The Feral Brothers

Charlie and his dog Floyd share one common bond and that is that they seem to be untamable.  Floyd’s speciality is knocking little children over, such is his excitement at the novelty to be near small people who want to play with him.  As he makes his unrepentant leap of fur, tail and tongue I turn to the children’s’ parents and mouth the words “I’m so sorry” whilst desperately trying to call him and leash him.  No matter how frequent the training it’s the same sorry scenario each time.

Similarly Charlie still pipes ups with some verbal abuse if anyone approaches him with a smile and some conversation.  I watch him backing up, starting to bark his warning words and see him thinking “Anymore of this and I’m going code red”.  Charlie is in his second term of school now.  He loves school.  That is to say he loves it all his own way.  He sits in a large classroom with his assistant by himself whilst the other boys learn together in a separate classroom.  He and his assistant chat, exercise, do worksheets, he types stories, they draw.  This is a specialist school where the other boys have problems too.  One boy, if he’s feeling a little emotional and unsettled enjoys repeating everything Charlie says perhaps as a way of taking his day out on someone else or maybe just as his way of coping.  I believe Charlie does warn him but after a short while, can bear no more and if he can physically get hold of him he will hit him with his best shot.  If he is unable to grasp him I believe he shouts “You need chemo, you need to die!”.  Its hard not to wince at that. An ugly leftover from treatment. On the plus side one morning he put pen to paper and began writing and drawing without any assistance, making his way through forty sheets of paper that first day, complaining of cramp in his hand that evening. His teacher handed me his first attempt at the written word. With an arched eyebrow and suppressed smile I read what I’d been telling him not say for months…..”Shhh you must never say the f word”. There is was  brazenly written across the page. “Its a start” I think I mumbled. It was impressive, even by a swearers’ standards. Eight years now autism has been a part of my life and I still forget how literally Charlie takes things. I said he couldn’t say it. I said nothing about the fact that he couldn’t write it. In fact for months if he’s become upset I’ve been encouraging him to draw how he feels. Now our house is full of pictures of characters frowning, crying and gunning down others. A psychologist’s dream.

Last Friday night we had poetry club.  We sat in our bed and watched some of my favourite poets on You Tube.  He moved to the rhythm of the words and their delivery, sat up and slouched with the timbre of the phrase. We had a fantastic conversation about the poem and what it could mean.  The next day he proudly came running to show me the poem he started……

“Took a trip to Snow White’s wishing well,

Thankfully no one fell in it,

Pluto went to an Alice In Wonderland tea party,

Sad Mad Hatter is sadly not the best way for me,

And I don’t have the right answer.”

He performed it and I filmed it.  Somehow he made the words more believable in his delivery.  He sounded like some street poet. It is my very favourite thing to hear.  This week I think he might be a poet when he’s a man.  An abstract one obviously.  Whatever he is, he is definitely a proper little Dadist.

It’s funny the direction your life can take at any point. As I sift through a monstrous box of Playmobil trying to find a wizard’s arm that has been requested I can’t quite believe I used to wear suits and see clients, dictate reports and letters for my secretary to send out to them. Nor can I quite believe I was once offered a job as singer in club in Marbella after my rousing rendition of Tina Turner’s ‘What’s Love Got To Do With It’ drowned out the professionals performance with a microphone.  And as I watch Charlie wearing not a stitch of clothing other than his Trilby and his Wellingtons doing some of his blogging on a Friday afternoon, I see out of the corner of my eye the other little beast dragging his bottom across the back garden and I wonder how it is that despite my best efforts I still have two feral, willful beings in my life and I laugh because they’re funny. And I guess you have to make peace with it and laugh about where you might have been once and wonder where on earth you might be next.

Music for the Soul

Recently I was invited to take part in an award winning programme ‘Soul Music’ on BBC Radio 4.  Each series focuses on a piece of music, ranging from classical to modern day.  For me it was a chance to talk about how music plays a huge part in my daily life and how at crucial times it has given me the energy to carry on.  There is a Light that Never Goes Out by The Smiths was one song I played frequently during the time Charlie was in hospital for cancer treatment.  The importance of this song for me was realised one night as Charlie lay in a hospital bed, when hope was fading and the flicker of his life was on its way out.

http://www.bbc.co.uk/programmes/b04sv2gz

The runner often runs to the beat of a tune which helps him put one foot in front of the other.  Before any poignant moment we often listen to music to focus us, to bring us into an energy field so that we might achieve our best.  The boxer before a fight, the politician before a speech, the surgeon before an operation.  In my case it turned out that it was to raise Charlie’s dwindling spirit so that he might continue to live.

The Smiths were an important band.  Lyrical, intelligent, melancholy and as descriptive as Lowry was in portraying Manchester in their art.  It is fascinating to listen to other people’s stories of the band and the memories they recollect from this song.

