I entered a story into a local competition in 2012. It was the second time I had done so, and I was delighted to win 2nd Prize. The story is based on my experiences but is entirely fictional.
I am Superwoman…
At least in my dreams I am…
There was a shattering crash then the cat came flying past me as I hurtled down the stairs to the rescue. I had known from the moment his day began that something was going to go spectacularly wrong; I just fervently hoped it hadn’t involved his 4 year old little brother in any way, shape or form. As I rounded the corner into the living room I was greeted with the residue of a hurricane’s war path. Harry was a spinning blur in the centre of the room and the face down TV with cables sticking out and sparking like alien antennae informed me of the source of the crash. Jamie was backed up into a corner, stunned and frozen by the riotous noise. I closed my eyes and took a deep breath, shook out my imaginary cape and entered the destruction head on.
Two hours later and I had finally got Jamie to stop crying and fall asleep, though he was still unconsciously hiccupping every few minutes and his beautiful face was still screwed up in a distortion of pain. I closed Jamie’s bedroom door slowly and crept downstairs, taking care to step on the edges of our creaky old staircase to make as little noise as possible. Back in the living room, Harry was still on edge and simply could not comprehend why the TV wasn’t working. I had had to stand it up again, worried that one of the boys would trip over it, but Harry couldn’t cope with its unresponsiveness when he pressed the remote and so it had been knocked down a further three times since its first defenceless attack.
I had done everything a Super Woman could do to help him understand. I had repeatedly told him in the exact same words “Harry, the TV is broken”. I had exaggerated the Makaton sign for ‘broken’ and I had even stuck a red cross of electrical tape over the TV to mimic the symbols he used in his daily routines in order to visualise abstract concepts like quantity or time. But Harry’s mind refused to take in the messages. He tried again and again to switch on the TV and alternated between hitting it, himself or me and crying inconsolably for Mr Tumble when it refused to co-operate with him.
By 10.30pm, when he showed no signs of relaxing and I could think of nothing else to do, I wrapped my arms firmly around him from behind and used my body to propel him towards his room as quickly as possible. It was a risky move; Harry was hypersensitive to touch. Just brushing his skin could make him cry out in pain. I put as much even pressure on him as I could. Firm and deliberate touch was the only form of physical contact he could tolerate. We made it up the stairs in our strange dance and then just as I was about to manoeuvre him into the bedroom, he threw his arm up and caught me on the bridge of my nose. My eyes were immediately filled with water and I couldn’t see. He turned to run back downstairs, while I squinted and blinked and tried desperately not to shout him back. He couldn’t cope with shouting. His relationship with the world was so fragile that any wobble in the delicate balance of his confidence could spiral him into an anxious frenzy. If I shouted to him, he wouldn’t understand that I needed him to respond to me for his own good; instead he would think that he had done something wrong and withdraw into himself, repetitively lunging from one leg to the other or spinning furiously on the spot to regain some control of his world.
I sank to the floor with my eyes still screwed up to hear him push the TV over once more. I sucked in my breath and held it for as long as I could before expelling it slowly. Sometimes being a Super Woman was the most difficult job in the world, but it wasn’t as if I had any choice so I stood up and went back downstairs. Harry was jabbing ferociously at the TV remote. I moved around in front of him and knelt down to look into his eyes. He flicked his gaze from left to right, looking into my eyes for a millisecond only. I said his name firmly and clearly, “Harry”. He tipped his head to one side a little but did not look at my face. “Harry. The TV is broken. It is time for bed.” I repeated the sentence, word for word. Harry echoed the final word, “bed”. I took hold of his hands and pulled him up onto his feet. Then I firmly guided him back up the stairs with my hands on his shoulders. I noted that his whole body was drenched in sweat from the exertion of the last hours.
Once in his bedroom, I quickly and expertly got him into his pyjamas and guided him into his bed. His body was beginning to react to the explosion of energy and adrenaline he had exposed it to and I could feel less resistance against my actions. Once he was lying down, I climbed in next to him and allowed half of my weight to press down on top of my oldest son. I had lain on top of him until he fell asleep every night for the past 2 years. I couldn’t fathom it, but he would stay awake for 2 or 3 days straight if he didn’t have the pressure and warmth of another person on top of him before falling asleep. Maybe it was comforting to have someone there. Or maybe, as I had read, it was a matter of sensory processing and his body’s inability to settle itself into sleep. In theory I suppose it’s an interesting topic of discussion, but in reality I don’t care about the reason behind it. I just know that to get my son into bed and asleep in order to keep his body functioning I have to lie on top of him every night.
