Mother of Shrek

Colourscape

2011-08-22T17:07:00.000+01:00

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

2011-07-14T06:39:00.003+01:00

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...

2011-06-16T17:05:00.006+01:00

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

2011-06-03T19:00:00.000+01:00

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 exposé 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

2011-05-23T08:30:00.000+01:00

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 c~~uts~~ 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

2011-04-26T06:38:00.000+01:00

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

2011-04-11T06:20:00.002+01:00

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

2011-03-28T10:04:00.000+01:00

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.

Walls are not hard enough

2011-03-07T08:14:00.001Z

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.

Worst case scenario

2011-02-17T15:05:00.002Z

C’s head banging has been out of control :(
Being pre-verbal does not mean having nothing to say! C has been trying to tell us something.

Even with ABC charts – functional analysis observations – sometimes we just can’t get to the bottom of such massive sensory distress. It is very frightening and frustrating for all as we can’t help him.

A best interests meeting was called to discuss emergency medical treatment and ensure there is a clear plan around what to do – a reactive management plan with a gradient of responses for worst case scenarios. I found it quite tough as it’s a subject people avoid talking about. But this is C’s reality. And the outcome of the meeting was very positive and reassuring.

Staff now know what a detached retina looks like, concussion, whiplash and induced fits, when to call an ambulance/when not to etc. They will keep C’s health action plan up to date and make him a hospital passport.

Proactive work needs to be continued looking at alternative ways for C to communicate. Intensive Interaction is the way forward I feel for C for this. To keep his environment safe but without isolating him. ‘Engagement in meaningful activity’. C loves the local sensory room but with cuts this is closing (maybe C's home should buy it?). He loves to be out and about so staff have to feel supported and confidant. The staff are the backbone – the reflection on how C is doing.

C needs much support which comes at a high price just to keep him safe and have a life like everyone else. At this time when the LA’s are making massive spending cuts it is very worrying indeed.

On the looking glass

2011-01-27T18:31:00.000Z

C is 22. And only in recent years he has ‘allowed’ me to give him a quick kiss. On his forehead (if he’s in the mood to bend down) or on his nose with my finger. His terms of course – but I don’t mind. And he has never given me a kiss.
Something is shifting in C’s development. I can’t quite put my finger on it yet. It’s always at C’s pace, you can’t push him or even encourage too much him (but maybe with II we will be able to?) as he will retreat and shut down. So you introduce him to something, leave it around – maybe the same day – the next day – a month – a year – never – sometimes he does something that blows me away. Today was one of those days.

I’ve always had mirrors about the house (since getting over the stage when C used to smash everything!) – something Donna Williams said once stuck with me years ago when I read Nobody Nowhere.
6 months or so ago I noticed C looking in the long mirror in his room – a first. And over a few weeks I noticed him watching himself or the person in the mirror. And then big stimming in the mirror. C is very hyposensitive – constant motion. I joined him in the mirror and he thought it was hilarious! I put a second full length mirror in his room and he suddenly seemed to notice more of what was around him as he started tapping the walls and windows with his hands (something he does with his feet (exploring where the wall/floor starts/ends) – but never with his hands) to do with the vestibular system and where you are in space. It was if he is beginning to make sense of where he his – maybe who he is?? Or that - ‘he is’- (developing a sense of self?)

Yesterday I put a hand mirror in his room. Today I noticed it had moved. I picked it up and saw lip prints.

Yes I know he was poss just smelling it, tasting it. But my first thought with a tear welling in my eye was – he gave himself a kiss.

Inner self

2011-01-19T17:48:00.012Z

I went on an Intensive interaction workshop
With Us in a bus

Intensive – yes

Interactive – yes

WOW – YES!

So basic, so fundamental, so obvious (when you know). Filled me with excitement. Very emotional. Hope it does the same for C.

And just as exciting, C’s service provider had listened to me and sent 4 staff on the same workshop. I could see the staff embrace it, they were also excited and motivated - empowered. We were all on the same page (hopefully improving communication between us too).

Staff left the workshop with a plan of action to start connecting with C straight away.

I want to let out an ear piercing, glass shattering, public scaring high pitched loud expression of pure unadulterated joy EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE beat my chest and slap my back peppered with a few 3 foot high jumps from standing – as C does.

But I will have to wait till C is home so I can share his inner world with him, share C’s language, as I mirror him. Acknowledging and validating, confirming his existence, showing C I am listening, I respect and celebrate him. This is in essence the building blocks of Intensive Interaction.

Giving C the confidence the self-esteem and motivation to explore communication further.

Giving staff confidence also.

Person centred planning at its ultimate. It’s as simple as that!

Chance

2011-01-06T15:26:00.009Z

"Chance Favours the Prepared Mind." Louis Pasteur

I recently went to a talk given by Dimensions who described transition from child to adult services similar to falling off a cliff. I would like to add when you reach the bottom there’s also an undercurrent as well which you can’t see and don’t expect.

I should have anticipated this in the light of the
I Exist NAS campaign. But I didn’t and I am struggling with what adult services have to offer from what I have seen so far for someone with C’s level of ability and challenges (no disrespect to staff as I know they are doing their best with the training they have)

C went to a specialist school. It was full on – he had access to many basic therapies, was a part of a thriving community and the curriculum was geared to him. Lots of access to different opportunities/experiences. He leaves school and we fall off the cliff. All the stress of various battles over the years - all that education and for what?

Or this is what it feels like to me. (And its not supposed to be about me. But after 16 months C is not as settled as i would like him to be)
I don’t get it. Why do the expectations change in the adult world? Why do old stereotypes ‘still’ exist? Why don't care homes seem to socially evolve? With all the new regs about dignity, equality, human rights acts etc etc why are many attitudes still so out of date?

Is this it for C?

The universe answered me in the form of an avalanche of emails from bloggers and Fb who had seen a promotional video clip (I had also seen it but am bowled over at the kindness and thought from people letting me know) in a Jessica Kingsley Publishers newsletter - Phoebe Caldwell about Intensive Interaction.

Something I had never heard of. But something I unknowingly do naturally with C. A good example is the post I wrote about C’s and my first clubbing experience. I have now read every book ever written on the subject and through googling I found a local organization that run workshops using Intensive Interaction! I went to one of their meetings for practitioners across the SE and sat there overwhelmed - stunned - fighting back the tears listening to their stories that here were a group of people passionate about making a difference to 'pre-verbal' people’s lives.

At the same time as this was unfolding I was in talks with C’s service provider about – 'is this it for C'. And the service manager asked me what they could do – out of my handbag I produced an Intensive Interaction book. She had heard of it so I pushed my luck a bit further and produced an application form for a workshop.

They are sending 4 staff on the course. As you can imagine I am over the moon. I am also going on the course – and am really looking forward to ‘working together’ with staff and with C.

All this came about through blogging. Through chance. Something I will not leave C’s future too.
So thank you everyone. I will keep you posted how it goes.

A new year and I hope a new beginning.

Merry Newtonmas Everyone

2010-12-20T09:16:00.001Z

The Autism Act 2009 was the first ever disability-specific law in England. This Act did two main things.
First to put a duty on the Government to produce a strategy for adults with autism, which was published on 2nd March 2010
That's C top right

The Government also had to produce statutory guidance for local councils and local health bodies on implementing the adult autism strategy which was published on December 17th 2010

Local councils and local health bodies now have a legal duty to implement it. (What there is of it)
Lack of money will not necessarily be a strong reason not to.
It covers training for staff, identification and diagnosis of adults, planning of services, including transition from child to adult services and local leadership.

So still rather woolly and open to interpretation. But this has made legal history and to my mind should open a few doors to raising much needed awareness. It is a start. Something we can positively build on e.g we need Autism Partnership Boards in all areas.

C in the mean time has been busy in Parliament!!
Well.......here’s a photo of a photo of C and I used by Viv Cooper of the Challenging Behaviour Foundation in a recent joint APPG on autism and learning disability in the House of Commons to which I was invited. Viv talked about their new Charter

So some possible hope for raising autism awareness for the future in one hand and on the other real fear as disabled people discuss suicide because of the proposed cuts to our Welnotfare system. Ministers need a Newton moment to remind them of past promises made and give them some understanding into the complex challenges that people have on a day to day basis for the simplest of things let alone trying to pay for basic needs such as heating, eating, getting around and picking up spoons etc

"Dire consequences" for disabled people. Neil Coyle, Director of Policy at Disability Alliance
"Devastating chain reaction" for people with autism. Mark Lever, Chief Executive NAS
"Many people will literally become prisoners in their own homes." Richard Hawkes CE Scope
And we have yet to hear the fate of carers.

Some sites to check out

The Broken of Britain.

to name but a few.

Am happy to add more.

From the The Big Bang Theory
Merry Newtonmas everyone!

Labelled

2010-11-30T08:27:00.001Z

Parent

I was recently told by a manager of a residential home (not C’s) that because I have organised a Christmas lunch for the parents of C’s home that there must be a need in me to fix people. Other parents have too many issues and I shouldn’t take them on (I was only suggesting lunch!) That there is something missing in me and that I should walk away leaving C to ‘highly trained’ staff and get on with my life. ‘That’ he said would be the best thing I can do for C. Stop being a martyr. Apparently I have a build up of years of grief, guilt and denial. I have co dependency issues, control issues and am over protective (maybe some parents have good reason) I should accept that this is ‘it’ for C and not to want any more for him. Staff are not there to befriend ‘clients’ or parents. It is a job. It is not about family. If your son was normal and went to university you wouldn’t know what he was getting up to. Stop trying to save the world. Stop interfering.

All because I mentioned having an Xmas lunch for parents. I'm finding the difference in attitude and expectation of some staff from the world of education to the adult world is huge. There should be a transition plan for us parents!

How can you accept and support our adults if you don’t accept and welcome their family?

Things are changing and with the Internet and social networking these days parents are all in touch with each other – and with professionals. Some of us are professionals. We have access to the latest research. Some of us go on courses and attend conferences. We read books and papers. We write books and papers! Parents can be a good resource. We are the experts. Many of us know the rules, regulations and good practice guides, we rewrite them! Some parents sit on Boards and committees and change policies. We are political. We take part in consultations. We campaign. We run Charities. We got a mention in the Equality Act! Things are supposed to be transparent. We do want more. And as Kev said – we want it for everyone.

From the Carers UK summit

We want to work together in partnership.

So yes I do have a need to fix!

What out of date stereotype would you like to change?

I know not all staff think like this and there are many excellent people out there who work really hard with us parents and do want to update the system and the attitudes.

Autistic with spoons

2010-11-18T09:26:00.000Z

Autistic with spoons? Autism and spoons? Here’s my attempt at a variation on the spoon theory.

We all have spoons. There are no stereotypes for spoons. Everyone’s spoons are different, everyone has a different numbers of spoons which fluxuate. Everyone uses their spoons in different ways. And maybe your spoons don’t even look like spoons!

I think I know my own spoons quite well, I have learnt to recognise (and respect) them as I have become older. Some spoons I can hide. C seems to know when I have lost a few spoons!

And C’s spoons from motherly intuition and my perception of them over many years I have some sort of idea. But I have no idea how many C has at any one time. He has ones for many more things than I do - noise, light, colour, smell, sharing personal space, things around him, movements, processing, feelings, thoughts, communicating, bodily functions, positions, health, head banging, keeping clothes on, standing up, rocking, flicking, eye poking - and many many others I just have no clue to. Nor no clue as to how they really affect him. Before during and after juggling.

Some days C is better at juggling his spoons than others.

Some days he may have woken up with fewer or more spoons than usual?

Some days some spoons maybe bigger than shovels and C is intensely aware of spoons that he can usually ignore.

Social interactions for C uses up lots of spoons so he very rarely does it and then only if he has spoons in abundance. Making him ‘appear’ severely socially isolated.

C’s spoons do not conform to many NT spoon rules. C’s spoons can be extreme - obvious or invisible. C’s spoons like to keep me on my toes :)

Some days C drops his spoons one by one – if I have been watching closely I can see this happening and sometimes I can distract him, divert him or remove him where possible before he loses too many.

We have both learnt different tactics for clutching on to the few remaining spoons. C learnt to put his fingers in his ears, to hum, to rock, to focus on an object (used to be a chopstick now it’s his thumb nail).

I have learnt where to position him, distract him with my predictable movements or by mirroring him, using behaviours he recognises, or maybe playful ‘ritualised exchanges’ like I kiss him on the nose with my finger. This seems to sometimes ground him (if he hasn’t lost too many spoons by then) or my making happy sounds that he makes. Looking deep in his eyes - Positive and reassuring. Etc

But if C didn’t drop them one by one, if all his spoons just spectacularly crashed and there is nothing he or I can do and he over loads, melts down, fragments – whatever you like to call it. All I can do to help him is to get him to a safe quiet place to recharge/process/pick up some of his spoons.

And I do the same as I also will have lost a few by then.

On reflection there is always something to learn, something I may have missed. And so the next time I try something slightly different (yet familiar and recognisable). We have built on this and evolved our routines opening up C’s world. I learnt to read the function of some of C’s spoons by being sensitive, mindful, watching and listening. It’s been hard work and some things have taken years - but C’s arsenal of spoons that he can juggle is growing and changing all the time - it has been so worth it and now we can go just about anywhere. And try anything.

We have a connection. He trusts me even when I get it wrong sometimes and drop the odd spoon.

Cuts and Campaigning

2010-11-06T16:01:00.003Z

Dear Bendy Girl

I recently went to a fascinating talk given by Neil Coyle Director of Policy of the Disability Alliance (DA). Their aim is to break the link between poverty and disability.

Some of the talk was around the background of where we are now and how the Dynamic Benefits led to the creation in Government of the 21st Century Welfare and their principles.

As you know the ‘potential improvements’ to our benefit system include a Universal Credit – a one size fits all model. A savings generator rather than to transform people’s lives and tackle poverty.

No mention of support, genuine job opportunities, supporting employers, sustainable or even enough work etc etc (Statistics can be found here).

We are all in this together! Disabled people did not start in an equal position. Disabled people are twice as likely to live in poverty already.

The DA need real people to speak up before the total effect of changes has such a devastating impact – case studies are essential.
So Bendy Girl I sent Neil Coyle your The Broken of Britain (A collection of real life stories) website which he said was very useful and he would be happy to add something to the site when they launch the research on DLA. (Dont worry i will remind him!)
So if we could urge people to send you their personal stories it could help make a difference.

Neil also urged that we all of course work with local councillors and MPs to highlight the impact of the proposals.

ACT NOW has put together an Impact Assessment report regarding the proposed cuts in public spending on people with Autism.

Disability Now warns of hard times ahead.

And the Ouch message boards are bursting!

