Three roadtrips, THREE

Pedals!

For this year's Utah State Bar convention, we decided to bring friends along for our older son.  We loaded up a trailer with bikes and gear and friends and headed to Idaho.  The trip was great, but the thing I can't stop thinking about is the ride up.  It was about 5 hours with 3 chatty 13 year olds in a car with Ben.

This turned out to be a kind of immersion therapy for him.  The older boys would hold up their smartphones and say, "Look at this funny video" and Ben would inevitably say, "I want to see!"  That may not seem like a big deal, but for Ben it was.

The days spent in Sun Valley were filled with scooters and bikes, and Ben made the leap from strider bikes to one that actually had pedals.

Progress moves in fits and starts, and that week was a leap ahead for Ben.



A few weeks later, Lovely Wife pointed out to me that we hadn't had a non-working vacation in a loooong time.  She has a high stress occupation and when she says she wants a break, it's to be taken seriously.  I am mostly a hobbit, content to stay in my cozy hobbit hole, but she's a bit Tookish.

We rented a pop-up camper.  We have been backpackers and car campers and river rafters, but for the past few years, the prospect of camping just seemed too hard.  Sleep is a huge issue for Ben and sleeping on a pad in a tent makes it that much harder.  Wandering is an issue too, so the idea of having an enclosed space was attractive. I won't go into detail, but having our own portapotty turned out to be extremely useful.

Look at this camping paradise:

(stock photo - otherwise you'd see sleeping bags and juice boxes and legos and rocks and all kinds o stuff)

We headed up to the Grand Tetons.  It's only about 5 hours from Salt Lake.  That may seem like a long way if you're not from around here, but in the West, it's not so much.  Heck...oil has dropped below $40/barrel, and Obama's letting folks drill offshore in the Arctic.

I don't know that these folks are the best, but they were good to us.  The trailer was easy to tow, gas mileage wasn't bad, and set-up didn't take long at all.

Wednesday, we drove in to Gros Ventre campground.  The lady from Alabama who checked us in had a lovely Southern accent and was very helpful.

Actual camper...surprisingly roomy!

Setting the camper up was pretty darned easy.  That's helpful because transition times are ripe for wandering and mischief.  William was very helpful at keeping Ben out of trouble for the 10 minutes it took us to get the site all fixed up.

Thursday, we headed over to the Gros Ventre river and did some wading.  It ranked right up there with our creek back in Tennessee (no crawdads, though).  There was some stone skipping (Ben is pretty excited about finding skipping stones, so yea!).  William shamed Lovely Wife into floating down the fast part of the river, marshmallow sticks were found, and a good time was had by all.

Having a campfire was a big bonus of camping.  Ben, after some work, was consistently able to say, "Excuse me, can I burn this?"  This was important - the question was asked about some things that one would definitely not want to burn.

Friday, we rented some "duckies".  These are inflatable kayaks, and I was pleased to see that new kayaks are way better than the ones I was used to.  Lovely Wife was awesome and took Ben in a two-person kayak while William soloed in his own boat.  They put in just below the dam at Jackson Lake and I went to wait at the take-out point an hour or so downriver for some alone time.

Ben stayed in the boat the whole time!

On Saturday, we checked out some dispersed campgrounds.  We liked the campground we were in, but to be in a place with fewer neighbors where Ben could be Ben without tramping into our neighbors would be really great.  We found a place that we want to try out next time.  I'm pretty psyched.

After checking out the more remote area, we went for a hike around a lake and had a little picnic.  A helpful German man with a large can of bear spray warned us about the Grizzly he had just seen.  We saw pronghorn antelope, bison, and moose on this trip, but no bears.  We did keep them in mind.

I got an idea from the OT sessions this summer - I took a rope, threaded it through the grommets on a spare tarp and strung it between two trees for a hammock/swing contraption.




It worked pretty well for a while - Ben got happy and relaxed.  Then we did some stress-testing to destruction.  Next time, I'll have one that can handle the load.

We headed home on Sunday.  It was an awesome time - everyone (pretty much) unplugged.

A few weeks after THAT, we headed to Big Sky, Montana so that William and Lovely Wife could run in a grueling trail race.  It was a whirlwind of a weekend, and I didn't take many pictures.  We got to spend quality time with some cousins and that was great.  Ben's fascinations for dogs and babies and very small rocks were both a blessing and a curse.

