All that really matters

When I write this blog, I hope that it is read by people who may find themselves saying things to me like ‘I could never do what you do’, or ‘I’m so sorry’ with their head tilted slightly to the side and a tone of pity in their voice. When I tell people I have a beautiful, thriving son who is eight years old and is also disabled, I don’t want people to react with pity or sadness because it is unnecessary and ignorant. And with those people in mind I write blog posts about triking! And fun playschemes! And ziplining! I write about why we are lucky, and why wheelchairs are enabling (not disabling). I have a feeling that negative portrayals about disability are so ubiquitous that I’ll try and write about disabled children who are well, having fun, happy.

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Then suddenly I realised that maybe I have become some version of all those irritating people on social media who have apparently perfect lives, whose children are never dirty and always engaged in constructive activities. Perhaps I am one of the people that I would unfollow because there’s only so many pictures of Mediterranean holidays and accomplished crafting in tidy houses I can take before feeling a bit shit that my kids are all currently watching Kids YouTube in mismatched clothes surrounded by junk.

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What ends up on the internet isn’t an accurate portrayal of everything going on in a person’s life, and I don’t believe it has to be. But as a species we inevitably compare ourselves to others and I would hate other parents of disabled children to think they are doing badly because they are looking at me with my family and our apparently nonstop wholesome adventures.

All of the adventures we do have are facilitated by me having an enthusiastic husband, a hugely supportive extended family, and a lot of paid help. For all my hatred of the pity faces, and even with all these people helping us, there are aspects of our lives which are tough. We have too many children with differing needs. Sam has specific needs and access requirements and that means we can’t do everything we would like to as a family. Our family is like an oil tanker that takes a long time to get going and has a huge turning circle. We need to be shovelling coal daily (though presumably that isn’t how oil tankers are fuelled these days) to keep the show on the road. The days that have been successes have been carefully organised and James and I will have been put considerable work in for the kids (and us!) to get fun out.

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The majority of days aren’t special days, they are bog standard normal days when the boys are at school, then at home and everyone needs to be fed and cleaned. We have just had two months of not having anyone to help me in the daytime on weekdays and I have to set my expectations accordingly. A good afternoon/evening is one in which I haven’t shouted that much, when the kids haven’t watched TV from the moment they got in the house to the moment they go to bed, when everyone has had some of the food they should and not too much of the food they shouldn’t.

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Some weekends we are taking Sam to a planetarium or an outdoor education centre, other weekends when we have no help and we are tired or have things to do, Sam might watch hours of TV. He’s happy, and he’s learning almost nothing from the second hour of Strictly Come Dancing but we’re enjoying a family chuckle at Bruno. We can go a whole weekend with no physio, ignoring the standing frame, forgetting to practice with the electric wheelchair, not having time to get the trike out, and Sam watching up to four films.

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I’m not particularly proud of those weekends, but I really resent the idea that parents of disabled children are held to a higher standard (by professionals, by themselves) because they have to work that much harder to support their child’s development. And I hate the idea (which I am 100% guilty of) that we look at other parents and feel crap because we’re not teaching our kids phonics, stretching their hamstrings and working on their fine motor skills all the time, every day.

It should be enough to spend time just keeping our kids alive and happy, enjoying their company, or getting done the stuff (and man, there is always a mountain of stuff) that we need to. The bureaucratic load of having a disabled child is tedious but ever present. It takes extra time to feed, bathe and change a child who can’t help with these things. There are extra pressures, more appointments, difficult conversations with professionals. All of this takes physical and mental energy. There is little benefit to a child of doing all the physio someone recommended but having a mother who is losing her mind.

Sometimes you have to just batten down the hatches, recognise your capacity at that point, and accept that you’re doing your best right now. If someone asks how Sam is and I can reply ‘fine’, then we’re doing well. So your kid hasn’t done their exercises, but you’ll probably never know if they would have made any difference, and meanwhile they are clean, fed, apparently happy (or not actively unhappy) and, most of all, loved. You might even have read them a book. That’s all that really matters.

 

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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.

 

 

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!