Happy Hand

Ugh, it's been more than a month since I last posted...sorry about that.  Let's play catch-up.  Since then, we've had some milestones and good times.

Ben started kindergarten.  It's a new routine with new kids and new teachers.  Everybody seems great, though.

We went out to the salt flats during speed week and saw some really fast cars.

Ben wore a tie for the first time.  We drove to a family wedding in Montana.  We dealt with all the issues - long times in the car, sleeping in a strange place, being in crowds, sitting down to nice dinners, and staying quiet during a ceremony.  I won't bore you with details.

On the drive back, we went through Yellowstone, and managed to time it just right so we saw Old Faithful blow.  Awesome.

 We got a cat.  Bubba was really wanting a pet that would be in the house all the time, and I vetoed some of the other options (rat, hedgehog, guinea pig).  I'm kind of firmly anti-rodent.  Her name is Emma, and she killed her first mouse today.  The little devil had chewed through her food bag, so I guess he stepped over the line.

Ben's talking more, and using more complicated sentences.  I'm sure part of that is just normal development, but we also have a really awesome speech therapist (L) who he sees once a week.  It's a big part of the week that he looks forward to - she's really fun.

L also solved a mystery for us.  For a good while now, Ben has been clenching his hand in an odd way, usually in quiet moments.  He would look at it and smile, sometimes saying "happy".  I was perplexed by this behavior, but L figured it out.  Ben's fingertips were making a smile shape.

Have a nice day!

Achievement unlocked: Playdate!

We went to Tennessee last week to visit my folks and my sister.  I wrote a post about the plane trip, but haven't published it yet, 'cause my editor and I agree it's just not that interesting.

So here's something that is interesting:  Ben had his first ever honest-to-God successful play date on this trip.

A brief history of us and play dates:

Bubba had many play dates.  They were awesome and good for him and me.  We had friends who had kids at roughly the same time, so things were just in synch.

For Ben, we didn't know anyone who had kids the same age.  We met a few kids through preschool, but Ben didn't really like playing with them.  At playgrounds, he would hang out for a few minutes and then head off in a quasi-random direction.

arr, it be humid here.

In his first preschool, when Ben was among the neurotypicals, one mother pulled me aside and said, "my oldest has autism, and we'd be happy to have you over for a play date."  She was telling me that her 3 year old knew the score and was willing to let Ben maul his Thomas the tank engine set.  We accepted and the play date went as well as one could expect.  3 year old Ben didn't really interact with her kid much at all.  Her older autistic kid hid in the basement.  As play dates go, it was a bust.  I do, however, have great respect for that mom and her 3 YO -- they were very nice to try it.

Since then, Ben has had some good times with other kids, mostly while they were playing with his older brother.  That's the closest thing we've had to a playdate -- Ben chasing other kids while they do something fun.

Fast forward to last week...we are staying with my sister in the most wonderful small town in Tennessee.  We get invited for cocktails at J&J's house.  Their 3 1/2 year old took a shine to Ben and led him on a whirlwind tour of all the joys of his house.  Within about 20 minutes, they were pantsless and jumping on a trampoline.  There was much giggling.

I was already verklempt, but then L (their kid) said, "Ben!  come for a ride!" and hopped into his Jeep.  Ben, rather innocently, came and sat by him.  L put the pedal to the metal and the Jeep took off.  I think that rocked Ben's world in a serious way.  L really blew his mind.  I'm pretty sure Ben's world changed that day, and I'm quite happy about it.

This was a seriously good time.  It was a reminder not to stop trying.  Maybe Ben just needs to spend time with younger kids.  Developmentally, he's a bit behind -- he sure as heck seemed to enjoy every ding-dang thing that 3.5 year old was dishing out.

I have a new mission -- find kids that Ben can play with, and have play dates galore.  It's time.  If he's ready...it's time to party.

On the road again...

So far, we've flown to Tennessee and had a lovely, but exhausting time with my folks and sister.  Now it's time to drive back to Salt Lake in the vehicle that my folks have carefully prepped for us.  Mom has set us up with lots of snacks and we're ready to hit the road.  We load up, give hugs and kisses goodbye, and drive off, giving the same horn salute that Pa used to give Granpa after a visit.

