Monday, April 29, 2013

Thunder in the mountains

Spring has sprung
Ben has been making lots of speech progress lately.  Every day or two, he says something new that surprises us and represents a forward stride.  Here are some examples:
  • "Daddy, who's car is this?"
  • "Daddy, I love you too."
  • "What are you making?"
Good stuff!

Ben and I took Tucker for a walk today in the foothills.  When we got some elevation, we could hear construction at a new home site.  Ben looked towards the sound and said, "Daddy, what's that noise?"  If he's said a clear, relevant interrogative like that a year ago, I'd have had a heart attack.

We talked more as we walked along, but he got lost in the serious pastime of "rolling rocks down hills".  I spoke at length and think I convinced him that it was a bad idea to do this over switchbacks.  Only once did I have to yell "Rock!" to warn people below.

I like this particular section of trail a lot - it's a loop, so there's no point where you have to backtrack (that can lead to arguments).  The downside is that bikers like it too - some of them en route to the "bobsled run", so they're getting fired up for extreme doings.

Ben kept stopping (I swear) every two feet to pick up another rock and roll it off the trail.  His red vest made a convenient handle for hauling him off the trail and keeping him out of the way of bikers.  Eventually, I got him to run for a stretch and ignore the rocks.  I stayed as close to him as I could without stepping on the leash he was trailing.

As we approached a blind curve, I said, "Ok, let's walk.  Now it's quiet, so we can hear if any bikers are coming."  There were no bikers coming, but there were a couple of lady hikers.

Quite loudly, Ben said, "Daddy, you pooted!"

Clear, relevant, complete sentence, and accurate.  Yay, Ben!

Thursday, April 25, 2013

Where's my jetpack?

Alan Bean, Apollo XII
On July 20th, 1969, we put a man on the moon.

I had green army men, but I also had little plastic astronauts.  I built models of Saturn rockets and watched The Jetsons, Lost in Space, and Star Trek.

Growing up in rural Tennessee, all that seemed far away, but I read sci-fi with a passion and battled imaginary talking apes across the rolling hills.  In 1977,  Star Wars was a dream come alive.

 In January of 1986, I was in my senior year of college, studying mechanical engineering in Houston.  I was walking from the dining hall past the TV in the commons when the Space Shuttle Challenger blew up.

The next 20 years saw revolutionary changes in technology, just not the space cowboy dreams of my youth.  We got the internet, cell phones, wireless, iPhones,  amazing 3-d videogames, and MMORPGs.  Our U.S. healthcare system may be messed up, but we have mapped the human genome.

2001 was a remarkable year not because we sent a spaceship to Jupiter to undergo the next stage of human evolution, but mostly because my first son was born.  9/11 changed a lot of things too, among other things, pushing us closer to 1984.

In 2011, my eldest and I went to Florida to watch the last space shuttle launch.  For me, that felt like the end of the future I'd been imagining.  Although I'd rather see a public effort, I do take heart from the amazing exploits of Elon Musk and others.

Here we are in 2013.  We don't have jet-packs or flying cars, but in another 10 years, we may have cars that drive themselves.  Nobody's living on the moon, but we do have an International Space Station.  On the whole, mankind is becoming more peaceable and violent crime is down.  Our planet is connected in many, many ways, and when some outlier goes berserk and does something atrocious, it gets seen, recorded, and shared instantly, and society responds.  Through ubiquitous images from cellphone cameras, investigators can travel back in time and find out who the culprits are.

We have some pretty incredible technology.  It's not the stuff I was expecting as a kid, but it's still cool.  We don't have gigantic spaceships, but we do have infrastructures (internet, wireless, GPS) and technologies (touchscreens/GUIs, programmable electronics, cheap memory, cheap sensors, etc.) that can be put together to do some astonishing things.

Here's the important part:

A local company here in Utah is reaching out to the autism community to ask what they can do to help us.  They specialize in home automation, and are looking for problems to be solved.  

