By Eric R. Williams
I’ve just re-read this article and counted no less then 54 references to bodily functions…so if you are faint-hearted it might be best to skip a few pages. If you’re still reading, roll up your sleeves, grab a half dozen wet wipes and brace yourself…we’re going in.
First things first. Three years ago I fell in love with Kristina and became the step-father to an eight year-old girl Tara and a nine year-old boy Tom. Tom has autism. He doesn’t speak. He wears diapers and rolls a belt. When most people hear about Tom, they say, “I’m so sorry,” or “How sad!”, as if he is a tragedy. However, when they get to know Tom and watch him interact with the family, they quickly lose this image. My boy is fun and clever; he gives as much love and joy as he gets. There are struggles, to be sure: he eats his sister’s toys, pulls down the curtains, pours shampoo onto the bathroom floor. These things are part and parcel of living with Tom, and as a general rule aren’t really that big of a deal. The tough part, the real challenge is diapers…or more honestly, what ends up in them. I guess it was about a year ago that Tom discovered poop. I had been up late watching a movie and on the way to bed, decided to check on him. Opening the door to his room, I saw what would have been enough to shock a New York garbage man. Tom was break dancing on the slick linoleum floor of his room, covered in poop. Like most disasters, this one wasn’t nearly as horrible as it looked. I plopped Tom into the bathtub and Kristina and I took a few turns wiping down the room.
At that very moment I became a “clairvoyant”. I saw into our future, Tom as an adult peeing on the guests at parties, Tom wearing sew-up suits to bed; I saw a line of dirty diapers stretching endlessly to the horizon. That was the day Kristina and I decided to give toilet training our complete and undivided attention. Work, friends, hobbies, all would take a back seat to potty training Tom.
Why hadn’t we tackled this problem years before? Well, Tom was a very different child a few years ago. He bit, scratched and punched so much that everybody who came in contact with him left with bloody scratches. He threw tantrums and pounded his head against the wall. When Tom was six, his parents took him to the Option Institute where they spent a week in training. When they returned they set up an intensive program. Tom spent six to eight hours a day with “facilitators.” That’s how I entered the picture. We would join Tom in whatever he wanted to do, even if he just wanted to roll a belt for six hours, or hop and yodel. The results were spectacular. The more time Tom spent in a structured, cozy environment with people who accepted him as he was, the softer and happier he became. After a year, I fell in love with Kristina, Tom and Tara, and (to make a very long story, very short) moved in. Tom started back in his special school with other kids. Now he rarely scratches or bites, he almost never bangs his head, and he brings us the honey jar instead of dumping it on the floor. The combination of two parents on the same track, a structured safe environment, and a big, crazy play-room to channel surplus energy, really changed his life.
And finally, he was available enough to attempt potty training. Kristina and I worked out a game plan: we would throw everything we had ever seen or read about potty training into the battle and invent as many things we could along the way. We had previously researched potty training and found conflicting methods, but similar results. It seemed that any concentrated effort that stemmed from acceptance had a good chance of working, and methods that used any form of punishment were equally ineffective. The focus would have to be on fun, rather than negative reinforcement. We all can pretty much agree that it’s hard to use the toilet when you are nervous or uncomfortable. We had to find a way to make the toilet the coolest place for Tom to be.
Like most guys I believed that all of life’s problems could be fixed with duct tape, glue and a bit of ingenuity. I spent several hours in the garage crafting the one and only, guaranteed successful toilet top, the cozy pad potty enhancer. And as potty enhancers go it was a beauty. Formed from a boat pad, molded over a child’s plastic toilet top, it was like a giant horseshoe, sleeved with two thick cotton ski socks. My theory was that Tom didn’t like the old toilet seat because it was cold and just too wide for his nine year-old ‘patootie.’ I marched into the house triumphantly and fitted it into place. Let the miracles begin!
