Changing Places

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Choosing what kind of mother to be

Note: This is more about me than Sam – low on anecdotes about a seven year old, high on analysis of my life choices.

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(Marginally deranged photo of us at Legoland)

I’ve never been someone who planned my life. I never really thought about my wedding day until I got engaged, I never had a particular career plan beyond qualifying as an architect, I sort of knew I wanted kids but didn’t give much thought to what kind of mother I would be. Then I married someone who also isn’t particularly a planner, and so we pottered along planning what we would do next but not much beyond that.

The one thing we did plan was that we would live abroad. And through James’s job, in 2006 we were planning to move to Damascus. At some point during the preparations I was talking to a good friend who, encouraged by it being late and us both being a bit drunk, said he was really surprised that I was following my husband to another country, that of all the people to do that he didn’t think it would be me.

It really pulled me up short. Was he right? I thought of myself as a slightly bolshy feminist – had I succumbed to being a Good Wife? No, as I explained inarticulately. We had discussed James’s job applications and I had agreed to all of the destinations. I would qualify as an architect while we were in Syria, and anyway we were going to get to live in Damascus which was the opportunity of a lifetime. So no, I hadn’t compromised anything, I was choosing to do this with my eyes wide open.

I am currently a stay-at-home mother to three kids. What’s good about my approach to life is that having had no real plan for who I would be means I can’t compare expectations with reality. But I’m pretty sure I thought I would be working. And I definitely thought we would be living abroad with kids. And travelling a lot.

Some of those things I feel a bit sad about – it is tricky to travel with Sam and he hasn’t seen nearly as much of the world as I would have liked him to. Others make me feel a bit uncomfortable, and I recall the drunken 2006 conversation – have I drifted into being a Good Mother? Have I abandoned bolshy-feminist Jess for a life of wiping and school runs?

I have been thinking about this lately because it’s been a while since I did any paid work. Sometimes I wonder to myself why I’m not working – surely it would be possible to organise enough help to make that happen, surely someone would employ me? Maybe I’m being a bit pathetic and all of my reasons for being at home are actually excuses…

And then I do my annual lecture to some MSc students where I am asked to set out what being a parent of a severely disabled child is like. And amidst the descriptions of a typical day and complaints about social services, I count up all of the appointments Sam has had in the previous year to produce our very own stats which show that in 2016 Sam had 116 appointments. This is down from over 150 in 2015.

Cue: small gasp! The majority of those are therapy appointments (physio, OT, speech and language) and most of those are at home. At least sixteen appointments were to see doctors, dentists or hospital-based clinics. Others were to do with Sam’s wheelchair, or about equipment, or xrays, or community nurses, or school meetings. These aren’t unnecessary appointments – they are useful, constructive discussions with doctors, or crucial tests, or important reviews. We weed out and cancel the very few things that we think are superfluous, to avoid Sam missing school unnecessarily.

Some of these appointments, particularly home-based physio, can be done with a carer rather than me but only if we have a carer here after school which we haven’t for the last two months. Others need to be with James or me.

And that’s why I’m not at work. Because if you work part-time and your son has on average two appointments every week, your working week is going to be massively disrupted. Because the care of your son can only be delegated if you can find the right carer, a carer who will inevitably be challenging to replace when they leave. Because while the 22 different professionals Sam sees are in theory talking to each other, the reality is that Sam gets more out of all of them if I am talking to them all and making sure they are coordinated.

Add to all of this a large construction project while we adapt our house, three house moves within two years, and two other kids keeping me busy and I realise why I don’t feel like I spend as much time sitting around, or writing blogs, as I would like. I do, however, have time to take Eli to the adventure playground after school sometimes.

It’s an individual choice – I know mothers of disabled children who work and their children are no worse off for it. But for us, the juggle of doing all that these three kids require plus us both working would be too much. I have decided that will be me for now (there’s no inherent reason it couldn’t be James) and we are in a position for it to be possible. So I am choosing to work (and I mean work, anyone who thinks a paid job is harder than being at home with my three kids has not spent a week with said kids) at home. I shall not feel bad about it, I will feel proud (and less anxious than if I was trying to do a responsible job in addition to the other demands on my time). This is the right thing for me and my kids right now.

Right, better go, Sam’s got another appointment to get to…

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.

