Sunday, September 27, 2015

Three roadtrips, THREE

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.

Tuesday, June 16, 2015

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.

Wednesday, April 1, 2015

Uncharted Waters

About a year ago was the end of the 2014 legislative session.  I wrote a blog post and never published it.  It seemed a little grim for a blog about the "lighter side of the autism spectrum".  I recently looked at it and thought "hmm, still there...maybe more so now."  Today is the start of Autism Awareness Month in Utah (thank you Governor Herbert!).  I'm just going to set this free and get it out of my system.

Here's most of the original post:
The boys

Tonight, I'm waiting for SB57 to come to a vote.  It's an unsettling time.  Years of effort have gone into this and thousands of peoples' futures depend on the outcome.

We don't know what tomorrow will bring.  We don't know if this bill will pass.  We're not lobbyists...we're parents, stomping around in the political arena and hoping for the best for our kids.  For us, it's uncharted waters, but that's nothing new for those of us outside the bell curve.

I'm pretty sure roughly what the future holds in store for my older son.  His name is William, by the way.  Ben calls him "Bubba" and that's what I've called him here up to now, but William is his given name.

Whatever fate holds for him, William will be okay.  He'll go to college, or not (and face the wrath of his parents and grandparents).  He'll meet someone, or not.  He'll "settle down", or not.  It's all up to him.

Ben, on the other hand, doesn't fit inside the norms.  We have no idea what he's capable of.  We want him to be the best he can be, but we don't know what that is yet.

He's doing well in his new school, but every day brings a new challenge:
Will he meet a friend?  Will he have a tantrum and alienate people?  Will he learn what he needs to learn?  Will he be able to stay in school?  Is this the best school for him?

Maybe yes, maybe no. 

If you're not used to life outside the norm, what is that like?

It's like your kid trying a bike without training wheels.  It's like your teenager going camping with friends and your car and no adults for a week.  It's like your daughter going to the prom.  It's like your kid, coming home from college, and announcing that they're engaged to someone you don't know.  Every day.  

Every day feels like we're at a turning point, and we've got no stars to guide by.  We're outside the bell curve.  It's uncharted waters.

When you're outside the norm, the best you have to go by is what people who can see the big picture tell you.  That's the American Academy of Pediatrics and a whole host of other folks who have studied us outliers for years.  We're hoping our legislators will help us follow their path, starting tonight.

That was a year ago.  That bill passed.  Some other things have changed.  Medicaid now covers autism.  The Utah plan for that was announced this past Tuesday.  We live in a weird time for autism treatment.  Medicaid is by design the worst coverage you can get, but I wish we had it.  It's supposed to be the last resort, but they're going to be covering they should.  SB 57 will go into effect in January of 2016, but it's only going to add a small slice to the pie of coverage.  

In the meeting that announced the Medicaid plan, I heard parents say, "I saw the benefits for my kid from the Medicaid waiver, but now my kid won't have access to therapy."  That's probably true - on the other hand, the Department of Health expects that 4200 individuals will get treatment through the new plan, as opposed to less than 400 before.  That's a pretty big step forward.  It's time for organizations with self-funded plans to step forward and do the right thing - cover autism.  Do as well as Medicaid.  Insurance should cover this stuff - that's what it's for.