Voices from the Edge: Handle with Kid Gloves

It was the White Rabbit returning , splendidly dressed, with a pair of white kid gloves in one hand and a large fan in the other: he came trotting along in a great hurry, muttering to himself as he came, "Oh! the Duchess, the Duchess! Oh! won't she be savage if I've kept her waiting!"

—Lewis Carroll, Alice's Adventures in Wonderland, 1865

Allen has pulled a shopping cart from the corral and tied our market bags to it. He adjusts his face mask and prepares to push into the market. I stop him with a touch on his arm.

“Remember what I said about the gloves?” I nod to the heavy gloves he has been wearing for the last two days as we worked on the yard, clipping bushes and clearing up the debris from many winters of neglect.  

He shakes off my hand impatiently.  “What?”

I put on a smile. “I asked you not to wear those work gloves in the store because you’ve been using them in the yard. They are full of dirt. We don’t want to spread anything.”

His outburst is instantaneous. “Then I can’t go in!” he says loudly. A couple of people turn in our direction but after years of mothering this autistic adult, I know it best to just ignore them. “I need to protect my hands! The CDC says so because of the virus!”

I speak calmly, my mind exploring alternatives. “You could put plastic bags on your hands, the ones they have for the vegetables.”

But my son is adamant. “NO! I have to wear gloves! I have to!” I fear we are bordering on a meltdown, the last thing any mother wants in a public place. And at 6 foot 4 inches, Allen’s meltdowns can make others wary. 

“Okay,” I say to him. “We’ll just go home and get a clean pair of gloves.” He is mollified for a moment but becomes agitated once back in the car.

“I just have other things to do!” He says. “I don’t need this!” He is taking short breaths, hyperventilating, and begins a series of grunts and groans, verbal stims.

“I know,” I say as I pull out of the parking lot. “It’ll just take a few minutes.” I keep my tone light. No pressure. All is well. The more I believe it, the more Allen will, too. 

He is silent for a few minutes, slapping his hands against his thighs, but his breathing is becoming even. I can almost feel the fury leaving him as he sinks back against the seat.

We are two blocks from home when he speaks again, his voice quiet and regretful.  “I hate when the beast in me comes out. I don’t like it at all. I don’t like to act that way.”

“I know,” I tell him. “None of us like to get mad.” As Allen has gotten older, he has gained more control of his meltdowns. They are now few and far between.

“I really try to have good intentions,” he tells me. “Like helping you shop and do the yard work. But then things go wrong. And I feel like a beast. And I just want to roar and I feel  like I could just, like, eat the whole world.”

Lately, Allen has been able to verbalize his feelings more clearly and be open with them. I am proud of how hard he is working at it.  “But you knew how to control it,” I tell him. “ You knew what the problem was and you told me.”

“And you solved it,” he said.

“No,” I tell him. “You solved it. You knew what you needed and asked for it.” I shrug. “I just happened to be smart enough to buy several pairs of gloves.”

We pull up to the house. I take a moment to admire the work we have been doing. The overgrown rose

bushes are now trimmed, the ground beneath them covered with mulch. The bushes on the hill are sprouting the little yellow flowers that were hidden under dead leaves. It has been a long, long time--years--since I have had time to give to a garden. I wonder briefly what Ron would think of the outside now.  I go onto the porch to get a clean pair of work gloves, passing the little stone I have placed by the front steps. “ Goodbyes are not forever, goodbyes are not the end. They simply mean I’ll miss you, until we meet again. “ I return quickly  to the car and hand the gloves to Allen. He puts them on and seems happy with them. 

“You can use these for market gloves,” I tell him. “We’ll wash them each time.” He nods and turns his hands

over, stretching his fingers. Sensory issues are a problem sometimes, but the gloves seem to be passing

the test. 

Voices from the Edge: Better than Zombies

3/4/17

It is 6:30 am on Saturday morning and I am trying not to move, least the cats see me twitch and pounce, demanding breakfast. The door flings upon and Allen barges into the room, loudly proclaiming: "I STOPPED BREATHING LAST NIGHT!!!"

It is early and I am still on the edge of sleep, so I ask the wrong question. "How do you know you stopped breathing?"

