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.
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.