Happy gas

So, the day after Thanksgiving, I lost a crown.  Of course, the dentist office was closed and I had to wait until the following Tuesday to get a temporary put in.

I can put up with a lot of pain in some ways, but not so much when it comes to the dentist.  I always ask for nitrous oxide.  It has an anti-anxiety effect and it lets me feel dissociated with what's happening in my mouth.

As I laid there in the chair, with my jaw completely numb, unable to speak as the dentist chatted with his assistant and ground away at the stump of my tooth, it occurred to me that this might be the way Ben feels some times.  The dentist would occasionally use some jargon with his co-worker that made absolutely no sense to me.  I was pretty uncomfortable, trying to keep from gagging, and I'm pretty sure my tongue was wriggling around in my mouth like half an earthworm.  Also, I had a strong urge to bite the bejesus out of somebody.

Yesterday, I got the finished crown put in (and got some small cavities filled).  Again with the nitrous...I had lots of deep thoughts about Ben and his "trajectory". 

Got him to wear a hat!

Recently, Ben had his own dental work done.  Up until last year, it was extremely difficult to brush his teeth.  We'd do it, but it was like washing a cat, or maybe trying to brush a cat's teeth while it was on fire.   This would also be happening at the end of the day where we're all pretty exhausted (Ben has sleep issues).  Between treats used as reinforcers at school and the bribes he get at various points in the day, it was leading to a bad situation in his mouth.

I found a dentist who works with special needs kids and although he could only get a quick look in Ben's mouth, he could tell there was work to be done.  There was really no way to do it without sedation.  Fortunately, on the first Thursday of every month, he works with an anesthesiologist at the hospital to do special needs dental work.  After one rescheduling (croup!), Ben got his teeth fixed...and sealed.  There were no problems other than a middle-of-the-night wakening (tube down nose -> irritated esophagus), but it was kind of a multi-day event.

I read somewhere that kids with sensory integration issues experience things differently than we do, such as walking barefoot on carpet could feel as bad as walking on broken glass or the opposite, that everything is kind of muted.  I understand why he has to be knocked out for dental work, and I can totally empathize with the desire to bite.  Hmm, maybe this was a deeper thought when I was on happy gas.

Special note:  Yes, Mom, I will take better care of my teeth, and my kids' teeth.  There is no need to send dental hygiene supplies.

Adventure Time

this is more fun than it looks

I was reminiscing the other day about our life pre-autism.  It was 6 years ago in August that I took Ben's brother and our dog on a nine day rafting trip with another family.  It was one of the best trips of my life.  We had a blast.  I remember feeling that he was finally mature enough to have real adventures, and that we had a future of camping and hiking and climbing ahead of us with lots of father/son bonding in the outdoors.  In my vision of the future, I would teach him to rock climb and other awesome things.

Bubba chillin' at the campsite

There was at least one very tense time on that trip.  Bubba was on the other family's raft with his friend (L) and her father (G).  I was on my raft with her mother (M).  They stopped for a potty break and were 10 minutes or so behind us when a heavy squall hit.  Wind was roaring down the canyon and rain blasting sideways.  Thunder and lightning were crashing all around.  It was Old Testament for a while.  M and I grew more nervous as the other raft failed to show up.

Things let up a bit and along they came, everyone warmly dressed and huddled together with the dogs.  G maneuvered his raft with all the serenity of a Massachusetts lobsterman who's seen much worse (which he is).  Then we made hot cocoa.

Ben is now a year older than his brother was then.  I can't fathom the idea of a nine day raft trip with him.  He has a hard time sleeping in ideal conditions.  Camping, or even traveling, is an iffy proposition.  We still do it, but constant vigilance is required because he'll roam in a heartbeat. 

happy trouble

The good news is that he's a pretty happy kid, and he loves to be outside.  Yesterday, he was asking me to set up the slip and slide (it's way too cold already).  A few minutes ago, a big front blew through and scattered leaves across our yard.  He came in gleefully yelling "LEAVES!" to share it with me (sorry, no pics).

I spent some time observing Ben's classroom this morning.  I can't go into it here...there are privacy issues, but I will say that we are very lucky to have a great school with great teachers and he seems to be doing really well there.

Maybe some day we'll go camping and be able to relax.  I'm looking forward to it.  Ben's not quite big enough yet, but we're going to check out this program ASAP.

a not-very-relaxed dog

As a side note, the parents at Ben's school have started talking about fund-raising again.  The Amazon link at the bottom of this blog is still active with an associate account linked to the school.  If you use it to get to Amazon, a portion (5%?) of any purchases during that browser session will go directly to the school as a donation (none for me).  It doesn't increase your price at all, so why not?




Also, if you live in Utah, Smith's grocery donates to schools based on how much people buy with their "Fresh Values" program.   If you don't have kids of your own and would like to help out, you can ask the cashier to link your card to Carmen B. Pingree School.  Easy!  Doesn't cost you a thing!  Hey, while you're at it, ask your friends, co-workers, and extended family to do it too.  It's not just a school, they do research and train people to do therapy.  We need more o' that.

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!

slippin' and a slidin'

SUMMER!

Lovely Wife left on Thursday for the annual "Women's River Trip".  "Baching it" can be fun -- just me and the boys eating unhealthy food and having too much videogames and TV.  Personally, I managed to watch an entire season of Breaking Bad.