I don't have much of a message with this post, other than to say that it's good to get out and do stuff, (once in a while), no matter how hobbit-like you may be.  All of us, folks with autism included, grow leaps and bounds when we step outside our hobbit holes.  It's a big reason why I married that Took.

Two minutes on Tuesday

I didn't watch for two minutes.

Ben was happily riding his trike in our front yard.  It's fenced in, so I thought he was safe. I filled a batch of ice trays and knelt down to put them carefully in the freezer.  I couldn't see out the front window for about two minutes.

When I stood up, I saw right away that the front gate was open, and Ben was nowhere in sight.  My adrenal gland clenched into a fist and I ran out the front door on red alert.  

I did a 360 and didn't see him.  I loped down the street as fast as I could go - kid on trike always prefers to go downhill.  I could see a pretty far piece and there was no Ben in sight.

After a block or so, a woman on a bike hollered (politely) from across the street:  "Are you looking for someone?"
Me, panicky: "Yes!  A boy on a trike?!"
Her, helpful and neighborly:  "I haven't seen him."

I ran for another couple of blocks, checking down side streets, before I decided I'd be better off going back for my car.  The possible options for how he might have gone were expanding with every heartbeat.

I turned and huffed back up the hill.  After only a block or so, the aforementioned woman-on-a-bike shouted to me, "Your son is in your driveway, and my daughter is with him!"

Immediately relieved, I waved and chugged on up the hill.  Looking ahead, I could see a young lady on a bike, standing guard with a very determined stance.  Nobody was getting past her.

My adrenal system shut down like a 50 year old sprinkler system...thunk.  Asthma kicked in, and breathing got difficult.  I gave the girl a husky-voiced thanks, picked up Ben, and stalked inside our house, locking the inside-keyed deadbolt before beginning the search for an inhaler.

After a short, but motivated hunt, I found one and breathing got easier.  Ben was now swinging on the swing set in our backyard.  The mother and daughter who had helped us were not in sight.  I'd missed my chance to really thank them and let them know how much their help meant.

Ben isn't alone in his tendency to wander.  Almost half of kids with autism are prone to wandering.  We were lucky this time, as we have been with previous incidents.

We've taken a number of steps to prevent wandering in our own family, but we need to do more and we will.

Tomorrow, I'm meeting with our Utah senators to encourage them to support Avonte's law.  It seems to me to be a common sense way to combat wandering.  Avonte's story is a tragic one, but this law would help prevent it from being repeated.

To learn more about wandering, visit AWAARE.

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.

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.
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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.

Life on Mars

This morning, getting ready for SCHOOL!

I've been running silent for a while.  After two years in a school just for kids with autism, Ben started in
a classroom alongside typical kids about 3 weeks ago.  I wasn't sure how it was going to go, so I didn't want to talk about it.

When we started planning this transition back in December of 2012, it seemed simple:  "Oh sure - we'll build a rocket and fly it to another planet  - easy-peasy."

We calmly let the application deadline to re-up at our special school go by - "No problem, Earth is the perfect place for humans, but we should really check out the other planets.  If we want to plan ahead as a species, we need to get out there."

We searched for the right school to attend and experienced some dismay as the options dropped away - "Mars it is!"

We found a company to do ABA therapy in preparation and throughout the school year.  It's expensive and not covered by insurance, but we applied for the Medicaid waiver in hopes of help with the costs.  We had heard it was underutilized, but apparently that's not the case any more.  We were "not selected."  No problem - "Ok, we hired SpaceX.  Between deficit spending and pulling some money out of the Social Security fund (thanks Ma and Pa), we can cover this."

Things went surprisingly well.  Ben's teachers are all we could hope for, and the school has been very welcoming to our therapy team.  Drop-off feels like we have to pull off a Mars landing every day, but other than that, reports are good.

Yesterday morning, at drop-off, we went into the "large motor room" to get some ya-yas out before the day started.  A girl from Ben's class came over to us, and silently handed him a train car that I recognized from home, and then walked away.  Ben held it up to me and said, "She gave me my train.  Oh, that's so nice of her!"  I said, "Who was that?" and he said, "That was Becka." (incorrect, but close)

It's hard to get across how much that interaction meant.  I'll just say, I'm glad we're doing what we're doing.

Jungle Gold: Family Emergency

Not a light topic today...sorry.

One of our friends just posted this to Facebook.  It's an episode of a reality show about two men, George and Scott, who are prospecting for gold in Ghana.  When Scott's 2 YO is diagnosed with an autism spectrum disorder, he flies home to be with his family.

