It’s a grey, cold morning in November. The sort that really ought to be a mandatory duvet day. It’s hard to get going and the thought of sticking a limb out from the warmth of bed into the cold air is far from inviting.
But Orange is up. Chatting to his toys in his room and ready to start his day.
In this house, we are lucky. Every day Orange goes off to school smiling. He can’t wait to go. Once the uniform is on and the porridge is eaten, he’s looking out the window for his taxi and giggling all the way down in his lift.
For Orange, school is a little different than it is for most children. Unable to talk, walk or hold a pencil, sitting in a conventional classroom would see him lost and isolated. Even with 1-2-1 support, the academic curriculum and bustle of a typical school day would leave him unable to learn, or to join in with the other children.
Beyond pre-school age, mainstream education just wasn’t an option, as much as we hoped it might be.
A school day for Orange doesn’t include grammar, dictation, times tables, French or computer programming like it does for his sister. But it does teach him to access his world, to use his body, to be creative, and to be confident and social, in the very best ways he can.
Instead of learning to read, he is read to. With raucous laughter, his unadulterated joy at a ‘That’s not my…’ book, Supertato or Oh No George shows us that while he may not be able to read the words on the page, the narrative of a story is far from lost on him.
Instead of phonics, he takes part in ‘communication group’, where the children follow Makaton signing or learn to press a button to make a choice between two simple objects.
Instead of running about in the playground, he splashes in the hydrotherapy pool, the only place where he has meaningful independent movement.
Instead of PE, he has rebound therapy, where he is hoisted onto a trampoline to bounce, to feel feedback from movement in his limbs so that he recognises they are there.
Instead of computer programming, he goes to the dark room and uses ‘eye gaze’ technology to learn about cause and effect.
Instead of sitting in a classroom chair, he uses specialist seating and a standing frame to ensure his joints stay healthy, despite his inability to weight bear.
Orange can only do these things because he is in the right special school, with specialist facilities and specialist teachers to make it possible.
They also make it possible for all the children to do normal things that wouldn’t be possible in a mainstream school.
Like school plays. Every child in the school has a part, even if they have to be wheeled onto the stage on a bed because they have extreme medical or physical needs.
Like music and art. Even the children that cannot use their hands independently are helped physically to make music, to paint and do craft.
Like having lunch. Orange goes to the school canteen for his lunch just like any other child. His school provides a specialist allergy free, mashed menu for him that he is spoon fed carefully by an assistant. Some of the children are tube fed, which the onsite nursing team take charge of.
Like school trips. All the children can take part, because there is specialist transport and enough specially trained assistants to take care of the children’s needs. Orange has enjoyed trips to the theatre, to a specialist music studio, and to a sports centre to take part in team sport.
And his personal care and medical needs are catered for in a way that would be impossible in a mainstream school.
Every room is fitted with ceiling track hoists so the children can be lifted.
Every classroom has changing facilities for the children who are unable to use the loo.
Every child has the support of the on-site nurses. For us, we know that he is safe and in experienced hands if he has a seizure at school.
Without a special school like this, Orange would not be able to go to school at all. Which is the increasing reality for growing numbers of children with SEND.
There are simply not enough special school places. And it’s a smoke and mirrors bunfight of assessments, legal letters and negotiations to secure one of the few that are available.
For Orange it took 18 months.
18 months to secure a place at the one school within a 60 mile radius that could cater for his needs.
During that time we were told by various people in the local authority that ‘there were no places at the school’, that ‘they don’t take Cornish children’, that ‘we would never get a place’, and that ‘it would be impossible’.
We were told we were setting out to achieve the impossible by the very people employed to help us.
Were it not for help from the special education charity IPSEA, encouragement and support from wisened parents who have trodden this path ahead of us, legal guidance from a specialist solicitor and sheer bloody minded determination we might never have got there.
The day we got the call to say Orange had a place at the school, the three of us – me, my husband and my mum – fell into each other in tears of sheer relief.
Few families come through the experience of securing a special school place or an Education, Health and Social Care Plan for their child unscathed. There is huge financial and emotional cost.
Many of them never get there. Figures from the BBC this week show there has been a 64% increase in families in England resorting to home education because they feel so badly let down by the system they are trying to do it alone.
That’s why the BBC is running a special feature all week on SEND.
You can follow the coverage on BBC Breakfast, Radio 4 and Radio 5 Live every morning this week to hear about how the system needs to change and what you can do to help, by lobbying your MP and your local authority for change.
Follow #BBCsend on Twitter to join the conversation.