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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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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Looking for Alice

I love art and have, for a long time, spent as much of my time as possible visiting galleries, looking at sculpture, paintings, photographs. These days I am as likely to use my Tate membership to take a small child to the members café as I am to appreciate an exhibition, but recently I discovered a new (to me) photographer. I had that thrill of connecting with her pictures in a way that made me feel like today had been a good day, that the time I had spent looking at those pictures had improved the quality of my life.

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That photographer is Sian Davey and the book I discovered is ‘Looking for Alice’, a collection of photographs of her daughter. Alice was born with Down’s Syndrome and Davey’s project has been to photograph her daughter as she accommodated the shock of a baby who was different to her other children, and fell in love. Alice is the same age as Sam.

These photographs are beautiful. If you knew nothing of the intent of the photographer, did not know that a mother was holding the camera and that the girl was her daughter, you would find them to be stunning images. They are part of a photographic tradition of focussing on the domestic, of examining what is in front of you.

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If, like me, you read Davey’s essay accompanying the photographs, you would hear her voice:

‘This is a story about love and what gets in the way. This concerns all of us, my daughter’s diagnosis is only one aspect of it. The rest is about yours and mine and indeed society’s relationship with ‘difference’ of all kinds – this is what Alice is inviting us to reflect on.’

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I can’t help but believe the personal to be political. I don’t think you can be the mother (or indeed parent) of a child who is ‘different’ and not politicise the way you see the world around you – from the way people are treated, included or not, to the effects of social policy, education and healthcare. I have come to realise that much of the prejudice and problems experienced by disabled children and adults come from fear and ignorance of individuals, society and the state. It is easy to think of some people as different if they look different (or behave differently) to how you perceive a child or adult should look and be. This inevitably leads to thinking it is okay to treat them differently.

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Davey is explicit about the fear and uncertainty she felt after Alice was born, and how these feelings dissipated as her love grew. I can’t believe that anyone could look at the photographs of Alice and not see that she is a girl who, as her mother describes, has the same needs and feelings as any other child. It is also blindingly clear that she is a loved member of her family, not least because one cannot ignore the fond gaze of the camera.

Sometimes I feel like a member of an invisible club – one of parents diligently and quietly learning from their ‘different’, often disabled, children and using their children to try and change the world in ways big and small. It is an unashamedly domestic beginning for a political movement, and I am only one of the latest in a long line of mothers and fathers trying to make the world a better place for their children. Because surely our society is only as good as the way we treat those without advantage and privilege.

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Families are messy, imperfect things, constantly shifting and adapting yet consistent and supportive. For us, and many others, our family is where disability is the norm rather than the exception and is just part of the mix. How wonderful it would be if we felt that was the case beyond our front door.

As Davey writes

‘(Alice) is now in the middle of everything that we do as a family, and is loved unconditionally, as it should be. I can’t help but wonder how it might be for Alice to be always valued everywhere, without distinction, without exception, without a second glance.’

There’s nothing to be afraid of. Alice, and Sam, are just (small) people. There is much to value.

A House for Sam

We are adapting our house to make sure it works for Sam. We have moved out and have so far paid builders thousands of pounds to rip things apart and make a perfectly good house look like it’s been hit by a natural disaster.

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(Photo – what will be the lift, lift lobby and therapy/play room)

It’s a big, disruptive, expensive construction project of the kind we (hopefully) will only do once. We plan to move back in to the house next year and then never move again. Or at least not until the house doesn’t suit Sam any more, which we hope won’t be for an extremely long time.

This kind of project throws up a host of issues on every level from extremely detailed (what kind of sockets?) to big questions about the way we want to live our lives. Decisions about designing your family house go to the core of who you are and how you live (or want to live). I’m an architect and these are the issues that first drew me to architecture: how do buildings reflect who we are as people, what we care about and what we do day-to-day. This stuff is deeply personal and others in the same situation would make different decisions. We are extremely privileged to be in a position to be able to craft our house so carefully.

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(Photo – hole for the lift in what was the kitchen)

Most buildings in the world are inaccessible to Sam but we can create a little island of utopian level access, where he can go (almost) everywhere and everything is designed to make all of our lives as easy as possible.

But how do you adapt a house for a disabled person who is currently six years old but will hopefully still be living there when they are twenty six?

How to you make a house perfect for the disabled child, whilst not compromising the personality of the property and making it a house for our whole family?