Click "read more" for more gory details!

Knock-knock!

Nyuk-nyuk-nyuk

Hoorah!  Ben just told his first joke.  It's been brewing for about 3 weeks.  On our recent trip to Tennessee, he started trying to tell knock-knock jokes, but they weren't funny.  They were generally along these lines:

Ben:  knock-knock

Me:  Who's there?

Ben:  Ben.

Me: Ben who?

Ben (yells):  BEN!

We still laughed, of course.

A few minutes ago, we got this:

Ben:  knock-knock

Bubba:  Who's there?

Ben:  Ben.

Bubba:  Ben who?

Ben:  Ben-nana!

Good stuff.

Ready.

I'm not proud of this story, but I want to tell it anyway.

Sunday morning, Ben and I went to the park bright and early. I walked and he rode his scooter.  We were at the park for about 20 minutes and swinging away merrily when we were approached by a young man.

He looked to be about 18, but I'm not good at judging young peoples' ages any more.  He had on jeans, a dark t-shirt, and a black cowboy hat.  His mustache was thin, but not to be laughed at.

I think he stood there for a minute before I noticed him.  When I did, I said, "Hi...how's it going?"  He looked confused for a bit, and said, "Do you have a phone?"  I was holding it at the time, so I said, "Obviously I do...how can I help you?"  Some sort of dam broke in him and the words spilled out:

"My dad threw me out last night.  I've been walking around since then.  They're all drunk.  I don't know where to go.  I get SSI checks.  I'm tired."

I asked him if he'd like me to look up the shelter down by the bus station and he said that would be nice.  I looked it up and told him the address.  It would be a walk of about 2 miles.  He straightened up, said thanks, and strode off in the right direction.

When he got to the edge of the park, he paused and looked to be talking to himself.  He crossed the street and headed towards some apartments.  I lost sight of him.  10 minutes later, he re-emerged and headed in a different direction, moving slowly, like an old man.

I headed home with Ben, knowing that Lovely Wife was preparing a delicious omelet.  Later that day, I saw 3 police cars parked at the apartment building the young man visited.  I checked the local news a few times, but didn't see anything of interest.

What happened here?  I am not sure, but I think I met one of ours, an autistic man, in need of real help and did not provide it.  I'm really sorry.  In my defense, he was very articulate and made excellent eye contact.  When I told him about the shelter, he acted like he knew where the bus station was and seemed quite confident.

It wasn't until he was walking away that my brain processed the "I get SSI checks" comment.  Whether he has autism or not, I think that means he has a disability and is 18  or older.

That's the story. 

Sorry, kid.  I wasn't ready, but now I am.  I'll be watching for you.


(better story)

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.

Shut my mouth and call me Elvis

Every once in a while, Ben shocks the bejeezus out of me.  He did it again the other night.  I started singing a song to him while he took a bath.

Ben: "No."
Me: "OK, no singing."
Ben: "Other."
Me: "You want me to sing a different song?"
Ben: "Yes."
Me: "Which one?"
Ben: "Crawdad."

Rocket Pops!  Homemade!

I was a little shocked right there.  He's never really shown any sign that he was paying attention to what I was singing.

I started singing the crawdad song and he seemed to be digging it.  Just to see what would happen, I stopped a word short and pointed to him.  He finished it.  The next line?  Finished it.  And again.  I'm not saying he was perfect at it, but he was in the ballpark.

Well, shut my mouth and call me Elvis.  I know the last time I sang that song for him... I blogged about it last December.  How the heck did he remember the words?

At three and four, Bubba wanted songs and made up stories at bedtime every night.  Ben only ever seemed to want one song.  After a while, singing stopped being a thing I did, other than that one song.  Mind you that no matter what my mom says and even though I am from Tennessee, I'm no great shakes as a singer.  I liked it though and a kid avoiding bedtime makes a great audience.

Now I find out that he really has been listening and even knows some of the words?  Alright son, any song you want, any time you want it.

Sneaky!

Last week, I had one really bad night's sleep.  I'm not sure what it was...maybe the full moon or something.  Regardless, the next day, I was exhausted, but managed to get kids to school, volunteer in the classroom, attend my older son's "end of year" program, etc.

When we got home, I crashed on the couch.  "Bubba go play with Ben!" I yelled drowsily.  The two of them went in the back yard.  Awww, peace.  Within a minute, Bubba came back in and said, "He doesn't want to play with me, can I go look on the computer?"  "For what?!" "Just some Lego stuff."  "OK...zzzzzz."  At this point, I well and truly fell asleep.

I dreamt that Ben came tiptoeing in from the backyard and past me.  I awoke about 20 minutes later, I guess.  "Bubba, where's Ben?"  "In the back yard."  I closed my eyes again, but they snapped open when I heard a giggle...FROM INSIDE THE HOUSE!  I leaped up, deciding upstairs should be checked first.  Sure enough, another giggle came from my room.  As I stepped in, my foot landed in a pile of goo, and I paused to admire Ben's handiwork.

He was very proud of the toothpaste art he'd applied to our fresh pile of laundry, and Lovely Wife's suitcase.  He was also pleased that he'd learned to operate the big squirt bottle of lotion and how to remove the plug from the sink.  With some trepidation, I looked into the sink...yes, that would be my wife's contact lens case...stuck in the drain...covered with minty fresh toothpaste.

