Looking back, keep moving forward.

Saturday was miserable, rain, rain, and more rain. I decided to go into our loft and have a sort out, just the kind of job to be saved for a rainy day.

I found many things I had forgotten that we had, many of which should have been thrown away without actually ever making their way to the loft.

Anyway I started sorting, charity shop and bin.

I came across a file which was full of information about Zach going back to when he was first diagnosed with autism at 2 years 8 months.

I decided it was time to clear some of this stuff out, we just don’t need it anymore. I was looking through to make sure that I didn’t throw away anything which we may want to refer back to. What I read made memories come rushing back of some really difficult times, things which I knew were being done to my son and was powerless to stop.

Zach’s first school was a local Severe Learning Disability school. It was the choice! The only school available.

The nursery at this school was such a loving, nurturing environment, the staff were so professional and keen to help the children.

Things quickly changed when Zach left the nursery. We were investing a lot of money in PECS ‘Picture Exchange Communication System’ to help Zach to communicate. He was very quick to pick it up and extremely capable.

School didn’t seem to be using it with the exception of snack time, imagine if the only communication efforts you could make were to ask for food and drink. It is tokenistic at best.

Despite me working hard to have a good relationship with school I was frustrated that more was not being done.

Zach spent some time in the autism base where he seemed to be happy but when he left the base things very quickly went down hill at an amazingly fast speed.

We limped along, I looked at other schools, I wanted Zach to enjoy school and to learn, I didn’t feel that was happening. He would melt down almost every evening when he arrived home having been trying to hold it together all day.

I approached education about him moving school but was told the school were meeting his statemented needs, I didn’t feel they were.

I wished I hadn’t read some of this stuff on Saturday, the memories are some which I did not wish to revisit, but at the same time having watched the recent Panorama programme about the systemic abuse at Whorlton Hall in Durham it is so easy to see how those who have autism and complex needs end up being sectioned and sentenced to a life of frustration, anger and disappointment.

The document I found which hit me hardest was a report which was written following Zach coming home with marks and bruises on his torso, front and back and finger bruises on his inner arms. Zach was 10 years old then, he was a tiny boy at 10. The report made me feel heartbroken and intensely angry at the same time.

Zach’s crimes that day included trying to take instruments from a box in the music lesson, he was told to sit down, he did that for 30 minutes! That is a very long time for Zach and he then got up and returned to the instruments. After sitting for 30 minutes Zach deserved a massive reward, but no he was repeatedly told to sit down again and then someone held his school shirt to keep him on the chair. Staff seemed surprised that Zach’s reaction was that he began to aggress to staff. He had done what he was asked to do but that wasn’t enough, there was no positive reinforcement, no verbal praise just an expectation that he would continue to comply with no reward.

He was then restrained.

The day continued in a similar vein, reading it is hard, knowing that my boy was reaching out to staff at the school, trying to build relationships and all his efforts were rebuffed.

The day was full of sitting, assembly, music, then an achievement assembly. He was restrained again in achievement assembly after becoming unsettled. Allowed out into the playground where he wanted to take his school shirt off, he was repeatedly told he must wear his shirt, then allowed to take it off for 10 seconds and was then told to put it back on! All these mixed messages would confuse most people, imagine trying to comply when the message is so unclear.

He was then taken back into assembly and tried to take his shirt off again, was taken out again, then back in, then back out!

When the car crash of a day was at it’s end Zach was led to the transport by two staff who were restraining him.

At the end of the report it says that his mood had not been good all day….which was surely no surprise to anyone.

I still remember that day, he was happy to be home and went outside to the trampoline. It was a boiling hot day and he took his shirt off and I saw his little body marked and bruised and couldn’t quite believe what I was seeing.

We should have called the police, it should have gone straight to safe guarding but I phoned the school and was told by the Headteacher that Zach had, had a very difficult day….she was telling me.

The incident was heard at a County Council pre-safeguarding hearing. The Head Teacher was invited to explain, she apparently claimed all the injuries were inline with what you would expect when using that method of restraint. They accepted this despite it being totally inaccurate. Neither Zach or I were invited.

The next morning the transport arrived and I opened the door to take Zach down to it and he shot off as fast as he could, running up the road away from the school bus. I kept him at home, I just couldn’t bear to put him through another day at that school.

Zach did go back to school after this incident but not for long, we were fortunately near the end of term and in September the Head temporarily excluded him very shortly after his return, she eventually permanently excluded him, much to my relief.

I am probably a nightmare parent, I will fight for my son to receive the correct support, in the best environment possible. I will aim high for him to live a happy life where he is treated with respect and given the dignity we all deserve.

