Jake and the Utah State Legislature, Part II

Here’s a clip of Jacob’s testimony before the Utah State Legislature’s Social Services Appropriations Subcommittee:



So, there’s more to the story, now:

Thursday morning, I got a call from Jodi saying that she’d just been told that on KSL talk radio, Doug Wright had played the recording of Jacob’s testimony before the Utah State Legislature and commented on it.  That was pretty exciting, because it showed me immediately what I’d already known, that Jake’s words were touching people.

Right away, I called KSL and said “I’m Jacob’s father and I was there when he testified!” The screener taking my call, got really excited and said, “Let me call you back in about an hour and we might be able to get you on the air with Doug.”

I waited, and they called back, and we did, in fact get me on the air.  It was fun and Doug was a very insightful interviewer.  Hopefully, all of that publicity will help more people to be aware of the financial plight of the disabled.

One thing I noticed at the Utah State Legislature committee meeting and I tried to bring out in the interview was this:  A lot of the testimony shared that day was by disabled adults talking about how the services that they get from the state government have helped them to become independent, and to get productive, real employment, in the non-disabled world.  One guy I met there was very friendly and personable, and he and I got to talking about wheelchairs, because his is the same brand as Jacobs.  When he testified, he talked about being able to go to work as a software engineer.

Another guy has a degree and works in the Disability Law Center.  A lady there told about her job in an office in Salt Lake.

My point is that this is not a collection of takers and leeches.  These are now productive, employed, tax-paying adults.  Our great society has invested in them, and now they are contributing to society in meaningful, practical ways.

Someday, Jacob will be out in the workforce.  I can already see ways that he’ll be able to contribute, and he’s looking forward to a long and productive life.

As Jacob says, “What am I worth?”

Jacob and the Utah State Legislature

Every year, when the Utah state legislature meets, I lose sleep.  It has a lot to do with what might happen if the programs that pay for Jacob's medical care get cut or removed.  Every year, it seems, they want to slash the budgets.

I know that it's tough.  Everyone wants their particular slice of the pie, and the poor legislators have to look at the big picture and decide who gets what.  I'm not being sarcastic when I say, "poor legislators", either.  I mean, really, that's gotta be a tough job.  Whatever you decide, someone will be mad at you.

But that's not really what I wanted to write about today.

I wanted to write about Jacob.  Every year, we try and get him signed up so that he can testify before the Social Services Appropriations Committee.  He's been doing it for several years, now.  Last year, unfortunately, we didn't get him up to the Capitol in time, but this year, I did.  He and I both testified.

He and I were second and third on the list, respectively.  When it was his turn, he was firm, confident and spoke clearly.  He talked about his illnesses, and conditions.  He asked the legislators to think of him, when making the budget cuts, and ask, "How much am I worth?  How much are my friends worth?  How much is my family worth?" Then he flashed his Jakie smile and was done.  The chairwoman of the committee thanked him very much for being there and sharing his point of view.

How many 13 year-olds can stand up in front of 20+ powerful adults and address them with calm and confidence?

Then I stood up and did my two minutes of grown-up blah-blah-bah.  And then they were on to other adults.  There were some great stories told, as some of them talked about how State programs had helped them get through school and find meaningful work and independence.  There were disability professionals with statistics, charts, and graphs.  I'm just very proud to have Jacob help them to see the very human side of the budget decisions.

Fairness, Cystic Fibrosis, and Cerebral Palsy

So, Jake’s been sick a lot this week.  It’s been both bad and not so bad, depending on the day.  He’s been fighting with diarrhea several days, and even though his stools have been pretty solid today, he’s still had a lot of GI wooziness.

With Jake having Cystic Fibrosis, we have to take all of this very seriously, just like we do when he gets bugs in his lungs.  It can be pretty bad for him if he catches something fierce, even in his guts.

So, he’s staying home from church tomorrow.  This is kinda frustrating, because it’s a big deal for his older brother.  Brendon gets to speak in church.  In Mormon churches, members of the congregations preach the “sermons” each sunday, though we call it “giving a talk”.  Often they’ll ask the youth of the congregation to do a short one before the adults speak.  It’s really good for them, and it’s a big deal for a teenager to do.

But, Jake and one of us of the parents will have to miss it.  It turns out that I get to be the lucky one to go, because I sing in the choir, and we’re also performing.

It’s kinda tough to split up the family activities for a day, but that’s what we’ve got to do.  Fortunately, Brendon understands, and hasn’t complained too much.  He does, however, sometimes gripe about other aspects of the inherent unfairness of Jacob’s condition.  Jake misses a lot of school, and Brendon would sure like to do that.  Jake, because of his Cerebral Palsy, can’t do any household chores, so more of that falls to Brendon.

We try, as parents, to find some kind of balance, for both of them.  But, really, there isn’t a balance.  It just IS, and we all have to deal with it in our own way.

More Days in the Life with Cerebral Palsy

So, a lot of changes have happened in the December, and many of the focus around Jacob turning 12.  In our church, 12 is a big deal, especially for a young boy.  For either gender, it means coming out of the kids program, called “Primary” and into the youth program, called “Young Men” or “Young Women”.  They do a lot of activities, both separated and together, on Tuesday nights in our ward.

So, Jacob went to his first youth meeting last night. 

It’s hard to me to think of him as a pre-teen.  In my eyes, he’s still a cute little kid.  Of course, when I’m hefting him in and out of bed, or into his wheelchair, I’m painfully reminded every time that he’s not a baby.  But he’s still got that pudgy face, and that cute voice.  Both he and his brother are starting to outgrow the Disney Channel.  I’m actually quite happy about that.  There’s only so much Selena Gomez that a grown-up can stomach.

Another big part of turning 12 for a young Mormon boy is getting the Aaronic Priesthood.  He’ll become what’s called a “Deacon” and have duties to assist in the church.  It’s a rite of passage comparable to becoming an Altar Boy or a Bar Mitzvah.

One of those Aaronic Priesthood duties will be to pass the bread and water at the Sacrament in the meetings each week.  His cerebral palsy will require some adaptations.   We’ll be installing a desk/tray on his wheelchair so that he can carry the water and bread trays to the rows of pews.  His youth leaders had all of the boys do a practice run with him last night, so they’re all better prepared to know what to expect.  I really appreciate the extra effort his leaders and putting in to help him fit in.  I think it will be the first time in my life that I will ever have seen a person in a wheelchair pass the sacrament.

With Cerebral Palsy there is much that Jacob struggles with, and much that he just can’t do.  I’m excited to see that he keeps trying to figure out what he can do.

The Hero Returns

Jacob is back from the hospital now, after having his Cystic Fibrosis cleanout.  It ended up not being quite a full two weeks this time, which was nice.

Jake is growing up.  He’s a few days under 12, now.  During this hospital stay, he started to noticeably engage more in the talk with the staff.  In the recent past, he’s been involved in some opportunities to speak to the nurses, particularly the student nurses, and teach them how to better deal with children patients.  He told them all to talk more directly to him, as the patient, instead of just talking about him with the parents, while he’s in the room.  

I think that, this time around, that this experience has given him a lot more confidence in dealing with the nurses, the techs, and even with the doctors.

For example, when the Cystic Fibrosis pulmonologist was in, and they were talking about just how long to keep him in, he piped up and said that he wanted to do as much of the full cleanout as necessary, because he “didn’t want to have to come back in a few months!”  The decision was made.

A couple of days later, talking with the same doctors, they said he was well, and sounding clear in his lungs, and they asked him if he felt he could go home.  He was excited and said that he definitely wanted to.  They were including him in the decision making process.

He’s a sharp kid.

“To the Genius of Ayn Rand”

As a young high school kid, trying to learn to play the guitar, I remember reading those words on the back of a Rush album, 2112.  I loved the album, but at the time, I didn’t fully understand the sentiment.

Years later, as a young musical entrepreneur, I finally got a copy of “Atlas Shrugged”, and read it.  I found parts of it very inspiring.  The parts, in particular, that talked about diligence, hard work, vision, and self-reliance.

There were parts of the book that didn’t ring true.  Like the notion that people would sit, transfixed by their radios, as a man droned on for literally hours (chapters) about ecomonic theory.  In this day and age?  No way:  “Who the %$^* is John Galt?  Dude, what channel is ‘Jersey Shore’ on?”

Fast forward may years, and Ayn Rand has become a political figure again, galvanizing the new right right wing.  Meanwhile, I’ve become a father of a boy with multiple medical issues, Cystic Fibrosis and Cerebral Palsy among them.  I’m learning that when dealing with such issues, self-reliance simply isn’t an option.  The costs are too astronomical.

Then, today, I read that the poster-girl for the new libertarian right actually accepted Social Security and Medicaid (read here and here), my first reaction was a cynical, “Ha!  See?  It gets to us all eventually!” I read the articles, and many of the vicious comments.  She was slammed as a hypocrite, and as a phony.  Others defended their idol, claiming that because she paid into these systems by force, she was entitled to draw from them as well.

I felt saddened, more than anything.  Ayn Rand was a genius in her own way, in that she formed her ideas and shared them in a way that impacted the world.  I disagree with her vision, but I do admire her nonetheless.  At the end, I saw a picture of a woman who was confronted with the choice between practical reality and her ideals.  In “Atlas Shrugged” she was able to create her own world, a utopia where her theories worked perfectly.  But here in the real world, it doesn’t always happen that way.

Time at the Hospital

This last week and a half, Jake’s been up at the hospital, having his annual/semi-annual Cystic Fibrosis lung cleanout.  It started when he came in to have his sinuses cleaned out of growth and gunk, which had been causing cluster headaches last summer.  The headaches had faded, but the scans showed significant blockage, so they decided that it would be a good idea to clean it out anyway, and that it would probably prevent future instances of the headaches.

What I wanted to write about was our school principal, Mr Conley.  He brought his family up to visit Jacob, and to bring up a bunch of cards and letters from some of the classes at the school (including some beyond Jacob’s own class).

First of all, I think it’s cool that Mr Conley comes up and visits.  It’s cool that the other staff here at PCMC are surprised to see a school principal visiting a kid.  It’s also cool that we’re not surprised.  That’s just the kind of man he is.

Early in Jacob’s school life, we were in a different school district, and obviously at another school.  We started our relationship with them with an adversarial posture.  We went to the IEP meetings with the attitude that we were going to have to fight to get every service we were legally entitled to, and they were there with the attitude to fight to be forced to do as little as possible.  As you can guess, we didn’t get that far.

When we moved out to Eagle Mountain, we came to the school with an intentionally more cooperative attitude.  We were also fortunate that the people we were working with in the administration were also predisposed to a more cooperative attitude as well.  It was some pretty fertile ground to plant and grow a great working relationship.

Over the years that we’ve been out there, the few small disagreements we’ve had have been over things like how best to implement plans, rather than what services should be included.  The school has been proactive in their efforts and adaptations for Jake (Jake also has Cerebral Palsy, as well as Cystic Fibrosis, and is in a wheelchair full-time).

Maybe someday, I’ll blog about my IEP experiences, and more about how it works.