A Weekend Away

We went away for the weekend in June to the Calvert Trust, an activity centre in Devon. James, Sam, Eli and I spent the weekend being the kind of people you see in adverts for happy families. We canoed, cycled, abseiled and swam.

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The Calvert Trust is fully adapted for people with disabilities to be able to do all of the activities on offer. I think of it as Centre Parcs crossed with a youth hostel in a utopian inclusive world.

James and I took Sam there three years ago. Then, we’d had a good time and Sam had had some extraordinary experiences. It was the first time he had been down a zip wire, or canoeing, and he had liked those things, but he hadn’t enjoyed everything. He’d struggled with the unfamiliarity of it all and the amount of waiting involved in being part of a group. In addition to preparing all of his meals in a bathroom, and getting up with him during the night, James and I were also trying to entertain him between and during the activities. It was a worthwhile but utterly exhausting weekend for all of us. I wrote a blog at the time which is here.

This time we took a night carer with us. And Eli.  And realistic expectations.

The combination of Sam being older and Eli’s boundless enthusiasm meant we had a really good time. It was still tiring, but the kind of tiring that comes of having had a fun day with kids who have enjoyed themselves. We went canoeing with Sam sitting in a special seat. We went cycling on special bikes which was marvellous (apart from the moment when Eli careered off into the biggest patch of stinging nettles in Devon). We connected Sam to a rope and dropped him from a perilous height, and then sent him down a zip wire (videos below).

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As Sam gets older it becomes hard for us to help him to take risks, to really feel a sense of danger and the physical rush of being thrown or falling, which he has always enjoyed. We always tell people he likes speed – when he goes ice skating we encourage the professionals to take him round as fast as they can. When he was smaller we could easily throw him in the air or push him hard on a swing and he loved it. It feels good to give him the opportunity to be dropped from height in a terrifying way – to hear him shriek and then laugh. Just because you’re disabled doesn’t mean you should be mollycoddled, gently pushed over surfaces with small changes in gradient for the rest of your life.

It wasn’t all wholesome fun. We still had to entertain Sam and cajole him into wearing a helmet. He spent some time watching an ipad while others were doing activities he’d made clear he wasn’t interested in. He and I went abseiling which he hated and it made him cry. I took him back to the room while Eli went climbing because Sam was totally over physical activities by that point in the day.

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But really, that’s fine. It was fun! It was lovely to have a weekend of just me, James and two kids (Stella was at home with family). Away from the activities, we spent more time together as four than we have done for years. The comparison to our previous trip, when Sam was younger and less happy, was stark.

It was one of those trips when Eli makes everything more fun. Sam is often happier when he is around and vice versa. New experiences don’t feel as high stakes when you have two children doing them – if Sam can’t cope with it and has to bail, Eli will probably still have fun so it feels worth the effort or vice versa again. And it’s hard not to enjoy yourself when you have a six year old telling you that what you are doing is fun, awesome, and brilliant repeatedly, before, during and after each thing.

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This visit it happened that ours were the only children there and the other groups were of adults with various impairments, some visibly physical, some not. Eli made friends with some of the other guests, playing table football with them and asking them about their days. The kids stayed up late to watch live music, though we all refrained from the disco. I felt so strongly how idealistic a place it is – somewhere where everyone can do the same activities and eat in the same room, regardless of impairment. No-one needs to explain their disability. Conversations are about what people’s access needs are rather than what they can’t do. No-one stares. It’s how the world should be and we’re so fortunate to get to experience that if only for a weekend.

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New wheelchair

IMG_4188There are certain milestones along this journey of being a parent of a disabled child which are inevitable. Some are actually the omission of milestones: the missing of typical developmental steps, the absence of a first spoken word, there never – in our case – being a first step. Others are very much present: the diagnosis of impairment, the first feeding tube, the first operation.

One of the big ones is the first wheelchair. It’s possible to keep a baby, and then a ‘toddler’, in a buggy for a long time. At some point it becomes clear that the buggy is insufficient and some kind of wheelchair (or the compromise, a ‘Supportive Buggy’ is necessary). This will be for lots of good reasons to do with postural support. It is entirely possible to be convinced by the need for the wheelchair and sad about the arrival of it simultaneously.

Sam had his first wheelchair (more of a supportive buggy) when he was two. It was needed – he didn’t look at all comfortable in the buggy we had for him, and it was showing the strain of near continuous use. So we went for a fitting and a few months later it arrived. We heaved it up the steps to our house.

I wasn’t in love with it, but I could see the advantages. He sat well in it. It folded, so just as with his previous buggy we could lift Sam into his car seat and put the wheelchair in the boot. The slight difference was that doing so injured us almost every time.

