Uncharted Waters

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

Here's most of the original post:

The boys

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

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

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

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

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

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

Maybe yes, maybe no. 

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

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

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

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

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

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

Life on Mars

This morning, getting ready for SCHOOL!

I've been running silent for a while.  After two years in a school just for kids with autism, Ben started in
a classroom alongside typical kids about 3 weeks ago.  I wasn't sure how it was going to go, so I didn't want to talk about it.

When we started planning this transition back in December of 2012, it seemed simple:  "Oh sure - we'll build a rocket and fly it to another planet  - easy-peasy."

We calmly let the application deadline to re-up at our special school go by - "No problem, Earth is the perfect place for humans, but we should really check out the other planets.  If we want to plan ahead as a species, we need to get out there."

We searched for the right school to attend and experienced some dismay as the options dropped away - "Mars it is!"

We found a company to do ABA therapy in preparation and throughout the school year.  It's expensive and not covered by insurance, but we applied for the Medicaid waiver in hopes of help with the costs.  We had heard it was underutilized, but apparently that's not the case any more.  We were "not selected."  No problem - "Ok, we hired SpaceX.  Between deficit spending and pulling some money out of the Social Security fund (thanks Ma and Pa), we can cover this."

Things went surprisingly well.  Ben's teachers are all we could hope for, and the school has been very welcoming to our therapy team.  Drop-off feels like we have to pull off a Mars landing every day, but other than that, reports are good.

Yesterday morning, at drop-off, we went into the "large motor room" to get some ya-yas out before the day started.  A girl from Ben's class came over to us, and silently handed him a train car that I recognized from home, and then walked away.  Ben held it up to me and said, "She gave me my train.  Oh, that's so nice of her!"  I said, "Who was that?" and he said, "That was Becka." (incorrect, but close)

It's hard to get across how much that interaction meant.  I'll just say, I'm glad we're doing what we're doing.

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.

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.