Should we compromise on the kind of house we want to live in to make it disability-friendly? Is it possible to have have a house that works perfectly for a wheelchair user but that isn’t the first thing you notice?

There are two principles that we have had from the beginning: the house needs to feel like a family house, specifically OUR family house with all of the characteristics it would have had if Sam wasn’t disabled; and the house needs to work perfectly for Sam and enable social connections for him – between family and with visitors. We are currently hyper-aware of some of the downsides of being in a house that hasn’t been specifically adapted. It’s getting harder to give Sam a bath, and even small changes in level get harder to get his wheelchair over as he gets heavier. Because it’s less easy to carry him, Sam rarely comes upstairs to our bedroom or to Eli’s room.

If you go to as many adapted or accessible properties as I do, you’ll realise that ‘experts’ are often expert in how to make a house work for a wheelchair user and that isn’t the same thing as making a home for all of the members of the family in it. The cheapest and easiest way to adapt houses is often to tack an extension on to the back. This makes lots of sense, except it often involves siblings and parents sleeping upstairs and the disabled child never going to their bedrooms. If, like Sam, the child has carers then you can end up with unofficial zones within the house where the disabled person and carers spend most time in particular parts of the house and there’s not enough crossover with other members of the family.

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(Photo – widened doorway)

Sam will be at the centre of our house, literally. There are three floors, and his bedroom will remain on the first floor. We will all pop in and out, or wander past, his room all the time. It also means we, as parents, remain totally involved in every aspect of his life. Even if there are days when carers are spending most time with him, we are there in the background interfering and suggesting, as is the prerogative of a parent. This will be facilitated by a through-floor lift that will take Sam up to his bedroom, but also further up to our bedroom and Eli and Stella’s.

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(Photo – Sam’s bedroom)

Downstairs we will have normal reception rooms (one for family-only since we so often have carers in our house now) with wide doorways, a lift lobby big enough to turn a massive wheelchair and level (or near level) floor finishes. Not a single step on the ground floor. One should not underestimate what a feat this will be involving much chat about thresholds, demolishing a conservatory and building a new dining room. We will have a patio on the same level as the kitchen and dining room, which will ramp down to the garden. Sam will use the same doors as all of us and it should be a mere matter of pushing him where he wants to go, without bumping over ledges and going through alternative doors. The rooms are big enough that when Sam is in even bigger wheelchairs we will still be able to get round him. There will be enough room around the dining table that he should be able to sit anywhere, not just in the one spot that means we can still walk past.

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(Photos – demolished conservatory, building new dining room)

The house will have pieces of specialist equipment, at vast expense, though actually these aren’t as numerous as I anticipated. You don’t need that much stuff if the whole design of the house is built around the idea of a wheelchair being able to get everywhere. The lift is a massive thing (physically and in expense) but a simple idea. There will be track hoists mounted on the ceilings of four rooms (which will mean Sam can be lifted in a sling between wheelchair and bed, for example, rather than being lifted by us). There will be changing facilities on two floors. And there will be a bath.

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(Photo – what will be Sam’s bathroom)

The bath has the subject of much conversation. It is, apparently, easier to shower people in wheelchairs. Easier for carers that is. But we generally operate on the basis of what Sam likes and needs, rather than what suits others. The boy loves baths, so we need a bath. And if that’s a whacking great big thing that goes up and down, needs the floor to be strengthened and a new heating system to produce sufficient hot water, so be it. It will be in a bathroom with two doors – one straight in to Sam’s room so he can go bath-to-bed in one carer-friendly straight line, and one on to the landing that leads to his brothers and sisters bedroom. Because the bath is essentially just a really expensive bath and so it will be the bathroom for all the kids.

We are lucky to be able to ask ourselves how we want our family to work, and therefore how we want our house to facilitate that, and to have the opportunity to alter the fabric of the building accordingly. It is all very exciting but it feels like a huge responsibility – like all construction projects, we’ll only get to do this once and we need to get it right.

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(Photo – looking up three stories of the house through the hole made for the lift)

A friend of mine joked that once we have adapted our houses our kids will be able to visit each other, if not anywhere else. It’s not really a joke – as Sam gets bigger and his wheelchair gets heavier it is becoming harder for us to go to other people’s houses with him and we can’t visit places that don’t have disabled access. So the political becomes personal – we want to compensate for the world remaining inaccessible by making our house a truly welcoming place for Sam and his friends.