I knew that the way the school had excluded Zach was unlawful, I knew that they hadn’t been complying with his statement and I knew that they hadn’t followed correct procedures to try to help Zach within the school.

There were autism experts available to give the school guidance but the school would not reach out to those experts. The school was using Teaching Assistants as teachers, young people straight out of University. The school just didn’t understand autism and complex needs or that functional assessments and positive rewards are needed.

The school had a battle of wills going on with a 10 year old boy, they wanted to control Zach and he didn’t want them to. They took away his only method of communication, his PECS book because they said he was using it to gain control!

Can you imagine having your voice taken away as there was a danger you might ask for what you wanted?

Zach did not learn anything positive at that school, the wonderful work the Nursery team put in was quickly forgotten. What Zach learnt were great avoidance techniques, how to get out of doing something he didn’t want to do.

The school sent so many mixed messages it must have been hard to understand what it was that he was actually meant to be doing.

We appealed against the exclusion, which went before an independent panel. The panel found the exclusion unlawful, they found the school had failed Zach in many areas while he attended. We asked that he was not reinstated even if the extra support was put in place.

Since Zach’s exclusion in 2008 a number of other young people have been excluded from the same school, all have autism and complex needs. The school clearly learned nothing from failing Zach, all these young people deserved to be listened to, to be allowed to communicate and grow and learn.

I suppose I felt the need to write this post after watching the panorama programme as the behaviour of the staff at this school was inflammatory to Zach. The school totally and utterly refused to believe that they were in anyway implicated in the way in which Zach behaved.

I have kept these records, they are a reminder of why we fight with everything we have to make sure that Zach is continuing to learn, to live a good and happy life and allowed to express himself.

Positive Behaviour Support is teaching Zach better ways to communicate his likes and dislikes and to give him choice. Zach’s team fully recognise that he is intelligent and needs to continue to learn and acquire new skills as we all do, we just need to be given the right opportunities to allow that to happen.

 

 

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Change needs to come, now!

It seems an age since I added anything to my blog, there are many reason’s for that and  the main reason is that I never seem to get to sit down for long enough to have the time.

Anyway I am grabbing an hour or so right now, before it goes missing!

It doesn’t seem long ago that we were all aghast and disgusted by the treatment of vulnerable adults who have learning disabilities and autism at Winterbourne View and this week we saw that, despite the government saying things would change, it is clear that there is still a long way to go.

The Panorama program on Wednesday evening showed Whorlton Hall in Durham. People who had been sectioned, put in this secure unit supposedly for their benefit were being repeatedly abused both physically, verbally and emotionally by Care and Nursing staff.

It was a tough watch for anyone, the vile employees who seemed to get a kick out of exerting power over those who could do nothing about it and could probably not reiterate it to their family and those in a position to do anything about it, was so shocking. Some of the staff, in-fact all the staff in the documentary showed no regard for those in their cares dignity, feelings or did anything which may help their circumstances to improve.

These units are meant to be for those in crisis not for people to live in for years and months but they do, I am guessing part of the reason for that is that their psychiatrist and treatment team see little improvement which is hardly surprising.

It would be very interesting to see the application forms of those staff shown in the documentary, what experience they were bringing to the job. It was highlighted that many of the staff were agency, although some agency staff are very good there is a lack of consistency which is vital to those who have autism and LD (learning disabilities) and you never actually know how good agency staff are until they arrive. Often they are dead wood, floating around just making up the numbers. In that sort of environment this is worth nothing.

I would never suggest that working with people who have challenging behaviour and autism is an easy job, it takes an incredibly special sort of person who can go back to work smiling and positive day after day when progress can be scarce and slow, aggression towards them is high and the hours are long and anti social.

These special people need paying for the work they are doing, they need to receive a salary which recognises the difficulty and responsibility of their job, there needs to be recognition of them doing a job that very few can do well and stick with.

If you put someone in a job like this who does not have the tools which they need to make a difference the outcomes should be obvious, Panorama showed this and some. Not only were the people clearly not able to apply tools which had been developed to de-escalate and calm people they were clearly doing whatever they could to cause distress and high intensity escalations. These people were not fit to work in a job which had contact with any other living being let alone the most vulnerable people.

Something which I find equally disturbing is that there must have been staff at the hospital who were trying to do a good job and probably cared very much about the patients but they must have been aware of the abuse and emotional torture which the patients were being put through which makes them complicit in my opinion. 

Last year Hertfordshire held a Conference which was informing providers and those working with people who have autism and associated disabilities about Positive Behaviour Support.

The overall aim of Positive Behaviour Support (PBS) is to improve the quality of a person’s life and that of the people around them. This includes children, young people adults as well as older people.

