Showing posts with label ASD. Show all posts
Showing posts with label ASD. Show all posts

Saturday, June 11, 2011

Little Words

This story was initially written to enter in the Woman's Weekly competition. I have since edited and changed it, but the central theme remains. How isolating autism can be for a family and how one small gesture can change so much.



I
“Eleven, twelve, thirteen, fourteen.” Passers-by paused and watched as the child happily tiptoed past, his gait irregular. His mother remained close, guarding her small charge. Singsong tones flowed repetitively as his golden curls bounced, head bobbing in time with the vocal rhythm. Tall, white daisies lazily leant through the fencepost gaps to join in, sunshine flitting over their jiggling windswept heads as floral movement synchronised with endless chanting. “Twenty, twenty-one, twenty-two.” His mother knew Steven would religiously count every picket along the way, angelically he pointed to each staunch, soldier-straight paling. “Sixty-seven, sixty-eight, sixty-nine.” Sharon gazed down, her heart swelling with maternal love as she worried, anticipating many arrival scenarios. He was so physically beautiful, this child of her heart. Strangers often commented on his outward perfection, though it was usually followed by the loathed “shame he’s autistic, you wouldn’t know it to look at him!” She had heard it so frequently that she now expected the remark and merely smiled at those so ignorant as to comment. Her son continued to count, intent only on the soothing rhythm and oblivious to his mother’s scrutiny and thoughts. “Two hundred and ninety-one, two hundred and ninety-two.” Her angelic child’s blue eyes focused compulsively on the regimented fence line. His father’s eyes, the father who had walked away two years ago proclaiming, “No child of mine could be autistic! This is your fault, you and your molly-coddling! You’ve spoilt him and made him autistic” The blood began to pump faster and her heart beat erratically as she struggled with the rising rage thoughts of her ex-husband’s betrayal provoked. His constant pitch did not falter until the mid four hundreds. Four hundred and seventy-four pickets added by the time mother and the child reached the towering thundercloud-grey steel school gates. Who knew, maybe today would be a good day, maybe today would be the day her six-year-old conquered some of his inner demons and walked through the entrance without trauma.
“No!”
“Steven, you have to go to school.”
“No!”
“Come on Steven, I will come in with you.”
“No! No! No! No! No!” The child’s distress quickly escalated, she looked about, futilely hoping nobody was too near. Sharon prayed quietly under her breath, “Please God, don’t let anyone say anything, don’t make it even worse, please God, just this once.” Impotently she tried to grapple his tightly strung body through the boundary, but with a burst of small boy strength Steven thrust himself forward onto the hard ground. Exhausted from the battle, fleetingly she loosened her normally tight grip. The child leapt to his feet sensing freedom and escape, fear adding agility to his normally clumsy movement. He raced unimpeded towards the busy, deadly road.
“Whoa Tiger, where’s the fire?” An arm reached out and successfully looped around the small escapee’s waist. The boy went rigid in the stranger’s arms. Shock gave a moment of silence, then the child released his pent up breath in a loud wail. Twisting, turning, arms flailing, panic set in.