Different kids, different kinds of walking

If, like us, you take the view that your child’s disability is part of him and try your hardest not to be negative about it in front of him, how far do you take it?

Stella has just started walking. She’s 13 months and since working out how to take a few steps two weeks ago, she has been practising at every opportunity. She has the typical waddle of a baby and is totally unfazed by dropping to her bum every so often. It’s utterly joyful to watch. If you’re feeling at all depressed by the state of the world, I would recommend spending some time watching a sweet one-year-old walk around like a very tiny drunk.

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It feels like a privilege to watch a baby develop these skills and like a small miracle when they keep their balance and toddle off. We, more than most, appreciate the wonder of a baby learning to walk.

And because we are all so amazed we have spent a lot of time talking about it. Visitors comment on it. It can all be a bit of a Stella love-in.

I started to feel a bit uncomfortable about it. How does Sam feel about Stella learning to walk on her own? Is he sad that she is doing something he can’t? When we congratulate Stella does he hear an implicit criticism of him not walking? Was he not really thinking about it much until we all stood around going on and on about how brilliant she was?

I spent a day or two trying not to talk too much about Stella’s walking. Acting as if it was no big deal. Then Eli asked me if I was better at maths than him, and I wondered for a moment if I should soften the blow. But then I decided to tell him yes, I was. And I said I’m definitely better at maths than James. I do have an A Level in maths after all and neither of them do.

It struck me that we can’t spend the rest of our lives not being honest about who is good at what, and what one of us can do that the other can’t do as well. Some of our kids will be good at remembering obscure cricketers (James’s genes), some will be good at chemistry (my genes). Pretty unlikely one of them will be talented at everything – so they will all have to experience that irritating feeling of knowing your sibling is better than you at something. In Sam’s case, the nature of his disability is such that he will do lots of amazing things, but some physical skills will constantly elude him. Eli and Stella will do things that he can’t.

Obviously, accepting that fact doesn’t mean we need to ask questions like, ‘Isn’t it a shame that Sam can’t walk along walls like Eli can?’ (this did actually happen, achieving nothing except drawing everyone’s attention to the disadvantages of being disabled and tainting an otherwise pleasant walk).

I think we have to avoid this kind of direct comparison with all of our children (tricky with Eli’s constant questions comparing me to James, James to Superman, Superman to Spiderman, etc etc). Sam won’t walk unaided, but his school annual review lists ‘walking’ (with a supportive frame) under the list of What Sam Likes. Each child is on their own track and we should only compare them against their progress on that track.

 

Ultimately, I need to chill out and enjoy watching a small child negotiate going downstairs backwards and a four-year-old learn to write. These gross and fine motor skills are easy for parents to take for granted. Do not. See them for the incredible feats of co-ordination that they are. Hold them dear and cherish each milestone.

As a postscript that demonstrates that being an ally to my disabled child is still very much a work in progress, I should mention that I suddenly realised I had written this whole post without asking Sam what he actually thought. So I sat down with him and his eyegaze computer, and modelled what I thought:

‘Stella – walk – great’

I asked him what he thought. He chose:

‘I don’t want to do it’ … ‘Good’

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He then got frustrated that I was delaying him listening to The Faraway Tree.

Fair response. Jog on, Mummy, stop asking me stupid questions about my sister walking…

Sam is 7!

Sam is seven! We celebrated with, amongst other things, an egg-free chocolate cake that I whizzed up in our blender and gave to Sam through his feeding tube.

With every passing year I sound a bit more like my mum: “I can’t believe you’re seven years old! I remember when you were just a baby!” But it’s true – I am genuinely surprised that we have been parents for seven years and that Sam is so big and tall.

As with all recent birthdays, James made a Sam-themed video of the past year and we watched it with our family, projected on to the wall. I would recommend this as a way not so much of celebrating the child’s birthday, though Sam and Eli enjoy seeing themselves, but more as a way of congratulating oneself on another year of parenting. It is heartening to see how much children have changed and grown over the year, how much you have done with them, and ultimately how justified you are in feeling so tired (excerpt from birthday video below).

The other thing that we realise when we (James) make these videos is that there is always way too much material. We have done too much fun stuff and taken too many photos and videos to fit into one short film. It makes obvious that Sam is living a full life, with variety and fun, surrounded by loving family.