No big deal.  Some hand tools and cleaning agents and about an hour, and everything was almost back to normal (the sink is still draining a little slow).   I felt like it was good penance for my inattentiveness.

I don't have any witty way to end this, so instead, I'll plug AWAARE. 

Not the hose!

It's day 4 of Lovely Wife being out of town.  I'm counting my lucky stars that Ben slept in 'til 6:30 this morning.  The past few days have had some early rising.

The boys are fed, vitamins dispensed, we have half an hour before the school rocket launches.  Ben wants to go in the back yard.  OK, no problem...that will make it easier to fix his lunch and pack some extra clothes for him.

I get him all dressed...a cute outfit if I do say so myself.  Lovely Wife is occasionally critical of my clothing selection skills (which doesn't bother me a bit).  We put on his blinky Spiderman shoes and he heads out the back door.

GFCF pretzels...check.  Peanut butter, juice box, jello cup and spoon, GFCF cookie...check, check, check, check.  Time to write the...uh oh...what's that sound?!  *a stream of water splatters across the back door* NOOOOOOO!!!  He's got the hose and and it's running.  *Sprint, open, sprint* "Ben!  Wait!"

Too late, he's completely soaked.  At least his blinky shoes didn't electrocute him or anything, and he's not very muddy.  We get some dry clothes on him and head off to school.  No worries.

But I am worried.  Did I leave the water on last night, or has he learned to turn on the faucet?  If it's the latter, then the game has just changed.  Maybe not "Skynet becoming self-aware" game-changing, but still, restraint will need to be learned, etc.

You see, Ben absolutely loves playing in running water, and as far as I can tell, it loves playing with him.  It's like he's a water bender from Avatar or something.

If we go for a walk in the cemetery (not as creepy as it sounds), the sprinklers will come on in a way almost guaranteed to get Ben soaked.  It doesn't matter what time of day.  It happens in the morning.  It happens in the evening.  Come to think of it, it is a little creepy.  Maybe the ghosts are running the sprinklers!  Or maybe the maintenance people are just messin' with us.


The other day, Ben and I had to kill about 45 minutes before picking up Bubba and another kid from school.  I thought to myself, "Self, don't take him to Sugarhouse Park, because he's sure to jump in the creek.  Don't go to Liberty because of that 'water feature' in the middle of the playground.  Take Ben to Laird Park.  It's nice and dry and he can play in the sandbox."   I may sound like a spoilsport, but I didn't have any back-up clothes for him.

We headed to Laird and got out to find a group of junior high kids milling about in the middle of the park.  Odd...school's not out yet.  Is it a flash mob?  Hmmm, there's a fire truck over there and it looks like they're hooking up to a hydrant.  Aieeee!  They're turning the hose on the children!

Ben's in the lower left, sopping wet.

It was pretty cool actually, and Ben had a blast.  Happy Trouble.

Happy 80th, Pa!

Today is my dad's 80th birthday.  Happy Birthday, Pa!

Dad's a poet (and a retired engineer, and a hunter, and a hopeless romantic, and a lot of other things).  Here's one of his poems that seems apt for today.

Madelon, Bill the pony, and Dad (11)

Sounds from Childhood

Sounds from my childhood keep running through my mind
Sounds from a childhood long since left behind
Sounds that have lingered all these many years
Sounds that still are like music in my ears

Rain on the tin roof of Granddad's big old house
Warm summer wind sighing through the tall southern pines
Grandma's call to breakfast in the middle of the night
Her Leghorn roosters crowing in the early morning light
Granddad softly praying at the lamp-lit breakfast table
Lowing of the Jerseys as Aunt Mary, Granddad, and I neared the stable
The Belgian mares' low whinny for their morning tub of oats
The grunting and the squealing of the noisy, nosy shoats
The meowing of the barnyard cat for her daily dish of cream
Aunt Mary's invitation, "Charles, grab your cane pole, let's see if we've caught all the catfish in the stream"
The clip-clop of the Maude mare's hooves with me astride her
While Granddad walked home from far-off fields beside her
He's leading "Old" Mable who wouldn't let you ride her
Grinding of the mill gears as we made apple cider
Madelon's shrill shriek when she stepped barefoot on a spider

Sounds from my childhood keep running through my mind
Sound from a childhood long since left behind

I hear the "rain crow" cooing in the early morning light
I hear the whip-poor-will's mournful medley in the middle of the night
I hear the roar of thunder in the far-distant west
Hey, Missus Rain Crow, why not give it a rest
I hear Mother singing as she brushes out her hair
"Precious memories, how they linger"
"A photograph or two, some letters tied with blue,
They're all I've left of you, among my souvenirs"

I hear my Father praying at meal time, in church,
and in the middle of the night
Lord, this was a good man - please treat him right

These sounds from my childhood are still ringing in my ears
Sounds that have grown more dear to me
With the passing of the years
And when my time on earth is done, I pray each childhood sound will go with me
As my soul seeks higher ground

(reprinted without permission, plz don't sue)

That's gonna leave a mark.

There I was, volunteering in the classroom at Ben's school, doing our third session of ABA for the morning.  This time it was "prepositions", e.g. "Ben...put the block between the cups."  Ben was having a really hard time staying on task.  He'd already played the "go potty" card, and was looking a little desperate.