Sharon raced to the roadside. “Steven, Steven, look at me baby! It’s Mummy, Steven take a breath, its Mummy, open your eyes, its Mummy.” She quickly pried him from the shocked rescuer’s arms and into her own, struggling to contain and calm the now hysterical boy. Groaning, she sat, splat onto solid ground and firmly braced his body against hers. She secured her arms around his small thrashing frame, gently rocked and hummed, rocked and hummed. Solely focused on him and his distress she was unaware of any prying, curious eyes upon her.
“I’m sorry, didn’t mean to scare him, I just wanted to stop him reaching the road.” The stranger crouched in front of the pair, concern etched on his worried features. “Is he okay?”
“Yeah, just leave us; he’ll be all right in a moment.” Her hushed voice sounded strained to her own ears. The school bell jarringly announced the start of another school day. Oblivious to the increase in activity Steven’s mother remained rocking, humming nonsense quietly as people pushed past through the school gates. Her son stilled within her protective embrace. He began to hum his personal tone. Crisis defused for the moment, she risked a glance at the confused stranger squatting before them. “I don’t think I thanked you, thank you.”
“Reflex action. Couldn’t have this little fellow reaching that busy road. I’m Sean by the way.” He started to stretch his hand forward in greeting, then stopped as he realised her predicament with the child still imprisoned in her arms.
“Sharon, and this little Houdini is Steven.” She wiggled fingertips keeping her hands clasped. A brief flickering smile traversed her clenched jaw.
“Do you need help getting him in to class?”
Embarrassment clouded Sharon’s face as she realised she had obviously delayed him. For a moment, she had forgotten how their odd little family appeared to outsiders, those who had no idea what this life was like.
“No, we’ll be fine now. I’ll get him to class shortly, thanks again for your help.” She stumbled clumsily to her feet, impeded by the tight hugging grip of her son, now clasped around her thigh.
“I’m sure I’ll see you again, my niece attends here and I’ve started helping my sister with drop-off. She is in Grade Two with Mrs Miller. My niece, not my sister.” He grinned disarmingly, risked a glance at his wrist and cursed quietly. “Damn, have to run. Now sport, no more Olympic sprints okay?” Sean leant forward to ruffle Steven’s dishevelled blond locks but the child flinched and tightened his rigid grip on his mother’s leg. The man shrugged, admitting defeat in the face of such obvious terror. “Bye Sharon, Steven…” He pulled open the cumbersome door of the green four-wheel drive, started the engine and roared off after a brief wave acknowledging the statue-still mother and son unmoving on the pavement.
“Well sweetheart, do you think we should have told him that Mrs Miller is your teacher too? The poor man must think we are nuts, though I think he was a little shell-shocked himself.” Grinning, Sharon tousled her son’s messy blonde locks in a comforting gesture. Steven freely accepted his mother’s familiar touch in stark contrast to his reaction to the baffling stranger. “Well, we almost had a normal conversation with another adult, mate!”
Sharon picked up her son’s discarded backpack, uncoiled his grip from her leg and took his small hand in hers. She lent down in front of him, “Steven, look at me please, sweetheart. Steven, focus, look at Mummy. Don’t ever run away from Mummy like that again, it was very dangerous, you scared me!” Her son’s glorious eyes flicked to her then away, back and forth, back and forth. Her age-old instincts insisted he had heard, but how much he had processed she could not be sure. He had the ability to surprise her with his understanding, usually when she least expected it. The fair-haired twosome turned back to the school gate, bracing for another attempt at the entry gauntlet.

