A LIFE OF OUR OWN

ALOOO

Sometimes things just evolve don’t they?  A thought pops into your head, an unlikely encounter, an innocent email arrives in your inbox that suddenly triggers a whole new event in your life. That is how, despite limited time constraints and caring for Mowghi, this month I find myself about to launch my second book, A LIFE OF OUR OWN.

After A World of Our Own was published many readers sent me emails and letters full of good wishes but they also shared how they struggled with life after a life changing event. I wanted to get on with my first book of fiction but the letters kept arriving and the emails kept happening. Readers wanted to know did I continue to get up in the morning and stay positive. Did I still feel we were in a world of our own? The short answer is No. The long answer is A Life of Our Own.

A LIFE OF OUR OWN is a non-fiction self-help book that attempts to empower the reader to live an authentic life, regardless of circumstance. The wisdom that is embedded in each page comes from Mowgli which creates the difference between my first book and my second book. My first book, A World of Our Own focuses on how I taught Cian in the shadows of systems that failed him. A Life of Our Own reflects on what Cian taught me in the shadow of my own grief. The book is ultimately an exploration of what holds us back from living a life of our own and offers the reader stepping stones back to themselves when life takes them off on a different direction and doesn’t go according to plan.

It is so easy to find yourself floating far away from the life you want. Circumstances can change in an instance that can shift the direction of our lives and before we know it we are dreaming about the life we want to live rather than living it. When my son was diagnosed with Autism life as we knew it ended. Early intervention began to help Mowgli become the best he could be. There is no doubt in my mind, Mowgli’s condition would be a whole lot worse had there been no intervention. He learnt so much on how to manage life with dignity but in his quiet, unassuming way he also taught me how to manage life too, regardless of circumstance.

I have written A Life of Our Own for Cian because his wisdom has the potential to help others and without him in my life I would not have the same depth of understanding that life is truly a blessing and should never be taken for granted. I hope A Life of Our Own will empower the reader to face whatever needs to be faced in their lives with dignity and the strength to embrace challenges while living out an authentic and fulfilling life.

A LIFE OF OUR OWN is published by The Liffey Press and is out now in all good book shops or you can get your copy online at http://www.amazon.com or http://www.theliffeypress.com

 

 

What Autism Taught Me

 

I’m trying to write. A gloomy Donegal sky is sagging low, closing in around the hills.  It’s blowing a gale outside. Hail stones, like small round pills, are drumming against the window above me. Behind me, my ‘autsome’ boy is pacing. Up and down.  School’s out. Kids are in. No day for the trampoline. I know he wants an outside space where he can run and jump, and do what my ‘autsome’ boy needs to do, but the shower of sleet has turned everything white and wet.  There will be no going out for a while. The pacing continues. I read the same line over and over, trying to make sense of what I have written. I am struggling against the noise. Mowghi is making his signature humming sound as he continues to pace. His incessant need for movement hasn’t let up all these years. His need for noise hasn’t either. His favourite music channel on the television is belting out all the latest hits. It’s all noise to me. The computer is playing Thomas the Tank music. I know every quaver, every beat, every tune that’s comes with being subjected to Thomas the Tank videos for almost fifteen years. That’s how long ago autism sneaked in and took up residence in our home, a noisy, pacing, never a dull moment autism that demanded me to be on red alert at all times, even when I’m writing, There is no retrieve, no downtime, no out when autism is about.  It’s the way it is, and another Autism Awareness Month is upon us.  As Mowghi paces, and the wind howls, and the hailstones rattle I commit to paper a list of things that autism taught me of which there are many, too many to mention. In no particular order, here is a random thought list of lessons I’ve learnt from my ‘autsome’ boy.

  • Time is irrelevant.
  • Moments make up life.
  • Treasure the moments.
  • Not all moments are magical.
  • Most moments are little miracles.
  • A lesson can be learnt in any given moment.
  • The lesson is usually a lesson in self-love.
  • Self-love comes from within and reaches out to others.
  • Self-love is unconditional love.
  • Unconditional love has no strings attached.
  • When Mowghi rests his head on my shoulder the world stops.
  • Never underestimate the power of love of any kind.
  • Autism taught me who matters and what matters.
  • Never underestimate the joy of simple things.
  • Joy can find its way through pain.
  • Given time, the pain of loss and grief eases.
  • Patience is truly a virtue.
  • Autism has honed that virtue for me very well.
  • Humour can be found in the darkest of moments.
  • Look for humour always. It’s a life-saving device.
  • So is toilet paper, and I have to look for it too!
  • Hiding toilet paper prevents blocked toilets.
  • Hiding everything prevents mess and is sanity saving.
  • Whoever invented the key should be canonized.
  • Strangers are mostly real life angels.
  • Talking is overrated.
  • Silence is the sweetest noise.
  • An non-verbal person does not constitute an empty mind.
  • A warm bubbly bath can make anything better.
  • Be soooo grateful for any night of uninterrupted sleep.
  • Material things mean little to the soul.
  • The soul celebrates difference.
  • Our human understanding is limited by logic.
  • There is nothing logical about Autism.
  • Autism remains a mystery.
  • Autism grows up.
  • Autism doesn’t always behave grown up.
  • Grown up autism needs help, support and services.
  • People who work with the vulnerable in society are unsung heroes.
  • Acceptance is the first step on any journey.
  • The journey must be experienced.
  • It’s called life, with or without autism.
  • A good giggle is essential to survival.
  • Strive to enjoy the journey.