Draft letter you can adapt and send to your MP

I recently went on a one day Campaigning course – here is a brief summary of my notes which may help anyone wanting to take any of these issues further.

Good campaigns run by local people can make make a difference.

You need to ensure your aims and objectives are clear and concise.
SMART - Specific, Measurable, Achievable, Realistic and Time-bound

Gather accurate information and evidence to support your case.
Examples include personal stories, questionnaires and surveys, good practice examples and relevant local or national statistics.

Timing is important, find out when to start influencing the decision makers.

Lobbying your local council. You can influence your council in a number of ways:
Contact your local Councillor. Use the Opposition. Use the Local Paper. Submit a Petition: Lobby the Leader, Executive and Cabinet, and use your local MP Locally and Nationally.

Use local media. When it works well, local media can be extremely useful in advertising your campaign to a wider audience. It can influence key decisions made by a range of people including, local councillors, MPs, business people and even help change public opinion.
It’s all in the first sentence – you need to sum up as much of your story in one sentence as possible and answer the questions: who, what, when, where, why and how. This is a great way to check if your story is news. If you can't sum it up concisely in a few lines of text, then perhaps it's not a news story.

Have a good sound bite. You can either put this in a quote in a press release. It can capture the imagination and get you more coverage and impact.

Letters to the editor. The letters to the editor pages are some of the best read pages in local papers. If you do send a letter, brief friends and colleagues so that when your letter is printed, they can respond and keep the story going. If the newspaper receives a number of letters on one issue, then it might prompt them to do a news item or a feature.
Phone-ins.These are the radio equivalent of letters to the editor.

Campaign stunts are effective way of getting media and public attention.

C and i will have to think of something! Any ideas?!
Hope all is going well Bendy Girl
Love Casdok xx

This is more like it.....

2010-10-21T16:37:00.000+01:00

Pure Joy

Clubbing the night away

'Diddlyland'

2010-10-10T17:03:00.002+01:00

C turned 22 recently. C in the same week was taken to Diddlyland by staff.

What image does this project to the public - to C?

That it’s ok to treat adults as kids?

Was there any thought or consideration for C's intrinsic value as an adult, as an individual?

Was there respect for C as a person first and not just as a set of behaviours. C’s Autism/learning disability does not alter his essential worth.

I fought for years for C to have the best education, support, therapies etc so he could achieve social inclusion in the adult world. Not this. Again. Contradicts everything I believe in, fought for, raised awareness for and worked towards with C.

C may very well have enjoyed this as he likes trains. But it doesn’t take much to be creative and find something more appropriate rather than maybe assuming C doesn’t know any better as he doesn’t speak and you can’t measure his IQ. The noises he makes may sound like babble but this does not mean you should babyfy him as he is communicating with himself and his environment and gives value to who C is.

We should be enriching and opening up Cs world, expanding his experience supporting him to grow and not stagnating him in perpetual childhood.

How can C grow in self confidence if low expectations are projected on to him?

To me this is staff demonstrating ‘Theory of mind.’ They are not understanding or relating to C. Imposing what they think from what they have always done.

A photo paints a thousand words. What does it say to you?
Some comments from various walks of my life:

As a parent of a young autistic child I find this frightening for my son’s future.

You must be livid. If anyone did that to my child I would hang draw and quarter them.

You should be grateful for what you get and not rock the boat. The staff are doing their best.

My daughter still likes to play with childish toys. I am weaning her off these to more sensory adult things. There are plenty about these days. But that is behind closed doors. I feel very strongly what we need to say to the public and staff.

In this day and age there is simply NO EXCUSE for reinforcing the public's stereotypical view of autistic people as lesser citizens in this way, and whichever so-called 'carers' were involved in this fiasco are fortunate they weren't exposing MY son to public ridicule like this.

As a refrigerator mum - you shouldnt care!!!

Where is the dignity and respect that our people with LD deserve? They are not adult children...this type of activity is taking us back to the dark days of Institutional care.... and that is part of the problem..... we don't want 'Care'... we want acceptance and meaningful lives for our people. They need respect and support to enable them not childish activities that only give a picture of pity to anyone observing them in this type of environment. They are PEOPLE FIRST and last.... the staff need more training... this is totally unacceptable..... C is an Adult..... his rights to be treated as such have been negligent. The staff should be ashamed of themselves!

I thought the CQC changed its regs to include dignity. Are the staff not trained?

Sorry I had to laugh. From Normalization to Personalization and Right to control to Diddlyland!!

Education staff and care staff have a very different mindset. Staff are the only barriers.

Illustrates well the Social Model of disability.

I am a young man with autism and I felt really disgusted when I saw the pictures of C on the Diddly Land train. He is obviously much too old to be on a ride like that as it is intended for young children. I felt very sorry for him as he was most probably being laughed at. He has the same human rights as anybody else and nobody else would be humiliated like this at the age of 22. I hope that me writing this will make sure this doesn't happen to someone else.

This is baby sitting.

Sleep Deprivation

2010-09-13T14:45:00.005+01:00

Sleep deprivation has been used in wars and terrorism as a form of torture to force victims to disclose information. Sleep is a stronger basic need than food and water. Simply, the human body cannot do without sleep.

Unless you are C.

C’s life is an endless wave of transformation and I never know what’s coming next.

C has never been a long sleeper. 4 hours if I am lucky. But for nearly 6 months now when home he has not been sleeping AT ALL.

Apparently there is a connection between lack of sleep and the following characteristics in some autistic people. But I think this list explains me and my sleep deprivation! I can’t see any difference in C.

• aggression
• depression
• hyperactivity
• increased behavioural problems
• irritability
• poor learning and cognitive performance

I feel my brain has been kidnapped. I feel desperately tired, lonely and often totally emotionally overwhelmed, a loss of identity as he uses me as an object.
Not knowing which level of consciousness or planet I am on especially around the 3am void on the 3rd night
Like the universe I need some Duct tape to hold me together.

So for understanding (and C enlightenment!) I research. But sometimes I have to accept I won’t always find answers.
Here are some of the things I have looked into over the years and more recently..
Medication side effects
Health issues
White Noise
Black out blinds
Lots of exercise
Diet i.e. cut out any stimulants later in the day (but the logic of healthy eating for me when tired goes out the window!!)
Colour therapy = colour of his bedroom
Lighting
Good routine – established over years
Aromatherapy bath
Massage
Weighted blanket
Looked at his bed as he was throwing his mattress down the stairs
ie Beds for autism
Or Water beds!
Bed socks!
Personalised Hypnotherapy CD

I looked at Cs environment from both his and my point of view, to make his room safe for my peace of mind. Soft play walls, easy clean floor. Bullet proof windows.

And recently I have pulled up the stair carpet and painted a stair runner as in the words of Mason the Chimp from Madagascar who says it so eloquently. It wasn’t just the mattress that was being flung down the stairs.

I tried supplements like Melatonin, herbal and homeopathic remedies. Badger balm to Camomile tea (cooled and squash added) etc.. but no affect.

I had to rethink.

So if none of this works and as all behaviour is for a reason....

It usually boils down to one of these
Attention
Escape from demand
Escape from attention
Tangible
Sensory

As not being able to speak does not mean C has nothing to say.
So what is he trying to tell me??

“If you want to change the other persons' behaviour, a good beginning might be to start seeing things from their perspective”

C is 21. 21 year olds go out clubbing all night. OK so they then sleep all day and Cs not doing that.

It’s his choice!? Who am I to say he HAS to sleep?!

We often wrongly assume others needs are the same as ours.

So I have to put aside my own needs and expectations of my ultimate desire of a night’s sleep as I realise after months – this is not Cs goal.

Or another theory

When C’s away he’s worked hard at making sense of chaotic sensory experiences and then can’t switch off when he comes home. He needs the down time to process and doesn’t sleep instead he is engrossed in repetitive behaviour (which I won’t go into) lowering his stress levels and exerting control. This has now become a cycle - an unstoppable loop.

So I need to look at ways to change the routine and break the loop.

I bring him home by different routes. I change what and when he eats, what he is watching etc These things don’t work

I use Cs repetitive behaviour to ‘talk’ to him. I copy him so I’m not overloading him with my stuff, I am validating C as a person in his own right. I am trying to get him to engage with me and not just himself. I stim, sharing sensory sensations, I squeak, orienteering myself to our common language, I talk Shyriiwook (the neighbours must think there is a Wookiee convention!)
Every movement, flick, tap, hit, rhythm, sound is an expression of feeling, letting me glimpse into C’s inner world. Deepening trust, reducing anxiety and gaining self confidence. Relating.

This is the behaviour I changed – mine.
I stopped doing this in the evening. I stopped engaging – talking to him, looking at him. And its working - slowly (hope I’m not speaking too soon!). He’s stopped exerting his control over me by literally physically holding me hostage. He’s still not sleeping mind you but happily babbles to himself which I can sort of doze through. Only the odd thing flies down the stairs. And I can try and catch up on my sleep when he is not there!

You would then think I would sleep for England but I don’t. My mental Tardis is on over drive and I can’t turn my radar ears off. So I am now using all the alternative stuff I tried on C to help myself so I can stock up on sleep before the next round.

Well that’s my theory! That’s my Duct tape – and I’m 'sticking' to it for now (with copious amounts of coffee!)

What have you tried?

Without Alice

2010-08-23T06:24:00.000+01:00

I remember very well the post DJ Kirkby wrote a couple of years ago when Denyse was diagnosed (at 40 years young) and

‘came out Asperger’.

Denyse said ‘ I am still the same DJ Kirkby except that now instead of feeling cross with myself for finding everything such a struggle, I am filled with a sense of pride at all that I have managed to achieve’.

Since then Denyse has had her first book From Zaftig to Aspie (a memoir) published. And Denyse is about to launch her second book – a novel Without Alice.

I am asked to review many books on my blog – all of which I turn down, even this one! Instead I took the opportunity to ask Denyse some (tongue in cheek) questions. Denyse would also be more than happy to answer any of yours. You can find real reviews here.

Why were you diagnosed so late?

I was diagnosed late because Asperger's syndrome wasn't classified as a disability until the late 1980's by which time I had developed chameleon like coping mechanisms. Getting my diagnosis was one of the most life enhancing things that has ever happened to me as at long last I understood why I felt alien from the majority of people I came into contact with, and why I struggle with things that seem to come effortlessly to them like behaving in socially appropriate ways seemingly without effort. It is nice to be able to act as a role model for my son who is also an Aspie and my husband has benefited from my diagnosis because he understands that we really are totally different and we get along very well because of, or in spite of, our differences

Fulfilling and rewarding lives is the Government’s first ever strategy for adults with autism in England (the consultation ends Oct 22nd) What are your thoughts on the actions for improving access to diagnosis and post-diagnostic support for adults?

I worry that once again the higher functioning autistic people are going to get forgotten about. There is a need for sheltered accommodation for those of us when we first move out of our parents homes and need to make a slower transition to fully independent living. Because we can come across as coping so well (we are chameleon people after all) it can be mistakenly thought that as we are holding down jobs, paying our bills able to cook clean and so on so then we can move out on our own safely. Wrong. One of the major things about autism is that there is a social developmental delay. So I was able to do all that I just mentioned and ended up moving thousands of miles away in Canada to work in a town called Banff. i was a hard worker, fairly good with money but so very socially vulnerable. At 18 I had the social etiquette and awareness of a much younger person and got led astray into a lot of things that a more socially mature person wouldn't have. Even now I am still very socially vulnerable but as I am in my 40's I think the gap has narrowed and therefore I am less at risk of being led astray. I have also learned that I am vulnerable and try to avoid putting myself into situations where I could get into trouble. I try to go out only with people who know me well so I can double check things with them. For example I can;t easily interpret people's reactions and can mistake surprise for anger and vice versa. With friends nearby I can judge by their reactions as to how I should behave in response to the situation. Though I am apt to say exactly what I think just like a small child and there isn't much they can do to stop me doing that....Life does get interesting with me around apparently. Sorry, I seem to have gone off at a tangent there...

The other thing I would say about the consultation document is that it needs to address the fact that high functioning people like me actually may not be functioning all that well under our chameleon colours. Sometimes we desperately need access to counselling and other coping strategies but because we hold down jobs, maintain relationships and so on - it can often be thought that we are coping well when in actuality we are struggling so much to keep it all together that we can't stop long enough to ask for help. Sort of like when you see a person drowning in water and they don't shout for help because they are too busy frantically trying to keep from going under.

I use writing to help me make sense out of the chaos of everyday functioning in a predominantly NT world but I still cry more mornings than not at the thought of having to go out and be at work all day, still fret over making socially unacceptable mistakes that will cost me my job. So even though I am very grateful to have a full time job with which to pay my bills, I dream of being able to write full time in the predictable comfort and safety of my home.

Without Alice is full of emotion and tangled lies which shows an understanding of others emotions and imagination. Your Aspie - you’re not supposed to be able to do this!!!

To be able to survive in a predominantly neurotypical world I have had to make a lifetime’s work of studying communication in all its forms. I find it fascinating how easy it is to misunderstand what another person means and the major events that can occur because of a simple misunderstanding or through lack of communication. I have learned how to function in socially acceptable ways, enough that I am able to work full time, but maintaining a neurotypical facade will always be the equivalent for me as a mainstream person watching a play in a language they learnt’ secondary to their first language. So, yes, the play can be understood but only after the words have been translated into the main language first. So the delay is always there and some of the subtleties of the social interaction are missed along the way, meaning it’s not as rich and fulfilling for those involved as it might be otherwise. But I am able to understand other’s emotions if I make the effort (though it is easier to write them into a novel that I can write in segments than to do it in real life), and I have always had a good imagination!

I understand you are also dyslexic - aren't dyslexic people supposed to 'hate' reading and writing?!!!

I’ve always loved writing, right from the moment that I realised that it was one way of expressing to others how different I knew I was. I began writing stories when I was very young and it has always been a good way for me to work through events that I find confusing or to try and explain why I reacted or behaved in a way that neurotypical people considered inappropriate. However, being dyslexic (you think they’d call it something easier to spell) means that I make a lot of typos and spelling errors, so to be sure my novel was in the best shape possible I paid to have it professionally edited before I submitted it to my publisher. I knew that I had to be confident about my novel if I was going to be able to sell myself as an author who has multiple disabilities, none of which would fit the stereotype of good idiosyncrasies for an author to have.

How do you juggle a full time job, being a loving wife, mother and writing?
I didn’t know autistic people could do these things!!!

