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.

The Candle Trick

What's it like to be the sibling of an ASD kid?  I don't know, but I do remember that before Happy Trouble came along, I used to play lots of games with my eldest.  Video games, boardgames, card games -- we had a blast.  Our family did a lot more camping and outdoorsy stuff too.  We had an awesome NINE day raft trip with some good friends.

That's not happening these days.  Ben almost always needs someone's attention.  He's sleeping across my knees right now (the only way he'll nap).  Lovely Wife works many hours a week (she's working right now), and there are always chores to be done (I'm still looking at some dirty pots from Thanksgiving).  Thankfully, Eldest is having a playdate at a friend's house, so something fun is happening for him.

Anyway, yesterday, I decided that we'd try the new Zelda game for the wii -- The Legend of Zelda: Skyward Sword .  We used to love the old one back in N64 days, and I thought we could all settle down after leftovers and give it a try.  It might even entertain Ben.

I loaded the boys up in the car and we whipped over to the Blockbuster where we are signed up for the new monthly program.  Oh no!  They were all out!  As Ben dragged me around the store, grabbing for all the candy displays, the clerk let me know that the Millcreek Blockbuster had it in stock.  "Do I still get it for free as part of the program?"  "No."  *sigh*

We gloomily got back in the car (after a brief chase around the parking lot for Ben).  I looked at Eldest and though about how much he'd been looking forward to some family gaming.  It wasn't a hard decision.  We headed to the Millcreek Blockbuster and picked it up (with more candy grabbing/Ben wrangling).  Yay!

We zipped home and made some lunch.  Eldest put the game in to try it out.  Oh no!  It requires the Wii MotionPlus !  We don't have that!  We can't do it!

By the time Ben got his walkabout, nap across my knees, snack, and some backyard playing, it was 4:00.  We headed to BestBuy...on Black Friday.  I'm sure it was worse in the morning, but it was still pretty dadgum chaotic...a great place for an autistic kid.  We did it though...we found the thing, waded through the herd, and zerbitted our way through the checkout line.  Yay!  Nothing can stop us now!

We got home, and I started pulling out the leftovers.  Our microwave died a while back (killed by Poppodoms ), so you have to get started early, even with leftovers.  Eldest came upstairs, completely dejected.  It wasn't working...at some point in the process, the cursor would not show up.  "Ok...we'll figure this out."

And we did figure it  out (thank you Google).  Our "sensor bar" had gone bad.  It turns out that the sensor bar on the wii is really just 2 clusters of infrared lights.  You can see them if you look at them through the iphone camera.  Plain as day, only one of ours showed up.  What to do?  Put a lit candle in front of each cluster.  It worked!  Yay!

Ok, it wasn't my dream game evening -- no way would Ben sit still for lit candles that easily reached.  Still, he eventually went to bed and the rest of us got to hang out with Zelda (I fell asleep on the floor).

Tip o the day:

Cut the cord.  We cut cable a while back and just use it for internet access.  The way things are, we can't let a television show tell us when we can watch it anyway.  We have hulu and netflix and a computer and we can decide when to start watching something.  We can pause it when we need to.  There's a whole lotta content out there that's great, and we're saving about a hundred bucks a month.

solo

My wife and older son are off at a cabin right now, hanging out with another mom and her two kids.  Ben and I have been on our own since about noon yesterday.  We spend a lot of time alone together.  My wife's job requires her to go on occasional trips and frequently work on weekends.  Even so, I can barely imagine what it's like to be a single parent of an autistic kid or kids (like this lady).

When we were first researching what the autism diagnosis meant, I came across a statistic saying that 80% of couples with an autistic kid get divorced.  That sent a chill down my spine.  Put that together with my wife being an attorney, a female attorney, and me having been married before, and our odds of remaining married are pretty dang low.

It doesn't feel that way though.  I fell in love with my wife about 17 years ago.  I keep finding more reasons to love and respect her.   Raising an autistic kid does add stress, but it's also shown me facets of my wife that I might never have seen otherwise, and I love her all the more.

Oh, apparently that 80% number is bunk.

Anyway, my hat's off to those of you going it alone.  Hang in there, kitty.

Tip o the day:

Have a date night.  Heck, go stay in a hotel.  We had trouble finding sitters who could handle Ben until I came across Sitter City.  It's a matchmaking service that hooks parents up with sitters (or nannies).  You can describe what your needs are (there's even a check box for special needs).  We had something like 20 applications in the first day.  There was a lot of chaff in there, but we've found 3 wonderful sitters with special needs training who are awesome.