As I reached for the second cup, he clenched his fists and opened his mouth like a shark homing in on a tasty, tasty seal.  Time slowed to a crawl as my amygdala gleefully flipped switches in my head, muttering something like "gotta save this one for the album".  That amygdala is such a ghoul.

mommy, can we have monkey tonight?

The last time this happened was a school field trip to see "Chimpanzee".  Ben did really well on that trip, and sat in the movie for 45 minutes before having to leave.  He had popcorn, his first soda ever, and seemed to enjoy himself.

Then the music got a bit more dramatic, and the narrator said, "And now the chimpanzees need protein."  Guess what chimps like to eat for protein?  Not peanut butter...not hummus...nope.  They like to eat cute little monkeys.


Now, I don't know if they actually eat them in this movie, because just as they were closing in on the little fellows, Ben (who loves monkeys, but not to eat) screamed "GOOOOOO!", took a big bite out of my hand, and dragged me out of the room.

We spent the next 30 minutes or so riding up and down the escalator with another kid and his mom.  Escalators are happy places.

Back to today...

Just as he was about to sink his teeth into me,  Ben did the coolest thing.  He shut his mouth (with no part of me in it), looked me in the eye, and said calmly, "Chewy tube."

I was rendered speechless, but a chewy tube was acquired stat.

I'm just really proud of him. 

Oh, he turned 5 the other day.  We had a party and everything.  It was quite a lot of fun.  He's gettin' to be a big boy.

Lobby, schmobby

I'll just apologize in advance:  this is not a particularly fun post, but I haven't written in a while and I need to get this out of my head.   I just finished a book:   Republic, Lost: How Money Corrupts Congress--and a Plan to Stop It .  The author, Lawrence Lessig, is a professor at Harvard Law School and teaches ethics.  He clerked for Justice Scalia and has degrees in economics, management, philosophy, and law.

Set the wayback machine to 1933

The gist of his book is that lobbyists and big contributors have too much influence over congress.  Congress is supposed to be acting in the best interests of the people, but in many cases, it appears to be acting in the best interests of its funders.

Lessig begins by citing lots of examples where funding seems to make a difference even when it shouldn't, and talks about how this erodes faith in the system. 

The way things are today, candidates are selected by their party based on how much money they can raise.  This means that most congresspeople have to spend 30-40% of their time fundraising.

It hasn't always been this way.  From 1933 until 1995, Democrats controlled the House in all but four years and the Senate in all but 10.  Democrats had things pretty well locked down.  This began to change when LBJ became president after JFK's assassination.  He made the momentous decision to put civil rights at the core of his administration.  In doing so, he ticked off southern Democrats, driving many  of them over to the Republicans.  This shift in power and the rise of Ronald Reagan, among other things, led us to 1994 and Newt Gingrich's Contract with America. 

In 1994, Republicans gained control of both houses.  Between 1995 and 2010, control of Congress changed hands as many times as it had in the forty-five years before.  The fighting has been fierce, and huge amounts of money have been spent on both sides.

Congresspeople have an extreme need to raise funds, and lobbyists are there for them.  Lobbyists can contribute cash themselves, but they also put together fundraisers where their clients can donate to a campaign.   Congresspeople have the power of earmarks.  Professional lobbyists sit at the center of this money vortex.

Becoming a lobbyist is a goal for many legislators and their staffers.  They spend a few terms in congress, make connections, then go to work for a lobbying firm for 10 times the salary.

Lobbying is effective, too.  The return on lobbyists' investment to modify the American Jobs Creation Act of 2004 was 22,000 percent.  On average, for every dollar an average firm spends to lobby for targeted tax benefits, the return is between $6 and $20.

Lessig proposes 4 different ways to solve the problem, assigning them all low chances of success.  I won't try to describe them, but they're different ways to reform campaign finance.  In the past, saying "campaign finance reform" was a sure way to put me to sleep.  Now, I'm starting to think it's one of the most important thing we could do for our country.

fair and balanced?

Why do I care about this?  I've been trying to understand how our legislators could stop short of implementing a mandate that insurance companies cover autism.

I just had a big diatribe here about it, but I deleted it because I've said it all before (you're welcome).

I think there's a lot going on at the legislature that I don't understand...not necessarily nefarious, mind you.  I do know that there were quite a few lobbyists opposed to the issue.  The joke is that together those lobbyists were probably earning more than the cost of funding autism insurance reform for a couple of years.

I found a cool website that lets you track state campaign financing, based on reported numbers.  I'll have to go back to it this November and see how it looks for good old Utah.




Ok, this is not light reading.  Next time, I'll talk about birthday parties or something!

Stay on target...stay on target

Set the WABAC machine to 2012

In college, one of my roommates (B) was very reluctant to get involved in "shenanigans".  Getting this guy to go do stupid stuff was like getting a toddler out of the candy aisle.  One night, after much wheedling and coaxing, he said, "Look, I'll explain it to you...eventually, if humanity doesn't destroy itself, they will invent time travel.  What will people want to do when they have time travel?  They'll want to go back and see what famous people were doing before they were famous.  I plan to be famous, so I have to assume that there are people from the future watching me at all times."

I wouldn't say that my ex-roommate is famous, but he is pretty darned successful.  I'm pretty sure he has a novel and/or screenplay hidden away that may put him on time traveler's radar at some point.  He's got time.

