Jane’s son James was born 15 weeks early and spent four months in hospital fighting for his life. He is now 14 and has severe physical and learning disabilities. She describes as “clever, funny and living a happy and fulfilled life”. In her blog, Jane describes James’ first time at school.
Even though I had taken James on a couple of visits to school before he started, I couldn’t bring myself to leave him there alone on his first day. In most places I would have been politely encouraged to leave. However, this was a special school, and James was very disabled. I had the luxury, which other parents only dream about, of taking part in his lessons.
The first thing I noticed was that both he and I felt comfortable, as if we had ‘come home’. Trying to take James to mainstream nurseries and playgroups had been stressful. We had watched the other children make clay models with two hands, where James could only use one.
We had taken part in Hokey Cokey sessions, where he just couldn’t keep up. The kindest of teachers had not been able to make up for the feeling that James and I were apart from everyone else.
At Wilson Stuart School, everyone’s abilities were different from ‘normal’, so nothing was assumed. Different was normal. There were wheelchairs everywhere, children who couldn’t speak or walk and indestructible toys. There were numerous assistants, so one person could sit with James and help him post a ball into a marble run. James watched the ball while it made its way down a tangle of ramps and pipes, coming out at the bottom. I had never seen him concentrate so hard.
When the children went swimming, I went into the water too. However, James was taken by a member of staff. Even though James had arm bands on, if I had been with him I would have held him the whole time. But the teacher let him go, so he bobbed in the water on his own. I leapt forward anxiously, but the look on James’ face stopped me. He was nervous, but exhilarated. He was enjoying a freedom that I would have struggled to give him.
When we went back to class, James even stopped looking for me and crawled off. I was taken to the staffroom and given a cup of coffee. I began to feel an exhilaration of my own. I relaxed enough to read a newspaper! I saw that I could begin to get some life back and it would not be at James’ expense.
At lunchtime, I had brought a packed lunch, as James wouldn’t eat cooked food. But then he saw the sausages and gravy and the crumbles and custard served by the school kitchen, and started looking intently. It was to be only a few weeks before he began to tuck in with the other children, and eventually to use a fork.
On the way home that day, I realised that I had spent James’ babyhood keeping him ultra-safe; wrapping him tight as could be in a blanket of physical and emotional care. Sometimes his very life had been in the balance. As his mum I couldn’t put that behind me. But now, with the right support from school, he was ready like any child to take the first steps towards growing up.
Later on, when James needed the extended provision of a boarding school, we had to find our way through a maze of bureaucracy to get funding from the council. I wish I had known then that there was a charity, IPSEA, offering free, independent, legally based advice, to parents like me.
From September the law will change, obliging local authorities to give clearer information to parents. But with council budgets squeezed, families will still have to work hard to get their children the placements they need and deserve.
Learning Disability Week is run by Mencap and takes place from 16 to 22 June. The week is dedicated to raising awareness of learning disability and the issues that impact upon the lives of people with a learning disability.
This year, Mencap is asking you to remember your firsts – your first day at school, your first day in a job, or becoming a parent for the first time. Someone with a learning disability might need to overcome many challenges in order to experience the same life changing events as everyone else, so Learning Disability Week will celebrate the people who overcome adversity, prejudice and ignorance to experience their incredible firsts.
Each day of the week will be dedicated to a different first life experience.