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

Saturday, May 4, 2013

Jacob Back in the Hospital, and Not Dying

Is it me, or do the doctors at the hospital look like teenagers?

I’m not talking about the volunteers or the techs/nurse’s assistants.  I keep meeting these people who look like they should be taking highschool classes and going to seminary dances, and then they say things like, “Hi, I’m the resident!” or “Hello, I’m the intern”.

I’m certainly not disparaging them or saying they’re doing a bad job.  They’re great.  But it must be saying something about how old I’m getting.

Playing Minecraft with his bro
Anyway, this time it seems like he’s had more issues with his guts being all plugged up, and not so much trouble with his lungs.  He’s been pretty cheerful through the whole experience, except for the day he had to get the catheter and the enema.  I’m glad I wasn’t up here with him when that happened.  Yeesh.

The other day, when I came up to visit, the call came out over the intercom for a Mormon Elder, which I am.  That meant that someone needed an Administration for a Blessing.  I went and assisted (it takes two), and as I met the family, and listened to the prayer being offered, I realized that these parents were in fear for the life of their child.

We come up to the hospital a lot.  Appointments, clinics, a clean-out once or twice a year, even an occasional surgical procedure, etc.  These things are important, and very serious. But it has been a very, very long time since I have felt total fear that my child would die.

I remember one time, when we were in for a cleanout, he had a bad fever, and he went into a full-on grand mal seizure.  They gave him anti-seizure medicine, and he stopped breathing.  They had to get the breathing bag on him three times.  Alarms were going off and the staff got real focused and serious for about a half hour until he got stabilized.  I was terrified.

And, of course, when he was born, two months early, and whisked from the first hospital up to Primary Children’s the first time (on Life-flight, no less), with a ruptured intestine.  We were scared for his life, then, too.

In the special-medical-needs world, we often find ourselves in situations where, at least on the inside, we look at a family and say, “I’m sure glad I’m not in their place”.  We often don’t realize that they’re saying the same thing about us.  But this time made me remember times that were scarier, and made me more grateful that these hospital stays, while being important and serious, are not because he’s at death’s door.

At least not this time.

Thursday, April 11, 2013

Primary Focus

Jodi and I recently had a remarkable opportunity as members of the Church of Jesus Christ of Latter-Day Saints.  We were contacted to participate in a focus group with the general presidency of the Primary on how to better serve children with disabilities, handicaps, and special needs.

For you non-mormons, let me clarify.  In the the Mormon church, the “Primary” is the auxiliary that helps teach the children’s classes during the time of the Sunday meetings when the adults and the youth (teenagers) have their own Sunday School and other classes. I went through it myself as a child, and at various times in my adult life, I’ve been a primary class teacher.

So, this was an initiative by the “General President” of the Primary.  That means the lady in the office building in Salt Lake who is in charge of the Primary program over the whole world.  That’s right....  Her calling is to be responsible for the religious education of every Mormon child in the world.  It’s a big job.  She has been known to speak from time to time in the Mormon Church’s General Conference, giving advice and inspiration to the world’s parents.

So, I was particularly touched to hear that she had contacted a number of parents of special needs children, and some general primary leaders from some individual wards, to participate in a focus group so they could learn how to better serve the special needs children in the world’s congregations.

It was a wonderful experience to be there with her and her two counselors, and to share our experiences.  My only frustration with it was that our session only lasted an hour.

There were many parents there that shared wonderful and frustrating experiences.  Much of our own experiences in church with Jacob have been wonderful.  We actually have a very supportive ward.  Some teachers and leaders have been better than others, of course, but by and large, it’s been great.  They’ve really tried to include Jake as best they can.

Apparently, the Primary Presidency is working on an addition to the Church website, in the Primary wing, to aid people in working with children with handicaps, disabilities, and other special health-care needs, and their families.  We were asked how to make it more useful, and more accessible.  In the process, I also learned that there are a lot of resources available to wards and families at the main church website, at  I didn’t know, for example, that a ward or stake can actually call a disability specialist as part of their ward or stake roster.

The biggest contribution that a local ward can make to a child’s well-being is to talk with the parent and to spend time getting to know the child.  Every child is different, and a handicapped or special needs child moreso.  What works with one autistic child will not work with another, even though they both carry the same diagnosis.  Cerebral Palsy looks different in every child who has it, and with Cystic Fibrosis, like Jake has, it gets even more complicated.

In the end, I was just left with an overwhelming feeling of gratitude that the Church, at such a high level, recognizes the needs of families like ours, and kids like Jake, and is trying to serve them.  Really, the best way for them to serve us is more on a local level, but often local leaders are not as aware of what to do.  Often top-down instructions and resources are a great way to go.

It was also kinda funny to learn that the way the ladies talk in conference is also how they talk in real life!

Saturday, February 9, 2013

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?”

Wednesday, February 6, 2013

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.

Saturday, January 26, 2013

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.