Colourscape

Colourscape a unique experience linking music, colour and space. You freely walk around soaking in the feelings each colour radiates as you immerse yourself in them. Wandering through the different chambers letting the colours wash over you.

I travelled 150 miles (picking up my young nephews on the way) to experience this to see if I could judge if C would be able to cope with it as it is coming to a town near us next month. C has been on medication just 5 weeks now. It is still very early with no change as yet so I am not sure that he could as the feelings the colours give are very intense. But we shall see - am thinking positive :)

Access to health

Drowning in a tidal wave. Rapidly repeatedly smashing his head hard onto a solid object trying to cause more pain to block out the pain he is already in - giving himself something to cling onto – to find his way back.

This is what it looks like to me. A tidal wave of pain from what though – I don’t know. C needs investigations to rule out health issues.

His desperate eyes boring into your heart silently screaming for you to help him. But you can’t always.

I wrote about this back in Feb. The words ‘critical ‘crisis’ ‘life threatening’ have all been used and yet C has only yesterday got to see the right Consultant who would prescribe meds and a referral to see a Neurologist. Meds might take yet another week – ‘as we are busy’.

This isn’t from lack of trying by me and C’s home and The Challenging Behaviour Foundation. We have been chasing – we have been repeating ourselves to different people and we get moved onto the next.

Fills me with immense frustration, despair and disbelief. Non of which is about autism but the system. The childrens world was very different.

You read and hear about valuing people people first, respect, dignity. So why has C been passed from pillar to post no one seemingly wanting to take responsibility. And in the meantime he is seriously self-injuring nearly every day. He is telling us loud and clear something is wrong

C’s next head bang could be his last. 

Has no one learnt any lessons from Mencaps Death by indifference and the inquires that have followed.

Facing Autism in New Brunswick picked up on this post. You can read the discussion here..

Every time we go out...

Abuse on a large scale is not just happening behind closed doors as in the recent exposure at Winterbourne but in the community - on the streets - in public – by the public. Disability Hate Crime.

I did not realise that people calling C names or expressing hateful opinions about C is verbal abuse – and is a Hate Crime. Over the years I have accepted the staring, muttering, making comments as part of C’s life. Not only did I accept it but I expect it every time I take C out. It is part of our lives that I have had to get used to so it doesn’t get to me. Thankfully C is oblivious to it (as far as I can tell)

This is the type of prejudice that inspired me to write my rap – if C could speak.

C’s invisible disability is very visible! And there have been times I’ve felt harassed and in danger.



I recently had some training in Disability Hate Crime which touched on genocide. And with Panorama still fresh in my mind I have decided no more! The kids/adults muttering abuse – calling C names (and we live in a respectable area) have been getting away with it as I have been ignoring it I now realise could be the predatory corrupt caregivers - the emotional and physical abusers of tomorrow.

Disability hate crime is a direct attack on a person's identity and an infringement of their human rights, perceived by the person or any other person.
It doesn’t matter that the person doesn’t understand it.

There have many headlines over the years of the failure of the police, prosecutors and some care organisations to take Disability Hate Crime seriously. Fiona Pilkington being a very high profile case – after it was too late. A mother who killed herself and her daughter because no one listened.

Unless we as a society recognise what disability hate crime is and start reporting it nothing will change.

I reported my first Hate Crime last week and was impressed with how the local police dealt with it. They couldn’t follow it up but it has been added to the statistics – I’m sure I will be adding many more.

By reporting this will help the police get a better idea of the level of hate crime in your local area and improve the way Police respond to it and could prevent escalation of seriousness. More funding and resources maybe allocated.

There are lots of ways you can report a Hate Crime.

More information;

Disability Hate Crime

Respond

Radar Stop Disability Hate Crime survey

Mencap. Stand by me.

Scope

The Muscular Dystrophy Campaign

Mind

The latest research report from ODI, ‘Public perceptions of disabled people’

Stop Hate UK

Mate Crime
Disability Hate Crime Network -Face book
Disability Hate Crime - Improving our Services survey



On C's behalf - I am not going to accept it anymore.

Whats your experience? 

Horrific abuse Exposed - Panorama

People make assumptions about why I ‘put’ C in a residential home – it’s so hard you poor thing you couldn’t cope or so I could have a life or because I just don’t care as those places are so dreadful. But all these couldn’t be further from the truth.
Maybe that’s a blog post for another day.

People also make assumptions about residential homes which have been reinforced by the recent Panorama undercover care programme that all homes are like this - it’s the tip of the ice burg.

As a parent respect, dignity and value are not only vitally important for C but for his staff as well. They are C’s backbone and a reflection of how C is doing.
My way of supporting and building relationships was to set up a parent forum who meets regularly, this helps with communication, transparency and trust. Working together.