Curious Ben Goes to the Capitol

My wife volunteered to help the Utah Autism Coalition and Autism Votes.  So yesterday, we headed downtown, picked her up from work, and zipped up to the state capitol building to meet with Ben McAdams.  He's the state senator from our district and he agreed to meet with us to learn about what it's like to have a family member on the spectrum.  One other person showed up, a grandmother whose grandchildren go to Spectrum Academy, a charter school for kids with autism.

 The senator was occupied with other business when we arrived, so we had plenty of time to explore and stomp around the serious men in suits on cell phones.  Ben seemed to like the high ceilings, but was a little overwhelmed by the echoes of the building.  I thought for sure he was going to jump into the fountain on the way in, but he held off on that.  Eventually, we got into a meeting room and shut the doors so Happy Trouble was contained.  He ricocheted around for a bit, then crawled across my wife's lap where he was bounced until he fell asleep.  This is a really comforting pose for him and builds strong calf muscles for us.  It's the only way he naps unless he passes out in the car.

Senator McAdams was very gracious and listened to our stories.  We tried to get across the pain and heartbreak of the process -- learning that there is something "wrong" with your kid, getting The Diagnosis, researching, reading quack theories, going to doctors, therapists, sleep deprivation, airplane travel, not knowing what your kid is capable of or will be.  I wish I'd been better prepared to tell it coherently, but I think he's a pretty astute person and got the gist.

Tip o the day:

Go to the spice rack and pull out some good scents.  We like cloves, cumin, cinnamon, curry powder, and sage.  Let your kiddie smell them one at a time, and repeat the names.  BTW, if they put a clove in their mouth, they won't do it twice.

Wash hair!

Ben loooves to "go walkabout".  This means we amble through our neighborhood, sometimes pushing a broken pink toy stroller (yea, I'm confident in my masculinity) and walking on top of walls.  I think he gets a lot out of this -- exercise, practicing his balance, pushing something.   When we do this in the afternoon, he usually sleeps well that night.

Anyway, a couple of weeks ago, we went walkabout and he got ahead of himself and fell, scraping his hands.  He was upset and it was time to head back, so I put him on my shoulders and we headed for home.  A little galloping got him back into a good mood.  Just as we got to our driveway, this happened:

Ben says loudly:  "Wash hair!"  

Me, perplexed:  "Huh?"

Ben spits enthusiastically on my head and proceeds to rub it into my hair with great vigor.

Since then, he's attempted this with others, but since he's usually not riding them and announces his attempt, they've managed to avoid it.  I wear a hat.

Yes! Immunize your child!

Don't listen to her!

I love the internet, but sometimes it's too easy to find out-of-date or just plain bad information.  There was a scare some years ago that it was immunizations that cause autism.  It's not true, but you'll still find lots of junk out there about that idea.  There's a lot in print, too.

About two years ago,  my wife was out of town on business for the better part of a week.  Ben got a flu shot.  It was a little hard to get -- this was back when h1n1 was in the news.  I had just read Jenny McCarthy's book (I refuse to link it), even though I was pretty sure what she said about the immunization/autism link was crap.

That night, a half hour after I put Ben to bed, I heard him crying and yelling.  I went in and saw that he had vomited.  He had a high fever, too.  I washed him off, gave him Motrin, dressed him in clean pajamas and tidied the mess. While I was sitting there with him in my lap, waiting for the Motrin to kick in, a little part of me panicked.  I was already tired from a long week (this was on a Friday), and my spouse was all the way across the country.   What if Jenny McCarthy had something?  What if my kid was extra-susceptible to something in vaccines?  Regardless, he was having some kind of reaction -- I should tell my doctor, right?

I called our pediatrician's office (which was closed, this being a Friday night) and got the on-call guy to call me back. He basically said to avoid dehydration, stick to a BRAT diet, and keep the fever down.  I think he was annoyed to be talking to me, but it helped me banish the McCarthy fears.  In the end, Ben was sick for about a week.

A few months later, I came across this book: Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure .  I'll warn you -- this book may make you really mad.  If you could find a culprit -- someone to blame -- what would you want to do?  There are people in this book who took those feelings and pointed them at vaccines.  The reason they did it was to make money by selling alternate "safe" vaccines.  In doing so, they scared people away from getting their kids vaccinated.

Tip o the day:

Find your public library online and reserve books there.  You can see when they're ready for pickup and just run in and grab them.  I don't know about your kid, but mine doesn't like to let me browse leisurely at the library...or anywhere, really.