II

As she walked through the high gates, Sharon could not resist glancing around, wondering if the hero of the previous morning’s episode would appear. The afternoon sun dipped behind the tall trees as she allowed herself a minute of daydreaming, fantasy all she could summon energy for in her complicated life. She had spent her day ricocheting arguments between the various public departments who governed her child’s therapies. Her constant companions of emotional and physical exhaustion hovered near the surface threatening to overwhelm at any moment. She reached the sheltered area outside her son’s class where the other mothers congregated in groups, chatting. Steven’s ritualistic stress chant wafted above the din of the classroom as Sharon froze, intent on listening, trying to decipher the exact tone amongst garbled noise. The bell rang with the manic tones of an ice-cream truck melody cranked to high speed and the classroom door opened. Children spilled clumsily through the cavernous gap like evils tumbling from Pandora’s Box. Only Steven remained inside, his mantra echoing from the enormous cardboard refrigerator box consuming one corner of the room like a small brown TARDIS. “Soon home time soon home time soon home time soon home time,” his tumbling words almost sliding into one drawn consonant. Sharon looked to Mrs Miller; “Bad day?” one raised eyebrow punctuated the murmured rhetoric question. She always knew it was a bad day when greeted by the boy in the box.
“We had a little incident after second break I’m afraid,” the matronly middle-aged educator replied with an air of dejection. “Cyndi Turner was teasing Steven and he lashed out, quite violently.”
“What exactly happened?” Sharon was not accepting the abbreviated version, she needed details to resolve the fallout.
“I didn’t hear what was said, I only realised something was going on when Cyndi screamed that Steven had pinched her. The poor child had a large welt on her wrist and needed an ice pack. She said she was only making a joke and he became extremely angry!” Mrs Miller thus declared her loyalties with her outraged tone.
“And where was Steven’s aide during all this?”
“Jeanette was at the office copying some work for me, she was only out of the classroom for five minutes.” Defensiveness now crept into the teacher’s voice. Sharon had had enough, her emotional reserves were too depleted.
“Mrs Miller, I will find out what the actual events were from my son, and let you know, but you and I both are aware that Ms Turner is renowned for antagonising Steven to provoke a reaction. I am surprised that you allowed this situation to arise. His aide should be with him to avoid such incidents, not in the office doing errands! I am not excusing my son, and will deal with him at home, but I am not accepting he is solely at fault here. What actions were taken when it all erupted?” Steven’s mother leapt into the fray to stand up for her son.
“I assure you Mrs Kennedy, the situation was dealt with promptly considering the chaos which arose from it. Cyndi was crying in pain, Steven was screaming. I sent Cyndi to sick bay with another child escorting her, and made Steven go into his sensory box to calm down.” The sensory box filled with comforting items for her son: a weighted blanket, earmuffs, large, dark sunglasses and a balaclava. Steven could climb in and shut out the bewildering world when overwhelmed, but it was NOT designated for a punishment cell. Anger bubbled threatening to boil over.
“I am taking my son home now, but I would like to discuss this further tomorrow after I have spoken with him.” Her quiet declaration was firm, no room for argument. Sharon went over to the looming cardboard container, the daunting silence speaking as loudly as the prior chants. She leant down and opened the flap to reveal her son’s tearstained face. “Oh baby, it’s okay. Mummy’s here now.” She climbed into the constricted space and embraced her child. He shivered violently in her arms, his confused world jumbled. “Let’s go home sweetie, we can count the pointing pickets on the way.” A glimmer of a smile flashed across the small child’s face, gone so quickly Sharon wondered if it had even appeared. She gathered up her son, grabbed his backpack from his chair, and with one last disdainful look, walked out of the classroom into the sunlight of the deserted playground.