This incenses my son. "THAT'S your question?" he asks. "Shouldn't the question be WHY did I stop breathing?"

I try again. "Okay. Why did you stop breathing?"

"I don't know!" he shouts and slams the door. He stalks into the bathroom where he carries on an argument for twenty minutes with whatever forces were controlling his breathing. It is clear to me that he is now breathing pretty well.

I, on the other hand, am holding my breath. Cats at my heels, I creep downstairs where Ron has been watching some early sports something or other. I click off the TV. We both listen to our son ranting in the shower. Words like "manipulation" and "television" are shouted again and again. Allen slams cabinets as the meltdown continues and the cats jump up on the couch with me, seeking refuge under a blanket.

"This is our child," I say to Ron, "and there is so little we can do." Since a hospitalization five years ago when he had a severe allergic reaction to Tylenol, Allen has abhorred anything to do with doctors or medications. At this moment, I am unpleasantly reminded of Ron's early struggles with bipolar disorder, days when our walls and our furniture suffered.

" I should be good at this by now" I say. "I've had a lot of experience."

"Guess God knows you can handle it," says my husband. It may be true but after twenty years of living with mental illness, I am exhausted.

I know this episode, like all autistic meltdowns, is out of Allen's control. As Ellen Dalmayne writes in her blog "Autism Rights Together," it's never just one thing that causes the total loss of control that characterizes the autistic meltdown. As Allen has gotten older, he has gained more control over these upheavals, but we have not abandoned them altogether.

"Maybe he'll never be able to live alone," I say to Ron. He nods. "Maybe our dream of a little retirement condo is just a dream." He shrugs. We've been altering dreams for years.

Allen, who was labeled early in life as learning disabled, didn't receive the diagnosis of autism, more specifically Asperger's syndrome, until he was a young adult. It made sense, though, and explained some of the nuances about him. According to PsychCentral (2017), meltdowns are caused by faulty sensory perceptions. The overload of stimuli is so great that the brain cannot balance out all the senses. There is also the issue of mental impairment. Like many on the ASD spectrum, Allen is "low normal" on the intelligence quotient scale. He is "high functioning" and manages to hold down a full time job, but processing input overwhelms him.

The banging and the shouting have slowed by now and I hear the bathroom door open. I wait. We have come to a pivotal moment in this meltdown. Either Allen will now blame me for his inability to breathe last night or this thing--with a power all its own--will wind itself down. He continues to mutter as he stomps down the hallway and stops at the top of the steps, continuing his litany of complaints. But the tone is quieter. No walls are banged.

As Ron and I wait it out below, I recognize that this is, as Dalmayne says, "not just about a sandwich." Allen has had two other issues this week that were not within his careful control. On Monday, he thought--mistakenly-that his SSA check had been lost. And on Friday, he got a bill for his car insurance with a greater payment than usual due.

My instinct tells me that Allen did not really stop breathing last night, but lack of proper breathing can, indeed, precede a meltdown. He has learned to "stop and breathe", but it is not a technique that is working right now.

One step at a time, Allen enters the living room. "It's all television's fault, you know." I don't know, but I nod anyway. At least it is not my fault. "Television wants to turn us all into stuffed animals." To myself I think, at least that's better than zombies, but I keep my thoughts to myself.

He stalks into the kitchen and opens the freezer. I  hear the crinkling of a wrapper and the door of the microwave open. Allen turns on the kitchen faucet and comes back into the living room. "Going for coffee," he says and leaves without slamming the door.  Progress.

"Why'd he turn the sink on?" asks Ron. I shrug and get up to turn it off.

"No idea, "I say. "Maybe  it drowns out the voices." We both laugh. We have survived another meltdown. But out in the kitchen, feeding the cats who have come out of hiding, I recognize that I do know why he turns on the faucet after a meltdown. It's about control. A meltdown, for a child or an adult, forcefully wrests away carefully contained control. In Allen's case, he spends the work week trying to decipher social cues that are foreign to him. There are many things in his life over which he has no control. Particularly in the throes of a meltdown.


But he can turn on and off the sink.