Well I’m actually dyspraxic too so I’m not very good at juggling. I can just about throw one ball up in the air and manage to catch it, without hurting myself or someone nearby, in the process. Lots of mums nowadays have to work, raise a family and fit their hobbies in where they can. Just like with neurotypical people, autistic people are all individuals and there is a huge variance in what we can or cannot do. I work full time because I have to in order to ensure that I can pay my share of our bills. I remind myself (sometimes on an hourly basis) that doing so means that we can afford our house with its heavy duty insulation, nice open plan rooms and garden, where I can escape from the sensory overload that comes from living in a predominantly neurotypical world, instead of having to live in a council flat where I wouldn’t be able to. I’m very lucky to have a supportive (though sometimes baffled) husband who accepts that sometimes the lightest touch or noise can make me twitch. I also have a son who is autistic and I want to set an example for him that autistic people can manage to function in a neurotypical world to varying degrees with the right effort and the right support and that, most importantly, that being a success in the neurotypical world won’t deprive us of our autism.

You can find out more about Denyse at her blog, Twitter and Face book
'Without Alice' will be available to order from all good bookshops from October 4th 2010. However, you don’t have to wait till October, 'Without Alice' is now available to order direct from Punked Books

I’d like to leave you with this one hint; if someone ever tells you that they are autistic please don’t tell them that you are surprised by this revelation, it makes a mockery of all their efforts to maintain their neurotypical facade. Not that I have issues about this or anything. Ahem....*gets off soapbox*
'Without Alice' is the beginning of my own personal campaign to raise autism awareness and acceptance. Thank you so much for reading this everyone and I do hope you read and enjoy 'Without Alice'.

Health matters

2010-07-13T13:45:00.003+01:00

C is doing sooo well. He is really enjoying night clubs and has gone from holding 1 of my hands to a 2 handed ~~stim~~ dance from behind!

Since being in his new home together we have successfully sorted out 3 long term health issues his teeth being the latest one. (Health is difficult area because of C's challenging behaviour and difficulties communicating in a way that we can understand). The difference this has made to C is HUGE. He is showing progress in leaps and bounds which is helping to boost staff confidence with him.

It has taken 10 months for C to venture out into the garden.

He is now enjoying meals out there, hours on the swing and trampoline and even a night in a tent!

Vigorous head shaking hand flapping laugh :)

Collapsing with laughter!

From pressing buttons on a calculator C is now pressing keys on a roll up piano! And I’m just putting together a talking photo album. I’ll let you know how he gets on with that.

And look at this – I still can’t believe it – at the last night club he turned round!

Its these little things....

Operation tooth and nail

2010-06-20T15:23:00.005+01:00

A general anaesthetic is a worrying time for any parent, but even more so when you can’t explain to your child what’s happening and they have severe self injurious behaviour and nearly 6ft tall!

Just to look at C’s teeth and cut his nails.
The day went as i thought it would apart from a slight detour!

The best interest meeting had gone well. We had been referred to a private hospital because it is smaller and quieter. Through the Challenging Behaviour Foundation parents email network it had been suggested to use Rohypnol as a pre-anaesthetic as you can’t taste it, smell it, it knocks you out and you can’t remember. Perfect. But in the UK it is not licensed, if you have an understanding GP you can get it privately. C’s GP agreed, a week later changed his mind. He also wouldn’t give permission to do a blood screening (haven’t a clue why? Not wanting to take responsibility? )

The hospital wanted C to go in and have 3 MRSA swabs (underarm, groin and nose – I don’t think so!!) and they wouldn’t believe C’s manager that there was no way C would allow this intrusion, they were adamant as they had much experience of autism before!!!! This is when the label autism isn’t much use as people have general pre conceived ideas.

C went to the pre-op meeting with an entourage. Me, key worker, home manager and the service provider’s psychologist. So I felt well supported. We had agreed beforehand that we would not restrain C as this is just too traumatic for all.

Again they went on about the swabs, I tried to explain about the intensity of C’s SIB but it wasn’t until our psychologist said firmly he could fracture his skull that we got through to them. They were very good after that!! C also did some happy head banging which shocked them which also helped. They also didn’t agree to the rohypnol, but did agree to taking blood and cutting his nails.

The day of the op soon came. We gave C 10mg diazepam before leaving the home. C was going to be first on the list but because no MRSA swabs he was last so we had to wait. Wasn’t too bad as C was oblivious to what was about to happen. 25mg of midazolam was given to C in a drink – enough to knock anyone out. But not C!! He had other ideas, as soon as he had finished the drink he looked at me and then ran and lunged at the wall smashing his head, he did this again and again and again. I tried in vain to distract him, stop him to no avail. He wasn’t going to stop. I looked at the psychologist through tears and we all agreed to leave.

We walked out the hospital. Shocked hospital staff chased after us. (Like a scene from Benny Hill I can sort of laugh about this now but at the time it was very serious) Got in the car as staff tried to talk us into staying as they were worried about C’s breathing, C continued to head bang, so we drove. C calmed and was now fighting tooth and nail to stay awake. The hospital phoned me on my mobile and we went back to talk to them. The consultant and various staff were waiting for us at the road side. I agreed to give it one more go as apparently now 40 mins on the drug was at its peak and they assured me that C would not remember, and I didn’t want to put C through all this again another day. A wheel chair was brought out as they said C would not be able to walk. I opened the door, C got out and walked! Much to the amazement of staff. He was pliable enough now to let us guide him straight into the theatre where we held a mask over his face until he did eventually pass out. We were ushered out.

Didn’t have to wait long till we were called back. Blood had been taken, his nails were short (looked weird) and they had done 1 filling (which could explain some of C’s unexplained SIBs?) there was also some erosion on his back teeth from reflux. But after 21 years of not being able to brush teeth and poor diet – quite impressive. The consultant said because of the 'trauma' to Cs head he would recommend a referral to a ......... dermatologist?!! And C would not have to come in to visit a dentist again – the dentist would go to his home annually. So maybe they did learn something that day?

We were then told C would sleep for the rest of the day because of the amount of drugs and GA in his system. Half an hour (I held C’s hand for a whole half an hour :)))) ) later C was awake and up. We were out of there!

So we got there in the end, but at what cost to C’s head. It’s frightening and left me feeling emotionally exhausted for a couple of days. How it made C feel I can’t imagine. We have to do this again in 5 years. I will push harder for rohypnol next time. Has anyone any experience of this - or anything else that would work better?

I really hope they are right and C won’t remember.

Expectations

2010-05-17T09:07:00.003+01:00

C’s best interest meeting to determine his ability to consent for a GA didn’t go as I expected.

It was straight forward and very positive!! Everyone easily agreed that C does not posses the capacity to consent so his human rights have been denied (sounds awful doesn’t it) so we have the go ahead. We will next have a pre op meeting to try and sort out how we are actually going to go about administering the GA (with least risk to himself and others) as sedatives and tranquilizers have little or no affect, you can’t prepare C with social stories or pictures, visits etc nor distract him. And his fight AND flight responses are acute!

It was also agreed that we could take blood to test for various things, But no decision as yet was made about cutting his nails.
I am not at all looking forward to this as we have been though it once before and know how traumatic C (and I) found it. His self injurious behaviour is these days usually brought on by the actions of others (Suit you, sir? - brilliant article - a must read for staff) and this will be one of those times you can’t avoid.

We agreed to use clinical holding techniques with a cut off point if not working. build have produced a code of practice for physical interventions. Am researching other ways to avoid this if poss – any suggestions welcome!

But at least these days they are prepared to give oral care to people with learning disabilities. It is not that long ago expectations were so low and basic privileges were denied. Children were labelled ‘in educable’. LEA’s have only had to educate all children with special needs since 1970. Long stay hospitals are nearly all closed. Here’s a harrowing reminder of what those days were like - loss of individual and social identity, gender identity, family identity to name but a few – and it wasn’t that long ago

Attitudes are changing. We no longer have to shut our children away, or put up with babysitting (of adults and children) without meaning and value. We want the best education not just ‘training’. Opportunities, real choice and respect. Person first and neutral language. Personalization across all care settings. To be free from bullying on and off blog.
We are no longer afraid to rock the boat and ask for more. We want the same rights as everyone else. Laws are slowly catching up and being updated because of pressure as parents and disabled people have much information at their finger tips and higher expectations. We need to continue to challenge low expectations.

Respecting and involving people who use services

People understand the care and treatment choices available to them. They can express their views and are involved in making decisions about their care. They have their privacy, dignity and independence respected, and has their views and experiences taken into account in the way in which the service is delivered.

As of October 1st the inspections that the CQC do of adult care homes will be based on 2 laws:

Health and Social Care Act 2008 (Regulated Activities) Regulations 2010

Care Quality Commission (Registration) Regulations 2009.

The law that care homes are inspected under at the moment is the Care Standards Act 2000 –

this legislation will come out of use.

Which means things will be less process driven and more in tune with person centered approaches so outcomes should actually meet people's needs,

C’s service provider have been great as they are listening to me (and C) and are very receptive. C is one of the youngest therefore my thoughts are different to what they are used to. So my ~~stirring~~ input I feel has been constructive.

C has been stirring too!

The most exciting thing about both these photos is apart from feeling happy and relaxed enough to take his fingers out of his ears – C is doing these things independently and not hand over hand! (I have never seen C press a button before on his own!) Possibilities for Facilitated communication ??? Or i may have to invest in an iPhone with the new Grace app (picture exchange) Great initiative Lisa
But what i would dearly love for C would be to be able to turn his TV or radio on himself (especially in the middle of the night!). And now i feel he is getting there :))

Change can happen

Consent

2010-04-01T09:12:00.008+01:00

Before C was 18 I was always able to give parental consent to things. Now he is an adult – I can’t. It hasn’t been an issue till now.

We went to the dentist (hospital dentist that we waited over 6 months to get the appoinment)! And no surprises C did not let the dentist anywhere near him.
C has gum disease (you can see it when he gives one of his enormous smiles) Teeth cleaning he can’t do himself and depending on his mood depends how long he will tolerate a brush in his mouth. Diet over the years has been very poor. And he has acid reflux (which affects teeth as do some medications). He does not always show when he is in pain. I explained all this. But the dentist was very negative.

The NHS has a responsibility to ensure equality of provision of care to all groups in society. There is published evidence that people with disabilities are at risk from higher levels of oral health problems, they tend to have fewer teeth, more untreated decay etc.

So if they know this - why so evasive? Maybe the look of horror on the dentists face when she saw C head banging explains it?!

A week later the dentist got back to us and has called an in best interest meeting. To see if it would be in C’s best interest to have a general anaesthetic or just to leave him till he tells us he has a problem. But of course we would somehow have to work out that it was his teeth making himself injure.

We also have to prove C’s lack of capacity in making a decision. It is assessed on if he cannot do one or more of the following: (He cant do any)
Understand information given to them about the decision.
Retain the information for long enough to make the decision.
Use or weigh up the information as part of the decision making process.
Communicate their decision by any means such as talking, sign language or blinking.

This is from the Mental Capacity Act (MCA DOLS) which were introduced in 2005 after a man with autism and learning disabilities was prevented from leaving hospital. His carers took the case to court where it was found he was deprived of his liberty unlawfully. So to prevent further breaches and provide legal protection for vulnerable people who may need to be deprived of their liberty in their best interests, the MCA DOLS were put in place.

There is an easy read version here which actually uses a case like C’s and they did agree to a GA. I know there are risks attached but trying to look at it from C’s point of view the risks from his head banging are greater.

So if C is granted this we are also going to ask ‘permission’ to cut his nails.

If C were a real person he would have the same privileges as neurotypicals and not have to prove his capacity or have best interest meetings (in 2 months time!). Or have to ask to cut his nails! He would just be treated.

When C reached 18 as he cannot manage his own financial affairs I applied to the DWP to be his appointee and manage his benefits. It was very straight forward. (I also applied for a passport and a joint bank account before he was 18)

(UK) Power of Attorney, this must be set up with the persons consent whilst they have the capacity to choose who they would like to appoint.
If this is not possible a different process is followed and you need to apply to the Court of Protection to become a Deputy.
But there is a bit of a back log.

~ ~ ~

Can I ask – do people who work with your child know that you blog? Did you tell them or did they find out? Has it changed their relationship with you? C’s home maybe finding out I blog from an article that I have written and I know they get the publication. So should I be open with them??

And no C hasn’t said anything else :(

C Spoke!!

2010-03-04T15:45:00.002Z

Apparently!
After listening to high pitched oooooo’s and eeeee’s for 21 years I didn’t hear C's first words!! ‘Allegedly’ 1 member of staff heard C say... ‘hello’! Not only that but then when offered a choice of DVD’s he said ‘that one’.
I’m still trying to get my head round it! Did she miss hear? Was it wishful thinking on her part? I don’t know. But until more than one person hears C say something (if he ever does again) am trying not to get too excited!! But I never dreamt that his first word would be hello!! Very polite!

I was very honoured to be part of the editorial team for the Autism Strategy. And was excited to see what they had done with it when it was finally published and sent out on March 3rd. But I must admit to being very shocked - pleasantly so when I opened it to find a photo of C on the front page!

Fulfilling and rewarding lives

But this photo was taken at a not very fulfilling or rewarding time of his life. Some of you may remember when he was in his archaic first home they framed and sent me this photo after I had made several complaints about his treatment, (I actually blogged about this very photo at the end of this post back in 08!) I think they were trying to show me he was happy. So it doesn’t bring back very good memories.

But that aside I think the autism strategy is a good foundation to build on. Health and social care professionals and the public sector (i.e. the Police) will be given training in autism. So will depend largely on how good and extensive this training is. And local authorities will have to include autism in their planning of services.
The CQC have published their first yearly report on the state of health and adult social care in England. State of Care. Together with their new regulations which are based on Human Rights and with the Autism Strategy things are looking hopeful.

I wonder what C will say next?!

The hypothetical cure question....

2010-01-05T09:12:00.005Z

"If I could snap my fingers and become non autistic, I would not - because then I wouldn't be me. Autism is part of who I am."

Temple Grandin

And that is how I see C. Autism is part of who he is.
Therefore I have never given any thought to the hypothetical question of ’curing’ C of being himself. Autism is his way of being. So I feel it is not my choice to make. It is not about me.
Jim Sinclair says it very well in his article Don’t mourn for us.

I was thinking of giving up blogging as C is doing well. Or maybe just doing the odd post if I had something to say. So when I saw this post - as C and I were talked about in some of the comments I felt it warranted a reply. So I gave it some thought.

And this is what I ‘honestly’ think...
I see Autism more of a difference than a disability. But I do see C disabled by society by attitude and prejudice, exclusion, lack of resources and at times the wrong support, Etc.