Magic

This long hot summer has seen us more and more at the beach.  It is where Charlie is in his purest form, electric with charisma and humour and losing his pants to gravity with the ferocity of his path through the salt water.  The carefree happiness emanates from him.  Standing still on the sand in quiet conversation with himself one minute, then dancing off like a grace note, rolling down the shoreline, squealing in a staccato euphoria, making his strange tai-chi shapes in the air, drops of water falling from his fingertips.  It is a shot of adrenalin to see.  Quite magical.  A sight I never imagined I’d see again.  Charlie crashing through the waves, thighs like Thor, his smile as broad as the sunny horizon.  I point my camera at him thrilling at the attempt to capture him down the tunnel of my lens.

It is a very wonderful life we have but sometimes hard and complicated. This confusing and chaotic world of ours leaves Charlie muttering worriedly, ticking and shouting at strangers.

Given his cancer diagnosis I quite often ponder that he wasn’t even supposed to be in my photo frame.  I think about it a lot these days.  The future, the present, the past.  What really does happen when you die?  What’s the point of all of the now if it is over so quickly?  Big questions wondering if he does get to lead a long life, what might that look like? Will he manage to be independent or will he remain ever vulnerable? Dark and desperate questions every parent of a disabled child has to face.  And then come the questions about his cancer.  The ever present questions hovering in the atmosphere.  Ominous and unanswerable.

But life isn’t always about questions.  Sometimes its feeling his warmth as he leans into me for a hug and a brief moment’s break from Minecraft.  Sometimes its smiling, watching him run into his new classroom and forgetting to look back at me in goodbye such is his excitement to be a part of his new school.  As a girl I remember reading Nabokov’s Lolita and I’ve been forever haunted by Humbert remarking on the absence of Lolita’s voice from the chorus of children at play.   I hadn’t heard Charlie’s voice mingle with the melody of other children until his starting school this September.   These little moments are golden.  These simple, everyday moments and the fact that I still have them.  That is magic to me.

 

Comedy and Tragedy

Today was every autistic parents nightmare.  I had a full tank of diesel and with Charlie and Floyd in the car I horrifying found that my card was declined at the local Tesco garage.  My first thought wasn’t the embarrassment of the some twenty people waiting behind me but that this wasn’t going to be a quick fix, that this was not part of Charlie’s routine and that I was moments away from having to deal with a serious meltdown. Ten minutes in the kiosk and my heart was racing and hands were shaking on the phone to Barclays as I peered out at the car and thought I could see Charlie gesticulating wildly, crying and shouting.  The Staple Singers came on the radio in the kiosk singing ‘I’ll Take You There’.  Laughing, I remarked in too loud a voice “Jesus, I wish someone would take me there!”.  There were a few polite, nervous titters from the people behind me in the queue, probably wondering when the woman with the wild hair that I’d forgotten to brush that morning was going to get it together.  Others rolled their eyes or scowled. Unfortunately I’m one of those people who say inappropriate things when they are a little nervous.  I looked at them in the queue and thought bitterly if only they knew the half of it and I wondered what unspoken mire they were all dredging through that day.  Twenty minutes in and I was close to imitating Basil Fawlty with his mini cooper.  I was breathless with agitation and in a panic.  Finally I was allowed to pay as the fraud restriction on my card, thanks to some dude in Thailand, was lifted.  I bolted back to the car to find the inside an oasis of calm.  Charlie, who hadn’t wanted a toy at Tesco and had opted for a Kelloggs cereal variety pack was engrossed in reading aloud the nutritional information and distribution addresses for each of the little individual packets.  Floyd too was zen-like in the boot.  A hairy Buddha. As there was nothing else to do but laugh I reflected that perhaps bad luck wasn’t personal or part of some grand plan for your life, just totally random, like I was little more than fluffy particle floating on a breeze waiting to bump into something.

A sense of humour has always served me well when we’ve been in troubled waters.  I needed it during Charlie’s MIBG scans, when trying to avoid looking at the almost heaven-like illuminated ceiling above the scanner with blue sky and clouds, his sedated body below it strapped into the scanner looked like a corpse.  As I thought how inappropriate it seemed to make it look like the bloody pearly gates a tiny noise arose in the room.  The radiographers caught my eye across the room and we all looked confused.  There it was again.  Charlie was snoring.  Blissfully unaware.  And it was hard for all of us to stifle the chuckles.  Inappropriate a moment or not, it was funny.

Then again on the day of surgery when pacing around Whitworth Park with a tear-stained face, suddenly from the boughs of the trees there sprang the sound of an African township which made me stand still.  An installation by the Whitworth Gallery, I stood open-mouthed and listened to the sound of cattle, cars and voices shouting “Jambo!” and the absolute absurdity of that moment made me smile. Now when I think of surgery I think of Ghana and giggle.