Since Sam was still young he often slept in the buggy, and he was sensitive to bright sun, so we asked about a hood and rain cover for the wheelchair (as is standard with  a buggy). It turned out that as these were not ‘essential’, they would not be provided by wheelchair services, but we could choose to buy them ourselves. They arrived just after Eli was born and I remember fitting them while James held tiny Eli. They worked, but were incredibly clunky and would need to be removed every time we put the wheelchair in the car. They looked like something someone had made in their garage and were as far removed from the slick design of a buggy as you can imagine. I was really cross and after crying for a bit I wrote an extremely grumpy letter to the manufacturers which James had to tone down so that it was only quite cross. We sent them back and found our own solution. I have written before about the way things look here

Since then Sam has had two more wheelchairs, each a bit more ‘wheelchairy’ than the last. Over the last six years we have adapted our house and bought a “Wheelchair Accessible Vehicle” (a car with an in-built ramp, blog about it here) so we have fully accommodated the wheelchair into our lives. I see the wheelchair as an enabler for Sam, and we make do with hats and ponchos so there are no resentful conversations with suppliers of wheelchair hoods.

But what I still struggle with is the particulars of each wheelchair. Sam’s wheelchairs are supplied by our local service which is staffed by great people but, like all NHS behemoths, can be a bit inflexible.

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When we first discussed the possibility of Sam needing a bigger chair last year they showed me the type of chair they thought would be most suitable. Even allowing for the fact that it wasn’t the colour we would pick, and wasn’t set up for him, the chair I saw was really ugly. The base looked to me as though someone had rustled it up out of some spare scaffolding poles. I could see it was practical, and I was told that it was one of the most reliable chairs, but it was winning no prizes for elegant design. The seat was covered in weird synthetic fabric that had a clichéd care home vibe. It was enormous compared to his current wheelchair, and relied on a ‘knee block’ (literally a shaped block, fitted around the knees) to keep Sam in the right position, which he had never had before.

I knew Sam would need a new chair soon, and I respect the opinion of an Occupational Therapist who knew about seating for disabled people. But this was a chair that Sam would use every day, sometimes for 12 hours a day. We would see it every day – in our house, in our car, in family photos. In what other sphere of your life would you think about acquiring something like this and accept the first thing offered to you which happens to be the one in stock? Do people buy cars they hate the look of? Do people get dining chairs that they’re not sure they’re going to find comfortable? There is a huge market for buggies which people spend thousands on and have the kind of designers who formerly worked on Formula One cars.

Of course it would be replaced if Sam wasn’t happy and comfortable, but I really hate the clunkiness of wheelchair design. I resent spending a lot of time incorporating Sam’s needs into the design of our home which – if I do say so myself and may possibly have pointed out before – is beautiful AND fully accessible, only to have it cluttered up with something that may be technically good but is aesthetically shit. It’s unfair to have options for large purchases in every other aspect of our lives, but not this.

The wheelchair service was patient, told me to have a think about it, have a look at other options privately (while recounting some horror stories of chairs breaking and families having to arrange fixes themselves…). Meanwhile, Sam kept growing. An engineer came to adjust the eyegaze mount on the wheelchair and we had another conversation about the chair – we all knew his current chair wasn’t quite heavy enough to support the device, and that a bigger chair would be better. After listening to my monologue about scaffolding poles she mentioned that the base came in different colours. She emailed me later to say it definitely came in black.

And so, slowly, I came round to the idea. The seat fabric could also come in black which made it look a bit less healthcare setting. We eventually ordered the new chair, and it arrived last month. Sam very patiently sat through adjustments and we brought it home with us.

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You know when you are away from your kids for a few days and when you are reunited it’s like you are seeing them anew. You notice the size and the feel of them with a jolt – both familiar and novel. It was like that with Sam in the new chair – it was Sam in a wheelchair, which is our daily experience, but he looked taller and older and relaxed. It made me feel like I must have been squeezing him into a ridiculously small chair before, like we hadn’t noticed that he was now eight. Pushing the new chair is like a dream – no weird knobbly bits on the handle, much less veering unpredictably into gutters. It comes with a tray which is a perk. There’s even just enough room on the side bar for Stella to hitch a lift (don’t tell wheelchair services…)

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There’s of course a little hint of melancholy – it’s wider, it will be a bit harder to squeeze into small spaces. We won’t be able to carry him and it upstairs to friends’ first floor flats like we have done recently. These are sadnesses relating largely to physical barriers, not to Sam’s need for a wheelchair.

Sam’s not hugely keen on the kneeblock so we’re taking that slowly (not as unkeen as we originally thought though – turns out his shoes were too small and we hadn’t noticed which was making him understandably grumpy). It’s all come good in the end. Bring on the adventures.

P.S. If you would like to be notified when I post a new blog, you can subscribe by putting your email address into the box on the right of the screen. You’ll be sent an email each time I post.

‘More disabled’

You should all listen to a podcast called Distraction Pieces with Scroobius Pip where he interviews Jess Thom (link here). They are two thoughtful, interesting, amusing people talking about Jess’s work and life. This is in itself fascinating, but the podcast is also a glorious auditory celebration of difference, as Thom has Tourette Syndrome and Scoobius Pip has a stammer.

I found that when I first started listening I was really aware of their particular styles of speech but by the end (and it’s over an hour long) I hardly noticed. Thom talks about how her family and best friends barely notice her verbal tics – they are so familiar with them and her that they unconsciously screen them out as they listen to what she’s saying. I could feel myself doing this as I listened.

