Thursday, February 23, 2017

Hey, what's the big IDEA?

I've been trying to write a blog post about this for some time, but I keep deleting and starting over.  The other night, something made these thoughts boil over onto Facebook:

I was just looking at my Representative's web pages, trying to figure out if he's going to do a town hall, and came across this statement: "Anything we can do to reduce the power and influence of the federal government will strengthen our economy and help us reclaim the American dream." Anything? No sir... things can be streamlined, made more efficient, more accountable, but there are limits. As your constituent who is the parent of a kid with special needs, I want a Department of Education that works. As someone who grew up in a rural area where dioxin was dumped into the river for 30 years and has a mother with Parkinsons AND as a Utahn who can see two Superfund sites from his back yard, but only on days when there's not too much pollution, I want an EPA that can do its job. I want a CDC that can handle epidemics and a FEMA that can help in emergencies. I want a DOJ that helps protect our civil rights. While we're at it, I'd like to know that our elections are fair and free from foreign influence AND that our president is not a Russian tool who's using his office to line his pockets. You're my representative, Congressman Chris Stewart, and if you're not advocating for my interests, I'd like to know why.

There's only so much you can say in a Facebook post, so here's the rest of the story.

Deliverance: Nominated for 3 Oscars!

There's currently a bill before congress to abolish the Department of Education, co-sponsored by Utah's own Jason Chaffetz.  Supposedly, this bill is mostly posturing, but it's a real poke in the eye.  It's a big guy in a track suit walking into my shop and saying, "Nice place you have'd be a shame if something happened to it."  It's running into a guy with a shotgun in the woods who tells me I have a pretty mouth.  It's not funny.  

I want to know what this congressional threat is supposed to mean for both my sons, but especially for my son who has autism.

It wasn't that long ago that people with autism were institutionalized as a matter of routine.  What was that like?  If you've got a strong stomach, you might want to see Geraldo Rivera's 1972 expose of Willowbrook, a state school in New York.  Here's a clip:

That's what it was like before a whole lot of people got the federal government involved.  I'm not suggesting it was like that everywhere, but it was like that somewhere.  I don't think if the federal government took its eyes off education, states would revert to a situation like that...not immediately anyway.

In 1975, the Education for All Handicapped Children Act was passed.  Before that, only about 1 in 5 kids with a disability was allowed in public schools, and many of those that were allowed were "warehoused" - kept separate from the general classrooms.  I experienced this personally when I was in 3rd grade (or so) , which would have been 1973ish.  I did well on an IQ test and it was decided that I should have a chance to get education beyond the regular classroom.  Periodically, I left my class and went to the special ed building - a separate structure from the main building.  I was given a workbook and tried to focus on my self-guided studies while the special ed class swirled around me.  It was not a successful educational experiment.

In 1990, the EAHCA was expanded into the Individuals with Disabilities Education Act, co-sponsored by Utah's own Orrin Hatch (thank you, sir).  As difficult as the Individualized Education Plan (IEP) process may be, it's a lot easier than starting off with a lawsuit to get your kid an education, which is what had to be done before.  Knowing that every kid has a right to a "free and appropriate public education" (FAPE) in the "least restrictive environment" (LRE) is really, really important to parents of special needs kids.  Count your blessings if you've never needed to learn those acronyms.

It took a lot of work, from a lot of people, to get to the point where we are now.  It's not easy being a parent, and it's harder being a parent of a kid with special needs.  I'm in awe of those parents of kids with special needs back in the 60's and 70's who stood up for their children, filed lawsuits, pestered their congressmen, and got us EAHCA and IDEA.  They didn't even have Facebook to help organize. 
Who's wrong?  This lady!

The Department of Education hasn't been dissolved yet, but we do have Betsy Devos in charge of it.  In her confirmation hearing, she was asked if schools that receive federal funding should comply with the IDEA act and said, "I think that is a matter best left to the states."   

Meanwhile, we've got Jeff Sessions for Attorney General who called the IDEA act "the single most irritating problem for teachers throughout America today".

In my opinion, we should be increasing federal funding for IDEA to the 40% that it was originally intended.  How about pushing for that?

From their websites, a lot of Utah legislators are talking about choice and charter schools, just like Ms. Devos.  They seem to be in lockstep.  

I don't know much about charter schools, but some articles I've read say that although they have to accept kids with special needs, some charters will push them out over time to keep their success rate high.  

Here in Utah, we have a couple of charter programs just for kids with autism.  I know many parents with kids in them, and they feel lucky to have made it through the lottery to get in.  Lucky sounds right, since finding the right public school placement and fighting for services in an IEP meeting can be really hard - especially given our public school budget.  

If my kid made it through the lottery for one of these schools, I'd seriously consider it, but it would be a hard choice because we'd be missing out on mainstreaming and inclusion. 

I think that educating our kids - all of our kids - is one of the best investments we can make in our future.  Right now, it looks like there's a wrecking ball poised to smash the institution built to address that.  I'd really like to hear from my legislators about this. 

Rats!  I'm out of time, and I didn't even get to the EPA.  Maybe next time.

Monday, October 24, 2016

Bonsai encounter

Tempting things to touch
My soon-to-be 15 year old has a passion for Japanese pop culture.  He's into anime and manga bigly.  We went to San Francisco to visit grandparents over UEA weekend, and my Lovely Wife wanted to take him to Japan Town for some Mom/Son quality time, primarily at the Japan Center Mall.  The way it worked out, I shepherded Ben around the mall while they frequented the most awesome bookstore.

