A different way of looking at things…
A couple of years ago I was involved in person centred support planning training.
The guy delivering the training was a great advocate for person centred planning very passionate about it and spoke about how sometimes we get trapped in ‘Service Land.
“We have a special bus which takes people to the special centre or special school where in isolation they do special activities.”
At the time Zak was in year 4 in a mainstream school and although academically he wasn’t making huge progress he was doing well socially and was very much part of school life. I could be a ‘normal’ mum and take him to school and he could go to a regular out of school club and take part in school discos etc. So I sat through this talk on ‘Service Land’ agreeing that the best thing was for complete integration and to get rid of ‘Service Land’ and if I am honest I was feeling quite smug about decisions I had made for my child.
Two years down the line I have now had to revaluate everything.
Last week Zak started a new school and I suddenly I find myself in ‘Service Land’. Instead of going up to secondary school with his peers he has made the transition from mainstream to a local special school.
After being a firm believer in mainstream education for him I have started to see the value of the specialist provision for Zak. What changed my mind? Zak did.
When we started to prepare Zak for transition to secondary it became clear that he didn’t want to make this step, he didn’t want to continue to struggle academically. He wanted to be like everyone else not singled out anymore, not mothered anymore. He also told me he wanted to go to school without me. He didn’t want his mum taking him into school when all of his friends arrived independently. His best mate goes to special school and goes on his own in a taxi. Zak saw that as independence, I saw it as singling him out.
His mainstream school were great, which made the decision so hard. Some of you will have seen my Facebook status’s agonising over what to do. I had a Senco coordinator telling me they would move heaven and earth to accommodate him and I had a Head of the local special school saying Zak would thrive there and they would love to have him. Zak was popular, well liked and looked after in mainstream. They included him as best they could. He went on the residential trip, he was made house captain and he took part in the nativity plays. However as he progressed through school he started to loose some independence. For example he had to use his wheelchair to get around the large campus, he had to take different routes or go at different times to things. He had a lot of 1-1 teaching which meant he wasn’t always in with his peers. He had a teaching assistant who became part of our family but he did start to heavily rely on her, in such a large and busy school he needed her reassurance. Also the other children were prone to mothering him. When we did visits to the secondary campus it became clear that he would loose even more independence. The decision was clear, and Zak after visiting his potential new school was definite on what he wanted.
The last day of term was awful, not for Zak but for me. I was grieving; this was another thing that Duchenne had robbed me of. It sounds silly but I was so sad that it had taken away my opportunity to see my son go into secondary school all dressed up in a blazer and tie. At his leavers assembly though I had the opportunity to see just how far he had come in mainstream education. He got up and played a 3 minute drum solo in a hall full of parents with all his class mates watching. The confidence shone and so did his talent. He made me so very proud.
I have learned a lot from my son over the past few months, he is a great teacher!
I have learnt that what I saw as segregation he saw as inclusion and the chance to be like everyone else.
This last week he has sorted his own bag out and carried it out to the waiting taxi. He comes home from school and tells me what he has been doing. For the last couple of years all I have had is a grunt and ‘I have done hard work’
Last night he said to me ‘Yeah it is school tomorrow’
He has found his place, a place where he can learn on the same level.
The biggest thing I have learnt that sometimes I am so busy fighting for his ‘rights’ and needs that I am in danger of loosing sight of what he actually wants.
I will continue to advocate for inclusion in our society for all disabled people, of course I will and I still think there is a definite value in mainstream education for disabled children but I also now see there is a value in our specialist school system and there is value in having the choice between good inclusive mainstream education and good inclusive education in a specialist provision.
Of course last Tuesday seeing all the Facebook photos go up of Zak’s peers in their new secondary uniforms was hard, it reminded me that my life as a parent is in ‘Holland’ and it is different. However the smile on his face this morning when he was packing his bag and getting ready for school and the excitement in his little strut as he walked out of the house, reminded me that my world is indeed special and although full of obstacles and heartache it is also full of smiles, rewards and accomplishments.