Spectrum of Misconception

Its that time of year again, time to share a very special message.

Spectrum of Misconception is our Social Enterprise, set up to give our son Zach the opportunity many of us take for granted, to experience work.

When we set up the enterprise we wanted to make it relevant to Zach and so we came up with an idea which as well as giving Zach work experience also educated people about autism.

Autism is extremely complicated and varies so much from person to person. How many times as a parent have I had someone tell me ‘oh yes, I know someone like that’?  I can tell you, it is many! Have I challenged everybody who has ever said it? No!

To explain the vast spectrum would be like unravelling a never ending ball of string because there are so many differences.

We wanted to bust some of the most commonly held myths about autism, to share messages which would raise awareness of autism, to let people know that not everybody who has autism comes from the same mould. The only thing most people with autism definitely have in common is the label.

Our Enterprise was entirely funded using Crowd Funding and the very generous support of dear friends. We feel a massive responsibility to make the enterprise a success and to keep it going, we hope that we can expand and offer more people who have autism and complex needs the chance to gain work experience.

How can you help?

You can order some of our wonderful Christmas Cards. The cards are unique. We asked a local artist Malini Croxon to illustrate them this year and she has really captured our concepts. Both illustrations carry subtle autism awareness messages related to the image and a festive greeting.

Zach’s role in the process is packing up orders and taking them to the post office where they are weighed and passed through to the staff behind the counter.

 

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This is a challenge for Zach but he is doing brilliantly at getting boxes ready, packing up the correct orders and in the Post Office. He is helped with all this by his wonderful support team.

We hope to receive your order, for us there is no more important message than to raise autism awareness and understanding.

Find us at http://www.spectrumofmisconception.com

 

 

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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.

 

 

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.

 

 

 

(Not quite) Back on the chain gang!

Once upon a time in a life miles away from this one I was a cyclist. I grew up in a family of cyclists, six of us went out every Sunday almost without fail.

My parents wanted us to have a sport we could do as a family, it was a toss up between sailing and cycling and as they had both been cyclists before children arrived cycling won the toss.

Charlotte and I were very young, Charlotte was in a little child seat  on the back of the tandem with my Dad and Jo, I was on the tandem with my Mum while Sophie was on her own bike. As we all grew up there were various other combinations until we were all on our own bikes.

Cycling was something which we did but when I was very young I am not altogether sure I particularly liked it! It seemed that we would go out for miles, meet other cyclists who my parents then seemed to spend forever chatting to and we went in all weathers except torrential rain. Charlotte and I secretly expressed our pleasure to one another when we were lucky enough to get a rainy Sunday!  Clothes were nothing like the kit cyclists wear today, we went out bundled up in itchy Arran sweaters and about three pairs of socks…it isn’t sounding like too much fun is it?!

Once Charlotte was four we could visit Youth Hostels which was lots of fun, we met other families at the hostels. One family I remain in contact with to this day. We went on to go on a number of cycling holidays with them and for many years spent Boxing and New Years Day with them, now they were fun times.

The anticipation before reaching the hostel was always great, wondering what it would be like and we stayed in hostels of all shapes and sizes, some were certainly nicer than others. Some had a Warden who gave us a warm welcome and the hostel at Houghton Mill had a Warden who my Mum always ended up arguing with!

I am not sure quite when my absolute love of cycling began but from about the age of 12 I like my sisters and parents, was hooked. I did enjoy other sports too, Cross Country running, swimming, netball and gymnastics but cycling was always the priority.

All my sisters and I raced with varying degrees of success, Sophie was very good at time trialing when she was a school girl and junior, Jo was doing very well on the track when she very sadly died suddenly at 18, Charlotte was a great all rounder and she could sit on almost anyone’s wheel.

Me, well I never really had that need to succeed, I was fine in training and could grit my teeth and sit on for miles but when it came to racing when the going got tough the tough got going while I headed back to the race HQ! My real love was track racing and I probably showed most potential there but a couple of face plants, broken bones, concussions and a very good friends Campag pedal leaving a life long scar on my left eye meant that I lost my confidence and would never sit on a wheel closely enough to really be in the race!

Cycling was such a massive part of my life and despite stopping racing in my early twenties I continued to cycle to some degree until I had Zach.

I dabbled at a few other sports. I found running less time consuming when I was working so did that for a while, in the late 80’s went to a really hardcore aerobics class a few times a week, thong leotard (who invented them!) sweatband and leg warmers up in situ!