I'm pretty optimistic about this trip.  Unlike confinement on an airplane, Ben doesn't seem to mind being in the car.  There's motion, road noise, lots of stuff to see, and snacks.  We have to stop every couple of hours and get out to run around, but that's a good idea for me, too.  I think Bubba was actually harder to entertain on car trips back then.  Now, he reads or plays his DS or listens to the ipod.  When everybody's calm and entertained, I get to think about whatever I like.  For this trip, I've got The Hunger Games as an audiobook.  Bubba and I wound up really liking it.

We're heading through St. Louis, over to Kansas City where we'll stop and visit some friends who recently moved there from Salt Lake.  I'm planning to stay in a hotel, since I think that's my best shot at getting Ben to sleep and not ruining our friends' rest.  We'll try to get all the way to Denver the next day and visit with some more friends.  Another day's drive should get us to Salt Lake, but we'll just have to see how it goes.

From my folks' place to St. Louis is easy for me.  I worked in St. Louis for 5 years after college, first for MacDonnell-Douglas and then for a software developer that was bought out by an L.A. firm.  As we approach the city, I shut off The Hunger Games and bombard Bubba with stories about my time there.  Going through East St. Louis, I tell him about how the city went broke and they had to sell the city hall.  He's impressed by the Arch, and listens patiently to me talking about riverboats and how this was a jumping off point for people heading west.  We stop for lunch on the other side of the Missouri River and let Ben roam around a little while I call our friends.

We love these people.  They are both scientists.  He's an outgoing, charming guy from Venezuela - I'll call him "A".  She's German and is quiet and thoughtful, with an engaging grin -- I'll call her "T".  Their two kids are really wonderful too.  We got to know them pretty well on that trip to Costa Rica I mentioned before.  They are the only folks who call Ben "Benny,"  and they are very good at making him smile (and me too).  They've invited us to stay with them, but I know that their kids have just started school and that odds are good we would be pretty disruptive.  "A" points me to a hotel that's not far from their house.

Refreshed, we zip across Missouri, and reach Kansas city in late afternoon.  The iphone leads us to our hotel.  It's pretty posh, but I'm ok with that for now.  Checking in takes a little longer than I'd like -- I can tell Ben needs to expend some energy before he melts down.  I bull our bags up to the room and we all three kind of unravel.  The kids are hungry, so we get some room service.  An hour later, we are somewhat recharged and go off to see our friends.

I want to run through the plants!

"A" greets us, and makes me a gin and tonic (yay).  He's as entertaining as ever -- I think I'd be a good straight man for him, should he ever take up comedy.   Ben roams their yard, exploring nooks and crannies.  I follow him, and Bubba loiters.  "T" shows up with their kids soon, and Bubba happily engages with them (yay).

We stay for an hour or so, and it's very pleasant.  Ben is on pretty good behavior, but it is still hard to carry on a conversation.  I'm wishing my wife were here.  As we head out to the car, "T" gives us some fresh fruit for our trip (it came in handy, too).  We manage to leave Ben's sandals behind, but otherwise have no problems.  Or so I think...

The rest of the night is reasonably uneventful.  We skip the bath (mistake), and get Ben to sleep.  Bubba watches some cartoons and I played World of Warcraft before we turn in.  Ben wakes us up at 4:00 a.m. -- no surprise there.  This time, though, we just hop in the car and get going.

I gas up and buy an energy drink and some sausage biscuits (banana for Ben), and we start across Kansas.  We're about halfway across when Ben starts getting cranky.  Hmmm, maybe he needs to poop.  We stop at a rest stop and get out.  I move bags out of the back and set up a diaper changing station.  I grab Ben and start to change him.  Uh oh.  HIVES!

Right now, they're just on his belly and legs, but they're pretty impressive.  I use baby wipes on him, and change his clothes.  He's in a better mood now, and wants to run around the rest stop.  We do that for a while, but eventually have to get back in the car.  As we drive, I think about all the possible causes.  I'm guessing it was the plants at our friends' house.  Ben probably rubbed up against everything in their yard.  It could also be my mom's fabric softener.  We don't use that at home and I've heard of kids having reactions to it.

I call our pediatrician's office and talk to the nurse practitioner.  She's always reassuring.  She suggests Benadryl and calamine lotion.   We stop at a truck stop in western Kansas, and I check on Ben.  The hives have spread to his face, neck, and arms and he's not happy about it.  We walk around the truck stop, looking at trucks.  I call our friends in Denver to warn them that things are not going as planned.  "M" is very good to talk to -- he suggests I find a Walmart and tells me of a motel for when we get to town.