So if I were to give C a magic pill – a brain altering drug. Would he become ‘normal’?? Or would he still be 1 of thousands of NT people who self harm? Or would he be an NT who goes to heavy metal concerts and head bangs?! Would he still have gastro problems? Still thrive on little sleep? Would he still prefer to be a nudist? Would he still have a foot fetish?! Would he still get excited standing on platforms in his anorak watching trains? Would he loose his passions and excitement of the things most of us don’t even notice?
These are all normal traits that C already has. OK so maybe a bit more extreme!

There are many tangents/debates around all this. Low and high functioning. What about other comorbid conditions. Children who have tragically died from various therapies or restraints. Or murdered maybe from fear or lack of support? Disability is normal. Parental genetic testing? Prevention. Eradication.

So what do we really mean by cure? To make someone conform? To be socially acceptable? Assimilated into the collective?!
Why can’t society accept everyone is different?

The journey to acceptance is different for everyone as we each have our own issues to deal with I have seen some parents get stuck at different stages (especially anger). And as a society we take even longer as we have seen with differences of ethnicity, gender etc. Diversity is overlooked within groups and produce stereotypes that can reinforce prejudice and discrimination. And so it goes on.

Yes life has been very difficult at times for C and so in turn for me. But there is also much joy.
From the first day C started head banging (he even does this when happy) i have looked for ways to give him other means to communicate. He had early intervention. Went to the best schools i could find and has been under a Challenging Behaviour specialist team. I continue to look for ways to help C communicate without hurting himself. And make sure there are people around him who understand him and want to support and help him to. And C continues to show progress at his own pace. Acceptance doesn't mean doing nothing.
We all struggle at times. No one is truly independent. C does have a quality of life even with severe challenging behaviour. Which is what I have tried to show through by blog rather than ‘blowing roses’.

Education is the key. Not only for our children to help them reach their potential but to society as a whole in raising awareness as one of the biggest problems that I see is the way many people view autism.
It’s such a shame that this hypothetical question divides our community.

Follow up

Harold has continued this discussion on his blog - Autism Cure? It's About Functioning Not Conformity.
Kev from Left Brian/Right Brain has offered his opinion - So what is ‘cure’?
And the lovely Starrlife writes about Removing the Essence

Being complacent

2009-11-20T15:30:00.006Z

An easy trap to fall in and we all do it.
When our children have high levels of support and thrive staff can become complacent (and of course funding issues can play a part) support is reduced and then people wonder why they are not coping so well. Crystal Jigsaw’s daughter is doing well with support as is my 4 year old nephew with his early intervention; they are threatening to reduce both their hours.

Even as parents we do it. C recently gave me a sharp reminder of this. I’ve been taking him on the London Eye for a while now which he loves. A couple of months ago on our way to the Eye because of engineering works our journey had to change and I didn’t heed the early warning behaviour signs and use any proactive strategies, all I could do was react when it was too late, but C was too far gone and there was nothing I could do. I’m sorry C.
Green – calm and relaxed
Amber – anxious
Red – incident
Blue – calm down but may reignit

We have been back on the Eye with the moral support of a blog friend – thank you Mother X and boys.

Staff can also become complacent about people’s behaviour. In Cs case I’ve heard staff say C self injures because that’s what he does. They don’t expect anything else. Not - why don’t we look at why he’s doing it and address it. Thankfully Cs new home are not complacent about this and have realised sometimes he actually causes himself pain (after the London Eye incident he had concussion for a week) and through using a version of the Abbey Pain scale. Which can be found at Dis Dat (as C can’t use pain pictures) they were able to monitor how he was feeling.

The CQC are implementing new regulations next year across all adult health and social care services. They have done a huge public consultation and are still consulting with various groups – carers being one of them. From this - services are to be more (the ‘in’ words are!) transparent and accountable to everyone, carers will be more involved (if they want to be) even when their person leaves home. I have therefore approached C’s service provider and suggested they start a relatives group to benefit their residents and staff and ensure good practice and hopefully no one will fall into the complacency trap. They have readily agreed.

Have you any stories of complacency and/or how to avoid it?

Challenging Behaviour

2009-10-20T10:57:00.008+01:00

For me what has been the toughest - C’s Autism or his severe learning disability? Neither it’s his behaviour that is so challenging because of sensory distress that has shaped both our lives.

What struck me very early on in Cs life was the injustice/stigma he has had to face on so many levels because of his behaviour that has challenged and people don’t see that he is a person first doing the best he can.

I found this recently that I had written describing C’s early years. By C proofing the house, early specialist intervention and continued support, C has come a long way since then. It hasn’t been easy for either of us but I hope my blog is testament that you can get to a place where even with ongoing challenges life can be enjoyed.

Its 2.30 am. I am woken by the sound of head banging. He’s awake, I’d better take him down stairs before he wakes everyone.
I climb over the stair gate to be hit by the stench of smeared faeces. I trip on the ripped carpet, the curtains are on the floor. The woodwork is chipped from thrown objects and teeth marks. There are holes in the walls from his head.
How do I get him down stairs? If I pick him up I am I danger of being hit, kicked, bitten scratched and my hair pulled out. I go and get a biscuit and lure him out.
Now what do we do in the long dark early hours. He does not watch TV or play. I had better take him out for a walk – but that means I have to somehow get him dressed. I’ll have a cup of tea first. I’ll have to drink it standing up as if I sit down I am attacked.
Everything in the house is locked, hidden, stuck down or tied up. Anything he can lift is thrown, kettle toaster etc etc. I cannot take my eyes off him for a second. But I do to pour the tea. CRASH. My husband won’t be happy, it’s always my fault. He has put his head through the safety glass on the TV. I had better put his helmet on. I bend down in front of him – he knocks me out cold with a single head butt.

My son is only 3 years old.

I can’t take him to the shops or other people’s houses. No one comes to see me anymore. Neighbours cross the street when they see us coming. I am given respite but that doesn’t last long as they can’t ‘contain’ him.
He goes to an SLD school. They call me to pick him up as they can’t cope. They start restraining him.

My son is only 4 years old.
Using ABC charts (which is a bit of a pain, but did help me to understand) and Positive Behaviour support we were able to listen and help C a lot in those early years. And I learnt not to reinforce his behaviour with biscuits!! Or to kneel in front of him to put his helmet on. I found a specialist school for C with good SALT support as communication is the key. But C in his wisdom chose not to learn PECS or any signs as his head banging works so well for him. But sometimes he takes it too far and knocks himself out. So this we are still working on. And now as an adult a good PCP is the key.

"It is not a matter of what causes self-injury or what causes aggression or what causes stereotyped or repetitive movements but for each of these difficult forms of difficult behaviour, what does it do for the individual, what purpose does it serve for them in their life?" E. Emerson

I recently spent a couple of days with The Challenging Behaviour Foundation and met other parents of young people around C’s age. And even though their diagnosis varied they were all SLD with severe CB, the experiences and impact this had had on our lives and the paths we took interestingly were very similar. And most of our children had been subject to restraints both physical and chemical. Exclusion and seclusion, not only within the system that is there to try and support them but from family and friends as well. Despite all this what shone through was we all had a great sense of humour even though we were tackling a very serious subject.

The other thing that gelled us together is we had learnt to ‘play the game’ through networking (for me I sat on committees) and empowering ourselves with knowledge. (wish I had had the internet in those days!)

The Challenging Behaviour Foundation is expanding and doing some very important work and hopefully will be reaching more families and professionals. They offer a range of information and support . They have a very useful set of 4 DVDs which would benefit anyone who is starting on the challenging behaviour road. . You can phone the CBR helpline as they give these DVDs free to any families caring for someone with severe learning disabilities.
Their UK number is 0845 602 7885

C is still settling in well. He has had 2 months on his own in the home which has given the staff and C a good chance to get to know each other. A young lady has now moved in and as his routines are now established he hasn’t seemed to mind. However he still won’t let anyone near his nails, but I think when the day comes that he does, is when I know he has truly settled in.

Celebrating 21 years!

2009-09-27T16:30:00.004+01:00

I want to bounce into C’s room singing ‘happy birthday’ giving him a big hug and showering him with kisses and presents. But I know what would happen if I did. And it is not about me.

So I walk into C’s room, he spies me with his peripheral vision. And then he looks at me, head tilted upside down, fingers pressed into the corner of his eyes. C hums loudly to drown out anything I might say. So I whisper in short sentences not directed at him but to the birthday present I am holding. His humming becomes quieter as if he is straining to hear what I am describing. I don’t give C the present as I know he will push it away so I open it and leave it in his room for him to look at in his own time. But I know he won’t touch it, he hardly ever touches anything, his fingers are glued in his ears.

C doesn't want for much, I have to be inventive. So apart from a few presents I give him experiences – memories.
Because of C's love of loud music we went to see We Will Rock You.

And for his love of travelling fast and in straight lines we went on a speed boat trip on the Thames.

I could not blog without mentioning the dehumanizing (on so many levels to both Autistic people and parents) Autism Speaks video. But I have been finding it hard to put into words how it has made me feel as a parent of a young man who is 'low functioning' (I hate that term as C 'functions' as best he can) Even though C does not speak - with patience and understanding I learnt to listen to him.
His first school would not listen to him so I fought for one that did. His first group home did not listen to him so I found one that does. All without voodoo or fighting a disease – but fighting a system and by doing so I hope we have educated a few people along the way in their attitudes and listening skills.

By accepting C's Autism and working hard to help him I am not a warrior, or victim or hero. I am a mum who listens to my sons needs - it is C who has had to do the real hard work every day.

So don’t listen to Autism Speaks and their negative stereotypes.
(Excuse me while I have a C moment humming loudly with fingers in my ears)

With the right attitude and support and understanding children like C grow into adults who do have a good quality of life.
My son was not robbed from me and nor were my dreams.
I still want for C what any mother wants - for him to be happy healthy and fulfilled without pity and prejudice to reach his full potential.
We are hopefully on the right track.

Happy birthday C! I did manage to get 1 kiss in! You have taught me so much. I am so very proud. May you carry on touching peoples lives. Diversity makes the world a better place and love makes us stronger.

Liberty Festival 2009

2009-09-06T09:00:00.006+01:00

Liberty Festival; celebrating the contribution of Deaf and disabled people to London’s culture, in Trafalgar square. A lovely afternoon out with lots to see. I took C last year, but this year I went on my own which meant I could stand around and watch things – which I can’t do with C (unless its trains or feet!) There was much going on...

From comedy to music.
To aerial street art from Blue Eyed Soul and dance.

The story Swan for children and talented Mouth and foot painters.

Marc Brew showed a very touching performance ‘Nocturne’ which if C had been there I had visions of him stripping off and bouncing on the beds (as he has done before in public!).

There were stalls. BBC Ouch was there, Attitude is everything, Unison, Disability Law service, The Olympics to name but a few. Last year there were a few Autistic things going on, but sadly I didn’t see any this year.

The lovely Tracey was there from The Independent Living Alternatives was there whom I met last year when she gave a talk to the London Autistic Rights movement (who remembered me as Monster Munch!) and was desperately trying to find something for C when things were going wrong for him. But even though I do like the idea of Independent living I find it hard to see how it would work with someone like C who is so vulnerable and easy to take advantage of, especially after our recent experience of staff. But who knows what the future holds. Would love to hear of where it is working.

Antony Gormley’s fourth plinth had a lone person on it - a living monument , who must have had a great view of what was going on. There has been a parent up there raising awareness. And Julie will be there on sept 15th. I also applied to do this - but so far no luck - will call upon you all for inspiration if I do!

I love Antony's work and blogged about his exhibition I went to a few years ago and how it related to C.

C is continuing to do well and I am happy with how it’s going. He is looking so much better, standing up straight, smiling, a glint in his eye. Change though is hard for C and he is still head banging more than I would like, the calcified oedema on his head has become puffy as it fills with fluid before hardening. And that’s what I can see on the outside of his skull – what is happening on the inside? As Tanya describes it - transition a time of hope and anxiety.

Touch wood

2009-08-14T15:05:00.003+01:00

I still can’t quite process the fact that C’s new home is working really well!!

Learning from all the negative things the last home did, I talked at length with this new home - they have listened and put everything into practice.
It hasn’t all been plain sailing – but it is positive.

The last home C refused to let them take his helmet off. This time C is refusing to let them put it on him. Rather worrying for me, but his head banging has been minimal, and the staff have been learning fast. So he was obviously telling them he didn’t need it.

Apart from listening to both C and I. The main reason it’s working out so well is at the moment C is the only person in the home. The provider has about 12 homes across the county, they had a few vacancies (because of people moving into independent living) so had a reshuffle making C’s home just for school leavers. C being the first one in there means anyone else moving in will have to be compatible with C. He has about a month before the next person moves in giving plenty of time for the staff and C to get to know each other. I couldn’t have asked for better timing.

And talking of good timing. The week C left the old home I received a questionnaire from the Autism Accreditation programme (they review every 3 years) asking my views on the service provided! As you can imagine I had a lot to say! I am also taking up C’s experience with the Care Quality Commission.

So as C’s life is picking up and beginning to take on a new positive shape I am trying to come back down to earth after a couple of years of stress. I am so relieved I had the strength not to give up and accept things as they were. It at times has been very emotionally wearing but so far touch wood it has been worth it.

I can recommend Bach flower remedies and Lavender fields.

Am off to Autscape next week - should be interesting :)

The future

2009-07-21T07:57:00.002+01:00

2 weeks till C moves. Sleep alludes me as thoughts run round my head. Visits to C’s new home are going as expected –difficult, traumatic. But each visit getting a little easier, its hard to know how much he understands. In this last year he has worn his helmet out – and I want to put him through a move again. The decisions we make for our children are over whelming at times.
And both C and i have been managing our stress in different - but the same ways.

After 2 years of searching for a home a specialist home I thought would meet C's needs where he could grow, and had the right experience to cope with C’s level of challenging behaviour. But I knew after only 3 weeks it was not the right place. But I gave them a chance, and C a chance to settle. I tried talking to them. But the things they did continued to shock me, sadden me. I started looking elsewhere. I don’t entirely blame myself. Their initial assessments should have shown them it was not the right place for C. But they went ahead. They did a good PR job on me. They failed my son.

This time I feel the assessments have been a lot better and I have been involved. I was actually asked to go over Cs PCP – a first. I’ve been made to feel my insights into C are valid and useful. After all C has been training me for nearly 21 years.

I am also being involved in some important consultations where I can put C’s/my experience to good use. You can get involved too. And maybe we can save other people from going through what C and many others have had to endure.

Adult autism strategy consultation

and the

Consultation on new registration standards

The CQC’s draft guidance is very encouraging and positive. They will have new powers to ‘enforce’ standards and will not just have an impact on ALL care homes but other care providers such as GP’s, dentists, hospitals etc

Autistic people need allies and not just from parents. When C was small my motivations were getting him the right educational support etc. My views have evolved over the years and its now more about his human rights, dignity, respect and choice.