Cats fed and a cup of tea in hand, I rejoin Ron in the living room. He heaves himself up onto his walker and makes his slow way to the stairs. "Going back to bed," he says. "Too early for a Saturday." And it is too early, but there will be no more sleep for me. I will sit on the couch and wait for Allen's return, listening for repercussions. Eventually I will go up to my office and grade student essays, remaining on high alert while Allen will undoubtedly go back to sleep, the usual aftermath of a meltdown.

At the steps, Ron turns and looks at me. "Before the meds straightened me out, was I this bad?" he asks.

"Worse," I say cheerfully. "Much worse."

He smiles and heads up to bed. "You are good at it, you know."

And I suppose I am. Practice makes perfect. Just then I spy Allen, WaWa coffee cup in hand, coming up the walk. I hurry to the kitchen and turn the faucet back on.

I guess I am pretty good at it.

 

VOICES FROM THE EDGE: The tools we gather

We gather our tools, one by one,
Reminders of our heritage, of our homes.
We keep the ones we need, tucking them into
Our own tool belts.

It is a Thursday, Allen's night to provide supper for us. He has made a call to Pizza Hut and placed the order for the Triple Treat Box. He has given himself enough time to get there and I am looking forward to a night out of the kitchen.

But the front door bangs open with a force only a tall boy can generate and Allen stalks across the room. His hands are empty. "No pizza?" I ask, but Allen doesn't answer me. He pounds up the steps, slams his bedroom door, then stomps heavily around the room.

I pick up my knitting needles and wait. There is an answer to why Allen is empty handed and eventually, when he is ready, he will share it with me. In the meantime, I cast on 36 stitches to begin another child's hat for charity.

My grandmother gave me knitting needles, 
 a connection to the homely arts.

After a few moments, another door is slammed. We have, thank God, an old house with solid doors. I hear Allen muttering to himself, working things out in his head. I have knit five rows on the new hat when Allen pounds down the steps. Now he is ready to talk.

"I'm never going to Pizza Hut again," he says.

I catch the yarn with my needle. "Why not?" I ask calmly. Allen is on the verge of a meltdown, but an aura of calm often averts one.

"Got my order wrong! No, lost the order! And they made me wait--even though I called--and they charged my credit card but they didn't give me the order. So I left." He takes a deep breath.

My mother gave me the patience
 of her vanishing Powhatan tribe.

I continue knitting. "Why did you leave?" Allen has taken a second deep breath. His fists no longer clench and unclench.

"I was getting angry," he says. "And I don't like feeling angry. So I left."

I nod. Anger makes Allen feel out of control. For someone who lives on the autism spectrum, control is vitally important. "You made a good decision," I tell my son. "But now that you're not angry anymore, what should we do?"

He shrugs. "Don't know. I paid for pizza we didn't get."

"Right," I say. "Are you willing to let it go?" He thinks for a moment.

My father gave  me a tire jack and jumper cables,
so I could rescue myself.

"No," he says. "That's not right. I should get my money or my pizza. But," he stares at me, "I'm not going back there."

"Okay." I put my knitting aside. "How would it be if I called the manager?" The decision here needs to be Allen's. He was in a situation in which  he lacked control. I want him to regain that control.

He nods. "Okay." So I pick up the phone and dial, asking for the manager. Courtney remembers Allen clearly and apologizes profusely.

"We're real busy tonight," she says. "And somehow his order got lost. But it's here and it's ready if he wants to come back."

"That's  not happening," I tell her. "And I know you don't deliver to our area."

"But I could bring it to you myself," she says. "I can be there in ten minutes."

My brother gave me companionship
and a childhood of summer days

And ten minutes later, she is at our door, pizza boxes in hand. "I voided your son't credit card," she tells me. "There's no charge for these. I'm just sorry he was upset."

"Thank you," I tell her as I take the pizzas. "Just so you know, in case this happens again, Allen is autistic. When things don't go as planned, he loses control."

She nods knowingly. "I thought so. My sister is autistic, too. Tell Allen he can always come to me." She is off with a wave and a toot of her horn.

I carry the pizza into the kitchen and lay it on the table. Allen gets out paper plates.

"So," I say to my son as we munch on our pizza, "what would you do if something like this happens again?'