I also did a class called Work out for men, it was at a local sports center and in a massive room. It was a mixture of men and women and every week without fail a very hairy man would find his way next to me, I have nothing against hairy men or women but this mans sweat used to fly off him onto me. Sharing sweat with him felt way too intimate!

When I was pregnant it was my plan that I would be out running within weeks of giving birth. Things certainly didn’t go to plan, an emergency caesarian after a marathon labour and John having to go back to work the day after Zach and I were discharged from hospital didn’t help. I couldn’t even drive for six weeks let alone run.

I have attempted to return to exercise in the last 19 years, a brief go at Netball when I pulled my hand string so badly I could barely walk for two weeks, runs (actually not quite jogs) in the dark when nobody could see me, fair weather gentle bike rides never more than 10 miles.

When we moved to Wellington Street we found that the very steep stairs which lead from the bottom of Bengeo to the top were a very good aerobic workout so I decided that each evening I would run up and down them 10x! Ten very quickly became 5 and when a commuter walked past me while I was running I decided that I could find better things to do with my time!

A few months ago I went to see my GP about a pain which I have had in both my thumbs for some time. The GP requested a number of blood tests including cholesterol, Rheumatism and blood sugar. The results showed my cholesterol is higher than it should be and that I have Rheumatism.

Six weeks ago I decided I would go out on my bike three times a week every week in an attempt to get some degree of fitness and get my cholesterol down. My bike is an old but nice MTB, I have had it for over 20 years. I thoroughly enjoyed feeling my fitness increase and find myself not struggling so much up the hills, increasing my mileage and average speed.

I loved seeing the countryside and wildlife, imagining myself to be some sort of Snow White character(!) talking to the rabbits and birds as I went along. Cycling is giving me some head space to stop worrying about what I need to be doing for Zach and thezachproject.

I had mentioned to John that it might be nice to pick up a second hand road or crossover. As the third of four sisters I have only ever had one brand new bike in my life which was my 20 + year old Raleigh Team Titanium MTB.

Imagine my surprise when I came home a couple of weeks ago to find a beautiful shiny cute little road bike (it has to be little for me!) My initial reaction was that it is too nice a bike for me and for what I will be doing on it, I also felt some degree of pressure to ride it!

It is without doubt the nicest present I have ever had and riding it is fantastic. I feel like I am flying even though I am only just about hitting evens. My mileage and average speed are going up and I want to ride my bicycle!

Getting the balance right between being the parent of a young person with severe disability and getting some time out for yourself is tricky and up until now I haven’t been getting it right. I have quite stupidly felt a degree of guilt when I take time out for me but with things going well with thezachproject and my health suffering now is definitely the time to start.

Thanks so much to Senova Cycles of Hertford and of course to John for sorting out the best bling I could ever have wished for. I no longer feel guilty about having such a wonderful bike when I am a plodder I just look forward to the next time I can get out on it 🙂

 

 

 

The way forward?

I’ve been quiet for a while, there seems to have been a lot going on.

We had a bumpy few weeks when Zach first moved into Water Lane House, but thank fully he seems to have settled in now. He has two new Beam team members, Poonam and Enrico and he seems very happy that they have joined thezachproject.

A couple of weeks ago we received the good news that Health had agreed to part fund Zach’s support. The news came after 14 months of form filling and chasing the elusive funding for young adults with severe autism which is Continuing Health Care!

Before we started the process I was sure that Zach met the criteria so I pushed to have the assessment done. I am very pleased that despite occasionally feeling like I was having my teeth pulled we pursued it.

Zach is the first young person with autism and complex needs who is not in a hospital setting in Hertfordshire to receive Continuing Health Care funding and it feels like a real victory, not just for Zach but for all the other young people in a similar situation who will hopefully now be able to use Zach’s funding as ‘case history’.

I spoke to Zach’s Learning Disability Nurse, Faith last Thursday and she was thrilled that we managed to secure Continuing Health Care for Zach, we are very grateful for all the work she and Beam did to help us secure it.

Hertfordshire social services are going to meet to plan how this could help bring people similar to Zach, who have been placed out of County back to be closer to their homes and families.

The manager of Beam, the CEO and I met with a Commissioner from Hertfordshire to discuss commissioning Beam in Herts. It was a strange meeting! We had been asked to meet but there didn’t seem to be an agenda. Anyway it was interesting to hear what the Commissioning teams in Herts are concentrating on at the present time.

