That Bleak Landscape Called Transition
In my previous blog, I wrote about TBLCT (see title) inspired by the session in The Scottish Parliament and mentioned that it is relevant to us as a family as Annie, our daughter and the inspiration behind the founding of Mindroom, is now part of that population. We have been negotiating TBLCT for the past two years, doing our best to squeeze out a meaningful existence for Annie from the meagre, unimaginative and undignifying offerings society asks us to make do with.
Last year worked out really well in the end for Annie (and therefore for us) thanks to a mixture of private initiative and a collaborative social service. Annie went to college, Headstart courses, developed her creative talent in ceramics and learnt to travel independently on the bus. This year our intention was to build on last years success as well as to encourage further independence.
I use the word ’was’, as on Friday we received a letter, out of the blue, from our Social Worker, who simply stated in one short sentence, that we no longer needed social work involvement.
‘I am writing to let you know that as there is currently no active role for social work involvement, I am now closing Annie’s case to Adult Social Care’.
Considering that we belong to The Complex Care Team and considering the fact that this decision was taken without any form of consultation with us or Annie, this letter was, to say the least, perplexing and very scary.
By definition, Complex means just that. Complex.
And Complex doesnt go away.
We need all the help we can get.
But, here is a Social Worker who has decided, God help her, based on what is presumably years of professional experience of Complex Needs, that Annie ’s mental handicap has gone away, that she now can read, write and tell the time. That Annie will be able to live independently, fill in a taxform, vote, find the right school for her children, drive a car, negotiate a mortgage, book a haircut, renew her passport, work out the right washing programme and plan ahead.
The letter with its stark statement, served as the proverbial rug being pulled from beneath our rickety foothold.
I decided not to write this blog in the heat of the moment and while my, already high bloodpressure, was dangerously close to terminal, but to wait, analyse and deliver in a dignifying manner.
My conclusion is compassionate; nobody in their right mind and with any form of understanding, could make such a decision, communicate it with such disregard for the family involved and expect silence.
Therefore our Social Workers decision must be the consequence of budget cuts imposed upon local authorities by the government.
The hypocracy and the patronising that follows in its wake is as excasperating as the actual daily worry of how best to assure Annie an interesting and meaningful life.
Festival of thoughts and emotions
During the month of August every year, since 1947, Edinburgh (where I live) is saturated with culture in all its forms and expressions. Music, comedy, theatre, dance, opera, literature and any new form of communication you can think of. And had not thought of.
The concept was set up in the wake of the Second World War to ’provide a platform for the flowering of the human spirit’. And it does. It is simply outstanding in its exciting offerings from all corners of the world.
Juxtaposed between a Gospel opera and a mesmerisingly hilarious Aussie comedienne, Felicity Ward, who once asked someone if they spoke HongKongese, I went along to see a play, EXPECTATIONS, about the complexities of giving birth to and then caring for a disabled child. Actually, the play centres around two couples, with the other couple deciding to terminate the pregnancy when they find out that the baby is severly disabled. Not exactly a subject matter that lends itself to a lighthearted hour at the theatre. However, Kristina Branden Whitaker of The Gothenburg English Speaking Theatre, has written, and performs in, a very, very powerful play about the randomness of life and the unimaginable challenges that comes with the territory of parenting a child with Special Needs. Emotionally exhausted, but grateful to Kristina for writing such a morally challening yet uplifting (and quietly funny) play about a subject matter that needs to be highlighted, I am so pleased the play won ’The Fringe Review Award for Outstanding Theatre’ 2010.
Even the Scottish Parliament is festivaling, with its own ‘Festival of Politics’. It’s their way of engaging with the public. They too deserve an award, as their varied and interesting programme really reflected the title of this years festival, ’Changing Politics’. Unfortunatley I missed Annie Lennox speaking, great I heard, about her AIDS campaign.
However, I did hear the formidable Jackie Baillie, MSP co-chair a session called The Trouble With Transition – about growing older with a Learning Disability. A very relevant subject matter to my family, as we find ourselves right in the middle of that Bleak Landscape Called Transition.
The majority of the speakers, ranging from school age to middle age and representing the various and perilous periods of transition, had some form of impairment. They all spoke with courage, honesty, humour and enthusiasm about their experiences (good and bad) and so sent us, the audience, off inspired to keep the pressure up.
