Thursday, April 16, 2015

It had to be, and it was up to me

The Brown family met the Governor of Colorado today, and here's the proof:
Today was the formal bill signing of SB15-015, and it was awesome.  This photo represents the culmination of a year and half of work because someone once said to me, "If it has to be, it is up to me."

Back in the fall of 2013, I found out that Colorado's autism insurance mandate was changing.  As a result of those changes, Craig (my son) was going to lose the majority of his ABA therapy hours.  For those who are unaware, medically necessary levels of ABA therapy give children with autism the chance to gain the skills necessary to live an independent life.  So, accepting this loss of service just wasn't an option.

To do something about it, I started calling people.  I called clinics, parents, advocacy organizations, my state senator....basically anyone and everyone who would listen.

This was a little difficult as it's hard to get people excited about pretty dry DOI Rulemaking process 4-2-47.  In fact, in a recent poll (that I made up), invitations to DOI hearings ranked more effective at putting people to sleep than Bob Ross:
Thankfully, there are advocacy organizations out there, like Autism Speaks, that, like myself, happen to find the finer points of mental health parity fascinating.  These groups came together to form a collaborative effort, but the work didn't stop there.

In fact, I would describe the last 18 months as a camel would describe crossing the Sahara Desert, "Easier said than done."  Besides coordinating efforts between organizations, I....

- Generated more CORA requests than I care to admit
- Made thousands of phone calls (we actually had to change our cell phone plan since I kept exceeding our limit)
- Sent endless emails
- Sat on dozens of conference calls
- Attend meetings
- Reviewed previous hearing comments
- Testified at 3 committee meetings
- Made countless trips to Denver
- And enjoyed endless amounts of Diet Cherry Coke and exercise to handle the stress

However, I can honestly say that all that work was fun.  I really did enjoy analyzing DOI bulletin B-4.71, carrying around copies of Colorado statues with me at all time, and making charts of various Senate/House committees.

So, what did I get for all that work?
- A pen used to sign SB15-015
- The opportunity to meet the Governor
- The label of being "appropriately persistent" from my state senator

Perhaps most importantly, I'm now walking proof that one person, when paired with assistance from advocacy organizations, really can make a difference.  It's been an awesome 18 months.

Friday, January 23, 2015

Why I've been so busy

It's no secret that I've been rather busy the last few months, but sometimes it's hard for me to explain to friends and family EXACTLY what takes up all of my free here's the short (yep, the short) story...

For the past year and a half, I've been working with various advocacy organizations, stakeholders, and lawmakers to bring Colorado's autism insurance mandate into compliance with federal law.  It might sound droll, but doing so will give children with autism access to medically necessary levels of treatment.

If you find yourself thinking, Well, why is that so important?, just take a look at your prescription bottle the next time your doctor gives you antibiotics; that prescribed dose is what's going to help your body fight off the infection.  The same is true for children with autism: their treatment levels need to be at a certain level to be effective.  However, they aren't "fighting an infection," but rather gaining the skills necessary to live independent lives.

So, this year and a half of work has lead to the creation of SB 15-015.  For those who don't read legalese, this means senate bill #15 in the year 2015.

Despite so much work behind me, there's actually more sitting just right before me.  After all, I want to ensure that the last year and a half of work leads to a passed bill.  So now, my days are spent...

1. Answering emails
From the second Craig wakes us up at 5am, to the minute my head hits the pillow, I'm constantly answering emails.  These emails talk about strategies, upcoming meetings, possible concerns, coordinating efforts, etc.  As a result, my phone is ALWAYS almost out of battery.

2. Keeping track of amendments
I never imagined that so much of my time would be spent talking about amending proposed amendments to our amendments (which are actually themselves amending other amendments), but that's how the cards fell.  Last week I spent my entire Thursday trying to find out where a comma needed to be placed and...those standing up should probably sit down... I HAD FUN DOING IT!