Just after Sam’s birthday he had an appointment at our local rehabilitation centre where wheelchair services, assistive technology and other helpful services are based. There are always all sorts of disabled people coming in and out for appointments. I was sitting in reception with Sam and Stella, waiting to be called. Stella was a bit grumpy because she hadn’t yet had her morning bottle of milk, Sam was happy watching a screen showing footage from four security cameras. A lady in a wheelchair was pushed close to us (and I have written that in the passive deliberately, because the person pushing didn’t ask her where she wanted to wait). She was an older lady, I would guess in her seventies, immaculately dressed and made up. She smiled at us and after a few moments said (as is common):

“You’ve got your hands full!”

I smiled and we had a brief chat about how old the kids were, how cute Stella was, how much she liked milk. Then the lady asked, as she looked at Sam:

“Is he able to go to school?”

“Of course,” I said. “He goes to a brilliant school which he loves, don’t you Sam. We’re just here for an appointment.”

I could see the pity-look appearing so I was even more positive than normal about both Sam and his school. But as she was leaving she said:

“It’s so hard for these handicapped children. So hard for their families. I feel so sorry for them.”

It was one of those times when I felt like I didn’t have the words to be able to explain to her what our world is like, what Sam’s life is like, how we (try to) treat him. I have no idea how or why she uses a wheelchair, or how old she was when she first used it, but clearly she has lived a different experience.

It’s impossible in passing conversations like this to say all I want to, but later I felt so sad that she assumed Sam didn’t go to school, that his life is somehow unbearably hard, that it’s okay to talk about him like that right in front of him. Clearly being disabled in some way doesn’t automatically educate you in how to treat disabled kids in 2016 (or 2017).

I don’t want to minimise Sam’s challenges – loads of things are tough for him, almost nothing comes easily, and much is really unfair. And as a family we sometimes struggle when Sam’s disability makes things more complicated for all of us. But right now, as a seven year old boy, Sam is having a good life most of the time (and really, which child is having a good life all of the time? I mean every kid has to tidy up or eat Brussels sprouts or go home some of the time). He has loads of fun. He laughs most days. He is loved. He is learning. He is thriving.

By way of illustration, between his sixth and seventh birthdays Sam:

  • Had a baby sister: tolerated Stella’s wailing, put up with a third of our attention rather than half, learnt to deal with her grabbing onto his legs and pulling his hair. And then got a new baby cousin, Ralph, who also sometimes likes a bit of a wail.
  • Learnt to cycle his trike on his own: whizzed round in circles, racing Eli and being unbelievably pleased with himself. He is still working on learning how to steer.

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  • Made really noticeable progress with communication: starting to eyepoint using his communication book to tell us things, more reliably telling us yes and no.
  • Made huge progress on using his eyegaze computer: using it almost every day, knowing exactly what he wants to do, reliably choosing stories and then navigating through them like a pro, using communication software to create messages that were totally appropriate to the moment.
  • Went on holiday to Cornwall and France: first flight for three years, loads of swimming and beach time, hanging out with family and friends, getting tanned (and on one unfortunate occasion burned), getting a new passport.

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  • So many jokes with Eli. So many lovely moments between these two boys.

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  • Started staying at a children’s hospice for the occasional night, didn’t seem to be traumatised.
  • Moved house, again. Visited the building site to review progress and try out his new lift. Before he is eight he should have managed yet another move, his sixth since he was born.

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  • Began to be hoisted (rather than manually lifted) for most transfers between chairs and beds: coped much better with this than his mum.
  • Listened to lots and lots of audiobooks: his bluetooth speaker and ipod have become essentials wherever Sam goes, and there’s therefore been less screen time, developed a love for the books of David Walliams (except the highly emotional ending of Gangsta Granny) and late in the year Harry Potter.
  • Finished his first year at a new school: totally smashed it, participated in a whole school play in his walker, another year of loving learning, fascinated by the Great Fire of London.

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  • Was increasingly contented: Sam has spent the last year less fractious and generally happier. We spend less time flicking though films to find the one he is happy to watch, less energy trying to entertain him in public places so we can finish our lunch. This is probably connected to us having more (paid) help, and Sam getting older and more mature, helped – we think – by his surgery in 2015. As long as we explain what’s what is going on or is about to happen, Sam is noticeably more able to deal with unfamiliar or demanding environments. Long may it continue.