Isn’t that the way… Something new and unfamiliar draws your attention but given enough exposure and time your brain will accommodate it. One’s perception of another persons characteristics is going to depend on your familiarity with them (or with disabled people in general), and on your own preconceptions. I notice this with Sam. People meeting him for the first time can be struck by his disability, by his wheelchair, and sometimes can’t quite get past that to see a boy. We are so familiar with his body now.

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Apart from good discussions about the intersection of creativity and inclusivity, Thom also talks about the social model of disability (the idea people are disabled by society and their environment rather than their own impairments – I talk a bit about it here), making the point that she feels more or less disabled depending on the context. In an environment where she faces steps (she uses a wheelchair) or where her verbal and physical tics are not welcome, she will feel more disabled than somewhere where these needs are well accommodated.

This isn’t the first time I have heard these concepts, but each time I hear them explained eloquently I have an ‘Aha!’ moment and I hope everyone else does too. It requires a flip of mind to realise that the step is the problem, not the wheelchair. And it requires a degree of nuance to perceive disability as a constantly shifting scale that depends on the day, the activity, the environment, the level of support rather than an incontrovertible fact.

I find myself more aware of Sam’s disability when we are somewhere where he is the exception, particularly somewhere where the doors are a bit small, the spaces between the tables narrow, and we have to make an almighty fuss just to get him inside. Or in a theatre where it’s not clear that people are happy with Sam’s noises and his creaking wheelchair. In these contexts we, and the people we are squeezing past, become hyperaware of his disability.

At the other end of the spectrum, our house is where Sam is least disabled. I am so familiar with his body I largely don’t notice unpredictable movements when I look at him and will often only really notice noises that are communicative. At home he can, with help, go everywhere and do what he needs and wants to do. He can move around with his siblings, visit his parents in bed, be part of the action or somewhere quiet. He can have a bath every night. We can care for him easily and facilitate the things he enjoys doing. The house works with us, it encourages family life and visitors.

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It is possible to appreciate all of these advantages, and the privilege of having been able to make this house ours, because we have lived in many houses, visited many pools and cafes and houses that worked against us in small and big ways.

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The scale from ‘less disabled’ to ‘more disabled’ is not linear, and does not correlate with ‘better’ to ‘worse’. When I say Sam is ‘least disabled’ in our house, I do not mean that to be ‘more disabled’ is negative – because I do not believe that to be disabled is bad. “Disabled” is not a value judgement, it’s a description or an identity. When I describe Sam as least disabled in our house I mean that this is the environment in which there are least barriers to him doing what he wants to do, being who he wants to be, going where he wants to go (or where I think he should go, since I am his mother). This is thinking based on the ‘social model’ which Jess Thom refers to in the podcast.

So go and listen to the podcast. Maybe it will challenge your preconceptions about what people on podcasts should sound like. Maybe you will be inspired by Jess Thom’s creative work. Maybe it will expand your understanding of disability a little. I guarantee you’ll learn something, and laugh.

 

 

 

The Perils of the Internet

Like practically everyone in the developed world, I am trying to be more thoughtful about how much time I spend on my phone and on social media. I try, with mixed success, to not spend time on my phone around the kids, and to avoid disappearing into a blackhole of news about people I don’t know. Every once in a while I think about deleting the apps. Sometimes I actually do it, but I can’t quite resist because those clever engineers know what they’re doing and I enjoy the pretty pictures and surreptitious snooping.

But it’s also because I get genuinely useful information and a sense of solidarity from the social media I use. It’s brilliant to be able to make connections with disabled people, to learn more about their experiences and their politics. It’s great to be able to talk to other parents of disabled children. I find out about events, equipment and approaches, from organisations and individuals. I think there is huge value in sharing experiences, hence this blog!

But once you find yourself in this little corner of the internet, there are many stories written by parents of disabled children, and it can be uncertain ground. There is a fine line between sharing experiences and oversharing information about a child who may not be able to consent.

I question myself a lot about what it is okay to write about and what is not, particularly when I read things which I think are inappropriate – perhaps because they show photos which I wouldn’t want to see of me as a child on the internet, or because they dwell on how difficult their life is because they have a disabled child.

I worry that when that child is an adult they will be sad to read what was written about them. I am sometimes concerned that the parent’s account is disrespectful to disabled adults with the same impairments as their child. I am by no means beyond reproach – I am sure I have shared things that I thought were okay at the time, but would now not. Sometimes I think that maybe I shouldn’t be sharing anything at all, but I keep coming back to my conviction that as long as disabled children and adults are perceived as ‘other’ by much of society, there is value in attempting to puncture ignorance with our stories. I try my best to respect all of my children by carefully editing what I share (and perhaps I should share more photos of myself…).

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What I am particularly drawn to are stories about disabled children overcoming communication difficulties, and adults that use Alternative and Augmentative Communication (AAC). It is inspiring to see people who have found the communication system that works for them, and are able to say what they want to say. It’s encouraging to see that methodical, consistent use of AAC can pay off – that children who were unable to communicate have a viable way to do so.

