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 Sam’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 Sam 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 Sam 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 Sam 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 Eli went with Sam 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. Sam 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 Eli will be allowed on it. There are some mutterings about insurance (or lack of it) for Eli. As always, I eventually call my contact, Ms A, at the private transport provider who are sub-contracted by our local council to take Sam 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 Sam to school will be there on Monday morning, ready to take Eli and Sam.

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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 Sam, and with enthusiasm for Eli joining them. People like Ms A are the ones who brighten my days.

And so off they went! Sam went on his own some days, and Eli 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 Eli couldn’t clearly hear, said what a great brother he was. That he’d been friendly to everyone and helpful to Sam, 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 Sam’s went to the same playscheme each day but for some unfathomable reason was not allowed to travel on the bus with him. Sam’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 Eli and Sam 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 Sam 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. Sam said that he enjoyed it, and Eli asked if he can go every day with Sam next year. I hope so, my boy, I hope so.

 

 

Changing Places

As Sam gets older it seems to me that his life is a challenge of inclusion. As he get bigger and heavier, the places and buildings he can go and the types of transport he can use are restricted to those that are accessible by wheelchair. As the gap between his way of communicating and his talking peers widens, his ability to communicate with those around him becomes harder. Since he attends a special needs school, the amount of time he spends with non-disabled kids reduces.

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Sam is now pretty heavy, and quite long, and so it is becoming increasingly difficult for us to compensate for the lack of accessibility around us, a trend hastened by me injuring my back earlier this year. Where we would – without giving it a lot of thought – lift Sam, or his wheelchair, up to where he needed to be, or to see something otherwise obscured, we do so less often now. He is now often hoisted at home (a ceiling mounted hoist lifts him in a sling from, for example, his wheelchair to his bed) rather than us lifting him, something I find emotionally tricky.

Add in two other children, and the odd vomit or grumpy mood, and it can feel like it’s easier for us all to stay at home. We have to constantly nudge at the boundaries of what is expected of us and what we expect of ourselves – partly because it’s the right thing to do, partly because otherwise we all get unbelievably bored and tetchy.

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Last week we had left the car near Sam’s school in central London and so rather than one of us going to get it while the other stayed at home with kids, we went on a whole-family trip to retrieve it. Our local train station has lifts, as does a station reasonably close to his school. We looked like a small parade as we pushed a wheelchair and a buggy, carried a car seat, and Eli dropped Lego on the floor. We walked through the City, past St Pauls Cathedral, got some lunch and hung out in a playground, and then drove home. It was fun! All of the kids liked being on the train, with each other. We liked doing it with all of them. We should do it more often!

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(Not possible to get a good photo of all of our kids)

But one of the things that really restricts where we can go as a family, and for how long, is whether there is a place to change Sam. I am going to attempt to talk about this clearly, without compromising Sam’s right to privacy.

Sam wears a pad which needs to be changed regularly. At home, we have ceiling hoists and two changing plinths (like a high padded bench) to do this on. We need to be able to lift him out of his wheelchair and lie him on a surface that will accommodate his full height. There is a name for places that have these facilities in public buildings: Changing Places. It’s not rocket science – they are places where people like Sam can get changed.

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(photo of one of the changing benches in our house, folded up)

Changing Places are not disabled toilets (though there are facilities that combine both functions). Disabled loos are just slightly larger-than-normal lavatories. We have used them, often, to change Sam in the absence of anywhere more suitable. This involves us laying the mat on the floor of the loo and lifting a heavy child down on to the mat. No-one wants to lie on the floor of a public toilet, so I think it’s obvious why this isn’t at all acceptable.

Changing Places are also not baby change facilities. Sam is the height of an average seven year old. He will not fit on a babychange unit (though we did this for years in the absence of anything more suitable).

Changing Places came about because a campaigning organisation with the same name has relentlessly lobbied businesses and public institutions to install appropriate facilities for disabled people. They have had some success – we can now plan our drive to Cornwall using their website, which means Sam can be changed appropriately in two service stations en route.

