Health matters

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

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

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

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 hope they don’t realise it’s me or be honest with them??

And no C hasn’t said anything else :(

C Spoke!!

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....

"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

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.