Last weekend, Adam went camping with his dad for the first time. And the most wonderful thing happened: he had a blast.
Living with autism, there are things we parents just get used to not being able to do with our children. We stand in groups of parents who are chattering about all the things their typically developing children are into at the same age (camps, Scouts, camping, books, sports) and smile, thinking, “How odd is it going to sound if I throw in that for the first time, my nine-year-old son didn’t squirm uncomfortably when I went to hug him, or that finally when we get out of the car at the grocery store, I don’t have to worry that he’s going to run away?”
New experiences can cause tremendous anxiety for our kids, who rigidly stick to what they know, often with obsessive repetition, for reassurance. I heard a podcast interview recently featuring an autistic adult who explained that, as a child, he often asked the same questions over and over, even though he’d heard the answer hundreds of times. The repetitive sameness and consistency of the responses brought him a feeling of security at a time when he continually felt insecure in his environment. I chuckled, nodding and thinking of Riley’s repetitive questions (which I sometimes believe will one day put me in a straight jacket), when the interviewer said that reading this explanation had given her permission to give in to just answering her own autistic son’s questions instead of allowing them to drive her crazy.
Imagine for just a moment that you have difficulty communicating, everyone talks too quickly and uses too many words and it’s hard to keep up, you have no means with which to prioritize sensory information, and your nervous system is plagued by sensory integration disorder. In other words, some sensations assault you with such raw, extreme volume that sensing them hurts, and others come in so muted that you’re always testing them to see if the information you perceived was real or imagined. Then think about what it must be like to handle all of those challenges and be thrown into a completely new situation. You’re not sure what’s going to hurt and what you’re going to wish you could feel more. You’re not sure when someone’s behavior or expressions won’t make sense. You’re not sure when something will scare you, or when you won’t understand, or when something you need will not be there and you’ll not know how to communicate how badly you need it. If you can walk down that path just a few steps, you won’t have much difficulty understanding why our autistic children prefer sameness and routine.
On top of all that, it seems that most autistic minds classify information beginning with specifics and eventually moving toward generalizations. Most of us learn in the opposite way. There are trees, and eventually we learn that there are specific kinds. Many articulate adults with autism have described learning first thousands of specifics down to every visual detail and only later understanding that all these specific things fit under one category. It’s very hard to establish behavioral rules when generalizing comes late, after all the newness and fear of the unexpected has set you completely on edge.
So, when some of the men in our church family started tossing around the idea of a father-son camping trip, Kevin and I silently wondered, glancing at each other warily, if this would be yet another thing it would be better just not to try. We had lots of questions: Would Adam be willing to sleep in a tent? In a sleeping bag? Would he understand about going to the bathroom in the woods? Would he wake up in the middle of the night and/or be unable to sleep and wake the rest of the camp? For us, new “adventures” often feel exhausting before they feel worthwhile.
For years, Adam could not sleep unless he slept in his own bed. In his mind, rest happened in a specific place, and there existed no general list of items that made up a bed. We could put his pillow and his blanket on a couch somewhere, and he might be able to hang out there, but he couldn’t sleep. Not only that, but most autistic children suffer mysteriously from oddly interrupted sleep cycles and difficulty with sleep, and Adam is certainly no different. Nights staying with relatives turned into nightmarish experiences. If we could get Adam to sleep, one unusual noise would wake him up, and then he’d be up the rest of the night, trying to entertain himself with noises we feared would (and sometimes did) wake everyone in the house. He cried hysterically in the darkness when we insisted, sometimes with an arm wrapped tightly around him, that he be still. He did not understand, back then, why we wanted him to be quiet. Kevin and I got used to getting almost no sleep when we traveled away from home. We can remember being so exhausted that we pleaded with each other in the darkness, our eyes aching, “Honey, please, can you try a while? I’ve been up with him for hours and nothing is working.”