There are five Changing Places in central London. Clearly that’s better than none, which was the case a few years ago, but it makes it pretty unlikely that we are near one on any given outing. Which means our outings can only last a few hours. Can you imagine if you were told that, in the middle of a capital city, your nearest loo was over a mile away? I’ve had three kids and drink a lot of tea so that would spell absolute disaster for me.

And it’s not just public buildings or businesses that are failing here, it’s also hospitals. Our local hospital, where Sam has appointments at least four times a year, often more, has nowhere for Sam to be changed – awkward when waiting times mean we are there for two hours, and then will have an hour journey to take Sam to school. Nor indeed any ability to weigh him beyond me carrying him while standing on some scales and then the nurse subtracting my weight. I did this for years but it is no longer feasible. Nor do they have any way of measuring his height, and therefore calculating his BMI. This is pretty core information that would be really helpful in, say, a discussion with a gastroenterologist.

The social model of disability tells us that disabled people are disabled more by their environment than by their own condition. True inclusion means creating an environment that allows disabled people to participate in society: we took a family trip past St Pauls Cathedral because two stations have been adapted to allow Sam in his wheelchair to travel on the train. The length of our trip is then determined by whether we can change him. It’s not Sam’s disability that’s the problem – it’s the lack of appropriate facilities.

I have no particular desire to discuss the toileting habits of any of my children, but to not talk about what Sam, and kids and adults like him, need in order to be comfortable is to perpetuate the current situation which encourages exclusion. Providing appropriate facilities for disabled people is intrinsically entwined with avoiding isolation. It’s not a question of optional luxury, it’s an issue of basic dignity and social justice.

 

Living in Camberwell

I wrote this article for a local publication and so it is pretty specific to our particular corner of south London: it first appeared in the Autumn 2014 edition of Camberwell Quarterly, the magazine of the Camberwell Society.

Living in Camberwell with a disabled child

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My son Sam will soon be five years old and has lived in Camberwell and Peckham his whole life. Sam is bright, loves books and is developing freckles in the summer sun. He also has cerebral palsy which severely affects his ability to sit, stand, eat, drink and walk.

Following his birth in Camberwell during a winter of snow, Sam lived in three different houses in SE5 and then, last year, the big move to SE15 – so we have spent his life pushing him around Camberwell and learning how to navigate this bit of London with a disabled child.

We have been lucky to live so close to Sunshine House, on Camberwell Church Street. This beautiful building is exactly what a child like Sam needs: inspiring architecture, totally accessible for a buggy or wheelchair, stuffed full of dedicated therapists and useful doctors. I spent many hours enjoying the walk down Camberwell Grove and through the churchyard, then regretting the weight of a laden buggy as I huffed all the way back up to the top of the hill.

We were also fortunate in Sam’s first year to stumble across Camberwell Grove Early Years Centre. Parents of disabled children frequently struggle to find adequate childcare for their complicated kids, but the manager of this nursery welcomed Sam with enthusiasm and I was able to return to work. Sam has been going there for almost four years now and his younger brother will start shortly. Collecting Sam when he is playing in the lovely, huge garden with children he’s known for years is something to treasure.

In terms of activities for Sam, Camberwell is poorly served. Now Sam is four and uses a wheelchair, I cannot think of any local playgrounds that have any equipment that Sam can enjoy. He loves books, but he can’t get down the stairs to the children’s section of Camberwell Library. So we often travel to the Horniman Museum which puts on wonderful story telling sessions on Sundays. Sam is usually the child laughing loudest and longest at an elaborate tale of how the lion got his roar.

Transport is a mixed bag. The new ramp and lifts at Denmark Hill station are a great development, and it is entirely our fault that we moved one month after they were completed. Our nearest station is now Peckham Rye which has a labyrinth of stairways which make it pretty much inaccessible for a wheelchair user.

As a result, it’s usually most convenient for us to drive. Unfortunately Southwark has a hardline policy on blue badge holders, meaning that – unlike in Lambeth – we can’t park in resident permit bays. Given that Camberwell is increasingly dominated by controlled parking zones, this often means we circle the area looking for an elusive disabled bay.

We work hard to include Sam in as many aspects of local life as he can be, but it’s complicated. It’s easy for disabled children and their families to become isolated because they struggle to be included in ‘normal’ activities. There is a real need for us all to fight for more inclusion for disabled people.

