VOICES FROM THE EDGE: WE'RE ALL A LITTLE LOONEY TUNES

Our family owns no less than eight versions of Monopoly. Back in the day when Lost Boys frequently camped out in the living room overnight and Bonnie brought home potential suitors, Saturday night Monopoly was a given. It’s been a while since we’ve played, so it was a pleasant surprise when Allen asked last Saturday if Ron and I would like to play Looney Tunes Monopoly after dinner. “So we can all laugh,” he said. It sounded like a plan.

Allen has spent a great deal of the summer working on social skills and acceptable public behavior. I knew that the planned game was not about winning but about conversing and having some family time. I explained this all to Ron as carefully as I could. “Remember,” I told him as I set up the board, “it’s not about who wins.” Ron nodded his head; he loves Allen, of course, but I’m the one who does most of the parenting for our adult son who lives on the ASD spectrum.

If you’re not familiar with the Looney Tunes version of Monopoly—and I honestly don’t know anyone other than us that has this version—the game pieces are cartoon characters and the board locations are cartoon shows. The game uses “laughs” instead of money. Allen and I were doing our best to provide the requested number of laughs for rent. And Allen was having fun, making silly comments about the characters, using Wil E Coyote’s figure as he ran around the board. We had properties spread all over the board.

For Ron, though, the game was a different story. He concentrated all his energies on acquiring the railroads—in this case Witch Hazel’s broom rides, Wil E Coyote’s Delivery, Martin Martian’s Taxi, and Acme Rockets—which cost each of us $200 laughs—all of our GO money—when we landed on the spaces. He also invested all he had into three board properties, amazing gigantic hotels and constructing what we called “Fear Street.”

I, part mother and part prognostic, saw where this was headed. I whispered to Ron that he should consider diversifying, making some trades and some deals and spreading things out. He said, “I’m doing fine!” and took another $200 from Allen.

“The point is not winning,” I said to my husband when Allen got up to get a soda. “It’s having fun.” Ron nodded at me. But a nod doesn’t mean one is paying attention.

It wasn’t long before the inevitable happened; Allen rolled a 7, which would put his Wil E Coyote squarely on Ron’s Rabbit Seasonings, costing 750 laughs. Much more than Allen could manage. I tensed myself for the meltdown.

Which didn’t happen. Instead, Allen surveyed the situation on the board, calmly placed the dice in the center of the board, and said, “I don’t want to play anymore. It stopped being fun.” Then he walked away.

As Allen left the kitchen, Ron turned to me and said, “Is it my fault?”

And I started to say, No, of course not, but I changed my mind. Ron is Allen’s father. While I bear almost all of the responsibility for aiding Allen in his quest to be an independent adult, his father should at least not upset the apple cart.

“Yes,” I said to Ron. “It was your fault. Because it wasn’t about winning. I made that clear to you and you weren’t listening.”

“It used to be about winning,” he said.

“Times change,” I said. “Needs change.” I motioned to the wheelchair he was seated in. “Life changes.”

He nodded—because that’s what he does—and wheeled himself into the living room to watch TV.

I was putting away the game board and pieces and being proud of Allen for the way he handled his disappointment --he didn’t get angry or dislodge the board or storm out of the kitchen—when my son appeared again and started piling up the cards.

“I’m sorry,” he said. “I just couldn’t play anymore because it got to be stressful. Not fun.”

“That’s okay,” I told him. “I’m happy you didn’t get angry, you just stated your feelings and walked away.”

“Well,” he said, “that’s what you’re supposed to do when you’re mad.” He picked up the figure of the Tasmanian Devil and ran him around the board. “I don’t like being mad. Things got too serious. But sometimes, it’s fun to be looney.”

We could all use a little less mad, a little more looney. 