 

 

 

‘Looking his best’: attitudes towards wheelchairs

I have been thinking a lot recently about we approach Sam’s wheelchair. I have written before about the differing perceptions of wheelchairs – particularly, how once you are over the psychological hurdle of not walking, wheelchairs are freeing, wonderful things that can compensate for legs that won’t support a moving body. It’s a very simple and elegant solution to a problem. I think the outsider perspective that wheelchairs are constrictive and negative is largely based on someone’s fear that their own legs might stop working. Restrictions placed on wheelchair users are largely a result of the environment around them being inaccessible rather than the inherent disadvantage of using a wheelchair. Perceiving wheelchairs as negative isn’t inevitable – Eli loves having a turn in Sam’s chairs and sometimes wonders whether he’ll have one when he grows up.

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When Sam was small we were fearful of him not walking (though it became clear pretty early that this was likely). When he was young he was in a buggy, which was age-appropriate and no big deal. As he got older he moved into a specialist buggy, and then into a paediatric wheelchair. We needed time to get used to each stage; they were harsh physical reminders to us of his disability. But we accepted and adapted, and actually his inability to walk was towards the end of our list of worries. Sam’s difficulty with eating and communicating were (and are) harder for him day-to-day and have more impact on his quality of life than his inability to walk.

I still don’t love his wheelchair – I don’t think it’s designed that well, or looks that nice. It was given to us by wheelchair services. Considering how much time we spend looking at and interacting with it, I’d quite like to be more involved in the choice. I sometimes resent the difficulty of manoeuvring it around, the fact it means we can’t go in some buildings or use lots of public transport. It’s hard to clean and occasionally bits fall off. But Sam using a wheelchair, and us therefore being able to go to ice rinks, museums and parks, is infinitely preferable to us being stuck at home. He is perfectly happy in it.

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I recently read a blog by Tonia Christle, a disabled woman, about her experience for growing up with a cerebral palsy. She writes about the early years:

‘I am five. 

My family likes taking pictures of my sister and me.  We like being the same.  Our clothes match, but not our bodies, because I have a walker and my sister doesn’t.  When we get our pictures taken, our family likes us to be the same, too.

They like me to stand without my walker.  They say it’s better that way.  They are grown-ups, so I listen.  I stand leaning against a wall, or hanging onto a chair or a cabinet, or my sister.  Just as long as my walker is not in the picture.  My walker makes me worse, so I stand far away from it.

I want to look my very best for the picture so I smile, hanging on very tight so I don’t fall.

My family never came right out and said they wanted “normal” kids.  However, as a young child, I listened to the way my family spoke about me and my adaptive equipment (which is very much a part of me.)  And, though I am now in my thirties, pictures of me with my walker, crutches or wheelchair are rare finds.  Many pictures are portrait-style and don’t even include my legs.’

I am definitely guilty of this to some extent. We have plenty of photos of Sam in his wheelchair (or home chair, or standing frame, or walker). But we also have photos where we have taken him out of his wheelchair so that the chair isn’t in the photo, so he ‘looks his best’. I have taken photos of his face (not his body) because I think this is most photogenic (which is partly because, of course, his face is VERY photogenic in my entirely unbiased opinion!).

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(I’m not pregnant again – old photo to illustrate our normally unsuccessful attempts at group family photos)

We presume competence with Sam (we assume he can understand everything we say), and I try not to let anyone talk in front of him negatively, but I hadn’t really thought about the impact of talking about his equipment.

‘Your child is unique and special because they use adaptive equipment.  It is something to celebrate, because this equipment allows your child the freedom to live the life they want to live.’ Tonia Christle. (emphasis added by me)

This idea of embracing the equipment is crucial if you are the parent of a disabled child, and involves a bit of a mindshift. It takes time, and we are getting better (I hope) as Sam gets older. Being a good mother, and ally, depends on accepting Sam as he is. That means embracing all of him and his aids. His wheelchair makes him better, not worse.

We must accept this not just in words and intention, but in the everyday: in our photos of this time in his life, in how we talk about his equipment. Don’t talk about how annoying his wheelchair is, how cumbersome, or how ugly. Don’t deny how intrinsic it is to him. Don’t let anyone else talk this way in front of him either.

This is obvious. We are careful to talk to our kids about what they can do rather than what they can’t. We talk positively about disability, equality, difference. We need to remember to include Sam’s equipment in our acceptance of his difference.

I was reminded of this revelation by a recent exhibition in London of paintings by Lucy Jones  . Jones is a talented, successful artist who happens to also have cerebral palsy. She has painted self-portraits throughout her career and this exhibition includes a self-portrait with her walker.

