I recently discovered I had not been shortlisted for the Writers & Artists short story competition on the theme of Joy. Far from being a blow, happily this means I am now free from the associated publishing restrictions. There is an added bonus; the timely coincidence of World Autism Awareness Week. Please feel free to spread the word by sharing my story with others.
Anthony Seymour Davis
“Anthony Seymour Davis.”
I hear his name and join the applause as my eyes follow the tall, slender young man. He climbs the wooden steps to the stage and strides with python-esque confidence towards the Dean of Brunel. Tears of gratification threaten to ruin my mascara. Experiencing the joy of this occasion is something I never quite allowed myself to believe possible.
I study the moment when the scroll passes from hand to hand, watching for signs of awkward discomfort in the interaction. There are none. At least no overt manifestation of the anxiety Anthony will be feeling. So far so good. I clasp my hands tightly together, fingers entwined in a spaghetti mass of tension. Only a few more steps before he leaves the limelight he so hates. I am torn between closing my eyes to pray to a god in whom I do not believe and tracking his every quirky movement back to his seat. Opting for the latter, I rejoice in a fleeting expression of emotion on his handsome face. To others the upward shift at the corners of his mouth is imperceptible; to me it is a ten foot high billboard of a smile, shouting ‘I did it!’ Safely down in his seat, my eyes are still drawn to the back of his head, away from the stream of students perpetually passing through, as the ceremony continues.
If any parents or siblings nearby care to notice me, they will see a faded smile and a vacant stare. I am no longer connected to the event. My body is still present and can feel the distant drumbeat of the announcements followed by the ripples of applause but I have lifted out of myself and back into the life that led me here.
My puffy eyes in my swollen face land on the swaddled form beside me on the trolley. What is my response to this first sight of my new-born?
“Pain, I’m in pain!”
The birth was an ordeal, the details of which I will spare you, except to say they lost his heartbeat twice. I mention it by way of explanation that joy does not always arrive on the due date. Nor can it exist in a vacuum. To feel it you need a benchmark. Something to measure against. I am not concerned. I know it will come. Some five days later bliss is delivered to me in the guise of a Chinese take-away on my lap, in the newly decorated nursery, alongside my angel of a sleeping babe. We are home.
I am expecting the euphoria to dissipate. I wait for the sleep deprivation to take the shine off my happiness. Instead I feel blessed. With each fresh milestone I marvel at the miracle of life. I swell with pride at every dutiful attendance at the health clinic. They chart his progress in the little red book. Excellent weight gain. Ninety first percentile for height and staying true to the curve. My munchkin is a good eater; a good sleeper; a happy bouncing baby boy. As the months pass I feel sure this model child will begin to crawl soon. There you go! What a way to celebrate his first birthday. Dressing him in his cute denim dungarees, a present from Nana, we head to the state-of-the-art soft play centre nearby. Not such a great success. I put it down to the unfamiliar environment and the noise. Let’s face it even adults struggle to cope.
I delight in his blossoming vocabulary, translating for friends and neighbours. It’s understandable; he is easy to misunderstand. In all fairness, being a first-time Mum I do not see the black shadow approaching. Joy has a nemesis. The indications are there, yet masked by blissful ignorance. I smile each time someone asks: ‘isn’t he walking yet?’ Jokingly my answer is always, ‘no but my muscles are getting stronger every day. Who needs to join a gym when you’re carrying your eighteen month old everywhere?’
Then there’s a visit to the clinic which tickles the alarm bells.
“You can dress the happy chappy again on the next table. Afterwards if you could take a seat, one of the health visitors will call you in a few minutes.”
Armed with the faithful red book, updated with the latest measurements, we wait. Anthony amuses himself with the wheels on a plastic truck. Spinning and spinning each one as fast as he can. He has an intense fascination for wheels. Well he is a boy.
I must confess it is difficult to recall much of the consultation beyond the summons, except perhaps the final remark, which I cling to with hope.
“This kind of developmental delay can sometimes indicate a problem. Best to get it checked out. It’s probably nothing.”
At first the multitude of tests leave the chink of light of a door ajar; there is a small chance it is indeed nothing. Another milestone. Two years old and he walks! Surely a good sign? I am delighted. The investigation rolls on. Something is not quite right. It’s a tough time. I wake from the denial, accept we need answers and begin the crusade. Juggling the fulltime career, the appointments, the often destructive judgements of others, I battle on. Unconditional love is a life force. It fuels my soul with the determination to keep fighting. Through the dark days whilst awaiting diagnosis, my little boy is a wonder. His laughter lifts my spirit. His cuddles warm me to the core. His happiness keeps me spinning; his spinning keeps him happy.
Finally his differences have the label they were so reluctant to give. Developmental Coordination Disorder. Confident now. I believe I have a wrecking ball to demolish the previously impenetrable, barricades of the System. Who am I kidding? Rapidly I realise it’s a mighty foe. The rules of engagement are enigmatic; ever shifting sands beneath my feet. I strive to do my best. Voraciously I devour knowledge, arming myself with expertise. I anticipate the big campaign. I lose. No statement of special educational needs. He’s not bad enough.
