Tuesday, February 19, 2013

Sun Dog Day

My older son came home the other day with some homework.  He was supposed to come up with an example of a simile and a metaphor.  Having spent the past 10 years as a stay-at-home dad, and the previous 20 being devoted to engineering and computers, I asked him what the difference is.  If I'm going to blog, I should probably know these things.  I'm still a little unclear, but I think I bumped into one yesterday.

Intrepid explorer
Ben likes to go "walkabout".  Even when it's well below freezing and the inversion has us in a red air alert.  Personally, I find it a good deal more fun when the weather is warm and breathing isn't bad for you.

There are always things to do...bills to pay, dishes to wash, Utah legislature tweets to read.  Walks mean a lot to Ben though -- he finds it calming, works his large motor skills, and he usually sleeps better (not this morning though).

Walking isn't really the best way to describe it -- it's more like running an obstacle course or an episode of Wipeout.  He climbs on walls and traverses them like a balance beam,  scrambles up snowbanks, stomps on icy puddles, slides across patches of ice.  Sometimes he says, "hold my hand" when he's going to do something tricky.  Sometimes he runs full tilt down a hill, knowing that I'll help him slow down at the bottom.

If you lost this, msg me.
I don't catch him every time he falls, and sometimes there's a skinned knee or a bloody nose.  I keep him away from cars and dogs and generally try to make sure he's not doing anything life-threatening.  I try to guide him a little so that our path will wind up back home in a reasonable time.  Sometimes I carry him on my shoulders...even when there's been a potty mishap.

We wind up exploring parts of our neighborhood that others don't usually see.  We go through the alleyways, the parking lots, and the stairs that have been blocked by snow for 2 months.  We sometimes find things...so far that's included an ipod, an antique turquoise and silver ring, and yesterday, an avalanche shovel.

Not really a sun dog. (photo from redditor Gonzok)
We also saw my very first "sun dog" (or this, but "sun dog" is a cooler name).  I thought, "Here I am, creeping up on 50 years old, and there's something new.  What the heck is that?"

I don't know where our journey with Ben is going to lead us.  Our path is going to be different from most.  I expect that it will sometimes be hard, but there are new things to discover and we will find them together.  Metaphor, right?

Tuesday, February 12, 2013


18, 532.  That's how many balls were displayed in the Utah-shaped enclosure.  I showed up late to the event on Capitol Hill, and there was only clean-up to do.  I held out a big plastic bag while Home Depot volunteers scooped balls into it with a shovel.  We filled up bag after bag, until the pit was not very deep.

Mirella said, "At some point, it's easier to pick them up one-by-one," so I squatted down and started picking up balls.  After a few minutes, I stopped and looked at the ball in my hand.  This is a child I'm holding.

We had bags and bags of them...big bags, stuffed to the brim, and there were still so many on the floor.  I looked at the bags against the wall and the remainder in the pit.  I wonder which one of them is Ben?

I don't know if this display had any effect on our legislators, but it got me right in the feels.

So, that's a lot of balls kids.  I was impressed by Senator Mayne when SB55 was discussed in the Business and Labor committee.  She was an educator for many years and talked about seeing the impact of autism on not just the kids, but the families too.

I shouted at my monitor when I heard this Fox News story on the meeting.  Towards the 2:30 mark, the reporter says something like "there are about 18,000 parents watching this debate with a real investment in its outcome."  I'm sure it was just a brain fart on his part, but it usually takes 2 parents to make a child, so that would be 36,000.

It's not easy to be the sibling of an autistic kid either.  Utah has the highest rate of children per couple in the country, but let's say it's 2 for easy math.  Two grown-ups and two kids times 18,532 = 74,128 people whose lives will be directly impacted by this bill.  It's not as straightforward as that, of course -- some people have multiple autistic kids, and this bill won't affect uninsured people, and so on.  On the other hand, I'm not including grandparents or classmates or friends or co-workers or any of the other relationships that wind up being altered by one kid with autism.  When you help one kid...just one, you are helping all those people too.

Okay, enough talk...time to go make dinner.  A family's got to eat.

Wednesday, February 6, 2013

Train of thought

3:00 a.m.

The sound of a TRAX train coming down the curvy hill at 400 south wakes me up.  It's more than a mile away, but the wheels make quite a racket as it navigates the fault line.

My brain whirls into activity.  This time last night, Ben woke up with a cough and a fever.  We saw the doctor yesterday, and he can go back to school if there's no fever this morning.

I think about D and S, two friends with kids that we haven't seen in a long while.  They used to live right near the squeaky part of the train track.  We keep meaning to get together, but it hasn't worked out in a while.  Maybe we can see them this weekend if everybody gets healthy.  I think about a friend's birthday party I missed this weekend, how to make Valentine's day special for my wife, and what we should do for the brief overlap of spring break for our son's different schools.


My phone buzzes softly next to the bed with new e-mail.  I pick it up and find spam from my older son's Lego obsession.  I also see the mail I got earlier in the evening from a pediatric neurologist.  We're looking for someone to help us manage Ben's case, and she's been very helpful.  It's another expense that won't be covered by insurance, but we have to do it.

My mind drifts to Senate Bill 55, just introduced this week.  That would be huge for us, and many of the families we've met through Ben's school.  The way last year's bill was put down is a painful memory, but we'll keep trying for as long as it takes.

I'm planning to go to the Capitol to talk to our legislators on Thursday, but that's going to be hard if Ben's still sick.


The cat pads into our room and leaps onto my chest, looming over me like a gargoyle.  She reaches out with one paw and squeezes my chin.  I know she wants to be fed, but no way am I walking past Ben's room.  I am quiet like a ninja, but she will start meowing.  I gently squish her to my chest and pet her 'til she's mellow.
I pet her like a Bond villain and my brain starts up again.

Kitty, do not hop on Pop...

I think about how interested Ben was in reading Hop on Pop yesterday - he was identifying words - maybe just by memory, but that's still encouraging.

The ipad has been great for him.  There's one app that involves lots of matching and prepositions and such.  It makes a silly "boop" sound when he picks the wrong thing and he rarely waits to hear the instructions before he starts touching the screen.  One night I sat down with him in a quiet moment and held the pad out of his reach until the instructions were given.  He was getting 90-95% of things right...things we didn't know he knew.

I think about how I need to learn how to make apps.  A few minor changes to how that one was implemented would make it 10x better for him.  Maybe I could even make some money that could help with speech therapy and all those other things our insurance company doesn't cover.

4:30 a.m.

Ben rattles his door.  I slip on my britches and go to check on him.  He's turned on his light and is rocking in his big orange chair, happy as a clam, but bright with fever.