Positive Behaviour Support provides individualised support for a person, their family and friends to help people lead a meaningful life and learn new skills without unnecessary restrictions.

It helps people to remain in their own homes, communities and close to the people that they love.

Positive Behaviour Support is based on the principles of ABA (applied behaviour analysis). It is as the name suggests a positive intervention, it has fantastic outcomes and it can change the way people live their lives.

Following the program I contacted Zoe and Danny who I worked on the Conference with and asked if we could kickstart the Counties drive with PBS. Our aim is to have a Hertfordshire Positive Behaviour Support Community both for Professionals and for parents and carers.

I got an immediate response and we are meeting next week to make plans.

If we can get the support right for people who have learning disabilities and autism and complex needs there is far less chance of them being sectioned and ending up in a ATU.

Imagine in 2019 people are still being sectioned for having a disability, totally shocking.

There are various petitions going around after Panorama demanding change. If you are someone who signs petitions or someone who thinks they are a waste of time please take a few minutes to go to Change.org and search ‘End the abuse of autistic people & people with a learning disability in inpatient units‘. If you saw the program I am sure you will feel compelled to sign.

Local government need to commission more expert services who have a deep understanding of autism and related learning disabilities. The cost will be greater short term but the gain most importantly will change lives and secondly long term with financially pay off.

The cost of sending people who have done nothing wrong other than have a disability and needs which are not being understood is huge, thousands of pounds a week and that week turns into months which can then turn into years.

A local home which is run by a national charity and should and could be a nice place to live has a constant stream of agency staff who neither seem to be bothered or care about the residents, the outcome of this should be obvious to anyone and everyone.

When asked about this the regional manager said there was a recruitment problem!

Good staff need to be valued, invested in and applauded for the difference they are making, offered career progression and on the job opportunities to further their relevant studies and training.

None of this is rocket science.

Parents will drive themselves to a nervous wreck to keep their children safe, then their adult children safe because there is so much distrust of the quality of care providers.

We need places in local communities for people who have autism and complex needs to live, places which are suitable and well thought out.

We need to ensure that at the same time as working to bring people back from Assessment and Treatment Units there is also work going on to stop people going in the first place.

Failure is not an option for these people because failure can end up looking like Whorlton Hall.

The Government, local authorities, people who work with vulnerable adults all have a massive responsibility. Change needs to come and fast.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The Challenging Behaviour Foundation

I spent most of last week on a training course with the Challenging Behaviour Foundation in Chatham, Kent.

The Foundation was set up by a wonderful parent whose 9 year old son was sent 270 miles to a 52 week a year residential school because those involved in his care and education were struggling.

The new school which Vivien’s son, Daniel was sent to were using what we would now call ‘Positive Behaviour Support’ and it was quickly realised that her 9 year old shouldn’t have to be 270 miles away from his home, this could be done anywhere.

Vivien set up the Challenging Behaviour Foundation in 1997. The purpose of the charity was and remains to be ensuring that people who have similar needs to Daniel and their families can access information and support, in the right place and at the right time.

The Charity started with no resources other than a driven Mother (the best resource!).The Charity has grown and is known across the country for the good work  they do, both advising and training professionals and helping and supporting parents to achieve what is right for their children.

To find out more about The Challenging Behaviour Foundation please go to their website https://www.challengingbehaviour.org.uk/

The training course I was on, was so that I can become a Community Champion for the Challenging Behaviour Foundation in Hertfordshire.

The course was challenging itself, not least because I had to go across the Dartford Bridge and back under the tunnel each day which gave me plenty of time to ponder the stories from other parents and a family trainer which were so horrifying to hear.

The consequences when things go badly wrong for our children are those which will change and impact lives forever.

Why do things go wrong? ‘There is always a reason for behaviour’ Tony Osgood who is a Senior Lecturer in Intellectual Disabilities at Tizzard University told a room of parents when he was delivering a talk at the Partners in Policymaking Course I was lucky enough to attend in 2009.

We heard lots of speakers over the 10 valuable months the course ran, Tony Osgood was one of the speakers that really resonated with me. It was so enlightening to hear somebody talk about positive approaches which could be taken to avert behaviours from becoming challenging and change them into something more acceptable.

Why doesn’t every school, Social Worker, Youth Worker, GP, School Nurse, absolutely everyone who is in a position which may mean they come into contact with a young person or adult who has complex needs and behaviour which challenges have a access to a Behavioural Psychologist they can make referrals to, just imagine the difference it could make to so many lives!

People who have behaviour which challenges adopt those behaviours because a need is not being met, very often that need is communication. Those in a position to help those people can either find ways to meet their needs or ignore the behaviour until there comes a point when they can no longer ignore it as people are being hurt, put in danger and then things start to go horribly wrong.