Tom eyed the thing with the skepticism it deserved. I picked him up and lowered him onto it. We stared at each other with anticipation. Things were going to start happening now, I could just feel it. Now…Or soon at least… Pretty soon anyway…
After about an hour the only thing I could feel was my butt going numb from lack of blood as I sat cross-legged on the floor. Every time I moved he would hop off the toilet and eventually, I let him go. I limped into the living room and Kristina patted me.
“It’s a good start”, she said, “We just have to find a way to keep him on there till something happens.”
We had been avoiding the bribery method with Tom because we wanted him to find more purpose to life’s actions than gummy bears. However, desperate times called for weak resolve.
“How about giving him snacks on the toilet,” I said. ” Not as a bribe, but more as a …as a…”
“Reward?” she offered.
“Yes! A reward… Exactly! Only, these are snacks he could have anyway, so it’s just the location we’re changing. From now on, toilet time will be snack time.”
To Kristina’s credit she went along with this crackpot plan reluctantly. The following months will be known as ‘the summer of our discontent’.
Tom sat on the toilet, munching for hours on end, as we slowly lost interest in most of the snack foods we used to enjoy. To Tom’s credit he never screamed or fought the toilet snack rule, he simply sat, ate and waited.
One day, when I watched one of his babysitters grimace as she poured corn chips into a bowl, I decided to throw in the towel before the Health Department came in to shut us down.
Life moved on.
A few thousand diapers later, we moved into a new place. After painting and fixing everything up so nicely, we really wanted to keep it that way. We wanted to leave the diapers at the old apartment. We had to try again; week after week we sat him down and waited. I even brought Tom along every time I had to go, so he could see that the strange seat had a purpose. Eventually Tara got into the game. “Poooooooooooooooooooop, Poooooooooooooooooop,” she would whisper from the bathtub as Tom sat thoughtfully on the toilet, listening to her.
End result? Nothing, goose egg, zero, zip, nada.
Around Tom’s tenth birthday I was suddenly struck with a plan so flawless in its simplicity it had to work. I asked Kristina to take Tara to her grandma’s house; the two of them were to stay for the weekend. Tom and I were having a toilet training extravaganza. A forty-eight hour john-a-thon! We wouldn’t even leave the house. There were no helpers coming over, just Tom and I and a lot of food and drink. I would hold his hand for forty-eight hours, and we would spend those hours on or around the toilet. Hide the diapers…Ladies and gentlemen, get ready to ruuuuuuumble!
Most of Saturday morning Tom sat on the toilet, watching me watch him. Occasionally, I would ply him with apple juice and rub his shoulders like a boxing coach. Around midday I heard a faint musical tinkling. Tom looked at me surprised. I immediately called Kristina.
“He peed, he peed!”
Tom seemed happy with himself and we did a little joyful pee dance. For anyone else this would have been enough to call the experiment a success, but I had my eyes on the prize. Tom had picked up on the idea that dirty diapers were gross and had started taking them off and running around. One recent incident just before a dinner party had me running scared. Pee wasn’t the real issue and we all knew it. He had to poop in the toilet and that was that. He just had to.
By the end of Saturday Tom was uncomfortable and by that night he was walking like John Wayne and laughing at shadows. We slept on a mattress near the bathroom and twice in the night I awoke and sat him bleary-eyed on the toilet. The next morning I knew success was ours. He usually pooped several times a day. Surely he couldn’t hold out any more – could he?. That day is a blur of ten or fifteen hours on the toilet. What was he doing the whole time? I mean, kids are squirrelly at the best of times and an autist like Tom is usually a motion blur. How could I get him to sit that long? For some reason he seemed amused by the whole situation and he sat watching me with interest. He patted me on the head and laughed. He hummed and rolled a belt. He made faces and sang in his own secret language. He did everything but poop.
I remember seeing an old film about one of those crazy marathon dances they used to have back in the twenties. Well, by hour 48, I felt like Tom and I were final contestants in one of those mad dances. Holding each other’s hands, asleep on our feet, stumbling around, babbling. Kristina came in, took one look at the two of us and wisely put an end to the nonsense. He could obviously hold out till he hurt himself, and we couldn’t have that. She sent me out into the fresh air, put a diaper on Tom and that was that. He won; I lost, no two ways about it. I walked around the park in dark depression and came home to fitful toilet dreams.
