Jungle Gold: Family Emergency

Not a light topic today...sorry.

One of our friends just posted this to Facebook.  It's an episode of a reality show about two men, George and Scott, who are prospecting for gold in Ghana.  When Scott's 2 YO is diagnosed with an autism spectrum disorder, he flies home to be with his family.

Around 24 minutes into the episode, the wife explains to him that there is therapy that can help their son, but that it's very expensive, and not covered by their insurance because they live in Utah.  Yup...they're from Utah.

If they lived in Alaska, Arizona, Arkansas, California, Colorado, Connecticut, Delaware, Florida, Iowa, Illinois, Indiana, Kansas, Kentucky, Louisiana, Maine, Massachusetts, Michigan, Minnesota, Missouri, Montana, Nevada, New Hampshire, New Jersey, New Mexico, New York, Pennsylvania, Rhode Island, South Carolina, Texas, Vermont, Virginia, West Virginia, or Wisconsin, they would have a still have a scary diagnosis to deal with, but at least they'd be able to access medical help without going bankrupt.

I don't watch TV much, and reality shows less, but this scene really impressed me.  They managed to sum up in a couple of minutes the emotional rollercoaster that so many Utah families have experienced:  getting a diagnosis, then learning that there's therapy that works for most kids, but it costs more than an Ivy League education and is not covered by most insurance in our state.

Thanks Scott and Andrea for sharing that moment for us.

And welcome to the autism community...we're on a road less traveled and it can be hard, but there's a lot of joy and good friends to be found and occasionally gold.

I hope y'all find some gold.

Lots of stories to tell

Everything's OK.

Sometimes I feel like autism is everywhere I look.  I talk to parents, teachers, therapists, and doctors about autism.  It fills my Facebook feed, podcast feed, e-mail, and a good portion of my thoughts.  I am a little pleased that only about half of what I read is autism-related. 

All this information forms a network that exists in my head/computer/iphone/cloud.  It's my 2013 mental model of the world.  It's not very orderly, but rarely am I surprised when things get added to it.

Ben sometimes likes to drag a partially unwound roll of duct tape around our house and back yard.  Things get stuck to it, and after an hour of wandering, he's usually amassed quite a collection.

We encountered people with autism in their lives twice in the past 24 hours.  Out of the blue, Ben picked up two living, breathing people with his magic duct tape and stuck them right on top of my freaky cyborg mental model of the world.


Balloon Lady

Last night, we went to Bubba's end-of-school picnic.  It was quite a lot of fun.  We spent a good bit of time on the slides and swings.  It was great - Ben's motor skills are coming along and he at least tried to interact with the other kids.  He was listening to them and occasionally interjecting things, even if his voice was too quiet to be heard.  It was especially poignant to see him recognize a kindergarten teacher for a class we tried unsuccessfully to get him into.  He wanted to talk to her, but I don't think any of us knew what to say.

A little girl on the swing asked me to hold her balloon so she could swing more effectively.  We agreed that I would hold it while she got on and then she would hold it.  Ben wanted his own balloon animal and she was very helpful in describing where the balloon lady was.

We ran into Mommy on the way, and Ben stuck with her while I got in the long line.  A few minutes later, Ben showed up with a very nice balloon animal.  Lovely Wife had been hanging out with him at the front of the line where his excitement had been overflowing.  She whispered to me, "The balloon lady has an autistic kid.  She made one for Ben and said to come back when he popped it."  Which he did, of course.  I took him back to Balloon Lady and she graciously fixed the problem, no questions asked.  She was too busy to tell me her story, but I have her card.  We'll need a Balloon Lady one of these days.

Fireman

The second random autism encounter happened today.  After school, Ben and I headed to the grocery store in the half hour that we have before picking up Bubba.  It was to be a lightning strike trip.  I had my list...we would be in and out and in line to pick up Bubba and some friends.  Then I saw the fire truck.  I couldn't resist...I parked next to it.  We got out and ambled over to look.  A firefighter said, "Would you like to see inside the truck?"  He started asking Ben some friendly questions which were met with little coherence.  I said quietly, "He's autistic" and the firefighter took a breath and said, "My two sons have autism - they're 17 and 22."  He looked me in the eye for only a moment, but his eyes held decades of experience.  "Come check out the truck!"  He opened the door and I popped Ben up on my shoulders to see.

We talked a little.  I told him about an idea I have to get autistic kids to meet firefighters, police, and maybe search and rescue people at a barbecue.  It might be worthwhile the next time a kid wanders.  He was just starting to tell me about his kids when Ben needed to leave.  I wanted to hear his story and his kids' stories, but time and tide and autism wait for no man (I added the autism part).

I was struck by twice meeting parents of autistic kids in so short a space.  Thanks, Ben.

Sometimes the steepest paths are the most rewarding.

I have a new role...I'm heading up the Utah Autism Coalition this year.  We're trying to make it so that autism is covered by health insurance in Utah.  As part of that, I feel it's my obligation to bring the stories of Utahns dealing with autism to the attention of their elected officials.  If you live in Utah, and autism has affected your life, feel free to tell me about your experience...anything you want to share, anonymously or not.  If you don't think autism should be covered by insurance, I'd especially like to hear your reasoning.  You can e-mail me at vorpaljon (at) gmail.com or comment here or on Facebook.

Breaking Bad (news)

Have you heard about the Canadian version of Breaking Bad? It's about a high school chemistry teacher who is diagnosed with cancer. He gets free healthcare and gets better. There's no second season.

Ba-doom-ch!

(Mom:  Breaking Bad is a show about a guy who starts making an illegal drug to save his family from financial ruin.  Things go poorly.  You don't want to watch it.)

