Summer skateparks

It is an odd summer. The forced homeschooling of the spring and early summer kind of bled into the summer break, though of course we have now entirely given up on any formal education. There aren’t any of the usual shows or activities running and we aren’t going on a family holiday. The only rhythm to our weeks is that Ben is going to his school playscheme two days a week, which is the same routine as the two days a week he spent at school in early July. Siblings aren’t allowed at the playscheme this year.

Quite a lot of days are spent with the kids doing separate things, with different people, as we try to do things they will each enjoy whilst also finding time to work. It’s not ideal, but it’s inevitable. I feel I have this fantasy version of our days where we do activities together like an idyllic happy, inclusive family but the reality is more like James is working, I’m at a park with Max and Molly, while a carer (the backbone of a successful summer) collects Ben from school.

I think this is probably what always happened, but I’m more aware of it because we’re coming out of shielding Ben where we got used to Ben staying at home while the rest of us occasionally left the house, and I worry it’s the thin end of a wedge – of getting used to not including Ben (even if it’s sometimes for good reasons). I worry that Max and Molly won’t have enough shared experiences with Ben, that Ben will feel left out. But we do do things together, and particularly at the weekend. Mostly parks, with fresh air and easier social distancing. A few weeks ago we went to a skatepark where James rolled Ben up and down the ramps while Max and Molly scooted around, tumbling off occasionally. Ben loves going up steep ramps, tipping his chair right back, and as James pushed him round we could hear Ben squealing in delight.

This week Max wanted to go to a specific skatepark where there is nothing for Ben to do (playgrounds being particularly unwelcoming for wheelchair users in general) and my ankle is not yet up to pushing him up steep ramps while surrounded by skateboarders. I explained this to Ben. ‘Do you want to come with us?’ I asked him and he, quite understandably, said no. Molly wanted to stay with Ben so I took Max alone. I read my book while he skated and it was actually relaxing having only one child to supervise.

Max ended up becoming friends with another boy at the park and I listened to them talking. The other boy was describing his older brother. ‘My older brother is 10,’ Max said. ‘My dad pushes his wheelchair up the ramps when we go to the skatepark all together.’

‘Oh cool,’ the boy replied.

Later that day I was giving Molly a bath while Ben was in his room, just through the open door, with his eyegaze device mounted to this chair. I was washing Molly and not looking at what Ben was doing when I heard his device talking, loudly. Ben had selected the page on his device that has pre-programmed phrases and said ‘Alexa, can you smell that?’

The smart speaker lit up and replied, loudly, ‘Oh my giddy aunt, somebody open a window.’ Molly, Ben and Max, who had been lying on his bed, all collapsed in hysterics. 

Maybe it’s not about the quantity of time the kids spend together, but what we do with it, and skate parks and fart jokes are the bits they’ll remember?

Playscheme

We survived the summer holidays! Nothing brings home the fact you have three children like having them all at home for six weeks . It is inevitably chaotic and puts all other meaningful activity on the backburner, but it’s also fun. We don’t all have to be up and out first thing in the morning, remembering school forms and PE kits. We can go to new places and hang around in the garden.

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The secret to communal happiness for us (me) is to have some structured activities, ideally not involving me, lined up between the museum outings and home-based craft projects. We are fortunate that Ben’s school runs a two week playscheme in the summer, and even more fortunate that we have funding for him to attend for one of those weeks. We pay for him to go for a second week.

Running a playscheme for kids like Ben is not straightforward – you need a suitable building, loads of staff with the right expertise. They are expensive because the ratio of staff to children is high, which means either schools or councils have to subsidise them or they are prohibitively expensive for parents. As a parent, it is difficult to find any holiday activities for our disabled child where we feel confident leaving him in a new place with unfamiliar people. I will only send Ben to this playscheme because it is at his school, staffed by people who work there so know him well – these are people who are used to feeding him through his tube and can communicate with him. It’s not the closest holiday scheme but it is the most appropriate.

So for the last few school holidays Ben has spent a week at this playscheme, which is exactly the kind of age appropriate, fun holiday activity I’m into. What I’m even more keen on is the typical experience of two brothers who are a couple of years apart in age being able to do the same holiday things, at the same time, and that is exactly what this playscheme offers. They welcome non-disabled siblings so this year Max went with Ben for four days.

Hurrah, we all shout! Except (and isn’t there always an ‘except’) we need to work out how to get them to and from a playscheme that is five miles from our house each day. Ben is theoretically provided with transport to do the morning journey for one week, but all of my emails to confirm this have gone unanswered and in the week before the playscheme, I still have no confirmation whether the bus is coming and if Max will be allowed on it. There are some mutterings about insurance (or lack of it) for Max. As always, I eventually call my contact, Ms A, at the private transport provider who are sub-contracted by our local council to take Ben to and from school during the term. She works her magic, and calls me back the following day to say she has confirmed the crew that usually take Ben to school will be there on Monday morning, ready to take Max and Ben.

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I cannot overplay the value of Ms A. After weeks of me emailing and calling social services and the school transport service (as I do in the weeks leading up to every playscheme) and getting precisely nowhere, she smooths the path and makes it work with a driver and escort who are familiar to Ben, and with enthusiasm for Max joining them. People like Ms A are the ones who brighten my days.

And so off they went! Ben went on his own some days, and Max joined him on others. They swam in the hydrotherapy pool and did some DJing. They made spiderman masks and puzzles.

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One day I collected them and a young woman was accompanying the boys down the corridor towards me. I could see they were relaxed and happy. She introduced herself and then, in a low voice so Max couldn’t clearly hear, said what a great brother he was. That he’d been friendly to everyone and helpful to Ben, that he’d made some funny jokes. She said her sister had gone to the school and that was how she had got into helping at playscheme. She seemed like exactly the kind of person I want my kids to hang out with.

This is unusual – it is not standard to have access to a playscheme where you feel really confident people understand and can care for your child, where they will be happy and safe. It is rare for non-disabled siblings to be allowed to join in with these kinds of activities. It is unusual to get funding for a week which includes help with transport to get them there. In fact, in a stunning display of bureaucratic madness, a classmate and friend of Ben’s went to the same playscheme each day but for some unfathomable reason was not allowed to travel on the bus with him. Ben’s bus went past the end of his road each morning without being allowed to pick him up, despite there being room. It was the same bus and crew that normally picks him up for school every morning. I despair.

After two weeks of Max and Ben spending time doing all of the fun the playscheme had to offer, we were ready to spend more time at home. I geared up to organise trips. We did loads of interesting things, but I worked hard. It takes thought and planning to find activities that work for a disabled eight year old, a six and a two year old. Holidays are fun but intense, which is exactly why a playscheme like ours is so valuable.

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There is a temptation to see such playschemes as a luxury but there is literally no other holiday scheme, club or session that Ben can go to without me or a carer. It is entirely appropriate for an eight year old to spend parts of his holiday without his mum, and to have the opportunity to do different things. It’s a crucial part of growing up.

From my perspective it’s brilliant. Ben said that he enjoyed it, and Max asked if he can go every day with Ben next year. I hope so, my boy, I hope so.

 

 

Filling the summer holiday

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. *

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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.

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(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.