And lastly on a riverbank this week we waded out looking for fish.  We talked about salmon.  And I got to thinking about that fish and the fact that it spends a large part of its life swimming upstream.  I admire that fish. Some walkers passed by the on the bank and Floyd attacked them in a frenzy of kissing, jumping and wagging due sadly to his poodle genetics.  Heading to rescue them from my over-zealous friend, Charlie began screaming behind me “Don’t talk to them!  Kill them!!” and pulled us both down into the water.  Floyd came running to our aid, the walkers ran away at the horror of us and Floyd’s bags full of poo that I’d been carrying bobbed away on the current downstream  “I’m sorry, I’m sorry” Charlie fervently pleaded.  Wet, stressed and looking round at my lot in life I replied theatrically “Do you know what Charlie?  I am a salmon.”  And we both laughed long and loud about that.  Him because he imagined the head of his mum on a salmon’s body and me because that’s how I cope when the swim upstream threatens to overwhelm me.

 

A Room With A View

This week we rented a beach hut on St Annes Beach.  Charlie was instantly at home.  Trying to run, of a fashion, barefoot up and down the sand, sitting on the deck laughing at the dogs walking past and laughing at the girl from the next hut blowing bubbles our way. We will be doing more of this as we are back to homeschooling.  The mainstream school Charlie started at didn’t last long so we are awaiting news of a specialist school soon.  Mainstream proved very upsetting for him and he became angry and depressed, more anxious than ever at the fact that I suppose he felt he didn’t fit in and couldn’t get his point across.

It’s no coincidence to me that now he is being homeschooled again he has settled down and whilst he is a little bored and more than a little isolated he did manage to go to an appointment with his autism paediatrician which is a first as usually he has to be seen on a home visit.  Although he sat with his back to him and didn’t want to talk, its a step in the right direction.  At home Charlie is the opposite of what he is outside our front door.  He is quite relaxed, sociable, a storyteller with a fondness for jokes and his big hearty laugh I’ll bet can be heard down the street.  He is also the kindest person I’ve ever known.  All that changes when we step out of the front door.  Inside he likes himself, has some self-esteem, learns easily and chats incessantly.  Outside he is fearful of what people think and want of him and he becomes miserable, vulnerable, anxious and unpredictable.  The beach hut is a way of extending our daily walks with Floyd.  Opening up the possibilities of socialising in a natural setting whilst still being able to go into a room and shut the door if necessary.  Even then the hut remains a room with a view.  A breathtaking one. A good view for a person to drink in through the eyes.

For some time I’ve been thinking of setting up a small charity because I’ve been so moved by the suffering I’ve seen.  But a simple charity.  Something slightly ‘work-like’ to give me a sense of purpose outside the day to day life of scooping up lego, reassuring Charlie that there are no bees in the house, cooking and filling in the holes in the garden that Floyd continues to dig.  So it seems its been right in front of me all this time.  Travels With Charlie as a charity.  It’s only purpose to provide families who have been affected by childhood cancer with a day by the sea in a beach hut.  Simple.  There wasn’t a day went by when Charlie was in hospital having treatment that I didn’t wish we were looking out on the sea, when I wished we could hear the cries of gulls rather than the cries of kids having nose tubes or a cannula fitted.  I find the beach the most uplifting, beautiful, hopeful place.  Oxygen levels are meant to be richer on the coast and it’s for that reason that years ago trips to the seaside used to boast of ‘taking the cure’.  Whilst it makes me smile a little, I can’t argue that fresh sea smelling air, sunshine, the wide open horizon and the lapping of the water on sand won’t make a person feel better.  Whilst Charlie was recuperating we would drive down the coast road every day, all through spring from Lytham, past St Annes to Blackpool.  Driving down the Golden Mile that I had always previously found hideously tacky took on a new meaning.  I was still with my boy, although he couldn’t walk and still looked ill, he was still my co-pilot in the front seat, smiling a little as we drove past the sand, the piers, the tourist attractions and looking out to sea at the sunsets every night we found a new routine that seemed to spur us both on and give us hope that things would get better.  And they did.  Come the summer months we would take Charlie’s trike down to the promenade.  Whilst he still couldn’t walk he’d build the strength back in his legs by riding his trike every day until one day in the warm summer sun, next to the waves, he found he could walk a little.  In autumn whilst he was still afraid to do much outside of the house, we would drive through the illuminiations along on the waterfront in Blackpool, through the thronging crowds that were laughing and eating candy floss, past the bright lights and rides twinkling against a black canvas of sky and Charlie would feel like he was part of it. More smiles.  More hope that things would improve.

