The Whales

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Blue Whales
Thirty-eight million years
Of evolution
Have fine honed the ability of whales
To communicate,
To play with sounds and frequencies,
Tying them to an under-water reality
That is magical, mysterious,
And connected.

We cannot understand what is perceived
Or shared between whales,
Using sound vibrations
But their intent is to connect
With each other,
Through the vast, dark depths of the ocean.

It is a tragedy of man-made effort
That whales once could call
Across hundreds of ocean miles,
Effortlessly,
And reach out to their kin,
But humans have polluted the seas
With mindless, maddening noise and machinery
And the vibrations emitted by whales
Are lost too soon, amidst the din of modernity.

As humans we have, in the blink of an eye,
Acquired the ability to communicate globally,
Effortlessly,
But instead of connection
We are more isolated than ever before.
We have grown apart
And connect in a strange mercurial
Cyber-land that is littered with
Uncertainties

Yet sometimes still, we find ourselves,
Like the whales,
Seeking out the closeness of connection,
Channelling extra-sensory perception
Navigating frequencies
In search of one that may
Match our own.

And we remain
Constantly alert to possibility,
Searching, seeking,
Sending out our frequencies.
Restlessly waiting.

 

10 July 2016.

On art and creativity, the Royal Academy Why & How Conference & magnetic moments

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Stellar Adler

“Life beats down and crushes the soul and art reminds you that you have one.”

Stellar Adler, American actress and acting teacher, (1901 – 1992).

There are moments in my working life when I feel truly blessed and thrilled beyond words at the invitations that find their way to my inbox. There are times also, when I wonder what path I have set out on, that is so challenging, lonely at times, devoid of recognition or appreciation. But that is another matter.

An invitation from Molly Bretton, Access Manager at the Royal Academy, London, to deliver the opening keynote presentation for their second annual Why and How Conference – engaging children with SEN in creating art and cultural experiences, has been one of the greatest delights of my professional life. I have loved this event, Saturday 19th March 2016, truly, madly, deeply.
Royal Academy
Here is the Reynolds Room, the venue for my opening Reith-style lecture, and closing panel discussions. The logistics of hosting a conference taking multiple gallery rooms on a busy working Saturday seemed vast, but all was handled with ease and efficiency.

I have been impressed with every aspect of the event – the venue, unfamiliar to me (guilty confession, keen to make amends), the programme, the workshops, the food, the people. Perhaps I should say ‘the good people’, echoing Susan Potter’s closing comments. It has been a journey of discovery, with so many magnetic moments. Of which, more…

This conference invitation has also held challenges for me in several weeks of deliberations: what shall I say, what form will my presentation take, am I using visuals, can I really expect an audience to listen to me, alone, for the duration of my allotted 50 minutes delivery time? I am of a mind to think, how shall I occupy my time now the writing of this great beast of an 8,000 word lecture, is complete. Or at least, the significant part of my task is over. My bibliography is still a work in progress.

I will not revisit my lecture here, but instead, the thoughts that flood my mind are the abundance of good, joyous, uplifting conversations with strangers who have been as dear to me as the most familiar of friends. There have been so many remarkable, inspiring, ridiculously funny and moving moments, borne out of the passion, insight and hard work of so many individuals and teams, setting out to inspire and bring creativity to an audience that includes some of our most vulnerable young people in society.

In my lecture I referenced a phrase I heard once on the radio, some years ago, but never did discover its origins. So I have seized upon it, eager to popularise its use. It is ‘magnetic moments in time.’ They are the moments that create a lasting imprint on the mind, so that, long after the details and minutiae are forgotten, there is an impression there, that lingers and attaches itself, like a magnet to our heart.

There have been so many magnetic moments this day.

In the workshop, Illustrating a journey of engagement with children with SEMH, the presenters, Jhinuk Sarkar, Robin Johnson of Keddleston Schools and Matthew Johnson, Outreach Officer at Nuneaton Museum and Art Gallery, shared some of the museum’s Inuit artefacts. Aside the very serious matter of how best to engage with young people with SEND, the workshop allowed us to explore the artefacts and create our own block prints. It was the most unexpected delight! I have to confess, though, finding the artefacts in much demand, my attention was caught by some fine bust of a gentleman on display in the Saloon.
November 2015  - February 2016 314

I suspect I shall not be in great demand for my print-making, but I am so keen to find further opportunities to explore this beautiful craft.

In the past I had some fanciful notion I would attempt to recreate the William Morris prints of animal and nature, scenes that I so love on post-cards and wrapping paper. And then, and then, create for myself prints of my own design on wrapping paper. How simple it all looks, but how complex the design and detail…

William Morris prints

 

 

Little way to go, huh?

