Sunday, March 16, 2014

Making Memories

Almost every day when I ask Ben what he did at school that day, he says, "We had a fire drill."  They don't really have fire drills every day at his school, but I know that when they do, it makes a strong impression on him.

Whether it's that time flows differently in his mind, or that he knows what I'm asking but only the fire drill memory comes to his mind right then, I feel a strong sense of similarity between Ben and Naoki Higashida, who wrote The Reason I Jump about his own autism at age 13.  I've blogged about Ben's memory surprising me before.

The other day, I arrived a little early to pick up Ben and got a chance to speak with one of his therapists.  She told me she'd had an interesting conversation with Ben when a helicopter flew very close to their building.  Ben ran over to the window to see:
Jessica: Ben, what do you see?
Ben:  It's a helicopter.
Jessica:  Where is the helicopter?
Ben:  It's up in the sky.
Jessica:  Would you want to fly in a helicopter some day?
Ben:  Yes, I want to fly.
Jessica:  Where would you go?
Ben:  I would go to North Carolina.
She was a little perplexed as to where he came up with that, and Ben couldn't explain it well enough.  I knew right away.

Beach Walkabout
Last Thanksgiving, we got to spend the holiday with some dear friends and their wonderful kids by the ocean in North Carolina.  In addition to the holiday, we celebrated C's 50th birthday playing boardgames, eating well, and enjoying the heck out of each others' company.

Ben started every day at the crack of dawn with a walk on the beach, no matter how chilly.  He would go for miles, playing tag with the surf, and zipping up and down the dunes.

These were good times - we saw ships and dolphins and all manner of things washed up on the beach.

He loved being around everyone, but walkabouts were required 3 or 4 times a day to settle his mind.

We all built some lasting memories there.

Another event recently made a big impact on Ben's psyche, at least for a few days.  Lovely Wife brought Ben to the Utah House Business and Labor Committee hearing for our bill to bring insurance coverage for autism to Utah.  The hearing room was packed with people...many of them families affected by autism.  The tension was so strong and palpable, Ben could barely stay in the room.  I'm convinced it's the reason for the emotional struggles Ben had in the following days.  It was like a big rock had been tossed into his mental pond.

The end result of the hearing was a unanimous committee vote in our favor... I know Ben also felt the relief and joy that travelled through the room.  It was such a strong emotional experience, I have to wonder what he'll remember from that day.

Friday, February 21, 2014

Check My Math

I haven't posted for a while...sorry about that.  I've been consumed with  one issue...getting insurance coverage for autism.  If you live in Utah, please read and consider.

Sunday night was kind of weird.  I woke up at 3:00 and my mind started churning about how to get our legislation passed.  I said, "Shut up, mind" and tried to get back to sleep.  Then Ben woke up with a croupy cough.

With a little coaxing he got back to sleep, but I was awake.  Thinking about math is usually a good way to get drowsy.  This time it wasn't so helpful.

I thought about probability.  Bear with me, please.

Assuming autism is randomly distributed:

  • The odds of having an autistic kid in Utah are 1/47.
  • The odds of not having an autistic kid are 46/47 or about .9787.
  • If you have 2 kids, the odds of neither of them being autistic is .9787 times .9787 = .9578 or 95%.

It continues like that - for any group of people, you raise .9787 to the power of the number of people in the group to find out the odds of NOT having one of them being autistic.  

Google will actually do this math.  Here's the whole thing as a formula that works there - just put it in the search bar:  :

  • 100*(1-(46/47)^33
  • 100*(1-(46/47)^66)
  • 100*(1-(46/47)^110)

You put the number of people in the population you want to look at as the last number and it spits out the probability that at least one member of your population will have autism.

  • 33 people gives >50% chance
  • 66 gives >75%
  • 110 gives >90%

You can do any population size you like, just replace that last number with how many people you've got.

You can start with your kids or how many you'd like to have.  Add your nephews and nieces.  Add how many grandkids you have or hope to have.  Plug that number into the formula.  What are the odds?  

If you have a business, how many kids do your employees have?  How many are there in your kid's class?  You can plug those numbers in there. 

This math didn't put me to sleep, and I hope it will be a wake up call for some of y'all.  

We have a bill, SB57, currently in the Utah Senate.  It doesn't fix autism, but it does ensure that autism doesn't break a family's finances when they have health insurance.  That's what insurance is for.  It doesn't directly help families who don't have health insurance, but it keeps those who do from competing with them for scarce resources.

If you live in Utah, please take a moment to e-mail or call your state legislators in support of SB57 - you can find them here.  If you'd like to learn more, visit the Utah Autism Coalition's page.