If there’s one thing these kinds of internet stories are good at, it’s celebrating the role of the parent, most likely the mother, in facilitating their disabled child’s access to AAC. Often the mother has fought for the right device, has pushed those surrounding the child to presume competence, has homeschooled the kids when the schools weren’t good enough, has modelled AAC language to their child consistently. The kid is therefore doing really well (possibly writing messages saying how grateful they are to their mother).

And, obviously, these stories are amazing. I want Sam to be the subject of these stories – celebratory, happy stories featuring quotes from a child that found it tricky to use expressive language.

So, does Sam have the right AAC system? Is he getting the right education? Is he getting enough specialist input? Should I be homeschooling him? Am I, personally, doing enough to encourage literacy? Are we modelling enough? Are we doing it every day, in every place, at every opportunity? Because if Sam doesn’t become expressively literate, will it be my fault?

These are the kind of myopic, self-obsessed thoughts I have as I peruse Facebook and it’s not that relaxing. I know I don’t want to homeschool any of my kids – I taught an English camp for Spanish kids when I was younger and I learnt from that summer that I am a terrible teacher. I shouted a lot, particularly when it looked like the kids were enjoying themselves too much. I think there are all sorts of advantages to going to school beyond literacy. But still. The pressure. My god, the pressure.

(Sidenote: if crafting expertise was crucial to teaching literacy, I’d be all over it. Gratuitous World Book Day photo:   )

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And then, occasionally I get a moment of thinking we’re not failing. We’re doing our best, and maybe we’re actually doing okay.

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Today Sam was home from school because he has yet another cold (don’t get me started on the sickness count in this house this winter, it is beyond tedious). Stella was with us, and I was pottering around trying to get stuff done between the nose wiping and Calpol distribution. Stella had pulled Sam’s YES and NO symbols off the velcro on the back of his chair, and she was standing next to him holding them up, saying ‘Yes, Sam. No, Sam’.

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This is how Sam answers questions – he looks at yes and no symbols. She is doing this because two year olds copy what they see around them. She has noticed our modelling and she is using AAC with her brother. It’s a little bit magical. We must be doing something right.

Lucky

IMG_9945I’m trying to institute a new tradition in our house: on each of the children’s birthdays we will all get up and do birthday breakfast, open presents and be generally celebratory, and then I will go back to bed for at least an hour. I think it is a good idea for all of us to remember that this is the anniversary of these kids coming out of my body and that body could do with a little lie down.

Stella’s birthday a few weeks ago was the first time I implemented this brilliant new tradition, and as I was lying down remembering her birth two years ago, I read an article by Chitra Ramaswarmy about her tendency to catastrophise. It was poignant to be reading about how incubating and then having children affects your outlook on life, particularly if one of your children is diagnosed with a disability.

Ramaswarmy experienced a very tough year in which numerous difficult things happened. By its end she had – after a complicated pregnancy – given birth to a healthy baby, her partner and mother had been seriously ill and recovered, and her son had been diagnosed with autism. Was it a year of disaster or, actually, was her family lucky?

Ramaswarmy describes how she is naturally a catastrophist, and inclined to be anxious about the potential for the worst case scenario to occur. She makes the case that the parenting is an antidote to catastrophising:

‘The hard graft and small, pure joys of looking after a baby and a little boy with autism anchor me to the present. The baby keeps me healthy, makes me feel lucky and gives me a constant dose of perspective. She is also exhausting: I am too tired and busy to catastrophise with as much fervour as the habit demands.’

This rings true for me. I am not a catastrophist. My natural tendency is towards slightly anxious optimism. But there is no doubt that I thrive when I am rooted in the present, and nothing keeps you in the present like having a small child, and then another, and then another. It’s not all rose-tinted snuggles – Sam’s early months were difficult for us all and he was frequently made miserable by reflux and feeding difficulties. But my focus on looking after him meant that by the time I looked up and around we had largely weathered the storm.

I went on to have two more babies and, luckily for all of us (and I mean luck, because these things are just a roll of the dice), Eli and Stella were babies that were easy to please. I have been largely too busy caring for all of them over the last eight years to spend much time thinking about what might have been, or what might go wrong.

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What really resonated with me was Ramaswarmy’s reaction to her son’s autism diagnosis:

Then there is my brilliantly singular, loving and brave son. Before he was diagnosed with autism (that happened this year, too) I feared this moment: how will we manage? What will we do about school? How will he develop? Is everything going to be OK? The mystery and idiosyncrasy of autism can be frustrating, but it is also a visceral reminder that none of us knows what lies ahead and that compassion is the most powerful weapon against anxiety. So, here I am, living and thriving in the future over which I once catastrophised. And you know what? It is not so scary after all.’