 
The second workshop I attended, Understanding Creative Empowerment for Children and Young People with Learning Disabilities, with Corali and Greenside School, was also breathtakingly fantastic, unexpected, slightly surreal and almost spiritual in its beauty. Coralis use a partnership, performance-led, mixed-media methodology to provoke and discuss inventive and original ways that children and young people with LDD can be artistically and creatively empowered to engage with the arts.

Corali are the heroes of my heart. Whatever your audience, children, young people with LDD, adults, the corporate world, emotional and mental health and well-being, the potential is huge. I feel bereft already that I am missing my dancing partners, as we swirled and swooped and caressed and tip-toed on our precious object, inspired by the environment, a stretch of red velvet fabric.

What a privilege also, in a one hour workshop, to be gently encouraged to move and dance and create, and to conjure up such inventive scenes, around flowers, a bowl of fruit and a piece of red velvet. My words cannot do justice, but I was, and am, captivated. I loved the gathering around to watch the instant video playback of our shared movements, and performing as a group before a video backdrop of our earlier work.

In all the excited chatter with my fellow dancers, we decided that we each took on different persona, as we played and indulged our inner creative selves. One lady in the group was constantly tuned to practical uses of our precious red velvet; another erupting into bull-fighting drama and peek-a-boo scenarios, with another using the red velvet to soothe and caress. (I was told I was majestic, with my red velvet, so I will stay with that, thank you).

Sadly, I did not have time to attend all the workshops on offer, but with such a richness of choice, and in such a beautiful setting, how could delegates fail to be impressed?

Bringing together events like The Royal Academy’s Why and How Conference, is a challenging task. It takes great insight, courage, tenacity and flair to bring such diverse elements of a complex and ever expanding field of expertise together, in one venue. My hat goes off to Molly Bretton for a truly inspirational event.

I must also mention the precious joy of meeting colleagues I have only conversed with by phone, or have met too little – Noel Hayden, SEN Programme Manager from the Museum of London and Dermot Dolan, Training and Partnerships Manager of Whizz-Kidz. Dermot’s cheery greeting was the sweetest moment.

And then, there were the post-event discussions and far ranging chatter with Molly Bretton, Rachael Christophides, who so expertly chaired the close of day panel discussion, and Paul Anderson Morrow, artist, teacher and workshop presenter. Well, that was a world in itself. A brilliant end to a perfect day! Slight matter of my missing my last train home, aside.

chinua achebe

Art is man’s constant effort to create for himself a different order of reality from that which is given to him. Chinua Achebe (1930 – 2013) Nigerian novelist, poet, professor and critic.

 

 

 

 

 

 

 

 

On fear, finding new oceans and fortitude

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Fear (1)

Choice, or otherwise, fear lives in us all. When once encountered, fear is a remarkably persistent character, slipping around our shoulders, yapping at our ankles, lingering in the quiet still hours, keeping us wakeful when we’re desperate to sleep.

It may be fear of serious illness, of facing an uncertain future, of the end of a long term relationship, or fear in some insidious guise, free-floating,  drifting to suit a mood and context. Life is uncertain and fragile. We do not have to look far to find suffering, anguish, unhappiness, or witness troubled lives racing fast to perilous outcomes.

Fear is defined as ‘an unpleasant emotion, caused by the threat of danger, pain or harm.’ In old Saxon forms of the verb, fear becomes ‘faron’ and translates as ‘to lie in wait.’ Old Norse terminology echoes this definition, with ‘faera’, ‘to taunt’. It does seem that fear taunts us, goads us into behaviour we would prefer not to display

Walking to a hospital appointment on a sharp, frost-laden day, watching the morning sun rise and beat out the blue, I was lost in a reverie, contemplating fear. I have known fear intimately since my breast cancer diagnosis, some three years ago. The fear of dying from my cancer lingers. Two years on, and cancer free, I confront those fears each time I revisit the hospital for check ups, scans and general health reviews. I recognize that, and wish it were not so, but I seem powerless to rid myself of the burden of fear.

Once in my life I have been close to death, a very real close encounter when infection caught hold during chemotherapy and spread like a wildfire through my body. By the time I had appreciated the seriousness of the situation, my mind was compromised, responding poorly to the need for help. Sleep seemed the answer. The desperate desire to sleep, to ease the pain through oblivion.

It was 3am when I was eventually admitted to hospital, after a series of administrative blunders, and poor advice. My temperature had soared to 41 degrees, my blood pressure had dropped, my pulse racing. I had no comprehension of what was happening to me, but somewhere inside I knew, if I fell asleep alone in my home, I might not wake up again.

I was diagnosed with neutropenic sepsis shortly after admittance, and remained in a negative pressure isolation room for six days. For much of that time, those early days, it was hard to have an interest in living, when my body seemed so incapable of sustaining my life independently. It was then that fear retreated.  I was unafraid.