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An essay about her work describes the context of her self-portraits (which includes feminism in the 1970s), the effect of prolonged study of her own body, the depiction of her disability:

‘In Lucy in the sky 2005 she wanted to say something about being happy, about feeling safe. She is out walking, with her wheelie; she can’t fall over and is free to go anywhere. The painting started with her face, then she added the black and red top, after that the pale blue trousers. Then she had to decide on the background.’ Sue Hubbard, ‘Becoming Lucy Jones’

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Jones’s disability is represented in her paintings and is part of their creation. She talks about how as her confidence grew through her career, she began to paint more of her body, to paint the ‘awkwardness’ of how she looked with CP. These paintings are about how she sees herself, how others see her, and what others project on to her. The paintings describe her coming to accept her walker as being part of who she is, and having the self-confidence to represent it.

The reality of disability is that much is projected on to disabled people and often the problem is with other people’s perceptions rather than the disability itself. The aids and equipment are helping, they’re not a hindrance, and we should treat them as such.

We mustn’t make Sam think he is less because he uses a wheelchair, but rather try to help him have the self-confidence to use it proudly.

 

References:

Tonia Christle blog: http://www.ellenstumbo.com/growing-up-with-a-disability-the-preschool-years/

Sue Hubbard’s essay ‘Becoming Lucy Jones’ in Lucy Jones: Looking at Self, Momentum Publishing, 2006

Exhibition: Lucy Jones –The Cycle of Life, Flowers Gallery until 21 May http://www.flowersgallery.com/exhibitions/view/lucy-jones

Making our own fun

It is the Easter holidays and like thousands of parents around the country, we are in the midst of filling the time with fun, Last week I thought we would try a cycling session at a velodrome.

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Wheels for Wellbeing run sessions at the Herne Hill Velodrome where they have a variety of adapted bikes and trikes for people to try, though we actually took our own wheels. The velodrome has a professional track with junior cyclists zooming round at high speed, and a flatter track in the centre where children and adults, with various disabilities or none, were cycling around on adapted bikes or trikes – some hand-powered, some with platforms for wheelchairs, some with two seats.

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There were very friendly, helpful people around. One of whom suggested we try some mittens to help Sam keep his hands on the handlebars. He went and found and gently fitted Sam’s hands into them, and they worked so well that I have since bought some. Then we bumped into a boy from Sam’s school, and Eli, Sam and he did some races round the track. We were there for an hour and it was fun.

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I don’t want to paint too romantic a picture of this outing: because it is actually impossible to co-ordinate the feeding and sleeping routines of three children, Stella was hungry as soon as we arrived so I unpacked Sam’s trike to the sound of her bawling in the car. As the helpful man was fitting Sam’s hands into the mittens, I was breastfeeding Stella under my jumper while walking around and making sure Eli wasn’t crashing into anyone. Elegant it was not.

It was raining for a lot of our visit, luckily not too heavily (not least because I’d accidentally left the car sunroof open) but I refused to let it put us off. If I have managed to get all of us to a velodrome with everything we require and no major meltdowns, we are NOT going home just because we’re getting a bit wet! Even if I have negligently put Eli in a sleeveless coat.

When I mentioned the idea for this trip to James that morning as he headed off for work he said it was a brilliant idea but noted that it was also so ambitious that I might be nuts to attempt it. He’s right, it’s easier to stay at home where everything is familiar, but more fun to go out. Especially to new places, with welcoming people. And lovely for Sam to see a friend from school. A velodrome! Awesome!

I would love for Sam to do more things like this, where he could meet other local kids and make friends. Maybe even without us. But that appears to be near impossible.

A social worker phoned me in September last year and asked if she could come and visit us. I didn’t know what had brought us to to her attention, but she soon came round one day after school. Since she didn’t seem to need to interact with Sam, he stayed upstairs with a carer and I sat with the social worker in our kitchen for an hour while she asked questions and I answered them.

I had never met her before so I described our day-to-day lives. She agreed that Sam needs were complex. She said she could see our lives were difficult, with the tilted head and sympathetic voice that is so irritating. She asked how we were coping, but offered no practical help because I said we were doing okay.

When she asked what help we needed I said I would like some holiday activities, or weekend clubs, or any kind of extra-curricular activity for Sam that was with other kids and not initiated by us. We can find fun things for Sam to do and fill his days, but we can’t create a peer group for him to do it with, and this is what we need help with.