Get this:  when he was in grad school back in the 90's, B met his wife (E) in an internet forum...alt.society.generation-x.  He and his wife spent a good bit of time chatting about deep (and not-so-deep) things before they ever met in real life.  All that stuff is archived -- I just googled it and found some of their posts.  Some day, my friend's kids can look on-line and read their parents' actual courtship.  It'll be kind of like time travel.

My recent posts have exposed me as something of a newbie.  Over the past few days, I have been learning that some adult autistic people don't like Autism Speaks or any attempt to "cure" autism.  They feel that autism is just a new variation of the human genome, and is not a disease to be treated.   They advocate for neurodiversity.

I get neurodiversity and am all for acceptance of peoples' differences.  I'll love both my sons no matter what, but autism is such a huge spectrum.  The difference between being high-functioning and low is immense.  I think it's really, really important to find out how autism comes to be and how to help autists get to the high end of the scale. 

There's quite a bit out there about these topics.  I'm not going to regurgitate it all, but here are some things I've read recently:

• wikipedia on autism rights movement 
• wrongplanet,forums for autistic people 
• interview with temple grandin 
• quiet hands 
• wiki on autism science foundation
• wiki on autism speaks

To Future Ben:

I see you.

You're a pretty awesome kid.  I hope things are working out for you.  We're doing our best to make the right decisions, but nothing's really clear.  Things are pretty primitive here in 2012.  We use something called "gasoline" to power our cars (which do not fly).

To Future Bubba:

You're quite awesome yourself.  You're smart and funny, and you make our lives better every day.  I know you have candy hidden in your room, but I choose to ignore it.

To Future Self:

Quit googling yourself.  Go outside and take a walk.

Groundhog day 3

So...you get it, right?  Trying to get a blog post out is kind of like the plot of Groundhog Day.  The main character keeps waking up to the same scenario that he does over and over again, with slightly different results.  That's from memory...can't afford another distraction right now.

So...distraction number 3?  Reddit.

It's a pretty awesome social news community (or something like that)  I must warn you.  Do not follow any of these links.  They are probably not interesting to you, but if they are, they may lock out 4 hours of your life.  Each and every one of these may suck you in.

parents of disabled kids speak frankly behind anonymous accounts:
dad's shame

happier stuff:
happier parental thoughts

the reddit autism category:
autism sub-reddit

posts from real people (e.g. i am an EMT.) where the community can ask questions.
iama

here's one from a teacher at an on-line university, will make you mad:
on-line u

today i learned..:
til

cool t-shirt:
neurodiversity t-shirt:

the comments about that shirt made me google "what's wrong with autism speaks"

The results blew my mind just a little.

Nothing is black and white. 

Oh crap, Ben just got into the freezer.  BRB.

Edit:  Ok, some things are black and white:

Groundhog day 2

Let's see now, where was I?  I went to that meeting, and wanted to write about it.  Got distracted, but I will now sit down to write about "finding your voice".

At the previously mentioned public meeting, I got the opportunity to say who I was and make some comments.  I've never been good at speaking in public, and I get verklempt when I say, "My son Benjamin has autism."

I google Leeann Whiffen.  It turns out she wrote a book that describes how she and her family helped get her son past an autism diagnosis.

Errrrkkkk!

Distraction #2:  I immediately grab her book from the library and read it.  It describes how she put together an ABA program for her son that was 4 hours per day and included multiple therapists.  She took a big gamble, seeing as it was extremely expensive and took tons of energy, but it worked!  It also describes the intense feelings experienced by parents of autistic kids, the lack of sleep, the self-doubt...you know -- all that stuff.

Caveat:  I'm jealous as heck that she got her child ABA so early.


This woman didn't just find a program... she put her own program together -- that's being a supermom.

We went through the system with Ben -- we did the state's early intervention program (she did that too, somewhat different in her county).  We had occasional visits with occupational therapists, speech therapists, and developmental specialists.  These were never more than an hour or so at a time, and were at most once per week.  We also had a "structured playgroup" and "kindermusic".

Our doctor also got us into the clinic for Children with Special Health Care Needs.  We saw a speech pathologist and a neurologist and an awesome OT whom I've run into a couple of times since then.   He's offered to write a guest post here, so maybe you'll here from him soon.  Ben's hearing was tested several times.  He's got some weird mid-range hearing loss, but nothing that should affect him more than mildly.

I brought ABA up to a psychologist at this clinic, but he told me that Ben's good eye contact meant that he didn't need it.  He said ABA was for kids deeper into the spectrum.  On his recommendation, we spent a year in the public special ed preschool.  They were nice, but Ben didn't make that much progress, bless their hearts.  I'd say that in the first 2 months of ABA, he made more progress than in the entire year before.

Leeann also tried lots of other stuff -- GFCF diet, lots of supplements, and even chelation.  We've been GFCF for a couple of years now, but I don't know that it helps autism.  We think Ben probably has a food sensitivity that we avoid when we're GFCF.  It's one of the next things I want to figure out for him, because it would be nice to expand the family's diet a bit.

Supplements?  Well, both my kids get omega-3's and a multivitamin and when they're sickly, they get vitamin C.  Ben also gets some extra calcium because it's easy to get a deficiency on the GFCF.  Leeann went quite a bit further, following the advice of Dr. Bryan Jepsoson and  attending DAN conferences.