There is no shame in asking for help! There is no shame in admitting that a situation you find yourself and your child in is just not safe anymore.

There is shame however in Professionals not asking for help, for professionals to do what they have always done, which will sadly mean they get what they always got (and so did the children and families they were meant to be supporting).

There is shame for services so closely guarding their budget that they are not providing the correct support that some of our children need. I totally accept that services are facing cuts year on year and that is tough, the problem is that things will never get better unless services look forward. Something which may cost them a lot of money in the coming years may save them thousands in the long term. And putting the financial aspect aside will massively change peoples lives, which is after all the most important and valid argument anyone could have.

The Challenging Behaviour Foundation offers a wide and varied selection of resources which can be found on their website. They also offer training for parents and professionals. There is a newsletter and parents can also email questions which other parents can answer to help solve problems. They have family support workers who work with families and offer good advice.

I am now a fully trained Challenging Behaviour Foundation Champion, I am proud to fly their flag! I will be going to local events to let people know who are in a similar situation to us that there is an organisation which will help them and signpost them to the wonderful staff at the CBF.

The Challenging Behaviour Foundation have been shortlisted for funding from the National lottery’s ‘People’s Projects’. If you have a few minutes please vote for them, they stand to get a £50,000 grant which will help them deliver vital training to families.

Please find information below and vote, vote, vote!

Our project Learning Disabilities – Supporting Families has been shortlisted for funding from National Lottery’s the People’s Projects.

If we got this funding we would run challenging behaviour workshops for families throughout the Meridian East region. The workshops have already been delivered to many families, who have told us how helpful they were. Now we want to reach more families who we know are struggling or in crisis.

Our workshops will give around 500 of families the skills and knowledge to understand the reasons for the behaviour, and how to prevent it or respond to it safely.  They really do make a long term change to the person and their whole family’s lives.

Please vote for Learning Disabilities – Supporting Families now, to make a difference to families’ lives.

Voting is open from 1st April until 15th April. You can vote from anywhere in the country and you can vote in more than one region, but you can only vote for one project per region.

 

 

 

A very late, Happy 2019!

We seem to be racing through the new year! I meant to write a post wishing everyone a Happy New Year and thanking you all for your support in 2018! Is it too late to do that now?…..it’s never too late!

Thanks so much to everyone who supported us during 2018, it is down to all you lovely people that Zach is able make a contribution to the working world. The Spectrum of Misconception got off to a flying start with the wonderful Christmas cards that the very talented Laura Dixon illustrated for us. We sold lots more that we expected and although we had issues with things taking longer than expected and some of the packaging we had purchased not being very strong our customers were happy with the product.

We are learning lessons along the way, we are looking at new packaging and realise that we need to start preparing for Christmas in the Summer! This year we hope to have a few products available at Christmas time…watch this space!

Just before Christmas Laura told us she needed to concentrate on her course work for her Fine Art degree which is entirely understandable, we were disappointed and the search for a new artist started.

Thanks to everyone who suggested someone who maybe able to help us.

It was a bit of a grey Saturday in early January, John and I had a coffee in Hertford after a bit of shopping, called into the Museum to look at an exhibition and then when walking past Courtyard Arts I saw there was a display of young artists work on there. I had to twist John’s arm a bit but in we went.

We worked our way around the room looking at all the art, it was all good. We came to the last but one display and I knew that the artist of this work was just who we were looking for!

I made sure to get the artists details down by taking 110 photos of her bio and set off for home with my fingers tightly crossed.

I’m not sure whether it was because I crossed my fingers but Lauren was interested in our Enterprise and we planned a meeting.

Lauren is the final year of a Fine Art Foundation Degree. She has loved art from a young age, starting with paint by numbers but using her own paints! Lauren’s main interest is digital art which she uses a tablet for. She is excited about where her art work can take her and we are very excited to have her on our team.

 

We can’t wait for her to get started on new ideas we have for Spectrum of Misconception!

Another good thing has happened, after approximately two long years John and I have been appointed Zach’s Welfare Deputies. This is a complicated process but so necessary for Zach’s ongoing welfare that we have it.

 

A Deputy is someone who is appointed by the Court of Protection to act in the best interests and make decisions of someone who lacks capacity to make decisions themselves.

Welfare Deputies can make decisions regarding care, housing, medical treatment.

Very often people do not apply for Welfare Deputyship until something has gone wrong for the person that they care for.

We have had the expert advice of Belinda Blank an independent advocate at  advocacyandsupport.co.uk email: info@advocacyandsupport.co.uk who signposted us to a top Solicitor in Alex Rook of Irwin Mitchell. In our case our reason for applying for Deputyship is that we cannot afford to let things go wrong for Zach so with this we are his voice and we can ensure that his life reflects what we know will be best for him and make him happy.