The Transforming Care Commissioning team are working on bringing people who have been placed in long term out of county and in county hospital placements back to the community. My thoughts are if the commissioning team and social services got together they might see that there is a way to stop people being sent to these last resort places in the first place! Although I understand that bringing people back into county is a very good thing, I think there should be a dual strand of work being done to prevent further people being sent the same way…..who would then need to be brought back into county….and so on and so on!

My personal opinion is that all commissioning teams should be fully aware of the Transforming Care agenda and working towards that so they are always moving the young people forward rather go back to go forward…does that only make sense to me?

Transforming Care focuses on five key work strands of activity-

Empowering individuals – giving people with learning disabilities and/or autism, and their families, more choice and say in the care and support they receive.

• Getting the right care in the right place – ensuring that people are receiving high quality care and support, with a focus on supporting people in their local communities.
• Regulation and inspection – tightening the regulation and inspection of providers to drive up the quality of care.
• Workforce – developing the skills and capability of the workforce.
• Data and information– making sure the right information is available at the right time, and continuing to track and report progress.

When we talked to the Commissioner at the meeting it was clear that if Beam become commissioned in Herts they would be another service provider, a name along with all the other names of companies who provide support. What social workers and commissioners would see is that they are a little bit more expensive than other providers and so they would not usually be their first choice of provider.

In our experience when the wrong agency is commissioned to provide support things can go horribly wrong and before you know it the whole family is hanging over that very steep cliff edge again with the agency having pulled out because the workers they provide do not have the knowledge or expertise to support someone with complex needs.

This is so important and Beam absolutely do this for Zach! – Getting the right care in the right place – ensuring that people are receiving high quality care and support, with a focus on supporting people in their local communities.

This may sound like a party political broadcast (and there are more than enough of those at the moment!) for Beam but I feel so strongly about what happens to all young people who have severe autism and complex needs who fall through the net time and time again and do not get the chance to have high quality support so do not meet their full potential and are therefore unable to have a rich and fulfilling life.

 

Ambitious about Autism have had their college ‘Ambitious College’ officially opened by the Minister for Vulnerable Children and Families, Edward Timpson MP. It is great that the dream parents at Treehouse School had has now come into fruition.

I along with many other parents at Treehouse School thought that this would be where Zach finished his official education. It is hard not to feel let down by the charity and organisation when I see press articles suggesting that Ambitious about Autism are ambitious about ALL young people with complex needs and autism. Last year when Zach left Treehouse School he was not the only student who was refused a place at the college the charity had opened and that we as an extended family had contributed money towards. John’s sister Caroline had a big party for her 50th birthday and rather than have presents for herself she asked for donations to Ambitious about Autism to go towards the college where she thought her nephew was going! I am absolutely sure many other families also contributed to make sure the college was a reality too.

Despite my disappointment at Ambitious about Autism no longer being a charity for the most severe and complex people who have autism it is great that London now has a college. I hope that the students who attend are happy and learning.

For Zach I think that not being accepted by the college was a good thing, at the time it certainly didn’t feel like it but he could not be in a better place and with a more committed team than he is! Go Beam and Zachie 🙂

 

 

 

 

Tough times.

I don’t usually share our most difficult times with Zach.

When you are battling with the authorities for the support needed, all that is focused on are the most negative aspects as that is the only way to get the message across. It doesn’t matter how old Zach is I always feel like a traitor and as though I have betrayed him.

When I was still green I was desperate that people realised Zach’s potential and wanted them to know what he could do, not what he couldn’t. However small the steps forward were I wanted people to know and like any other parent I was proud of him. However I quickly realised that this wasn’t the way to get support.

Zach is having a particularly tricky time at the moment and the most difficult part of it is that we don’t know what is causing it. It must be so frustrating not to be able to express your feelings and not be able to make other people around you understand why you feel anger and upset.

Zach is supported by a fantastic team in Beam ABA Support, they take data during each and every session and analyse the data.

A definition of Applied Behaviour Analysis from Wikipedia:-

ABA is an applied science devoted to developing procedures which will produce observable changes in behavior. It is to be distinguished from the experimental analysis of behavior, which focuses on basic experimental research, but it uses principles developed by such research, in particular operant conditioning, classical conditioning and social learning theory.

ABA uses ABC which is

Antecedent-what happened before the behavior

Behaviour-what is the behaviour

Consequence-what happened as a result of the behaviour

The ABC can show both positive and negative behaviours.  Positive behaviours need to be positively reinforced whilst negative behaviours need a different approach which is carefully tailored to the individual.

After almost two weeks of Zach escalating frequently at things which would not normally bother him both John and I are feeling very desperate.

