Being complacent

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

For me what has been the toughest - C’s Autism or his severe learning disability? Neither it’s his challenging behaviour 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!

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

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

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

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

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...

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.