As we celebrate another year of Sam being our son, I am so very proud of this boy (and still so very sad that seven years ago he was still in hospital). He is such a joy to us all, so filled with patience and humour and determination. Happy New Year everyone – let’s all hope we come across more Sams, less pity and more positivity in 2017.

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Where kids go to school

Eli started school in September. It has made me think a lot about how we educate kids with disabilities.

Eli’s school is a short walk away from home. It is a typical inner city state primary. Unremarkable for being similar to lots of other schools in London. Remarkable for being like many other schools which are also educating loads of kids with different needs, languages and backgrounds. I have been consistently impressed by how they have calmly settled thirty new kids into school and appear to be totally in control, while I struggle to keep three kids in any kind of order at home. Eli has been learning at a furious pace – generally uncommunicative about his day, he’ll then slip in some comment about how to spell a word, or write something, or tell us about numbers in a way that shows he is really soaking up the things he is being taught.

One of the reasons I liked the school when we originally looked round was because it seemed to accommodate difference well – it has specialist provision for pupils with autism, it has a dyslexia centre. It has the kind of diversity of kids you would expect of an inner London school. I believe these things are important.

(Sidenote: a teaching assistant who we loved at Sam’s old school once told me she chose her non-disabled daughter’s school based on it having a lot of kids with special educational needs and being well known for inclusion. People like that make the world a bit brighter.)

Out of the classroom, and purely by chance, it turns out we live on the same road as two other kids in Eli’s year and as we all troop up and down the hill every morning we have got to know each other. So within weeks of starting school Eli was being invited over, and James and I were getting to know other parents. We bump into parents from the school in other local places and stop for a chat. Apart from this being really fun for Eli, it has meant us being able to ask for favours; when Sam was ill, another mum collected Eli for me and brought him home. This is new to us and it’s brilliantly straightforward.

I was worried about Eli starting at a school where no-one knew Sam. Of course I was wrong to be concerned – within the first few weeks he had described his family with accompanying photos: ‘Me and Sam are lying in bed. Sam’s disabled and my bed isn’t that big so he sleeps downstairs’. Within the first half term the whole class had watched videos of Paralympic athletes and discussed overcoming adversity. As the teachers said at the time, the kids were too busy being impressed with Jonny Peacock’s speed to notice his lack of leg. Eli has the confidence to explain Sam’s disability when he needs or wants to and he knows it isn’t negative or something to be self-conscious about, it just is.

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So far Eli’s school is everything we hoped it would be. It is enabling the small ordinary interactions of living in a community. And in that respect, it is really – and unavoidably – different to Sam’s school experience.

Sam goes to school five miles away. It’s a really good school, and he’s there because we think it’s the best school for him right now. It takes about an hour each way for him to travel there and back every day. That is not that unusual – kids at Sam’s school come from all over London, in every direction.

James, a carer or I take and collect Sam two days a week. We chose to do that, so we see his classroom and his classmates, and have chats with his teachers and assistants. The other days he gets a school bus, like almost every other child in the school since. We rarely bump into other parents at the school.

Years ago, we looked at Eli’s current school as a school for Sam. They were willing to consider it, but he would have been the only physically disabled child in the school and they had no track record of teaching a child like him. We decided it was better for Sam to go to school further away that had proven expertise in teaching children like Sam, in helping them to communicate and in maximising their potential.

We think this was the right decision for Sam, but it means we removed him from his local community. It is only through our efforts to engage him in local activities outside school (and my reliably local family) that he will have any sense of belonging in our little bit of south London. As I have written about before, life is all about human connections and this is more important, not less, for children with disability for whom interacting is challenging.

In some ways this is where Eli comes in, as an unwitting but ever reliable social conduit. He invites his friends over, and then Sam is surrounded by boys playing with helicopters. Those boys, and their mums, dads, sisters and brothers,meet Sam and then recognise him in the street. They ask questions and get to know him. We take Sam to the Christmas Fair at Eli’s school, where he meets Eli’s teachers, other parents and kids, and really enjoys the Salvation Army brass band (obviously).

As ever, the path of inclusion never runs smooth, and Sam couldn’t meet Santa at the fair because the grotto was up two small flights of steps. But never mind – Eli told Santa he needed a present for his brother, who is disabled, and wasn’t there, and Santa handed it over. They both got books about the Lego movie so we are all now clear about exactly why Vitruvius (not that one) is so amazing.