3. Talking to legislators
I can now say I'm amazed that a bill EVER becomes a law.  Lawmakers are overtaken with a swarm of fact sheets, emails, phone calls, and office visitors from the second the legislative session starts.  So, it becomes necessary to compete with all that buzz to help lawmakers see why YOUR bill is important enough to vote for.  This last Monday, I drove down with a friend from The Arc of Larimer County to take HHS Committee members a drawing that Craig made of a "man with armpits" and talk about why SB 15-015 is so vital.  I'm sure that there will be many more trips like this over the next few weeks.
Craig's "man with armpits" made its way into the HHS Committee Hearing
 4. Attending Meetings
There are meetings to plan for meetings, meeting to talk after meetings, meetings think about future meetings, and the actual meetings themselves.  Right now, I'm working to plan a meeting to decide what meetings need to happen before the BLT hearing (which sadly doesn't serve tasty sandwiches...but is another meeting).
Here I am testifying at a HHS Committee Meeting
5. Asking others to do the same
Remember in point #3 when I mentioned how overtaken legislators are with emails, phone calls, and fact sheets?  Part of cutting through that mess is making sure that other people are calling too.  After all, a lawmaker hearing a staff member say, While you were eating at BLT at the BLT hearing, you got this fact sheet about SB 15-015, is always beat out by, While you were out eating a BLT at the BLT hearing, you got a fact sheet about SB 15-015, 3 people stopped by to ask you to vote for SB 15-015, 12 people called asking you to vote for SB 15-015, and 30 people emailed asking you to vote for SB 15-015.  I think it's time you consider voting for SB 15-015!  You see, when stuff like that happens, SB 15-015 passes the Senate HHS Committee with a UNANIMOUS vote!  After SB 15-015 passes its first committee with a unanimous vote, I feel like this:

Friday, January 9, 2015

The early bird gets the....raccoon?

Craig has a creepily accurate internal clock: he wakes up by 5am.....every....SINGLE.....DAY. 

Yep, it doesn't matter if he fell asleep at 6pm, 9pm, or midnight, Craig is always up and ready to go at or before 5am without fail.

While most parents cringe at this idea, it does mean that Bob and I don't need an alarm clock, we're up early enough to beat crowds at Walmart, and we get to view wildlife exhibiting urban behaviors.

For example, just this morning we were fortunate enough to see a raccoon eagerly eating the trash behind a closed restaurant:
So, just think of all the things you're missing by getting to sleep in.  Now, who's jealous of who?

Thursday, December 25, 2014

Merry Christmas To Us!

Merry Christmas from The Brown Family!
Anyone who knows our family well, knows that we're probably just a little bit odd.  However, we try to have a normal Christmas morning in our house.....

After all, we open presents......
 .....and we can appreciate the irony of actually being happy with the socks we got as a gift
....but then we realize how nerdy Bob and I are since most of our gifts to one another had a theme....
....and we diverge just a little bit more after I scream with delight when my dad gives me the ENTIRE SERIES (all 300 episodes) of a public TV show targeted to old men....
 ....but we probably hit a new low this year when, as we were skyping with my family, Craig trapped all three of us in his room after he broke his door knob with the door closed.....(I still don't know how he managed to break it....doorknobs are carefully designed NOT to malfunction....yet there we were....stuck).

Luckily, I'm so odd that I've planned for contingencies like this, and I already had a hammer stashed in his room, allowing us to take the door off by it's hinges and escape from our holiday prison.
Here I am taking Craig's door knob off with a screw driver.
So, if you didn't get what you wanted this year, at least be grateful that your ENTIRE FAMILY didn't get stuck in your child's room as your parents laughed their head off sitting comfortably 511 miles away.

Sunday, November 30, 2014

When you give a kid a camera

Last year for an early Christmas present, my dad gave Craig a camera.  So, for the last year I've learned that not only do kids say the darndest things, they also photograph the darndest things

....and in the case of Craig, he photographs them so close you generally can't tell what they are....(I haven't edited any of these)
This is the trunk of our car....
This is one of Craig's favorite cars.... 
Our super-wiggly child also finds it hard to hold still between the time he pushes the button and the camera's shutter closes (which is probably less than 1 second). 
This is a picture of Craig's car collection.
...and here's what Craig's car collection looks like when the photographer is able to hold still.  Ironically enough, Craig is taking a picture of me taking a picture of him.
Every once in a while, however, Craig stands far enough away from the subject and holds still long enough to get a pretty decent picture, and he just keeps getting better.
   It's hard to tell, but this is my Halloween costume...I'm not quite bold enough to rock a fauxhawk every day.
What's really humorous about Craig's camera, however, isn't the resulting photos; it's that that it comes with video games.  I don't know why the manufacture thought that a digital camera wouldn't hold a child's attention long enough for it to count as fun, but they threw the extras in there anyway.  Oddly enough, our friends' kids are so distracted by the video games, that they can't even take pictures with the camera!

Friday, September 19, 2014

How I Spend My Time

When people find out that I have a son with autism, 90% of the time I'm asked the two following questions:

1 - "Did you vaccinate him?"  Of course what they are really asking is, "Did vaccines give your son autism?"  This is an easy one: no they did not and there is no scientific evidence tying autism to vaccines.  


2 - "What do your days look like?"