III

Sharon’s heart lightened a fraction as they approached the schoolyard and spotted the green Toyota Prado near the gate. She glimpsed a flash of blue uniform as the door opened to disgorge its passenger. Her quick intake of breath betrayed her dismay as Cyndi Turner leapt to the pavement, turned and waved calling “Bye-bye Uncle Sean!” She raised her eyes heavenwards, muttering under her breath, “Great, the jokes on me, only adult conversation in months turns out to be with an enemy spy.” She chuckled quietly in amusement.
“Mummy happy?” her son beamed up at her, his own panic alleviated by the distraction of his mother laughing.
“Yes baby, Mummy is always happy when she’s with you.” Clenching his small hand tighter, she leant and kissed the top of his head.
“Sharon! Steven! I’ve been watching for you two the last few days, no more sprints matey?” Sean drew level with the pair.
“Sean, we wondered when we would see you next. Steven wanted to say thank you.” At the mention of his name her son whirled around behind her, his face pressed into the small of her back. Sharon twisted one arm around to comfort him, encouraging him with “Steven? Don’t you want to tell Sean something?”
One hooded blue eye peeped out and a little voice reluctantly spoke, “Thank you, thank you thank you thank you thank you thank you.” Repetition began to filter into agitation as the words babbled on.
“Okay sweetie that’s enough, well done.” His mother hugged him behind her body awkwardly, halting the toneless flow of words.
“That’s okay Steven, you are welcome.” Sean leant around her and held out his hand but the boy clutched his mother tighter dodging the well-meant handshake. Puzzled, Sean looked to Sharon, “Is it just me he disapproves of, or any male talking to Mummy?”
“Don’t take it personally, he’s unsure with any strangers. Sorry, I’d best get him into class, it’s better if I help him settle quietly before the bell. Good to see you again Sean.” Sharon smiled to minimise the cynicism, then turned to continue into the school. His next words took her by surprise.
“Would you have time for a coffee afterwards? I don’t need to be at work until later this afternoon.” Sharon turned, her mouth opened in disbelief. It had been a very long time since any adult, let alone a man, had asked her on a social interlude, even just for coffee. Autism was a meticulous alienator, her exhaustion and the ignorance of others combining to control the isolating campaign.
“I promise, I don’t bite,” Sean smiled in a boyishly disarming fashion “and I’d like to talk to a fellow adult about the classroom dynamics.”
Suspicion sharpened her tone.
“Sorry, I don’t think I can. I’m sure you must have a million more pressing things requiring your attention.”
“Ouch, a charming but decisive no. Are you sure I can’t tempt you? I don’t mind waiting, I can utilise my mobile for some business calls. And I would really like the chance to sit and have a conversation away from school premises, people will talk if we keep meeting like this!” Mischievous twinkle added to his devilish air, Sharon had long forgotten how to deal with a flirtatious male.
“All right, a coffee, but how about I meet you at the café on the corner. You can at least be sitting in comfort waiting and making your calls.” A sharp tug on her hand drew her attention back to the small boy, whose eyes were as big as saucers, standing beside her, listening to every word. She must be flustered if she had forgotten her number one priority tightly grasping her fingers. He needed to get to class. “I’ll see you there as quickly as I can Sean, but right now I have to see to this little man.”
Sean grinned, “See you up there shortly. Bye Steven, have a good day matey.” The boy turned as his mother led him away, continually glancing back to the man standing on the pavement. His large, round eyes were shaded by clouds of curiosity as bright blue gaze beheld the twinkling green the man. Sharon watched as the smile on Sean’s face widened further with belated acknowledgement from the quiet, aloof child.

IV

The afternoon breeze flowed through the playground trees as the tall blonde-haired woman sat quietly on the bench at the rim. A secretive satisfied smile played at the edge of her lips as eyes closed she leant into the embracing branches of the Jacaranda behind the seat. Other parents did a double take as shocked recognition hit. Her relaxed posture and tranquil demeanour were such a sharp contrast to the brittle, jittery woman who normally appeared at pickup. Aware of the eyes upon her, Sharon remained still, silently replaying the events of the day. A cup of coffee and interesting adult company may be an everyday occurrence for most, but it was a rarity in her world. A pleasant, brief respite from her insular, demanding world, and a chance to reclaim a part of the person she was prior to her failed marriage and the draining demands of solo parenting a special child. Sharon eased back and mused, recalling the stimulating conversation, though it had started out stilted.
The frenzied tones of the school bell suddenly pulled her out of her reverie. Sharon jolted upright, eyes meeting the startled gaze of the regular mums holding court. She smiled, murmuring “sorry, daydreaming in the afternoon sun” to those closest. Puzzled glances were exchanged, this woman sitting in their midst was far more approachable than the defensive mother who flinched when approached.
She sat and waited for the door to open. Like an overripe fruit, the classroom burst and the children spilled forth. Steven flowed through in the middle of the surge, grasping happily a large piece of paper. Clutching onto his aide’s hand he called “Mummy, Mummy.” Sharon stood and opened her arms to her exuberant child. He flung himself to her, careful not to damage the treasure gripped in his hold. “Mummy look – mummy, look!”
Sharon took the proffered offering, and gazed at her son’s unmistakable hand drawn interpretation of a family. As always, a woman and child, but with a new addition: the man. Tears welled. Both of them had taken the first teetering step upon a new path. Steven pulled on her arm directing her attention, “S, Mummy, S. S people.” His finger pointed to the three figures on the page as he recited the drawn out syllables: “Ssssssteven, Ssssssharon, Ssssssean.” Little words so simple, yet expressing so much. The ice prison door melted a trifle further. She held her beautiful son in her arms, and silently uttered a prayer of thanks for the thawing of a little of the frost covering their isolated world. A closed door was now opening, and permitting hope to enter; hope for next time, or the one after. Hope for more. ‘I have a friend’, Sharon thought as she allowed herself a Mona-Lisa smile. She glanced at the child beside her. ‘No, we have a friend!’