There is at present a campaign underway which is trying to get the law changed. A group of parents want to change the law to stop the marginalisation of parents after their children turn 18. They want to end rules under the Mental Capacity Act that see’s parents shut out of key decisions.

The Act says that when someone with learning disabilities reaches the age of 18 the decisions about that persons life are then taken by Social Workers.

Rightly the campaigners want the parents to continue to have the final say on the welfare of the person who they know better than anyone!

To find out more about the campaign follow this link https://www.crowdjustice.com/case/3forall

Belinda Blank runs Seminars for Parents, Carers and Professionals, her next is called Transition to Adult Life and runs on the 27th February in Central London. Cost is £15 which includes Lunch. Please find a link below.

Housing flier Feb 19

 

 

 

 

 

 

 

 

 

A New Years Tale

I hope that everyone enjoyed a Merry Christmas or at least got through it unscathed. For those who have a family member who has autism who does not enjoy all the changes and sensory stimulation Christmas brings with it, it can be a difficult and isolating time.

Everybody else seems to be having fun with family and friends and that is very tough.

We had a blissful run, Christmas Eve, Day and Boxing Day when Zach was happy and calm. He really likes the three of us to be together, relaxed, happy and smiling.

 

Normal service has been resumed though and we are back on the roller-coaster which is autism.

As the New Year approaches we have been asked on numerous occasions what we will be doing on New Years Eve.

Its a good question, a conversation opener unless you are asking someone who has an adult child who has autism and no evening support.

When was the last time John and I went out to celebrate New Years Eve? About 23 years ago! That’s a while, I can’t remember where we went or with who….no doubt we will be doing what we usually do on NYE and that is go to bed at the same time we go on every other day of the year.

I was listening to the radio today while pottering about in the kitchen and ‘Our House’ by Madness came on. I can remember that being in the charts at New Year in 1982.

It got me thinking about that particular NYE at a time when I could go out and party.

My parents often went away at New Year and our house was usually party central. On this particular year we hatched a plan which looking back and possibly even at the time was not a great one!

We went to a tiny little club in Stansted Mountfitchett which had a dance floor that held about 5 people as long as they weren’t dancing energetically!

Stansted Mountfitchett is about 45 minutes from Hertford and we had to try to fit about 25 people into 4 cars which was a squeeze!

The initial plan was to see the New Year in at the club and then go back to our house. It shouldn’t have been a surprise that the club was not exactly buzzing and we left within about an hour of arriving.

Fortunately, or so it seemed at the time there was lots of alcohol at our house, we had music and so we all squashed into the cars again and headed back to Hertford.

And so once again we partied at 97 Ware Road, wkept our poor neighbours awake and all drank far too much. The evening was scattered with laughter and dancing, tears and break ups (as were a frequent occurrence when we were young). Some one started the evening with one boyfriend and finished it with another, there was plenty going on.

Former Wild Child!

We all fell asleep in the early hours of the New Year, bodies in sleeping bags everywhere.

A good friend John, didn’t have a great relationship with alcohol back then and was frequently sick. When we woke up in 1983 we were told that John had been vomiting a good part of the early hours and the toilet in the bathroom was blocked!

Once we were all up and ready to face the day we tried to work out how we would unblock the loo.

John was renowned for fixing things, he always found a way to resolve and get around problems. On one occasion while out on his bike with another friend one of them punctured and when they found that they didn’t have a spare inner tube between them they stuffed the tyre with grass and cycled home 25 miles on it!

John’s plan for our toilet was to run the hose pipe from the outside tap along the length of our landing (which was quite a long way!) and down the toilet, to then turn the tap on at high pressure which was going to unblock the toilet apparently.

So the hose was thrown up into Charlotte’s bedroom window and run through the house and was down the toilet ready to work wonders when someone shouted up the stairs ‘Your Dad and Mum are home’!

‘Course they are’ I shouted back…. ‘they really are’ was the reply!

People began to grab their stuff and head out of the back door while we opened the front door rather slowly!

There was a handy passage down the side of our house which party goers waited in until my parents were safely inside.

I guess you can imagine the reaction, and understandably so! My Dad was very fond of John (hose pipe John) but not especially on that New Years Day.

I couldn’t understand what they were doing coming home to THEIR house on New Years Day! It was all wrong surely, they weren’t meant to be home yet! But due to one of their party being unwell they had come home early and they came home to find a trashed house with a garden hose running through it, that there had been under age drinking and our neighbours were only too happy to inform them of the shenanigans which had gone on into the early hours.