Here's the Salt Lake Tribune story about how this year's autism insurance mandate croaked yesterday.  Here's my favorite quote:

"After conferring with House and Senate leadership — I don’t have the support of the insurance industry, and I frankly don’t have the votes for the bill in its original form."

I think Senator Doctor Shiozawa is awesome.  He's intelligent and articulate and I hope he stays in politics for more than one term.  We don't really have a two party system in Utah, but elect more guys like him and it'll be okay.

A couple of things irk me about this.  The bill quietly transmogrified into more pilot program.  The pilot program can help some people, and I'm happy for the kids who get help (assuming it passes).  What irks me is that it happened without public debate.  I want to hear the arguments against it.  I want our elected officials to stand up and say why they won't pass this bill.  Maybe there are really good reasons.  I'd like to know them.

The other thing that irks me is highlighted in yellow above.  Why is the insurance industry's voice more powerful than doctors and people who need treatment?  If their arguments are that persuasive, why haven't we heard them?  Insurance coverage for autism is required in 32 states - has it bit into insurers' profits there?  How much?

Don't worry about us - we're going to get Ben what he needs.  Our family can summon the resources with or without insurance.  There are a lot of families who aren't so fortunate.  Maybe a little high school chemistry can help them...*

*Happy Trouble does not condone the manufacturing or selling of illicit goods or services.

Train of thought

3:00 a.m.

The sound of a TRAX train coming down the curvy hill at 400 south wakes me up.  It's more than a mile away, but the wheels make quite a racket as it navigates the fault line.

My brain whirls into activity.  This time last night, Ben woke up with a cough and a fever.  We saw the doctor yesterday, and he can go back to school if there's no fever this morning.

I think about D and S, two friends with kids that we haven't seen in a long while.  They used to live right near the squeaky part of the train track.  We keep meaning to get together, but it hasn't worked out in a while.  Maybe we can see them this weekend if everybody gets healthy.  I think about a friend's birthday party I missed this weekend, how to make Valentine's day special for my wife, and what we should do for the brief overlap of spring break for our son's different schools.

zzzzz

My phone buzzes softly next to the bed with new e-mail.  I pick it up and find spam from my older son's Lego obsession.  I also see the mail I got earlier in the evening from a pediatric neurologist.  We're looking for someone to help us manage Ben's case, and she's been very helpful.  It's another expense that won't be covered by insurance, but we have to do it.

My mind drifts to Senate Bill 55, just introduced this week.  That would be huge for us, and many of the families we've met through Ben's school.  The way last year's bill was put down is a painful memory, but we'll keep trying for as long as it takes.

I'm planning to go to the Capitol to talk to our legislators on Thursday, but that's going to be hard if Ben's still sick.


zzzzz

The cat pads into our room and leaps onto my chest, looming over me like a gargoyle.  She reaches out with one paw and squeezes my chin.  I know she wants to be fed, but no way am I walking past Ben's room.  I am quiet like a ninja, but she will start meowing.  I gently squish her to my chest and pet her 'til she's mellow.
I pet her like a Bond villain and my brain starts up again.

Kitty, do not hop on Pop...

I think about how interested Ben was in reading Hop on Pop yesterday - he was identifying words - maybe just by memory, but that's still encouraging.

The ipad has been great for him.  There's one app that involves lots of matching and prepositions and such.  It makes a silly "boop" sound when he picks the wrong thing and he rarely waits to hear the instructions before he starts touching the screen.  One night I sat down with him in a quiet moment and held the pad out of his reach until the instructions were given.  He was getting 90-95% of things right...things we didn't know he knew.

I think about how I need to learn how to make apps.  A few minor changes to how that one was implemented would make it 10x better for him.  Maybe I could even make some money that could help with speech therapy and all those other things our insurance company doesn't cover.
zzzzz

4:30 a.m.

Ben rattles his door.  I slip on my britches and go to check on him.  He's turned on his light and is rocking in his big orange chair, happy as a clam, but bright with fever.

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.

Autism? Walk it off, kid.

I did it! (once)

So, I've been getting involved with our Utah government to try and get legislation passed that would force insurers to stop excluding autism.

Big news!  So, Utah Republicans have come up with a way to help 800 children with autism get the therapy they need.  I'm glad that some kids will get help.  I have some concerns though.

According to the Children's Defense Fund, there are 868, 000 children living in Utah.  From what I understand, Utah's autism rate is higher than the national average at 1 in 77.  That means we have about 11,000 autistic children.

So, 800 kids will get help when 11,000 need help.  Hmmm.

I'm going to a town hall meeting tomorrow night to learn more.  I'll try to stay positive.  Meanwhile, Ben is having a really hard time getting to sleep tonight.  Potty training has been going well at school, but not so much at home.  Poop.

stomp, Stomp, STOMP!

There's big stuff going on around here in Utah.  It feels like a herd of dinosaurs have moved into the neighborhood.  The good news is that if we can down one of them, our tribe will eat for a month.  The bad news is that there is a very good chance one of us will get stomped on.

What am I blathering about?  It's the 2012 legislative session.  This year, there's a bill (HB69) that would mandate that insurers cover evidence-based treatments for autism.  If you live in Utah, please e-mail your senator and representative to let them know you're for it.  You can go here to find their contact info.

Apparently, being for HB69 means you also have to be against SB138.  Unfortunately, 138 just passed its second reading - here's the vote.

I don't have a lot to more to say right now, but did want to share this video.  I just saw it a couple of weeks ago for the first time and it made an impression on me.  Enjoy: