Wednesday, March 12, 2014

Chelsea Timothy and the Developmental Disabilities Month

When I first married my good wife, there was a young girl in our extended family, named Chelsea. She clearly had a lot of disabilities, and things were very difficult for her family (my brother- and sister-in-law). Even to this day, I’m not fully aware of just what her full list of diagnosis are, but she’s missing a part of chromosome 18. As a result, she’s very short, and her spine is misaligned. She’s had many issues in her cognitive development, and she struggles with her fine and gross motor skills.

When she was very young, she had surgery to repair her cleft palate, and after that she found she could communicate. I saw her go from a shy and isolated soul to a happy and chatty little girl in a matter of weeks.  Even though she still speaks very slow and slurred, the fact that she was able to begin speaking opened up her world.

I’ve watched her grow up and graduate from school. She’s had various jobs, including shampooer at a hair salon. Her jobs are difficult, because she tires easily, but her coworkers have always commented on her diligence.

In the early years, nobody expected her to live to be a teenager. Then they said she might not live to see 20. Now she’s 28. Over the years, she has brought much joy to our family.

I was a little surprised to see her profiled on the news, but not at all surprised to see what they said about her.  Check it out.



Here's the link to the page of the original report.

Having said all this wonderful stuff about her, it’s time for me to get up on my soapbox again, especially as the state legislature is busy determining the fates of many of us like Jacob and Chelsea.  DSPD (the Division of Services for People with Disabilities) set Chelsea up with her current job.  Chelsea is a productive, helpful member of society. Yes, she requires services and aid, but she gives, too, in very practical ways.

Many of Utah’s disabled are contributing in many ways, many practical ways.  It’s vital that DSPD get the funding it needs to continue to help the state’s disabled population be able to serve and function.


Sunday, March 2, 2014

The Disabled and The Mission

I read this blog post (now quite dated) with real interest.  My interest is obvious, as I have often wondered what would happen to Jake when the time came for his mission.  

I had assumed that there might be some sort of service mission he could participate in. This says that there might be some kind of hope for the many, many young men and women who have some kind of disability or mental illness.

I’m very excited by some of the things I’m seeing more and more in the organization of the Church.  I’m seeing much more openness and compassion being shown for the disabled. I'm excited because a mission is one of the primary goals of the youth in the Church. From the time we're babies, and through primary and scouts, we're primed to go on our mission.

Now, I realize that a mission is not required for salvation and exaltation. But I also know just how much my mission changed me and helped me grow to maturity. I want as much of that as possible for my boys, and for Jacob in particular. Any way that it can be done or adapted is fine with me!

Wednesday, February 26, 2014

Obamacare (The ACA) and Facebook

I finally finished getting set up with my own health insurance.

This is an exciting change for me, because as recently as a few short months ago, that would have been impossible.  Between my weight, Jodi’s Diabetes, and Jacob’s multiple health issues, our family would have been uninsurable.  That meant that I spent literally years in jobs that made me miserable simply because I had to have insurance.  Since our family's medical bills are astronomical, without insurance, we would have been homeless in a matter of a month or two.

Well, since, as of January, I’ve been unemployed, and since my wife’s work doesn’t offer her insurance, we went to healthcare.gov and looked for plans.  We found one that would give all four of us good coverage, for just about 2/3 what I would have had to pay using COBRA and my previous work’s insurance.

That was pretty exciting, too.

To be fair, we had a heck of a time setting it up.  Twice we tried to do it ourselves at the website, and three times over the phone.  The system crashed on our application each time.  But with persistence, over the course of about 2 weeks, it all came together.

Now, there’s a lot of politicizing going on around the ACA and the Insurance exchange.  Frankly, if the tech had been worked out before it had been rolled out, it would have been a slam dunk for the Democrats.  But, they fumbled, and fumbled big.  They were about to score a touchdown, and they fumbled it back across the 50 yard line.

On Facebook, I’ve noticed a lot of commentary going on.  Many of my friends have posted their experiences with Obamacare and the ACA exchange website.  I’ve noticed an interesting trend.  Those who post about having troubles, or not being able to find less expensive insurance tend to be conservatives.  On the other hand, those that post about their successes tend to be more left-leaning.

I wondered why this was.  Rather than mire myself in conspiracy theories or political mudslinging, I think I’ve realized why it is.  If a liberal or Democrat, who has spent the last two years promoting and defending the ACA, has troubles or can’t find good insurance, they’re not as likely to jump on facebook and say, “Wellllll, I was wrong, it sucks.”  Conversely, if a conservative who has spent as much effort vilifying and berating the ACA as socialism were to go and find good, inexpensive coverage, they’d not likely say, “Oops, I guess it’s a good thing, after all.”  On the other hand, if someone's experience with the Obamacare site confirms their already-held beliefs, left or right, that's what's going to get posted.

The whole law is so complex that I don’t think anyone can truly foresee all of the intended and unintended consequences, and it probably won’t sort out for years to come.  So, in the end, will we say it’s a good thing or a bad thing?

I don’t know.

But, for the first time since I became Jacob’s father, I have insurance that I can afford that’s not tied to my job.  That’s huge. So far, it’s workin’ for me.


Thursday, February 13, 2014

Support in the Utah State Legislature

The state legislature is in session, and, as always, my life gets really panicky this time of year.  Will they fund the programs that help keep Jacob alive?  It's always touch-and-go.  Jake and I went up last week and testified, and it was great.  Jake did a good job, as always.  We'll be up there again next Thursday.

I just had a chat exchange with our direct representative regarding the funding for special ed in the schools.  It's critical to us that the programs get funded, because that's what makes Jacob's school experiences successful. They have to pay for aides, equipment, occupational and physical therapists and a lot of other things.  Here's our chat exchange:

Me: As an Eagle Mountain resident and a parent of a child with special needs, it's very important to me that the special education programs get funded.  It's often difficult to secure and maintain good in-school aids and assistants when the pay scale is so low, and it's without benefits.  It's important to us that the School Districts get the proper funding to provide good services to our son!  Thanks for all you do!

Rep Lifferth: Were have voted do increase wpu by 2.5% as well as funding all new growth.  There is also a substantial increase in funding for special needs children. Thanks for sharing your concerns. Don't hesitate to do so on any state issue.

Me: Thanks so much for voting so, and for the update!  Nice to have a responsive rep!

Rep Lifferth: That's what I do

So, my hat's off to Representative Lifferth.  It's good to know that things, for the moment, are moving forward.  Now, this is just the appropriations committee.  Their decisions still get fed into the overall Executive Appropriations, and the final budget bill.  It's not final.  Still, It's good to have things working in the early stages, anyway.

Monday, January 6, 2014

Stinky!

http://www.huffingtonpost.com/ellen-stumbo/what-my-mother-knew-the-moment-she-me
t-my-daughter_b_4115318.html

I read this article with real interest. I've heard a lot of similar stories of people whose preconcieved notions about handicaps have been shattered or drastically shifted by actually meeting someone with a disability.

I have to confess that I had to face that same paradigm shift as well. Until I'd met my niece Chelsea, I'd never really dealt with anyone with a handicap. Then, Jacob was born.

In the early years of life, we didn't know the full extent of Jake's handicaps. The Cystic Fibrosis was diagnosed pretty early, within a month or two of birth. Soon after, we began to suspect there were other developmental disabilities, and at some point it was suggested that he had Cerebral Palsy as well. It got to the point that I wanted to stop taking him to the doctor because every time he went he came home with a new diagnosis. And with each diagnosis came more treatment regimens and more issues to remember. It was very overwhelming.

When the final dignosis of CP was confirmed, the prognisis was much less clear. Cerebral Palsy impacts every patient in very different ways. Some are verbal, some are not. Some are more motile, others are not. We were told that the only way to know how it would effect Jacob would be to wait and see. I didn't like that. I wanted to know. Uncertainty wasn't my friend.

And, I confess, that I struggled with the possibility of having a son that couldn't communicate. I would love Jacob, no matter what. But it would be much harder on me to think that he wouldn't be able to learn, speak, and be able to fully interact with me and the world. That was my own prejudice.

I gained hope as he began to mimic words and parrot them back to us. It happened a bit slower than most kids, but not really. I was still very nervous, because I wasn't seeing any evidence that he was understanding any words, just making the sounds.

I can clearly remember one morning. I woke up because he was fussing in his bed. He was probably 1 1/2 or 2 years old at the time, but I'm not sure of that. I grumbled out of my bed, and shambled over to his crib bed. I looked over the edge, and he instantly smiled. That got me smiling, and I said, in my best baby-talk voice, "What are you fussing about?"

Through his grin he said, "Stinky!"

Suddenly all of my fears melted. I knew that whatever came, and whatever were his maladies and diagnosis, we'd be able to handle it all.

Now he's 14, going to school, reading books, playing minecraft, making youtube videos, sitting on councils for the Governor and testifying before the State Legislature. You never know...

Saturday, October 12, 2013

Jake on the Football Team

I know, that sounds kinda crazy, right? How on earth does a kid with Cerebral Palsy get on a football team? And how is it that a football game could make me want to tear up from time to time?

Those that know me know just how non-athletic I am. I enjoy watching a game here or there, if I'm with good friends. I know enough of the rules of most games to understand what's happening on the field (or the ice). I don't know about teams or strategies, or what players are doing well or badly this season.

About two months ago, we were approached by with an offer to have Jake be a part of a program that places special-needs kids with little league football teams of the same age. The idea is to give the special-needs kid some social interaction in a setting (like athletics) where he/she might not ordinarily have the opportunity, and to give the other kids the chance to get to know the special-needs world, too,

They call the special-needs kid the "twelfth man", and even though he doesn't go on-field during the game, he's treated like a team member. He has a helmet and jersey, a number, he gets in all the team time-outs and huddles, and even gets to call the pre-game toss. He cheers the team along.

Jake actually loves watching sports, so we instantly thought it would be a great match-up. I admit, I was a bit nervous. My own experience with being bullied by the Jr High school jocks left me feeling more than a little fearful.

I didn't need to fear. The whole team took to jake like he was their brother. At every game and event they're always excited to see him, and always trying to include him.

Today's game was no different in that respect. But today, the team won, and won big, after a 4-5 game losing streak. The coaches are great, too. They shout to the kids, but never yell at them, and they talk about determination and intensity of focus in the after game huddles. This is stuff I want Jake to learn, too.

One day, after a game, Jake said to me, with a huge smile, "Dad, I'm a jock,now!"

I said, "Dude, you play minecraft. You're still a geek, too!"

...but it's ok to be both, now.

Saturday, October 5, 2013

Elder Holland's Talk in LDS General Conference


There may be some readers out there who might not know much about my religious culture. Today is a very significant day in the annual life of a Mormon. Known as General Conference weekend, it's two days of meetings where the leaders of the overall church (not local leaders) speak to the whole body of the Church. It happens every October, and every April. It's a big deal because we believe that these leaders are called by revelation and lead the Church under inspiration. As such, what they say during each General Conference is something that all Mormons treat with a certain amout of respect, even if they occasionally disagree with the authorities.

Today, one of the talks was given by an Apostle named Jeffery R Holland. He spoke passionately and directly about mental illness in all its forms, but depression in particular. He spoke about the need for those that suffer from it to not lose hope, but to pray and to draw on the strength of the Holy Spirit. In a slight departure from our common culture, he also spoke about the need for those that suffer to seek out competent and compassionate professional treatment.

Elder Holland also talked about how important it was for those of us that see and interact with sufferers to treat all with kindness and compassion and to not be judgemental.

He spoke of the need for caregivers to be aware that they must also care for themselves as the so selflessly give to the sufferers. He spoke of the need to be patient and to maintain hope for eventual recovery.

This may seem like old hat to many, but to hear those words spoken with such force and power from the pulpit of the Conference Center, by one in the highest ranks of the Church was liberating.

At one point, Elder Holland reminded us all of the core Mormon belief in a unversal and complete resurrection, where all will rise, restored with a full and glorified body, free of troubles and disabilities. And, yes, he actually used the word "Disabilities".

As he talked about that moment, a huge weight was lifted from me, not just for Jacob, but for myself as well. I had known this for my whole life, but it just didn't sink in like it did today.

His words brought me so much comfort. How many years I've struggled to maintain my own sanity in the chaos of my own life and my own caregiving for Jacob. How often I wondered if I were actually clinically mentally ill. I've been in counseling many times and I've been on medicine before. How wonderful it was to hear it from an Apostle that the struggle didn't mean I was weak or unrighteous (at least, not any moreso than usual). I could hope to carry on and find Joy!

Be sure to visit Mark's other blogs: Mark's Black Pot, and Mo' Boy