I said that, as far as I know, there are no holidays clubs in our borough for children like Sam and she agreed. I found one last summer in another borough and she said I should keep looking for things like this, and that when I found them I should contact her team in plenty of time and they would see if they could fund Sam’s place. Which was nice of her, because I definitely have lots of time to be tracking down holiday playschemes, liaising with local authority bureaucracies and checking they understand Sam’s condition.

I had heard of an adventure playground in a neighbouring borough that runs weekend activity sessions for kids like Sam, and asked the social worker if he could be referred to this. She agreed that it might be suitable, but warned me that there was a very long waiting list. That is not surprising, because multiple boroughs like ours don’t provide anything like this. Fine, I said. As far as I was concerned, this was obviously the start of the referral process. She had asked what I wanted, so I had told her. She was taking this forward. Right?

Six months later I hadn’t heard anything. Wow, this is taking a while, I thought. But when I called to check, the social worker denied any recollection of this discussion. She said I hadn’t asked for any referral and so she had not done it. She was more interested in telling me that I was wrong than in actually starting the referral. It turns out we need to be assessed, and the assessment needs to go to a panel, and if they approve funding Sam, only then can Sam be put on the very long waiting list for the playground.

I have since had conversations with other members of the team, and am still waiting for an assessment. So we haven’t even got to step one. Meanwhile, each of these conversations has made me feel really uncomfortable – the only way to get anyone to even think about starting this referral is to ask, repeatedly, for help, something I find hard to do. It seems like I am really putting social services out by asking for assistance and I appear not to have the language to make myself understood or to have a conversation without getting upset. I know we are not in dire need, and plenty of people are worse off, but why is it so difficult to access support which other boroughs (and most reasonable people) recognise is important?

I am asked exactly what I want, which I’m not certain of because I don’t know all or any of the options. The whole thing has to be framed in terms of us ‘needing respite’, because presumably trying to help a six year old boy make friends isn’t sufficiently urgent. We probably do need some respite, but even saying that makes me feel like I’m letting Sam down.

So we will carry on organising our own fun, and lots of fun there is to be had. We’ll go cycling again and try to find other welcoming activity groups. Luckily Sam has an enthusiastic brother, carers with energy and initiative, and an easygoing personality, but it would be really lovely, and a huge relief, if our borough showed some interest in helping disabled kids be children rather than ignoring them.

Sister Stella

Sam and Eli’s sister, Stella, is four weeks old. We have survived a month with three children, something which feels like no mean feat.

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That seemed unlikely after our first family outing one week in, when we made it just 100m from our front door before Eli broke the rules about how far ahead he was allowed to go on his bike, we shouted, he started crying, Sam started crying because Eli was crying, and we all went home. Since then we have managed a family swimming trip and some less eventful local walks. So we might actually be capable of leaving the house as a family of five.

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Both boys have been unbelievably sweet with Stella, and very tolerant of the disruption and imposition involved in having a new-born sister. Through a combination of James having a month off work, numerous carers and family members helping us out, and a baby that sleeps a lot, we have been able to keep things as routine as we can. Sam has shown once again that he can cope with a lot of change and take it in his stride, while Eli has been demonstrating his capacity to be both a kind big and little brother. We have all had a lot on, but we’re doing okay

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We do not approach birth lightly. Sam’s disability is because of problems during his birth and we therefore know too much about the risks of things going wrong and having lifelong implications. Eli was ill immediately following his birth and had to be admitted to NICU. We sort of assumed that our third baby would end up in NICU, even though a neonatal consultant took the time to explain to us how (very) likely it was that we would have a totally healthy baby.

One of the people who really understood our concerns about the birth of this baby was the obstetrician who we saw throughout this pregnancy and who had previously delivered Eli. She is someone we have huge respect for, whose judgement we trust, and who had successfully guided us through my second pregnancy when we were at our most anxious about having another child.

This time we knew in advance that she would not be able to deliver the baby because the elective caesarean was booked during the Christmas period when she would be on holiday. Another obstetrician would do it, it would be fine, we told ourselves. As we prepared on the morning of the birth, getting in to gowns and talking photos of my puffy face, we were calm but nervous. And then she popped her head round the curtain to say hi. Dressed in jeans and tshirt, she was officially on holiday but had come in specifically to do my caesarean section.

That, there, is an emotional moment: the joy of knowing we were in her hands (literally in my case), that our baby had the best possible chance of therefore being fine, that someone so thoroughly understood how difficult this all was for us and had come into work especially.

