for the kids who get help (assuming it passes).  What irks me is that it happened without public debate.  I want to hear the arguments against it.  I want our elected officials to stand up and say why they won't pass this bill.  Maybe there are really good reasons.  I'd like to know them.

The other thing that irks me is highlighted in yellow above.  Why is the insurance industry's voice more powerful than doctors and people who need treatment?  If their arguments are that persuasive, why haven't we heard them?  Insurance coverage for autism is required in 32 states - has it bit into insurers' profits there?  How much?

Don't worry about us - we're going to get Ben what he needs.  Our family can summon the resources with or without insurance.  There are a lot of families who aren't so fortunate.  Maybe a little high school chemistry can help them...*

*Happy Trouble does not condone the manufacturing or selling of illicit goods or services.