The face of absolute innocence!

The hose was swiftly removed, not having worked and a plumber was called out (on New Year’s Day, think of the call out cost!) and both my parents were absolutely furious about it all.

Obviously as a home owner myself now, I understand entirely why they were disgruntled to come home to what they found.

What I didn’t understand and still don’t to this day is why they thought it was all my fault! Somehow Sophie, Charlotte and Julia’s part in this party was totally ignored. My boyfriend, Tim who was a vicar’s son and unlike many of my boyfriends my Dad liked, jumped valiantly to my defence but his protests were dismissed and the blame lay firmly with me.

Did we learn our lesson?

Of course not, we always had a party when my parents went away. Fortunately they always warned us the day before they were due to home to give good warning!

As this is just about the end of 2018 I would like to give huge thanks to all my friends for their ongoing support and very generous assistance. It means the world to know we have your support and knowing you are there through all the tough times.

I had hoped to move forward with finding a home which Zach could begin to transition into this year but haven’t achieved it or made any real inroads yet.

I am worried by the lack of housing opportunities in Hertfordshire for young adults who have autism and complex needs.

These are young people who have often tried the short break units the County has for children to give carers a break and the unit has failed to be able to continue due to the complexity of need. The time they have spent away from the family home is so limited.

Transition needs to start early, it will be a long and difficult journey but it must start!

Zach can’t live with us forever because we won’t be here forever, he needs a forever home which is his and tailored to his needs which he can start to very slowly get used to.

Transition cannot be ignored by social services it should be addressed as a priority for those who need it.

At a talk I went to recently about housing opportunities in Hertfordshire almost the opening line was ‘we prefer people to remain in the family home’!

I love Zach with every last ounce of breath in my body and it will break my heart setting him on the journey to a new home but rationally I know it needs to be done.

It would be far more unfair and cruel for Zach to live with us until one or both of us were no longer here!

We have, thanks to the massive generosity of friends and family got our social enterprise off the ground. Thanks so much to everyone who contributed to our crowd funding, and who purchased our cards.

Our artist Laura Dixon has caught our ideas and concepts perfectly and we were all thrilled to see her illustration in print.

 

We sold 1500 cards which exceeded our expectations, Zach helped pack them up and take them to the post office which was at times challenging for him. I hadn’t considered how busy the queues would be in PO’s at Christmas but he coped brilliantly.

Our Spectrum of Misconception website is now live and can be found at http://www.spectrumofmisconception.com. It is a massive learning curve for me so I would be grateful for any feedback. I would also appreciate feedback on our cards, what you liked and what you didn’t if you get a moment.

We have more Spectrum of Misconception products in the pipeline, these are far more niche though so we need a sales strategy…as a nurse of 28 years I never thought I would say that!

All that is left is for me to wish all you wonderful people a smashing 2019, it feels like a massive step into the unknown with so much uncertainty in our own country and the world but look out 2019 I’m coming to get you!

Happy New Year one and all xxx

 

 

 

Harry Specters Chocolate Factory

John had the day off yesterday so we set off to Ely to visit Harry Specters Social Enterprise.

As we now have a fledgling enterprise we thought it a good idea to support this one by buying their products and seeing how they worked.

Christmas is of course the busiest time of the year for a Chocolate factory and there were boxes of beautifully packed chocolates, pretty chocolate lollies, Bears and Santa’s and more delights everywhere you looked.

We were given a very warm welcome despite the pressures of getting massive corporate orders out and it being black Friday.

We met Rosie in the office and then Mona and Shah came through and chatted to us about how they came to set up this award winning enterprise.

Their son Ash who has autism came up with the name ‘Harry Specters’. Its a great name and very easy to remember. Mona had a job working for the NHS in Mental Health but recognised that Ash would never have the chance to be in employment due to the lack of opportunity for people who have a disability.

Mona who has a lifelong love of chocolate decided to open a chocolate factory as a  social enterprise to give her son and others who have autism the chance which they needed to work.

I feel very strongly that until the chance to work is taken away it is very hard to imagine a life which has little structure or meaningful activity.

There are so many opportunities of work for most of us but imagine if the chance of a job was never there and your life desperately needed some structure and purpose to it. For most of us work serves a number of purposes, not least it pays the mortgage and for all that we need and want but it is also somewhere that we have a role, however high or low we are in the pecking order within the organisation there is something people rely on us to do, we also see our colleagues at work, some of them we may get on very well with, others we might be less keen on but we are usually not isolated and lonely while we are at work.

Harry Specters has now been running for 6 years and their annual turnover is impressive. They will soon be moving into bigger and better premises. They have won recognition for the Enterprise itself but also for the chocolates which they are producing, 22 awards in just four years….These aren’t just any chocolates, they are Harry Specters Chocolates!