My boy is trotting steadily towards his seventeenth birthday. Only yesterday I held him, as in the photograph above, at Crummies Bay, Dunree in Inishowen, Donegal, a small laughing mischievous rascal in my arms who knew his own mind and tormented me with his antics. He still does. I still am at a loss to fully understand him, his strange ways, his sixth sense, his breaking down, his frustrations. his wonder, his need for space, inside and outside, his connection with nature, his withdrawal to the sanctuary of his room. As he paces up and down behind me, I clock up a few more sentences, and wonder is he at a loss to understand me too?

 

I’M NOT A BUILDING. I’M AUTISTIC. LIGHT ME UP INSTEAD.

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FIRST PUBLISHED IN THE INISHOWEN INDEPENDENT

Hello World! I’m autistic. Perhaps you know someone like me. In April you will notice buildings lighting up blue on Autism Awareness Day. Awareness is good but acceptance is better. Allow me to explain why and how you can help.

When I am out and about with my family or carer, life can turn stressful. Autism affects all my senses, attention and perception. This means my behaviour is unpredictable. It helps if you are aware of my condition but it helps more if you:

Try not to stare when I’m having a tough time.
Please give me time, give me space, stay calm and carry on. My carer is often my Mum/Dad/brother/sister. She/he needs a break too!

Give up your place in the line.
I have problems standing quietly in a queue. Waiting is an enormous challenge for me. I become agitated and overwhelmed. I can’t help or stop the sensations I feel in my body. Please, if you notice me in a queue, allow me to go in front of you. My family will really appreciate it.

Watch my body language. It’s how I communicate.
When I’m excited I behave like most folk in Inishowen when Donegal wins a match. I run up and down, scream, shake my hands in the air and clap but I can also behave this way if I am hungry, frustrated, frightened, agitated, confused etc. I may have difficulty with words but if you observe me really closely you might work out how I’m feeling or what I need.

Keep me safe.
If you see me wandering around on my own, if you see me in my pyjamas or with no shoes, if I look lost, anxious and crossing streets aimlessly on my own, chances are I have wandered/ran off and my carer is looking for me. Please watch out for me until you find my carer or my carer finds me. Thank you.

Now, a word of thanks from Mum…

Thanks for giving my autistic child the thumbs up…the way you smile knowingly…the way you offer to watch him for a minute until I do what I need to do…the way you say hello to him even though he never says hello back…the way you ignore him when he helps himself to his favourite sweets in your shop…the way you wave my money away…the way you give him a drink and some goodies in the cinema when he gets fed up sitting….the way you open up your shop even though you had just closed it to let him check it out…the way you allow him to sneak behind the bar and serve himself a coke, the way you watch over him when he runs into your premises…the way you didn’t object when he went for a good snoop around, the way you offer to fetch our car when he has a melt-down in the middle of the multi-story car park…the way you didn’t react when he poked through your bag…the way you stopped and asked me if there was anything you could do for me…the way you made our visits to the clinic easier…the way you offer him a treat…the way you make us feel welcome in your restaurant. You will see us again and again and again because we are loyal to those that make every day life possible for us.

When you do that, you light us up, not only in April but every day of the year. Thank you for accepting, for understanding and making allowances for all families with Autism.

 

 

 

IL Papa – Living Simply in Vatican City

Newly elected Pope Francis Cardinal Jorge Mario Bergoglio of Argentina appears on the balcony of St. Peter's Basilica at the Vatican

(Stefano Rellandini/Reuters)

Il Papa—it sounds much more precious in Italian—is a humble man who leads an austere and sober life without ostentation. He lived very simply in an apartment in Argentina where he took care of a handicapped Jesuit and rode the bus to work. I’ve written most of that in past tense because he has now moved house and we all know from here on in how he’ll be getting around.

Most women like the sound of a man who can cook and Jorge Mario Bergoglio is no exception but I’m guessing il Papa will need a little time to re-adjust in his new gaff before he turns the heat up in the kitchen.

Naming himself after St Francis of Assisi the rich young man, who renounced wealth and founded the Franciscan order of friars in 1290 and Francis Xavier, the formidable 16th-century Jesuit missionary evokes images of peace, poverty and a simple lifestyle. When I visited Vatican City with my Mum a few years back—eyes agog and dizzy with awe—images of poverty and simplicity didn’t spring to mind. In the same vein, Jorge Mario Bergoglio’s lifestyle and living on the edge of Buenos Aires is a far cry from the sprawling financial empire he is now in charge of that is dangerously hanging over the edge of reason.