And then Stella was born, screaming before she was out of my womb, to be immediately declared, with a thumbs up, totally and utterly healthy by the neonatologist we had demanded be on hand to check. No resuscitation, no breathing difficulties, no-one at all worried about anything. She breastfed immediately and, following the facilitation of the obstetrician who knows we spend too much time in hospitals, we were able to go home the following day. You would not believe how uninterested everyone is in a healthy newborn baby – barely any observations, no-one came to check her overnight. If you hadn’t had experiences like ours you would have no idea of the anxiety and stress lurking just across the corridor in the neonatal unit.

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We have now had four weeks of admiring and nurturing little Stella and she is a delight. Third time lucky, we had a baby who didn’t need a canula in their head, or a tube in their nose. She immediately breastfed and sleeps like a champion (just not always at night-time). We take none of this for granted – it is luck of the draw whether you have a baby that does the basics easily or not.

We have not lost and will not lose sight of what a privilege it is to have her here with us, healthy and thriving. Nor what a delight it is to share this baby girl with these boys of mine. We are all lucky.

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Brain surgery

Sam had brain surgery last week. It was an elective operation, in which electrodes were inserted into his brain. These are connected to a battery pack about the size of a cigarette packet on the right side of his tummy. The idea is to try to reduce his dystonia and therefore give him a bit more control over his body. It’s called Deep Brain Stimulation.

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Sam spent a week in hospital after the surgery. He was discharged yesterday and is now back at home – recovering well but still in discomfort. We are relying heavily on paracetamol and films.

We chose for Sam to have this surgery. We entered in to it open-eyed – we knew the risks and we knew it would be hard. We hope that the benefits of reducing Sam’s dystonia, and therefore his disability, will outweigh the pain and disruption of the procedure. We thought hard about whether the gains would be enough to compensate for Sam never again being able to trampoline (in case the wires that now run down his neck snap), and not being able to swim for three months.

Having a child go through major surgery and recovery sends you into a hole. The intensity of the emotion and the level of care required is enormous and exceptional.

It feels all wrong to spend your child’s life taking so much care over who looks after them – we have never previously left Sam with anyone except trusted family, carefully chosen carers, at nursery or at school – then leave them with a group of doctors and nurses who you have only just met, and who are going to do unthinkably invasive things to him while he is unconscious. These places are so weird – full of people for whom this is all in a days work, while James and I are reading Sam knock-knock jokes and trying to convince him and ourselves that everything is going to be okay.

The six hours that Sam was in surgery felt like being in the eye of a storm. Everything calm and controlled, but filled with anxiety and waiting for the call to say he was in recovery. I tried not to dwell on the thought that if Sam’s brain was damaged for a second time I would never forgive myself. Then the call comes, and in we go, and the storm sweeps across us all.

We only really emerged from the swirl of hospitals, and cannulas, and exhaustion yesterday. Here are a few thoughts as we come into the light.

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When Sam has been in hospital previously, we only had one child and this time we had two. This made a bigger difference to our ability to cope than we expected. Someone who knows Sam well needed to be with him all the time – partly because he was sensitive and sad, mainly because he can’t communicate with anyone who doesn’t know him beyond crying. I had created a rota on a geeky spreadsheet to ensure there was always someone with Sam and someone with Eli, but the reality of organising it was so tricky.

The easiest solution was to largely have me or James, or both of us, with Sam and for Eli be with family and carers. We knew he’d be confused and annoyed, but hoped new Playmobil pirate sets and promises of cake would get him through. And it did for the first few days. Then, he realised that he hadn’t seen his dad for three days and Sam wasn’t at home. He didn’t understand why last week he’d been on holidays with the four of us hanging out all day, but now he never saw his parents in the same place, his brother was in this mysterious hospital place, and we kept trying to offload him on other people. He was so confused. At one point the fact that both of our kids were struggling nearly broke me. Things improved a bit once Eli started visiting Sam at hospital, realised he wasn’t too far away and just looked like Mr Bump, and found out that hospitals have not only play rooms but also cafes that sell croissants.

I am raw to Eli’s feelings about all of this. He shows such insight and accommodates so much. On the day before surgery, he asked where we were going to be while he was staying with my sister. We explained (again) that we would be at the hospital with Sam, that he was having brain surgery, that we hoped it would help Sam control his muscles. His first question was, ‘Will Sam be able to eat after the surgery?’. No, he won’t. But the three-year-old is asking all the sensible questions. Be still my heart.