So for families that have been through the same, a day by the sea, I hope will make them smile, give them a sense of calm for that day, perhaps make them feel that things might get better for them too. A place to make memories and smile over again when they go back to hospital for treatment or for those families who are the other side of treatment hoping never to need to go back to it, or for families who are without the child that their lives were once so full of.  In every situation its a day to be together and that in every way, life carries on and that what you do with it is up to you.  And a room with a view becomes suddenly much more than just that.

Cattywhampus

A little while ago I woke one morning muttering the word ‘cattywhampus’ to myself. I’d never heard it before but it rolled around my head so much that I decided to google it. Oddly enough it means ‘in disarray or disorder’ or ‘gone askew’ and lends itself, I think, incredibly well to describing mine and Charlie’s life.

We are shortly to be living on our own again. My wonderful long suffering parents are due a break. Having sheltered us from another storm Mum has been banished to the garden to dispense her calming wise words through a plume of cigarette smoke amongst the palms, not having been able to do so inside because of Charlie’s health. Dad, ever frustrated at retirement, at not being able to jet off to some distant destination to work has taken to obsessively drawing the amalgamation of Ireland and England as if in some nervous frenzy and has had to curb his rants about our political leaders because of Charlie’s anxiety. There they sit, both divorced from each other years ago, but still co-habiting nonetheless. She smokes, he draws, in an attempt to distract themselves from the lingering question “How has this happened to the grandson we love so much?” Smiling still at the circus that is Charlie and I, they have been thrown over the big top by the arrival of Floyd the dog. Resident sex pest. Tis a complicated and comical household.

Charlie meanwhile has become a schoolboy again at a small village school. He goes for three hours a week and progress is slow as we start the painful process of trying to develop relationships between him and the rest of the world. In truth there are so very few people he connects with even though like a territorial canine he would like to physically connect with the postman each morning. There are still nude days aplenty and I ponder for how much longer it can stay relatively amusing before I eventually have to start telling people he is a practising naturist. And there are many muddled and anxious days and cancer takes a backseat to the ever present, always apparent autism. After five years of tinkering with behavioral therapies, speech therapies, diet and supplements we are still at base camp, the summit hidden in the dark clouds above. While I busy myself this week in creating conversation sheets and comic strip scenarios, in making sauerkraut and kefir I do stop and think it may all be in vain. That he will unravel the way he wants to and do things in his own time. Thankfully most days we are able to head to the beach where between the vast expanse of sky and sand he is able to be who he is with only the clouds watching and can collect his thoughts on life in the peace, the disarray becoming the debris of yesterday’s tide.

On The Pulse Of A New Year

It is the stuff of urban myth that makes out people with autism love dogs. I bought a puppy on the strength of this hoping he might prove to be a calming influence and a playmate. During our first month together it has been absolute anarchy. Charlie has developed a bit of a vocal tick, clearing his throat when stress levels are high. Floyd, as Charlie has christened him, antagonizes Charlie in running away with his toys like a thief. Charlie in the full fury of flight behind him screaming and shouting. And the dog barks back. He has already swallowed the lungs from Charlie’s human body model and chewed his prize collection of Mr Men books. Darth Floyd loves a battle and sometimes the only contact I can see is between Charlie’s light saber and Floyd’s teeth. Not quite what I had in mind. They scrap and trip each other up but slowly I’m hoping a friendship will out because there are times when I see them sitting next to each other or Charlie sticking up for Floyd when I tell him off for whizzing on the floor again.

Christmas too adds to stress levels. It is a delicate time of year for Charlie. Full of too much fuss, tinsel and people. It all lasts a little too long for him. Mistrustful of the man in the red suit and carolling yet delighting in snowmen, baubles, lights and presents. Christmas dinner saw Charlie refusing to sit with us all, taking his turkey dinner and lone cracker into another room leaving Floyd shagging his blanket in front of the guests in a bid for dominance over something……anything. Poor Uncle Peter. All he wanted was a slice of turkey.

Whilst I can imagine a better position for us to be in I sat content as the year closed, grateful to be able to stroke Floyd on my lap and hear the soft snore coming from Charlie who had finally given into sleep.  This time last New Year’s Eve we had just arrived home from another hospital stay. A bald-headed, grey faced Charlie was weak, skeletal and couldn’t walk. Last year was the year he recovered and came to terms with the cancer he has had. It was also the year it became more apparent to him that his autism makes him slightly different to many people. I should have a heavy heart and sometimes I do. But looking forward as ever, I sit on the pulse of another new year thinking if he can do that, what can he achieve this coming year? I have high hopes. We may live in the shadow of a wrecking ball but sometimes the only defence lies in refusing to let that affect the here and now. A few lines from one of my favourite poems for this time of year says it better than I ever can.

“Here on the pulse of this new day
You may have the grace to look up and out
And say simply
Very simply
With hope
Good morning.”

Maya Angelou “On The Pulse Of Morning”