We met the team who were in yesterday while they were on their lunch break, what was really great about it was that it could have been a group of employees anywhere at their lunch break they were all sitting around the table and laughing and joking with one another. Someone had just been and purchased a massive box of Krispy Kreme donuts, was it a special occasion I asked? No, Mona answered they are always buying each other treats.

So after tasting many of the delicious, sophisticated varieties of chocolates, laden with bags of beautiful and luxurious chocolates, many of which Mona just kept adding to our bags so we could taste them,  we made our goodbyes.

We spent more than we intended but lots of friends and family will be receiving a box of these very special chocolates for Christmas.

These days many products you buy have a label saying ‘made with love’ well this product is made with so many things, love, drive, ambition for those who have autism, self belief that there wouldn’t be a label big enough to cover it.

Today I feel inspired, the drive of this  Mother-Father Team is changing lives and giving self esteem and confidence to a large number of beneficiaries and producing award winning luxury chocolates.

For information on Harry Specters please see their wonderful website http://www.harryschocs.co.uk if you are a chocolate lover you will be very tempted too I am sure.

Christmas card orders are being taken…NOW!

 

I am very pleased to let you know we are taking orders for Spectrum of Misconceptions first product!

Our Autism Awareness Christmas card is an original design with a subtle awareness message and a festive greeting.

Cards are £3.99 for a pack of 10 and a flat rate postage of £1.50. Please message me for orders and payment details.

It’s been busy!

One of the things my blog is meant to be about is life, so it is a bit of nuisance when life gets in the way and there aren’t the hours in the day to do some writing!

The last couple of months have been a struggle.  My poor Mum had a nasty fall, resulting in broken bones and a miserable hospital stay.

As a student nurse the ‘Activities of Daily Living’ were what was drummed into us and the importance of ensuring that these needs were met during a hospital stay. It was hard to witness the lack of personal care and the malaise shown towards patients who were elderly. Modern medicine is great but if we are to keep people living for so much longer we surely need to offer services that reflect the interventions used to achieve this. Life must have value to and quality. We cannot treat people as though they are no longer important once they reach a certain age.

Mum is now in a nursing home and my Dad still at home in their flat. They have been married for 69 years and it seems very sad so I am spending a lot of time beetling between them and trying to ensure they see plenty of each other.

While all this has been going on we have had Zach’s 21st Birthday Party. It was so great to see so many people who have been such a big part of our journey all in one place. The look on Zach’s face as more and more people he cares about arrived was a picture. Thanks so much to everyone for coming, you are all fabulous!

 

There has also been plenty of work going on with the ‘Spectrum of Misconception’. We cannot thank you all enough for your generosity and support with our crowd funding. We have the first illustrations for our autism myth busting cards and we also have a great logo and a Christmas card.

Our logo is based on the triad of impairments which are often referred to in relation to the autistic spectrum.

Triad of Impairment is used to describe the main features of autism. These are social interaction, Communication and language and rigidity of thinking.

The triad of impairment will tell you all about the most negative aspects someone who has autism may have. I am sure I don’t need to explain the meaning of our logo!

We are now working hard to get the Christmas card out in a timely manner so that it isn’t too late for those who want to buy it. I know some people are incredibly organised and buy cards early so  I can’t bank on everyone being like me and buying, writing and posting my cards on the last day of posting.

Our Christmas Autism Awareness message is….Autism comes in all shapes and sizes! It will be on the inside left cover, so subtle but lets hope the message hits home.

We have all we need for the packaging so can post cards out to online orders. All our packaging and products will be environmentally friendly and recyclable.

Our Christmas card is a beautiful design which has a very subtle autism awareness message. We wanted our card to be able to sit happily alongside others whilst raising awareness at the same time. I hope you will love it as much as I do.

We have a face book page and have been working on the website. I am pretty much totally useless with anything on a computer so am waiting for expert support to make them look as interesting and professional as we want them to be.

Please keep an eye out for our Christmas Card design and if you would like to order some let me know, I promise it will be ready as soon as possible.

The website (when it goes live) is at http://www.spectrumofmisconception.com and the facebook page is Spectrum of Misconception.

I look forward to hearing from you (fingers crossed!) 🙂

 

 

 

 

 

Crowd Funding update and massive thanks!

Hi all, thank you so much for all of your wonderfully generous donations. We really appreciate it. We think it’s high time to let you know what our plans are and what progress we are making. After deliberating over the type of product we wanted to create, we felt strongly that it should somehow link closely to Zach’s journey and autism awareness more generally. For all the goodwill that is out there, there are still so many untruths, misconceptions, and myths that we need to work together on to dispel and change.

