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.