We have had Sam’s birth described as a catastrophe, and in purely medical terms that may be true. But it has not been a catastrophe for our family. Sure there are difficult times, and complications, and we are sometimes sad and frustrated, but there is no catastrophe here. Something that was unfamiliar and therefore terrifying has become normal to us, and with familiarity comes an ease (hugely helped by the privilege of having carers to help and living in an adapted house).

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Over Christmas, all the kids were largely at home every day for two weeks, something that is rare, which meant they spent more time together than usual. Stella can now talk and asked about, or talked about, Sam at least every hour. Sam happily tolerated her climbing on his wheelchair, wiping his face, pressing her cheek into his. Eli is currently obsessed with gags about bodily functions and Sam encouraged him by laughing at his poo jokes. Sam let Eli play with all of his Christmas presents. Stella clambered on Eli and ruined his games and he only snapped after such goading that any jury would be on his side. Sam and Eli watched Star Wars for the first time and were scared and excited by the same bits. We went ice skating, for walks, swimming and to the cinema.

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The ‘mystery and idiosyncrasy’ of cerebral palsy can be difficult, but it is also a prompt to live this life that is happening right now, even if it is one that would have counted as a bad outcome at some point. We have three healthy kids, and it’s not so scary after all. Are our family the survivors of a disaster, or are we lucky? Perhaps ask me again when they’re all teenagers, but on the basis of this Christmas we’re extraordinarily lucky.

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The temptation to interrupt

IMG_6909If you have a child who doesn’t follow the typical path it’s difficult to have a sense of where they will end up. I don’t mind this too much; I don’t find it that useful to have conversations about what Sam may, or may not, be doing in ten years time.

But everyone looks for role models for themselves or their kids, and some sense of where the path might be going. Disabled adults are rarely found in mainstream media, so I was lucky recently to be at a study day where a panel of five Alternative and Augmentative Communication (AAC) users answered questions from the audience using high tech devices. Three of the five used eyegaze, exactly like Sam is learning to. There is a video here.

It is important, and inspiring (not in an inspiration-porn kind of way) to see people using AAC to talk so eloquently. THAT is where we want to aim for.

But I was really struck by something that one of the panellists – Kate Caryer – said at the event: she pointed out that people sometimes think of a communication aid as a gift or a toy, that users should feel grateful their local authorities have provided. Whereas it is in fact a human right.

Respecting Sam’s right to communicate means his device needs to be there, in front of him, as much as possible, not just when we decide we can fit it into his daily life. We need to make sure the batteries are charged, and the mounting arm is ready when it is needed. We need to force ourselves to fit it even when it feels like a bit too much effort on a busy day.

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But more profoundly, we have to be ready to hear what is being communicated. We have to alter our own culturally-constructed notion of how conversations work.

I find it uncomfortable to leave gaps in conversation – I feel I have to fill them. I first realised this when we lived in the Middle East and would spend time with Syrian friends who were happy to sit companionably with long pauses in conversation. I had to teach myself to enjoy this time and not fill the gaps with mindless waffle. This was made easier by my rudimentary Arabic.

Someone using a communication aid to talk is probably going to take longer, more time than a typical talking person. At the study day, it took time for the five individuals there to answer questions from the audience: they need to hear the question, navigate (with eyes or fingers) around their communication device to find the vocabulary for what they want to say, and then speak it.

This often makes conversation with an AAC user slower than we are used to, and I for one need to force myself to accept that rhythm of speech. This means waiting the extra 30 seconds to see what your conversational partner wants to say, and not interrupting. Sam isn’t able to shout immediately, in the way that Eli does frequently, ‘Mummy, I was actually in the middle of talking when you interrupted me!’

I frequently screw up even when I am trying my best. I realised recently that after a conversation with a woman who uses a communication aid, I had said goodbye and walked away. I hadn’t waited to see if she wanted to say goodbye, or even if she had anything else to say. I felt a little sting of shame when I later realised. We can all have good intentions, but we don’t always behave as well as we’d like.

If you manage to fully embrace the alternative pace, there are rich rewards. A few years ago when Sam was just learning to look at Yes and No symbols on the armrests of his wheelchair to answer questions, we went to a local park and met some friends. One of them, who happens to be a nurse, crouched down in front of Sam so she was at his level, asked Sam if he was enjoying his new school, and then waited.

Sam slowly and deliberately looked down at the Yes symbol. It was the first time he had totally independently answered a question from a stranger, and it happened because she asked the question in the right way for him.

If we accept that people with communication difficulties have a right to talk – and therefore to be given the support, equipment and training they need – then they also have the right to be heard. And we, the people taking our communication skills for granted, have to learn how to listen. Not make assumptions about what is being said, or interrup, or fill the gaps in conversation with inconsequential waffle, but actually listen.

I mean it’s a good tip for life generally – many marriages could benefit from partners actually listening to what each other are saying. But rather than forcing the AAC user to navigate their way through their devices to say ‘Stop interrupting me’, maybe we should just take it upon ourselves to get our own houses in order.

 

A New Standing Frame

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Sam needs a new standing frame. He stands most days – he is unable to stand on his own so the standing frame provides enough support to keep him upright.