 

For that reason, we have decided to capture many of the mainstream misconceptions of autism and to do our best to make people think differently. We are doing this by employing a wonderful artist and illustrator to capture some of these concepts pictorially, which we will then be designing onto cards. The plan is for the cards to  be brought to Zach’s base where he and his team can organise and process orders, package the cards, and post them out to customers. We plan on opening an online store where people can buy the cards, interact with like-minded people, and give us their own ideas for future designs and concepts.

 

We have finalised the name of our product, and are putting the finishing touches on our logo and first two concepts. For our next update – coming soon! – we will upload some of these images to show you the process.  We would really like to get your feedback and input! We will also post some of our ideas to online forums to get feedback from other like-minded people in the hope that we can truly offer a product that will be valued by those who buy it. Finally, we’ll set up a Facebook group in the not-too-distant future to facilitate further discussion as we continue to develop our concepts and corresponding designs.

 

Thank you so much once more for your donations, and watch this space for further updates!

Carer Burn Out!

What happens when Carer’s burn out?! Who picks up the shattered carer pieces and tries to put them back together again?

Over the years it would be fair to say I have crashed and burned a few times, the degree of care tips slightly with something, a family bereavement or as at the moment my parents needing more support and I feel like I am in free fall to the bottom of a very deep hole.

The pressure of needing to be able to care at all times, 24 hours a day and 365 days a year is huge. If all those who care stopped to think about it, we would probably all be in free fall.

When it comes to caring for Zach we have a plan, and we hope we are heading in the right direction. We have the best support in place for him that we could hope for and he is learning and for the most part enjoying life.

We no longer have any overnight short breaks for Zach which was a step backwards for him and us. Zach had got used to spending a couple of nights away from us each week which was good for his independence and it gave John and I a little window of time to do ‘normal’ couple things, a meal or maybe a film.

However eventually we will find somewhere which will make a suitable Transition House for Zach and some other young people who are at a similar stage in their journey and he will start to have independence from us again. Although it will be a slow process it will be good to know that we are moving forward.

So I have my job caring for Zach, there isn’t a day goes by when I am not considering things which need to be put in place, looking for interesting trips out, making appointments, buying equipment or wondering what to put in his nutri-bullet that night.

I have my paid job, 6 hours a week as a Community Staff Nurse, I visit patients in their homes who are in need of nursing care. Many patients are at the end of their life and require Palliative Care, It is so important that I am able to reassure both patients and family and friends. My head cannot fall off.

My parents are both 93, Dad is 94 on Sunday and my Mum in September. I am incredibly lucky to have them both and physically they are both in good health.

For a number of years my Dad has been almost completely deaf and my Mum has had Alzheimers Disease. This combination makes communication very difficult, my Mum often struggles to find words and my Dad can’t hear them even if she can.

Over the past months things have become increasingly difficult for them both. My Mum has severe anxiety at times and my Dad can’t seem to find a way to calm and reassure her. Other days my Mum is lucid and cheerful while my Dad is tired out and sleeping. My Mum is lonely and feels that they never do anything interesting or laugh with other people and has days when she doesn’t want to get out of bed.

The Carer’s go in at 09.00 every morning and my Dad panics if Mum refuses to get up! With age, my Dad has become inflexible and change aversive which I get, but it is also understandable that some days my Mum doesn’t want to get up.

I have been getting more and more frequent phone calls asking me to go round and help, I can hear shouting in the background, speak to my Mum on the phone who sounds distressed and feel I have to go, most people would. The idea that my elderly parents are struggling to cope and I might just be able to calm things down is what makes me go. It sometimes takes a while but we usually get there.

It is strange how one day you are bumping (not gliding) along like a sort of busy Water bird, paddling madly out of every ones view and then all of a sudden you feel like a dying swan. You don’t feel able to bump along anymore, the mass of responsibility that you feel at making sure everyone else is doing okay completely overwhelms you and you crash and burn.

I am at the moment hopefully back on the way up from my latest burn out, I have organised GP and Social Work visits for Dad and Mum which I hope will be fruitful.

I have to acknowledge I am only human and I don’t have a magic wand. I can’t change what has happened but I can help to change what might happen if help is put in place.

John is as ever a massive support, as are wonderful friends and it certainly helps to talk.

Sadly this is all too common for Carer’s, the isolation, expectation and responsibility just weighs too heavy.  It is hard to know what the answer is, we can’t predict what will happen in our lives so can’t prepare and alter the course things take.

I am sending love and strength to all those who are Carer’s, you do an amazing job. It is probably the job with the least recognition and plaudits but one of the toughest there is to do.