Saturday, January 23, 2010

Computer Life - A Poem.

I wrote this poem many years ago - 2006. It was at a time I was still running madly on the learning curve about Autism Spectrum Disorder. I had a big wake-up call when I realised how much of their lives I was missing by my choices. Reading a blog post at Whoa-Mumma reminded me of how absorbed I was back then.





Computer Life
Sitting at my laptop
Looking for a cure
Typing away madly
Can’t resist its lure
Here comes the reason
For my search on this day
Mummy what you doing
Won’t you come and play?
I’m sorry sweetheart, I won’t be very long
But this is so important
Please run along


Talking in the chat room
Giving my best view
Writing in the forums
Sending some home truths
Here comes the reason
For my getting tough
Mummy are you busy
Come and see my stuff?
I’m sorry sweetheart, I won’t be very long
But this is so important
Please run along

I glance around at my boys
To see joy slide away
And realize the stupidity
Of what I’ve done this day
So shut down the PC
Turn around and smile
Mummy isn’t busy
Let’s play for a while!
I’m sorry sweetheart
I was so very long
But you are so important
Let’s all run along!

 
 




Thursday, November 26, 2009

Life With Autism

I wrote this story prior to my first foray into creative writing. We were required to write a piece up to 3,000 words to submit at the first class. Once I began I could not seem to stop and the words flowed from me in a cathartic outpouring. An edited version was runner-up in 2008 My Child magazine competition. I am posting it here (and it will have been read by many on another site) after reading another blog and realising how impossible it is for many to understand our world. If this opens the eyes of one other human, then it is worth it. For Boy 1, whose strength and belief in the good of all humbles me, and for Boy 2, who is the most compassionate, supportive child, even if he is a smartie pants. I love you both infinity plus 1.



I never dreamt I would grow up to be the sort of woman who cries at the drop of a hat. I always despised women who ride a huge rambling rollercoaster of emotion. Keep it to yourself - exercise a little self-control for God’s sake. Now I have joined this emotional little clique. I read an article this morning, sitting on the toilet of course – where else would I have the time alone to read, and I cried yet again. What was this inspirational topic? Another Hollywood celebrity discussing life with an autistic child. Autism is not selective. People from all walks of life are affected by it. An elite club you do not really know much about until YOU are invited to join. Even now, when a new member is revealed, I cry tears of empathy, grief and relief. I will have another congenial companion on the journey, they will understand. At the same time, my heart breaks for the path I know they will have to tread, the challenges and compromises they will have to consider on a daily basis.
It is quite ironic that emotions erupt from me when the catalyst is a disorder associated with the lack of emotions. Of course, I now know that this impression of autism is incorrect. People on the autism spectrum still have the gamut of feelings but react and reveal them in a different way to the average person. Every child on the spectrum is an individual so the disparities are endless.


How would I describe my son? He is eccentric, unique, pure, complicated and has Asperger Syndrome. He is emotionally challenging, heart warming, and eminently loveable. My prayers are that he is happy and content in his life. I dream he will marry, have kids, follow his dreams, fulfil his potential. He is angelic of face, volcanic of nature but only those who witness him in full meltdown see those masked eruptive depths. Generally, people use the hated phrase: “he doesn’t look autistic, does he?” I wish I knew what autism looks like.