That feeling of slipping away from the world is so poignant in the Bruce Springsteen song, Streets of Philadelphia, about a man confronting his own imminent death after contracting AIDS.

The night has fallen, I’m lyin’ awake,
I can feel myself fading away,
So receive me brother with your faithless kiss,
Or will we leave each other alone like this
On the Streets of Philadelphia

Fear has taken up residence in my heart. Just when I think it is safely out of sight, tucked in some recess in my mind, it leaps to the fore with a vengeance when I revisit the place of my darkest hour: the hospital cancer wards. Memories of my year long treatment, the anguish, heartache and physical dread of chemotherapy, comes flooding back with an urgency that takes me by surprise as I walk familiar corridors.

If I have lost confidence in myself, I have the universe against me. Ralph Waldo Emerson.

Fear is the very absence of confidence in our ability to protect or preserve our own or others safety. It is the emotion that betrays us, when we think we have put on a brave face, or kept our true feelings in check. Fear is the tears that fall, unexpected and uncontrolled, when confronting our dread. It is the anxiety in our heart when we feel out of our depth. It is the nightmare that torments us with alarming regularity.

Finding some way to build our resilience, to have fortitude in the face of adversity, must be our goal, yet it is not easy. I have been fascinated by fortitude  since my teenage years. It is not an attribute hugely in fashion. It is largely an unused, rather archaic term. As an inveterate re-reader, I have cherished and long adored the horse-lovers’ trilogy and multi-dimensional novels, My Friend Flicka, Thunderhead and Green Grass of Wyoming, set in the ranch lands of Wyoming in the 1930s.

In these novels, the all-seeing, all-knowing mother, Nell, sees the challenges her two sons face and has conversations with them on important themes. In one, she talks of the need for fortitude.  Reading that as an eleven year old, it brought wonder to my heart. This was something teachers never talked about at school, the idea that we might develop fortitude, to find our own inner strength when our external environment sadly failed to protect as we might wish. These books, and Nell’s little sermons, opened up a whole new world of insight and knowledge. How do we manage, not what is happening around us, but what is happening inside of us, at our very core?

The Sky Atlantic drama, Fortitude, is set in the fictional Arctic town of Fortitude. Aside from having a remarkable and intriguing plot, and quite mesmerising theme music, it fascinates because each character is tested to the limits of their fortitude. The environment is an immediate and obvious challenge, but so too, are a myriad obstacles, internal, external, metaphorical and literal. There is not one person free from challenge, from inner turmoil, from anguish, yet still lives must carry on, children fed, work tended to, relationships managed, against this threatening backdrop.

There are many ways in which we can sustain ourselves, but finding what works for us, what reduces or alleviates fear is a personal matter. It is trial and error too, and it is having the courage to reject what others may feel is ‘good for us’ in favour of our own personal responses. The need to work constantly to restore poor mental health, or build better frameworks to sustain good mental health are imperative, yet they are skills too infrequently taught in schools and in the workplace.

I used to describe the local National Trust property, Baddesley Clinton, as my private sanctuary, a place I visited often during treatment. Walking alone around the lake, observing the great changing beauty of nature, I felt a great sense of peace, a freedom from fear or anxiety or anguish. It kept me safe, restored me for the journey home and that great rushing in of the world once more.

New oceans quote

Fear may live in us all, or reside in our hearts during times of duress and challenge, but it need not always be that way. There is a need to find a balance too in our understanding of the self, our mental health concerns and our environment. It is the ability to recognize that which helps, and that which hinders our journey away from fear.

How much do we work on our inner dialogue, striving to understand our emotions and motivations, and how much do we consider our environment, the very real living space we inhabit, the people we surround ourselves with who may be unwitting accessories to fear?

I like the idea of new oceans to explore. Taken from a vantage point of vulnerability or of strength, out there, new oceans await us. We must first, have the courage to lose sight of the shore.

 

 

 

 

 

On Brave the Shave, living with cancer through remission, and why charities get it wrong some times.

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Oncology sign

I played my usual Wednesday evening social mix in tennis this week in less than perfect weather conditions, but agreeable as always. My attention was drawn to the exuberant man on the adjacent court whose head was entirely shorn of hair, and I was perplexed at first, thinking it rather an extreme look, until I remembered about this latest Macmillan Cancer campaign, Brave the Shave.

It is strange, but my peace of mind was disturbed all evening, as conflicting emotions raged on. Despite rational me prompting that I should congratulate and applaud the commitment and the fund-raising endeavours, emotional me felt angry and cheated, and very much misunderstood. How can anyone, in some gleeful fit of enthusiasm, compare having their head shaved with the hair loss that occurs as part of that awful fall out of the most poisonous of drugs, chemotherapy? And the congratulations and high spirited comments of others, feel strangely out of place when we think of the real reasons people lose their hair through cancer treatment and the emotions that are attached to that loss.