It was about 20 minutes before I heard and felt the rhythmic breathing that told me he was sleeping. Extracting myself slowly from his bed I crept downstairs with bated breath until I was safely in the kitchen with the door closed. My breath exploded in a racking sob as the last of the adrenaline fled from my limbs and I sank heavily to the floor, unable to move or think any more. Before long however, my responsibilities began to speak to me loud enough to drown out my exhaustion and self-pity and I dragged myself off the floor to prepare for tomorrow.
Job number one was to sort out the TV. I couldn’t leave it the way it was but I had no idea what to do. I couldn’t leave the boys to go and get it replaced and even if I could I knew that the introduction of a new and different TV would tip the balance again for Harry tomorrow. I went through to the living room and inspected the machine for the cause of its rebellion. It didn’t take me long; the power cable had been disembowelled near the plug socket and I immediately cursed the cat for it. I should have thought of it earlier because ever since we got that little beast it has been chewing through ropes and cables as if it has some sort of personal mission to execute. I was relieved to find the source of the problem but I was still no nearer to fixing it. Surprisingly I didn’t have a stash of spare cables hidden away anywhere in our sparse little house.
I looked around the room then with a critical eye and couldn’t help but smile wryly at what a stranger would think. There were no ornaments or pictures to decorate the spaces and the furniture was minimal and completely neutral in colour. Labels with simple drawings and symbols on them adorned each item in the room as a way of linking the abstract and concrete for my little boy. I had worked hard to create an environment that wouldn’t over stimulate Harry and that would provide his brain with every possible chance of learning and developing despite the myriad obstacles. Because you see, Harry is autistic.
‘a disorder of neural development’
‘a bio-neurological disorder’
‘individuals presenting symptoms of abnormal self-absorption’
‘a spectrum of psychological conditions characterised by widespread abnormalities of social interactions and communication’
And there you have it. This is my little boy in a set of definitions. I can remember the doctor so clearly, as if he is still standing right beside me. Harry was 3 years old then and I didn’t know what I’d done wrong. He wouldn’t look at me, he wouldn’t engage with me; he never seemed to want anything, he was never happy and he was never sad. When I looked into his eyes I saw a different world; a world that made no sense to me. And then sometimes he would snap and become so full of anger and fury. I remember the first time he began to hit himself with his lovely little hands, and the big red stains that appeared on his lovely little head. I felt like my heart was breaking and I still feel the same every time he turns on himself, six years after that first time.
The doctor was great, but I hated him for what he told me. I hated him for making my son different, and abnormal. I hated myself for whatever it was that I had done in my life to deserve this. Perhaps my desire to bring a child into the world was so self-absorbed that I was being punished. But I couldn’t allow myself to be so turned inward for long. This little boy, this little autistic boy needed me more than I could have ever thought possible. And as I looked at him I knew that I loved him more than I could have ever thought possible. So, armed with a list of books and journals to get my teeth into, I left that doctor’s office with a superwoman’s cape on and I promised my little Harry that I would do everything in my power to help him. Ha
Since then I have read just about every piece of published writing on autism spectrum condition, on multisensory integration therapies, on gluten and casein free diets, on structuring environments, on learning through play, on augmentative communication systems… And I have been at the forefront of every step, both monumental and miniscule that my darling boy has taken. I sometimes wonder what gives me the strength to do it. People ask me sometimes how I make myself do it. I don’t make myself do anything I tell them. I love my son and that’s all the drive I need to make his life on this planet the best that it could possibly be.
But I’m lying when I say these things. Not about loving my son. I really do love him so much that sometimes I think my heart will break. But it’s not always enough. Sometimes, like now after I’ve spent hours and hours wrestling with him to go to bed, or when I’ve replaced his bed sheets after he’s ripped them to shreds the fourth night running, or when I’ve run after him around the house for 45 minutes just to get a sock on his foot knowing full well that he will only pull it straight off again, that’s when I want to lie down and scream at the cosmos that it’s not fair. I didn’t ask for this, I don’t deserve this and I. Can’t. Do. It. Anymore.
And every time I’ve got to that place, that’s when I hear this little voice and I don’t know if it’s my mother’s voice, or the voice of God or just my own true voice. It reminds me that I love my son and that he needs me. None of this is anyone’s fault and it’s just how life turns out. No-one gets to choose their own future but life throws things at you and all you can do is decide how you’re going to react.
I suddenly realised that I’d been standing stock still with the broken TV cable dangling from my hand. I smiled wryly, took yet another deep breath and went to the phone to start ringing everyone I knew to find a replacement cable in time for Mr Tumble in the morning.
In my dreams I am Super Woman. I can do no wrong and the world is a better place because I am in it. In reality I’m just a mum who loves her children.