For a parent, those four words: “your child has autism” is paramount to someone telling you: “sorry, you have a terminal disease.” The phrase has a terrifying fatal ring that you did not see coming. Pow, take that. It is ironic that Time magazine nominates autism as the only condition equivalent to cancer in its genetic complexity. Gut reaction: it is a joke, right. Not your child – hey – he talks and is loving! Don’t autistic kids sit in a corner barely emoting let alone being verbal? Must be a mistake, they have to be wrong!


Your whole view on life changes, not in a split second, but gradually, little by little, as the implications of this diagnosis kick in. When a child is born, it enters into a world of parent ambitions and dreams. When that child is diagnosed with a disability, it is the parents who grieve for their lost dreams and ambitions. Disbelief, grief, acceptance, survival: these are the steps. Like a reformed alcoholic following the Alcoholics Anonymous guidelines, we follow our own AA path: autism awareness.


Enter the minefield of lovely, helpful professionals. Sadly, a high number will bombard you with worse case scenarios accompanied by literature to terrify, or offer no assistance whatsoever. Expect you to mine through the fields and find the hidden gold of therapies or support available. A secret society and they must not tell unless the parent unlocks the concealed code. It is only once progressing through the system you learn to become ruthless and track down the rare professional who understands. Don’t get me wrong, we have encountered some amazing specialists along the way, but why have we needed to fight to find them?


As parents, a pervasive, encompassing loneliness engulfs you. Like two shipwreck survivors, you cling to each other, reassure each other, and sometimes loathe each other. Too down beaten even to try to communicate with external connections, friends fall like flies. The child becomes the centre of your focus – the marriage just has to coast along under its own steam. Time is in such short supply to even shower seems an unnecessary waste. The internet and its wealth of knowledge becomes a constant lure. Conversation revolves around droplets of information to be shared. No wonder so many frailer marriages implode under the pressure of a special child. Thank God, ours has not. Thank God, we both follow the same path. Thank God, we still love each other enough.


In the dead of a long, dark night I once wrote:


“What can I say to people to let it out? They say how average, normal he seems but they don’t live it. The fights, struggles, mood swings – his and mine. And the questioning of how much damage I am doing to his brother. How wrong am I getting it? The doubts, anger and frustration of living day to day. The struggle to do normal things like taking a family break. He told me today “I will kill you” and he probably will, somehow, sometime; the heart attack or stroke from the stress, the gun when he is older and angrier… the alcohol I use to feel better... or not to feel at all. So now I sit, unable to sleep; and type and cry.”


This is still my reality though not all the time. My son makes me proud in so many of his actions, methods and beliefs. These are the moments that keep me going, that hold me to the path we have chosen. So many different therapies thrown at you, to pick a direction and stick to it is fraught with uncertainty and doubt. What if it is the wrong choice? What if I am damaging his fragile psyche and another choice would have smoothed his life for him? The consequences could be tragic if we get it wrong. Think Columbine or Arizona Tech. Asperger Syndrome was one of the terms bantered around in connection with the perpetrators of these crimes. The frustration and isolation that erupt into violence, a newsflash revealing a frozen glimpse of a parent’s greatest fear. My greatest fear. How did their mothers feel? The pain and questioning. What did they do wrong? The unbearable guilt and shame, overwhelming loss and grief.


I second guess and doubt my choices already. It is easy to feel that a decent mother would be able to fix things for him. No matter how many times I am told otherwise, I often wonder if I did something to cause this. It is so much harder because I swim against conventional thought. MY child. Don’t they get it? MY child. Nobody on this earth understands him the way I do. Not even his father who acknowledges the truly unique, special link I have with my firstborn. His little brother probably understands him well, but still not that iron, heat forged, binding chain we share. Yet I am probably the toughest with him. I have never subscribed to the school of “poor me, poor him”. I have never allowed the boundaries to differ in relation to both my children. My oldest has to live in the real world, thus he has to learn to cope with the real world. Some mothers think I am harsh. Some mothers think I am obsessive. Some just think I am delusional.