On a busy day Sam can spend up to 10 hours a day in his wheelchair. He ‘tolerates’ sitting in a chair really well, He’s happy being able to see around him and his chairs are comfortable and supportive enough for him to be content to spend hours in them, but it’s a long time for his body to be in one position and over a lifetime sitting this much can lead to all sorts of problems.

There are lots of advantages to standing. Human bodies are designed to be upright and although Sam spends about 12 hours a night lying flat, it’s not the same stretch as standing straight. Bodies should ideally experience a variety of positions, and the digestive system benefits from him being upright. Also kids like Sam are at huge risk of their hips migrating out of their sockets and in the absence of daily walking, standing is a good way to bear weight on bones and joints.

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Sam first had a standing frame when he was almost one year old. At that stage he often hated it, and it felt more like a torture instrument than a helpful aid. These days Sam will happily spend an hour standing as long as he has good enough entertainment. The standing frame isn’t particularly elegant, and takes up a lot of room, but the benefits to Sam are worth having it available to him.

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A rep visited recently with a new kind of standing frame for Sam to try. There was normal amount of fiddling and adjusting, but once Sam was in the new standing frame he was happy and his physio was able to see that it worked.

At the end of the session we were asked what colour we wanted the new standing frame to be. Bear in mind that this is a standing frame that lives in Sam’s room, the room that was finished and decorated earlier this year. The room that I am desperately trying to keep as a boys bedroom rather than an equipment storage room.

Sam’s physio said we could have it in black, pink, orange or blue. Blue, I said. That will be best.

Then James said, ‘Um, shouldn’t Sam choose what colour he wants his standing frame to be?’.

Of course he bloody should! What was I thinking? I spend a reasonable amount of my time glowering at people who don’t talk to Sam directly, reminding everyone that just because he can’t talk doesn’t mean he doesn’t understand what people are saying. I tell people that he is a boy with views and preferences. What kind of ally am I?

Except… I have a history of manipulating my children’s choices. When Eli is choosing between two tshirts and one is really ugly, I will unashamedly steer him towards the one that I don’t dislike. I haven’t allowed some things in Eli and Stella’s bedroom because I don’t like them (e.g. massive garish posters).

I had a strong suspicion that given the choice Sam would choose to have an orange standing frame. Orange is his favourite colour. Let me explain that I have a mixed relationship with orange. It’s a hard colour to get right in my view. And the orange of this standing frame was more sickly, pasty colouring paper than cool, vibrant citrus fruit.

Fortunately for Sam he has hugely improved his ability to clearly communicate Yes and No over the last year. Last year it was often difficult to tell whether Sam was answering a question and we estimated that we clearly understood his yes and no maybe fifty percent of the time which is a bit tricky with a binary outcome. Now we would say that we get a clear yes/no about eighty percent of the time.

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So using his latest communication book I talked Sam through the options and asked him what colour he would like his standing frame to be:

Would you like a new blue standing frame, Sam?

No.

Would you like a black standing frame?

No.

Would you like a pink standing frame?

No.

Would you like your new standing frame to be orange?

Yes.

Obviously.

Totally cocking up my interior design aspirations.

Thanks Sam.

Having a laugh in Trafalgar Square

We have recently been printing photos – mainly for a wall in our house where we have an ever expanding, slightly chaotic collection of family photos. There is currently not a single photo of Stella on the wall. She is almost two years old. We need to rectify this quickly, before she’s tall enough to see the photos and old enough to mind.

As I go through the photos on our computer, I get distracted by loads that will never make the cut for the wall. I like to think I am a decent photographer, but almost all our recent pictures are badly composed phone photos of non-compliant kids. So I force myself to focus more on the memory and emotion of when the photo was taken, than on the quality of the composition. Kids don’t care if the background is full of mugs and syringes, they just love a photo of them with their dad.

But this photo, I love:

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It is technically flawed, badly composed. But look how happy Sam is! And look at all the tourists wandering around behind him, oblivious!

This was taken during the summer holidays, just off Trafalgar Square. James, Sam, Eli and I had just been to the theatre to see Horrible Histories at the Garrick Theatre. We had brilliant seats. Sam’s space was just off the foyer, at the back of the circle, so quite a long way from the stage but with a brilliant view. This is everything we look for in a theatre seat for Sam: wheelchair spaces in theatres are often right by the stage which he finds a bit much. There have been numerous times when we have had to leave a theatre early because Sam isn’t enjoying the performance. (His other pet hate is unexpected, roaming musicians in theatrical performances. He likes people to stay on the stage, not appear behind him playing a trumpet.)

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The rest of us had seats either side of Sam, and we all enjoyed the brilliant performance. The boys have watched almost every episode of the TV programme so we knew what to expect. It was genuinely amusing for all of us, with poo jokes interspersed with historical facts, and loads of songs. Who doesn’t like a rap about Henry VIII?