I get Ben and Bubba back in the car and pull over to the pumps.  I go in to see what I can find while the car is filling up.  They don't have anything that would help.  The lady behind the counter says, "How's it going?"  I'm looking a little stressed, and say, "Well, I'm on a long car trip with my autistic kid and he seems to have some pretty bad hives.  Where's the nearest pharmacy?"  "Oh dear.  There's a Walmart in Colby, right up the road."  Phew!  I know people yell about the proliferation of Walmart, but I am very glad for it today.  We stock up on juice boxes, calamine, benadryl, and some other things and get back on the road.

We make it into Denver and find our motel.  It's just what the doctor ordered.  I give Ben a quick bath (probably too late now, but who knows) and put more calamine on him.  Bubba settles in for some cartoons while I go walkabout with Ben and call our friends.  We make plans and I go back to retrieve Bubba.  "M" and "C" meet us at one of their favorite Mexican restaurants.  The waitress knows them and obviously likes them, because she gives us a great table and has some margaritas to us in no time.

It's great to see these guys.  I met them through mutual friends playing World of Warcraft, and for a long time pictured them as Night Elves.  When we finally met them in person, it was odd to hear their voices coming from normal humans.

Uh oh, Ben's not happy.  The restaurant is too much for him.  Ben and I go walkabout to calm down, and stay out until "M" texts me that the food is there.  We get back, but Ben won't really eat anything.  Bubba has been enjoying "M" and "C" and his virgin 'rita.  The food is really good.  We don't stay too long, but it's really good to see those guys.  Back to the motel.

One more night.  No surprises.  4:00 a.m.  Up and at'em.  Bubba is surprisingly uncranky about this.  We listen to more Hunger Games, avoid a drunk driver, see some deer, go slow in construction zones, and make it to Wyoming as the sun is coming up.  I want to call Lovely Wife, but I'm pretty sure she's not awake yet.

Wyoming is nice.  I have pleasant memories about my first trip through here as an adult.  I'm excited to get home and decompress.  I talk to Bubba about the terrain, and the pony express.  We stop to gas up and put on more lotion.  We chat with Momma and pick up some Fat Tire before we cross the border.

Home!  Home!  Mommy's here!  Yay!  Zzzzzzzzz.

Thanks, Granma Granpa!

Ben looked pretty appalling by the time we got home...hives, pinky nail all swollen up.  A few days later, I got his hair cut and the hives were gone.  We were all set for the first day of school.  Oops!  He whacked his head on a table at Five Guys and had to get stitches at the ER.  sigh.

Book o the day:

We go to the emergency room way too much.  I found this book reassuring.

Daniel Boone was a man...

almost home

To pick up where I left off...my sister and I had a nice drive to our home town.  We get along well, now that we're adults.  She's pretty awesome, actually, and always has been.  I'm just ready to appreciate it now.

My folks live outside of a small town by about 4 miles.  We wind through the familiar roads and turn into the woods.  It's about a quarter mile of gravel to my folks' place.  We arrive near midnight local time.

My folks greet us with open arms.  They are so happy to see us.  Ben is trying to crawl into my clothes.  He's tired and overwrought.  On the bright side, he doesn't seem to notice that his pinky is ballooning up from the accident on the plane.  Sensory processing disorder does have some benefits.

We begin what will be the standard for the next few nights.  I get Ben ready for bed, read to him, sing, bounce him, and eventually just hold him until he falls asleep on top of me.  It takes about an hour, even with the melatonin. I'm tired, but can't fall asleep myself, so I slip on earbuds and listen to a podcast until I do. He wakes up a couple of times during the night, but I get him back to sleep.

We get up at something like 4:00 and have some breakfast, then head to the basement to explore.  There's a treadmill and wagon and lots of old toys.  My mom never throws anything away and Bubba really likes playing with my old toy guns -- they don't make'em like that anymore.

crawdad huntin'

We spend our days going walkabout on the farm and playing in the creek.  This is the place we moved to when I was five.  My first memory of it was my dad talking to the man he would buy it from while they stood looking at the creek.  I laid down on my belly and started drinking straight from the stream.  I got in a few good slurps before Dad grabbed me and said, "What are you doing?!"  I thought it was pretty obvious what I was doing, but I said, "I'm being Daniel Boone."  Dad explained to me that cows pooped in the creek right upstream and drinking it was not such a good idea.

These days I think more about fertilizer, pesticides, herbicides, and all that stuff.  We know autism has both genetic and environmental factors.  What if it's the garbage in our food?  I buy some organic food, but not all.  What if I had gone all the way organic?  Maybe our lives would be different now.