If we cant change the attitude of people who work with people with Autism what chance do we have with the rest of society.

Messy play

2009-06-23T10:00:00.000+01:00

At last I have a moving date for C - in 6 weeks. Which is a huge relief. And this time I feel more prepared as I have some idea how C will react. But I also have different concerns this time as C has regressed in so many areas since his first move and after 11 months is not yet back to where he was. But I know the new home will be more suitable in the long run so hopefully C will settle quicker this time and begin to regain what he has lost.

Over the years I tried many messy tactile substances in messy play to deter C from smearing. But never found a good enough substitute! He still smears but these days it is thankfully a bit more contained. Trying to keep C’s nails clean though as he won’t let anyone cut them since he moved is very difficult. Any advice gratefully accepted!

This weekend my sister and her husband went away and I looked after my nephews J (3.5) who is Autistic and O who is just 10 months. So I put my messy play to good use. It is great for gross and fine motor skills, coordination, concentration, observation, communication and stimulation of all the senses.

J has never liked the feel grass under his feet but really enjoyed getting his feet gooey. We enjoyed pouring, scooping, grasping, transferring, catching, placing, exploring all with lots of eye contact.

And without even realizing J was soon walking on the grass! I do love being an aunt!

Animals have more rights...

2009-06-01T15:10:00.002+01:00

Unlike child abuse and animal abuse (The Children's Act and The Protection of Animals Act), there is no single piece of legislation that deals with the abuse of vulnerable adults.

We all know a vulnerable adult, a disabled or elderly member of the family or a neighbour. So this concerns everyone.

Through out out history people have abused their power like Hitler. Or their trust like Dr Shipman. Or parents like Josef Fritzl. Or so called specialist centers like the Judge Rotenburg Center. (Facebook group)

It is still happening today. Every day. Abuse takes many forms. A young man Jesse Moores tragically died. His death could have been prevented (Facebook group) if someone had just spoken out.

No Secrets is the current Government 'guidance' in England

Guidance does not carry the same status as legislation; instead local authorities have their compliance assessed as part of a statutory inspection process. With ‘good reason’ a local authority can ignore such guidance. As a consequence vulnerable adults do not have the same statutory protection as either children or animals.

Such crimes as mistreatment are regularly committed 67% according to Action on Elder Abuse in care settings and by carers
There is a raft of legislation keeping people safe from harm (Human Rights Act 1998, Care Standards Act 2000 and Regulations, Mental Capacity Act 2005). However, prosecutions are very low.
Most councils have recognised that protection (safeguard) of vulnerable adults is paramount and have implemented multi-agency policies and procedures to protect vulnerable adults from abuse.

It is our duty to look out for the signs and to do what we can to prevent it. Staying silent is not an option.

Vulnerable adult definition
A vulnerable adult is a person aged 18 years or over who is or may be in need of community care services by reason of mental or other disability, age or illness; and who is or maybe unable to take care of him or herself, or unable to protect him or herself against significant harm or exploitation.

Everyone has a right to:
Live free from violence, fear and abuse
Be protected from harm and exploitation
Be independent – which may involve some risk
Say 'No' to anything they don't fully understand

Forms of abuse

Institutional abuse
Institutional abuse can occur in a care home, nursing home, acute hospital or in-patient setting and can be any of the following types of abuse:
Neglect.
Physical abuse.
Sexual abuse.
Verbal abuse.
Discriminatory abuse.
Psychological and emotional abuse.
Financial abuse.

Neglect
Neglect of a vulnerable adult can be any of the following:
Not having the help you need to have a bath or shower if you are unable to do so by yourself.
Not getting enough food or drink.
Stopping you from accessing needed care and/or medical services.
Not being given the medication that has been prescribed for you.
Being given medication to make you sleepy when it has not been prescribed or giving you the medication at the wrong time or in the wrong quantities.
Not getting help to stay warm and dry.
Only having old or dirty clothes to wear.
People not caring for you properly.

Professional abuse
Professional abuse happens when a professional does any of the following:
Takes advantage of their client or patients trust.
Exploits their vulnerability.
Does not act in their best interests.
Fails to keep professional boundaries.
Abuse may be:
Sexual.
Financial.
Psychological/emotional.
Physical/neglectful.
Discriminatory.
Professional abuse always involves:
Betrayal of trust.
Exploitation of vulnerability.
Violation of professional boundaries.

Domestic
Any incident of threatening behaviour, violence or abuse (psychological, physical, sexual, financial or emotional) between adults who are or have been intimate partners or family members, regardless of gender or sexuality.

Discriminatory abuse
Abuse of individual rights is a violation of human and civil rights by any other person or persons.
Discriminatory abuse consists of abusive or derisive attitudes or behaviour based on a person's sex, sexuality, ethnic origin, race, culture, age, disability or any other discriminatory abuse - this includes Hate Crime.

Elder abuse
Can be any of the following:
Physical abuse.
Psychological abuse.
Financial abuse.
Sexual abuse.
Neglect.
Abuse can occur anywhere:
In some one's own home.
A carer's home.
In a day care centre.
In residential care.
In a nursing home.
In hospital.
Both older men and women can be at risk of being abused. The abuser is often well known to the person being abused.
The abuser may be:
A family member.
A friend or neighbour.
A paid or volunteer care worker.
A health or social worker, or other professional.
Older people may also be abused by a person they care for.

Financial abuse
Can be any of the following:
Someone making you take your money out of the cash machine for them.
Taking money from you.
Borrowing money and never giving it back.
Stealing your belongings.
Someone getting you to sign something and you don't know what it is.
Someone taking your pension or other benefit.
Someone asking for money for visiting you socially.

Physical abuse
Can be any of the following:
Being restrained in a chair or locked in a room.
Punching or kicking you.
Throwing things at you.
Grabbing, pushing, poking or slapping you.
Hitting you with an object.
Pulling hair or biting.
Tripping you up.

Psychological and emotional

Hurtful criticism.
Name calling.
Sulking.
Pressure tactics.
Lying to you, or to your friends and family about you.
Persistently putting you down in front of other people.
Stopping you from seeing people you want to see, including friends and family.
Never listening or responding when you talk.
Monitoring your phone calls, emails, texts and letters.
Checking up on you, following you, not letting you go out alone.
Frightening you into doing things you don't want to do.
Making you unnecessarily distrustful of other people.
Upsetting you on a regular basis about things that don't matter to the extent that you may even feel unwell.
Psychological and emotional abuse is generally part of other forms of abuse such as:
Domestic abuse

Sexual abuse
Sexual abuse can be any of the following:
Someone touching you where you don't want to be touched.
People getting too close to you.
Someone making you feel uneasy and upset.
Someone hurting you and making you feel scared.
People not listening when you say no.

Additional factors
Any of these forms of abuse could either be deliberate or the result of ignorance or lack of training, knowledge and understanding. If a person is being abused in one way they are often being abused in other ways too.

What to look out for:
Unexplained injury
Signs of fear or distress
Withdrawal
Neglect
Theft, fraud or financial exploitation

What you should do:
Do act if you suspect a vulnerable person is being abused
Do talk to the person – listen carefully
Do give the person your full attention
Do telephone someone

What you should not do:
Don't ignore it
Don't promise to keep it a secret
Don't put it off (there needs to be better whistleblower provisions )

Autistic children grow into Autistic adults all too fast. I have been very grateful over the years when staff have ‘off the record’ told me things that have happened to C. I hope with greater awareness of Autistic Adults because of campaigns like the NAS I Exist and Safeguarding adult’s and better quality controls things will continue to improve.

After all we could ALL end up in a care home one day.

Safeguarding Adults is every body's business. Your action could prevent abuse.

Every day, people say nothing!
Please say something.
You could improve someones quality of life or maybe a tragic death could be prevented.

Do-Nut

2009-05-16T07:36:00.002+01:00

Whilst waiting to move C from his present group home I have been having C home more. In the last couple of years he has been more receptive to going to new places which is fantastic. So in a bid to try and wear him out (he doesn’t sleep much) we have been trying new things. But i only seem to wear myself out! The latest was Do-nutting (as we are not bound by risk assessments!).

Here’s a short video clip to illustrate what it is...

Trying to get C to sit in a Do-nut was a feat in its self – and took some practice!

After I had manoeuvred C into positive and then got myself seated my do-nut – I looked up and C was gone! You’re supposed to wait till everyone is ready and then all go together! I had to run down the side of the slope to catch him up as I knew he wouldn’t know what to do at the bottom and wasn’t sure how he would respond to a member of staff talking to him. I only managed to beat him down the slope as he was using his size 10’s as breaks!!
That was the only mishap.
C needed a bit of time out after that in the furthest corner.

This time he held on till i was ready.

Great fun! The aches and pains the next day were worth it!
We are top middle on way down

Over the last 20 years I don’t know how many letters/emails/phone calls of complaint I have made advocating on C’s behalf. I try and make them constructive and have had some very positive outcomes not just for C but for others to. I have changed attitudes and some policies.

But it can be very wearing. Having a good social worker on your side supporting you can make a lot of difference. I have been very fortunate with my social workers (on the whole). Social services tend get a bad press, and yet many work tirelessly. As well as complaining I also think it is important to give praise where praise is due. So when I saw Health and Social Care Professional of the Year Award were looking for nominations – I nominated my social worker. My nomination has been accepted and we both have been asked to attend the award ceremony next month. In the mean time they are sending a film crew to film both my social worker and I and possibly C?!

No holes

2009-04-24T08:40:00.002+01:00

I’ve always tried to be positive and creative from dealing with smearing, sleep deprivation to not eating and head banging. These are all forms of communication – I just have to try and work out what C is trying to say. Sometimes it is quite obvious and other times it has taken years to work out. After 20 years I think I can read C quite well! The majority of stress for both of us still comes from the so called ‘professionals’ who think they know better. I wonder if that will ever change? The move from an up to date forward thinking school to a group home who is still in the last century has been quite an eye opener, and at times soul destroying. I am still working on moving C – getting there slowly.

But anyway I digress as I want to share this recent photo with you. A rare moment with C as he doesn’t like to be touched (which makes helping him dress and wash etc interesting!) a moment that needs no words.

"I want to live in a world where I can say 'I am Autistic' and not be expected to be a bundle of abnormalities and deficits. I want the word 'Autism' to provoke not a mental defect or something that needs 'fixing', but an image of a wonderful and unique person with a wonderful and unique way of being and experiencing the world." - Amanda Baggs

There are no holes in C's Sky.

Out and about...

2009-03-29T09:27:00.001+01:00

C has been assessed by another home. Calculations have been done. His current home have now been told that he is leaving- oh you should have seen their faces!! So we are now working out a transition plan.
In the mean time C and I have had some great days to distract us

C enjoys the London eye so much whilst waiting in the queue he was so excited (big loud stimming!!) they gave us a pod to ourselves!!

As C seems to love views I had wanted to take him up the Spinnaker tower in Portsmouth. So when I heard DJ Kirkby was doing a book signing there it was a great excuse to go!
The above photo is C standing on Europe’s largest glass floor 100 meters up.

And we both very much enjoyed a Duck Tour round London. The tour is both on land and on the river Thames. C only tried to dive in once!

I have known Lucy Baxter for years and was not at all surprised to see her stirring up public opinion recently. Some of the things she said were of course taken out of context. But has highlighted a taboo subject and much needed debate. Seeing our young men as adults with feelings not perpetual children who listen to nursery rhymes.

I would like to wish my brother well as he does a charity bike ride for MS in America. I just hope he doesn't end up like i did when i did my charity hike in the Himalayas. Let me know if you would like to sponsor him :)

And last but not least.
I wasn’t going to go on the London Autism Rally yesterday as to advertise it they were using such words as epidemic (which as you will see here is not a good word to use) and a few other words I did not agree with. But the organisers said they wanted to try and include everyone, and they did change some of their wording. So when the London autistic Rights Movement asked C and I to go to promote neurodiversity we did! Here are some photos.

There were many banners from pro -cure to anti-vaccine so i am very glad i was there with The London Autistic Rights Movement to make the case for acceptance. However to on lookers it must have been very confusing.

Out side Downing street.

We ended up in Trafalgar square.

I met some lovely people and was asked on several occasions why I didn't want to cure C. So i came away feeling as though i had done my bit. C enjoyed his day out to. And i was beaming with pride that we did this together.

Update

2009-02-27T10:00:00.007Z

C and I were minding our own business as we do ( he was feet watching and I was watching him) when suddenly 6 'armed' police men swooped down on him at our local airport. Thankfully they just tried to talk to him as he was acting suspiciously!!!! I stepped in, and they left with apologies.

Incidents like these (its not the first time) are the least of Cs and my worries at the moment. Its been 2 months now since I made it known to Cs case manager that I want to remove C from his group home. Nothing happens fast as they have to have holidays. So am playing the ‘funding game’ which is why i cant just take him out. Thankfully years of experience of this has held me in good stead even though it is different in the adult world, but I am getting there slowly.

Cs home has not improved and to give you a taste of their ethos this is the CD they gave C for Christmas. And yes this was after C had been to a night club!

And that was after they told me what they were giving him and I told them in no uncertain terms that I felt this was totally inappropriate (or words to that affect!). They went ahead and gave it to him anyway.
I wont go into how this made me feel as I'm sure you can imagine.

It has been taking a toll on my health. Being a single parent is hard at times. This being one of them making such huge decisions, especially as I don’t want to get it wrong again.
I have found another home, an assessment has been requested. The new home is not autism specific, and they have the opportunity for independent living for the future which is great as I do love the idea of this, but not just yet for C. I recently went to a meeting at The London Autistic Rights Movement which was very inspiring.

I in 5 care homes inspected by the CSCI fail to meet the national minimum standards. Which does not say much for the state of social care in the UK. There is a culture change from not just the size of the room and where the medication is locked up to more about needs and expectations particularly equality dignity and human rights and with the new Valuing people now document this will continue over the next few years.

Disability has been in the news this week. Apparently we have a new scary CBeebies presenter!!
And I am sure you have heard the very sad news of the loss of David and Samantha’s son. My condolences go to the family.

And in Milan on criminal charges of defamation and privacy violation in regard to a video posted on Google’s Italian site of a young man with Down syndrome. Not sure that it will get anywhere, but at least it is being taken seriously, as you know this affects C.

The Autism Bill is being debated in Parliament today, it has had great support. So i look forward to hearing the outcome. Just heard apparently it went very well and is now through to the next stage. You can watch it here.

