How His Special Needs Reshaped Our Understanding of God (and the Need to Change)
by Daniel D. Maurer, Writer and Editor at Clergy Stuff
We were out driving when it happened. I'll never forget that day and the panic and despondency it brought to our young family.
I was driving the car. My wife was in the passenger seat, and our son, Joshua, was in the back, strapped into his own car seat with the little juice box holders on each side.
Josh had been sick. It was nothing big, just a bad cold or a touch of the flu. But it was enough to spike a fever.
At that point in early 2002, we already knew that Josh had febrile seizures, but he hadn't yet been diagnosed with an actual seizure disorder, only that if the right conditions presented themselves, he could seize. Every time it happened, it was terrifying. Minutes seemed like hours. We knew that if they lasted too long the full-blown tonic-clonic seizures could cause brain damage.
That time out in the car was especially concerning, because we were out in the middle of nowhere. We were driving along Highway 23 in western North Dakota, the locale where I had been serving as an ELCA pastor at the time. All of the sudden, we heard grunting noises coming from the back seat. When we looked back, we saw Josh arching his back and his eyes rolling back into his head.
My wife screamed, "He's having a seizure! Pull over!"
I pulled the vehicle over to the edge of the road. Nothing but open sky spanned in every direction. We felt so lost, so far away from civilzation (and help). We both broke down in the middle of nowhere and cried.
We made it through that day. So did Josh. That particular seizure lasted only 8 or 9 minutes. ("Only" . . . yeah, right.) But my wife and I soon would discover that our trials were only just beginning.
Shortly after that incident, Josh was diagnosed—first with an actual seizure disorder, then soon after with a language-processing disorder and non-typical Asperger syndrome (which after the advent of DSM-V, is categorized within the larger umbrella of autism spectrum disorder). When he entered school, we suddenly were thrust into the world of IEPs, constant visits to multiple physicians to adjust his medication, and of course special-ed planning sessions that seemed to have no easy solutions for Josh.
I won't mince words: it was hard work for all of us! Ultimately, Joshua's process was worthwhile, for both him and us because he gave us something we hadn't anticipated—a new and different perspective about life.
Here's what I mean: Josh has a unique view of the world that we would never have known about if it weren't for his special needs. It's one of the reasons why Clergy Stuff's founder Kace and I came up with the name for this blog, An Exceptional People. We firmly believe that faith communities and congregations have much more to GAIN from the perspectives people like Josh can offer than anything.
Since Josh learns differently and sees the world differently than either his mother or I do, his understanding of the world can provide a much needed perspective.
Another story for you . . .
Years after the seizure incident in the car, one day I was at home alone with Joshua at the parsonage in Underwood, North Dakota. It had been a slow day and I think I had just finished up writing the sermon I would be giving that Sunday.
Suddenly, a knock came at the door.
It was one of my parishioners. She was crying uncontrollably. I invited her in and Josh came into the living room. She told me why she was upset, that her husband's dementia had gotten so bad and that he was becoming irrational. As I listened intently to her, Josh (who must have been around 4 or 5 at the time) grabbed ahold of her hand and said, "It's okay. Everything is going to be okay. Just know it's okay. You'll be all right." Josh's empathy surprised the woman and me so much that we all starting crying together right then.
Josh's compassion was not only touching, but also completely unexpected. I had always believed that kids on the spectrum didn't feel emotion like "normal" people. In fact, I've since learned that some researchers speculate they actually feel far deeper than any of us realize, and in fact perceive the emotions of others so intensely, that they actually cannot process all the emotional activity in a way that you or I might.
And this it what leads me to the point I want to make:
Exceptional people like Joshua are not people for whom we need to "accommodate" in the church, but instead people whom we need to actually listen to.
What unique witness do they have to give? How are churches crowding out that very perspective which could lead to a different and worthwhile understanding of God? I think it's high time that we move beyond shallow “awareness” of autism or other "disorders" to learn to learn from them.
Josh doesn't like church. No, that's not right. In fact, he hates it. Partly because he can't track all of the liturgy in worship. But what's more, he doesn't seem to connect to his peers. His learning disability makes any "normal" confirmation program pretty much ineffective, if not downright counterproductive.
The church we currently belong to has tried a few things. Right now, Josh is collecting the Sunday School offering every other week or so. I'm heartened by such efforts.
But truthfully, I'm also incredibly frustrated and demoralized. I feel that my wife, Carol, and I aren't somehow fulfilling the baptismal promises we said we would carry out for our son.
I don't have all the answers. I certainly don't know any easy solutions. What I will say is that although congregations seem to be "accepting" of people with cognitive and emotional disabilities, they certainly aren't embracing a new theological perspective from people like Josh might have to offer, much less implement in their worship practices.
This might seem overly harsh, and I may be casting more blame on professional clergy than is reasonable. But, dang it! Our son deserves a chance, and the inertia of the institutional church seems far more shoulder shrugging than it is answer seeking.
I'll close with a plea. Kace and I started this blog because we believe exceptional people like Joshua have more to offer than we're giving them credit for. Please leave a comment on your take on Josh's story. What things is your congregation doing that are helpful? Can you relate with my frustration as well? What insights ring true to you that others may already be taking steps to implement?
Josh continues to reshape our understanding of God in that he sees the things that we do not. Perhaps he sees the futility of "church stuff" for what it sometimes can become—an exercise in over-ritualization without the benefit of real-world actions. (Also, I need to be honest and say that some of Josh's negativity can only be attributed to the fact that he's 16 years old!)
Still, he values justice and compassion far more than we know; he shows us what God is really all about . . .
Daniel D. Maurer is the Director of Creative Content & Web-Design at Clergy Stuff. He's also a freelance writer and award-winning author. You can read more about him here, and at the other blog he keeps Transformation is Real.
Joshua Maurer is 16 years old and attends MAC (Minnesota Autism Center) in Eagan, Minnesota. He's a huge fan of Minecraft (the online gaming phenomenon), his two cats Mr. Kitty and Princess Chloe McMuffin, and enjoys singing, movies, and dressing up. The high-point of each year continues to be (and probably always will be) Halloween.