Monday, April 30, 2012

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:
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.

Saturday, April 28, 2012

Groundhog day 3 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.

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

today i learned..:

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.


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 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.

Friday, April 27, 2012

Groundhog day 1

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.


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.

Friday, April 6, 2012

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.