Voices from the Edge: If I Had a Hammer

If I had a hammer,
I'd hammer in the morning,
I'd hammer in the evening,
All over this land,

Ever since Allen had put on a new doorknob two weeks ago--all by himself, I might add--the front door had not shut properly. Every night, he slammed and banged to get the door to shut and lock, and every morning it took all my strength to pull it open. But it wasn't until Friday that I realized the doorframe had pulled away from the porch wall; all of our banging and tugging was only pushing the frame farther away from the supporting wall.

"We need a hammer," I told Allen. "So we can pound the frame back in place."

He thought for a moment and I, with the wisdom gained from years of parenting this adult who lives on the upper ends of the autism spectrum, waited. And waited. "Well, maybe," he said. "I'll see if I can find the hammer."

Progress. We have a variety of tools, but I have given up on bringing any order to the basement while Allen works on his robot project, so tools that I need frequently--such as hammers and screwdrivers--are kept in the bottom drawer of the file cabinet. It wasn't long before Allen returned with the smallest hammer he could possibly find, a ball peen probably snatched from his metal work downstairs.

"I really think it's too small," I said. "Nah," he said and shrugged. "A hammer's a hammer."

Okay. I guess. So Allen and I went outside and I showed him just where he needed to pound the doorframe back into place. He gave it a few whacks. Nothing happened.

"Harder," I said. "Put some muscle into it!" Again, he gave it a few whacks. Nothing.

"Not going to work," my son told me. " If I hammer any harder, the top of the frame will break. See?" and he points to the top where I can see absolutely no discernible cracks. "You'll have to hire someone," he said sadly.

I'd hammer out danger,
I'd hammer out a warning,

Once Allen has his mind made up, it is very difficult to change. But I was determined to try. Anyone who knows me knows that I really hate to hire someone to do something that Allen or I can do ourselves. My father, a whiz with any hand tool known to man, taught me to change the oil and the tires on a car, rewire an outlet, and hammer without hitting my thumbs.

"Come on," I told my son. "We just need a bigger hammer."

He hesitated. "Well, there is my sledgehammer. But it will probably break the door. Then you'll really be mad! Sorry." and with that he was off to the basement, where the various parts of his robot currently live.

I studied the situation a few more minutes. I wasn't really strong enough to push the frame back in myself, but a sledgehammer packs a wallop. I'd last seen it on the back deck. Resolutely, I dragged it around to the front. If I could manage to lift it, it just might work.

And it did. It took a few whacks and a few tries before I hit my mark, but I accomplished the task and the frame was solidly back in place. I wished, not for the first time since Ron's car accident, that I had a husband that could do these things and didn't need to figure out so many things on my own. I wished there was someone around to be a mentor to my son, someone to show him the things a dad should teach a son. But, at the same time, I was grateful to my dad who'd taught me basic home maintenance skills, and my youngest son who did his best to help when he could.

The frame was in place and I was preparing to drag the sledge hammer around back when Allen reappeared.

"I thought it over," he said. "And I think you're right. We just need a bigger hammer." Allen's delayed response is not at all unusual for those on the spectrum. Since his brain has developed differently, the cells are packed tighter and the stems are shorter. It takes longer for him to process things.

"Too late," I told him  and was sorry I hadn't waited a while longer. I did a Vanna White pose, pointing out the fixed doorframe.

He spied the sledgehammer at my feet. "You used my sledgehammer?"

I nodded. "Yep. And it worked." For a moment, I could not read his expression. Was he upset I'd gone ahead without him? Mad I'd used his tool?

Finally, he grinned his special Allen smile. "So," he said, "since you used MY sledgehammer"--and the emphasis is his--"it's like I fixed it. And I want the credit for it." With that he easily hefted the item and carried it away.

I'd hammer out the love between
My brother and my sister
Ah uh, all over the world.

If you are keeping score here--and I guess Allen is--it's five him, three me. But at least my door is fixed. And Allen, who maybe only had a minor contribution to the event, has defied the odds by being in the minority--only 6%, according to recent government data--of autistic adults who hold a fulltime  job.

Heck, let's put another one in the Alen column. And maybe one for me as well. We're doing okay.