Most education professionals cringe when they see me coming, or if my name is mentioned. One very senior special needs educator said: “you are an overzealous mother who is causing her child undue anxiety and stress by your attitude. He cannot learn and you will scar him with your belief otherwise”. Five of the eight people present believed he was right. I wonder if that man considered how he was scarring me with that comment. Years later his words still taunt me in the sleepless 2am worry sessions. But time has shown how incorrect they were. If only I had the energy to track them all down to flaunt his school report cards.


The tragedy is we are meant to rely upon these “special” educators, these experts. The special needs teachers, the special needs guidance counsellors, the special needs directors in the education department. Those on the front line, the teachers and aides themselves, have allied with us. Former principals have pushed boundaries for us. For this, I am so endlessly grateful. They put their hearts into helping my child, but are often bound by the ridiculous ideas and limits placed by the so-called specialists. I despise some of these authority figures. What was it Mark Twain said? “In the first place God made idiots. This was for practice. Then He made school boards.”


I try not to compare my children. I leave that to the school system. In the household where I grew up, we were treated as individuals. Comparisons were frowned upon. The phrase “why aren’t you more like your sister” was never uttered. I have always told both my children from birth they are unique, special, different. It is heartbreaking to see the way society likes to knock us all into the same monotonous shape. Especially the education department – submit or get out! Comparison is the name of the game. No wonder home schooling is the greatest growing teaching mechanism in the developed nations. I hope both my children survive the educational world with some eccentricities intact. Conform to cope, not to become the round peg. Have the confidence and self-belief to embrace their differences, but still be accepted within mainstream society.


Writing is an ordeal for my son due to his fine motor problems. In this day and age, you would think the system would get it. He will never be comfortable with penmanship, it tires him beyond belief. Most autistic children have low muscle tone, which affects both fine and gross motor skills and it is more difficult because of the pressure he places upon himself to be flawless. Did I mention that these kids are perfectionists? He often will refuse to attempt a task so overwhelming is his fear of failure. I have framed the first Mother’s Day letter he wrote me. My close friends cry when they see it on my wall. I know exactly how hard it had been for him to write this. It is equivalent to another child writing it in blood. The last line in it is “You are very special because you always save me from falling.” When questioned about this line, his reply was “you always save me Mummy, from falling sad, from falling mad, from falling over.” My son. Who believes Mummy will fix anything. I have to live with the knowledge that I will not always be able to save him from falling. I will not always be there when he falls. And so I have to give him the tools to be able to pick himself up, dust himself off, and keep moving. Physically and emotionally. Is it any wonder the pressure pulls me down at times? In my life there is a constant undertow of emotion, ready to drag me under at my first sign of tiring. But if I go down, he goes down, so I swim on.


My child has the typical autistic sensory issues: smell, touch, taste, sound, sight. Like a superhero, these are fine-tuned to hypersensitivity. Makes for fun on any day, is excruciating on bad days. You know he cannot help it, but it is the whinging that wears you. Oh God, the whinging. If you think all kids whinge, then multiply it by 100 and you have life with an autistic child. These children are the eternal pessimists of life. I think Murphy was autistic (you know – the one who wrote “what can go wrong will go wrong”).


