It feels like an age ago, but in July and August Ben had a month with no school, less structure, and a mother nervous about how to fill all the time. My perceived ideal for school holidays is a mixture of laziness, constructive activities and some degree of chaos, but without school there are a lot of hours to fill in a month and finding a variety of things to do that Ben is interested in can be tricky.

In our borough there is no holiday provision for disabled children. Nothing at all. There are occasional misty-eyed mentions of a playscheme that used to operate at Ben’s old school but that got shut down. There is much talk about the Local Offer website; as part of new legislation in 2014 every council has to publish details of what is available locally for children with special educational needs and disabilities– schools, clubs, facilities. This is a brilliant idea – much of the good stuff in terms of provision for disabled kids is discovered through chats with other parents or serendipitous connections. The Local Offer should make clear what clubs and places there are in your local area, and which of them might suit your particular child.

I went to some consultation events about the Local Offer – our local authority were trying to work out what information parents, carers and young people actually wanted. The question I kept asking then, and continue to ask now, is what happens if all the Local Offer shows for people like me is that, in terms of leisure and holiday activities, there is NOTHING suitable for my child? And lo, here we find ourselves.

One way parents may fill a month of school holidays (or indeed weekends) is to take their kids to holidays schemes, football camps or drama groups. I hadn’t been able to find anything like this for Ben. I tried asking our local social services team (the team that helps Children with Disabilities) and they sent me a brochure which confirmed there wasn’t much on offer.

Through parents of kids similar to Ben I heard about a holiday scheme in a neighbouring borough that might be suitable. I got in touch with them directly, and they said they would be happy for Ben to attend. 10 days before it started our local borough agreed to fund Ben’s place. We decided he would go with his usual carer – partly because it wasn’t clear until quite late whether there would be funding for him to be looked after by their staff, partly because it’s the first time Ben has gone to something like this and I was nervous about leaving him with people he didn’t know!

So, following some communication about Ben’s needs and a phone call with the head of the service, Ben spent four days at a Whippersnappers playscheme. It was based in a special needs school, with lots of disabled kids, children with various special needs and some with no disability at all, and staff used to kids like Ben. He loved it. It was a warm fuzz of inclusion, fun and variety. *

The amount of stuff they packed in to each day was astonishing – singing, drumming, massage, stories, craft. They went to the theatre and to Kew Gardens. Ben came home with stuff he’d made, including a cookie as big as his own head which he was particularly pleased with. The staff at Whippersnappers knew what they were doing and had put huge thought in to how to fill days with fun stuff.

(Photo above from Facebook)

Ben finds unfamiliar places difficult but he was quickly comfortable at Whippersnappers. He was more relaxed than we expected (so I’m told) – to the extent that he fell asleep mid-massage – and really happy when he got home.

A couple of weeks later he got a package through the post. He was excited. We opened it up to find a t-shirt printed as part of the playscheme that has his name on it.

This has been a brilliant discovery. Just two days a week at a playscheme like this made a huge difference to the first couple of weeks of the holidays. If Ben has had a busy, stimulating, fun day out with other kids I can feel less guilty about the next day involving more TV watching that is ideal, or that Ben’s day is largely spent discussing new wheelchairs and hoists.

It’s good for him to go off and do fun stuff without me and come home smeared in paint, so that when we spend most of the other days together we aren’t bored of each other. I love our house filling up with the fruits of these labours – collages and pictures and a wheelchair covered in glitter on the floor.

Why it came down to a chance conversation with a friend for us to find something so perfectly suited to Ben continues to be a mystery, and it is still unclear whether our borough intends to do anything to provide for the kids in their borough who otherwise have no holiday activities to go to, or whether the social work team can do anything except to wait for me to send emails asking for funding for activities that I have found myself.

I feel like I’m constantly hoping for a level of proactivity and communication which never appears. It would be lovely if someone came to us offering something helpful for once, rather than waiting for me to do all the legwork. All of the needs so carefully discussed and worked on by Ben’s school during term-time do not disappear for the six weeks of the summer holiday, and Whippersnappers have proven that it’s possible to fill that gap with fun stuff.

It’s not good enough to build websites to list what’s not suitable, not accessible and not welcoming to disabled kids and ignore them for six weeks. The kids, and their families, deserve better.

* Yes, in the photo of Ben and James with the massive cookie it says ‘willy’ and ‘bum’ on the wall behind. This is what happens if you ask a 3 year old to help you label body parts.