It doesn't help my mood as I write this that I just watched The Corporation on Netflix.  The part about bovine growth hormone in milk and Fox's coverage was infuriating.  I grew up with heroic reporters breaking Watergate and bringing down a corrupt president.  Could that happen today?

Anyway, both boys have a very good time, and Auntie plays with us, helping Bubba catch crawdads.  He's having a blast.  A neighbor comes by and gives him a ride on an ATV and lets him hold a tricked out .22 rifle.  He comes back with a grin so wide it looks like the top of his head will fall off.

you could hear this for miles.

This was a great place to grow up.  I spent every summer day roaming up and down the creek, exploring and pretending.  I had a BB gun and knew how to use it.  Mom would ring a big dinner bell when she wanted me to come home.  I'd love for my older son to experience that kind of freedom.  I admire the free-range kids mom, but am not quite there yet.  I've lived in urban environments for almost 30 years, but don't really get how kids have fun here in a good way.  Bubba has playdates, but I try to steer them towards wii, legos, and playing in the back yard.  Of course, I'm usually watching Ben during these events.

It's really hard to imagine Ben having that kind of freedom.  ASD kids can be wanderers.  We do our "walkabout" the neighborhood most every day, and I can tell that he would be just as happy whether I was there or not.  He's recently learned to open the front door.  It's obvious that we have to get a double-keyed lock installed on the front door, or there's going to be mayhem.

It was a short visit, but good to see the folks.  Ben starts at his new school next week and we have a little over 1600 miles to drive.  Next time, I'll tell y'all about our exciting road trip back, after 3 nights of little sleep.

Haiku for you:

 "Go get newspaper."
"It's really cold out there, son."
"I want see moon now."

eastbound and down

Our "support network" is a little different, I think, than many families.  I'm a transplant to Utah.  I came out here back in 1991, having accepted admission to grad school without ever having visited the state.  That's a story in itself, but it didn't take long for me to fall in love with this place.  My kinfolk are mostly back in Tennessee.  My niece moved here last year and that has been awesome.

My wife grew up here.  We lived in North Carolina for a while, but both were thrilled to move back here when she got out of law school.  Her family all moved away about the time we returned (just a coincidence).  Many of her friends left Utah to explore the world, but a few have come back and we're very thankful for them.

Even though we don't get to see my folks that often, they are tremendously important to us.  They help every way they can.  For instance, a year or so ago, my dad said they weren't that happy with their current vehicle and if I was interested, I could have it.  I said I'd think about it (the last vehicle they gave us was still going strong), and put it out of my head for a while.  After a while, little things started going wrong with our car that were minor, but very expensive to fix -- like when the power seat was stuck in a forward position (I'm 6'3" and that sucked) -- $800 fix.

Back in August, I called them up and said, "Hey, is that offer to pass on your car to us still good?"   There was a bit of a pause, but Ma and Pa didn't hesitate much.  I suspect some of it was them thinking "we'll need to put new tires on it first", 'cause they're those kind of folks.  With that, a plan was born for me to fly out with the boys just before school started and drive back with the Highlander.

Traveling with Ben is always an adventure.  This time, I decided on the direct flight to Nashville.  The upside was that we had a short overall travel time and fewer takeoffs and landings.  Ben isn't scared one bit of flying.  He kind of likes it, I think.  What he HATES is what happens when the seatbelt light comes on.  He's fine with his car seat in the car, but put him on a plane and tell him he has to sit still with a seatbelt on, and he freaks.   Not all the time, but enough that we went for the direct flight.

The downside of the direct flight was that there was only one, leaving around 5:00.  Schedules can be pretty important to ASD kids.  If Ben needs to be flexible, morning is the best time.  He gets more fragile as the day goes on.  By 3:00, I'm monitoring him to see if he needs to nap (which means bouncing him across my knees).  There's snacking to be done, and often a walkabout is called for.  A 5:00 flight means getting to the airport by 4:00 (thank Zeus for the family line at security).  Salt Lake is small enough that from our house east of downtown, we can get to the airport (west of downtown) within 20 minutes.  Given that we needed to put a car seat in the cab, I called Yellow Cab a day in advance to pick us up at 3:30.

