Laura Trott and gold medals

Sorry I have been away for a couple of days at the World Track Cycling championships at the Lea Valley velodrome in the Olympic park! And what a couple of days it was, although I am no longer a cyclist myself (other than a few miles on a sunny windless day) I still love the sport and it was great to see so many fantastic rides from the GB team. I thoroughly recommend the experience even if you aren’t a cyclist your self, you will I promise leave wanting more.

Back to the Zach Project…We saw the new year in with some of our very best friends, we sat and chatted the evening away and played a few silly games and we also talked New Years resolutions, okay I know it wasn’t a very original topic but I bet you did too!

We shared our resolutions and when Vahe and Kerry asked what mine was, I had the same one I have had for some years now. I would like to set something up for young adults with autism and other disabilities, if I had the resource a hub where people could meet at the start of their day, do activities, hold social gatherings and make their own along with a people matching agency which provided expert support that was bespoke to their needs, the reason for this? I refer you back to some of our previous experiences with agency staff.

It was a great evening, they are very dear friends.

Early in the New Year Vahe contacted me, he is converting his dental degree to a medical degree at Kings College and he needs to do an elective project. He wanted to do his elective on researching what is available in the community for young adults with autism with a view to us starting a people matching agency at some point in the future, as I said they are amazing friends.

At that point we had no reason to believe that Zach was not going to Ambitious College, in fact we had every reason to believe he was! We felt pretty confident after meeting the principal and a member of their team being present at Zach’s Education, health and care plan transition that it was a shoe in as long as Hertfordshire County Council were in agreement.

‘An Education, Health and Care plan is the document which replaces Statements of Special Educational Needs and Learning Difficulties Assessments for children and young people with special educational needs’

There was much ‘whatsapp’ messaging between us regarding Vahe’s project, I suggested some examples of good practice we could explore and we formulated a plan.

It was around this time that the call came to let us know about Ambitious College refusing Zach a place.

Ironically Ambitious about Autism has been sponsored by the Department of Education to deliver their ‘Finished at School’ training. They consider themselves to be trail blazers expecting the same outcomes for young people with autism as mainstream young people, I obviously now realise that they mean ‘certain young people with autism’ rather than all.

In their jargon about the training they say ‘What isn’t reasonable is the current lack of opportunities for young people with autism once they finish school’ I concur, and feel very strongly that this is the case and despite their ‘Finished at School’ project coming to an end this month, little has changed for young people with severe autism and behaviour that challenges.

In the Autism world there is The National Autistic Society which is good, and offers great support for families who are experiencing many different problems but they are really geared towards the middle/high end of the spectrum and although we are members, they offer very little for us as a family.

There are other Autism charities but very few are aimed at the people with the most severe and challenging behaviour which goes with it.

There is a great charity called ‘The Challenging Behaviour Foundation’ to be found at http://www.challengingbehaviour.org.uk, some of what they do is provide support and training. They have a forum where parents and carers can ask others in their position for advice and ideas about difficulties they maybe experiencing.

They do a lot of work with the Tizard centre at the University of Kent. The Tizard centre is the leading UK academic group working in learning disability and community care.

Despite a suggested 25% of those diagnosed with autism being non verbal there is very little help available specifically for them.

Try to imagine how it feels to be unable to communicate how you are feeling, to say you don’t like a specific food that keeps turning up on your plate, that someone or something has hurt you, that you feel ill and your head hurts, that you don’t like the person who keeps taking you out, that you don’t like going for long cold rides on the back of the tandem with your Dad who is a mad cyclist (sorry Zach’s Dad!) or that you would like to have the choice to say where you want to go and who with but you don’t have the words. Imagine having so much to say but no way to say it.

Challenging behaviour is really very difficult to cope with but imagine if you had to resort to it to get yourself heard! There is a reason for all behaviour and unfortunately for many people who are non verbal it is the most effective way they have to communicate with people who are not ‘listening’ to them.

Challenging behaviour is defined as ‘culturally abnormal behaviour (s) of such intensity, frequency or duration that the physical safety of the person or others is placed in serious jeopardy, or behaviour which is likely to seriously limit or deny access to the use of ordinary community facilities’

Scope say that ‘the behaviour is a sign that something isn’t working. It shows that there is some need which is not being met or a problem with communication’

I realise that I have gone very off topic about The Zach Project but hopefully you will see as my blogging continues, why I felt the need to mention all that I have in this post….. I will be back with more news about progress we are making very soon.

 

 

 

 

 

Thinking cap on…

Going through my mind that Friday morning after a sleepless night was what our options were, and they were seriously limited.

John had talked about moving somewhere in the country where there was a college which could meet Zach’s needs, not a bad idea but we had to find that college and it would need to provide ABA, have expert autism provision and also have a robust positive behaviour support programme in place, have a place and be ready to take Zach in September.