Chelation therapy?  That's going just a little too far for me. 

Leeann also devotes a goodly number of words to immunizations and hints that her son's autism is related to that.  I had a feeling that would be the case when I saw Jenny McCarthy quoted inside the front cover.  Here's how I feel about that.

I'm curious what Leeann's stance is on immunizations and GFCF and so on now that she's a couple of years past an autism diagnosis.  I will say that I'm impressed as heck at this woman.  She perceived a threat to her child and at great risk to herself and her family, she took a shotgun to it.  One or more pieces of that buckshot did the job and her kid can make his way in society.

To top it off, she hasn't stopped... she's out there advocating for kids.  She and other amazing moms parents that I've met in the past couple of years.  Thank you, Leeann Whiffen.  Thank you, amazing parents.

So much is unknown about autism and it's so complex that I have this nagging feeling that 100 years from now, people will look back and say something like, "little did they know, autism was two separate conditions, one caused by air pollution, Motrin, and a genetic mutation common to fathers over age 35, and another caused by vinyl floors, McDonald's biscuits, and the common cold."  My head in a jar will occasionally shout out "Damn you, McDonald's!  Why did your biscuits have to be so tasty!"

We live in an age where information shoots out of a fire-hose.  It's not just water that comes out of it,  there's snake oil and ... darn it, I don't know where to take that metaphor.  Anyway, if you have a kid with autism, evidence-based is the way to go.  Intensive ABA therapy is currently the only thing that seems to help.

Next up:  Distraction #3.  You may do your homework by googling "what's wrong with autism speaks".  Also download the reddit app for your smartphone.

Groundhog day 1

Shiny!

Today,  I attended a public meeting of Utah's Autism Treatment Fund Advisory Committee and it made quite an impression on me, so I want to share that with you.

This was the first time I've attended their meetings, but I recognized several people right away.  There was Cheryl Smith, whose son Carson is the namesake of a scholarship we hope to get.  Also representing parents was Leeann Whiffen, who looked vaguely familiar.

ERRRK!

OK, I started writing that days ago last week.  I was going to write something about "finding your voice" and speaking up for autistics.  Then I got distracted when I started researching the Carson Smith scholarship.  It turns out that it's linked with the politics of school vouchers.  This was Distraction #1.

Other than voting, I've never taken a particular stand on vouchers.  I think that everybody in the U.S. should get to vote when they turn 18.  I think it's important that they should be able to think critically about issues, do their own math, and make good decisions.  Otherwise, our democracy will wind up run by people who vote the way some extremist on TV or radio tells them.  A quality free education through at least high school seems to be the way to go.  Caveat:  My mom was a public high school teacher.


There is a school of thought that says the IDEA should force school systems to provide ABA therapy.  Imagine if all 582,793/47=12,400 autistic Utah schoolkids asked for $30,000 worth of treatment ($372M) and Utah's government agreed to it (that would be increasing the education budget by about 10%).  That's about as likely as forcing the Fed give its land to Utah.

I feel pretty strongly that autism is a medical condition that should be covered by insurance.  Unfortunately, that was shot down this year, so, yea, I'll have our voucher application in on time, because ABA is expensive and you can only take out so many mortgages on one house.

Stay tuned.

Spring Break! Wahoo!

Up! Up! Down! Down!

Ben has spring break this week, so no school for him.  Sadly, Bubba's break is next week.   We might have tried camping or something if they'd aligned.  Fortunately, the weather's been nice, so we've been taking the dog for walkabouts.

Our favorite place is up in the foothills.  Some biking enthusiasts have constructed a fairly elaborate BMX arena.  There are lots of ramps and steep drops and banked turns -- it's a most awesome place for tiring out a high energy kid (in the middle of a weekday when the bikers are not there).

Pretend you're a bike!

Ben and Tucker spent the better part of an hour powering up and down some steep hills and are both wiped out now (Ben is asleep across my lap).

This reminds me of when we were on vacation in Albuquerque in the 80's.  Dad and I decided to play some tennis and we found a court.  He and I were having a friendly game when a couple of oldsters came up and challenged us to some doubles.




My dad and I were both pretty fit and both tall (6'3").  These guys were in their 60's and not in the best of health.  One of them had a glass eye, and the other had a heavy brace on his knee.  We decided to go easy on them.

Much to our surprise, they started beating the tar out of us.  I'd like to blame it on the altitude and the extra bounciness of the balls, but in truth, they were just playing better than us.  After a couple of games, Dad and I were pretty embarrassed.  I have to hand it to my Dad though -- he didn't give in.  He pulled me aside and, with a gleam in his eye, said, "Hit it to his blind spot and run the other guy around."

Sure enough, we didn't lose another game.

Good sunrise.

Castle Valley Sunrise

I'm a bit dense this week.  I think it's the spring allergy season kicking in.  That and Ben has been having some sleep issues.

I had a post pretty much ready to go, but managed to delete it.  Darn.  I say, "Darn," but I really mean something stronger.  When you only get to write every now and again, losing a post is a blow.

Alright then, nothin' to be done except to move on.

F is for friend

The deceased post was about a weekend we spent in southern Utah in a cabin.  We were there so that Lovely Wife could run in a half-marathon, and we stayed with 3 other couples and 4 other kids.

It was a really fun time.  The thing that struck me most was the importance of friends, for both kids and grown-ups.