The two school girls who spoke, summed it up though;
It’s all about having a choice. The right to choose school, education, life style, profession, habitat, support etc.
If that was the status quo, then we would have equality.
A toss up between cousins
Learning difficulties is amongst us all. In one way or another.
In my immediate family the prevalence rate is high. For completely different reasons. My son James (22) is dyslexic with an overlay of ADHD.
My daughter Annie’s (19) mild mental handicap is due to a chromosome deletion on Chromosome 1. Their cousin Måns (19) (see previous blog) has Asperger syndrome. What’s important is early identification and then collaboration between all interested parties. Which includes the person him/herself. All three cousins are at ease with their various difficulties and have learnt to negotiate life armed with as complete an insight of the road blocks as possible.
James, who studies Business Management at Leeds University, has just finished a Reflective Essay as part of his course work. To my delight his essay opens with bang;
“This piece of work is going to start with two confessions. First, “Reflective” and “Essay” are two of my least favourite words. Ten years ago I was diagnosed with mild dyslexia with an overlay of ADHD. These learning difficulties mean that reflecting is totally contrary to my hyperactive tendencies. Reading, writing and spelling are challenging.”
Måns, who drove his own car to the summer camp, Camp Kasper, last week, made a triumphant entry by arriving last, roaring into the court yard, honking the horn, doing a lap of honour and finishing off by parking in between the front steps and the dining room window.
Both boys contribute by assuming as much responsibility as possible for their various learning differences. Society, with all its facets, now has to match their input.
Conversations with Måns
My nephew Måns has Asperger syndrome. He is one of the lucky ones, in that his particular differences and difficulties were identified very early on. He was four years old when the investigation started and five when he got the diagnosis. Since then my sister H, her husband P, Måns’ brother C and Måns himself have enjoyed an exemplary collaboration between local authorities and family. Societal dimensions involved are Health, Education, Social Services, family and friends.
Måns, who is 19 years old, and his family are Swedish (as am I) and live just outside Stockholm. The understanding and accommodation of any form of learning difficulty and the quality of social services in Sweden are, just like in most other countries, patchy, but in this case here is a success story so far.
At no point and at no time, has neither Måns nor his family felt discriminated against. Of course there has been the occasional friction between unsuspecting and unitiated members of the public, as Måns has a very direct and purposeful modus operandi and language. His ‘move over stupid, horrid baby’ at a childrens’ birthday party, didnt go down too well with the mother of that particular baby. Despite such an unfriendly dismissal, Måns has an acute sense of right and wrong and reacts with emphasis to any form of crime or injustice.
Måns’s schooling was very successful in that he attended a small (5 pupils and 2 teachers) tailor made class in Primary school. In Secondary school he attended a class for pupils with Asperger syndrome, where the pupils’ various idiosynchracies were taken into consideration, but where they also worked a lot on social skills.
Transition from school to higher education was somewhat less smooth. Not all colleges would welcome Måns, but a Vocational Technical College, YTC in Järfälla, welcomed Måns with open arms. They had never (knowingly) had a pupil with Asperger syndrome, but realised the uniqueness of Måns and offered him a place on the Electricy and Elevator (!) course.
In order for Måns to cope with the world such as it is, he needs to go on swings. The rocking movement gives him back his sense of self. As he says , ‘I need to go on swings in order to meet myself’.’ His college tutors realised how important this was to their pupil and quickly added a ’Swing building’ module, complete with planning, building and budgeting, to Måns’ timetable. Six months later, Måns and his team erected the perfect swing, with a tailor made tyre to suit, in his garden. Marks 10 out of 10 for Måns upon graduation and 10 out of 10 for the college.
Sitting in the sun, it’s tropical heat here in Southern Sweden (Wallander country), Måns and I are discussing the fact that it takes all kinds of minds in order for the world to go round. Or as he puts it: ’The right man in the right place at the right time, gets the job done’.
Exactly, we need to focus on each persons strengths and not get hung up on the weaknesses. 55% of the population who are learning disabled in the UK, are unemployed. Where is the dignity in a life without being good at something?!
As for Måns and his future, he is on his way to becoming an outstanding electrician, with the added bonus of conquering an HGV drivers licence (he is also an expert on JVB diggers).
All kinds of minds
Did you know that today, in 2010, we know only 20% of the brain?
And did you know that of that 20%, we only understand 10%?
