And the weather looked so nice…

It’s a bright and sunny morning, blue skies and it should make me feel cheerful. We haven’t had too many of these lately.

Every morning Zach is collected by taxi, this has happened since he was 4 years old, that’s nearly 18 years ago now.

The taxi was originally needed because the schools weren’t within walking distance, when you have a child who has additional needs they don’t go to a local school, they go to the closest appropriate school which can be quite some distance.

We have had a variety of drivers and escorts. There is always an escort who is responsible for Zach’s welfare while he is in the taxi.

We have had some drivers and escorts who have totally got Zach, and plenty of others.

Because someone drives your son to and from school every day does not mean they understand autism or your son.

They see your child lashing out for what they think is no reason, what they don’t know is what happened before your non verbal child lashed out.

Imagine a day where everything seems wrong for somebody who the importance of everything being right is paramount.

The wrong breakfast, they weren’t the right porridge oats. They were smaller and a different colour. A different escort in the taxi, she didn’t know how to put the harness on and she smelt different. Your class supervisor wasn’t in the classroom today, she is always there and usually greets you with a big smile and high five, the person there today wasn’t smiling at all. There was nothing for lunch which you liked, your 1:1 tried to make you eat peas, don’t they know you don’t eat anything green. You had swimming in the afternoon and you got to the pool to find the pump was broken and you couldn’t go in, swimming is your favourite activity and you were really looking forward to it. It’s nearly home time and you are looking forward to getting home and just chilling out and pleasing yourself. Everyone else has left school and your taxi still hasn’t arrived. The taxi finally pulls into the school gates and it is a taxi driver who talks about you as though you are not there and when you are getting in to the taxi he speaks sharply to your 1:1 and you lash out, you have had a day of being told what to do, of changes which you don’t like or understand and this feels like the final straw. The only way you can let somebody know that your day has been terrible is your behaviour.

This is what having autism can be like. For the non verbal the inability to let somebody know you are struggling with all the changes to your day, that having food you don’t like put on a fork and held under your nose repulses you, the smell of the escort was really offensive to your nose, the different person in the class room upset you, you like smiley people and people who are warm and friendly, you love swimming, the pool was there, it had water in it, you just don’t understand why you were denied your favourite activity, you were hungry all morning after not eating your breakfast, being hungry  makes you feel grumpy, you wanted to go home and your taxi was late and then the driver raised his voice and you really don’t like people arguing or shouting.

This isn’t a real day but it easily could be and how some of the world perceive that lashing out.

We have all had days which don’t go well but we can usually talk about it through the day, understand why things are not as we hoped and express how it makes us feel.

This morning Zach’s escort who we all love and has a brilliant relationship with him was off work because she has had an operation. Obviously we all understand that she needs to recover but Zach doesn’t understand where she is.

Zach’s taxi driver recently changed, the driver we had for a long time has left. The current driver talks about Zach as though he isn’t there.

The car has changed, and the harness which is used is not the right one for this vehicle. The harness is made for a people carrier which is what Zach used to travel in to school. This makes it very difficult to do up the harness so usually the escort gets in the back with Zach and helps do it up.

I have tried talking to the driver about the harness being the wrong model for a car but he tells me that it isn’t. I have looked at the manufacturers website and it clearly states this harness must not be used in a car. I have let the Council know that Zach is being transported in a harness which is not only unsuitable but he would also be trapped in were the car to get shunted from behind.

This morning Zach became escalated while having the harness done up and the taxi driver told me Zach should be put into care.

It is hard to imagine feeling that you have the right to tell somebody else that their child should be put into care.

What does he think would happen if Zach was put into care? Does he think that because Zach was behind closed doors everything would be okay? That Zach would no longer feel anxious at change and all those things he can’t control?

The driver says he knows all about autism as he has driven a taxi for 15 years carrying young people to and from school.

It’s hard to know what to add to this post, I am pretty sure I don’t need to conclude with my feelings.

Autism never has a day off, the smallest changes can cause anxiety and panic. And I am really not keen on Zach’s current taxi driver.

 

 

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.

 

 

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.

Vote for CBF Peoples 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!

newyear nice

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.

IMG_2211 Lauren

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.

IMG_2379 (002)

 

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

 

 

 

 

 

 

 

 

 

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.

logo c

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.

christmas2

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!) 🙂

 

 

 

 

 

Fingers crossed for humanness!

Work… it’s one of those things that we often don’t really feel like doing.  I am a Community Nurse and I often don’t feel like going to work but once I am out there visiting patients I am fine, I enjoy my job. I have been a nurse for over 25 years and it is part of my identity and who I am.

Freud said ‘Love and work… work and love, that’s all there is.’ And ‘Love and work are the cornerstones of our humanness.’

Imagine if you never got the chance to work, there was never going to be a job for you.

This is the case for many adults who have learning disabilities. In 2015 just 6% of adults who have learning disabilities were in paid employment.

Many people who have LD are very capable of work and would enjoy a job.

Having a learning disability means you are marginalised by society. Despite it being 2018 the world is still not inclusive.

When you think about jobs, the majority will have a social aspect to them. You are part of a team and you are valued by the rest of the team. This helps our self esteem, we all like to feel useful and appreciated. A job helps prevent social isolation.  In turn ( I do hear some of you saying your job is really bad for your stress levels, I promise!) this helps our mental health and boosts our feelings of self worth. All very important for over all wellbeing.

Despite Zach being non verbal, having autism and complex needs he could work with the right support.

A few weeks ago we decided that the exercise equipment we had at thezachproject was no longer needed, he regularly goes to the local gym which is far better for him than using the equipment on his own. We gave the equipment away and were left with an empty room.

I had a few thoughts about what we could do with the room but none of them were very inspirational. I asked the Beam team if they had any ideas.

Cormac Duffy who is the operations manager came back to me with the idea of a Social Enterprise so that Zach had the opportunity to contribute to the world of work and once set up we could get other young people involved.

To say I was excited is an under statement, poor Cormac had to spend an hour in the car with me rambling on about what we might do. I then sent a mass of texts with what were probably pretty useless ideas! I was buzzing.

I spoke to a friends and family asking if they had any ideas and began to piece together what seemed like a plan which has a great USP!

We now have the idea for Zach’s social enterprise, it is something which he can be totally involved in and will enjoy doing. It will play to his strengths and abilities.

You may wonder what Zach will gain from having a job. His life at the moment looks quite busy with learning life skills, leisure activities and pub lunches however we are all entitled to dignity and dignity comes with work, being included and contributing to the working world.

We have much work to be done before the project is ready to roll, business plans, decisions about what the product will look like and where we will sell it but we are already planning and on the journey.

We need a start up fund and if you feel able to contribute we would be very grateful indeed. We want our product to be as good as any out there, if not better! We need a fund to achieve this.

Please follow the link if you feel inspired to contribute 🙂

JUSTGIVING.COM and search Rachel Saysell

 

Thank you xxx