Maybe it’s all the pomp and circumstance that goes hand in hand in electing a new pope or maybe it’s because it’s Easter or maybe it’s their age but my children are asking a lot of simple questions about Catholicism but simple answers are not coming forthwith as I clamour around in the confines of out-dated canonical law shadowed by contradiction, crime and cover ups within the male only Catholic hierarchy. In the middle of  it all sits my fourteen year old drop dead gorgeous autistic. He remains silent, asks no questions and has absolutely no concept of any religion on this earth yet his spirit is vibrating at a level deeper than the foundations of the Sistine Chapel! For him, simplicity is key and so it seems for il Papa.

I wonder what it is like for a Jesuit veteran to be plucked from the far corner of simplicity, adorned in robes and entrusted with the secrets of Vatican City that has not entirely trusted the teaching intelligentsia order he represents because, like my kids, the Jesuits ask difficult, challenging, and thought-provoking questions.

Pray for me, he asked, after emerging from behind the red curtain on the balcony of the central logia at St. Peter’s Basilica. And pray for him we shall because Pope Francis will need all the divine and human intervention he can get as the Catholic Church crumbles and cracks under the weight of great crisis, scandal and conflict in the Vatican bureaucracy. But young St. Francis’ conversion did not happen overnight and neither will the Vatican City’s conversion to spiritual simplicity. That’s not to say Pope Francis won’t make his mark and shake a stick or two.

Let’s hope Papa gets some answers and time to cook, and freedom to hop on a bus. Meanwhile, I’ll continue to keep things simple and cook in my bare feet singing an old Janis Joplin number. ‘Oh, Lord will you buy me a Mercedes-Benz… I wonder did Jorge Mario Bergoglio, while he was cooking the rice and wandering around in his bare feet caring for his friend ever dream of a Mercedes-Benz Popemobile? It’s kind of like a bus…isn’t it?

 

A kiss in the dark

He is sleeping now. There is no sound. All his dragons are slayed. They have been slayed for some months. That is, if there were any dragons. I thought there were but I’m not sure. Perhaps he didn’t like his new sheets. Perhaps he couldn’t find a bead in among all the other beads he insists on lying on. Maybe he got his slippers tangled in the bedclothes, the ones that are thread bare, the ones he never takes off, the ones he loves.

I am not allowed into his room, even when I peer in to see if he is okay. When I push the door ajar he springs up, ready to pounce if I put one foot into his bedroom. Tonight, the lights are off. The lights are going off earlier now and he seems to get into bed quicker. Holding his breath he waits in a sitting position. “Do you need to go to the bathroom.” I whisper into the blackness. “No-oo.” “Okay, well if you do, go before you sleep, okay?” “Okay.” The repetition of my words means that he has understood.

He is still on his guard, however, still unsure if I was going to leave or invade his resting space. “Night night then.” I offer. Before I have time to close the crack his “Nigh Nigh” hurls through the darkness and faster than light itself, I hear the smack and take the full impact of his love. It is all of his own making; the thought, the co-ordination, the shaping and tightening of his lips, making the connections that surged through his body all at once to deliver such a simple thing. I resist the urge to run to him but tenderly kiss the dark before I pull the door between me and him. I can barely breathe. His kiss has taken my breath away.

Only words

 

I chased after them for years. I wanted to hear his words, his thoughts, and his mind until I saw him struggle. Gradually, I realised that words were painfully hard for him to throw and so I stopped wanting, and faced a heart wrenching fact that he was more at ease with silence.

When he struggles to say “Hello,” or “Morning,” his whole body holds its breath to concentrate. His eyes move from side to side like he is looking for something. Perhaps he is looking for the word. It’s in there somewhere, jumbled up in a store that has collected them for thirteen years. It’s jam-packed with words. Sometimes, one or two falls out. Sometimes they get stuck or sound distorted or unclear. Frustration creates anxiety and distress when the shape of the word is not recognised and his attempt at defining his need is misunderstood. That’s the difficultly with words. They have to be understood. They have to match the need to convey the meaning.

He has tried for years and years but words just don’t come easy. They don’t fall out of his mouth like the way they fall out of others. Any word that does, means something. I have watched grown men cry just because a word fell out, a word that really meant something. Not like the gobbledygook that falls out of mouths every day. Much of it means nothing.

We just love to hear ourselves talk. We all have opinions and want to be heard, nothing wrong with that. I strongly believe everyone’s voice has a right to be heard but there are times I get weary of hearing choice words piling up and foaming at the mouth causing nothing but trouble, earache and a swollen ego. His words never do that. They form slowly and take their time, arriving a little later than expected. One by one, they slip out quietly. Sometimes, one or two needs to be forced out, if it is urgent. Most of the time, they have to be prompted and cajoled out. They are usually only uttered spontaneously if his need is greater than his struggle to speak. They tumble from a store full of vocabulary and receptive skills. He can make his needs known, if he wants too, but mostly he chooses silence.

Silence speaks to him. I can hear him listening. The world and I wait to hear him answer. He answers in his own sweet way, mostly in silence. He has taught me silence. Silence is a powerful way to speak when you don’t have the words. Less is more. Even though he struggles with words he still has so much to say. He does not waste the silence. He does not waste words. Words are often wasted, over used and underestimated. Be blessed that you have words. Use them cautiously. Know when to be silent. Words are like stones. Throw them easy. Aox