It is where I, as an on-going patient, frequenting the oncology department on a regular basis as my cancer iies in remission, am at odds with Macmillan, the charity that has driven cancer research and funded endless rounds of support, training and publications. It is where I am at odds with this craze for thinking that publicity stunts can solve a world of problems on our doorstep. Should I be grateful that Macmillan Cancer are pushing with a frenzy this drive for everyone to shave their heads through the month of August? Perhaps it is most remiss of me, but I don’t feel grateful at all.

I have no pictures of me during that time when I lost my hair, which is now over two years ago. I don’t mind that, as for the most part, I looked like some awful zombie creature (there’s a character in Buffy who really struck a chord) with fattened cheeks and sunken eyes, as much a result of the steroids and anti-sickness drugs, as sleeplessness and worry.

I have a few pictures of me attending family and social events, with a scarf draped around my head in an attempt at a Zeta Sackville-West style glamour, when I was tired and sick of my bandana. I have no pictures of me when I lost my eyebrows and eyelashes, and all bodily hair, a stage that comes just a few weeks after the first rush of hair loss.

It was in that time that I stopped looking at people. The few journeys out that I made on a needs-must basis, to the supermarket or petrol station, I did without making eye contact at all. Not with shop-keepers, or till assistants, or casual acquaintances bumped into in the vegetable aisle. I kept my head down, and found myself looking away, if anyone tried to haul me into focus.

In all my years of working with children and young people with SEN or disabilities, including Autism and other socially-related disorders, I felt for the first time a kinship with those who cannot bare the gaze of others.

There is something of a shame attached to feeling so very notably different. Hair loss, and the bandana, is one thing. Losing one’s eyebrows and eye lashes, for me, became the straw that broke the camel’s back. This total hair loss, occurring as it does, some weeks into treatment, seems also to coincide with a time when the road ahead seems long and gloomy, when spirits are low and energy reserves run dry.

I found it highly distressing, all those months of treatment, and intensely traumatic, if that is not pushing the boat too far. It begins with the optimism that this breast cancer will be removed with surgery, and perhaps a quick blast of radiotherapy, but that becomes, in reality, a long drawn out process of surgery, recovery, illness, recovery, chemotherapy, illness, neutropenic sepsis, hospitalization, recovery, radiotherapy, recovery… And all the time, those same sad faces appear, like clockwork, in the chemo ward, or in some other waiting room of despair, as those many hundreds of people diagnosed around the same time, are awaiting their endless round of surgery, recovery, chemotherapy…

I could not help my mind thinking as I replay the events of my Wednesday social tennis, that in order to support and empathise with cancer patients, if that is the point of this exercise in fund-raising by Macmillan, then how much better to say, rather than Brave the Shave, why not visit a hospital ward (in good health of course) and sit with patients as they while their time in the waiting room, or endure hour after hour of the poisonous drug dripping into the veins. Or shop for patients who live alone and are in need of basic essentials or company, or who struggle to get to their local health centre for their daily round of injections, post-chemo.

There is an endless need for support, and it is support that, despite the ‘you need never be alone with cancer’ glossy adverts, in effect is so frequently targeted at those with terminal cancer, on end of life care, not those enduring the solitude of treatment.

I discovered that when I asked for help from Macmillan cancer at a time when I could not bear any further treatment and wanted to opt out of my care plan. Alone in my house post-chemo, I cried for seven days almost non-stop after one particularly horrendous session. The carefully spoken and scripted support from a telephone help line left me more enraged than supported, or understood.

What stays with me, long after the horrors of treatment and the absolute dread of that chemo ward, are the pitiful cries of women and men, some in their seventies or more, calling out in pain and fear as the nurses tried many times over, to insert the cannula that administers the drugs that pour in, often over 8 hours.

Such awful horrors. Such pitiful states. And the young man sitting next to me on two chemo sessions, as our timings coincided for treatment, covering his face in shame as the tears flowed, despite his brave and hardy youth. And my own fears and horror of needles and chemo and the after effects of the drugs – they lie, waiting to re-surface, for my next check up, for the next moment I feel particularly vulnerable, to the lingering torment of the emergence of secondary cancer.

So, unsure whether the fault lies within me, still I say, before you Brave the Shave, consider how else you might support, what else you could do if you are keen to make a difference to the lives of those who are suffering cancer and its treatment. Appreciating the month is almost out, I believe these charities, with Macmillan firmly in mind, for all their research, social media and glossy adverts, do those they seek to support a misjustice many times over, when they prompt behaviours that are less than sensitive to need.

Quotes about being strong

PS For all those of you who have Braved the Shave, I do appreciate the gesture and am absolutely sure your support will make a difference.

On turning tragedy into triumph, A level results, UCAS, clearing and the need to re-frame thoughts.