Around 24 minutes into the episode, the wife explains to him that there is therapy that can help their son, but that it's very expensive, and not covered by their insurance because they live in Utah.  Yup...they're from Utah.

If they lived in Alaska, Arizona, Arkansas, California, Colorado, Connecticut, Delaware, Florida, Iowa, Illinois, Indiana, Kansas, Kentucky, Louisiana, Maine, Massachusetts, Michigan, Minnesota, Missouri, Montana, Nevada, New Hampshire, New Jersey, New Mexico, New York, Pennsylvania, Rhode Island, South Carolina, Texas, Vermont, Virginia, West Virginia, or Wisconsin, they would have a still have a scary diagnosis to deal with, but at least they'd be able to access medical help without going bankrupt.

I don't watch TV much, and reality shows less, but this scene really impressed me.  They managed to sum up in a couple of minutes the emotional rollercoaster that so many Utah families have experienced:  getting a diagnosis, then learning that there's therapy that works for most kids, but it costs more than an Ivy League education and is not covered by most insurance in our state.

Thanks Scott and Andrea for sharing that moment for us.

And welcome to the autism community...we're on a road less traveled and it can be hard, but there's a lot of joy and good friends to be found and occasionally gold.

I hope y'all find some gold.

Tag, you're it!

Whoosh!  The month of August is flying by.  It's been a busy one, including my birthday and our wedding anniversary (16 years!).

Last week was chock-full of happenings in the Utah autism community:

• FAAST hosted a seminar for law enforcement personnel at Westminster.  I stopped by to see and was really impressed.  There was lots of good information and the officers were very engaged.
• Temple Grandin was in town, attending the USAAA conference and promoting her new book.
• The Sahara Cares Carnival was Saturday.  It's a very fun event with bounce houses, a DJ, games, etc.  UAC had a booth and we signed up a bunch of new members.

On top of that, Ben has been getting about 25 hours per week of in-home behavioral therapy.  We're hoping this will help with the transition to a classroom with typical kids.  It's been a lot of work for him, but we've seen some positive changes.  Most notably, he's become a lot more conversational.

Ben:  I'm hungry!
Me:  Well, what do you want?
Ben:  I want a popsicle.
Me:  Ok...I'll get you a popsicle.
Ben (looking surprised):  Really?
Me (looking more surprised):  Yes, really!  I'll be right back.
Ben:  Oh, that's so nice of you!

It may seem like little thing, but he's never said "really" before to me.  It's like he's not been engaged enough in a conversation to express surprise or to question a statement.  That's changing.

Last week on a trip to the park with his therapist, Ben saw a bunch of kids playing tag.  He ran up and touched one, saying "tag you're it" and joined in the fun.  That's huge!

Adventure Time

"Are you looking for a boy?"

Those words were sweet relief.  I'd only been looking for a couple of minutes, but every moment since we realized Ben was missing had been filled with adrenaline.

I had been finishing dinner, Bubba was playing a game, and Lovely Wife was upstairs getting ready for the opening reception of the Utah state bar convention.  I thought Ben was headed up to pester his mom, but instead, he squeezed passed the obstacles I'd placed in the hall and slipped quietly out the front door with his truck.

The part of my brain that monitors such things was expecting to hear some exclamations from my wife - something like "No!  Put the make-up down!"  It informed the rest of my brain that it was time to put the pizza down.

"Bubba - see if you can find Ben - quick!"  He hopped up and dashed upstairs, returning quickly after searching all three levels of the condo.  "He's not here!"  Without prompting, he rushed outside to look for his little brother.  I grabbed my phone and went to join him.  He went uphill and I went down.

It was not long before the possible directions Ben had gone branched into something that would require a team of searchers, so when the nicely dressed woman said, "Are you looking for a boy?", I was very, very happy.

Ben had wandered into a reception, outdoors under a canopy.  I loped up the stairs I'd just gone down and burst into the reception, barefoot and clad in t-shirt and shorts.  The party-goers were well-dressed and slightly intoxicated.

 One gentleman pointed across the tent and said, "He went that away!"  I strode through and found Ben, who seemed happy to see me.  I scooped him up and we marched back through the party.  The bartender said, "He was the life of the party!"

Her name is "Rio"

This was our third evening in Snowmass, Colorado.  We're staying in a condo that's kind of like a 3-story shotgun shack.  It's sort of a monument to the 80's, but I liked the 80's pretty well.  They were almost as good as the 90's.

