Mother of Shrek

Being complacent

2009-11-20T15:30:00.005Z

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

2009-10-20T10:57:00.007+01:00

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!

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..

2008-08-14T12:44:00.001+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.

I would like to say a BIG thank you to Elizabethd, Okasaneka, and Nancie This award was created by Crystal inspired by her son.

I would like to pass this onto 2 special young ladies who's blogs never fail to make me smile. Maizie and Amy.

And a big thank also to CrackerLilo, Lane, and Kit Courteney, for this award.

I would like to pass this one onto 3 very fine young men. G, Elf and Emperor for their entertaining blogs!

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.