The Long View

Colin’s parents honeymooning in Jersey 1955 with Sister and brother in law 

We so often take a very short sighted view when planning for the education of very challenging or disabled children. What is happening today, this week, this term or at best this year is the dominant preoccupation in the UK education system and elsewhere. 

‘Darren has head butted the Teaching Assistant…this has gone on too long already, he has to go….’

The incident with Darren can preoccupy a meeting set to plan for meeting his individual educational needs. Yet a decision to change school placement will affect his whole life as well as that of the community in which he is a member.

‘What do you want to be when you grow up’? 

How often have you heard this question asked of typical children? What was your own answer as a child to this question? 

However we so often will not ask this same question of disabled children and families will often say ‘we dare not think beyond today’ let alone into the long term future. So we go about planning for children with complex impairments as if they did not really have a long-term future and adulthood. We make major decisions such as placement in a special school or unit without having regard for the long term implications of such a move. The child when they do become an adult are greatly at risk of vulnerability and isolation from the wider community into which they find themselves a part, or not a part. We live in a society that does not have special shops or special bus stops….

Yet when we really take the long view backwards as well as forwards we can be truly amazed and can learn much to inform our planning. Lets start by looking back…

 Colin with Nanny Warren and baby sister Jane 1959

This is my mum’s mum, my maternal grandmother, my Nanny Warren. This wonderful lady was passionate about life, loved singing, playing the piano and photography. At 16 she played piano at the Crystal palace with a full orchestra. She played piano for the local Coop Juniors for many years. For most of the years I knew her she was largely house bound. When visiting Nanny Warren you would be regaled with stories of the war, of past musical concerts and people she had known. Deep into my adolescence and then on into my early 20s I would visit and absorb all of this. I would then be required to sing ‘ Amazing Grace’ at the old piano before departing. What drew me perhaps even more powerfully than all of this was Nanny Warren’s gift of being able to communicate something extraordinary over the space between us. Unconditional love.

This was communicated largely non-verbally through the twinkle of an eye, a special smile a connection we both knew was present. Words to spell this out were few. Possibly ‘ You lovely boy’, might punctuate what was largely achieved silently. No special programme was needed between us to boost my self esteem, just unconditional love and acceptance readily received by me. 

In fact the essential ingredients for inclusion were present in our relationship. Nanny gave me all I needed to be truly present. Complete acceptance, love and someone who would always listen to me. I belonged.

Nanny Warren has been dead some 30 years, but of course she is alive in my heart, my mind and my soul. Part of her lives through me as it always does when we are well included by someone, their gift flows through us, stays with us and others benefit later. What a message of hope. We can do this today for someone. You are already doing this without realising it.

You may not have a Nanny Warren in your life, but you will have known someone, however painful, shadowy or dark your life has been so far, who stepped forward from the shadows and was there for you. Someone believed in you, reached out to you, helped you at a crucial point in your life or simply opened a door. Remember them. What was it about the relationship that made them so special? What did they bring? They may have been a teacher, parent, brother, friend, community person, or even a partner in more recent years. Recall them. What did they give you?

Reflect on people in your own life then ask others. This is a key question, who do you remember who was there for you? What was it about the relationship that worked so well? These are the ingredients for inclusion. Here lays all the information we need to create more inclusive families, schools and communities. We have listened to hundreds of these amazingly magical stories over the years and are constantly moved by the simplicity and wonder of inclusive relationship. 

‘Just being there… accepting me for who I was whatever I did… encouraging… unconditional support… wanted more for me…saw something special in me… treated me as if I was part of their family…opened the door to their culture…made a special effort for me…’ The words go on…

These stories of love and connection are directly linked to the long view as people are there in our pasts there we are for others in the present. 

Some people like to haunt themselves with the question: What is the worst disability? 

We have no doubt that it is loneliness. That is the enemy. As you read this you will know of children that are pushing the system, that are very likely to be excluded or segregated. What you do in that child’s life can make all the difference to whether they exist within a network of fulfilling relationships or whether they become isolated adults. Anything you can do to ‘hold’ that young person within their mainstream community will help maximise their opportunities for longer term fulfilling relationships.

So this is where we return to the child who is hard to include and decisions we take about them now. Imagine you are a child at school with a boy called Aaron. We can decide that Aaron is too difficult. He is aggressive, he keeps strangling Linda, he keeps having tantrums, thrashing around on the floor. He barely uses any expressive language and does not seem to be learning much. What to do? Is he just too hard to include?

We can go two ways….

We can decide that he is too hard to include. Let us send him off to a unit or special school.

We can decide that we will hang on to Aaron. We will work on understanding his behaviour and his relationship with Linda and others. Some days it will not be easy. We will include him.

When we roll the clock forward into the long view we see the full implications for our early decisions.

There we are on a bus 20 years on… we see a large man throw himself onto the floor and begin thrashing around. Who is he? He seems weird and dangerous. Surely the worst excesses of a care in the community policy done on the cheap…This man should not be out on his own. No one knows him.

Or the same scenario, but this time you know him, its Aaron surely. You stand and lean over him ‘Aaron have you still got that cat?’ The man leaps to his feet with a smile on his face. You know him. No, he still does not have much language, but he still loves cats  and recognises your voice.

The prizes of inclusion over the long term are great and varied. Maybe many more people will recognise Aaron’s face and quite a few will know his name. A number may have learned of his interests and his gifts. A few may have active relationships going on with him still. He may have friends, he may even have a partner.

Michael Rutter’s (1982) famous Fifteen Thousand Hours: Secondary Schools and Their Effects on Children reported that a group of girls brought up in care interviewed as part of the long term aspect of his research reported that they could all remember someone who had made a huge difference to them in their lives. The person was often a teacher. What was particularly interesting was that when the researchers tracked back there was no indication of any change in the girl’s behaviour at the time. It was only years later that the full impact of these relationships emerged. This is encouragement to take the long view however challenging pupils may be that we are working with. 

Just holding in there, keeping the faith, believing in the possibility of change and in the value of the person, simply bearing witness or connecting in one of the amazing ways we explored earlier may be massively beneficial to the child involved.

How do we operationalise the long view? If you wish to go further to ground the idea of the long view further what can you do?

Well its is possible to build long view questions into planning from the Early Years on. A key question was well caught by John O’Brien in his work on transforming attempts to assess to attempts to create portraiture. 

What will it take for this person to have employment and real relationships as an adult? Who do we need to involve now in the person’s life to fulfil this?

We may be asking these questions around a child who is aged 3 years… the long view will influence the answers.

We may also be exploring Herb Lovett’s wonderful question that he saved up for really complex case conferences full of all kinds of professionals gathered around an individuals challenging behaviour:

‘Who loves this person’?

Whatever the reply, Herb advice was that this was where you should begin… In the context of the long view the implications are even more obvious. We may need to radically reach out to the unsung heroes of family and community life quietly holding the capacity to provide love and friendship in abundance if invited. We will return to the practical implication s of this when we explore the keys of teams and the intentional building of relationships.

We will know when we have really worked on getting the long view right when in our work we can confidently ask disabled and challenging children:

‘What do you want to be when you grow up?’