C’s service provider has just sent out a response about the programme to all the family carers to reassure us about their commitment. And a senior manager has sent me a more personal account to share;

It’s the evening of Tuesday 31st May just after 9pm, I’m listening to the radio and working my way through a big pile of ironing. I get a text from a journalist friend “R U watching this care thing on Panorama, its horrible”. I suddenly remember a colleague last week telling me about an expos矇 on a care home and I’d forgotten, so dash to switch on and suddenly I am gripped to the TV, the longer I watch a tightness spreads over my stomach and I’m overcome with a helpless anger. Over and over in my head then out loud at the TV screen “why the bloody hell are you just standing there?” I shout at the care staff on the TV. I’m angry at the journalist, I’m angry at the staff, my mind races as the mobile texts start flooding in, one then another then another....

I work in social care for an organisation which has more than 10 care homes and a supported living agency serving people with challenging behaviour and learning difficulties. I work with many people who didn’t understand that night why they were watching the staff in a modern day care home abusing vulnerable human life in a way they wouldn’t treat a rabid dog.

I start to read the text which range from Care Home Managers, Deputy Managers and Care Staff and external colleagues, my friends too all astonished at the ghastly images they are viewing. I get text from these sweet people telling me of their tears and sadness, all of them asking ‘why?’

The programme ends and I get a text from a Male Manager whom I respect for his outstanding commitment to the human rights of the people he serves, his text reads “well that makes us all look shit”. My response is to comfort the staff and tell them they should be proud of what they deliver and that they are always transparent. I am so thankful I chose to work for this organisation and that our systems are so hot on safeguarding.

I get ready for bed feeling saddened that despite all the lessons that should have been learned, abuse of that magnitude is still taking place. It goes round and around in my head whilst I can’t sleep; all those people in that room witnessing; what is wrong with people? If I were being kicked in the street would they all walk past?

Next day I arrive at work, my office colleagues begin a day-long dialogue with every visitor and colleague that comes through the door. This continues all day with staff just reaching out for comfort; all the management reassure them; we feel for them as they are scrutinising their practice and scurrying through risk assessments to check they are not depriving people’s liberty, they are all edgy and where they walk with pride in the community on an average day, feel like the world is judging them today.

People I work with are recruited because they share the company ethos, we are one of the hardest companies to get a job with and have little turnover, this documentary has made our beautiful fulfilling roles into something tainted and dirty. Yes, it has served a purpose, but day 1 for that journalist should have been enough, that poor person suffered at the hands of people with a need to control because of his greed to further his career. So many people have something to answer to following that programme. I go onto BBC i-player, grab the link and email it to all the managers, just in case anyone missed it, most didn’t and those who did later responded the same.

As the day progresses I get a couple of emails from families, they are of support for all we do, so my eyes begin to fill and I share the news and others are delighted for this desperate confirmation that not all the world sees social care as a negative.

A few days on and many conversations later our industry is still in shock and still responding. We all pray that senior management of all large organisations have their finger on the pulse because the image of that beautiful and vulnerable life on the TV being tortured and abused will never leave my mind.



Each one of us could be in a residential home one day.
It is up to all of us.

Sensory Rooms

Our senses - a constant stream of information - hearing, sight, touch, smell, and taste being the ones we first think of but there are many others all working together – affecting each other – different intensities at different times – ‘a concert piece of stunts’ Barry Smith.

There’s also the sense of balance, temperature, proprioception, pain, acceleration and not forgetting internal senses of hunger, thirst, breathing, heartbeat, bladder/bowels, itches, sensitivities to different allergies, muscle tension, the sense of time. Etc. etc. And for C the array of senses that stimming and self-injury creates.

Many people are hypersensitive and/or hyposensitive. C lives in a very sensory world. And depending how he feels at any one time depends how he handles filtering the flood of sensory information. This can be overwhelming and cause C to fragment resulting in him hurting himself to try and block out the huge sensory distress.

As C has become older he has learnt different ways to self-regulate his environment when he can to cut out some of the bombardment. Fingers firmly in ears, poking his fingers in his eyes, humming and of course banging his head to block out some of the sensory pain and makes other people control the sensory input around him if they can.

So to have a room - a haven an oasis of calm where one can go to chill out, to relax, to process info in a controlled safe secure environment for people with huge sensory integration issues is sooo beneficial on many different levels.

The Sensory room that C goes to regularly because of cuts reform has closed which means not just one less activity for C but an activity that C got a lot out of.

There are different types of Multi-sensory rooms

White rooms

Dark rooms

Can calm or energise

A fab place to do some Intensive Interaction.

Research around these rooms has proved beneficial for pain control, ageing, mental health, strokes, brain injury, post-traumatic stress disorders, Alzheimer’s and autism with less aggression and self injury.

These rooms enhance development of senses such as hearing, sight, smell, touch, memory and attention. They encourage spatial awareness, concentration, relaxation, imagination and alertness improving communication and vocalisation. Motor and cognitive development.