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After the performance we went to a café just off Trafalgar Square for lunch. We sat outside, with the pigeons, and put Sam’s ipod on while we were eating. Understandably, Sam gets bored if he’s just sitting around while being fed, and it’s not possible to talk to him or read him a book while eating a sandwich, so we always have a bluetooth speaker attached to his wheelchair (the pink circle by his head) which is connected to an ipod full of audiobooks. I think he’s listening to a David Walliams story in this picture.

I love the photo because how could you not love a kid laughing this much? But also in this photo I see all of the other ways in which I have changed over the seven years I have been his mother. At the beginning going on a trip like this to central London could be a bit daunting – how would we get there? Could we get Sam’s wheelchair in? Had we packed everything? Would Sam enjoy it? When Sam was very small I sometimes felt self-conscious about feeding him in public. I was really aware of how much noise we were making, and would have felt a bit anxious about playing an audiobook in a public place. I might have noticed whether people were looking at Sam, not because I was ashamed of him but because I was worried about him noticing them looking. Sometimes it felt like the logistics involved in getting us somewhere weren’t worth the risk that Sam wouldn’t enjoy it.

This trip was lovely. We packed what we needed (takes time, but we’ve done it hundreds of times) and drove in to the West End. We were a bit early so we had a coffee in Leicester Square. Went to the theatre, had lunch at Pret. Admittedly we had left Stella at home, as she would have added an unnecessary level of unpredictability to the whole outing.

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Not only do we now not care if people see Sam being fed through his gastrostomy tube, we don’t even notice if people are looking. If he laughs hysterically, loudly, we are chuckling with him rather than being self-conscious about other people noticing. If Sam needs to listen to an audiobook in order to not get bored, that’s more important than whether someone doesn’t want to listen to David Walliams in their lunchbreak.

And what this photo shows is that Sam has a brilliant time on these kinds of trips. We all do. He hugely enjoyed Horrible Histories, and now knows more about the naming of Saxon villages than he did previously. He is able to take advantage of us living in London.

And the general public in Trafalgar Square are largely too busy going about their business, admiring Nelson’s Column or grabbing a turmeric latte, to notice whether our son is disabled, or tube-fed, or listening to The World’s Worst Children.

This is the kind of photo I wish I’d had in a crystal ball when Sam was little and not enjoying life. I might laminate it and show it to anyone who gives us the pity-look and talks about how sorry they feel for him. Don’t feel sorry for him or us, he’s having the time of his life!

The legacy of the Paralympics

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Occasionally we get a glimpse into how the world could be. A world where the environment is not disabling. It’s like the social model of disability come to life. Do you know what the social model of disability is? If not, you should. It’s one of those sleights of hand, or thought, where you are told something which you immediately know to be true and you can’t believe you didn’t realise it before. The social model sets out the idea that disability itself isn’t the problem, and often isn’t itself a problem at all, but it is our society and environment which disables people; that sees disabled people as in need of fixing, and of their physical requirements as some kind of inconvenience.

Once you have your head around it, you realise disability is as much a social and environmental construct as a personal physical issue. Places are inaccessible so disabled people can’t visit them, or at least not without loads of planning and fuss. It isn’t their disability that means they can’t go to the theatre, get on the train or visit the stadium, it’s the physical environment. See?

As much as I like to go around lecturing people on the social model of disability, the reality is that day-to-day, we are forced to accept that Sam can’t go everywhere. Then occasionally we go somewhere and we realise what a total pain in the arse most big trips are for wheelchair users, and how incredibly easy and convenient these things could be once someone has given it some thought. If you too would like to spend some time in this utopian dream then get yourselves to the Queen Elizabeth Olympic Park and the stadium therein.

The Olympics and Paralympics in 2012 were a seminal moment for me. I love the Olympics at the best of times, but to have it in my home city was so exciting. Eli was two months old and I was able to spend hours feeding him, sitting on the sofa, watching athletics. Sam and I went to watch kayaking. After all the predictions of doom, the Olympics were brilliant and incredibly popular. When it was then time for the Paralympics, the huge wave of enthusiasm continued and loads of parathletes became household names. There were people with various disabilities everywhere you looked, on TV and billboards. It felt like the Paralympics were an actual thing, with parity to the Olympics, rather than something tacked on the end.

So for me, as the mother of disabled two-year-old in 2012, this was hugely significant. It fed my soul: disability can be part of the main conversation, can be a thing of pride and success, rather than pitying looks and awkwardness. It was a glimpse into a world of inclusion.

And I wasn’t the only one. The legacy lives on. Eli’s favourite athlete is Jonny Peacock, after his teachers showed them films of him running at school (nothing to do with us). Jonny Peacock first came to national prominence at London 2012.

The legacy of London 2012 is the Olympic Park, including the main stadium. In July it was the World Paraathletic Championships, and because my brother-in-law is way more organised than we are, we had tickets for all of us (except Stella, let’s not waste this on a one-year-old).

It was reminiscent of 2012 with hoards of cheerful volunteers everywhere around the park, offering high fives to everyone who walked past. One guy offered Sam a high five and then patiently waited while Sam slowly but surely lifted up his hand. The park is all subtle landscaping and shallow gradients, ramps down to canal paths and bridges across water.