And so a landmark; first day at school. The mums gather and compare. They express surprise.
“He’s just the same as ours. I wouldn’t worry.”
The problem is it’s a hidden handicap.
At parent consultation the teachers comment.
“He’s bright. He’s doing ok. Maybe he’s a little solitary. Children of his age often are. He’s probably shy.”
A silent scream inside my head. Why is the System waiting for him to fail? At each developmental check-up his difficulties are more pronounced, diverging further and further from the norm. He’s still not bad enough. I fear we are on a runaway train, hurtling towards a cliff. The defective track will not carry our weight over the ravine. Will somebody in the System please shift the points and save us? I refuse to accept the inevitability of it all.
My growing son is remarkable. His ability to retain information. His drive to overcome challenges. His persistent resolve to succeed, despite the bullying. His eager race to the school door every morning. Potential oozes out of his every pore. Someone will notice soon.
In search of an ally, I discover one in the most unexpected of places. A formidable lady within the System! Past encounters breed low expectations. By contrast this new Head is a beacon in an otherwise barren landscape. My relief is palpable. My heart soars because at last I am not alone. There is no resource in the System. Instead it is our mutual trust, coupled with her understanding, which unlock Anthony’s talents. The junior years fly by. He flourishes. His confidence burgeons. OK he is unable to tie shoe laces or colour within the lines; not exactly essential life skills. He learns the piano; passes cycling proficiency; secures his gold swimming award. Not bad for someone whose motor-coordination delay could so easily have prevented these achievements. He is forever lonely but the world is full of possibilities. Maybe he will find the soul-mate he seeks amongst the hundreds at senior school. He’s not greedy. One friend is all he asks.
I worry about the move. In my quest to choose the right school I must return to the battlefield. Such as it is, choice is limited by the System. Undeterred by the odds, I push on. With months of stressful preparation behind me it is appeal time. The panel of three sit in the oak panelled hotel room. At one point they ask: ‘why the appeal?’
My throat tightens and I almost lose it. I quote Anthony. He needs this school.
They seem on side although you never can tell. A nervous two week wait before the brown envelope taunts me from the doormat. This is it. Pulse racing and fingers trembling, time slows to a stop before I read the words, ‘You have been successful.’
“Wow! Wow! Wow!” I chant aloud. My victory dance a mix of triumph and elation. I catch my ridiculous reflection in the hall mirror. Who cares? I did it! I savour the breakthrough, looking ahead with optimism to the prospect of a bright future.
Anthony is amazing. Under the watchful eyes of his pastoral team he thrives. He refuses to allow his disorder to hold him back. He throws himself at every opportunity with enthusiasm. Creative writing emerges as a real strength. Public speaking too. His summer reports impress, year upon year. I am so proud. Popularity seems to be his only issue. He’s not a football playing boy’s boy. Girls confuse him. Group work is a worry. His isolation gets us both down. The will-power it takes for him to survive each day, to fit in, begins to wear him out. The dreaded teen years approach. There is a serious incident at school where he misreads social cues. Discipline is applied. Is it a coincidence that he withdraws? My happy-go-lucky Anthony has gone. How can I help him if he won’t talk? The teachers who knew him have moved on causing him to sail under the radar. In place of contentment I feel melancholy. I doubt whether my best is good enough. Mind you who else will champion his cause?
With a weary sigh, I summon the energy to fight once more. His condition needs clarification. I set my goal; Anthony will be a happy, independent young man, with all the support from the System he requires. I am in familiar territory. Countless assessments, referrals, months and forms later we receive our second three letter acronym of a diagnosis. This time ASD, Autistic Spectrum Disorder. Missing pieces fall into place: his heart-breaking social struggles; his dogmatic single-mindedness; his unorthodox wit. Whilst I understand these characteristics, I am a long way from understanding Anthony’s world. Somehow without much evidence of effort he makes it through the terror of G.C.S.E.s and into sixth form. I am simultaneously relieved and apprehensive. It is cruel. I cannot afford to pause for the luxury of celebration. Time flows on. My smiley golden-haired babe is a faded memory. In front me I see a striking sixteen-year-old with a brilliant mind. He is dependent on me for his independence. He dreams of university and friendships. If I can deliver his dream then perhaps I will find joy again. Perhaps he will return to me.
I am back in the auditorium. Flushing, I fluster to make way for others to exit.
“Sorry, sorry. I was miles away.”
I clutch my belongings to me, allowing my neighbours to pass. Following the crowd, I drop a glove, then my phone and almost fall flat on my face, in my haste to reach our meeting point. I spy him amongst a small, oddball group chatting by the fountain. He grins at me.
“Hi Mum. Let me introduce you to Tandy and Vikash…”
I grin too. We made it.
© Nikki Halsall 2015
an absolute joy to read! Nikki it was so moving, brought a tears to my eyes. Of course I’ll share x
Brilliant writing. I love this! Your story, never forgotten. We can all feel it with you. ‘Not bad enough’ has to be my most hated phrase ever. The system sucks. x