The Beam team are absolutely wonderful and seem able to take it all in their stride, though last night something happened which was a first for us all.

I was going to Laughter Yoga which seems rather ironic now! Zach was going bowling at the local leisure park with two of his support workers. When Zach left home he was happy and bouncy, he loves bowling. I don’t think it is the actual activity he loves but the vibrant environment, but it is certainly near the top of his list for favourite activities.

When they arrived at the leisure park Zach was reluctant to get out of the car and shortly after leaving the car he had a high intensity escalation. It being the school holidays there were lots of people around.

Most of the general public have not ever seen someone with autism having a full on escalation. Naturally they don’t understand what is happening. A crowd grew around them which is the last thing needed, space and a clear safe passage to a place of safety is needed. The place of safety last night had to be the car.

A number of people asked if there was anything they could do to help while others demanded to know what was going on. So while the Beam team were trying to safely get Zach back to the car they were being followed by three men who wanted to stop them to find out what exactly was happening. To remain calm and polite in that situation takes exceptional strength but they managed to.

Zach was still escalated when they reached the car and the group of men who followed them were still there, there was also somebody on a bike following them. The team were feeling uncomfortable about being followed by a group of men and the next thing that happened was a police car came steaming into the car park followed by another three and pulled up next to the car.

The team were questioned by the police about who they were, what they were doing. They had to give my name and number. It became obvious that people had thought that Zach was being abducted.

It was a first for Beam to be questioned by the police and a first for us all the police being called. Obviously we all found it both concerning and upsetting.

When I went to bed I lay thinking about it. I can quite easily see why those who do not have sufficient support do not take the person they care for out into the community. It can be so daunting to receive unwelcome stares and comments when you are struggling to keep a lid on things and everyone safe.

If you have time please read the article this link file: http://medicinetimes.info/2016/05/08/my-son-has-the-kind-of-tas-aout-term-life/ it describes our life pretty well.

I posted the article on facebook and some body commented that not many people have autism this severely, sadly I think the fact is that not many people who have autism so severely are seen out in public.

Every morning I try to have positive thoughts about the day ahead, hoping that Zach will have a good day, two weeks feels like forever when your child is having such a tough time. I am a natural optimist but it can wear very thin at times like this.

It is fair to say the benefits of Laughter Yoga were cancelled out pretty quickly.

Today is another day and Zach went off happy, I have everything crossed that this will be a good day for him and all around him.

 

 

The Wonderful Mr Saysell

Today is our wedding anniversary, 17 years of married mayhem!

I probably don’t mention John as often as I should in my blog.

He is an absolutely vital part of our team of three! And I know this is a cliché but has been a rock during the whirlwind our life has been since Zach’s birth.

I may be perceived as a strong person but I have had many wobbles since our first concerns about Zach and autism. I initially found being different very difficult. I think the main reason for that was that I didn’t want people to judge Zach, or stare at him or think that his behaviour was odd. For that matter I didn’t want people to judge us or stare at us, I don’t think I especially minded if they thought I was odd.

I felt isolated and lonely and very sad. We tried so many different things to help Zach and his autism and none of them worked because there is no such thing as a magic wand. I went along to support groups and tried to meet people in a similar situation to us but I still felt the same.

I started to have panic attacks which were usually about what might happen, rather than what had happened, because when it did happen it really wasn’t that bad but my head and heart were in a bad and sad place. It wasn’t the life we had expected, and it was very hard to change our expectations, to hear what other peoples children were doing, and what they were doing, that we were unable to do.

We had a break planned to my parents in Spain. We had to set off at some horribly early hour and drive down to Gatwick where we had booked a carpark which was miles away from the airport. We had to get a bus to the airport which made me feel travel sick and by the time we actually got off the bus I could feel the panic bubbling away, getting worse and worse. As we approached the check in desk I pleaded with John that we went home but he obviously wanted to go on holiday. Whilst waiting in the queue to check in I passed out, I think that is the first and last time I passed out due to anxiety (I am not complaining, it was more than enough) We got to Spain and I spent the entire week on the verge of melt down, Zach was happy and cheerful and if I was worried about him coping with the change of environment it was a wasted worry!

Eventually my fear of having a panic attack meant that I became terrified to leave the house. How John managed I will never know. He worked full time,  did all the shopping and took Zach to playgroup every day and picked him up. He took Zach to all his appointments with Doctors and speech and language therapists whilst I stayed at home a quivering wreck.