I've always been baffled at how to answer this simply because, well, I have no idea what a "normal" day looks like to parents of children without special needs.  So, when people ask me, "What does your day look like?" I stumble.

To help solve this problem, I made some graphs (because that's the kind of person I am)....

Since about June of 2012, my days have looked like this....

Which so much of our time devoted to therapy, the therapists really become part of our lives; they've been to birthdays, grocery shopping, trips to the park, and are frequently mistaken for my significant other.  In fact, I've had more than one neighbor awkwardly inquire about the "guy" I was out with all over the place; I'm not totally sure they believed me when I said he was a therapist...

However, recently Craig's therapy has been winding down, and this is medically appropriate; after all, he's catching up.  So, now with only 6 hours of therapy a week (down from the 27+ hours at it's height), our days look a little more like this:
So, the other day I found myself sitting at home thinking, "What am I going to do with Craig and all this extra time?" and at that second it FINALLY dawned on me that's why there's literally THOUSANDS if not MILLIONS of Pinterest Boards, websites, books, and discussion forms going over what parents can do with kids all day long.

It's a little embarrassing, but up until a few weeks ago, when Craig's schedule changed, I honestly had always wondered why moms found it hard to fill up a day.

Thursday, September 4, 2014

Beer and Bikes

Our family has lived in Fort Collins for a little over a year now, but we knew on the first day of that first visit when Bob came out for his job interview that there are two main things that make Fort Collins...well...Fort Collins: Beer and Bikes.

The little "tourism" book that every hotel room has contained basically page after page of one activity for visitors to FoCo (yep, that's how we abbreviate it): beer and bike tours.  It's a little odd considering that you can still get a DUI on a bike (at least I'm assuming you can since apparently you can get a DUI on a horse...I've never actually taken the time to look it up).

For those who don't know, Fort Collins is the undisputed beer capital of Colorado.

It's also one of the most bike friendly towns in America...which also means that a vast majority of our bike racks look this this.
However, it's a little known fact that Fort Collins was an inspiration for Disneyland's Main Street USA.  Considering how much time he spends criticizing how "terrible" Colorado is now, I'm guessing that Governor Chris Christie isn't privy to this information.  I'm also guessing, that if he could re-title this post it would be "Beer, Bikes, and Bongs."

Yes, Colorado recently "entered a higher state" (which is misreported on Wikipedia as being Colorado's slogan...the slogan is actually "It's our nature").  However, the main problem has only been debates over who gets the tax dollars from retail sales.  Other than squabbling over who gets the extra money, life has pretty much continued on as usual.

...and "life as usual" in Fort Collins, as I discovered over the past 466 days, is....

1 - Severe weather
Yeah, I thought I knew what this was after going through all those microbursts in Utah (during one of which my neighbor's house was struck by lightening...which gave the kid an AWESOME excuse for not having his homework finished the next day in school...only problem was he wasn't the "trust worthy" type, so the teacher didn't believe him).  Yeah...I didn't....I had NO IDEA what severe weather was.
That isn't's hail...after a storm in mid-June
My concerns weren't helped when on our first Sunday at church, someone casually mentioned the "Windsor tornado."  I gave her a puzzled look and she said, "Oh!  Don't worry!  They are much less common here."  I would have preferred her to say, "I'm kidding!  You didn't just unknowingly move to the edge of tornado alley!"

At I watched this storm unfold, I was very grateful that Bob's phone receives severe weather alerts...I was just hoping that the tornado warning would go out before cell phone towers were blown down.
2 - People here forget flooding pretty easily
Yeah, this isn't due to too many reefers.   This forgetfulness extends back hundreds of years.  In September 2013 (ironically enough, over Friday the 13th), Colorado made national news when a flood of biblical proportions hit NoCo (how we abbreviate Northern Colorado).  Yet, you talk to anyone and they will say, "It never floods here!" Obviously they are forgetting the 1864 flood, the 1976 flood, and the 1997 flood (and more).  Yep, despite the fact that "it never floods here" we still bought flood insurance.

3 - Apparently beer and bikes are a good mix
Despite being the beer capital of the state and Colorado is arguably the beer capital of the nation, Fort Collins is consistently rated the safest city in America to drive in.  Honestly, I was expecting a lot more DUI's.  I guess CSU students are either too poor to get drunk or too poor to afford cars.  However, they aren't too poor to dress up in silly costumes for Tour De Fat (Fort Collins's annual celebration of beer and bikes).

And despite the fact that we don't drink, we were too lazy to ride our bikes, and the most crazy thing I could come up with was a fo-hawk (which I think beats Bob's "costume"), we still went Tour De Fat too.