They can improve mood which gives you respite from overwhelming sensations and continuous self-regulating so restoring your spoons, balancing health and harmony.

I think we could all use some of that!

So instead of being upset about C’s sensory room closing it gave me an idea that I am very excited about. C’s home has a disused double garage which would be perfect for a multi-sensory room. And would mean C and his house mates could benefit from it every day as and when needed.

So I have started to look for grants. And am researching alternative cheaper options for some of the fantastic equipment that you can get these days. All ideas welcome. Have you a favorite?

It’s a positive project to do in times of cuts reform as they are already impacting on C’s life. And a positive project working together with the other parents and staff to benefit everyone :)  


Words create worlds

Cultural perception of disability has long standing historical influences and has been shaped by fear of the unknown.

Ancient Greeks disposed of imperfect babies. The Romans would throw disfigured children under horse’s hooves in games in the Coliseum. Witches were identified by their impairments or by giving birth to disabled children and burnt at the stakes. Changeling children were drowned. Ridiculed as Court Jesters and the village idiot. Differences were caused by maternal imagination if frightened when pregnant, sexual immorality, astrological factors and divine punishment of parent sins.

Fear of the unknown - difference – do we still have that excuse today?

Homes for the elderly reminiscent of the images of the old asylum’s still haunt us. Derogatory, demeaning, dehumanizing. It is still ‘them and us’. Frightening as we don’t want it for ourselves so we ignore it. 70% of us will become disabled as we age.

We in theory have come far from exorcism, bleeding, leeches, cupping, electric shocks, lobotomy and worse. Or have we? There are many therapies and treatments out there and some parents want to cure their child. This is one of the reasons the disability movement have not always seen eye to eye with the carer's movement.

Disability is a product of how we have set our society up. Discrimination, bullying, abuse, hate crime and oppression are still with us. We still struggle with getting on to transport, getting jobs, getting into buildings, communication. Many families/people still feel they can’t go out. Cutting benefits and services adds to the perception of burden that our society has to bear adding to the barriers of prejudice and ignorance. Keeping people stuck in the cycle of institutionalisation and dependency. 

Many charities still exploit pity. Language is bias as we still use such words as; special, client, victim, user, marginalised, suffers from etc. We want to hear about independence, participation, inclusion, choice and more...

 Everyday words.

With social networking diversity is talked about so let’s use words that are inclusive for everyone. This is one small change we can all do which will make a huge difference.

It’s not about political correctness or being positive or even raising awareness it’s about respect and equality for all.

The rest will follow.

 Let’s be and do the cultural and social change we want for ourselves and our children and adults.

After all - C is hip hot and now!

        Equality by 2025   today        

This post was inspired by my recent visit to Re-framing Disability exhibition at the Royal College of Physicians. 

Deep pressure

I don’t know how many pairs of socks C has gone through - hopefully we may have solved this…..

=

First had to get into C’s world to work out why pulling up his socks every few yards had become a repetitive movement. Not good when in crowds or crossing roads. What need did it meet for him? Delay tactic? Anxiety? Sensory? Etc

Anxiety? Using Intensive Interaction I tried pulling my socks up at the same time as C. When C does this he makes a very loud humming noise as he has to take his fingers out of his ears. So when I did it I made his happy sound a loud eeeek while looking at him reassuringly. It worked practically straight away. An amusing sight the pair of us bobbing up and down humming and eekkking. But I don’t care – if it helps C cope with his environment. And as I am focused on C I am not seeing the stares and judgements people are making, which I know happens anyway. Might even make some people think a bit differenlty??

But this didn’t seem to be enough so had to think of something more. Over the months C has been doing this I’ve tried different colour socks, seamless socks, trainer socks, expensive socks etc. Nothing made a difference and all socks would quickly end up falling down as with C’s impressive nails the elasticity doesn’t last long. It was suggested to put ‘wrist sweatbands’ over the top of C’s socks.

Worked a treat :)

Intensive Interaction isn’t just about mirroring but about feelings and motivations of what a person gets out of something. Connecting. Not just speaking their language but understanding it and responding.

Sensory? Deep pressure (from sweatbands - i did try them on my ankles first to make sure they wouldnt be be too tight)  – has a calming comforting soothing affect. Helping to decrease sensory input. C also enjoys brief deep massages – and really hard quick hugs. And he will wrap himself up tight in a quilt. Large beanbags and hammocks C also finds very calming. I’ve wondered about weighted blankets (but do be careful as one young boy died) and hug vests. The blanket cuddle swings look good as do the body socks

But for now sweat bands are helping.
Sweatbands may also be helpful for people who eat their cuffs – wish I had thought of that when C was younger!

Or maybe they work as they simply keep his socks up!    

Balance

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.. 

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

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

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

Esteem.
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.