Voices from the Edge: Comfort Zones

It is Thursday and I need to be at a class in half an hour, but Ron has taken the car out to the drugstore and is not yet back. I tap my foot, both in impatience and indecision. Allen is home from work; I could ask him to drive me.  As his Thursday schedule stipulates, he has fixed supper for the family tonight--even now the sliced turkey and gravy with their watery mashed potatoes sits congealing in a casserole dish on the kitchen table--and gone upstairs to rest. Interfering with Allen's schedule or asking him to change it in any way is taking a big risk. I never quite know how my autistic adult son will react. In the year since his diagnosis, I've learned a lot about living on the edge of the autism spectrum. With some help and support from Occupational Vocational Rehabilitation, he's learned to hold down a full time job and interact in limited social situations. But it all takes a lot of energy, and early evening naps are now an ingrained habit.

The clock ticks away and I decide to risk it. One tap on his bedroom door, one softly-voiced query. So I make the move, and he--astoundingly--answers. "What?"

"Dad's not home yet," I explain. "And I need to be to Kingswood in half an hour. Can I borrow your car? Or can you take me?"

There is a long, long pause. I see the second hand on my watch spin around the circumference twice, but I do not tap again. One does not rush Allen, who needs time to process and time to answer.

"Just a minute," he says. It is good news. He has not ignored me nor gone back to sleep. True to his word, he appears with his sneakers in hand, dressed in his flannel pajamas with a sweatshirt pulled over his head. "I'll take you."

"Great!" I say and gather my two book bags together, giving him no chance to change his mind. We make it down the steps in tandem. Allen bargains me into buying him a Monster drink and a pretzel at WaWa. "Sure," I say and we step out into the May evening.

Things are going well. So well that I venture to ask another question. I begin hesitantly. "I know it's not on your schedule..."

He shakes his head. "Then I can't do it." End of discussion.

I try again. "Just listen, please. I know it's not on your schedule, I understand that, but could you possibly do the dishes? I know you cooked and all, but I won't be home until 8:30 and I don't want to face the dishes then."

"I wish I could," he says, "but it's not on my schedule. So, no, I can't." I can picture the schedule on the refrigerator, the elaborate spreadsheet that helps my son function in a world he finds alien.

"Just this once," I cajole. "I do things that aren't on my schedule all the time. Can't you--just this once--be flexible?"

Even as I say it, I know it is wrong of me to expect a positive response. Allen does not stick to his schedule with engineering precision because he wants to; it is because he needs the order it provides to him. As Therese Jolliffe--a psychologist with autism--observed, the routines of autistics introduce order into the confusing reality of life. The carefully structured weekly map keeps unexpected changes, which have the potential to throw Allen into a meltdown, at bay.

And I have already asked Allen to step outside of the safe schedule today. He is in the car, in his pajamas, ready to drive me to the class I need to teach. He is already outside his comfort zone. I am, I realize, pushing my luck.

But I push a little further anyway. "I understand the need for your schedule, " I tell him. "I really do. But sometimes I need a little more help than your schedule permits. Just once in a while. That's all. I do things that aren't on my schedule all the time."

My son shakes his head a bit sadly. "I wish I could," he says. "But I'm not like you. We just have to deal with it. I do the best I can, Mom. Honest."

"I know. Really, I do know that," and my mother's heart aches for this child who lives his life in a world foreign to him. "I like you the way you are. Schedule and all. Thanks for taking me. I know you had to change your routine for me."

He grins at me, his blue eyes sparkling. "You are I are real different, Mom. But I like you the way you are, too. And I wish--I really do--that I could be more like you."

I reach for my seat belt to fasten it in place, distracted by the two hours of class time ahead of me and the congealing casserole the cats are probably feasting on as we speak. "And how am I?" I ask, pretty sure that controlling and demanding is somewhere on the list.

"Amazing," he says as he puts the key into the ignition. "You are just amazing. And I..." he turns the key and the engine purrs to life," am lucky to have you."