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On A level results day in the UK, sharing a post that I hope will be helpful to those who have not achieved the grades they anticipated.

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Teenager unhappy (2)

Sharing a post from August 2014, on A level results day in the UK, with a post-script one year on.

“Facebook is not a good place, at times like this.”

Most often writing in a professional capacity, I am blurring the lines here between professional and personal as I share thoughts on A level results, UCAS and the clearing process from first hand experience, or rather, share (with my daughter’s consent) something of our experiences on Thursday 14th August 2014 – A level results day in the UK.

My daughter did not achieve the grades she needed for her first choice university, or her insurance choice and the message displayed as she logged into UCAS in the early hours of Thursday morning was one of rejection. It is a stark message that sugar-coats nothing at all, but marks the passage-way to clearing.

I would like to say I was there…

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On literary festivals, beloved authors and the joy of new book discoveries

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Photo collection 2014 - 2015 - Heather's ipad 411

There is an undiluted pleasure in attending literary festivals, large or small, that never dims. It is the excitement of the accidental encounter, brief glimpses of a worshipped author in the book tent, or the slenderest acknowledgement over a book signing, that keeps alive an air of fevered anticipation. It is an added bonus that many are held in the most wondrous historic settings, peppered with centuries old stories of their own.

So, in advance of Saturday’s visit to Althorpe’s Literary Festival, I was as eager as a child on Christmas Eve. Although, on this occasion, given a certain constraint of time, the purpose of my visit was a focus on one man, and one talk.

The cause of my excitement? Bernard Cornwell discussing his only work of non-fiction, Waterloo.

Author Bernard Cornwall. Photograph by Felix Clay.

Author Bernard Cornwall.
Photograph by Felix Clay.

My admiration for Bernard Cornwell is fairly recent, despite my years of devotion to the tv adaptations of Cornwell’s Sharpe books, played to perfection by the brilliant Sean Bean. For some reason, I had never read the books. I do not know what set me on the path to righteousness, but I read my first Sharpe book maybe two Summers ago, and I have been hooked ever since.

I began to obsess over reading each Sharpe book in the correct chronological sequence, battle by battle, so that books I had already acquired had to lie in wait till the right moment.

My reading for a while comprised only Bernard Cornwell. I could quite happily and without effort fill a whole family conversation with Sharpe’s exploits at Assaye, or Copenhagen, or mulling the terrible plight he faced at Seringapatam.  I have since detoured out, with new authors introduced and old ones revisited, but the remaining few Sharpe books I haven’t read are there and waiting, for times needed, and a July holiday in France.

Cornwell did not disappoint, and nor did Althorpe Park, much that the fairly constant rain on Saturday created a slightly gloomy canvas. I met with some wonderful and delightfully engaging people, and had long conversations over coffee and a meandering walk to the lake to view the island where the late Diana, Princess of Wales, is laid to rest.

Cornwell did not disappoint is a huge understatement. He was brilliant! At one time funny, articulate, clever, responsive to his audience and their various desires and to his host (whose name I never did catch). He is a show-man, seemingly as much at home before an audience as he is researching his next work of fiction, or delving with meticulous detail, into the lives and stories of those men who lived and died at the battle of Waterloo. His command of his subject matter is extraordinary. I had a moment of self-congratulatory pleasure at recognizing place names and key characters as they featured in Cornwell’s talk. Years of interest in military history has served me well.

A gentleman to my right extolled the delights of Cornwell’s Warlord Trilogy, and so enthused me that my next reading, beyond Sharpe, is assured. Rather pleasingly, he was as knowledgeable about Sharpe as a person could wish. I was enchanted from beginning to end.

I adored the impromptu casual exchange between Cornwell on the platform and Andrew Roberts, author of, amongst other literary works, Napoleon the Great, in the audience. Their exchange was beautifully timed and rather delightful. At Cheltenham Literary Festival, I was enthralled by Roberts as he talked of Napoleon in the faded grandeur of Cheltenham’s Town Hall (still a most beautiful building).

I was thrilled also, later in the morning, to find a few remaining signed copies of Waterloo in the book marquee, something I feared I had missed, as the book-signing tent was full to bursting immediately after the talk and Cornwell was leaving the event early.

Photo collection 2014 - 2015 - Heather's ipad 412

Such days are times to treasure. Literary festivals give life to a place, to books and people yet to be discovered, or long-loved and familiar. They are extraordinarily rewarding events, in the conversations that emerge as people share their passions and in the connections that are forged. There is something rather special about hearing a long-admired author talk so passionately and eloquently about their creative works.

Battle of Waterloo

So, dear reader, what literary festivals do you indulge? What authors inspire you to absolute devotion and what moments do you savour of these wondrous events? Wishing you a glorious festival filled Summer.

On Terra Incognita, the age of exploration, the rise of the hero and the limits of possibility.