...cue dream sequence...

Yesterday morning, about 3:30, I was riding motorcycles through an airport with my friend, David.  We were trying to get to baggage claim.  I can never read in my dreams, so I couldn't follow the signs.  Also, my motorcycle seemed to be stuck on full throttle.  The escalators were exciting.

I plowed into a neatly stacked pile of luggage (who does that?) just in time to see Ben go through a door on the baggage conveyor.  I woke with a start.

My first thought was "What was that noise?  Is Ben up?"  I grabbed some clothes off the floor and headed downstairs.  Ben's door was shut, so I headed to the first floor and checked the door - still bolted.  The sliding door to the deck was still locked too.  Ben couldn't lock either behind himself, so I knew he was still inside.

I wouldn't be able to go back to sleep upstairs, so I drowsed on the couch until Ben woke up at 6:00.

Aspen child trap...good thing we bring spare clothes everywhere.

Yesterday, I picked up some twine and some delicious New Belgium ale in bottles.  Last night, after putting Ben to bed, I tied the twine to his doorknob and ran it up and into our bedroom.  I tied the other end to an empty bottle and put it in the marble fireplace hearth so it would tip over when Ben opened his door.

It worked like a charm - I got a good night's sleep and the bottle tipped at 5 o'clock.  Beer bottle clattering on marble was not the most pleasant way to wake up, but the sleep before it was deep and refreshing. 

For information on autism and wandering, visit AWAARE.

Imagining Arlie

I'm not a genealogy buff, but occasionally we wind up with a class project that sends me poking into the past and I find it very interesting.  Here's something that happened 91 years ago today, on July 11, 1922.

From the Camden Chronicle:

Arlie Gordon Chester of Eva was drowned while bathing at Oatsvall Landing on the Tennessee River about 1 o'clock Saturday afternoon.  The young man had been working in the vicinity of the landing and had gone to the river to take a gasoline boat home. Hubbs Barker, Eulis Walker and some other boys were in bathing, and young Chester told that he wanted to go in. As he could not swim, we understand the other boys told him not to do so, but he did and soon got into deep water. One of the boys endeavored to save him, but as he was without clothing he could not hold him and was forced to break loose from him to save himself. Young Chester was the son of P.C. and Emma Chester and a nephew of Ben Holland of Eva. He was past 21 years of age and was a quiet, nice boy, unassuming and industrious. His body was recovered at 9 a.m. Sunday morning and was given burial at Chalk Hill Sunday afternoon.

Pop Chester on the left, Arlie in the middle

Arlie was my grandfather's brother.  Nobody's around today who knew him, but we know from family lore that he had a learning disability of some kind.  There are lots of ways to be disabled, but since a good chunk of autism is genetic, maybe he was on the autism spectrum.

They wouldn't have called it that, of course.  The word "autism" wasn't to be used in it's modern sense for another 16 years after Arlie's death, when Hans Asperger described his work in Vienna.  More likely, they would have just called him "tetched".


Whatever Arlie's condition was, I wonder what life was like for him back then.  I read somewhere that rural communities can accommodate autistic people better than urban ones in some ways.  It can be quiet, have little traffic, extended families tend to live together or nearby, and everybody knows one another, at least in passing.

conked out at 3:00 p.m.

Having just returned from a trip to visit my folks in rural Tennessee, I can believe it.  Both our boys found great joy in roaming up and down the creek, skipping stones, and catching fireflies, crawdads, frogs, and moths.  We went on some seriously good walkabouts and we all slept really well, which is rare for us.

critter catcher

Have a safe and happy summer!

And if you're a Utah family affected by autism, come to the Autism Community Summer Social and tell your public officials you'd like autism to be covered by insurance.  It's TODAY!

Lots of stories to tell

Everything's OK.

Sometimes I feel like autism is everywhere I look.  I talk to parents, teachers, therapists, and doctors about autism.  It fills my Facebook feed, podcast feed, e-mail, and a good portion of my thoughts.  I am a little pleased that only about half of what I read is autism-related. 

All this information forms a network that exists in my head/computer/iphone/cloud.  It's my 2013 mental model of the world.  It's not very orderly, but rarely am I surprised when things get added to it.

Ben sometimes likes to drag a partially unwound roll of duct tape around our house and back yard.  Things get stuck to it, and after an hour of wandering, he's usually amassed quite a collection.