"Ask to speak to the manager," says Allen. "Cause she seems to understand."

We gather our tools, one by one, 
Adding them to our belts,
Knowing they are there
To use as we walk our paths.

Since being diagnosed with autism, Allen has had to find tools to help him live in a world he does not understand. And he's just added one more to his own belt.

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."

On the Edge of the Spectrum

I knew it was a meltdown, a total loss of control over his emotions coupled with the inability to make sense of the situation. As a kid, Allen’s meltdowns were more frequent and short-lived; as an adult on the autism spectrum, they are just the opposite: few and far between, but as intense as a storm brewing for days in the open water.

He couldn’t find his driver’s license. He’d taken a load of scrap metal to the junker down in Chester, but he needed the license to get paid. Ron and I were in the back room, painting the walls a peaceful shade of sea-foam  green. I was finally, a year after Bonnie’s departure by marriage, taking back my office. I needed a space for my schoolwork and my writing, a place where my pens did not go missing and my books stayed where I left them.

The storm brewed all the way down 10^th Street and erupted at our door, bringing with it a barrage of motion. Allen came pounding up the stairs, shouting, “Where’s my driver’s license?” He burst into the room where the tranquil sea-form green was already covering half a wall. “Someone took my driver’s license!”

While Allen’s diagnosis of autism is new, I have been his mom for a very long time. Meltdowns—that total loss of control feared by those on the spectrum and those standing on the edge—can be caused by an overload to the senses, too much information given too quickly, emotions, performance demands, shifts in expectations, or frustration. In this case—as with many who have autism—there was more than one ingredient. Waiting for job-training through Occupational Vocational Rehabilitation is hard on Allen, who deals with his special needs by keeping busy. The government works slowly, a word not part of my son’s vocabulary. Allen collects scrap metal to sell as a means of productivity and “the stupid guy at the junkyard” was thwarting what Allen saw as an immediate need.

Allen also suffers from sensory overload, a condition that sometimes causes him to line his windows with aluminum foil and unplug every electronic in the house. While the rest of us cannot hear the low hum of power, to Allen it sounds like a roaring waterfall. The sensory issues sometimes means he shifts sleeping spots during the night, seeking a place “quiet” enough to rest. Last night, he’d ended up in the back room. Boxes I’d carefully stacked up were rifled through and dumped out. No driver’s license appeared.

I knew better than to reason with Allen. His extreme need led to frustration which led to irrational behavior. After a fruitless search, he conjectured that a woman he worked with at Liberty tax had taken his license. Even though I knew it made no sense, I drove him to the office anyway. You can’t fight the forces of nature. 

I could tell, though, that the most potent part of the meltdown was abating. In the passenger seat, Allen’s breathing was returning to normal. Even as we pulled up to the tax office, he was shaking his head and saying, “This makes no sense.”

That’s the main thing to remember about a meltdown; they make no sense to participant or observer. They are triggered, often inexplicably, by an outside force meeting an internal mechanism. Flint against stone. Wind against leaves. The world explodes.

By the time we had driven back home again, Allen had reasoned that a driver’s ID could be replaced and chances were it had been “misplaced” not stolen. The time was creeping onto 2:00PM by then, and I needed to shower and change out of my paint-spattered clothes to take Ron to a doctor’s appointment. While I was in the shower, Allen took possession of my cell phone.

I asked him for it as Ron and I left the house. “You can’t have it,” he said. I asked why, even though I knew better than to expect an explanation. “I don’t know,” he said. “I just need it.” He offered me his cell phone in exchange.

It is both useless and time-consuming to try and make sense out of a meltdown, but I wondered if Allen’s “need” of my cell phone was a way for him to fulfill the thwarted need of the driver’s license, a way to regain some control of a situation in which most control had been taken away. I knew, wise reader that I am, that a meltdown was usually followed by exhaustion. I fully expected to come home and find Allen napping on the couch.

But when we returned two hours later, Allen had painted another wall in my future office, had checked the PennDot web site to see how to get a duplicate license, and had called the “junk guy” to explain the situation. He gave me back my cell phone and went to bed early.

And I stood in the back bedroom for a while, admiring the calmness of the sea-foam green walls.