Jerry’s journey: Learning to live with autism

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“I kind of want to invent a time machine so I can go back in time and stop me from doing the stuff I do. And I would like to see what I become after I invent the time machine. I would want to go forward and backwards in time, but make sure not to mess with time.” — Jerry, 2015

I first met Jerry in 2007, when he was four years old. I had recently started dating his sister, Becky, and she was eager for me to get to know this tiny whirlpool of chaotic energy that had come into her life unexpectedly when she was 16. So on a bright, early spring afternoon I met them at a park near my apartment in Roanoke Rapids and said hello to a chubby, smiling little sprite in red shorts and ankle socks. After a few minutes, Jerry proceeded to leap up onto a picnic table and do an extended Pee Wee Herman dance before sailing off with stuntman abandon and sprinting towards the swingsets.
“Higher, higher!” he laughed crazily, a small bundle of ecstatic life framed against the cloudless sky, sailing farther and farther away from me and then swinging back into my arms. “Higher, higher!”
It was a voice I would come to know as well as my own in the coming years, in all its goofy delight, earnestness and shrill rage, as my relationship with Jerry grew from that of a friend, to a brother-in-law, to something resembling a father.
But on that day at the park, he was simply another part of the warmth and sun and budding life of a new season, and a possible glimpse into my future.

How would you describe yourself?
“I’m Jerry and I like playing video games and I like watching TV and I like playing games on my phone like Minecraft and all sorts of stuff. And I like to learn stuff and play some basketball…” — Jerry, 2015

Jerry was diagnosed with ADHD (Attention Deficit Hyperactivity Disorder) when he was two years old, an extremely young age. When he was 10, he was diagnosed with autism, a neurodevelopmental disorder characterized by impaired social interaction and verbal and nonverbal communication, as well as restricted and repetitive behavior. Though its causes are not well understood, autism affects information processing in the brain by altering how nerve cells and their synapses connect and organize.
From our initial meeting, it was obvious that Jerry was different than other children his age: louder, less verbally advanced and given to outbursts of sudden, nearly uncontrollable anger. He was also adverse, in the extreme, to changes in his routine, especially in regards to his diet. It was pizza, macaroni and cheese, and McDonald’s chicken nuggets (never Burger King or Wendy’s!! And never, ever chicken FINGERS!! ) or it was nothing. No discussions allowed.

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There were also other, more disturbing behaviors. Jerry would sometimes use the bathroom in his closet, the same place where he would hide food and candy. He would draw on his bedroom walls and carve ruts in his furniture.
But it was also very apparent that, despite his obvious quirks and limitations, this kid was smart. Give him an electronic gadget and he would have it mastered in a matter of minutes; put him in front of a puzzle and he would entertain himself for hours piecing together table-sized landscapes and cartoon characters.
By 2008 I was spending more and more time with Jerry. By now, Becky and I had moved in together, leaving our cramped apartments for a ranch style house in the country. Soon, Jerry was spending weekends with us, tagging along on nature trail hikes and trips to the Roanoke River. One morning, while Becky and I slept, he snuck out of his room, opened a bag of chocolate Easter candy, and helped himself. Whatever he didn’t eat he fed to our two dogs.
Standing there in the early morning sunlight filtering through the blinds, his brown liquid eyes staring down at the shiny foil candy wrappers scattered on our floor, it was all but impossible to be mad. Jerry was fine; the dogs were fine.
But, it was a scary moment, the first time that I fully realized that Jerry’s actions — and just as importantly his misunderstanding of those actions — could have dire consequences for himself and everyone around him. I think it was the first time I truly understood that Jerry wasn’t a “normal” child.

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If you had to pick one thing, what would you say is the most important thing in the whole world?
“I would say school, because it’s how people get good educations and they don’t…see, see if we didn’t have school we wouldn’t know how to talk, we would still be like, cavemen.”  — Jerry, 2015

In 2009, a few months after we were married,  Becky and I moved three hours south to my hometown of New Bern. Jerry, who lived with his parents in Jarratt, Va., was still a frequent guest, staying with us for long stretches during spring breaks and holidays.
But as much as we enjoyed having him, the visits became harder and harder. As he grew older, the irrational behaviors and outbursts became magnified. What we once had been able to laugh off as adorable idiosyncrasies were now becoming hardened, intractable elements of Jerry’s personality: the screaming fits; the inability to sufficiently bathe himself or practice proper bathroom hygiene; the near pathological fear of new foods and experiences. One night, while watching TV on our couch, Jerry’s eyes rolled back in his head and he began to shake in what looked, terrifyingly, like an epileptic seizure. It turned out to be simply an extreme reaction to the sight of blood (something he shares with his sister), but it came out of nowhere. There was nothing remotely funny about any of it.
In 2012, after several months of late-night discussions and soul searching, Becky and I decided to do what would have once been unthinkable: approach her and Jerry’s parents about the possibility of him coming to live with us, permanently.
The decision was partly based on my wife’s training in Applied Behavior Analysis (ABA) special needs therapy and the improved education opportunities Jerry would have in our local school system. But the most important factor was that we knew his parents were completely overwhelmed. Jerry had come into their lives late and with enormous challenges that would have taxed the resources of even the youngest parents. They were at the limit of their physical and emotional abilities to handle him, as simple as that.
If we don’t do it now, we reasoned, we’ll wake up one day and be faced with an out of control 16-year-old. It will be too late.
I remember sitting in the courthouse in Emporia, Va. with Becky’s father, waiting as she and her mother went before a juvenile court judge. When they came out, Becky and I were Jerry’s legal guardians. It was strange for us. I can’t even begin to imagine how hard it was for the parents that had shared their lives with him, nearly every day, for the last 10 years.
A few weeks later, Jerry came home with us to New Bern.