One of the boys there is 9 months or so younger than Ben.  He's neurotypical, so he was talking a mile a minute and following Bubba around.  For at least part of the time, Ben latched on to that samba line and was actually, kind of, in a way, playing with another kid.  It may not seem like much, but historically, Ben completely ignores other kids, treating them like inanimate objects.  Hearing Ben actually say something to "C" and getting a response...priceless.  This was a win.

Adorable.

Here's to friends for grown-ups.  When you have a special needs kid, it can be really hard to maintain your friendships with other adults.  When you go to someone else's house, you have to spend 90% of your attention wrangling your kid.

Staying in a cabin with us (or camping, or whatever) is not the same as with typical families.  One of us grown-ups is devoted to the special kid.  The other one may be able to handle everything else, but it's definitely not as easy as hanging out with typical folks.  So...thanks...thanks for hanging out with us.  It means a ton.  It's very easy to get isolated and go days without speaking to an adult (like when LW is on a bidness trip).  BTW, LW is away on a trip right now!



And when you ask me "how's it going?' and I unload the pure and unadulterated agony of failure from the Utah legislature... thanks for not running away (this means you, John V).

Anyway, I've got a dozen things buzzing away in my brain right now, and there's no way to put them into a decent blog post, I'll just have to purge that stuff I guess.  I do have to tell y'all that there's a new study published about the incidence of autism.  Utah is winning!

Planes! Big! Fast! Yea!

Bubba teaching Ben to salute in front of the SR-71

This past Monday, neither boy had school (teacher work-days), so we headed up to the Hill AFB Museum in Ogden.

My niece's dad was in town, so we brought him along for some airplane-viewing fun.

I don't have any deep insights or clever commentary about the trip, but it was fun and I thought I'd share some pictures with y'all.

There are some great things about the AFB museum:

• it's very rarely crowded
• it's not too far away (<45 minutes)
• it's free
• there's lots of walking, indoors and out
• the planes are amazing and capture everybody's attention
• it's a great place to discuss modern history

Ben in front of a Stratofortress, makes me think of Dr. Strangelove

On trips to this museum, Bubba and I have talked about WWI, II, Vietnam, and Korea.  We talked about spaceflight and nuclear weapons and growing up with the idea of Mutually Assured Destruction.  We've talked about Kennedy and the Cuban Missile Crisis.  We've talked about aerodynamics and hydrodynamics.  Hmmm, I guess it was mostly me talking, but he listened happily.

Ben loves to look at the swoopy shapes of the fighters and seems a little awed by the gigantic transports and bombers.  It's not too hard to keep him on the right side of the fences.

More lens flare than J.J. Abrams

 Anyway, it was a great field trip.  What are your favorite places to take your kiddos?

Sharing time

Ok, time for another "award".  This one's from Jim, over at Just a Lil Blog.  It's the "Tell Me About Yourself" award, and it works like this:

• Share 7 things about yourself; 
• Pass the award along to 15 bloggers you love reading; 
• Contact your cho­sen bloggers to let them know about the award!"

I liked what Jim did, making the 7 things be from his childhood.  I think I'll call mine "The Harrowing Adventures of Young Jon":

1)  I shot myself in the eye with a BB gun.  

I was probably 10 years old and was out plinking at things with my trusty Crosman pump.  I took aim at this rotted out stump of a tree.  It was rotted out in such a way that the part that was left behind was roughly in the shape of a parabolic mirror.  Apparently, I was standing in the focal point.  When I fired, I saw the BB go out, and incredibly, saw it come right back for my eye (which I closed in time).  The BB didn't have enough energy left to do any damage...it was just like being thumped with a finger.  Nobody else was around.  I sat down and thought about it for a minute before moving on.

This taught me to choose my targets carefully.


2)  I was very nearly impaled.

A freshman in high school,  I was horseback riding with my friend Slasher.  It was early spring, and there were some patches of ice on the trail.  We were riding along a logging road, pretending to be those guys from "Alias Smith and Jones" (whose real names were Hannibal Heyes and Kid Curry).  

The area we were in had recently had a bunch of saplings cut -- they used them at the local paper mill to stir the vats or something.  Most of them were right alongside the trail, and cut at an angle about a foot off the ground.


Slasher/Kid Curry: "There's just one thing we gotta get, Heyes."
Me/Hannibal: "What's that?"
Slasher:  "Out of this business!"


We both urged our horses into a gallop.  Yeehaw!  We rounded a curve and my horse, Lady, slid on an icy patch.  She went down and I managed to dismount enough to keep my leg from getting squished, but hit a little hard on my side.  As I got up, I discovered that I'd missed landing on a cut sapling by less than half a foot.  Yikes.


This taught me to pay attention to my environment, especially when re-enacting 70's TV shows.


3) I was very nearly impaled AGAIN.


Junior or senior year in high school, I was canoe camping with some buddies on the Buffalo River.  I think there had been some rain recently, making the river run fast.  At one point, we rounded a bend and were faced with a choice:  try to scoot over some *really* shallow stuff, or try to make it through the swift part.  The downside of the swift part was that it meant risking getting swept into a big mess of beaver-chewed punji sticks.  


