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.

 

 

Ben is 7!

Ben is seven! We celebrated with, amongst other things, an egg-free chocolate cake that I whizzed up in our blender and gave to Ben through his feeding tube.

 

With every passing year I sound a bit more like my mum: “I can’t believe you’re seven years old! I remember when you were just a baby!” But it’s true – I am genuinely surprised that we have been parents for seven years and that Ben is so big and tall.

As with all recent birthdays, James made a Ben-themed video of the past year and we watched it with our family, projected on to the wall. I would recommend this as a way not so much of celebrating the child’s birthday, though Ben and Max enjoy seeing themselves, but more as a way of congratulating oneself on another year of parenting. It is heartening to see how much children have changed and grown over the year, how much you have done with them, and ultimately how justified you are in feeling so tired.

The other thing that we realise when we (James) make these videos is that there is always way too much material. We have done too much fun stuff and taken too many photos and videos to fit into one short film. It makes obvious that Ben is living a full life, with variety and fun, surrounded by loving family.

 

 

Just after Ben’s birthday he had an appointment at our local rehabilitation centre where wheelchair services, assistive technology and other helpful services are based. There are always all sorts of disabled people coming in and out for appointments. I was sitting in reception with Ben and Molly, waiting to be called. Molly was a bit grumpy because she hadn’t yet had her morning bottle of milk, Ben was happy watching a screen showing footage from four security cameras. A lady in a wheelchair was pushed close to us (and I have written that in the passive deliberately, because the person pushing didn’t ask her where she wanted to wait). She was an older lady, I would guess in her seventies, immaculately dressed and made up. She smiled at us and after a few moments said (as is common):

“You’ve got your hands full!”

I smiled and we had a brief chat about how old the kids were, how cute Molly was, how much she liked milk. Then the lady asked, as she looked at Ben:

“Is he able to go to school?”

“Of course,” I said. “He goes to a brilliant school which he loves, don’t you Ben. We’re just here for an appointment.”

I could see the pity-look appearing so I was even more positive than normal about both Ben and his school. But as she was leaving she said:

“It’s so hard for these handicapped children. So hard for their families. I feel so sorry for them.”

It was one of those times when I felt like I didn’t have the words to be able to explain to her what our world is like, what Ben’s life is like, how we (try to) treat him. I have no idea how or why she uses a wheelchair, or how old she was when she first used it, but clearly she has lived a different experience.

It’s impossible in passing conversations like this to say all I want to, but later I felt so sad that she assumed Ben didn’t go to school, that his life is somehow unbearably hard, that it’s okay to talk about him like that right in front of him. Clearly being disabled in some way doesn’t automatically educate you in how to treat disabled kids in 2016 (or 2017).

I don’t want to minimise Ben’s challenges – loads of things are tough for him, almost nothing comes easily, and much is really unfair. And as a family we sometimes struggle when Ben’s disability makes things more complicated for all of us. But right now, as a seven year old boy, Ben is having a good life most of the time (and really, which child is having a good life all of the time? I mean every kid has to tidy up or eat Brussels sprouts or go home some of the time). He has loads of fun. He laughs most days. He is loved. He is learning. He is thriving.

By way of illustration, between his sixth and seventh birthdays Ben:

  • Had a baby sister: tolerated Molly’s wailing, put up with a third of our attention rather than half, learnt to deal with her grabbing onto his legs and pulling his hair. And then got a new baby cousin, Ralph, who also sometimes likes a bit of a wail.

 

  • Learnt to cycle his trike on his own: whizzed round in circles, racing Max and being unbelievably pleased with himself. He is still working on learning how to steer.

 

  • Made really noticeable progress with communication: starting to eyepoint using his communication book to tell us things, more reliably telling us yes and no.
  • Made huge progress on using his eyegaze computer: using it almost every day, knowing exactly what he wants to do, reliably choosing stories and then navigating through them like a pro, using communication software to create messages that were totally appropriate to the moment.
  • Went on holiday to Cornwall and France: first flight for three years, loads of swimming and beach time, hanging out with family and friends, getting tanned (and on one unfortunate occasion burned), getting a new passport.

 

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  • So many jokes with Max. So many lovely moments between these two boys.

 

 

  • Started staying at a children’s hospice for the occasional night, didn’t seem to be traumatised.
  • Moved house, again. Visited the building site to review progress and try out his new lift. Before he is eight he should have managed yet another move, his sixth since he was born.

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  • Began to be hoisted (rather than manually lifted) for most transfers between chairs and beds: coped much better with this than his mum.
  • Listened to lots and lots of audiobooks: his bluetooth speaker and ipod have become essentials wherever Ben goes, and there’s therefore been less screen time, developed a love for the books of David Walliams (except the highly emotional ending of Gangsta Granny) and late in the year Harry Potter.
  • Finished his first year at a new school: totally smashed it, participated in a whole school play in his walker, another year of loving learning, fascinated by the Great Fire of London.

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  • Was increasingly contented: Ben has spent the last year less fractious and generally happier. We spend less time flicking though films to find the one he is happy to watch, less energy trying to entertain him in public places so we can finish our lunch. This is probably connected to us having more (paid) help, and Ben getting older and more mature, helped – we think – by his surgery in 2015. As long as we explain what’s what is going on or is about to happen, Ben is noticeably more able to deal with unfamiliar or demanding environments. Long may it continue.

As we celebrate another year of Ben being our son, I am so very proud of this boy (and still so very sad that seven years ago he was still in hospital). He is such a joy to us all, so filled with patience and humour and determination. Happy New Year everyone – let’s all hope we come across more Bens, less pity and more positivity in 2017.

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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.

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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.