We encountered people with autism in their lives twice in the past 24 hours.  Out of the blue, Ben picked up two living, breathing people with his magic duct tape and stuck them right on top of my freaky cyborg mental model of the world.


Balloon Lady

Last night, we went to Bubba's end-of-school picnic.  It was quite a lot of fun.  We spent a good bit of time on the slides and swings.  It was great - Ben's motor skills are coming along and he at least tried to interact with the other kids.  He was listening to them and occasionally interjecting things, even if his voice was too quiet to be heard.  It was especially poignant to see him recognize a kindergarten teacher for a class we tried unsuccessfully to get him into.  He wanted to talk to her, but I don't think any of us knew what to say.

A little girl on the swing asked me to hold her balloon so she could swing more effectively.  We agreed that I would hold it while she got on and then she would hold it.  Ben wanted his own balloon animal and she was very helpful in describing where the balloon lady was.

We ran into Mommy on the way, and Ben stuck with her while I got in the long line.  A few minutes later, Ben showed up with a very nice balloon animal.  Lovely Wife had been hanging out with him at the front of the line where his excitement had been overflowing.  She whispered to me, "The balloon lady has an autistic kid.  She made one for Ben and said to come back when he popped it."  Which he did, of course.  I took him back to Balloon Lady and she graciously fixed the problem, no questions asked.  She was too busy to tell me her story, but I have her card.  We'll need a Balloon Lady one of these days.

Fireman

The second random autism encounter happened today.  After school, Ben and I headed to the grocery store in the half hour that we have before picking up Bubba.  It was to be a lightning strike trip.  I had my list...we would be in and out and in line to pick up Bubba and some friends.  Then I saw the fire truck.  I couldn't resist...I parked next to it.  We got out and ambled over to look.  A firefighter said, "Would you like to see inside the truck?"  He started asking Ben some friendly questions which were met with little coherence.  I said quietly, "He's autistic" and the firefighter took a breath and said, "My two sons have autism - they're 17 and 22."  He looked me in the eye for only a moment, but his eyes held decades of experience.  "Come check out the truck!"  He opened the door and I popped Ben up on my shoulders to see.

We talked a little.  I told him about an idea I have to get autistic kids to meet firefighters, police, and maybe search and rescue people at a barbecue.  It might be worthwhile the next time a kid wanders.  He was just starting to tell me about his kids when Ben needed to leave.  I wanted to hear his story and his kids' stories, but time and tide and autism wait for no man (I added the autism part).

I was struck by twice meeting parents of autistic kids in so short a space.  Thanks, Ben.

Sometimes the steepest paths are the most rewarding.

I have a new role...I'm heading up the Utah Autism Coalition this year.  We're trying to make it so that autism is covered by health insurance in Utah.  As part of that, I feel it's my obligation to bring the stories of Utahns dealing with autism to the attention of their elected officials.  If you live in Utah, and autism has affected your life, feel free to tell me about your experience...anything you want to share, anonymously or not.  If you don't think autism should be covered by insurance, I'd especially like to hear your reasoning.  You can e-mail me at vorpaljon (at) gmail.com or comment here or on Facebook.

Milestone: 6 years old

Put the permanent marker down, Bubba.

We had a birthday party for Ben this past weekend.  It was different from most kids' parties - there weren't a lot of friends his age, for instance.  There were lots of people who care about him though, and he had a really good time.  There was cake (GFCF) and we sang "Happy Birthday" (shh, don't tell the copyright owners) and he liked his presents and there were no meltdowns.

After he went to bed, the grown-ups enjoyed a rousing game of Cards Against Humanity. 

Six feels like a big milestone.  Other milestones this week are that we got confirmation that he'll be in a classroom alongside NT kids in the fall (yikes!) and we finally threw out the stinky diaper disposal unit.  We're not ready to hang a "Mission Accomplished" banner, but things are looking up...

...except for when he's had a big slice of red velvet cake with raspberry filling - that @#*&! almost gave me a heart attack.

Happy Memorial Day weekend, y'all!

Just kidding!

A few years ago, the events of the past week would have driven me up the wall.  Now...right now
at least, I feel like a superhero with a tough layer of armor and rose colored super-vision. 

