I didn’t realise quite what a difference it would make to our lives once Ben was at school. We’re now coming to the end of his first year of full-time school, and it’s been bloody marvellous. The thing about having a very small disabled child, who’s at home a lot, is that you are responsible for every almost every aspect of their lives; what they’re doing, who they’re doing it with, what they’re learning (or not), how much variety they have in their days. Even with the aspects that aren’t entirely down to you, you are still the one providing taxi services or co-ordinating appointments, having conversations and arranging outings. It’s a lot of pressure and hard not to take things personally.
If you are lucky enough to get your child into a really good school (via interaction with your local Special Educational Needs department, which is bound to be stressful), a significant chunk of responsibility is lifted from your shoulders and you are handed back whole swathes of time. 5-6 hours a day to be precise.
Of course there’s still a lot to do and arrange. And there are school holidays to fill. But every day during term time, your child is with people who are teaching them, playing with them, taking them to go swimming and to other interesting places.
Ben’s school celebrated the election of a new parliament in May by going on a school trip to Parliament for all of the children who are part of the MOVE programme, which is all about integrating physical tasks, goals and skills in to the school day and is designed to involve the expertise of everyone who works with the children – parents, teachers, therapists, classroom assistants and others.
Ben’s MOVE goals focus on him sitting unsupported and standing for short periods of time. Being part of the programme means practicing these skills every day at various points throughout the day. The idea is to go beyond just working on this in designated physiotherapy sessions. It a great idea, and Ben’s ability to sit with less support has improved noticeably over the last 6-9 months.
The outing to Westminster was to celebrate the achievements of all of these kids, and where better to take them for a treat than to the heart of power? The place that, for a group of eleven disabled children, ultimately determines so much of their lives, from education and transport, to benefits and healthcare.
If I decided to take Ben on a trip to Westminster, it would be a big deal and I would spend a lot of time planning and fretting. The idea of taking eleven children in wheelchairs, eleven staff and all of the necessary bags on the tube, in order to make an appointment time with an important person would send me into some kind of collapse. But that’s what the school did – cheerfully and enthusiastically. Presumably somebody was planning and worrying, but they gave the impression of easy calm. They even, in the spirit of MOVE, got all of the kids out of their wheelchairs on the tube to practise sitting on seats. Brilliant! Nuts!
I met the party at the Houses of Parliament and we went though security – all lovely slopey ramps, friendly frisking and smiles for the army of wheelchairs. We went through to New Palace Yard where we were met by Neil Coyle, the very newly-elected MP in whose constituency Ben’s school sits. He’d only had a couple of days to familiarise himself with the workings of the Houses of Parliament but he got us in, and happily chatted to us all, kids included. You could not meet a more welcoming MP.
There’s a video here.
I love the idea of politicians and their colleagues coming across these kids as they walk through the Palace of Westminster. I got by far the best bit of an ambitious day – just swanning in for the photos in front of Big Ben. What a luxury for me – none of the anxiety about logistics or whether Ben would be happy, and all of the fun of the adventure. But mainly, lucky Ben!
(Surprisingly hard to fit my large head, Ben’s wobbly head and Big Ben in a selfie.)