I’ve been in bed for maybe an hour, asleep for just a few minutes I think. And then the scream. My stomach muscles tighten. It feels as though a short sharp blade has been inserted. I freeze but only for a couple of seconds. I need to move. I stand upright in the dark where I narrowly miss the bookshelf to feel ahead for the door. I manage it. Lights. In the hall, I move and I think. This is happening. This is happening to me. Things are getting worse.
I open the door to him lying on his bed facing the wall where there is a gaping hole in the plaster. Not worth fixing when chances of recurrence are so high.
“What happened?” I try. I am aware of the slight quaver in my voice. I must monitor my tone even though my heart rate has doubled in the last sixty seconds. He flips over and throws out an apology followed by the expected promise to stop. He sits up and in a confrontational lurch up and forward, he closes in on my face. Maybe twelve inches of space to work in.
He widens his eyes to examine my facial expression. With effort, I remain as blank as possible. If I betray my anger, my frustration, my fatigue, this confrontation will worsen in seconds.
“Why, Eric? What could possibly be the problem now?” Anger has leaked, but only a bit, so he lets me off the hook.
“I’ve stopped now. I won’t do it anymore.” He remains as defensive as ever.
I should stop now. The cards have been dealt. Fold my hand and leave the table but I can’t. The game is on. I hear my internal scream directing me. Confront this. No. Stop now. No more words. It will escalate. You will never get back to bed. He will wake up the whole house. What will he smash?
I grip the door frame in clamp-like fashion, as I listen to him defend his actions. But his own anger is tightening. He turns away, waving his arms while repeating his promises. We have lost our basic connection with each other, which is always the case during these out-of-control exchanges. I recognize it from fights of the long past with my daughters, but much, much smaller in scale. Eric is back to staring into my face at close range as he stutters that, “It was, it was....”
“Yes Eric!” I am only encouraging him to get on with it but of course, my impatience is oozing out. He sees it. He can see it a mile away. I am doomed. “I won’t do it anymore!” he blurts. It is staccato and repetitive. I begin to realize I don’t have much time to control this until everyone else is awake. This is between him and me. I will not accept this.But I must.
He hasn’t answered my question and I begin to take my own advice. It is night time. People like to rest, to sleep at this time. It can be so lovely, so peaceful, I know it can. I love the reliable fact that bed can be a haven, a place I can go to be alone, to think, to sort everything out in my mind. Or operate under that illusion for a little while anyway. Solve all the problems. Know that this isn’t too bad. This is a blip in his life. A bad patch. Another bad patch. So close to the last bad patch.
Let’s play pretend. This will all work out. I try but my self-talk isn’t working tonight. And then I can’t pretend and then it gets huge. This is a gargantuan crisis we are dealing with here. He is out of control. Can this be called frequent behavior yet? This isn’t every night. Maybe the drugs just need adjustment. No, not again. This could very well get worse. Up and down, and over and out. My thoughts are light speed injections. My pure stimulation guarantees no sleep for an extended period this evening. I’ll take something myself. Maybe I’ll go downstairs. Have some wine and read. No, it’s too cold.I’ll make my way out of here first. Eric has accepted my reassurances that I am not angry but that I need him to be quiet so we can all sleep. If he can’t sleep, I tell him to watch a show on his tiny television or get out the iPad.
He says he doesn’t want TV or the iPad or anything else. Naturally. This is also the new normal around here. The peace that DVDs and computer technology used to uphold is long gone. Now, Eric stares at the wall or the ceiling. Thinking angry thoughts. He is finished with the world. He has basically cut it off. There is one final precarious rope keeping him present and it’s attached to me and the knot is unfurling.
As I back away, he looks for more reassurance. “Are you angry?”
“No. Everything is fine. We all just need some quiet now.”
I close the door to his room. Really, it’s more like the door droops off its hinges. He has completely ruined it with repeated slams. I have chiseled out new spots for the hinges too many times now and I need to just give in, buy a new door and reframe the whole thing. But what is the point? Anything new will be ruined. But if I leave it, it will fall off, slam to the floor and then I will be unable to solve that problem on the spot at one or 2 a.m. some other crap night.
This is my problem. This is my life. This is his life. Why can’t it get a little bit easier? I had dreamt of a time when his autism would fade away but its all getting worse. I thought adolescence meant that his gifted qualities would blossom fully. I would be sweeping him off to animation studios in the city where he could intern and eventually get an amazing job that would satisfy his creative inclinations. Each day seems to result in another dent in that plan.
The joke is on me. My wonderful son was born perfect. Everything in working order. My third and final child. He was such a great baby, no problems, super bright, cute, and slept when he was supposed to sleep. Until all that ended with such stark and violent abruptness. When he was three and a half, his words were all finished. The curtains just closed. With communication systems down, he stared at the markers that he carefully lined up on the floor. He was no longer present, because human beings instinctively communicate, don’t they? They reach out to each other. Where did my son go and why did he get sent there?