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We enjoyed wheeling around, getting some free ice cream, and then going into the stadium where Sam’s ‘seat’ was just there, with a seat next to him for one of us (our other seats were in the row in front) and a great view. There was a Changing Places inside the stadium for us to use. We had parked nearby after being emailed a special pass by an incredibly cheerful person, and offered a lift in a wheelchair-accessible bus, but chose to walk.

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While we were watching the many sports in front of us, various other wheelchair users were sat around us with their families and friends. We all watched various paraathletes compete at the top of their field. Everyone cheered the winners, and the losers. Sam found the cheering a bit much – there’s a fine line for him between being really excited and it being too much. It was almost a bit too much for me, to be honest (weep alert). But that’s fine – we didn’t really expect him to watch three straight hours of athletics, but the stadium allowed him to give it a try. And the more we take him, the more he’ll be able to cope with the sensory explosion that is a stadium full of people cheering a British high jumper.

It was a good day for Sam (at least the bit before it got too much), but it was also a really good day for me, James and Eli. It’s as important for us to see this kind of utopia where disability is not remarkable, and certainly not negative. Where it becomes clear that disability is an extremely broad spectrum, and to assume anything about someone’s level of disability, and therefore what they can achieve, is ridiculous. Where the particulars of someone’s disability are only relevant to what classification they compete in, not what needs to be fixed.

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We loved it all. It is unusual for us to go on an outing like this and not at some point discover some kind of problem with steps, or space for the wheelchair, or a lack of changing facilities. It was amazing for it all to be so easy, with so many enthusiastic volunteers, and such a feeling of inclusivity. Obviously on an average day, you might not have friendly people pointing you towards free ice cream, but you would still have the thoughtfully designed park and the stadium with easy wheelchair access. It can be done. It should be done.

 

The privilege of touch

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One of the main things about having kids is how much they touch you – from months of carrying around a baby, possibly breastfeeding them, to years of having a child on your lap and a snotty nose wiped on your arm. It can feel like near constant touching. Of smooth baby skin smelling of milk, of small fingers squeezing you, of hands whacking you in the face.

The physical relationship between a parent and a kid is so unselfconscious and incredibly lovely. Stella is just learning how to kiss and when she hasn’t seen me for a while she will come to give me a cuddle and then repeatedly touch her cheek and mouth to my lips. It is delightful. As Eli has got older there are less frequent but more prized requests for a cuddle, and I will never say no.

When you raise a small child, you get to know their body so well that not only do you know what it feels like, but you also know how it moves. If I see Eli walking down the road, I know if he is happy or sad. If James sends me a photo of one of the kids where you can’t see their face clearly, I’ll probably be able to tell what kind of mood they were in.

In some ways I know Sam’s body better than my other kids. Eli and Stella can choose to walk away from me, or to move their body in almost any way they like. If Sam is sitting on my lap, he will be there for as long as I choose (though of course he can make clear whether he is enjoying it or not). While he is sitting on me, I will be supporting him. Both James and I have been doing this for so long we couldn’t now describe what we are doing, but we use our arms, legs, torso and head to mimic a seat, to find a comfortable way for us both to be within the whirl of Sam’s ever moving body. Sometimes it’s not easy, but in this we join a long list of parents prioritising providing comfort to their child over backache.

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When Sam was little, we would spend hours holding him and rocking him in a figure-of-eight pattern, to ease the pain of reflux or to calm him sufficiently for him to sleep. These days he’s way too big for that and he spends more time sitting in a specialist chair, with us nearby. It is a less intimate physical connection but still one within which I know his body. The nature of Sam’s disability means he moves a lot, and has limited volitional control over the movements, but within the apparent flurry of limbs there is meaning.

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Sam’s often communicates his emotions by making noises – there are different kinds of sounds for happy, sad, interested, annoyed. But even without the noises, just from the way he is moving his body I could tell you whether he’s in pain or just bored. I could tell you whether Sam’s excited or frustrated. Not always, but often.

Sometimes Sam’s body needs to be moved in ways that it does not do easily. I know how to play his limbs, how to bend his knee and turn his foot in just the right way to get his shoe on properly without hurting his toes. I know what kinds of movement he likes, and what he will find irritating (and therefore which TV programme will distract him, if it needs to be done).

His is a body that can frustrate him and be difficult for others to manage. His is a body about which there are meetings held and training delivered to consider ‘health and safety’. But this body of his, which some people may see as inferior or less desirable, is actually something of real value. In the absence of being able to talk, his body can tell the story. In the same way that I can sometimes tell from the particular sound of his cough whether he needs to see a GP, I will be able to tell a therapist whether he is in pain or not from the particular way he moves his pelvis.

I treasure this knowledge I have. That even when my relationship with him, with all my kids as they grow up, is becoming less physical in the every day, that I still know these bodies. They are not mine – I am just nurturing them until they can look after themselves. But as the days of holding newborns recede, there is no absence of the raw physicality of touch, and the accumulated knowledge of knowing how these bodies work. It is an absolute privilege.

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