My Wife's Thoughts on Disabilities and Church

Last night, my dear wife wrote out an essay full of great thoughts on how to help families with special health care needs.  She's been having some technical problems sharing that on facebook, so I'm reprinting it here so it can have a permanent home address/URL.  Here it is:


I always worry about writing about things like this. It is near and dear to my heart. I worry what some might think, but my heart is absolutely breaking, and it has been for a little while now.

I am having more and more of my friends that are parents children with special needs that are deciding to take a break from their church services. The reason? They feel unaccepted. These friends are from the same religion as me, and from different religions. It seems to be happening everywhere.

We have always been blessed to be in wards that have been so supportive of my boys. When I hear these HORRIBLE experiences from my friends, I want to help them fight for the rights of their children, and I want to hold on to them, and tell them not to let others decide if they go to church or not... But then I can see exactly where they are. I know from personal experience that advocating for you child can be overwhelming and sometimes you just have no more to give. Again, my experience has been in different areas, such as schools or bureaucracies, not from our sunday church experience or the boys activities. We have been in great wards.

I don't know how to advocate for my friends to their local churches, because it could cause more problems for them. The only thing I can think to do is give some suggestions to people about how to work with families with special needs in your churches.

1. If you are not sure what to do with a person with special needs in your congregation, ask. You might be afraid that someone with physical needs might break if you touch them, or if they have behavior issues, that they may have a melt down. Just ask the parents and family what things they do in their own home to make the person at ease. Trust that the parent knows their child.

You may want to say, “So, I would like to learn more about your child. What does he/she like to do. What makes them really happy? What frightens them? When they are having a difficult time, what makes them feel less stressed? Are there things that you think could help us work with your child so they have the most enjoyable time?”

Parents want to do what is best for their kids. A lot of times someone in charge of a program at church might think that the answer is to separate the child with special needs from all the others. If a family thought this would be the best solution, they probably would not bring the child to church to begin with. Find ways to have the children in the same classrooms as other kids. For example, you can make a smaller class, and have more teachers for that particular class. Keeping the kids together is a great way for the other kids to learn that just because someone is different does not mean they don't have a lot to give.

When my little guy, who is in a wheelchair, was very young, we had an amazing primary presidency in that ward (primary in the LDS church, is the auxiliary organization that manages the children’s sunday classes). When he was starting to go to bigger kid classes, she invited every teacher in primary, and every parent with a child that had some special needs, and asked each one of us as parents to explain more about our kids, and to tell her what worked, what didn't etc. It was an amazing night for all those that came.

2. Never, and I mean never, ever, never, tell a person that they are unwelcome at church, and that they are being selfish to bring their child to church. Yes, this has happened to many. I have seen little kids in church do unexpected things. They have sworn in church, they have blurt something out, they have had a melt down, etc. And usually what happens is that we look at them, get a little chuckle, and watch the parent turn red. Usually that makes you smile a little more. We know the child is innocent. But when an older person does this, we think they should know better. But some of our kids, some of whom are even adults, may only have the cognitive ability to think as a child.

I can guarantee that the parents of children with special needs need to partake of the spirit in that meeting more than anyone in that building. They deal with this situation 24 hours a day, and many of those days are without much sleep, because of the care for their child. They need to take of the sacrament, talk to other supportive adults, and have a chance to renew the soul. Never take that away from a family.

Remember Matthew 24: 40: “And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.”

Would you really treat Jesus or our Heavenly Father in such a way as telling them they were not welcome? In a church?

Also, remember Matthew 19:14, which says, “But Jesus said, Suffer little children, and forbid them not, to come unto me: for of such is the kingdom of heaven.”

3 If you are in a position in your church working with young adults, remember the special needs children
when planning activities. If you are going hiking for a scout activity, talk to the parent and explain that you are doing this activity and you want to know how you can include the youth with special needs. Do you need to take a couple of extra people to walk with a child that runs? My son is in a power chair, but we have taken a stroller and hiked with him to the arches in Moab. We did have to carry him a ways with a couple of us, but we did it, and his smile was far greater next to that arch then anyone else that had climbed to it, unless they were smiling because of his smile.

O we may have asked if there might be some other boys go for whom hiking is difficult, and those boys wait at the bottom with our boy and play games. Then when they all come down, they do a testimony meeting or some other fun activity.

If you are going to camp with the youth, don't assume just because someone has a special need, that the youth will not be able to go, or that it would just be easier for them to stay home. As a parent, there are many activities that we want to do as a family that frankly sounds easier to just stay home. But we decided when he was a baby that we would not lessen our life, that as long as our boy was alive, we were going to let him live, and be a part of that life. That is important to us, and our son loves the things we end up doing, even though I am usually ready for a nap afterwards.

This of possibilities. Don't say, “This won't work because....”, instead, say, “How are we going to make this work?”

Have the parents involved in the planning. I promise, we as parents do everything in our power to make sure our child is not hurt or put in a position that he could die, so if we think it is a good idea for them to be there, we know that it can be done. It usually means having more of a support team, having extra people there to help the one person. But as you feel the extra special spirit that comes from these kids, you will know it was all worth it. Allow yourself to feel this spirit.

If the other youth don't actively engage with the youth with special needs, be a example. Get them involved. Just saying, "Hi" because they are asked to doesn't count.

I have a great friend, she has a daughter that is non-verbal and went to girls camp. She was put onto a swing and she thought that was so fun. She laughed and laughed, which made all the young women in the stake laugh, and they all wanted a turn to push her as they all giggled and bonded.

4. And that will put me at my last point in this entry, as I have already overwhelmed most. But for those that are non-verbal, they most likely understand speech. Talk to them. They will get it. Don't just put an Ipad in front of them for 2 hours while they are supposed to be in class, watching Dora The Explorer. They could do that at home. They like to learn, they are able to learn. I had the most precisous girl in one of my primary classes. I will not forget the day that we were doing a play about Joseph Smith, when he was about to get his leg cut off because he was going to have to lose it. This little girl was non-verbal, but she made it known to me that she wanted to be his mother doing this. She walked up when I was asking about that part, these were all 6 year olds, and although she didn't say a word, she played the part and learned the story.

Teach them, just as you would someone that spoke the same way as you. You will learn that they have their own voice, it is different, but if you listen, truly listen, you will hear A LOT.

For my sweet friends that are struggling with this. I love you!!! I wish the best for you, and I hope you can find peace.

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.

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!

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.

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.

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...

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.

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

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.

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 http://disability.lds.org.  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!

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.