And i would like to say thank you to Suzanne for making me this beautiful dress which was inspired by my CD and C's love of reflective light. I was really chuffed!
And i would also like to say thank you to Cathy, Neo-Conduit and Viva Vavoom for all giving me awards which i have put on the side bar of my Faces blog.
Norah - could you email me as i pulled your name out of a hat to win a signed copy of the Shrep rap :)

Think that is all my news for now. Will be back again to let you know how things are going. But its all so painfully slow.

Oh and be aware of the Easter rabbit.

Shrek Rap - The Single. Brought to life.

2009-01-27T17:19:00.003Z

Another night for me to remember.

And what a night!!

DJ Kirkby’s double book launch of her new book 'From Zaftig to Aspie' and her partner Christopher King’s new book ‘Motorbikes, ducks and crispy sweet apples’. It was a wonderful evening listening to readings, drinking complementary peach champagne, meeting other bloggers and listening to a live jazz band.

But for me the high light of the evening (which all came about by chance) was seeing Daren Callow performing the rap that I had written (my very first blog post). It was quite overwhelming to hear my words come to life. I hope you enjoy it - if you do you can find details on Daren’s blog here or website of how you can buy it. Any money made is to go to charity.

Watch it here

Yes thats me signing copies! If you would like to win one let me know and i will put your names in a hat.

Other news. This may not come as a surprise to some. I have decided to take C out of his group home. It is not what I want for him and no amount of talking to them has changed anything. Of course this is not straight forward (hence I have been quiet). And after a very near miss in my local shopping centre last week when part of the ceiling collapsed onto the table and chairs my friend and I had been sitting at only moments before. (We had moved to a table nearer to where C was stimming as he feet watched.) It has made me even more determined not to waste time. C needs to be somewhere I have confidence in.

Valuing people now: a new three-year strategy for people with learning disabilities is now out and highlights all the things i have been saying to Cs home.
I will keep you posted.

Some of you may have seen on my Faces of Autism blog that I have at last added C along with my 3 year old nephew. I’m finding it very difficult not to overload my sister with info! But it is really good to hear the vast difference in attitudes of professionals and services that are around compared to when C was diagnosed. However there is still room for improvement!

Like this new advertising campaign. It certainly doesn't help new parents like my sister or autistic people themselves. Sharon over at The Voyage (and others) are asking for support to get this ad cancelled. The new campaign by Action for Children TV advertisement portrays autism as a monster to be defeated, a monster with the nice well behaved boy trapped inside. Please pop over to Sharon’s to see what you can do to help.

I have also made an appointment to see my MP about the Autism Bill to try and urge him to support this bill. You can email your support here.

And as they say "That's a rap!"

Night to remember

2008-12-20T08:37:00.002Z

The music throbbed.
The lights flashed
The dance floor was heaving.
I scanned the room and then I saw him.
The most handsome man there.
Our eyes met only briefly but his radiant smile remained as I walked towards him.

I danced his dance.

We stimmed we rocked.

I squeaked with his squeaks.
He held my hand HE HELD MY HAND!!!
I felt we were the only two people there. Worries forgotten as we lived in the moment.

I felt connected.

The evening was then cut short as Cs staff had to take him back (end of shift). But it was a magical night, Cs night club debut, one I will remember for a long time.

No fingers in ears!!

Cs first taste of alcohol!

Did i mention he held my hand!!!

He was fasinated by the smoke!

Merry Christmas Everyone!

Wasn't prepared

2008-12-12T09:00:00.002Z

I wasn’t prepared for C growing up so fast!!

C has been in his group home 5 months now.
I wasn’t prepared for the adult world being so different to school. We try and prepare our kids with transitions but no one prepares the parents.

I wasn’t prepared for the nightmare sorting C’s benefits out. I should have known better!.

I wasn’t prepared for the number of socks they loose! Guess what C needs for xmas!

I wasn’t prepared that since C’s move he would loose nearly 8lbs in weight. And as you know he cant afford to loose weight.

I wasnt prepared for the first 3 months they didn't take C out. That's why i did the post about When labels dont help.

I wasn’t prepared that as C wont let anyone near him to cut his nails (some are now ingrown) or brush his teeth that he now has gum disease and will mean he will have to be knocked out. This why i did the post about stress and pain.

I wasn't prepared to receive in the post a 'Service User End of Life Policy statement' - (they had prepared me that i would receive a letter about staff Christmas holiday rotas) it was very gruelling reading., about how they would lay his body out and dispose of his possessions.

I am used to seeing psychologists pretty charts of Cs head banging with usually little or no explanations or actions.

But I wasn’t prepared at Cs latest review to see this chart of the frequency. Their intervention plan said ‘may prove challenging’. Very helpful.! But it dose explain why they are unable to clean his teeth and cut his nails and not take him out etc etc . But they didn't tell me all this. Did they really think because C does not speak or sign - I wouldn't notice these things? Also interesting the only part of the graph they showed me was where there was a dip.

Maybe I should have for seen all this as I knew C would find the move hard but I hadn’t realised what it would mean to his health. To be fair to them I think all this would have happened anywhere C had gone.

I do think C is now over the hardest part for him. He is now a bit more trusting of a couple of the staff and i now have a couple of allies to tell me things. So there is at last a glimmer of light at the end of the tunnel.

The other week when C was home I was buying a train ticket for us both - turned round and he was gone. As in a puff of smoke - but there was no smoke!! And no I wasn’t prepared for that! Even though I have lost C a few times in the past - its been a while! I scanned the ticket office, I scanned outside my mind going into over drive as all the stories I had read on Autism Vox and F.R.I.D.A. flashed through my brain. I ran over to the man on the ticket barrier and asked if he had seen my son ‘oh yes I let him through’ I dashed past rounded the corner and found C waiting looking very distressed. Phew!
On the way back I asked the man on the barrier why he had let C through - he told me C was following someone who looked liked me but with longer hair!

I had my hair cut during the week.

Mobile phone filming

2008-11-27T17:00:00.004Z

C just loves to watch peoples feet as they pass by - he can get very excited much to the shock/horror and amusement of those passing. Their jaws drop to the floor, some stand rooted to the spot as they try and understand what they are seeing. Some trip as they aren’t looking where they are going. And of course you get a range of comments made.
To be fair many people do not even notice him and some are very friendly and come over for a chat.
C does this everywhere we go. He has a favourite spot in our local shopping centre near the base of an escalator, there is also a cafe where my friend and I catch up over a latte keeping our eyes peeled for any potential trouble, whilst C is in his sensory heaven.

The security guards know us well (as we have been doing this for about 10 years now) and keep an eye on C as in the past there have been the odd incident of small gangs of kids surrounding C. I have become hardened to the comments and the stares but its teenagers filming C on their mobiles that I cannot ignore. And this seems to be happening more often. C seems totally oblivious to it all!But as C is so happy watching feet - he’s not in anyone’s way and keeps himself to him self I am not going to stop him doing this. So what can I do? Any ideas?
My friend and I have found if we pretend to film the filmers they soon stop. Last week I actually took a photo of 2 lads thinking I will put it on my blog. But of course that would make me as bad as them - so I haven’t.

I did email my local police to ask if it was illegal to take photos of someone without their consent. And apparently its not!!

"It is not illegal to film or take photos of anyone although if the group of youths are the same group who continue to film your son this could potentially be harassment which is an offence."

So does this mean different youths taking films is not harassment??! I decided to write to a few other organisations to see if anyone could offer advice. And thought I would share the responses, they weren't very helpful but some of the links may be useful to others who are being harassed.

Mencap said
Thank you for your email. Unfortunately we are not in a position to advise on this situation, however there are a few organisations I would suggest you approach. You could try the Citizens Advice Bureau. You might also find it useful to approach Chilndet, who provide information on Internet safety, or Respond, who offer counselling and advice/support on abuse for people with a learning disability.

I emailed Respond but they haven’t responded!

The NAS suggested i contact Community Legal Advice.

I emailed The Office for disability issues;
For guidance on your son's rights under the Disability Discrimination Act (DDA) you may wish to contact the Equality and Human Rights Commission (EHRC). The commission is an independent organisation which provides advice and information to disabled people and the general public, amongst others, on a range of subjects, including on disabled people's rights under the DDA. website at http://www.equalityhumanrights.com/en/Pages/default.aspx.
The DDA prohibits discrimination in the context of employment, education and transport, and the provision of goods, facilities and services.
The DDA says that harassment occurs where, for a reason which relates to a person’s disability, another person engages in unwanted conduct which has the purpose or effect of violating the disabled person’s dignity, or creating an intimidating, hostile, degrading or humiliating environment for him. A new provision, explicitly outlawing harassment for a reason related to a person’s disability, was introduced in 2004. It does not, however, cover hate crime, general harassment in public places, or specific types of abuse.
However, other legislation may be relevant. The Protection from Harassment Act 1997 provides some protection against harassment and the Criminal Justice Act 2003 places a statutory duty on sentencers to increase sentences for offences aggravated by hostility towards the victim because of his or her disability.
You may also wish to have a look at the Crown Prosecution Service's policy statement on disability hate crime: http://www.cps.gov.uk/publications/prosecution/disability.html.
You may also wish to note for example (pg. 46) that the Department for Children, Schools and Families has convened a taskforce on "cyberbullying". See also the proposals concerning removing inappropriate content from such sites as YouTube (pps. 32-37).
Yours sincerely,

I emailed the Equality and Human Rights Commission - they just suggested I contact a solicitor.
My Case manager has also flagged C up to the Police Vulnerable Adults Unit, so they are aware of C and what is happening.

There are various Autism awareness alert/information cards that I could hand out but I was thinking of designing my own - what would you write on it?

Since writing this

'Four executives of Google begin trial Tuesday in Milan on criminal charges of defamation and privacy violation in regard to a video posted on Google’s Italian site.'

Hope

2008-11-15T06:51:00.000Z

I was very pleased to hear that the plight of fruit and veg who were discriminated against because they did not comply will soon be over. Maybe there is hope for the rest of us!

Earlier this week I attended the Carers UK summit which was very interesting. There were lively debates and voting on many topics. Phil Hope MP, Minister for Carers gave a great speech. Because he has some first hand experience of caring he knows many of our issues. He is very new in his job so hopefully very enthusiastic. He urged us all to email our MP’s so to keep our views on the political agenda. Carers UK do some excellent campaigning and influence many policy makers. And is free to join.

There was a wall where we could put up our thoughts.

Whilst in London I also took the opportunity to visit Stephen Wiltshire’s gallery. I’ve seen his pictures on TV and on his website, but it was great to see his drawings in person. He is very talented. I treated myself to 3 of his prints (well post cards as couldn’t afford the originals!) Stephen also sent me this photo to my on my Faces of Autism blog which you may have seen.

So a great day in London, but I did miss not having C with me on the packed commuter trains as people give us a wide birth!

Other news:
Id also like to mention my dear friend DJ Kirkby (who I had the great pleasure of meeting a few weeks ago). DJ was diagnosed Asperger earlier this year (by the same person who diagnosed C!) and has written a book which comes on sale soon - so a great idea for a Christmas present! Tickets are on sale for what sounds like an exciting book launch. I am hoping to travel down with the beautiful Halo - your welcome to join us!

And Kev at LeftbrainRightBrain has launched a new website called Autism Myths - its worth checking out.

Stress

2008-11-05T07:53:00.002Z

Today is National Stress Awareness Day.

Thinking over C’s life I have been most stressed when C is in pain either through self injury or when he has been ill and it has been difficult to diagnose as he wont let anyone near him, so sometimes the illness gets left untreated for long periods because of his self injury. And then when diagnosed it is difficult to get medication down him! It can be a vicious circle.

We all feel and show pain differently. We all tolerate different amounts of pain. Some of us even like inflicting pain on ourselves.
People look at C and assume because of his head banging he must have a high pain threshold. But when he is in pain he head bangs more. Others see it as this is just what C does. Not that he is trying to tell us something.

So I was very interested to read this summary of a local project that has recently been done.
The project involved talking to people with learning disabilities, residential and day service staff and carers.
The project found that;
14% of day staff,
33% of residential staff
and 66% of family carers
think that people with learning disabilities have a higher pain threshold than people with out learning disabilities.

There is no evidence that people with learning disabilities have a higher pain threshold than other people.

86% of day service staff said that they had taken medication for pain within the last 3 months. Only 4% of people with learning disabilities had been offered medication in the same period of time
79% of residential staff that they had taken medication for pain within the last 3 months.
Only 39% of people with learning disabilities had been offered medication in the same period of time.
We all need to know that;
People with learning disabilities feel pain as badly as other people. People should not have to be in pain.
People with a learning disability may not say they are in pain, but their behaviour might change. (doesn't every ones?!) We need to find out if people with a learning disability are in pain before saying they have "challenging behaviour".
Staff and carers can use pain picture cards with people. However for some like C who is unable to use picture cards so pain signals and treatment should be identified in the person’s Health action plan.

Staff need training in pain recognition and management. Health screening needs to improve.
In July this year there was an Independent inquiry into access to healthcare for people with learning disabilities. The inquiry was ordered in response to Mencap's ‘Death by indifference' report, which told the stories of six people with a learning disability who we believe died unnecessarily while in NHS care.

Did you know GPs are getting £100 bonuses for carrying out health checks on people with learning disabilities. Shouldn't they be doing this anyway?!

So in light of National stress awareness day, Ive had my say - now over to you - so what makes you stressed?

Autism Speaks are here in the UK

2008-10-29T03:58:00.007Z

Bob Wright from Autism speaks US has landed in the UK. For those living here you may have seen them on BBC breakfast time in The Telegraph and The Times.
Autism Speaks attended the inaugural Annual TreeHouse Lecture, entitled “Are we Ambitious Enough about Autism?” and have already met with some of our MPs. Action for Autism has also blogged about their arrival.

So my UK blogger friends - what are your first impressions?
And my US readers - we would love to hear your thoughts!
So - Does Autism Speaks speak for you?

And i am very happy to report that C's home have much improved. Thank you for your support and some excellent suggestions. :)

When labels don’t help

2008-10-13T07:29:00.002+01:00

Every week C‘s home send me a photo.
This one sent a few weeks ago - Cs finger speaks volumes! (even though it was inadvertent)

I haven’t written much about Cs new home as things have not been going to well. I expected settling in problems, but not the ones that C ended up facing.
The home I spent 2 years searching for, the home I felt had the right attitude and would be right for C has totally let both C and I down. I have been gutted. C's last 2 visits home I haven’t wanted to take him back. (Note to self. The Managers of these places do a good PR job but its the hands on staff who do the actual caring, and can be a different story)

As C does not speak or sign all I have had to go on his appearance and body language (which I am very good at). And what the staff tell me - which hasn’t been much.

