What is the 2nd April all about?

April is World Autism Awareness Month. The United Nations deemed April 2nd World Autism Awareness Day 11 years ago.

The idea being to raise awareness, they committed to promotion of full participation of all people who have autism and ensuring they have the needed support to be able to exercise their rights and fundamental freedoms.

Sounds good so far.

I wonder however, what this is supposed to mean to the thousands of people who have autism and their families who struggle every day to meet the needs of someone they love who has autism and all the complex issues which come with it.

I remember thinking when I was maybe less cynical it was a good thing but how has it changed people’s perception and what difference does it actually make, how far have we come since the first World Autism Awareness Day?

 I am autism weary. It was never going to be an easy journey but with a massive increase in the prevalence of autism, 1 in 150 and despite being 11 years on not very much seems to have changed.

World Autism Day has somehow become a celebration of autism, but as a friend asked ‘why would we celebrate autism’. I don’t see many friends who have a child who has autism throwing a party. Autism is at best difficult and at worst wrecks families and lives.

Over the last 11 years there has been far more in the media regarding autism. Many of the public have an inkling about the triad of impairments but have little understanding that not everybody with autism is the same.

It is so rare for the media to share anything other than moderate autism. The exception is the horror stories of Winterbourne View and Mendip House to name two. Other than these grim headlines people who have severe autism, behaviour that challenges and complex needs are never mentioned.

What we can do to stop the vile abuse of power and violence to those very vulnerable people living in such establishments which I am sure sadly still exist, is let people know more about them and stop them leaving the communities they grew up in and make them visible.

If there is something in the news or on television friends and family eagerly ask if we have watched it. I have to say I see enough autism in my life.

The A Word which is a drama recently shown on the BBC portrays a cute little boy who has autism. All our children were cute when they were young, autism or not. What about people who are adults who have autism?!

Children grow up and it may come as a shock but adults do have autism, you just don’t see them very often!

 Channel 4 recently showed a program called ‘Are you Autistic’ which was hosted by young ambassadors of the charity Ambitious about Autism. I’m not suggesting life is easy for these young people but they are all able to communicate and indeed present a television program.

I emailed Channel 4, I applauded them for airing a program about autism but I explained that they were just reinforcing public perception of what autism is.

Their response was that autism is such a wide issue and they couldn’t possibly cover every aspect which was the reason they chose to cover this particular aspect.

My response (I do always like to have the last word, as my poor husband knows only too well) was ‘What is massively disappointing and sadly predictable with all the media coverage of autism is that despite it being intricate with so many different avenues to discuss it is always the same aspects which are shown and discussed.

I hope that Channel 4 will be brave enough to make a program which is not just a reinforcement of what is already the majority of the public’s perception of autism’

I don’t expect they will.

How about World Autism Awareness Day instead of encouraging people to change the colour of their lightbulbs (which is never going to bring about change! Who even thought of that?!) sharing facts and figures about autism over the month of April.

Engaging with broadcasters and media who are willing to bring something different to the table and share with the public what autism at both ends (and in the middle) of the spectrum look like.

The more complex aspects of autism, perpetual anxiety, the difficulties with transition, the lack of suitable services, gut problems, what happens to people when they leave school and have nowhere to go to continue to learn, lack of peer groups, social isolation the list is endless.

What can be done to help people who have autism and are struggling in a public place, why getting out and about is as important for people who have autism as any of us, what can be done to make it easier to do this.

The Equality Act, Disability discrimination, the Care Act, the Autism Act and all the other things written in law which are ignored far too frequently. Empower those who have autism, parents and carers!

Engage with retailers, food chains, employers, towns and cities to make them more autism friendly. Ask sports centres, clubs and recreational facilities to provide inclusive activities. To make reasonable adjustment without families and carers feeling side lined and excluded.

World Autism Day and month should not be about celebration, celebrating autism is something of an oxymoron to me but should be about encouraging change and helping those who have autism have a life which we are all at ease with.

 

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Zach’s fingers are crossed for change and progress!

 

 

 

 

 

 

 

 

Planning ahead.

I haven’t posted for some time, I have had plenty to post about but it is more of the same, brushes with the law, the public intervening when Zach escalates in public. I don’t want to keep repeating how tricky it is accessing the community for adults who have complex needs until I have something positive to report!

I am in Manchester! A few weeks ago the Challenging Behaviour Foundation informed readers about a conference here, it is for those living with or working with learning disabilities and it is called ‘Fulfilling Potential and Supporting Better Lives’. The CBF were offering 5 complimentary tickets to the conference and very kindly gave me one.

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Fair to say, I’m not here for the view!

It feels like the right time for me to come to a conference about this. One of my goals this year is to make some headway with setting up a Transition House. The purpose of this would be to start the process of Zach beginning to start transitioning to what his life will be in the future, a life where he has independence from his parents.

Initially Zach would just visit for a few hours at a time to build up familiarity and explore the house and hopefully feel comfortable there. We would gradually build up the amount of time he spends there. Transitioning is especially difficult for people who have autism, they upset expectations and routine and therefore cause extra anxiety.

Zach will always need 24 hour a day support but at home although he does a little to help he is pretty much the King and John and I are his minions! In the Transition House there will be expectations that he will help with the running of the home which will definitely come as something of a shock 😮

At the moment Hertfordshire doesn’t have anything like this to my knowledge but I hope that they will be receptive to the idea.

Tomorrow there should be a wealth of  information about other such projects which have been successful and I really hope to go home with fresh ideas and confidence that this is something I can do!

It seems bizarre that I am here in Manchester to try to garner some ideas for Zach’s future when I am already worried about how he will cope without me at home tonight, and how I will cope not knowing how he is coping!

Fortunately John is on hand and is hopefully putting the finishing touches to Zach’s dinner at this precise moment!

I went for a wander to check out where the Conference is being held and as I put my hand in my pocket felt a slinky and a scoobie string, it made me smile! Anyone who knows Zach will know these are synonymous with him 🙂

 

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 Manchester is nothing, I’d go to the moon for Zach! xx

 

 

 

 

 

 

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 🙂

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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.

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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…. 🙂

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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.

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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!

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