Pulling together

I’ve said it before, I’ll say it again. Our family is kept on the road by us all pulling together. For eight days I have spent up to 15 hours in a small room of a hospital. Sometimes with company, largely on my own with Sam, reading The Twits for the sixth time and eating fondant fancies for lunch because I can’t leave Sam for long enough to buy a sandwich. It’s not been that much fun.

But being James has been quantifiably less fun. James did six night shifts with Sam in a row. We were meant to alternate but the kindness of my husband and the frequency of my tears led to him doing every night. These were nights of Sam being miserable, almost no sleep, frequent observations and intravenous antibiotics. This last week, our family has been kept together by this man.

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Sam and James developed an amazing kind of symbiosis from spending all of these hours together in adversity in a small room. By the end of last week James knew what Sam wanted or needed from the smallest facial gesture or the subtlest wriggle. He knew when Sam wanted to be held, or how to get him to sleep. Oh man, these boys of mine.

Meanwhile, our families have been at our beck and call. My sister Maddy has once again proved that her capacity to sit in hospital rooms for hours is one of her most valuable skills (photo below of Sam and her just before his surgery). Along with looking after Eli for days despite him almost continually insulting her.

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It will be okay

So here we are. We’re on Day 9 and Sam is well as he could be. It’s all held together with Calpol and constant entertainment, but we’re home.

A few weeks before the surgery we had a party to celebrate our new house and summer. It was our normal combination of friends, prosecco and semi-naked small children. Uncle George brought his decks and at some point before bedtime he played this song: Can’t Do Without You by Caribou. James and I went to Latitude Festival in July and we arrived, via horrific food poisoning, an emotional final assembly at Sam’s school and six hours of Ipswich traffic jams, to Caribou playing this song on the main stage. I love it.

As we then danced to this song in our garden at our party a few weeks later, with James holding Sam and Eli jumping around, I had a moment. A little bit of clarity that Everything Is Okay – Sam is happy, our family is amazing, and we can all dance together at a party with our friends on a summer evening. I imagined looking at us from the outside and thinking ‘they look happy, that little family of four’.

As I sat in the hospital room when Sam was in surgery I listened to this song. As I stood in our kitchen at midnight during the last week, having just returned from the hospital but needing to make Sam’s meals for the next day before I could go to bed, knowing that I needed to be up at 6.30am to get back to Sam and James, I played this song. I imagine that many people associate this song with taking drugs on dance floors, but it’s become my anthem of Deep Brain Stimulation. I absolutely cannot do without my little gang of boys, we just need to get through this little patch of discomfort.

‘Earthquakes, and the Light They Let In’

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Kate Gross advised Prime Ministers, set up at international NGO and had two boys. I didn’t know her, but she was by all accounts brilliant, committed, and a good friend of a friend of mine. Aged 36 she died of colon cancer. In her last year she wrote a book, ‘Late Fragments’, in order to create something while her life was narrowing and write down the things she wanted her friends and family to know. It’s a powerful book.

She and her family have experienced a kind of heartbreak that I am so fortunate to not fully understand. But much of what she writes about does resonate with me: how she has found herself reacting to the worst kind of adversity, what is important when the shit hits the fan, and unexpected silver linings.

She describes the sadness and horror following her diagnosis, and a period of misery, but also how at some point she found the sadness settling in and leaving space for other things. I recognise her description of coping with a change of circumstance that you neither anticipated nor wanted, that ‘I am not unusually unfeeling, but am basically wired for happiness’. One finds a new normal.

People often commiserate with me about how tough our lives are, and ask how we cope. The answer depends a lot on what mood I’m in, and how well I know the person asking, but broadly: we now know no different. This is our normal. It is entirely accidental – there is no rhyme or reason why my child is disabled rather than yours, but he is, and there’s only so long you can spend letting the sadness take over. After the ‘quake’, you find a way to accommodate the changes.

‘The tough bit is not the start, it’s the bit where you just have to put your head down and keep going; it’s an endurance sport. Living with the after-effects of the quake is much harder than surviving the initial impact. There is a point when everyone else has gone back to normal life, when the spotlight isn’t on you and your crisis any more, and it is then that things are at their toughest.’

And no-one understands that, and so much more, better than one’s immediate family. Gross describes her love for her sister, and her feeling that she’s letting her parents down by dying.