Every year, to keep up to date, I ask three of the worlds leading experts within neuroscience how much we know about the brain and therefore the mind.
Their answers have been uniform and unchanged the past 3 years.
In fact, one of them thinks we have gone back to only understanding 10%, after an American research team discovered The Default Network a couple of years ago. The Default Network is ‘a network of brain regions that are active when the individual is not focused on the outside world and the brain is at wakeful rest’.
Basically the TDN is your soul. Apparently the American team has discovered a way of identifying the soul and its interactions with the brain, on a machine.
And that has sent our current understandings hurtling down the snakes and ladder.
On the positive, and to climb back up the mountain of understanding, scientists have now discovered that the human brain can improve with age. Of course it can and does. An older persons judgment is based on knowledge, experience and that important lack of need to prove oneself.
While the short term memory, where are my car keys and how come I forgot my dental appointment, may decline with age, it is the long term memory that remains unaffected, as does often the persons vocabulary, emotional intelligence and social skills.
Although we are still at the foot of that ascent to greater understanding, there is a generational improvement of intelligence, which means that someone in their twenties now may be brighter than someone of the same age several decades ago.
One key factor to that improvement is the importance of exercise, both physical and mental. Despite that, I can safely say that no amount of endorphin release will entice me to do another marathon again. My 4.36 at London Marathon in 1983 still haunts me.
Using the 20/10 % ratio as a no brainer guide line, it is logical to conclude that none of us know more than the other really and that therefore no one has the right to exclude anyone from a decent chance to a dignified life. In other words, we need to move the current restrictive norms, set with even less of an understanding of the brain, to include all kinds of minds.
The American poet Emily Dickinson, who lived and died more than 120 years ago, knew it all, already then. Her poem, simply titled, The Brain, puts everything into perspective and serves (for me) as an absolute reminder of equality.
That’s it for this week from this, way-past-middle-aged, Founder of Mindroom and mother of two.
The Brain
The Brain – is wider than
The Sky
For – put them side by side
-
The one the other will
contain
With ease – and You –
beside
Emily Dickinson 1830 – 1886
The importance of essence
On the wall in my study, within my line of vision and as a thought provoking reminder of who I am, sits a badge from a Parliamentary Reception at the Scottish Parliament that simply says ‘Sophie Dow – Rare chromosome disorders and Mindroom’.
Who could have predicted such a deviation in life?
20 years ago, I was expecting my second child and knew nothing, really nothing, about the complexities of the brain and indeed the mind, nor about the reality of the damning statistics that permeates the field of Learning Difficulties (an insufficient/misleading term that needs to be discussed).
Today I am acutely aware that my daughter Annie falls outwith the anachronistic norms that restrict our society-ies, (it is a global problem).
With figures such as 55% unemployment amongst the population who are ‘learning disabled’, 72% resp 70% of male and female prisoners suffer from two or more mental health disorders * Prison Reform Trust, and a ‘one-size-fits-all’ state school system (otherwise called ‘inclusion’) the odds for my daughters future are not encouraging.
It was therefore very encouraging to read Scottish Education Secretary Mike Russell’s piece in The Herald on 25th June titled
We must unite for the sake of our children, in which he states that too many children still face a life time of ill-health, poor education, dead end jobs and lives of crime due to underinvestment at the very start of their lives.’ We must do better, he continues, not just for the sake of those children but for the sake of society. We can no longer afford to pay for the consequences of long term and deep seated problems.
In short, Mike Russell stresses the importance of early identification and support, not just for humanitarian reasons but also for budgetary reasons, ‘for every pound spent during a child’s early life, the public purse can save anything from three to seven pounds later on.
He calls for a national consensus to be built around this public health problem of our time, in which learning difficulties play a significant role. Best of all however is that Russell states that the concerted effort should be free of political, social and cross sector differences.
I would like to believe that such a statement comes from the heart, informed by undeniably sorry statistics, and will sign on to such a sensible consensus.
And what does ESSENCE stand for, you ask?Well, it is yet another acronym within the realm of the understanding of the brain, and it is a very important one, as it stands for Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations.
Which means that we now know it is vital to future outcome to act on early signs of differences/difficulties. In other words, the ESSENCE of the acronym is to encourage parents and health professionals to work together as early as from birth. To register worries and then to track and accommodate them as the child grows.
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