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On the anniversary of Robert Falcon Scott’s birthday, here is my tribute to the great man, written January 2012, but worth a re-visit.

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What a title to live up to in this post that sees me immersed in new discoveries about our past explorers of Antarctica – Captain Robert Falcon Scott and Sir Ernest Shackleton. By chance, coincidence or design, my discoveries have been instigated by my son’s purchase of a rather nice Folio edition of Scott’s Last Expedition, in the year that marks the 100th anniversary of Scott’s ill-fated journey to the South Pole. I have become fraught with a thirst for knowledge of Scott and Shackleton and for what drove them on to challenge themselves to the very limits of possibility.

Self promotion first (it’s all ‘me, me, me’ springs to mind – the glorious Stephen Fry in  Sherlock Holmes..) I am tweeting extracts from Scott’s Last Expedition, on a day by day basis, @ScottsDiaries, and also, doubly binding my long-suffering followers on @HMStack with further extracts and my…

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On autism, the complexity of need against ability and school placement issues

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Outdoors portrait of cute 6 years old child boy

I have a friend I have known many years, since my twenties (oh, for those halcyon days again). Her son was born around the same time as my son, before my total immersion in the world of special educational needs. But her son’s progress and development did not track that of my son’s or that of most other children.

This young boy remained silent in his pre-school years. My friend’s dismay was charged to action. The children she thought were influencing her son’s silent world were banished from his life and new friends sought. In the search for schools, my friend approached a local and well regarded private school where small numbers meant her son’s fear of change and meeting new people could be accommodated. She was fortunate indeed to have that opportunity.

My friend’s son shone at music and reading. He was quite the academic and equally, excelled at sport, but friendships remained problematic and understanding social situations, even more so. There were meltdowns and difficult moments (the school’s expectation of all performing in the annual Christmas production!) But, this all-age, small in numbers, 4 – 18 school catered for this young boy’s needs and grew to know him and his idiosyncrasies with immaculate attention to detail.

I pondered my moment many times over whether to intervene, but on each occasion, was pulled up short with my friend, who would hear nothing of her son’s difficulties. Her focus was fixed on his ability – his music, his sport, his love of books and reading.

During my year studying Childhood Autism at Birmingham University School of Education, under the guidance of the brilliant Dr Rita Jordan and Dr Glenys Jones, I was more anxious than ever that my new found knowledge was put to good use. But still my attempts to support or offer suggestions, along the route of moving towards diagnosis, were rejected by my friend.

In the present day, my friend’s son has a 2:1 degree from a Russell Group university with a bright career ahead. Friendships and social situations remain problematic, but they are managed lovingly and carefully by the family and all those involved in this young man’s education and independent life.

The problems that I saw as being insurmountable, life-long and complex, have been surmounted., although they may always remain present. My friend’s decision to stay with, at all costs (and challenges in meeting fees) an all-age small private school, has paid dividends.

I wonder if this young man would have entered university at all, with a Statement of SEN for ASD? I wonder if his path through school would have been as secure, as supported, in a mainstream setting with all the funding and support allocated to children with SEND? 

Cases like this challenge our thinking and it is good to be challenged.

So, in recent times I have been intrigued to read of one woman’s battle to find the right school for her bright son with ASD, a battle that has progressed so far that she has opened up her own school – The Rise School, a free school for children with autism.

Every morning Alex Paulson, a nine-year-old boy passionate about astronauts, is picked up from his home in west London by minicab and driven to his new school in Feltham.

The school, which is housed in a prefab grey bungalow that resembles a Tube train, has no bells, no fluorescent lights and no more than eight pupils to a class.

Alex is a pupil at a pioneering free school for autistic children set up by his mother and two major charities. Frustrated at the lack of state and private-sector options, Charlotte Warner, a mother of three, set about doing the seemingly impossible, finding the funds, the people and the wherewithal to set up a specialist school from scratch. It’s called The Rise School, it opened in September and it has just 32 pupils, all of them autistic.

I see parallels in the approach this mother has taken, in establishing The Rise, in the model of provision chosen by my friend, astutely recognizing the difficulties her son would face in the large, rambling open spaces of the many state schools she had visited in her search for her son’s first school.

There are significant differences however.

My friend chose never to go along the route of diagnosis, despite a very clear understanding of the difficulties her son faced. In the case of The Rise, this school will accommodate the needs of those children with a diagnosis of ASD whose academic needs might otherwise (too often, I would say) be over-looked as the focus and scrutiny remains on difficulties and deficits.

I am interested currently in recent discussions with the parent of a child in Year 6 (UK schools) who has a diagnosis of ASD. The parents have expressed a preference for a local Grammar School to be a first choice secondary school for their child.

Now, here’s a challenge again.

