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.

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!

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!

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.