One Sunday, when our 14-year-old son, Brian, attempted to sit through sacrament meeting, he lost control and began making squawking noises. He turned to us in anguish and said, “Do you think people know how hard it is for me to be here? Do they know how hard I try?”
Recently, members of our ward in Shoreview, Minnesota, were invited to make short videos detailing their struggles with mental disabilities, including autism, PTSD, depression and anxiety, bipolar disorder, and traumatic brain injury, for a special fifth-Sunday meeting, planned by Relief Society president Ashely Swenson, and Jessica Kimball, who both have sons with mental disabilities. As parents of a son with autism, ADHD, and anxiety, this meeting was particularly important to us.
At this meeting, courageous ward members detailed their personal struggles and offered advice to others on how to help them.
Matt, who suffers from bipolar disorder, said, “Conditions such as mine can’t be overcome without help, without medication. The worst thing anybody ever said to me was, ‘Pull yourself up by the bootstraps.’”
Joy, who struggles with depression and bipolar II, said, “One of the challenges of depression is that others can’t see it. When it’s hard to see, it’s hard to relate to.”
Jessica Kimball—whose 9-year-old son, Alex, suffers from a host of disabilities, including autism, anxiety, and a rare genetic disorder as well as several physical ailments—shared, “I think often Alex feels like he’s just invisible. He’ll try to engage; he’ll try to ask people for a high five or a wave or something. But because his language isn’t really articulate, people don’t understand him and inadvertently ignore him.”
Near the end of the presentation, the video clip we had created came up, detailing our son’s struggles. Brian’s face appeared on the screen with Kurt gently asking, “What would you like ward members to know about you?” Brian looked uncertain for a moment before he gathered his resolve and said, “That I exist as a human being.”
It’s easy to see why Brian might feel invisible to the rest of the ward. His disabilities make it nearly impossible for him to attend church. As with many people on the autism spectrum, Brian processes sensory information differently from the rest of us. He has difficulty concentrating and filtering out the stimuli that most of us barely even notice. He is aware of every noise made by ward members shifting in their pews, the crying of every baby, the echoing boom of the microphone. The bright lights are overpowering. The texture of his dress clothes is distracting and uncomfortable to the point of being unbearable. Most of us find our souls stirred and hearts lifted as we join our voices in a reverent hymn. For Brian, the music is a physical assault, an impenetrable wall of sound hitting him in the face.
When Brian is overwhelmed, he often responds with uncontrollable outbursts. Sometimes they are nonsense noises, and sometimes they are exclamations that can seem rude or even offensive. “Shut up people,” might be his response to too many voices singing a hymn. These outbursts embarrass Brian. He is quite aware that his behavior is atypical. He is ashamed because he cannot control himself or respond the way that others do—the way that he feels others expect him to. We believe it is this feeling of letting people down that makes church most unbearable for Brian.
We tried for years to help Brian fit in at church. We would take him into the hall during hymns. We would give him sensory breaks outside. We would speak encouraging words. And the ward members also tried their best. Brian was even assigned a helper in Primary who tried to redirect his focus.
But nothing worked. Brian and his helper ended up spending all of their time in the gym with the lights dimmed. Over time, the outbursts became louder and more frequent. We began tag-teaming our callings so that we could take turns leaving early with Brian. Soon, we no longer came to church in one car, like a family. Eventually we realized that we were becoming more and more detached from our other children’s church experience, and—most concerning of all—Brian was developing an animosity toward church that was starting to affect his view of the gospel. So, we quit bringing him.
Now, Brian stays at home on Sundays. We teach Brian ourselves the best we can, and, we have found that with Brian’s ADHD and anxiety, less is more. Weekly family home evenings—complete with opening and closing prayers, a lesson, hymn, and activity—don’t work for our family. Weekly is too infrequent for Brian’s need for order, and all of those components take too long for Brian to maintain focus. Instead, we say a nightly prayer, show a gospel art picture or short video, read a scripture or quote, and have a short discussion in five minutes or less. Though Brian’s and our family’s church experiences are different from those of most people’s, we believe that as we do this, we are still nourishing Brian’s faith. And that’s what is important to us right now.
The 1995 First Presidency advised in the “The Family: A Proclamation to the World,” that “Disability, death, or other circumstances may necessitate individual adaptation” (emphasis added).Though this quote doesn’t specifically refer to church attendance, our family has taken it to heart and applied it wherever we need to. These words have helped us find comfort in the fact that what works for us might not work for someone else and vice versa. Every family has its own circumstances, and the specifics of each disability are unique to the people involved.
Each family should find the accommodations that work for them and confirm those with their bishop and the Holy Spirit. Here, we share a few things we’ve learned from our own experience and from that special fifth-Sunday meeting that may help you, whether you have a child with a disability or you have a ward member with special needs to serve.
