There’s a whole lot more to ‘independence’ than catching a bus….

There’s a whole lot more to ‘independence’ than catching a bus….

…. than making a sandwich or doing your washing.  Just like with the new approach to SEN Support in schools, that asks us to think about ‘barriers to learning’, the ‘itmustbemum’ mums are clear:

“It is essential that the likely barriers to becoming independent are properly identified, assessed, then understood – so that support is appropriately targeted at overcoming them.  We need to be careful not to make assumptions about what the barriers to becoming truly independent actually are.”

Our bright children with Aspergers and co-morbid mental health problems have very real barriers to them becoming independent adults.  These have very little to do with the development of practical skills.  All these children require specialist residential provision, largely due to repeated failure of mainstream schools to acknowledge their needs and then meet them.  This has led to serious mental health difficulties that simply cannot be fixed with a few weeks of CBT.

On top of this they have a crippling social communication disability.  All have a high IQ and a precocious vocabulary.   Despite this, their ability to use language to communicate, and to understand the many nuances of non-verbal communication, is disablingly low.

Support to develop and manage these aspects of their make-up is now essential if they are to become adults that can function successfully and achieve their potential in society.

Peter can cook a sophisticated three course meal, DJ can fix any computer, write music and produce amazing creative writing, Jo is a talented actor, horse rider and is gifted with animals large and small.  None can access school outside of a residential setting.  None of them will be able to live independently without differentiated, thoughtful intervention based on what we currently believe to be their actual barriers to becoming independent.

In short, the barriers to them becoming truly independent are more about mental health and social communication and less about their ability to shop for a few groceries.  

Teaching them to catch a bus, cook a meal and do their washing may satisfy Ofsted (the reason for the nonsense targets sometimes given), and may fit with a model that care staff are used to in different learning disability settings, but for this group of children it is simply an unhelpful tick-box exercise.

Moreover, a drive to encourage practical independence, functional skills and an attitude that is more ‘grown up’, too soon, can in fact, also obstruct the ‘healing’ that needs to take place first.  Jo has something to say about this issue:

Hi.  A blog from Jo.  My whole life I have been fighting anxiety and that means I have never had the chance to have a childhood.  I was never able to have the “carefree” stage because I was constantly thinking “What could go wrong?”.  This meant that I never had true freedom from the world’s realities.  

Look people, I do not need to know how to do the laundry, I do not need to know how to cook a meal and I do not need to be able to do my own weekly shop.  I’m a child for goodness sake!  What I need right now in my life is people to help me to enjoy life and give me freedom from reality every once in a while and give me the childhood I never had.  I know that some people may say that I’m not a child but legally I am.  I am still dependant on my parents and carers and that means I am a child in my mind.  I missed out on a lot of things in my younger years:

  • Having friends
  • Not having a care in the world (I really wish I had been able too)
  • Not thinking about the consequences
  • Wanting to go on trips
  • Enjoying school (there was never a day of school that I didn’t dread)
  • Wanting a reward (it put too much pressure on me)

I think that now even though I am older I should be allowed to do childish things (and take back the time I lost).  All I want and need to achieve at the moment is to be able to live in the moment, not have a goal to be working towards, not need to think about the future or the past and (most importantly) just be able to enjoy right now.  I have recently developed an obsession over unicorns but this gets me unwelcome attention.  I believe in modern day society we should not have restrictions on whether a teenager has to like certain things.  I believe that anyone of any age should be allowed to love unicorns.

As Jo so clearly explains, our children can be delayed emotionally.  Whilst their vocabulary is ‘older than their years’, their emotional development is ‘younger than their years’.  They have spent years trying to cope with chronic anxiety and working like Trojans to find and develop coping strategies just to manage in the stressful and overwhelming environments that every day life has brought.

They haven’t had the brain space for a childhood and now they need experiences that match their current emotional stage of development.  They need to be allowed to enjoy being young before they start working towards being adults.  They have been under intolerable pressure for years and now they need some rest.  Some time just to be…..

They need to be allowed follow their own agenda in terms of practical skills and activities are concerned and above all else we need to make sure that we are supporting their communication and mental health.

Our children have missed out on a huge amount of play.  Play is the most powerful learning tool that children have available to them.  It offers a safe medium for learning where they can make mistakes without consequences, they can learn at their own pace, follow their own interests, act out scenarios they need to make sense of, step out of their comfort zone without committing themselves and behaving in a way that matches their emotional development, not necessarily their chronological age.  Children will try out new skills in play that they may not feel confident to use elsewhere and, because they are choosing to do it and enjoying the process, their learning is likely to be far more effective.  This way they will consolidate that learning naturally too.

So, what skills do able children with ASD need to develop in preparation for adulthood?

Rosie is more than capable of cooking a meal for herself at university.  She can write a shopping list and go to the supermarket too but…..

…..sometimes she can’t manage to provide a meal for herself for a day or two.  It isn’t a lack of practical life skills that prevents her; it can be chronic stress, fear of the  social communication involved in shopping and anxiety induced inability to make decisions and cope with demands.   These are the obstacles she has to overcome in order to look after herself.  Give her any washing machine with labelled buttons and she will be able to work out how to use it.  If, to access it, she has to leave her flat and go to a room where there will be other students who she might have to talk to – and it could be weeks between washes.

Again: it isn’t the lack of practical skills that is the problem…..

We feel that our children need first to satisfy their need to be children and to catch up on lost time.  That until this very real ‘need’ has been satisfied there will never be ‘space’ for the full development of real independence that includes emotional intelligence and maturity as well as the practical skills.  Critically, unless their mental health is safeguarded, its recovery supported and skills developed to ensure that this can be maintained, then they will never truly be ‘independent’.

Learning the more basic practical skills to manage life is not going to be a problem for our children.  But being paralysed by anxiety, having their lives ruled by obsessions and being rendered incompetent because of social communication difficulties, might be.  

To achieve the true independence that we know they are capable of, our children need:

  • skilled assessments of their barriers to becoming independent by ASD specialist Mental Health Practitioners, Speech & Language Therapists and Occupational Therapists;
  • a clear, graduated approach to implementing targeted support for the barriers identified and assessed, with ongoing re-assessment and intervention by therapy staff;
  • day to day skilled support from experienced and trained care staff with access to regular supervision and advice from the Therapy Team.

Whilst they are cared for using models of independence developed for young people with very different disabilities; without these being thoughtfully differentiated, we worry that the meaningful progress that is essential to their success as adults could be obstructed.  

By Rosie and Jo’s mum, Peter and Lily’s mum with a contribution from Jo.

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One thought on “There’s a whole lot more to ‘independence’ than catching a bus….

  1. I couldn’t agree more that we need to be supporting the social communication and mental health of our kids. The NICE guidelines (CG170) agree and so does The Lancet http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(16)31229-6/fulltext

    And that is why a small group of parents from Bright Futures School for children with autism in Oldham are doing this: https://www.crowdjustice.com/case/social-communication-interventions-for-autism/

    The next in the series of SEN tribunals is next Thursday (25.5.17).

    I will be blogging about how we get on here: http://notnigellanotjamie.blogspot.com and you can take a look at the difference a social communication programme makes to connection, reciprocal communication, enjoyment and feelings of competence (and therefore self-esteem) here: http://bit.ly/2aqoSey

    Like

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