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Do you ever feel like you get out of control?
“Yeah, a little, sometimes. It feels like I’m being possessed or something.” — Jerry, 2015

A baseline of normalcy.
That’s the best way I can describe our goal for Jerry during the first year he was with us. The plan was simple: get him to the point where he could do the bare minimum to take care of himself, eat what was put in front of him at the dinner table, and accompany us to a restaurant or grocery store; in short, do anything other than sit in front of a TV screen or play video games without having a panicked, screaming meltdown.
There was also the issue of Jerry’s various medications. There is no one-size-cures-all prescription to keep autism at bay. Stay on one pill too long and it ceases to work; get the dosage wrong and you’re left with a nearly unrecognizable, zombie-like child.
At best, the medications help mitigate some of Jerry’s most extreme symptoms: the hyperactivity and tendency to speak out in loud bursts at inappropriate times; the inability to stay focused on one task without becoming distracted; the repetitive motions and tics such as pencil shaking, foot kicking, and teeth chomping (this is nearly unbearable some days.)
The lowlights have been numerous: the screaming, sobbing, violent outbursts over food such as broccoli, meatloaf, and tuna fish sandwiches; the constant, seemingly unmotivated lying; the candy and food wrappers hidden beneath couch cushions, under beds and behind major appliances; the wanton destruction of shower curtains, walls, bed frames, and ceiling fans; the e-mails and calls from school officials telling us Jerry simply refuses to do his work (or, when asked a question by his social studies teacher, responds  “Your momma!”); the hours and hours spent prompting Jerry to concentrate long enough to finish One. Simple. Homework. Assignment.
And then there was the time he peed in a plastic container of Legos and blamed it on a ghost. Other than the smell, I have to admit it was pretty funny.

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There’s simply no way to reach him. Nothing we’ve done, nothing we’ve said, has made one bit of difference. He’ll fall further and further behind, until one day he’ll just give up completely, and place himself beyond our love, beyond our protection, beyond hope. These are the thoughts that  come at the worst moments, when I look into his uncomprehending eyes and see nothing there to reason with or fight for. There are days, weeks, when he falls so far from us that he almost vanishes.
But then there are the other times, fewer and farther between, but in the long run, so much more significant. In the four years since Jerry came to live with us he’s grown to not only tolerate new foods, but actually look forward to trips to Mexican, Chinese, and Indian restaurants. He’s learned to ride a bike, taken Taekwondo lessons and played in a basketball league (he even scored a few baskets!). He’s learned to swim, sort of, in the Atlantic Ocean and been kayaking on the Bay River. Maybe most important of all, he’s made friends who understand and look out for him.
All of these accomplishments have given Becky and me glimpses of the smart, independent young man Jerry could one day become. All of which makes the setbacks so much more heartbreaking.
The last year has been rough. At 13, it’s hard to know what percentage of Jerry’s obstinance is the autism and how much should be chalked up to normal teenage rebellion. He’s defiant, infuriatingly so, and tends to ignore even the simplest requests. The lying has reached absurd new levels, as have the temper tantrums.
If Jerry wasn’t high functioning, if he was like other, severely autistic children who I’ve met in the past….well, I can’t even contemplate that life.

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Do you remember the huge crying battles we used to have with you just to get you to eat anything besides pizza and macaroni and cheese?
“I think that that me’s gone. Say hello to the new Jerry Dale Lotts, Jr.” — Jerry, 2015

I thought I knew how this article ended: not on a depressing note, but not an overly optimistic one either. But then…
But then, Becky and I come home last Friday night and Jerry is sitting in bed, not playing a video game, or conducting Lego action figure battles or furtively hiding candy beneath his pillow. What Jerry is doing is something that, in the nine years I’ve known him, he has never willingly done on his own. He is reading. Not for a school assignment, not to fulfill the terms of yet another punishment, but for pleasure, for the pure fun of it.
I know there will be disappointments and setbacks in the future, but this felt, this still feels, like a turning point, like something new and hungry has awakened in Jerry’s mind. I hope he feeds it until it’s near to bursting.

What do you want to be when you grow up?
“ I want to be a game designer. To be honest I want to make games like no one’s ever seen before.” — Jerry, 2016

I can’t imagine what the future holds for Jerry. As hard as I try, I can’t picture him as a fully functioning adult, driving a car, holding a job, taking care of a family of his own.
What I do know is that Becky and I have done everything in our power to give him a fighting chance in life. I’m sure we’ve made mistakes, been too lenient or not lenient enough, pushed him too hard or allowed him to spend too many hours playing videos games instead of studying. At some point, physical and mental exhaustion waylays even the most determined plans to shape a child’s life, to spend hours on homework or helping them memorize flashcards every night.
But, he’s ours. No matter how many times I may have wished him away or questioned mine and Becky’s sanity for bringing Jerry to live with us, he’s ours.
I can’t imagine what the future holds. And I can’t imagine our world without him.

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