Sending Sam down a zipwire

Over the Easter holidays we took Sam away for an activity weekend. We went to Istanbul for a long weekend with Eli in March, so now it was Sam’s turn to get uninterrupted time with his parents.

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I did not grow up with activity holidays. My family holidays involved weeks in the British countryside going on long walks, or staying on a smallholding in Spain and swimming in a pond full of frogs. Our dad would occasionally take us to the local swimming pool but we were more likely to be taken round Ronda bullring for the twentieth time than to be put in a canoe. Our meals involved omelettes and family arguments. Not once did we stay anywhere fully catered.

The Calvert Trust Exmoor enables people with various disabilities to experience outdoor activities that might be complicated or impossible otherwise. We had heard great things about it, but I was a bit nervous. Mainly about how Sam would feel about it all, but also because activity centres remind me of school trips. All of the schedules and rules and mealtimes make me feel like I’m 11 years old again, and when we arrived I actually felt a bit homesick, even though I was there with my husband and child, and I’m an adult with a car that I can drive away if I really want to. I had a small weep about leaving Eli behind, and then cracked in to the red wine.

We were there for a long weekend. And what a weekend it was – undoubtedly one of the most intense of recent memory.

It’s quite hard to summarise how it went. It could be written one of two ways:

  1. Brilliant adventure! New experiences!

We were told our timetable when we arrived. We were worried about how Sam would deal with any of the activities, but particularly the canoe trip – it would clearly mean an extended period of time with no ipad or books or distraction beyond calm water. And he wouldn’t be able to sit in a supportive chair like normal. What were we going to do when he flipped out, in the middle of a lake on a boat we were sharing with other people?

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In fact, Sam was great. He was patient as we got ready for the trip, sat perfectly cross-legged in the boat and lasted almost and hour and a half before he got bored.

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The next day he was attached to the ceiling of a sports hall in a harness and swung around. As far as we are aware that was the first time he’d done that too.

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Then in the afternoon, we pushed him down a zipwire at high speed. Twice. He reacted to this extreme sport by closing his eyes for the entire thing and giving us a wry smile. He looked more relaxed than ever.

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On both days he went swimming and hung out in the Jacuzzi, where he was relaxed and happy. We walked round a lake, sat by a fire, and read a lot of stories.

Our instructor was friendly and accommodating. He was skilled and experienced so knew how Sam could be supported to do each activity, and quickly worked out if Sam was getting impatient so made sure he went first when possible. He fits in to the category of people we come across pretty often who specialise in maximising the lives of disabled children and do it really well.

In the two days of activities, Sam took part in AND ENJOYED canoeing, swinging from a ceiling and zooming down a zipwire. He had never done any of these things before. If we achieved just one of those things in a normal weekend we would be inordinately pleased with ourselves. We’d spend the rest of the day watching the Paddington Bear film and congratulating ourselves on going canoeing. Canoeing!

  1. Really, extraordinarily hard work

Between all of these amazing activities which Sam enjoyed, we were working incredibly hard to keep the show on the road. Sam was a bit tense almost all the time in such an unfamiliar environment. We were in a group for each activity so there was inevitably some waiting around for our turn. As the weekend went on, we found we couldn’t wait for longer than a couple of minutes before he was getting grumpy. It also became apparent that Sam hates wearing a helmet.

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James and I were working overtime to keep Sam chirpy in between the action. Our timetable was packed with way more stuff that we would usually do with him on one day. Through a combination of fractiousness and tiredness, he didn’t enjoy a forest walk, or a challenge course, or crate stacking. He cried often and whinged a lot. We didn’t even try abseiling – we just stayed in our room listening to audiobooks and napped.

Sam was almost the youngest child there (most of the visitors are adults) so it’s not surprising that he was a bit overwhelmed. I was a bit thrown at times!

Meanwhile, all of our meals were provided but that didn’t include Sam’s gastrostomy feeds, and we didn’t have a kitchen. So we were washing syringes and cleaning the blender in our en-suite bathroom, storing his food in a mini-fridge, preparing medicines on a windowsill. It worked, but nothing makes you appreciate your own kitchen like not being in it.

 

When I was thinking about visiting The Calvert Trust, a friend told me it was the only place she had ever been where disabled and able-bodied people were viewed equally. She said, if only the rest of the world were like The Calvert Trust it would be a much better place. And she is totally right – we have never been anywhere where people (including James and I) assume Sam will be able to take part in every activity, and someone will have thought carefully about exactly how to achieve that. It is inclusive – both in terms of people participating in activities, and because it brings together a group of disabled and non-disabled people to get to know each other, talk to one another and eat together.

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But… I didn’t anticipate that being in a place with lots of disabled people, would make me see Sam as more disabled, rather than less. Even in a group of disabled people, Sam is noticeably less able than most. That is what it is – he’s brilliant, and cute, and clever, but his body just doesn’t work very well.

So by the time we got back to London, James and I needed a holiday to recover from the holiday. But instead James went back to work that afternoon, we decided to move house next month, and embarked on a series of hospital appointments with Sam. We are glad we went, and will definitely go back, but let’s be under no illusions that it will be a restorative holiday!

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Cycling

In our quest for fun weekend and holiday activities, Sam’s tricycle has been a godsend. We are constantly aiming for variety in Sam’s life; things to do that aren’t us reading him books or watching an ipad, activities that get him out of his wheelchair.