John did this for about a year until I felt strong enough to start going out and about again. Anywhere that we went the agreement was, that if I needed to go home we would and I think that the knowledge that I knew John meant this allowed me to become more confident over time.

For the next few years I would occasionally have a wobble when times were extra tough (I can’t just say tough as times are certainly always that!) and eventually despite the cost being £125 an hour John sent me off for Cognitive Behavioural Therapy and since then I am happy to say that although I do on occasion feel pretty desperate about things I don’t have the awful sense of foreboding that you have with anxiety attacks.

Although I am far removed from the person I used to be before autism entered our life, when it comes to being Zach’s advocate I am back to being confident and self assured and will battle on until I am the last (wo) man standing if need be.

John and I are both very different from the people we were when we met, our lives have changed beyond all recognition. We all expect our lives to change when we have children but when you have a child who has autism or another disability your world becomes much smaller. People blame the autism but it is often inability to accept the autism which has limited a number of relationships and only the very good friends remain.

Our anniversary today has been as our whole life is, unconventional! I called into see my parents with a great big bunch of flowers as they have been married for 67 years which makes our 17 sound like a walk in the park! and then we went to do some jobs at Zach’s new base. We shared a Waitrose sandwich for lunch. While I am typing this, John is vacuuming  a trail of granola up which Zach has spread around the house.

The reason for this blog post is to say that although today wasn’t special, we didn’t do anything remarkable to mark the day I know I am very lucky. John is a great husband and a brilliant father. Zach and I are both very lucky to be on his team 🙂

Happy Anniversary John, we love you.

 

 

 

I am very pleased to announce..

thezachproject is in its new home and it is a great space! Zach has taken to it like a duck to water and seems very happy in his new surroundings.

John and I, with the help of some very kind friends got the keys on the last Thursday in February and painted every room, put in new kitchen units and made it Zach’s own ready for him to start using just 6 days later. I felt like we were on 60 minute makeover(except that it obviously took longer than an hour)!

We still have some jobs to do and changes to make but I am pretty pleased with how it is all looking and thrilled that he enjoying being there.

While we were still uncertain where we were going to go after we left Scott House we held an open morning at thezachproject. We invited along 0-25 professionals and County Councillors who had been kind enough to get on board with our search for a new hub.

Cormac and Mary from Beam ABA Services came along to meet our visitors and chat to them about what they were doing with Zach and how they differ from conventional care providers.

An amazing and wonderful outcome of the open morning was that Sue Darker who is the Operations Director for Learning Disabilities and Mental Health told us that she would like Hertfordshire to Commission the service working with Beam and with me Co-producing. It is a very exciting and thrilling idea that Hertfordshire, which before thezachproject had nowhere suitable for young people like Zach are now interested in commissioning the service and making it available as an option.

Those of you who have read my blog will possibly remember the difficulties we had selling the idea initially to the powers that be. It was unknown territory to Hertfordshire with the added uncertainty to them of using Beam ABA services who were not a known provider. Had it not been for the expertise and tireless work of Beam thezachproject would not have worked. I had an idea but it would have been almost impossible to get it off the ground without them.

Cormac and I will be meeting with Sue and commissioners in April.

Another massive pat on the back goes to Hertfordshire because they are one of only two local authorities to signing up all of their special schools to The National Autistic Society Accreditation programme. It was really good to read this and it would be great to think that they may go on to sign up all Hertfordshire schools and not just the special ones! One step at a time though…. 🙂

 

 

 

A rant…

Sometimes it just seems impossible to keep a brave face on things.

We are having no success in finding a new base for Zach and I am having to explain over and over again to very well meaning people about Zach’s autism and needs.

Explaining this is never easy, it sometimes feel like I am beating myself up every time I have to do it, especially on a day when I am having to explain multiple times.

I don’t expect ‘Joe Average’ to have any in depth knowledge of autism, the autistic spectrum and the fact that people with autism maybe are or maybe aren’t also physically disabled, but Zach is definitely physically 100 % able and stairs are definitely not a problem…that seems to surprise some people.

Disability is a word which has so many different connotations for so many people, mostly people are thinking of somebody in a wheelchair and probably look far more sympathetically on that person than they do to the person who is struggling with sensory overload and trying to make themselves understood loudly!

Then there is the word sympathy. Sympathy has its place but that place isn’t making me feel as though my life has been ruined because my son has autism. Empathy is much more appreciated and practical help! It is far easier to be sympathetic as that just involves making what are considered to be the right noises and having people tell you how wonderful you are because you evidently love your child and don’t want to send them hundreds of miles away to a residential placement….’it would mean you could get your life back’!