It is probably why I joyously revel in my child’s cheekiness. To hear my son use sarcasm or throw a witty comeback makes me glow with pride. ASD children do not have usually this ability. Everything in their world is factual and literal. When his teacher says “good day, no hiccups.” he looks at her in bewilderment. “I didn’t have hiccups today or yesterday or at all last week.” Why would his teacher mention hiccups? He really does not get it. So when I hear him say, “you punch like a girl” or twist a word for a wholly different meaning I know we are slowly winning the battle. The anthem I can hear in the background right now is music to my ears. “My brother’s a pinhead, my brother’s a pinhead.” The chant of a champion. We struggle to teach him the things other kids just seem to know as they get older. I do not want him to lose whom he is, just to make the journey easier throughout life. And to do this he needs skills that others take for granted. If only I could transfer some of the younger brother’s excess to the older brother.


What do autistic children born to demure mothers do? What happens to the children diagnosed with autism whose mothers do not know how to fight? The reserved ones. Do the mothers learn to fight? Do the children become self-sufficient? Or are these the children who fall between the cracks? The system fails them, then Mum does. Future massacre perpetrators. Terrifying. Heartbreaking.


I am by nature a doer, but battle has now become a way of life. I fight my son every day. Eat breakfast. Please eat breakfast. Son, you will run out of time, eat breakfast. JUST SIT THERE AND EAT BREAKFAST! Get dressed. Please, get dressed. Just get dressed. SON GET DRESSED RIGHT NOW OR I AM TAKING YOU TO SCHOOL NAKED! No Mummy is not trying to cause you stress by yelling. Son brush your … Well, you get the idea. Sadly, the biggest campaigns have been waged against those who are meant to be our greatest support. The medical and educational specialists. The burnt out ones, I call them. They look at you as if you are an illiterate idiot, or an obsessive parent in denial. Don’t you understand? Your child has autism, it is not curable! I know the diagnosis. Disbelief and grief were dealt with and then conquered. We have to or the family will remain in an endless limbo. Acceptance and survival are far more complicated, and the impossible is discerning what his reality and potential may be. Exactly who gave these so-called masters a crystal ball? I want one! They are so positive of the outcome for MY child, so definite in their projections. There are so few who understand our plan, who bolster and cheer us on. Give us the positive reinforcement we so crave. Why can’t more of these professionals realise how much we need to hear those few words: “You have made the right choice.” It is not that hard to say!


I do NOT accept the restrictions and the doubt imposed on my child’s abilities. I know what he is capable of. I am aware that many things will not develop with maturity and age if we do not intervene now. Therefore we do. We give him the grounding he needs to become a happy, fulfilled adult. Teach him to use his own judgement to overcome the obstacles. To make the best choices, not the worst.


The internet becomes addictive once you have a child diagnosed with autism. I grasp onto little bits and pieces, ideals and ideas, beliefs and gut instinct. Weave them into our lives. Our path. Our way. Our desire to help him be whoever and whatever he chooses. OUR WAY. The World Wide Web can be your greatest resource or the most insidious tool in the universe. Who was it who said, “A little knowledge is a dangerous thing”? So true. The search for information and ideas can backfire when you stumble upon the horror stories, and the many armchair experts who prophesize doom and gloom for the autistic child. “They can’t” people, rather than “they can!”


I have a signature underneath my username. “Please don’t annoy me, I’m running out of places to hide the bodies…” The original was actually a bit stronger than this, but I adapted it to be a little more politically correct. Just to warn some people I meet on the internet highway that I am a lioness protecting her cub, the warrior queen using my wit to take down any enemies.


It is terribly amusing that I am writing all this. Baring my soul, ripping off the scab from my heart. I try not to ramble on too much about him. People’s eyes glaze when I am spilling too much. Therefore, I do not. It just seethes in the pit of my stomach until I get through it, or until I purge it all on the internet to my close coven of friends facing the same battles. Yes, we do actually call ourselves a coven or sometimes a clique. A clique where nobody ever has to fight for membership. A group of emotionally turmoiled mothers grasping hands, baring souls, trying to bandaid the wound. Now I sit, and again I cry. This time with gratitude that these special women get it. I can stop fighting and breathe. Just for a moment.