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The trike offers all of the above, whilst also allowing a rare opportunity for Sam and Eli to do the same thing at the same time and pace. Both boys have got orange bikes/trikes, and we have just hit the moment when Eli has worked out how to ride his balance bike for longer than 2 minutes without demanding we carry it. Meanwhile, Sam has hit his stride on the trike.

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This means we can spend fun mornings in the park. Sam is happier, and more active, than he would be if we were pushing him in his wheelchair (and strangely less scared of dogs). The boys like racing each other, and I feel like we’re a normal family. Our boys are learning to ride their bikes together, on sunny days, in parks full of daffodils. We’re living the dream!

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We’re not the only ones who like the trike – people smile at us as we pass, much more than they would if Sam was in his wheelchair. I think a big orange tricycle gives people a way in – even legendarily unfriendly Londoners find themselves saying hello. One woman asked if she could take a photo.

We bought Sam’s trike last year. We got advice from various physios and had trials with two companies. There is no statutory (e.g. NHS) funding for equipment like this, and they are really expensive, so we took our time deciding what kind would work best.

The trike we decided on, made by a company called Theraplay, can be parent-operated from behind, so Sam can ride the trike normally with us pushing and steering. This allows it to be as normal a riding experience as possible, but with us doing most of the work. Sam chose to have an orange one.

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Whenever we consider buying big pieces of kit like this there’s a tension between enthusiasm and caution. Enthusiasm for the possibility of this being The Thing That Sam Loves, that he can use easily and effectively, that he is able to operate independently and generally makes all our lives brilliant and fun. Caution because we’re about to spend £1400 on something that Sam might not like, might not be able to use, and then we’ll have to work out how and where to store a huge white elephant and manage our disappointment.

This time the gamble has paid off. We have been slowly increasing the distance and speed that we push Sam. He now likes us going really fast. So far, we have been doing all the work – Sam’s feet are forced round as we push the trike forward, but we might be on the cusp of him being able to do some of it himself.

He finds holding on to the handle pretty tricky, but he can sometimes push the foot pedals round on his own now. We still hold the handle in order to steer for him but for a couple of metres we aren’t pushing at all – all of the forward momentum is Sam on his own.

This is the moment that I really hoped might happen, but was worried might not actually materialise. To pedal the trike, Sam needs to control his legs separately and time it right. It is difficult for him but, like so much that he does, he is trying really, really hard. Well done that boy! Well done that trike!

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Broadening Horizons

When I was doing my post-graduate diploma to become an architect, I studied at a very well-respected university in London. Through a complicated, confusing process of admissions, I ended up in a teaching unit with two eccentric tutors. They dedicated themselves to broadening the horizons of their students as widely as possible, the manifestation of which was to teach us as little as possible about buildings while having long (and occasionally unintelligible) conversations about cybernetics, pataphysics and (in the case of my work) weaving.

For me, it wasn’t a hugely successful approach and I didn’t thrive in an environment so self-consciously wacky, but I respect their intention. Life, and particularly professional life, is rarely as varied and fun as one would like so it’s important to broaden horizons before they are narrowed by the requirements of a Local Authority Planning Officer.

I carry this idea in to my parenting. I think the role of any parent is to provide as many possibilities as possible, to raise a child that believes they can do what they want and understands how big and rich the world around them is. Of course I have prejudices and opinions which I can’t help projecting on to my kids – I would like my sons to contribute, I might struggle to rouse enthusiasm for them being bankers – but I mainly want them to feel they have options.

Naturally our aspirations for Sam have adapted a bit to fit his talents. James has had to accept that the already low probability that he’d play international rugby has further decreased. But that’s okay – I have never been hugely keen on the idea of my (inevitably) slight sons being pummelled – we just need to find some alternative possibilities and role-models.

Much of the world is still open to Sam. He can read and spell at an appropriate level for his age so as long as we can facilitate his communication there is no reason that he can’t do all sorts of exciting and interesting things. Once you start to look there are lots of people with profound communication difficulties doing brilliant jobs: Stephen Hawking obviously, the media’s favourite disabled person.

I recently came across the work of Jacqueline Smith – an artist who is physically disabled – through my mum spotting something in a Printmaking magazine. Following some internet detective work, I found the Eye Can Draw project which aimed to establish greater access to printmaking for artists with disabilities in Dundee, Scotland. Amongst other things, they linked eye-gaze technology with graphic software, and then used the drawings to make prints using various printmaking techniques.

Once you think about it, it’s an obvious thing to do. But it hadn’t occurred to me. Sam uses an eyegaze computer to play games; why not encourage him to make art this way?

THIS IS WHAT IT’S ALL ABOUT. These are the people we need to know about. Not just taking Sam to art for kids and hoping/helping him to use his hands, but finding role-models, and their work, which is inspirational in both process and end result.

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I loved Jackie’s prints, and I’m pretty sure I would have liked them even if I hadn’t been so heartened and inspired by her methods of production. She is a talented artist who just happens to make her pictures via some specialist technology, which itself requires skill and expertise to use. It is no surprise to me that Jackie’s work was nominated for the Lumen Prize 2014, for art created digitally.

So I bought one! I pretended to myself that it was a present to Sam. I had a very friendly email exchange with Jackie who was concerned that the scale of the print would be intimidating in a domestic environment, but I can’t think of anything better than eye-catching eye-gaze art. Let’s intimidate ourselves with the positivity of disability.

The print is now framed and yes, it is rather large. I might make it my goal to only buy pictures that are the same size as my children.

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