In the meantime, the world gets better by small acts of kindness and friendship. We appreciate and enjoy Sam having a place in the communities of Camberwell and Peckham, where mothers talk to him in the playground and shopkeepers return his smile.

School bus

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Sam is now at school full time. He goes to the special primary school in our borough so we have to drive him there which takes 20-30mins.

Most children who go to the school get the school bus. I spoke to various people about this before the summer and was given the impression that the school bus is all or nothing – every morning and afternoon or not at all. I was grumpy about it on a day when I happened to be interviewed for a film about parenting children with special educational needs. I grumbled at length about the inflexibility of such systems.

I applied for transport assistance, thinking that I’d see what happened and we didn’t have to take it if we didn’t want to. I was told we could pretend we had physio every afternoon so Sam couldn’t get the bus. A woman who works for the transport bit of the council then came to visit us and assess Sam’s needs. She was really friendly, confirmed Sam would be offered a place on the bus due to his disability, and said it was totally up to us how often and when he used it. All of the scare stories about the inflexibility of the bus were totally unfounded!

We then couldn’t decide what to do because Sam is so young and time to fit in his breakfast in the morning is already limited (the bus arrives half an hour earlier than if I drive him straight there). I enjoyed taking and collecting him when he had gone to school 2.5 days a week last year and it meant I got to know the staff and kids at the school. But doing the school run for an hour every morning and afternoon five days a week is a lot of time – time that could be spent with my other child, or working, or making a dent on the Sam-admin/washing/massive piles of lego in my sitting room.

We came up with a complicated rota of Sam getting the bus on various mornings and afternoons after an initial few weeks of me driving him. Everyone nodded when I told them, looking kindly at me like I was nuts. We realised that no-one, including us and more importantly Sam, would be able to keep track, so we settled on Sam getting the bus each morning and being collected every afternoon.

On the first morning, we were ready at the front window looking for the bus – we had been given strict instructions that the bus would wait for 3 minutes from our allotted pick-up time but no more. We’d told Sam what was happening and he was totally fine. He was smiley and relaxed.

While waiting, James and I had some small misunderstanding about something and I burst in to tears. I found the whole thing so emotional – my little boy going all on his own on the bus with people he’d never met before. And Sam’s school bus is, by definition, full of disabled children. Happy, friendly, lovely kids, but there’s no getting away from your child being disabled in that context.

Non-disabled four year olds don’t get buses to school, they potter round the corner to the local primary. In fact hardly any British city kids get organised buses to school; there is no culture of school buses like I have seen in American films. (Aside: construction companies in Qatar buy old American school buses, so when we lived in Doha you would often be waiting at traffic lights next to big yellow buses with SPRINGTOWN HIGH SCHOOL written on the side, which were full of adult migrant labourers being driven to work.)

Then the bus arrived and we met Omar, the driver. Sam got lifted up on a platform on the back of a bus, and was all smiles as his wheelchair was secured. Then he was gone. Of course I called the school mid-morning and they said he had arrived happy.

That routine lasted three days.

On the fourth day we repeated everything as normal, Sam smiled at Omar, and then his bottom lip appeared in direct correlation to the height of the wheelchair lift. Sam’s bottom lip is legendary – he has used it to great effect ever since he was a little baby. By the time he was in the bus he was crying and wouldn’t open his eyes to say goodbye to me. ‘Sam’s very sad’, said Eli.

So now each morning Sam is happy while we all wait for the bus. The bus arrives and Sam smiles at Omar. Then he sticks his bottom lip out as he gets in to the bus and cries as it leaves. Unless the lady who accompanies the children sings to him, in which case he allows himself to open his eyes a tiny bit and marginally retract his lip. As soon as she stops, off he goes again with the tears. It’s all heartbreaking.

I keep asking the bus staff how he was during the journey and each day they say he stopped crying as soon as they turned the corner. Every day each child is greeted by the headteacher or deputy head on their way in to school, and every morning they say he was happy. We collect him each afternoon and his class teacher says he was cheerful.

So I guess he’s okay and we all carry on until he gets used to the idea of leaving us on the bus. But in the meantime my heartstrings are taut and in danger of snapping.