Eventually, after we spent many sleepless nights beside him begging him to sleep, Adam learned to generalize a little bit. A bed, if not his own bed, was still a worthy place to rest. That made it a little easier to travel, but where ever we went, we made sure Adam could actually sleep in a bed instead of on the couch or a pallet on the floor. A bed had to look like a bed, or it wasn’t a bed.
So, when the camping trip came, we wondered if Adam would sleep in a sleeping bag. That was pushing the envelope a bit, never mind the part about being on the ground in a tent.
But Kevin’s a good dad, and we reasoned that we’d never know unless they tried it. We joked with each other about how the trip would be a memory maker, one way or another. And the camp was near home, so if worse came to worse, they could pack up their stuff and come home in the middle of the night. Or so we thought.
Friday night, as I sat by the pool talking to some of our good friends, another dad who had done father-son camping in exactly the same location pointed out that they lock the gates at 8 o’clock. I smiled at the new information, thinking of Kevin with a heavy arm wrapped around Adam. “Well, let’s just hope Kevin doesn’t have to discover that tonight.”
So, early Saturday morning, I sent Kevin a text: “How’d he do?”
The response filled me with such joy that it made me laugh out loud. “He is having a wonderful time. He’s doing better than I am.”
As it turned out, Adam took to camping right away. He loved being there with the other boys, playing chase and hanging out nearby while some of them went fishing.
While the other boys were figuring out how to fling their lines out into the water without catching a tree, Adam hung out on the bank, testing LALALALA sounds for resonance. “I’m sure he was scaring the fish away,” Kevin said, chuckling.
I am so thankful for this spiritual family of ours, these true friends who accept and adore our children. They make it so much easier to try new things. Days before they were set to go, Kevin and I agreed that at least if Adam got out there and went a little nuts, he’d be with a bunch of people who love him, idiosyncrasies and all.
Adam spent a little time trying to con one of our friends out of his iphone, gesturing toward it. “Adam’s ipod?” And when it was smores-making time, he wasn’t sure he wanted to eat one, fearing the scary texture of an unknown food. But Kevin made Adam take a big bite, and then he was sold. As it turned out, going to the bathroom worked out well after the first time. Kevin said that after a while, Adam switched from saying, “I need to go to the bathroom,please” to “I need to go to the tree, please.”
When it was time to go to sleep, Adam started giggling, probably because he was actually giddy about sleeping in the tent. We’ve recently discovered that Adam likes the sensation of sleeping in small spaces, and Kevin said that when they first set up camp, Adam kept trying to hang out in the tent and do math.:) At around eleven o’clock, when everyone was finally getting quiet and drifty and Adam started laughing, Kevin thought, “oh NO.” But all it took was one firm “It’s time to sleep, Adam,” from Dad and Adam fell quiet for the night. It was Dad who had trouble sleeping, because his blanket was too short, and because his body doesn’t cooperate like it used to.
Camp breakfast on Saturday morning—heaping piles of eggs, pancakes, and bacon—was Adam’s favorite. He ate a big plate of everything and then went back for more bacon. As they were leaving, Kevin asked Adam if he’d like to go camping again sometime. And the “yes” that followed was everything we needed to know the trip had been a success.
And then yesterday afternoon, as Adam ate supper, a bit dismayed about his brown rice and broccoli casserole, he started talking to me.
“Fish. Fish for Adam on Friday.”
“I’ll make you some fish next week, Adam. Tomorrow you get to eat pizza for supper.”
I watched him thinking. Searching for words. I was patient, waiting.
“Camping. I love camping on Friday.”
Last Saturday afternoon, I had taken in all of Kevin’s stories with laughter, and admittedly, a few tears. The success of this trip is yet one more wonderful sign that Adam is growing in amazing and beautiful ways, in ways we’ve dreamed and prayed for him. The pressing on feels overwhelming every day, the challenges too great, the process too exhausting, but to paraphrase something one of my favorite Bible teachers said, “it all becomes a dance when we place it in God’s hands, trust Him with it, and let it be what He has in mind instead of what we had in mind.” What He had in mind is never what I expected. But in the least expected places, I see His glory. And it leaves me speechless.