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.