I spent last Saturday at an Autism Awareness coffee morning at my second child’s school. A Special School. It was chilly but there was cake and coffee, friendship and I got the chance to be a bit incompetent staffing the raffle – proceeds going to a school trip to Belgium – stall whilst the young adults got a warm drink.
They are pretty darned good at this kind of thing – both the fundraising and the awareness raising. They have to be, Special Schools are expensive – the pupil to teacher ratio is small, there’s a ton of specialist equipment needed and SEN (indeed all LD provision) doesn’t appear at the top of most people’s agenda’s. I was speaking to an old friend who (pre-retirement) was a psychiatric nurse who joked that “we knew we were way down the list of priorities but we always knew that LD was below us.” It made me laugh – there’s a gallows humour around this stuff for those involved.
Anyway, I mention the above only because of a conversation my ex (the mother of my children) who is a parent governor at the school had with the parent of a newly joined child. It was about the fight she (t’other woman) had had to be listened to in regard of getting her child the educational support that was needed. Also, because there was an angry joy in that and a strained tiredness around her eyes.
I’ve seen that tiredness again and again over the last six months. I’ve seen less angry joy. I’ve seen that look because in researching ‘The Netherlands’ I’ve sat down and spoken to over 200 parents of learning disabled, neurodivergent and mentally ill people.
I’ve also spoken to paediatricians, midwives, nurses, councillors, head teachers, social services staff, LEA staff and more parents who have come to see the show thus far.
Of those parents, in Yorkshire, Greater Manchester, the West Midlands, the South West, all but one said that this was the first time that they had been asked how they were. Which is why, I guess, I made this show – so that angry joy, that tiredness, that fierce love was born witness to, was placed.
Because it comes at some cost. Cost in tiredness caused by what can seem like a constant fight against people who either don’t really understand particular need or are SO constrained by funding constraints that they construct bizarre cut-off points (not difficult enough for example), cost in personal relationships (one head teacher in the NE told me that 90% of the family’s in her school were single parent), cost in terms of mental and physical health, cost in terms of sense of self – no-one asks you how you are.
I was also, and more importantly, struck by just how much love and pride and generosity there was in that school on Saturday and during those 200+ conversations over coffee and cake. And it’s that that keeps people going.
They don’t all keep going – those families on the NE for example – and I wanted to explore that too. And why it is men who mostly don’t.
The feedback so far has been astounding, and not just from parents and professionals – below is from a 20yr old student from the NE
I keep repeating this, though, The Netherlands is not a show about LD, it’s a show about being a parent. It’s just that being the parent of a LD child somehow writes that experience larger.