It’s a sign of things getting back to normal when questions about starting school arise. If, like us, you don’t have a ‘normal’ this can be a tricky situation. In truth there is no one particular type of school that would suit Charlie. Does one exist for a child who can read The Telegraph but who can’t communicate with the person sitting next to him? A place where a child can type but who can’t use a pencil? A place where a child pours scorn over the idea of Father Christmas but who thinks steam engines can talk? A place where Makka Pakka is friend and anyone outside the family is foe?
Over the years I’ve looked at many options. Inclusivity in mainstream, small private schools, specialist schools, autistic schools and alternative schools such as Steiner. No where is a good fit and I’ve found most mainstream schools want to run a mile and the specialist schools have a vision of ‘autistics’ in that they think they all fit into the same category. Charlie did start at a mainstream nursery and then school and he was coping well. And then he got cancer. All the hard work that went into getting him properly statemented to support him in mainstream and working with him to improve his social skills and calming him down has gone. I can hardly complain. He’s alive at least!
Last week in a meeting with his mainstream school it appears they are seizing their opportunity to rid themselves of a challenge and have suggested perhaps Charlie might find himself more comfortable at another school. I can’t say I totally disagree with them but their timing and the way in which they have gone about it hurts. The boy who was coping and standing in line, waiting his turn, playing in small groups and standing at the front of class waiting for his cue has disappeared behind a cloud of chemo and a puff of radiation. Whilst it is true we have moved on from previous decades of hiding away children with special needs in mental hospitals and asylums, their acceptance in our society still has far to go. It doesn’t sit comfortably with me to put my child in a school specialising in special needs. How can removing them from society be a long-term plan?
Long-term plans are a worry when you have a child who is recovering from cancer treatment. The very idea of sending him to school seems a fantasy at the moment. His body needs to get strong again, he still has a Hickman line and he still can’t walk. To be apart for any length of time when you were so very nearly permanently apart seems unimaginable. But life carries on regardless of what has or what will happen to you. Trying to get back to your own brand of ‘normal’ is vital. Whilst we do homeschool; we paint, we make up stories, we do maths, we have adventures, I will never be able to give him the confidence of being someone in his own right who exists apart from me. To deny him the chance to share his collection of Thunderbird figures with someone or to giggle about girls with a best pal would be wrong. I’ve seen and cringed at his attempts at conversations with other children. At best this usually results in others asking him if he is stupid and I watch his face fall to the floor or at worst some children will try kicking him. He has stopped trying now and just issues a battle cry if they come near. It is heartbreaking. So school is a terrifying subject for me compounded with my darkest thought. What if the cancer comes back and you’ve sent him to school, a place he didn’t want to be anyway? What if his last years alive are to be spent having to try his hardest to fit in?
So homeschooling seems to be the way to go at the moment. And to separate home from school I’m renting a beach hut for lessons. And stepping outside of the hut is a promenade crawling with social opportunities for him. I can’t think of a better way to learn than looking out over a beach.
Some days it all seems so difficult and others, when the sky is brilliant blue above you and the sea a mass of sparkles in front of you and a beautiful boy is full of smiles beside you, then you know you’ve got it right. Some days Charlie just exists at a higher frequency than we can appreciate. My peg will never quite fit.