Of course, I was the same as all the other parents: angry and heartbroken. I’ve read so many books documenting this struggle, mostly by mothers grinding their teeth, weeping but smiling out at the world, ready for the challenge. Because we all know the timer has been switched on. We must be extraordinary parents, consistently and brilliantly, all the time. We must fix what needs fixing before it’s too late. All the research points to the urgent need for action while the brain is still open to change.
I signed up with all the appropriate agencies, propped up by the promise of assistance and expertise. Their clever propaganda manufactured a fairly reliable optimism. All will be well. Wait lists are the first concrete barrier I bounce off. I get up and recharge my adrenaline and hope. I read voraciously, all kinds of stuff that I have no business reading. Academic mire slows my progress but I pick up some important facts. I am an expert,I pretend. I have absorbed all the case studies, spent money I didn’t have on books, more research papers, systems or “kits” to assist learning and facilitate speech. Big, super important and terribly authoritative binders full of instructions, guidelines, rules.
People keep coming to our home. Experts. Remember to thank them and bow down to their awesome knowledge. Thank them for their precious time.And I did. I would have kissed them if it would have helped. But it wouldn’t have, and I just listened and then watched as they tried to work with Eric. He always pushed them away. If he wouldn’t accept these people, why should I? Appointment after appointment. More hope. Less hope. Despair. Fatigue. Anger. Isolation. Hanging onto fragments of joy. He spoke today. He looked into my eyes. Tiny moments that are magnified into significance. My son will recover. He is going to be alright. In fact, he will beat the odds and become brilliant at something. I think it will be art-related. He will. Just wait. He will.
Chronic fatigue. That special fatigue you don’t really comprehend until you have a baby. The haunted days with the newborn, when you don’t think you can possibly become upright again to feed, to change, to hold and reassure. And then you do. Of course, we all pull through that. But with Eric, it came back with the arrival of autism. He didn’t value sleep. He didn’t need it. But he did want company. Please stop screaming.I begged and begged. And later on, I prayed.
A vast number of words in my vocabulary changed meaning. Sleep became a miraculous peaceful break from consciousness; a precious commodity. Desperation became a commonplace state of pure numb despair. I have fought depression all my life and the circumstances around Eric sometimes made day to day life dangerously fraught with bottomless, black thoughts.
Some days were better and more and more of them started to feel okay as the years proceeded steadily ahead. Not brilliant but passable. So much of it always had to do with smiles and a few words from Eric. Once you have some communication, some connection, you become thirsty for more. Improvement was just peeking through the clouds. I became more certain, more insistent with doctors and school personnel and special needs co-ordinators. We were beating this thing that seemed to relentlessly act like a vacuum sucking away what Eric had to share. Pull it back. Time. Patience. Love. Insistence. Repetition. He coped with his school days garnering reasonable results with the added bonus of his blossoming artistic skills.
I became someone I absolutely wasn’t or hadn’t been ever before. I scheduled meetings that I called “team meetings,” a term I somewhat flippantly stole from the Board of Education vocabulary. I had the nerve to gather all these experts every couple of months to discuss Eric’s progress, re-prioritize approaches to his learning and celebrate any new developments. I am generally shy, too passive – meek, I guess you would have to say. Not in these meetings. I heard myself running these sessions with authority where I had none. I spouted their beloved jargon that was graciously accepted. This was their communication system. We did work as a team and came up with some pretty useful methods. At times, I could hear myself begin these meetings, relying heavily on my notes but in an improvisational manner, coming up with what was at times an impressive presentation. Use lots of smiling, lots of humbleness, lots of compliments whereever they could be applied. Throwing around positivity facilitates the action that I needed from these people.
By the time Eric left elementary school at thirteen years of age, he was well known around the school. He was the kid with that autism thing but he made really cool movies on the computer. Even the Board office staff heard whispers about my Eric. He entered high school to join a small class setting for special needs. His teacher was incredible. He brought out the best in all his students. My meetings with the school became less necessary. For me, they became something to look forward to. I get to hear all kinds of positive things about my son. I can’t wait.Then, he started using a program to create social stories on his iPad. He made quite intricate line drawings: small characters that would represent a particular student’s challenge with a solution scenario at the end. His animation of people was exceptional in that they displayed astonishing facial expressions. There was no doubt about the emotions of these characters. That was when Eric started to visit the young kids with autism at a nearby school and designing personalized social stories for all of them. I had great hopes of his eventual career in animation or illustration or film as he could create claymation shorts using characters he already knew like Wallace and Gromit. It was a heady time for me, those first two years of high school. And then it all went away. Again.