I was very concerned about what I was seeing. I thought the staff were trying to get away with as little as possible. Neglecting him and not taking care of his basic needs and welfare. But in reality what I found was that staff were taking the line of least resistance/avoidance as they were frightened of him. (Shrek lives up to his name!) Not a good start. (Note to self - trained staff does not necessarily mean confidant staff. )

The labels that preceded C to the home have not helped. Low functioning. Challenging and self injurious behaviour. And of course they would have read all his reports and spoken to staff from his school who would have told them some horror stories.
So they were seeing his labels and not C as a person first. Putting mountains in the way that need not have been there.

But after making some ‘big’ complaints and much talking with the home with the help of my Case Manager I think we have sufficiently kicked them up the back side and things have thankfully started to improve for C.

Many thoughts have been going round my head through all this (especially at night) if this was the best home i found -what must the others be like. And my concerns about what will happen when i am no longer around to keep on top of things have quadrupled. So i need to work harder on encouraging and supporting them (!!) instead of being upset with them. (Note to self. Research back up plan if it doesn't improve enough and i feel i need to take him out)

And I was also shocked and find it hard to believe to be told that I am 'rare' as a parent. That not all the people in C's home (and other homes) have concerned parents who take an interest and want to be involved for a variety of reasons. I find this very sad. But it is also no excuse for them to do their best. (Note to self. Offer to adopt one of the other residents who has no one looking out for them)

I came home to a parcel yesterday a ‘framed’ photo of C in the homes sensory room, laying on a vibrating mat, listening to music and watching a bubble tube, looking happy and relaxed. I took this as an apology from the home and trying to show me that C is ok.
Its going to take a lot more than that to regain any trust. But at least I feel they have got to message, and i appreciate the sentiment.

Actions speak louder than words and they are at last making the right actions.

Time will tell.

I hope my next post will be more cheery!

Happy Birthday C xx

2008-09-24T07:02:00.004+01:00

C is 20 today! I cant quite believe it. Reflecting as I am today the years seem to have flown by. It was my birthday a couple of weeks ago, but my son turning 20 has made me feel old!

‘The road is long with many a winding turn
that leads to who knows where’
This was at the top of the charts the day C was born. As was
‘When I'm feeling blue
all I have to do is take a look at you’.
Both songs are dear to my heart.

And the road has been long, the road has also been beautiful. There have been many steep and rocky parts as well as a few pitfalls. We have met some wonderful people along the way, some of whom have travelled with us. 16 years ago I was struggling with C in a long post office queue and a lady came to our rescue. She has been my rock and best friend ever since.

Looking back many things have become easier (like queuing) as I came to understand C and his ways and our routines became more established. I also learnt to deal with my stress better and C has learnt ways to help himself cope with things. It is very exciting as i feel C has many hidden depths that the world has yet to see.

For Cs birthday treat i took him on the London eye, something i have wanted to do with C for years. But i didn't think he would be able to cope with being encased in a glass capsule 135 metres above London's skyline with no means of escape. Until now.

Not only did C enjoy it but he also seemed fascinated by the whole experience.

To me this shows how far he has come, and anything is possible. I was soo proud of him.

C this is for you. Your favorite song - I Believe In A Thing Called Love. And i do as we travel through this life embracing Neurodiversity.
Happy birthday gorgeous! xx

Liberty Festival 2008

2008-08-31T12:00:00.004+01:00

C is still finding the move to his new home difficult. He has been home for a couple of weekends now which have been great, and has been overly excited! His new home is close enough for me to be able to just take him out for a day, which I did yesterday for the first time. We went to London to see the Liberty Festival. Celebrating the contribution of Deaf and disabled people to London’s culture at Trafalgar Square.

When I picked C up, I did a quick mental check of his appearance (as us mums do!) his hair needs a cut as do his nails, but as yet he is not letting anyone intrude on him that much. I looked at what he was wearing, as its weird what other people dress him in. Tee shirt- good, long shorts- good. He looked great- he looked gorgeous until I scanned down to his feet. Socks AND sandals!! Why do people do this to people with learning disabilities (I also see this in my home town). He’s 19! C should be trendy and fashion conscious!
So the first thing I did on the train was to take them off without getting my ears drums burst from Cs excited squeals.

We arrived in London in glorious sunshine, the first we have seen all summer. Trafalgar square looked great and had a wonderful carnival feel to it, with music, comedy and caberet, performers, stalls, side shows and wafts of cooking smells.

There was a lot to see, my favourite was Barbie imperfecta - The chance to mess with the media’s idea of perfection, if you ever wished Barbie to look more like a real people this is your chance.
I tried to put Barbie’s fingers in her ears but she wasn’t having it! What would you have done?

Do you remember Chip? They used to be on street corners begging for money. Thankfully you don't see them any more. Barbara Lisicki 'freed' several of them and were asking people to give them makeovers!

Cs favourite was feet watching.

At one of the stalls I signed something, turned to walk away when I heard "Casdok -are you Casdok?!" I certainly wasn’t expecting that! And ended up having a lovely chat with 2 very charming young men from the London Autistic Rights Movement, Roderick and Tom.

These balloons then caught my eye as there was a leaflet with a photo of Amanda on it from her Getting the truth out site (which is under construction at the mo) The balloons stood for people trapped in the care system without access to information and communication technology. I couldn't stand and chat to the people from AutreachIT at this display as C had had enough by then.

So hot and weary we went back down on the tubes which C cant get enough of! (Quickly walking past this poster!)
And then headed south back to Cs home. He was not impressed to be going back so soon after a lovely day out. I found it hard to as he didn’t want me to leave. Fighting back the tears I said goodbye and handed over the offending pair of socks.

This Kick Ass blogger award is from Bobbie. Thank you Bobbie.

I'm only supposed to pass it on to 5 other Kick Ass bloggers which is not easy as most parents of Autistic children have to kick ass! So (and i hope Bobbie doesn't mind) i would like to pass this on to you all.

What matters..

2008-08-14T12:44:00.002+01:00

There are many myths and theories surrounding autism.
Autism has been around longer that it has had a name and much longer than many of the theories below were even invented.
Here's a light hearted collection of some of the theories that are around.

Did I shampoo our dog?!
Or was I specially chosen by god?

When pregnant was I stressed?
Or did the devil my son possess.?!

Is C the next stage of evolution?
In the air was there pollution?

Did I conceive in late spring?
Do I remember if it was raining?!

Is C a crystal child waiting to ascend?
Or is he one of the mutant X-Men?

Was it the dental fillings I had?
Or the triple vaccine MMR jab?

Was it my lipstick that was red?!
Or the mobile phone near my head?

Could it be a food allergy?
Or my disordered personality?!

Was it the smoking and drinking which was bad?
Or C having an older dad?

Was I a cold refrigerator mom?
Who always had the TV on?

Or does C have an extreme male brain?
Many things that would explain!

C wasn’t held to ransom,
Nor is he a victim or a madman.

Words hit like a fist - like Retard
Or he’s a brat whom I didn’t spank hard.

It doesn’t matter to me what was the cause
Or the whys and wherefores.

As if you look at my family tree
Its more than plane to see!

What matters is the here and now,
Not the why, not the how.

Autism has made C who he is today -
I wouldn’t have him any other way.

I support C and help him as best I can.
I love him for who he is. C a wonderful young man.

Our reality

2008-07-28T07:32:00.003+01:00

If I had a pound for every time I heard someone say ‘if he were my son I would give him a good spanking’ or ‘if he were mine I wouldn’t take him out in public’ etc etc - I would be a rich woman. Not one day has gone by when I have taken C out that I do not hear at least one derogatory hurtful remark about my beautiful son. So sadly I think Michael Savages’ recent thoughtless comments on autism represents a proportion of societies views about our children.

Wasnt C cute!

And here's C when happy now;

When i see C this happy my heart sings. But others find this large display of pure joy disturbing embarrassing and even frightening. We have emptied countless cafes, shops, or even been asked to leave.

When C was diagnosed all those years ago many friends disappeared as they didn't know what to say or how to relate to C. Some didn't want their child 'catching' autism. Our world shrank as people kept away. Only recently C and i met up with someone we had known many years ago. We had a coffee - she went to the loo -and never came back.

You get used to living on 4 hours sleep, cleaning poo off the ceiling, trying to find something C may eat. You get over wondering what his voice would sound like if he ever spoke. And there will always be another funding battle to fight.

A new way of life emerges and becomes the norm.
Other things take priority, the superficial, artificial and materialistic things are just that, they are things.

C gives me so much more. A smile, a look, a delighted squeak. A licked clean plate (on those rare occasions). A licked clean train carriage window is more often.
Our odyssey has not been easy. There have even times been times when I thought he was going to die. All the comfort I was given by doctors, was ‘wouldn't he be better off dead’.
Society judge him, make fun of him, they film him on their mobiles. C has had dog biscuits thrown at him in the street, and once was even punched by a passer by. Some of my family are embarrassed by him, some say they are scared of him others pity me and give C no second thought.

They don’t see the beautiful being that he is, or the gifts that he shares. They don’t see that C is happy and does have a quality of life. They cant get their heads round it, or rather they don’t want to or even try.
Living with disability can be tough at times, but you get there. It is also full of much love, joy and laughter. And i wouldn't have it any other way.

It’s the prejudice I find the hardest part. The attitudes of some family and friends and some professionals whom we are supposed to trust. And the strangers in the street.

And that is on going. This is our reality. C by the very nature of his autism and challenging behaviour is isolated and in turn isolates me as his mother. This is also true of many other carers in many different situations. There are 6 million of us in the UK. 175,00 are under 18 years old. Carers save the country £87 billion a year!!! (But C and i have just put a dent in that!)

So I have been overwhelmed here in blog land that C and I have touched so many people. Especially as many of you are not parents of autistic children. Everyday there is a new comment or email spurring me on at this difficult and emotional time for both C and I.

And i have been bestowed this beautiful Arte y Pico award by Exmoorjane, Mrs C , The dotterel and Jeff Deutsch. Thank you all so much.

I would like to pass this award on to bloggers (I'm sure you all know the rules) who have also been through transitions.

First Deb who's journey when her daughter went into a group home i followed in floods of tears. And has helped me so much to know she is now settled and happy.

Honeysuckle who's was the first transition blog i found.

Cheri who is now discovering herself after her children left home.

e with her lovely blog who is about to go through a transition has reminded me that all mothers go through this.

KC's blog. The whole family deserve many awards as they support each other through a difficult time.

And Baking a wish, a blog i only recently found is filled with so much love.
And as for C settling in to his new home from home. Progress is slow, and as yet I cant see the light at the end of the tunnel.

But we are on track! :)

C's world

2008-07-14T08:30:00.004+01:00

C's world changes today. Everything and everyone he knows will change. My blond blue eyed little boy of mass destruction has grown into a handsome young man, is leaving school and moving into a home entering the adult university of life.

(You can click on the word cloud to create your own)

It amazes me where all the years have gone. My tiny little bundle of joy now towers over me. I had no clue when he was young what his future would hold. The old mental asylums were still open then, and have now thankfully mostly closed. Even our local day centre is closing and services are becoming more modernised.

There is a lot more choice now for homes for autistic adults because of The White Paper, Valuing People: A New Strategy for Learning Disability for the 21st Century. It is the first White Paper on learning disability for thirty years and sets out an 'ambitious and challenging programme of action for improving services.' Its about individual’s wishes, choices, rights and goals. (about time to!!) And I and other parents will hold them to it but it can still be a post-code lottery.
After all we may all end up in some sort of home one day.
Since the White Paper ive seen a mother get a council house for her son and use Direct Payments to fund staff to go in.
I’ve seen a group of parents get together and buy a house for their children who know each other so they can stay together with their peer group.
I’ve seen a house built from scratch to accommodate a persons specific needs.
I’ve seen individual flats, small homes and larger more specialist homes (as I have chosen for C)

There is more choice and I hope these choices continue to grow as autistic people are listened to more, and awareness grows. Care standards are much higher and homes are inspected regularly. The Government have also listened to the NAS and their I Exist campaign. But there is still much to be done and improved upon.

I found this poem written by Wendy Lawson which she gave me permission to use.

Change, change and more change,
Of context, place and time.
Why is it that life's transient stage,
Plays havoc with my mind?
You said,"We'll go to McDonald's"
But this was just a thought.
I was set for hours,

But the plan then came to naught.

My tears and confused frustration,
At plans that do not appear,
Are painful beyond recognition,
And push me deeper into fear.

How can life be so determined?

How can change be so complete?

With continuity there is no end

Security and trust are sweet.

So, who said that change would not hurt me?
Who said my 'being' could not be safe?
Change said,"You need continuity"
In order to find your place.

For change makes all things different, They no longer are the same.
What was it that you really meant?

All I feel is the pain.

It is hard to tell how much C understands. He became more distressed with each visit to the new home (but at least they have seen his head banging and how I handle him) Two staff from school will be staying over night with him tonight.

So as C moves and his anxiety takes over for the next few months, the only control he can exert in his new world are his bodily functions (in and out) and his head banging. I just hope his helmet does its job and he finds peace and trust soon. I hope it doesn't take C to long for him to train his staff! He certainly trained me well!

I don't know when i will see C next, i am being given conflicting advice how long i should leave him before i see him, so i will just play it by ear and go with my gut feelings.

Food for thought

2008-06-28T07:19:00.001+01:00

When I am stressed or anxious I comfort eat, my weaknesses being cheese and pasta. C is the opposite, he wont eat at all, so will go for days without eating. So with Cs impending move we are both anxious and dealing with it in our different ways.

Since the day C was born feeding has been a struggle. He would quite happily or rather unknowingly starve to death.
Its not because he is a ‘picky eater‘. Eating is a complex motor task as well as having many sensory issues, which C (I think) finds all too much at times. He finds using a knife and fork too difficult so prefers to finger feed, when he does eat. Chewing is also a problem. Hunger just does not seem to register. I recently read that his long thin bones are due to his diet, or rather lack of. No surprise there!

C will have fads, if he eats it will be the same thing for a year or so, and then just stops eating it. But this has become shorter, becoming months.. It takes me a good few days of trial and error to find something else he will eat. (I wont go into the amount of food i have to bin.) He has also had fads of eating non food items (Pica)!

I haven't had C tested for food allergies because the range of food that he will eat is so small. He does unsurprisingly have stomach problems, due to his not eating. Its a vicious circle.

C is painfully thin, just laying in a bath will bruise his back as his bones stick out. I’m just amazed how he has grown to over 6 foot or has the energy to stim in the way that he does, on such a meagre diet with hardly any variety.

So i don't have any tips to share about helping your child to eat, i think i have tried most things. But would love to hear yours if you have any!

I found this fascinating post and comments over at NTs are weird, which if your child has eating issues I think is an interesting read.