How many of our Grammar Schools, if any, would say that they could meet the needs of a child with a Statement of SEN? The Statement alone would seem contra-indicative and point to needs a Grammar School is poorly equipped to meet.

Yet there is a logic and strength in the argument that this is the right place, on many levels, for a child with high academic ability and a need for structure and a working pace that begins at a challenging and appropriate academic level.  

I will be interested to follow the progress of this particular case, and, as with many, interested and keen to support the development of other schools based on the model of The Rise, after a period of transition and review.

The escalation in the numbers of children and young people being diagnosed with Autistic Spectrum Disorder is a challenge and one that all local authorities must meet, with ever constrained resources. We are in danger, as a nation, of seeing only the difficulties, of the cost of meeting needs.

It is high time a focus was placed on the worth and value that young people with ASD bring to our schools and communities, and the untapped potential they offer to our leading universities and institutions. For that to be achieved and realised, we all must recognize the strengths and abilities of the children and young people with ASD we meet and work with, as part of our daily routines.

Wishing the best of fortune to mothers like my friend, and Charlotte Warner, and mothers around the world who recognize talent and ability in their children. It is time to come out of the shadows and shine!

Quotes about children

For more information about the University of Birmingham’s School of Education, please follow this link – 

http://www.birmingham.ac.uk/schools/education/index.aspx

To find out more about The Rise at Feltham, follow this link – http://www.theriseschool.com/

To read The Guardian’s article on The Rise and Charlotte Warner (1st Nov 2014), please follow this link –

http://www.telegraph.co.uk/education/primaryeducation/11200657/Inspiration-for-life-in-the-mainstream.html

On turning tragedy into triumph, A level results, UCAS, clearing and the need to plan for alternative avenues.

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Teenager unhappy (2)

Sharing a post from August 2014, on A level results day in the UK, with a post-script one year on.

“Facebook is not a good place, at times like this.”

Most often writing in a professional capacity, I am blurring the lines here between professional and personal as I share thoughts on A level results, UCAS and the clearing process from first hand experience, or rather, share (with my daughter’s consent) something of our experiences on Thursday 14th August 2014 – A level results day in the UK.

My daughter did not achieve the grades she needed for her first choice university, or her insurance choice and the message displayed as she logged into UCAS in the early hours of Thursday morning was one of rejection. It is a stark message that sugar-coats nothing at all, but marks the passage-way to clearing.

I would like to say I was there right from the start, at 6am, but we discussed how the day might roll out the evening before, and that was not how events unfolded. My entry into her highly charged world of phone calls, endless open screens on her lap-top, Facebook pop-up messages and a constantly bleeping phone, came about part of the way through the morning, when emotions had calmed and discussion was possible.

Champagne and celebrations

What was part of the plan was champagne in the fridge, a table booked at a favourite restaurant, my daughter’s friends arriving in the afternoon and a late night out for a celebratory evening of clubbing.

All the pieces were in place for a perfect day, but those damned results, and an unexpectedly poor fairing in one paper (now subject to a remark), threw the day, and my daughter’s future, into turmoil.

It is an emotional roller-coaster of a day when results do not go as expected. The torment experienced must not be under-estimated.

How dreams can be shattered in an instant.

It is a failing of our education system that success must be measured by exam grades and a resolutely single-route into university. Consideration of what alternatives may also be possible futures, or what lies beyond Plan A, when back up insurance offers are not an option, is limited. There is little emotional or practical preparation or support for students whose grades do not meet requirements. Minds that are blasted by rejection are not in the best fit state to begin negotiating alternative offers in those 24 – 48 crucial hours after results are released.

Which? University recently ran a poll of over 1000 students to consider how many had a back up plan if they did not achieve the necessary grades for their university choices. Over half of those polled had no back up plan. For more news on this story, here’s a useful link from TES Connect – http://news.tes.co.uk/b/news/2014/08/05/half-of-would-be-university-students-have-no-back-up-plan-if-a-levels-fall-short.aspx

The timescale to act on results day is exceptionally harsh.

Within 48 hours of clearing opening, decisions must be made and verbal offers from universities accepted and confirmed. Everything happens at lightening speed, so that all the leisurely months of browsing university handbooks, or attending open days seem absurdly remote when decisions about where to study need to be made – and made fast.

But even where speed and the need to act quickly is a necessity, the need to plan is even greater.

After breakfast (in bed on this occasion…) my daughter and I made a plan.

The first need was to prioritize universities to be called on their direct clearing number. We drew up  –

  • A list of all universities that had been considered at the beginning of the year
  • A check to ensure that the university were offering the course wanted through clearing
  • A contact phone number list for clearing for each university
  • A second list of universities offering the same or a related course
  • For each university, the UK ranking was noted along with the clearing phone number
  • For each university, my daughter considered her preferences on a 1 – 3 star rating

The best laid plans must still be subject to testing!