Well he is my life! He is my career and if he is happy we are happy! I don’t want to be told how wonderful I am because I love my son! He is my son, it would surely be far more of a surprise if I didn’t love him!!

Now I’m not saying I NEVER want to be told I am wonderful (John Saysell, please take note!) but I just don’t want it to always be in the context that I am wonderful for being a mother!

I am lucky to have Zach, I adore him and love him like most mothers, I don’t want to be constantly talking about the bad bits, I want to tell everyone about the good bits!

Sorry for the rant, this morning has been particularly challenging with phone calls to people who through no fault of their own have little or no experience with autism….

Tomorrow evening I am going to have my first experience of laughing yoga and boy! do I need it….however when I say my first experience it isn’t true, I’m always the giggler at the back of the room!

 

No Email Ping-Pong here!

I wonder if the saying ‘watch pot never boils’ has a similar 21st century saying…something like ‘glued to your outlook, inbox never pings’….or something 😮

We have just 48 days left in our current hub for thezachproject and my glass half full feeling this evening is that we aren’t any closer to finding a new place.

It isn’t through lack of trying I am emailing madly, phoning and knocking on doors but the old…you never phone, never call etc  applies.

I have asked for advice from some people who have a lot of savvy with this kind of thing and I am following there advice but my goodness why can’t anyone pick up their telephone, open their door or ping a blooming email my way!

One of the local County Councillors has really engaged and I met with him on Monday, along with Diana Eden another parent. We hope that Sam will be able to share the hub with Zach with his own Beam team. Dr Andrew Stevenson was very generous with his time and keen to listen to what we had to say, and he wants to help us. On Friday I am meeting with our MP who I hope will also be on board.

Today I spoke with the local paper about our situation, the reporter seemed quite insightful, I hope it is a positive article which garners some interest. He did ask me to let him know if we get any response….it will be in your Hertfordshire Mercury tomorrow! We were  asked for some photographs, simple for Zach, not so simple for John and I. I searched my computer for a family photo, not a single one and John then searched his and found one of the three of us on a carousel at Butlins, I wasn’t really sure that was what the Mercury were after, I did have a few of Zach and I wearing bizarre head gear over Christmas,  maybe not quite right for this.

 

I visited the Community Voluntary Service which is based in Stanstead Abbots and met with Fay Turner who is the services manager there, she is a lovely lady full of ideas. We chatted for a long time and she mentioned an empty space in central Hertford which sounded very interesting. It has been empty for some years apparently and belongs to East Herts County Council, I have contacted them…still no ping!

Last week I was completely sold on the idea that we buy the biggest portacabin there is and then we have a permanent base which is ours….however where are we going to put that massive portacabin?! Then John suggested we purchase a barge…..I think we were losing the plot slightly by that time. Maybe if we had a space the portacabin could work, it would be a good starting point until the project grew and we needed a bigger space.

People have been very kind and thoughtful making suggestions about places we can look and people we can approach but one of the absolute requirements is that we are within walking distance of a mainline station so members of the team can get here, and the other is that we are close to a community so that it can be accessed. Both these requirements immediately make the building/space we are looking for worth a lot of money!

I have emailed and phoned Commercial Estate Agents, the same one a number of times about different properties….PAUL WALLACE but it always goes to answer phone and I have not had a single reply to my emails.

Today I emailed various Directors, Managers and Commissioners from Adult Care, Zach’s own social work team and County Councillors and District Councillors and our MP to invite them to an open morning at thezachproject. I do think that people don’t understand what we need to re-locate which is actually just a physical space, close to railway, community with WC and kitchen amenities.

I don’t think the people who approved funding for thezachproject fully understand what it is we are doing so I have invited them all to come see for themselves. Still no pings! Cormac the Manager of Beam ABA Services London and Mary who is Zach’s programme supervisor have agreed to come along and talk to the powers that be about why thezachproject is working and what exactly it is that they do.

When John and I were at Scott House on Sunday afternoon having a tidy up and trying to find stuff we could get rid of I thought about all the hours of work, careful thought and planning we put into this wonderful space which Mudlarks gave us and on the one hand it makes me sad that we will soon be dismantling all we have done but on the other we have proved that thezachproject is working, that Zach is learning and accessing the community.

Please do let me know if you hear of anywhere that you think maybe suitable, and if you lie awake for hours at night use that time wisely and try to solve our problem please….is it just me that does that?

Any suggestions, ideas, thoughts will be much appreciated. 🙂