Paperwork, so much paperwork. Max’s annual review is scheduled in a few weeks. I’ve got to try to sort this out so everyone understands what Max wants to do, who he wants to become. Surely that has to count for something?
I’d better fill you in. Max is an incredible kid, but all parents say that but I’m right. Let’s do the medical stuff first, Max has a rotten type of Epilepsy, Autism, developmental delay, ADHD, learning disabilities, bilateral cleft lip and palate repair...and yada, yada, yada. You know how this goes. It sounds like the beginning of a joke but I’ve never met an SEN kid with just one diagnosis. He is unique in the best and worst of ways.
For the sake of anonymity, I’m going to call all the experts, doctors, teachers and professionals that I meet along Max’s Transition journey 'Bob'. That way, when things get serious, and I’m sure they will, at least I’ll still find the name 'Bob' funny.
The interesting thing about Max is that he gets flavours. And I mean in a serious way. At first, like most kids on the autistic spectrum he used to have dinner plates like pie charts. Each food type divided into its own little deliberate slice, nothing in actual contact with anything else. Really pretty plates actually. But then one day he noticed that the cheese he was eating tasted even better with walnuts. And that was his eureka moment.
His love of food started to grow. Max was offered a cookery class at school and flew with it...seriously impressive. Then another cookery class, this one was a Jamie Oliver course as part of his DofE. Max is now about to start the same course for the 3rd year running and he’s half way through doing cookery as one of his two GCSEs.
I live just outside Cambridge and find myself often surrounded by bragging parents showing off their 10* GCSE kids, the ones that will go to Oxbridge or the Moon, and well done them....but Max’s cookery GCSE makes me more proud than any of those Boden wearing, Picturehouse visiting, gin drinking, hothousing, dragon mothers. My Max is an original.
So my job this week is to find Max some post-16 courses in catering and hospitality. Max doesn’t ask for very much so when he said:
“Mummy, do you think I can grow up to be a chef one day?”
...Well damn it, yes you can. The beautiful thing about mums of disabled kids, and I might just be talking about myself here, is that we’re so wracked with internal guilt that we will literally move planets to find our kids some happiness. Because it’s not much to ask for really.
I just have to fight a whole lot harder to build my son a future. Pretty much everyone else just takes it for granted, I’m glad they don’t know what this feels like. And now to begin the great Google. It may be a very late night indeed.