According to my source, they  "donate a significant amount of money to Utah disability programs, is (sic) interested in developing new technology to help families with children with disabilities.  They have also expressed commitment to not only developing the products but providing them free of charge to many Utah families"

I've got a few major worries that technology might be able to address:
  • wandering - My son is 5 right now, and loves to "go walkabout".  He would see nothing wrong with doing it by himself.  He often plays in the back yard while I do dishes, cook dinner, etc.  In fact, he's doing it right now.  I would love to have my phone alert me when he's beyond a certain distance away from me.  I don't know what you could attach to him - he loves to be barefoot, so you can't stick it on a shoe.  He won't wear a hat, bracelet, or necklace.  He does like a good chewy tube though - we try to attach them to zippers and such, otherwise he'll chew on his clothes.  Maybe that would work.
  • sleeping through the night - Ben woke up at 2:30 Saturday night, and I couldn't get him back to sleep.  He had another night a few days later that was similar.  I think most kids have some sleep issues, but they're worse with ASD kids, and sleep deprivation is a major cause of stress for their parents.  I've been thinking about purchasing a night vision camera to try to figure out what sets him off.  We live near a busy street, so it could be noise-related...better include audio.  It might also be that his room gets too cold sometimes - we live in an old house and he likes to throw his blankets off.
  • incidents at school - my son goes to a school where I have a whole lot of faith in his teachers and all the staff.  They are some of the most caring and patient people I've ever met (and I'm old - see above).  We won't be at that school forever, and hope to get him in a program alongside neurotypical kids.  Ben is making progress with his language, but until he can really talk for himself, I would love to have some sort of "black box" - audio and/or video to let me see what happened to him during the day.  
  • drowning - it's kind of tied into wandering.  We're doing our best to teach him to swim, but he's not there yet.  I don't have a clue what technological solution you could do for this, but you asked.
  • potty training - I don't know what kind of magic device would make this easier, but I know people would buy it.
Ahead full speed, Mr. Sulu
My kid's only 5.  I don't know what sort of challenges lie ahead for us.  

I can imagine a teenage or adult Ben having access to a "panic button", like OnStar for autistics.  Maybe it could connect him to volunteers (maybe fellow autistics) who could talk him through whatever is happening.

I'd love to hear from people with experience beyond age 5 - autistics or their families.  What sort of gadgetry would help your lives?

Wednesday, April 17, 2013

Autism Ignorance Day

 Autism Ignorance Ignoring Day

Climb every mountain.
Taxes are done, finances analyzed, so we take a trip to CostCo to save loads of money by buying TP in bulk.

Some kids on the spectrum avoid sensory input...ours needs a lot of it.  He made his trip to CostCo bearable by touching every item in the store.  For maximum efficiency, he runs his hand along the displays as he motors down the aisle.  It's kind of like Tom Sawyer with a stick and a picket fence.  And germs...lots of germs.

We were making our way through the frozen food aisle, looking for tasty, tasty salmon burgers and Ben was running his hand along the freezers.

In my fish-deprived state, I didn't notice that a fellow shopper was directly in the path of his sensory vacuum.  She was entranced by some sort of mashed potato oriented frozen dinner.  Ben didn't pause a bit.  He ran his hand right across the back of her thighs, following all the contours.

Were I a lecherous dirty old man, (a) I would not have picked this woman (too much Hungry Man, bless her heart) and (b) I would not have imagined getting that personal.  I'm saying he could have detected a transvestite, were that his purpose.

I apologized immediately, but there was no response.  In fact, there was no reaction to anything.  It was like a spontaneous game of freeze tag had sprung up. A minute later, we escaped around the corner and my last glimpse of her showed her to be still locked in place, staring at the Hungry Man offerings.  AFAIK, she may still be there, switched off until a friendly player unfreezes her.

I've read lots of accounts of non-autism-accepting people letting loose on kids or parents.  I was pretty much ready for that.  I wasn't really prepared for this non-reaction, but okay, I'll take it.

I'm pretty sure that a better parent would have probably turned this into a teaching moment, and maybe some reaction from the shopper would have been better than none.  On the other hand, Ben stayed happy and we managed to spend another 45 minutes in the store with no further incidents.

I know that we need to teach Ben to respect personal space.  We'll work on that.  Part of me likes to think that this lady felt the force of nature that is my son passing over her like a warm, questing breeze and her day was  better for it.