Ben did a high speed depth first search through the entire mall.  Seriously...he went into almost every store (and the fountains).  When he got to the bonsai store, he took a pause like a skier at the top of a breathtakingly beautiful run.  There were pots with water, containers with pebbles, things with wheels and handles, and beautiful miniature trees.

Moment over, he plunged into the store.  I told the proprietor apologetically, "He needs to touch everything."

The gentleman thought for a second and said, "He has learning problem?"

"Yes, he has autism," I said.

He replied, "My son too."

We looked at each other for a few heartbeats, not knowing what to say, but knowing that we probably had a lot in common.  Ben zoomed out of the store, and I followed, throwing a "have a nice day" over my shoulder.

We have encounters like this surprisingly often.  I just thought I'd share this one with y'all.

Sunday, September 27, 2015

Three roadtrips, THREE

For this year's Utah State Bar convention, we decided to bring friends along for our older son.  We loaded up a trailer with bikes and gear and friends and headed to Idaho.  The trip was great, but the thing I can't stop thinking about is the ride up.  It was about 5 hours with 3 chatty 13 year olds in a car with Ben.

This turned out to be a kind of immersion therapy for him.  The older boys would hold up their smartphones and say, "Look at this funny video" and Ben would inevitably say, "I want to see!"  That may not seem like a big deal, but for Ben it was.

The days spent in Sun Valley were filled with scooters and bikes, and Ben made the leap from strider bikes to one that actually had pedals.

Progress moves in fits and starts, and that week was a leap ahead for Ben.

A few weeks later, Lovely Wife pointed out to me that we hadn't had a non-working vacation in a loooong time.  She has a high stress occupation and when she says she wants a break, it's to be taken seriously.  I am mostly a hobbit, content to stay in my cozy hobbit hole, but she's a bit Tookish.

We rented a pop-up camper.  We have been backpackers and car campers and river rafters, but for the past few years, the prospect of camping just seemed too hard.  Sleep is a huge issue for Ben and sleeping on a pad in a tent makes it that much harder.  Wandering is an issue too, so the idea of having an enclosed space was attractive. I won't go into detail, but having our own portapotty turned out to be extremely useful.

Look at this camping paradise:

(stock photo - otherwise you'd see sleeping bags and juice boxes and legos and rocks and all kinds o stuff)

We headed up to the Grand Tetons.  It's only about 5 hours from Salt Lake.  That may seem like a long way if you're not from around here, but in the West, it's not so much.  Heck...oil has dropped below $40/barrel, and Obama's letting folks drill offshore in the Arctic.

I don't know that these folks are the best, but they were good to us.  The trailer was easy to tow, gas mileage wasn't bad, and set-up didn't take long at all.

Wednesday, we drove in to Gros Ventre campground.  The lady from Alabama who checked us in had a lovely Southern accent and was very helpful.
Actual camper...surprisingly roomy!

Setting the camper up was pretty darned easy.  That's helpful because transition times are ripe for wandering and mischief.  William was very helpful at keeping Ben out of trouble for the 10 minutes it took us to get the site all fixed up.

Thursday, we headed over to the Gros Ventre river and did some wading.  It ranked right up there with our creek back in Tennessee (no crawdads, though).  There was some stone skipping (Ben is pretty excited about finding skipping stones, so yea!).  William shamed Lovely Wife into floating down the fast part of the river, marshmallow sticks were found, and a good time was had by all.

Having a campfire was a big bonus of camping.  Ben, after some work, was consistently able to say, "Excuse me, can I burn this?"  This was important - the question was asked about some things that one would definitely not want to burn.

Friday, we rented some "duckies".  These are inflatable kayaks, and I was pleased to see that new kayaks are way better than the ones I was used to.  Lovely Wife was awesome and took Ben in a two-person kayak while William soloed in his own boat.  They put in just below the dam at Jackson Lake and I went to wait at the take-out point an hour or so downriver for some alone time.
Ben stayed in the boat the whole time!

On Saturday, we checked out some dispersed campgrounds.  We liked the campground we were in, but to be in a place with fewer neighbors where Ben could be Ben without tramping into our neighbors would be really great.  We found a place that we want to try out next time.  I'm pretty psyched.

After checking out the more remote area, we went for a hike around a lake and had a little picnic.  A helpful German man with a large can of bear spray warned us about the Grizzly he had just seen.  We saw pronghorn antelope, bison, and moose on this trip, but no bears.  We did keep them in mind.

I got an idea from the OT sessions this summer - I took a rope, threaded it through the grommets on a spare tarp and strung it between two trees for a hammock/swing contraption.

It worked pretty well for a while - Ben got happy and relaxed.  Then we did some stress-testing to destruction.  Next time, I'll have one that can handle the load.

We headed home on Sunday.  It was an awesome time - everyone (pretty much) unplugged.

A few weeks after THAT, we headed to Big Sky, Montana so that William and Lovely Wife could run in a grueling trail race.  It was a whirlwind of a weekend, and I didn't take many pictures.  We got to spend quality time with some cousins and that was great.  Ben's fascinations for dogs and babies and very small rocks were both a blessing and a curse.

I don't have much of a message with this post, other than to say that it's good to get out and do stuff, (once in a while), no matter how hobbit-like you may be.  All of us, folks with autism included, grow leaps and bounds when we step outside our hobbit holes.  It's a big reason why I married that Took.