Thoughts for Parents
Attend church if you can. Even if you believe your child is being too disruptive in church, don’t stop going if church attendance remains a strengthening experience for you and your family members. Your attendance can help other ward members learn patience and acceptance. When we were concerned about Brian’s behavior at church, our bishop pointed out that “it’s his sacrament meeting, too.”
It’s okay to ask for help. When we determined that church attendance was becoming detrimental to Brian’s spiritual growth, we invited the missionaries to give a short lesson in our home each week. We also asked for and received individualized in-home help with Boy Scouts. Although these measures were not visibly helpful to Brian himself, the visits did bolster the rest of the family’s morale. These visits helped us to stay focused on teaching Brian the gospel, reminded us that we weren’t alone, and filled some of our spiritual needs.
You can personalize your approach. If church attendance and weekly family home evenings don’t fill the spiritual needs of your child, seek alternatives. Don’t give up. And remember that less is often more for people with mental disabilities. Just move forward one step at a time and counsel with the Lord on the best practices for your family’s situation.
Remember that ordinances can sometimes be adapted and personalized. When Brian was baptized, we tailored the event to his needs. We limited guests to our immediate family and a couple of his Primary teachers. Each family member had a role. Kim played piano, his sister gave a short talk (more like an informal conversation sitting face-to-face with Brian), his older brother baptized him, and Kurt confirmed him. Hymns were played but not sung. As you prayerfully consider individual adaptations, seek help from your bishop and other auxiliary leaders.
Consider that maturity may be an issue. Though Brian is 14, we are currently waiting until he matures a bit more before he receives the Aaronic Priesthood. We hope that one day he will be able to pass sacrament at a sensory-sensitive sacrament meeting tailored for him and others who struggle with traditional church environments. But for now, we continue to find hope and ways to meet Brian’s needs through the loving examples of our ward family.
How Ward Members Can Help
Reach out. Ashley Swenson, whose son suffered a severe injury to much of his brain, has this advice: “Be brave. Reach out. Go beyond your comfort zone.” Personally, we have a great love and respect for those who heed these words—whether acquaintances or strangers. At times, their words and gestures have been just what we needed, like the fellow customer in the grocery store who turned to Kim and asked, “Paper or plastic?” before bagging her groceries during one of Brian’s particularly challenging days. We appreciate gestures of all kinds, even awkward ones, when we sense the love and concern behind them.
Consider asking for information. Most of the participants in our ward’s fifth-Sunday meeting said that they want people to ask them about their disabilities. Emma, who has multiple personality disorder, says, “I just want people to ask because I know that I’m very confusing.” Andi, who suffers from PTSD and anxiety, says, “Better to ask me what’s going on than to assume.” Asking for more information can be difficult to navigate because every individual has his or her own level of privacy. In these cases, it is best to follow the promptings of the Spirit. But as we mentioned before, things done and said in a spirit of love and concern are received best.
Assign a helper or volunteer to be a helper. Even though having an assigned one-on-one helper during the second and third hours of church didn’t work for Brian, this approach has been beneficial for many other ward members. With the help of parents’ input, Church leaders can prayerfully invite a ward member to be a special helper, and ward members can let their leaders know that they are willing to help. Assigned helpers can assist in a variety of Church activities, including Boy Scouts and activity days, and they can even make weekly home visits.
Consult LDS.org. Joy, who has battled mental illness and has also worked as a psychiatric nurse, encourages ward members to consult LDS.org. At lds.org/mentalhealth, you can find advice for both sufferers and concerned loved ones, videos from Church members with mental illnesses, and other spiritual and temporal resources.
Be supportive. A few years ago, a friend and fellow ward member observed, “When you have a broken leg or a cancer diagnosis, ward members are great about showing up with casseroles, support, and kind words. But when I talk about my depression, people run away, or even worse, tell me I need to pray more.” Jeffrey R. Holland, in his October 2013 general conference talk titled “Like a Broken Vessel,” said, “Broken minds can be healed just the way broken bones and broken hearts are healed. While God is at work making those repairs, the rest of us can help by being merciful, nonjudgmental, and kind.” As a ward member, try to be a friend and remember that all challenges are not visible.
Since that very special fifth-Sunday meeting, ward members with mental disabilities have been more open about sharing their struggles. And other ward members are increasingly opening their hearts and minds to the very real challenges of mental illness. Swenson recalls the spirit of unity that was felt that day, “All those adults and youth and no one made a sound. They just listened and absorbed.” And while that special spirit doesn’t mean everyone is perfect in knowing what to say or how to help, it does mean that when Brian wonders if he is understood, we can gratefully say that, together, we are making progress.