As I recall, Mark Opie Potter Bucky Johnson steered his canoe into the shallows and ran aground.  I can't remember who was in my canoe, but we got sucked into the nastiness.  We pulled hard, but it didn't help.  I remember our canoe tipping enough that it slurped up some of that fast current and was sucked under, flotation chambers and all.  In the space of a few seconds, I was swept towards a hedge of beaver chewed stakes.  I caught the stake I was about to be impaled on with both hands and halted the process.  Pushing sideways let me sweep on down the river.  For that one moment, though, it was "work hard, or a 2" spike will gut you."


This taught me that beavers can mess you up bad.


4)  I used to be able to sleep through anything.

10?  11?  I don't remember exactly when this happened, but it was a dark and stormy night.  I was in bed, asleep, and thunder woke me up.  That and the flickering light of static on the TV screen in my room.  I thought that I'd turned the TV off, but I got up and walked over.  I tried to turn the power off, but it was already off.   To my mind, there was only one explanation...ghosts.  I unplugged the television and fortunately, it went dark. 


This taught me that sometimes you will not know why the universe does what it does.  It's ok to go to sleep without figuring it out.


5)  I played baseball half-blind.

I started playing baseball when I was 6 years old, I think.  I played outfield mostly, and I would listen for the crack of the bat.  I would watch other peoples' faces to figure out where I should position myself.  If I did it right, I would spot the ball for the last 20' or so of its flight.  I would occasionally catch it.  Personally, I think it was pretty impressive that I ever caught a ball under this system. 

It wasn't until the summer between 7th and 8th grade (I think) that we went on a driving vacation out west and Dad said, "Kids!  Look at those snow-capped mountains!".  I, of course, said, "What mountains?"  Dad immediately began quizzing me about when I could read billboards.  More often than not, I could not read them at all.  When we got back from vacation, I went to the eye doctor, and baseball became much easier.  Ridiculously easy.  


This taught me that we all see the world through different eyes.  And that you should get your kids eyes checked, 'cause they don't know what to tell ya.  They'll just assume that everybody sees trees as blurry green blotches.


6)  I didn't know what a "balk" was.

Once I got my glasses, things were a bit easier.  I wound up on the "good" team, playing first base, second base, and as a back-up pitcher.  Keep in mind that I was a country kid who didn't hang out with the city kids and never, ever watched baseball on TV.  I never read a rulebook.

For one game, we got pretty far ahead, and coach Wayne McIllwain decided to let me pitch a little.  I did, and in my recollection, I managed to let runners get on 1st and 2nd.  With the next batter, Ricky, the catcher, started watching for the runner to steal 3rd.  Just as I was about to unleash my super-fast fastball (the only pitch I had), he would look over to see if the runner was going.  This made me halt my throw.  (I didn't want to hit him!)

The crowd gasped.  I wound up again, and it happened again.  People were going nuts.  I didn't know what to do.  Part of me knew it was weird that I wasn't throwing the ball, but it'd never happened before and I didn't know quite what to do.

The crowd was chanting, "Balk!  Balk!," which made no sense to me.  Was that a chicken noise?  What did it mean?  The coach came out and asked me what was going on.  I told him...I didn't want to hit Ricky.  He told me to just throw the damned ball, so I did.  It was the end of the game anyway, but the absurdity of the situation stuck with me.  Here were a hundred people that had one expectation, all looking at me who hadn't read the rulebook.  I didn't play baseball after that. 


This made me want to only participate in things where I knew the rules.


7)  I saw the explosion.

When I was in 8th grade, there was a tragedy in my home town.  Snow hit partway through the day, and my sister drove down from high school to pick me up (snow meant no school in Tennessee...Utahns would scoff).  

We stopped at the pharmacy to get a Slurpee, and afterwards were walking towards our car...an orange 1971 Pinto.  We climbed in, and Sis turned the key in the ignition.  I don't remember the sound, but I do remember the heat on the back of my neck.  We both looked back to see a fireball rising in the sky, about 2 blocks away. 

Sis and I looked at each other, and said in unison, "Let's get out of here!"  She jumped out of the car and started running away.  I stood up and said, "Let's take the car!"  We did.

Two of my friends' fathers died in that explosion.  

What did it teach me?  I'm going to say, "Life is fragile and precious," but I don't think I can really articulate the impact.
----------------------


I'll tag somebody soon...I'd rather publish this and edit later.  Night night.

I will paint your face with my blood!

I will paint your face with my blood!!!

So...there's this videogame I play.  One of the bad guys from a while back says, "I will paint my face with your blood!"  He's kind of a bad-A Viking guy and it sounds appropriate coming from him.  Not so much for us.

While I was finishing up my last blog post, I asked Bubba to take Ben in the back yard and play with him.  He agreed, after picking out his "hobbit" outfit for tomorrow's school project.

Right about the time I hit "publish", Bubba carried a screaming, bleeding Ben inside.  OMG, that kid can bleed.  If there's an Olympic event for bleeding, I think we're a shoe-in.  And it's not just that he can bleed a lot...he can get artistic with it.  He did some Jackson Pollock in our kitchen, and then he gave me a good looking over.  Quite deliberately, he put his finger in some arterial blood and then smeared it across my cheeks.  Then he took a little venous blood and built some sort of artistic statement  across my forehead.

He's fine...stop worrying, Mom.  We've had a bath and are on track for bed time.

BTW, have y'all seen Dexter?  No reason (Mom, don't watch that show).