I won't bore you with the details of the past week, but here are some of the things that were dealt with:

• Flooded basement due to blocked sewer line (thanks, Plumbing Plus!)
• Dishwasher not draining due to different blocked drain - self-repaired!
• Dishwasher losing power due to faulty connection (overzealous self-repair?)
• Corroded sink drain discovered during dishwasher repair (thanks for the help, bro-in-law)
• Mysterious tea-like liquid seeping out of grout in basement bathroom (not going to tell you what that was, but it's fixed)
• Potty training - not very fun when the washing machine is inaccessible
• Allergies (yay spring!)

But you know what?  None of that got to me.  The good things far outweighed them.  Here are some of the good things:

secret training regimen

• Bubba just finished his first season of cross-country running and by all accounts, the boy has a lot of heart.  He's fast.
• Ben is about to turn 6 years old!  Time to celebrate!
• My brother-in-law has moved back to town for a little post-graduate education.  Having an uncle around will be pretty awesome for both boys.
• We had a great Mother's Day brunch with friends.  Hoorah for moms!  (you especially, Mom)

There's more good stuff - the other day, Lovely Wife walked the boys down to a local bistro for dessert while I cleaned up the kitchen. While there, Ben used the restroom - yay! On the way out, a big guy dressed for a date night was getting out of his car. Ben ran up to him and stopped, obviously excited. The guy put on a great smile and said, "How's it going?" Ben said with great enthusiasm, "I pooped in the potty!" The guy said, "That's great!" in a booming voice, gave him five, and walked into the restaurant with his lady. Thanks, Random Stranger, you were awesome!

And finally, I got a hint of Ben's burgeoning sense of humor. When Ben says, "I need to go potty!", I feel like a Secret Service agent responding to a threat to the President. I drop what I'm doing, spring into action and escort him to the panic room bathroom, issuing instructions and offering encouragement. The other day, we had a red alert. Just as we got to our destination and prepared to jettison his garments, Ben put his face close to mine and said, "Just kidding."* We laughed for a good while after that.

I was in this mindset when I came across a video on Facebook that reinforced my feelings.  It's from a commencement address by David Foster Wallace:


Have a most excellent day.

* He's never said anything remotely like that to me before.

Wrong number

So, last week, I got a call while I was making dinner.  It was a market research firm, asking
how I felt about health insurance companies here in Utah.

Telemarketers and door-to-door salesmen are way, way down on the list of things I'm willing to spend attention on.

This time, however, I thought, "I have just completed itemizing my deductions, and having our advocacy efforts for insurance reform squashed for a second year in a row.  Yes, I will tell you how I feel about our insurance company."

To summarize, I gave the insurance company low marks.  I gave our care providers high marks.  Our doctors and teachers and therapists are awesome.  Our insurance plan, which does not cover autism is not.  Our insurance company which lobbies our state legislature to make sure they don't have to, is not.  It is the opposite of awesome.

The phone call lasted for what seemed like a really long time, even though my answers were quick.  I had to hang up on her when the meltdown started (Ben's not mine), but apparently there were a couple more bits to the survey that I missed.

A few days later, they called back.  This time, I didn't answer - potty training trumps all.  The second time, I was exiting a car on a busy street, about to go on a much-needed night out.  I wouldn't have answered, but I thought it might be the babysitter.  I fear I may have been abrupt with them.

The third time was tonight.  Dinner was on the table and Ben seemed relatively stable, so I answered (this is from memory, and may not be exact):

"Hello?"

"Hi, I'm calling from Lighthouse...is this the person who responded to our survey the other day?"

"Oh yes. Ben, put that down."

"We just have a few more questions. Have you seen any advertising for SelectHealth recently?'

"I don't recall seeing any. Okay, I'll get you more juice...eat your squash!"

"How about TV ads?"

"We watch TV over the internet and avoid all ads. Here're some trains."

"Radio?"

"Public radio. Eat your squash."

"Billboards?"

"Okay, I'll get the BLUE train."

(I have to put the phone down for 2 minutes to go find the BLUE train)

"Sorry, billboards? Maybe...wait...I did see an ad on a bus."

"Great! How did it make you feel?"

"I remember thinking SelectHealth...wow I really hate those guys!"

"What?! Why?" (the interviewer sounds amused)

"We were on our way to speech therapy.  SelectHealth doesn't have to cover any of his therapy because he's autistic.  I know that SelectHealth lobbied the state legislature to keep it that way. Use your fork to eat your food, please."

"Oh, ok. Well, that's all my questions. Thank you for your time."

"No, no, thank you. Bye. Do you need to go potty?"

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!

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.

STS-135

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?

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.

Mythbusting

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)

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.

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.

Ba-doom-ch!

(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.