Do you have any food fads?

Parenting skills

2008-06-11T06:41:00.003+01:00

As you know C will soon be moving into a full time home. One of the things this means for me is that I will have to give up the part time work that i do and love and find a flexible (so I can still have C home) full time job.
According to a survey a mothers job description would mean she could earn £30,000 pa (and the rest!) Parents develop many skills and as an autistic parent you develop more specialist skills and find sides of your self you never even knew existed.

I found this example of a resume for a housewife. However under 'experience' I think mine would read more like this;

Expert poo cleaner
Problem solving
Creative
Negotiator
Diplomat
Child development
Psychologist
Psychiatrist
Anger management
Stress management
Law
Human resources
Advocate
Campaigner
Mind reader
Therapist
Dr
Specialist chef
Researcher
Can read body language
Sign language
Good at following routines
Patience of a saint!
Thomas the tank engine expert
Can work under stress and on very little sleep.

With my love of all things Star Trek I quite liked the sound of this! Would you give me a reference?!
What would be on your CV and what would be your fantasy job?

Visits to new home

2008-05-29T15:02:00.000+01:00

Putting C in situations where i know he will self injure is something i have spent his life trying to avoid or find inventive ways round. But there are some things like washing and leaving school you cant avoid.

Transitions are stressful! And that’s just me! I cant begin to imagine what it must be like for C. I have now taken C to his new home twice. The first time he was extremely anxious (I was glad of his helmet) and the second time he found very distressing. He was very bewildered and confused and upset. Some old behaviours have reappeared.

Here’s C acclimatising to his new room/ looking for ways to escape.

I hadn’t been back since applying for the funding. So I was very relieved that I still felt C will benefit from the move when he has settled. The facilities are more than i could have hoped for but much more importantly the attitude of the staff is positive, open and up to date. They have their own psychology team as well as art, music and speech therapists so C will have access to these if he wants them. As he is now an ‘adult’ it is all his choice (in theory!)
To keep myself busy and positive I have been making things for his new room. C loves watching reflective light and will loose himself in these CD pics.

And I have been rug making, they make great wall hangings as well as softening the blows his head takes.

To answer some of your questions
Mima - 6 weeks to go! Which isnt nearly as long as it should be or i would have liked.

Niksmom - a lot lot closer only 40 mins away :)

Chaininmagic - Thankfully everyone is taking Cs head banging very seriously. But yes I still am a nervous wreck!

Honeysuckle said and I couldn’t agree more ‘isn't it sad that young people without someone able to fight their corner will end up without any help?’
I looked at 42 homes over 2 years. I was very fortunate to be able to do this and then go through the funding process.

Menopausaloldbag - Yes it is a full time place (but he will still come home). How do I feel? A range of emotions. Excited for Cs future, hopeful that i have found the right place for him. Petrified about his head banging, especially in the short term. Upset that some people feel I am now at the end of my parenting and can now get a life, or whats the point of so much resources being put into a young man with Cs level of disability, and other such remarks. Plus all the other feelings a mother has when a child leaves school and goes into the world (times 100!)

Stinking Billy - Thank you!

Update

2008-05-12T06:27:00.000+01:00

Thank you for all your comments and emails.
So what have I been up to apart from having time to clean my house and grow a few more grey hairs?
A couple of weeks ago after a particularly bad head banging session C ended up in hospital again. But I was able to use this to speed up the final funding decision for his new adult placement, as it clearly showed that someone with Cs level of self injurious behaviour needs a long and clear transition plan, and time had been running out.
We had been left hanging whilst the powers that be had xmas holidays, moved office and tried to pass the funding to other departments etc. It had even gone to their solicitors, only to find they couldn’t get out of it.

So we got the full funding for the package that C needs for his transition and adult place.
A big relief.

Last week we had a meeting with everyone involved with C plus staff from the new place. I was a bit of a nervous wreck the few days leading up to the meeting.

But I was very relieved and somewhat surprised that for once people were being honest and taking the severity of C behaviour so seriously (usually its swept under the carpet as they don’t want to be seen as not coping) .
So I came away with a moving date and a very detailed transition plan that I felt happy with even though still very apprehensive. And the new home has a place available for him.

I will be taking C for his first of many visits in a few weeks to his ‘adult’ home. I will let you know how it goes!

Time out

2008-04-11T06:39:00.004+01:00

I'm going to take a break from blogging (maybe i will just do the odd post here and there?) as i have to focus on Cs future ( he is leaving school soon) and my sanity ( funding battle)
So i would like to take this opportunity to thank you all for your support and kind words over the last 8 months. I'm sure i will pop in on you from time to time.

For me my post yesterday sums it up, as parents we need to listen to autistic people (you will find many wonderful bloggers at the Autism Hub)
So heres one last message from C;

I don’t want to be treated like a child.
I want respect.
I don’t want to be ‘trained’.
I want the opportunity to grow.
I don’t want to fester in a local day service, or in a home.
I want to be an active member of the community.
I don’t want pity or patronizing.
I want to be valued.
I don’t want neglect or abuse.
I want to feel safe.
I don’t want lack of resources to be an excuse.
I want a creative approach.
I don’t want institutionalised staff.
I want people who really care.
I don’t want people being complacent about my behaviour.
I want to be nurtured.
I don’t want special services.
I want opportunity.
I don’t want to ‘fit’ into existing services.
I want choice.
I don’t want to miss out because of risk assessment.
I want some fun.
I don’t want to be cured.
I want acceptance.
I don’t want charity.
I want integrity and dignity.
I don’t want to be disabled by society.

I just want what everyone else has.

Out with the old.....

2008-04-09T08:01:00.001+01:00

The puzzle piece logo was first introduced by the British National Autistic Society in 1963, it depicted a sad child who did not fit.

We have come along way since then and know a lot more about autism, social representations change over time. Autistic people do fit in society, so the NAS updated their logo. People with autism and parents are always challenging the way autism is portrayed. There is so much negative press, an image of a puzzle, with a piece missing, simply does nothing to raise positive awareness with the general public.

“The usage of the infinity symbol as a representation of autism, started by Aspies For Freedom in June 2004, was a reaction to the negative connotations associated with the jigsaw symbol commonly used by parents to represent autism. The jigsaw symbol is seen by much of the autistic community as an insulting reference to the fact that autistics can appear puzzling, in need of "fitting in" with society, or as having "a bit missing". It was felt that the infinity symbol better represents autistics by representing logic, persistence, perseverance, and unity of form.”

“Autistics. Org has responded to us parents by selling a button that reads, "I am not a puzzle, I am a person." In addition, Oddizms has created a rainbow moebius ring with the statement: "Many autism spectrum adults object to being objectified by the puzzle ribbon ... They want a different symbol and here is my offering"I feel as parents we should listen to autistic people themselves. As the National autistic societies have updated their logos and their thinking - so should we parents. And if you haven't seen it yet - you must watch Bevs video.

Lastcrazyhorn has some beautiful art work as an alternative to the jigsaw.

Joeymom has also been busy!

Films related to Autism

2008-04-08T06:47:00.048+01:00

Even if you don't know very much about autism I'm sure you will have seen or heard of a few of these.
Please let me know the ones i have missed.

1962 - To kill a Mockingbird
1963 - A child is waiting
1969 - Change of Habit,
           Run Wild Run Free
1972 - A day in the death of Joe Egg,
           Brother Carl
1974 - Silence
1977 - A Circle of Children,
           Cube
1978 - Lovey: A Circle of Children Part 2,
1979 - Being There,
            Son-Rise: A Miracle of Love,
1980 - Touched by Love,
1981 - The Pit
1986 - The Boy Who Could Fly,
            Childs Cry
1988 - Rain Man
1989 - The Wizard
1990 - Backstreet Dreams
           When you remember me
1991 - Little Man Tate
1993 - Family Pictures,
           What's Eating Gilbert Grape?
           House of Cards
           AuPair
           When the Bough Breaks
           Thirty Two short films about Glenn Gould1994 - Silent Fall
           Nell
           Forrest Gump
           David's Mother
           The Innocent
1994 - Relative Fear
           Touch of Truth
1995 - Under the Piano
           Silence of Adultery
1996 - The Boys Next door
           George
1997 - Journey of the Heart
           Mimic
           Possum
           Cube
1998 - I Am Sam
           Mercury Rising
           Down in the Delta
           Spoonface Steinberg
           Little Voice
           When the Bough Breaks II
           Perfect Prey
           Nightworld: Lost Souls
1999 - Molly
           The Other Sister
2000 - Dancer in the dark
2004 - Miracle Run
           Killer Diller
2005 - Mozart and the whale
           Magnificant 7
2006 - Snow Cake
2007 - Her Name is Sabine
           BenX
           Yellow Brick Road
2008 - The Black Balloon
            Autism: The Musical
            Tropic Thunder (A nationwide boycott of this film is being called because of the movie’s open ridicule of people with learning disabilities.)
            : Just Add Water
             Treasure Diversity
             If you could say it in words
             Chocolate
2009 - Adam
           Mary and Max
           City Rats
           Nobody Nowhere Donna Williams In development
            The horse boy
2010 - My name is Khan
            Dear John
            Temple Grandin
            A Mothers courage
           Ocean Heaven
           Wretches & Jabberers

Dad's in Heaven with Nixon

Quantum Apocalypse

2011   Loving Lampposts
2012   White Frog
           Extremely Loud and Incredibly Close

Brain Art

2008-04-07T06:47:00.001+01:00

William James "The greatest discovery of my generation is that man can alter his life simply by altering his attitude of mind."

Which picture do you think represents your brain best?

What's in my bag?

2008-04-06T06:36:00.000+01:00

Motherhood for Dummies asked me what was in my hand bag.

Not that long ago i used to have what seemed like a Tardis for a bag. Being the mother of an autistic child you have to be prepared for the more unusual eventualities.

As you know C doesn't speak, but he also doesn't ask for anything like needing to go to the loo. I have to promt him, and of course i don't always get my timing right. So i used to have to carry spare clothes. (My timing is better now) Incredibly sometimes he wont go to the loo for days at a time, no matter how much i give him to drink.

Yes i used to carry a swimming float. Any ideas as to why? Its light, portable and great for slipping in between Cs head and the surface he was headbanging on. (When small i would use my hand or foot, or bodily lift him away.) Now he wears a helmet.

Pecs.....ooops wrong pic

Pecs, i carried Pec symbols about for years, just in case he would start using them.

And to some places i would take a portable DVD player.

And of course a supply of chopsticks!

Before the days of C having his fingers permanently in his ears he would never been seen without a chopstick which he would tap on his face, but occasionally they would fly off never to be seen again.

Those days are behind me now and thankfully my bag has now shrunk. It also had to shrink because of my injury to my leg i can no longer carry heavy things.

So now i just carry the necessities, our disabled bus and train pass, a carers card in case something happens to me. (I used to have an Alert card - but never used it) A Radar key - for public disabled toilets. Phone. Wet wipes for tomato Ketchup emergencies (he prefers to eat with his fingers) and he also will on occasion smear when out, but we wont go into that! Sudoku book and pen, notepad in case i have a blog brainwave - and a crystal. And for some reason i still have a chopstick in there!

What unusual things do you carry in your bag?

Actions speak ...

2008-04-04T07:14:00.001+01:00

Louder than words.

Do you ever find yourself trying to speak but the words don't come out? Or they do but its not what you wanted to say? You might be nervous or anxious or shy. Do you find it difficult to get your point across so that people understand? Sometimes writing a letter is easier as you can express yourself better.
Talking is not always straight easy!

My son doesn't speak. I don’t know if C cant or if he has chosen not to. I don’t know if it is an anxiety thing or if its too painful or difficult. He has also refuses to use PECs or signing, or any other assisted communications technology. As C has got older and i understand his autism better i respect these choices, but I will always offer him options as they arise. Such as FC. (You may have heard of Carly)

When C was younger I used to long to hear him speak. I thought speech and language were important. If I am honest I wanted to hear him say ‘mum’ or ‘I love you’ just once. But as he grew without words, i began i realise that he didn't need a voice to say these things as he said them in many other ways.

C learnt at a very early age that head banging was a effective way of communication. So effective that he still uses it, but now it is a last resort.
C is by no means mute, when he is happy his high pitched squeals are ear piercing. And a delight! (the general public may think differently on this one!)

C is very physical in that he rocks, flaps, flicks, paces, jumps, slaps himself all the time. C is reacting to his surroundings. He is communicating.

Amanda Baggs puts it like this
"My language is not about designing words or even visual symbols for people to interpret. It is about being in a constant conversation with every aspect of my environment, reacting physically to all parts of my surroundings.
Far from being purposeless, the way that I move is an ongoing response to what is around me….The way I naturally think and respond to things looks and feels so different from standard concepts or even visualization that some people do not consider it thought at all. But it is a way of thinking in its own right."

Words are only 7% of your communication.

Tone of voice is 38% and the other 55% of our communication is body language.

C uses 100% body language!

What have all these people got in common?

2008-04-03T18:32:00.004+01:00

They are all possibly on the autistic spectrum. For a more complete list, have a look here.

Many of them have helped shape our world today. Our children will help shape our world tomorrow.

World Autism Day

2008-04-02T07:02:00.000+01:00

For me this stands for the same as world peace. (I don’t want much do I!?!) Peace has to start with understanding, tolerance and acceptance of others.
An understanding we are all different, we all have quirks, we all have different needs and we all want to be accepted.
So my wish for world autism day is that people be more patient and understanding of each other.

I think C would wish us to view his autism as a different ability rather than a disability. He is a person first.

What would your wish be?

I saw this over at Whose Planet Is It Anyway?

'I could tell you so much more, but instead let me share one last insight. Don't pity me or try to cure or change me. If you could live in my head for just one day, you might weep at how much beauty I perceive in the world with my exquisite senses. I would not trade one small bit of that beauty, as overwhelming and powerful as it can be, for "normalcy.'

For more see here.

Let us not forget

2008-04-01T07:04:00.001+01:00

Tomorrow is World Autism Day.

Let us not forget the real reason behind the first World Autism Day declared by the United Nations General Assembly, to raise awareness to the world, but especially the third world countries.

In modern society we take so much for granted. Life for C and I would be so different without what we call the basics such as a DVD player and Thomas the Tank Engine. Washing machines, microwaves, supermarkets. I don’t even give a second thought to what to some is a luxury like having water on tap, or light at the flick of a switch.

And no Internet! Doesn't bear thinking about!!

And the many battles I have fought, for what I have felt are Cs basic human rights.

How fortunate are we that these services are here for me to fight for. Many families in the third world do not even have basic education or health care, let alone special ed provision and speech therapy etc.
These thoughts are very humberling. For all of us.