Transition to Adulthood

I’m married to an engineer. When Jason and Josh were toddlers, they’d fight in the back seat of the car. After one particularly bloody battle (the boys wouldn’t let me cut their nails), I dissolved into tears for probably the fifth time that week. Grief. Disempowerment. Envy. Anger. Autism. Twins with autism.

Steve wanted so badly to fix everything, back seat co-mutilation of my precious boys included. I came home from work one day, and Steve led me proudly to our Subaru Legacy.

“I fixed it,” he said.

“Fixed what?”

“The fighting!” And there in the back of the Subaru was a wooden contraption that lay across the back seat, on which the car seats were anchored and buckled properly into place. Between them, rising like an upside down T, was a vertical wall, separating the two boys. Steve had decorated the wall brightly with cling-on characters from Veggie Tales and Sesame Street. –Not an altogether bad looking thing at all, I had to admit.

It worked. It worked so well, people stopped me in the grocery store parking lot as I struggled with the boys and the groceries and said, “Holy Cow, that is phenomenal. Where can I get one??”

(If I see you on Shark Tank with this idea, I expect you to remember us in your royalties.)

I’m of the age when school systems were beginning to abandon the basics of reading, writing, history and math for more enlightened studies like The Literature of Television, The Anthropology of The Hobbit and, as it happened, Transactional Analysis (an as yet unestablished practice in psychiatry, for eighth graders. I kid you not.) I chose Transactional Analysis as my elective, mostly because I’d already read The Hobbit.

I remember two things about transactional analysis. The first is I’m Okay/You’re Okay, the paperback book that served as our text for the class. First published in 1969, by my eighth grade year in 1972 the book had reached the New York Times best seller list, where it remained for two years.

The title “I’m Okay/You’re Okay” comes from one of four positions author Thomas A. Harris, M.D. said we may assume, depending on the “transactions” (interactions) we’re having others:

• I’m Not OK, You’re OK
• I’m Not OK, You’re Not OK
• I’m OK, You’re Not OK
• I’m OK, You’re OK

The other thing I recall is The Sign. Whether The Sign is something Dr. Harris came up with or our teacher Mr. Mannix came up with it, I really don’t know; perhaps Mr. Mannix was the source, because The Sign doesn’t come up readily in a Goggle search. The way Mr. Mannix explained this to us was that every morning we wake up with a sign around our neck, a sign that says “I am a good person.” It’s a sign that makes us feel “I like myself, other people like me, and all is good with the world.”

But here and there during the day, people mess with your sign. Depending on the flavor of the “stroke,” (interaction), your sign can be nibbled away or built up. When strokes are good, the sign gets bigger; when strokes are bad, the sign is damaged and, depending on the magnitude of the slight, a small or large piece of your sign is ripped from it and flutters to the ground as trash. A good day is when you go to bed that night with at least some of your sign still intact. Perhaps because of a memorable classroom exercise that included cardboard signs slung around our necks with a length of yarn, I’ve always remembered The Sign.

Autism nibbles away at your Sign in sometimes little and sometimes big ways each and every day.

Josh didn’t stop having toileting accidents until he was fifteen or sixteen. I don’t recall the age exactly, and that’s by choice–some things in our transition to adulthood in autism I choose not to retain in a brain that is already overflowing with sometimes useful and sometimes utterly specious junk. Maybe you can relate.

People who don’t live the autism life cannot conceive of what it is like for those of us who do. My beautiful boy became 6’4″ sometime after puberty; taking Josh into the ladies’ room at McDonalds to help him change his pants was something that always attracted a lot of attention. First people would look at Josh because he was soooo tall, and soooo good looking. Then they might notice the backside of his jeans were dark–at least, I was always sure they did. And then a piece of The Sign would flutter to the ground.

In those days we always traveled with a duffle packed with extra clothes and underwear, so there was no such thing as traveling light. (Other mommies of teenage boys don’t have to do this. Why me? Rrrip, flutter.) Into the ladies’ room, and then into the handicapped stall, where there was enough room for us both. Ladies in the bathroom would be startled, but more often than not, in Maine, kind. They caught on. Something wrong with the kid. (Rrrip; flutter.)

Thankfully, Josh only wet his pants. The idea of managing alternatively soiled BVDs was more than I could bear; yet, like you, if that was the new normal, I would have done it.

This toileting challenge extended into our home, of course. Josh wet his bed at night, so we availed ourselves of the adult pull-ups our health insurance would pay for. (Insurance will cover it if the child is not toilet-trained by age three. Rrrip.) Josh was only allowed to wear these prophylactics at night though; we’d tried setting the alarm every two hours to bring Josh to the bathroom at night, and when that didn’t work we stayed up all night right next to him to see if we could sense when he was going to pee to head that off. Eventually we realized we needed to sleep, so we capitulated to the nighttime pull-ups. Mattresses are expensive, and even the heavy-duty zip-on plastic mattress covers we bought (Rrrip) were no match for Joshua’s superhuman capacity nighttime bladder. But each time I picked up these adult diapers from the pharmacy, and the plastic mattress covers that crackled whenever someone sat on the bed to lovingly kiss this child goodnight, my heart ached. Other mommies of teenagers don’t have to do this.

God’s will be done. It is what it is. I love my boy to pieces, but I don’t have to like these things.

During the day, Josh would wet his pants, which dribbled. At home we owned the industrial model carpet cleaners, one on each floor of our home, since the contraption was heavy and awkward to lug up and down the stairs. I was loathe to use the pull-ups during the day, since it seemed like admitting defeat. We will win this one, I insisted.

Don’t get me wrong–Josh was making progress. Some days were utterly pee free. Others weren’t. It was the off days that nibbled at my Sign, and at Steve’s.