• • •
I want to send a humorous text to a friend and I’m trying to remember the exact quotation from a show. I look it up on my phone to see if YouTube has it and it does. I am new to this cell phone thing. I was one of the slow adaptors. Now, I am one of the most thrilled to own a phone. I am inseparable from it. Music at my fingertips. Imagine. My new best friend.
The clip from a favourite show comes up and I actually laugh out loud. For reasons as yet to be determined, Eric cannot cope with comedy shows and the audience laughter. It could be partly the fact that the jokes don’t translate into ‘funny’ for him. Mostly, it is probably the laughter from the audience. It is loud and inexplicable to him. He hears my phone even though he is in the next room. He screams. I am angry because I am being interrupted and I can’t figure out why he is regressing and anyway, I hate screaming. And maybe I’m not a very nice, patient Mum anymore. I go to him quickly, adrenaline-driven once again.
“What is the problem?”
“What is the problem?’
“Okay. I have turned off my phone. No more laughing. Please just make your lunch and go back upstairs.” I am aware that I have transformed into this ugly person. I know to stop but forget how to control that function.
“I’m not going to have dinner tonight.”
“Why? Because you got angry?”
“No. I’m just not going to have dinner or have a bath.”
“Eric! That is not a solution for your anger. I told you that it is okay to get angry. Everyone gets angry, but you need to bring it down from a 10 to a 5. Okay? Try. Just try to bring it down. Tell me what is annoying. Talk it out with me or anyone or yourself.”
“I’m not angry. I’m just not going to have dinner.”
“Why? It’s five hours away. I’ll ask you if you’re hungry then.”
“More whys! No more whys!” Escalating.
And I escalate right along with him. Stop yourself.I don’t listen to my own advice. Look at the throbbing irony, would you? Control yourself!I don’t hear. I am gone and so is he.
“Eric. I am trying to help you!” My voice is quavering. His eyes roll and he turns away. “Okay,” I concede, “Go upstairs. No bath or dinner. That’s fine.” I am done with this.
He knows that I’m full of shit so he gets angrier and turns away. Suddenly, he turns back to close in on my face and look right into my eyes.
“It’s because I’m angry, isn’t it?” Screaming. The entire neighbourhood has heard this. I don’t care but I am aware of this as events become slow motion. I could feel the damage to my ear drums this time. I can still feel the vibration. I wonder how the disbelief on my face looks as I feel my way through these moments. Slowly. This is not over.
He swings both his strong arms up to his head. He makes fists and starts slamming himself on the side of his skull. That has got to hurt, not that he would be aware of this yet. Over and over. First one side, then he switches to the other side. I drop the book that I forgot I was holding and rush over to his face. I use all my strength to capture and pull down his arms.
“You will not hit yourself!” I’m as loud as he was. My throat strains to keep up with my demands. I am roaring and so is he. And his strength is incredible. It reminds me of the seriousness of the situation but doesn’t stop me. I may be a bit bruised later but that’s all. As I have successfully intercepted his pounding, he stops. So far, he has never hit me and so he stops. He can’t go on with me stopping him. He ceases his attempts and I step back.
It’s all over just as quickly as a seizure. Well, maybe not that quickly. I don’t know. Anyway, we’ve had a few of those seizures lately. So, now, I can worry about him going upstairs and having a seizure on his own. They are triggered by super stress and here we are, no going back. Think about the pills. What a selection.I could up the dose on “xxxx” to 2 a day but that stuff is a bit scary. Are we at that level of crisis yet? Make a decision.Maybe just give him one “yyyy” just for today although that doesn’t seem to work as effectively anymore. I have repeats on quite a selection of drugs so I can make these choices. I am the all-powerful pharmacist with the ability to start and stop behavior and feelings. It should be that simple anyway. Getting through to Dr. N will take forever, maybe a week for an email back. Same with the psychiatrist. I haven’t got time for that game today. So just go ahead. Assert your expertise.
What kind of Neanderthal life am I leading here? We are being reduced to these physical and verbal nightmares. There is no telling what comes next. He has fallen back from his proud label of high functioning autistic child to that of young adult with autism, ulcerative colitis, severe anxiety and depression and his grand finale, epilepsy. All this crap unearthed in a space of about 18 months. He is hooked up with six hospitals and too many doctors to make any sense of the “whole” Eric. I can persuade him to attend his last year of high school using great psychological intrigue maybe two or three times a week only. He hates it passionately for reasons I have yet to comprehend. I just want to get him out of there. Find a lifestyle that won’t antagonize. Then what?Wait for a miracle? Pretend to have optimism and sometimes believe in it. Wait for the screaming to stop.
About the author
Kathleen Langstroth has been published in The Radvocate where she was runner up in the So Say We All Literary Prize. Online, she can be found at Cold Coffee Stand, Submittable (guest blog) and The Galway Review. She was shortlisted for the Fish Short Story Prize.