‘Positive behaviour support is a behaviour management system used to understand what maintains an individual’s challenging behaviour. People’s inappropriate behaviours are difficult to change because they are functional, they serve a purpose for them. These behaviours are supported by reinforcement in the environment’

The idea I was formulating in my mind was this

  • Purchase a flat, two bedrooms minimum, Zach needed a base for his learning to take place. It would be a barrier to his learning given the long history of time spent within the home for the base to be at home and there would be many changes needed before learning could even start to begin.
  • Find expert support who would be happy to support Zach fulltime, teaching him life skills, communication skills and accessing the wider community.

 

  • Get funding for this!
Expert support is very difficult to find, I am sure many other parents who have a young person with autism can testify and relate to this. We have over the years had some seriously inappropriate people sent to provide Zach with a short break.
‘Short breaks provide opportunities for disabled children and young people to spend time away from their primary carers. These include day, evening, overnight or weekend activities and take place in the child’s own home, the home of an approved carer, a residential or community setting’.
Some of the types we have had through our door are as follows :-
People who told us of all the experience they had looking after ‘these’ people and then sat and chatted to me for what felt like hours on end while Zach occupied himself elsewhere in the house. They would usually ask how I first knew Zach had autism and then want me to go through the whole story. Others with a child who has autism will tell you the same as me, asking this question is about at novel as Monday following Sunday! We are all sick of the question and sick of people expecting a long, detailed and emotional answer. Sorry!
The chap who called Zach ‘Forrest Gump’ because he could run fast, why not Linford Christie?
Zach does have a good turn of speed so when a man turned up and sat on our rather low sofa was unable to stand up due to his exceedingly large body weight, I really felt that people matching hadn’t been a consideration by the agency.
We had plenty who turned up and before they had even crossed the front door step were telling us how tired they were, what a busy day they had had and how they couldn’t wait to get home and go to bed, not exactly inspiring.
Along with this mass of unsuitable types we have also had some fantastic support from people who we are still very good friends with, still support Zach and I hope will long continue to.
However, last November the Beam Clinic started working with Zach at home, delivering 6 hours each week and we have been thrilled with their professionalism and approach to a personalised learning programme for Zach.
Beam can be found at beamaba.com. I called Cormac Duffy who manages the Beam clinic in Finchley on Friday afternoon and asked if Beam would support Zach full time and he gave me a very definite and hugely reassuring Yes!
Purchasing a flat wasn’t going to be easy , we needed to find some capital…I purchased an extra lottery ticket for Saturday night!
Anyway I am pretty dogged when I get the bit between my teeth, so although I didn’t know how we would manage it, I was determined that this was the plan and it was going to happen….we had the green light from Beam and this was now The Zach Project.

The Zach Project

Hello

I hope you are wondering what The Zach Project is all about…

Zach is my son, he is 18 and due to leave his school in July. Zach has severe autism, he is non verbal and has behaviour which can challenge.

He attends an independent school called Treehouse which was set up by a group of devoted parents who wanted the best education for their children, Treehouse is now run by the charity Ambitious about Autism. Some years ago parents became worried about what their children would do when they left the sanctity of Treehouse school and were thrown out into a world which largely does not understand autism or accommodate difference too well and it was decided that the charity should aim to open a college, Ambitious College to give all young people on the Autistic spectrum a right to a college experience and education…..sounds good so far right?

We believed that Zach would be offered a place at Ambitious college, he attended the charities school and needed a college to go to when he finishes there.

He has done well in the 6 years he has been at Treehouse School using the applied behaviour analysis approach to learn.

Applied behaviour analysis in a nutshell is ‘the process of systematically applying interventions based upon the principles of learning theory to improve socially significant behaviours to a meaningful degree, and to demonstrate that the interventions employed are responsible for the improvement in behaviour.’ It is a tried and tested method of working with people with autistic spectrum condition and can be very effective.

On the 11th February while I was at work I received a phone call to tell me that Zach was not going to be offered a place at Ambitious College. The reason given was that he needs access to a quiet room and they could not provide this facility.

We had about 5 months in which to come up with another plan. You may wonder why I didn’t just approach one of the other colleges which I had diligently visited and researched, the reason I couldn’t do this was because there was no where within reach of our home in Hertford that would be able to meet Zach’s needs and offer a suitable environment in which Zach would learn and thrive.

My first reaction was disbelief and anger. Zach was going to be one of the fewer than ‘one in four young people able to access education beyond school’. Ironically I got this figure from Ambitious Colleges website.

Both my and John’s initial reaction was that we would challenge the decision to exclude Zach from his college experience but by 10’o clock on Friday morning I had another idea and that was The Zach Project!

I’m not quite sure how I will pull it together, I have the support of John, Beam Clinic, some great friends and professionals so The Zach project has begun!