‘Of course they will have their own distinct grief. But they will keep it to themselves. They know this story isn’t about them. So they are there in the background, making things good. Encouraging me when I need courage. Reading to my children when I am too tired and broken to do it. Leaving food in my freezer, mowing the lawn, replacing the lightbulbs, quietly making every little thing all right.’

If you have a family who you’re close to, both physically and emotionally, they are the ones providing the scaffolding. We didn’t choose to have a really sick child who turned out to be severely disabled, and nor did our families. The effect on James and me is obvious. Less clear is the impact on our parents and siblings who have the fierceness of their own love for their grandson or nephew, but also have to watch us struggle. Their lives, both emotionally and practically, are shaped by Sam’s needs. They help and support him and us, willingly and uncomplainingly. The ripples from the quake spread wide.

Which brings me to the last of Kate Gross’s eloquent points about a life lived in adversity: ‘Earthquakes, and the Light They Let In’. If your life is not always easy, then you develop a fine appreciation of the ordinary being extraordinary. For me: a child who kisses you spontaneously, or who can run in the rain, or another child who has spent five years trying to rub his own eyes and has just learnt how to do it.

If you have had enough sleep to lift your eyes and look around, there is much to be thankful for. We are here. We have beautiful boys who force open the chinks and let the light in.

Photo: Big Smile Photography

Sam’s Dad

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If I could undo Sam’s disability I would. I don’t have any time for the idea that it is part of some plan, or that Special People have Special Children, or that this is the way Sam was meant to be. Sam was a healthy, fully able baby in my womb, then his brain was damaged and now he is disabled. When he is older he can tell me what he thinks, but in my view it would be better if he wasn’t disabled. There is almost nothing that has followed from his birth I wouldn’t give back in order for him to be able to walk and talk. Of course this becomes more and more theoretical as he gets older, and we can’t imagine him any other way.

Sam is disabled, and he can’t walk and talk. But Sam is happy and healthy so we must get on with it.

However, one thing that I know now, that perhaps I wouldn’t have known quite so clearly without Sam’s disability, is that I married the right man. I am lucky. For this I am extraordinarily thankful.

Last week marked the anniversary of James and I getting together exactly fifteen years ago, when we were undergraduates spending too much time watching Neighbours and drinking too many pints of cheap lager. In the following ten years we had many adventures and a lot of fun, travelling frequently and building careers.

Then, five years ago, when Sam was born everything changed. I have no doubt that I wouldn’t have made it through the first year of Sam’s life relatively unscathed if I hadn’t had James. We were worried and sad. It seemed hard to have fun. But at least we were doing it together.

There is no equivalent to the shared responsibility of parenting, the person who is as interested as you in some domestic anecdote about something your child has done, who is as pleased as you are with a small development. I have taken on the majority of day-to-day care and co-ordination of Sam’s life, but James is always there listening, commenting and encouraging. James can do everything for Sam that I do and will do it happily, be that getting up almost every night with him for 6 months when I was breastfeeding newborn Eli, or feeding him and giving him cuddles.

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I do not take this for granted. Statistics about relationships of parents of disabled children are chilling: you are more likely to separate if your child is disabled. The combination of demands (physical, financial and psychological) and stress are too much for many couples.

I can’t help think this isn’t helped by many professionals addressing themselves almost exclusively to mothers. We have had numerous experiences in hospitals, clinics or at home where people talk to me and ignore James. They do not ask his opinion, or literally talk to me about Sam with their back to James (for example, about the risks of an impending general anaesthetic).

But it is a fundamental misunderstanding of the dynamic of our family to think James isn’t interested or involved in Sam’s day-to-day life. It is not only insulting to James by minimising his role as Sam’s father, but also puts more pressure on me as the one who should know everything and shoulder most of the responsibility.

It also doesn’t account for my notoriously unreliable memory versus James’s ability for near-perfect recall. Or that James combines all this parenting with a full-time job. Or that, for example, he’s taken a day of leave from that job to be sat on a hospital ward being ignored by a junior doctor.

Sometimes I look at my kids and I almost can’t cope with the amount that I love them. I felt like this about my younger sisters when they were small – I sometimes almost crushed them with cuddles. Like yesterday when I collected Sam from school; I walked in to his classroom and he was so obviously happy to be there, and then saw me and looked like he was the happiest he had ever been.

The only thing better than that feeling of fierce pride and overwhelming love is witnessing it between your husband and your children. He loves them as much as I do, and we are all Team Sam.

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