I was as done as done could possibly be.
Finished with the whole crapshoot. Enough.
Over the next few days, Tom acted differently around me. He had always been my buddy, wanting me to swing him or wrestle, but this was different…he had an intensified interest in me. He would follow me around, climb into my lap and stare at me expectantly. I was done, but apparently, Tom wasn’t.
“What’s gotten into him?” I asked Kristina. “You would think after that weekend he would be sick to death of me.”
“Think about it,” she said, “how many nine-year-old boys ever get forty-eight consecutive hours of attention from their dads?”
I thought about that. I hadn’t had forty-eight hours of attention from my dad if you added them all together.
“You’re bonded by the experience.”
There was something else curious going on. He started sneaking into the bathroom and flushing the toilet over and over. There were still accidents, but they took on a pattern now, each one closer to the bathroom. One day, I took him to the toilet and he sat down and peed immediately. He would only pee with me though; when Kristina or any of his babysitters tried it, he absolutely refused. Kristina once spent an hour with Tom as he sat on the toilet only to have him stand up and pee on the floor directly next to it.
It took a while before others were allowed to escort Tom to the toilet, but soon he was doing it every day after school and we started leaving off the diapers for an hour or two at a time. I started experimenting with distance, once he sat down on the toilet I would move away, a little more each time, until I could stand at the door and he would still remain seated and pee.
After a few hundred incremental adjustments, I was finally able to stand in the other room and send Tom in for a pee. What had once seemed unattainable was now an everyday occurrence. When he needed to poop, he would find a diaper and run to us with it. We toyed with the idea of withholding them, but neither of us was up for another power play and it seemed wrong to punish him for the progress he’d made so far.
I will remember forever the day of the “Big Event” because it coincided with the completion of my first novel. After three years of struggle and endless rewrites I was finally finished with the manuscript and was basking in the glow of accomplishment. Tara had drawn me a card, Kristina had given me flowers and I just lazed around taking it all in. Tom sat in my lap humming and rolling a belt. It was the perfect day.
“The only thing that could top this,” I said to him, “would be a big poop from my boy. Someday it’s going to happen, I just know it.”
Maybe half an hour later, (and now I’m crying as I write this) I heard the toilet lid clang down. After a while I wondered why there had been no flush so I wandered in, and there was Tom trying to open the package of wet wipes. My wish had been granted.
That night my friend David called. “Hey, I heard the news, congratulations.”
“Thanks, I’m so happy, he did it when I least expected him to and now that he’s used the toilet once, it’s going to be so much easer for him to do it again.”
David paused…”Um…buddy…I was talking about your novel.”
Prologue
That was several months ago. The road has been a rocky one but steady and encouraging. The first two weeks were flawless, then a few weeks followed with one disaster after another, then a few weeks on and a week off. Now it’s been several months without diapers or disasters.
When people ask us how we did it the answer is simple. We didn’t. Tom did. What I thought was failure was in fact attention. And attention is what our children need; there is no substitute for it. You can’t fix a child with duct tape and corn chips, and you can’t really make a child do anything. More often than not it’s the trying that helps kids, not some formula, not solving, or fixing… just trying. All you can do is everything… and trust them to find use in what you offer.
BIO
Eric R. Williams is a severely dyslexic American freelance writer living in Norway. He has worked for over ten years with special needs adults and children. He has written several screenplays, a book of poetry and has recently finished his first novel. You can contact Eric at: Thereses Gate 4 B, Oslo, Norway 0452 or via email: gjems@online.no
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Reprinted with permission from the “Autism Around the World ” column that appeared in the Sept-Oct 2004 issue of the Autism Asperger’s Digest, the nation’s only magazine for the autism community devoted entirely to practical, actionable, useful information on all things spectrum related.
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