What else could we do? The first thing The Engineer did to make this situation more palatable was to replace the carpet with linoleum in the boys’ bedrooms, the hallway outside them, and the playroom. I know, not a choice HGTV would make in home design, but as someone once said to Steve (and I would like to kill that guy for this), Function is Beautiful.

(In point of fact, function is usually not beautiful. Function is function, period.)

Our perseverance on toileting was wearing thin. Steve figured by doing some environmental engineering, we could make the consequences of Josh’s toileting accidents less punishing to ourselves and our home, and therefore Stay the Course. We’d learned enough applied behavior analysis to be dangerous by this time. While we probably wouldn’t yet describe the work involved in cleaning up after Josh as undue “response effort” correlated with Staying the Course, we knew it sucked and ate at our Signs. Mopping up linoleum was far easier than managing the carpet, and much better positioned for odor control and disinfecting.

We have a big house, but only two bathrooms, one on each of two floors. We did understand “response effort” enough to figure that maybe finding one of them when Josh had the urge to pee was too much work for him, or that our bathrooms were so discreetly positioned in the house that the visual stimuli (Oh! A bathroom! And a toilet within! I think I’ll pee!) were too far and few between for him. So we began investing in commodes.

If you’ve never seen a commode, let me describe one to you. Typically there is a toilet seat mounted on a metal frame. The frame has four legs, and if you buy the deluxe model, the toilet seat has a lid (we got the lid.) Under the toilet seat hangs a plastic pail. Once used, the pail requires emptying.

We were all over the idea that making the toilet readily available was a good idea, so we bought four commodes: one each for Josh’s bedroom, the playroom, Jason’s room (in case Josh was visiting), and the living room. (This was the phase of the Autism Life in which we did not have visitors.)

And it worked!  Glory to God, Josh started using the commodes, even at night. Wonderful! In fact, we could leverage this success by eliminating another problem we had.

Josh loved playing in water, or anything that seemed like water to him. That included the bathroom toilet, and running the water in the bathtub to splash all over the room. Sometimes Josh would get in the tub to play, and sometimes he wouldn’t.

The solution to preventing Josh from playing in the toilet or flooding the bathroom when we weren’t looking was to “child proof” the bathroom by locking it from the outside. Obviously this is contraindicated if the whole idea is to have Josh find using the toilet so much fun and so easy to do! but with commodes abounding, well, we figured we got that beat. Steve engineered a mixture of chains and hinged tabs on the outside of our bathroom doors that increased response effort sufficiently to discourage Josh from trying to figure them out. Jason, on the other hand, could manage them, so no major harm there. (Our speech therapist Mark Hammond once commented that you could always tell when the Perrys were home, because the bathrooms were locked on the outside, and the doors to the great outdoors were locked from the inside.)

So what do we know about behavior? I swear Josh has an unmeasurable superior IQ, because he was able to find a functional equivalent to toilet/tub splashing that Steve and I had not considered: the commodes.

Oh, the heartache when we realized Josh was playing in the commode pee. Now his pants were dry most of the time, and we no longer needed the nighttime pull-ups. It was enough to make me skip with glee! But if we didn’t empty the commodes fast enough, they became another play station in Joshua’s day.

Steve, of course, engineered something, and I have to say, it was brilliant.

1. Buy a five gallon plastic pail.
2. Drill multiple holes in the commode pail.
3. Place new five gallon pail under the commode pail, concealing the original commode pail within.

Pee now drains from the commode into the pail below, where the sight of it does not serve as an establishing operation to play in the pee.

It worked.

If you have younger kids with autism, or maybe just one, you may think the hardest times will never pass. But surprisingly, they do. Slowly, we thinned the availability of the commodes. We brought them to the special school in town, but after three commodes they said they had enough. We had one commode left, and the day finally came where we could bring it to the dump.

The guys who run the dump in Georgetown get very irritated when we call it a dump, so out of respect for them I will concede it is technically a Transfer Station. In one corner of this acreage in the woods is a pavilion with a roof and no walls, a marketplace of used goods we locals refer to as The Mall. Dump-goers at the transfer station keep a keen eye on The Mall. The etiquette is that one does not make eye contact with the donor of merchandise left at The Mall; nor does one confiscate the merchandise while the donor is still on the premises. This results in a bit of tense hyper-vigilance, because if you want the newly deposited item, you have to appear disinterested until the donor leaves, but browse warily in close enough proximity that you can snatch the product before anyone else when the time comes.

Our commode was perfectly fine. We’d kept it clean, and we’d bought the deluxe version. Many Georgetown residents are retired, and someone, we reasoned, would love a high class commode to make life easier. We put the commode in The Mall. On this particular day, no one was around.

As we were walking away toward the car, Steve got That Look in his eyes. It means trouble. He spun around, went back to the commode, and removed the five gallon pail, leaving only the smaller one hung beneath the toilet seat—the one with the holes drilled in it.

We scampered away like two thieves in the night, wondering what The Mall Shoppers would think.

We couldn’t stand the suspense. Later that afternoon, we checked out The Mall—and the commode was gone!

Next Saturday, however, it was back. We actually got to watch it disappear again (by now no one knew who the donor was), but then it was returned again. And so it went for a few weeks.

One day, though, the commode never returned. Maybe the Transfer Station guys got sick of it, maybe someone finally figured out to get a new pail. We don’t know, and frankly it’s been a fun distraction to keep wondering.

But no matter how you look at it, we engineered our way through toileting! And you can too.

Dedicated to my colleague and mentor, Ray Nagel: Thanks for the kick in the pants, Ray 😉