We soon discovered that the top-ranking universities, the Russell Group and those within the top 50, had long waiting times for calls to be answered, from 18 minutes to 32 minutes. That is a long time to hang onto a telephone! It is also a prohibitively long time to wait when the need to gain a number of firm verbal offers of a place is paramount and the hours in the day fixed.

The first hour of my daughter’s call time to universities was a relentless round of frustration and increasing despair with a complete failure to get through to speak to anyone. Several universities had phone lines that had collapsed under a siege of calls. Messages were being relayed via Twitter – please tweet your query here and Sam will get back to you. Very modern day, but very little real help (try condensing anguished emotions and queries into 140 characters!)

Our emotions are a precarious thing. They can be a blessing or a great burden. The emotional toll of the UCAS clearing process is great. It subjects young people, feeling at their most vulnerable and dejected, to a barrage of instant decision making with limited personal interaction or support. There is little to engage or buoy the spirits.

A change of tactic ensued which began to produce results.

Rather than prioritizing the top ranking universities and the long call waiting times, my daughter began to look at others, working her way up from the bottom of the list to the top.

The results were impressive and dramatic!

Within 20 minutes of calling lower priority universities (according to the list we’d established earlier), calls were going through instantly to admissions, and then to departments. Two offers were made from universities within a matter of minutes.

The mood suddenly lifted.

I have never felt so jubilant for my daughter as that first offer of a place at around 11.30am! And how that success became a catalyst for even greater success.

Quotes

Within two hours my daughter had verbal offers from five universities, all offering the course she wanted to study or a close match. It is ironic that many needed higher UCAS points than her first choice university that had, not more than a few hours before, rejected her, but still the offers came in.

Then began the process of deciding whether to continue seeking offers, and trying to bag an even higher ranking prize, or whether to capitalize on gains?

Do we stick or do we deal? 

We decided to stick with our offers and explore each one in detail.

The final draw came down to two London universities, both elaborate in their attention to detail. The virtual tours of university life were impressive. As studying in London had been off the cards previously, both were unknown quantities. Now, suddenly, it held appeal in vast quantities. A certain nightclub featuring in Freshers’ fortnight had a magical effect in transforming one university’s status instantly. A turning point had been reached.

From disaster and tragedy, suddenly new opportunities were forming.

By 4pm on Thursday, my daughter had accepted an offer to study History at Greenwich University, London. As a passionate Tudor scholar, imagine the delight to discover the great and significant connections with Henry VIII and Elizabeth I at the Royal Naval College, Greenwich. As a passionate party-goer, imagine the delight at discovering the proximity of London’s night scene and a two-week fresher experience that includes XOYO! Well, my daughter had found her Mecca. 

Greenwich College

Royal births at Greenwich include

  • 1491 Henry VIII
  • 1499 Edward
  • 1516 Mary
  • 1533 Elizabeth
  • 1536 Ann Boleyn miscarried

Royal weddings at Greenwich include

  • 1509 Henry VIII to Katherine of Aragon
  • 1540 Henry VIII to Anne of Cleves

Lessons to be learned

In supporting our sons and daughters through the turbulent sea of life, we must be mindful to keep dreams alive and a sense of self-worth intact. There is a harshness in the competitive world of education and work that can erode the human spirit and wreak havoc on dreams and aspirations. In difficult circumstances we must ensure that we do not lose sight of the longer term goal, or allow those we love to be set off-course, on some downward trajectory, by obstacles to our success.

In the words of Dr Seuss, there are mountains awaiting, so get on your way…

Dr Seuss

Postscript: One year on and my daughter has had a brilliant first year at Greenwich University, utterly immersed in student life and city life. It is different from what was expected, but better in many ways. There is much that one could regret, regarding other university opportunities, but much to be grateful for. We adjust, we adapt, we move on and we make the best of the opportunities set before us. Your mountain is waiting – so get on your way!

On reading Keeping Katherine by Susan Zimmermann

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On Rett Syndrome, on reading Keeping Katherine by Susan Zimmermann, and a moving post by Charlottetwenty09.

charlottetwenty09

It will be almost 2 years in a few weeks, since I received the call from my paediatrician , of a positive result for Rett Syndrome for our Charlotte.
It was a diagnosis I had hoped she didn’t have as it talked about seizures, low life expectancy, severe mental retardation, non purposeful use of hands and lifelong dependency. It was one I had found after many nights trolling through the internet. Another paediatrician mentioned the possibility of autism before Charlotte was 2years old, but one of our early amazing physiotherapists commented she didn’t think her hand repetitions were stims, which normally fits with autism. So there I was googling repetitive hand movements and loss of hand skills and it led me to question whether it was Rett Syndrome.
I didn’t think I would still be feeling so devastated about it all, 2years later. Isn’t 2 years long enough? to grieve…

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