The big day came.  We'd talked about our plans in advance.  Our bags were packed, everything was copacetic.  We watched out the window for the cab.  And watched.  Until 3:45.  The cab company called...they were on their way.  yay.  They did show up, we hurried.  No freakouts.  Ben sometimes retreats when things are weird.  That's useful at the time,  but it's just a build-up for later.   We rush through the airport, security is easy.  We get to the gate...hey, we don't have seat assignments, can you help us?  Delta is pretty awesome, and we get situated.  Ah, Ben is poopy.  Fix it.  Time to board...NOW!

a couple of days later

Yay!  We're on the plane.  We're right behind first class.  We're in an emergency row, but the flight crew is being cool about it.  Ben starts yarging on the divider between us and first class (this was before the Occupy movement), but is generally happy.  There's only a small delay, and I buckle him in for take-off, distracting him with snacks.  The seat belt is horrible for him.  He sooo wants to move.  Eventually, we get to a place where he can get his tray table out.  It's one of those "fold up in the armrest" ones.  You know...dangerous and loud.  He spends the next couple of hours ricocheting around his 5 cubic feet and manipulating the tray table.  All in all, it's not the worst flight I've been on with him, but I'm pretty sure the first class passengers right in front of us were having a hard time enjoying their wine and warm facecloths.

It's time to land...the seat belt light comes on.  Ok, get ready for some hollering.  It's bad, he doesn't like it.  We do it anyway.  No, don't play with your tray table.  WHAM.  uh oh.  Ben has caught his pinky in the tray table.  This is not good.  The last half hour of our flight is accompanied by wails of pain.

We stagger off the plane and collect our bags.  Fortunately, Bubba is an awesome kid who is easily bribed.  He (who would love to ride the baggage carousel like his dear old Pa once did) keeps Ben out of trouble while I collect bags.  We head out and meet up with my sister.  After car seat wrestling match, we're on the road.

crikeys, i'm tired.  i'm gonna be a newbie blogger and hit publish.  more to come.

Tip o the day:

If you're a stay-at-home parent, podcasts are an awesome way to hear grown-up conversation and still get things like housework done.  The Morning Stream has helped me get through many days.   I just started listening to this one about special needs.

Bonus tip o the day:

We've had good and bad plane trips.  The best one I remember was one where I spent the whole trip engaged with Ben.  I stayed in contact with him the whole time, and had a vibrating toy that I kept zapping him with.  I think it was a Bumble Ball .  It was exhausting, but there were no meltdowns...he was in such a good mood that he even tolerated the seat belt.

Sleep, baby, sleep

I've always been an early riser.  Back when I was working in the videogame industry, I would go to sleep thinking about a problem, and dream up answers.  I'd wake up at 4:00 a.m., convinced that I had solutions to try out.  I'd shower quickly, throw on some clothes, and drive off to the office, trying all the while to reconstruct what I'd come up with.  I'd hurry to my computer and test my theory.  It was right maybe a third of the time.  On the bright side, I was up and thinking and had the office to myself (although Jason, Jeff, and Paul were often earlybirds, too). 

The usefulness of this attribute ended about 10 years ago, when I became a stay-at-home dad.  As a parent, the survival skill is to sleep when your kid sleeps.  Sleep is important.  It's important to you and your kids.  You need it to make your thinker work well.  They need it to help their brains develop and assimilate all the stuff they're learning.  A lot of ASD kids have sleep issues.  Apparently, they don't produce melatonin the way the rest of us do, which means that their systems don't recognize that it's time to snooze.

With my typical kid, I would wake up early (but after 5:00 generally), thinking about things that needed to be done. I'd go make coffee, shower, and play World of Warcraft until my son woke up at oh, say, 7:00.  It was all me-time up 'til then.  Ah, the good old days.

Bed time was kind of fun, too.  We'd sing a song, read a book , make up a story about adventures with Princess Aurora and her dragon.  There was one summer when we put his mattress inside an old camping tent and he slept in there.  It was pretty smooth sailing.

When Ben came along, things changed. He didn't want to sleep.  He would wake up in the middle of the night.  He wanted to get up and do stuff.   As parents, I think we were doing all the right things -- keeping a routine, a night light, comfy pajamas, background noise (cool-mist humidifier), etc.  It just didn't work all the time. 

Lovely Wife and I split up the responsibilities.  If there was Ben action any time after, say, 4:00 a.m., I would not be able to sleep anyway, with my morning-brain, so I might as well get up.  If it was earlier than that, she would generally take over and try to bounce him back to sleep.  This wasn't every night, but often enough to be exhausting. 

Travel is the worst though.  Sleep disruptions always occur when we travel, and there are other people to worry about, and no basement to retreat to.