Monday, 28 March 2011


In today’s fast moving and aspirational society, social care needs to keep up. Its evolving slowly - there’s a cultural shift towards personalization and our expectations are higher than ever. I believe personalisation can be achieved in small group home settings for those who are more vulnerable or would be too isolated in independent living. With motivated staff - flexibility and creative thinking of effective and sustainable ways to meet peoples needs and have fun, so as not to stifle life choices just because of a system. NT's take risks everyday!
Right to Control a 2 year pilot scheme has been launched which builds on personalisation. I have had some training in this so will be interesting to see how it unfolds as the government want to work towards disability equality by 2025.
Basic human needs are the same for everyone, the way we satisfy them is different as each human lived experience is unique. There are various models of thought on this, I like Maslow’s triangle (without the hierarchy) C relies on others to provide and meet these human needs for his well being to keep his anxiety arousal low so C doesn’t drop too many spoons.

Maslow says there are 5 groups of needs to be met to achieve personal growth and maintain a satisfying life - in simple terms.. 

Air. Food. Water. Sleep. Bodily comforts. Activity – sensory and motor stimulation includes physical exercise, and rest. Sensory diet

To feel safe. Protected from harm (from self and others. Sensory etc). Laws. Stability. Structure. Routine. Sanctuary in own personal space. Financial security.

Love. Affection. Belonging. Acceptance and understanding. Family. Staff. House mates. Sense of community. Member of a group. Opportunity.

Dignity. Value. Respect. Freedom. Choice. Control. Empowerment. Competent. Confidence. Achievement. Learning. Meaningful activities - Active support.

Self Evaluating
The best life you can have.
Reaching your full potential.
Making the most of your unique abilities.
At peace with yourself.

The thought is we all have these same groups = I've just given interpretations of some of the needs I found on different Maslow triangles.
We are motivated by different needs at different times in our lives. I am also mindful of different climates, cultures and economic developments around the world.

C has to solely rely on other people for his most basic of  needs for achieving and maintaining harmony - the result of his social and physical environment can unbalance his needs being met and makes C self-injure.  

So when you have physically rebuilt some of C’s environment, changed everything you can, tried to rule out health needs, looked at communication profiles and if there is nothing else you can do maybe it is time to explore the option of medication so C has now been referred to see a psychiatrist.  
C is depending on us to meet his needs to keep him safe and give him the best life he can have. 

Monday, 7 March 2011

Walls are not hard enough

There are many forms of self injurious behaviour (SIB). C has tried lots over the years, biting, scratching, pinching, eye poking, hair pulling to name a few but non have worked so well for him as banging his head.

Not much research has been done into head banging – I know I have been looking for over 21 years! But we do hear of the accumulative affects it can have on boxers,  footballers and music head bangers.

20% of babies head bang the majority grow out of it. C didn’t as for him it serves a number of purposes. Expressing feelings. Communicating a need - gaining control because of the actions of others, something in his environment, to feel grounded, distraction from sensory pain, distraction from a health pain, emotional pain, lack of self-esteem, self-confidence, expressing fear, frustration, despair, anxiety, anxiety exposure, pressure, avoidance, wanting something, releasing adrenalin or endorphins (feels good!). Etc. C of course is a person first and not a collection of behaviours/labels.

I realised very early on that because of my mother’s instinct to protect my child from pain I would give into C’s SIB and other challenging stuff rather than trying to teach him other coping strategies/ways to communicate. At the time it was easier – for ME. But I realised long term this was not the right route to take for C. In those days local SLD schools did not have enough knowledge, so I fought hard to get C into a specialist school. I am very glad I did as over the years with consistency, understanding and hard work C has made huge strides and we don’t see many of his childhood behaviours now.

Because head banging for C covers so much it is not always easy to know what he is trying to tell you. And its not for lack of him trying. All behaviour is for a reason. It’s a coping strategy a way of communicating, but C does rely on others to work it out and then sort it out. And because we don’t always get it right as we literally don’t know what he’s trying to tell us ‘we’ end up shaping his behaviour. "Suit you, sir?" 

As C has become older, bigger stronger so his need to find hard surfaces to hit his head on has increased. Possibly as his skull has thickened where he hits it? Or possibly the sensory pain from his environment has increased for him? Or he is less tolerant as to the speed we can work out what he’s saying? I don’t know.

'Autism is anxiety looking for a target' Tony Attwood

Doors are not hard enough – they give 

As do tiles

As do walls

C now targets sinks and door frames as they are solid.

We are looking at how to make door frames safer - its not straight forward because of fire regs.

C won’t wear a helmet. He cuts his head open on the edges of door frames -  but won’t let anyone cut his nails. Shows how diverse sensory issues can be.

It is very frightening this need to escalate. And we must be careful not to allow our own fears to shrink C’s world – it’s something C and I have worked hard on over the years to open up.

So we need to continue working together on helping C learn other coping strategies, choices and ways to communicate his needs. C is fortunate he has a team to help him and I am a cog in 'Team C'. ( Carers are now getting better recognition as expert care partners and valued as we have historical holistic knowledge) We continue building C’s community and our understanding.