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There’s an argument to be made that it makes sense to group children who need specialist input together (and no-one appreciates the expertise of really specialist teachers, speech and language therapists and technologists more than me). That it makes sense to have a critical mass of similar-ish kids in a school together. It’s kind of obvious, and I have sympathy with this point of view, not least because kids like to be with their peers and for some children, perhaps being the sole physically disabled kid in a school is not necessarily that bolstering an environment. I think it works well for Sam to be somewhere with kids that communicate like him, and professionals experienced in teaching kids like him.

It’s not good enough that at 8am every morning hundreds of children with special educational needs are being bussed around the city, sitting in traffic jams while they try to get an education, driving past the local kids who could have been their friends. It’s not good enough that the families of the kids on the buses don’t get to know local parents. How otherwise are they supposed to forge the kind of friendships that are based on mutual understanding of how you feel at 9am having used the cross voice at least five times to ask your child to put on their shoes/not get run over by a motorbike/stop walking on that bit of wall, when you have run to school as you tried to keep up with your child scooting too fast down a hill, and are now wondering if someone is going to give you a medal for remembering the bookbag?

Obviously, calmly loading your older child on to a bus arriving at your house at 8.15am can sound attractive in comparison to the 9am chaos, but is it right? Is it really the right way to organise an education system? Is it fair for disabled kids? And are we really doing right by our non-disabled children?

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(Unconnected, cheerful picture)

Let him shout (at Trump or anyone else)

In the dim and not-so-distant past when it seemed impossible Obama would be replaced by a misogynist as the President of the USA, I watched a video of someone protesting at a Trump rally. The internet was full of footage of protestors at Trump rallies, and inevitably Trump insulting the protestors, but this was different. Different because the protestor was a 12 year old boy, who has cerebral palsy, who uses a wheelchair, who talks using a communication device.

JJ Holmes lives in America and had been following election coverage by using his iPad to search for Trump events, typing the words in using his nose. He knew Trump had mocked disabled people and eventually convinced his mum to take him to a Trump rally so he could protest against him. She warned him it might get ugly but he wanted to go anyway.

He pre-programmed phrases into his computer before they went, so that at the rally he could shout slogans like ‘Trump mocks the disabled’ and ‘Dump Trump’. He could play the messages through his communication device by pressing a button with his leg (there’s a brilliant video of him using the button here. As it wasn’t that loud, his mother and sister chanted along so he couldn’t be drowned out too easily.

After a bit the supporters surrounding them turned rowdy. Trump heckled JJ from the stage and told security to ‘Get them out’, and they were jostled out amidst JJ’s wheelchair being shoved and some pretty horrible things being said to all three of them.

So…

I mean obviously there’s much to be depressed about in this little anecdote, and that’s before we even knew Trump would become President.

But out of the murk I find inspiration: a 12 year old disabled boy convinced his mother to take him to a political rally to protest Trump’s attitude toward disabled people! He programmed chants in to his communication device!

I can’t tell you how proud I would be to have raised a son who was so politically aware and knew the power of protest. A boy who knew he was disabled and knew that was okay. Who knew that Donald J Trump (as JJ refers to him) was wrong to belittle disabled people. Who was brave enough to go to an adult event and make himself heard. Who was willing to be heckled and shoved to make his point.

I would be so proud of my son for learning to communicate with his nose and his leg, and having the patience and determination to make himself heard.

I am filled with admiration for a mother who took her 12 year old seriously, and facilitated his protest even though she knew it could get ugly. Who told journalists, ‘He’s not some puppet I wheeled in there. This was him – this was all him.’ I would be proud to be such a staunch ally. To treat communicating through a device as equal to talking (or shouting). And to have raised a daughter who wants to protest too.

I’m proud of a world where disabled people are helped by technology and supported to communicate when they can’t speak.

What the whole story relies on is JJ’s ability to shout (even if his device’s voice output isn’t quite loud enough to be heard above enthusiastic Trump supporters).

Sam has been using his eye-gaze computer for some time now and is beginning to create messages or questions within his communication software, or he uses the computer to read himself stories. We try to give him as much autonomy over the computer as possible (whilst hovering around, interfering, facilitating and modelling) so he can choose what he wants to do. When he chooses to use it for communication, we take the messages he says seriously.

By ‘says’ I mean that as he selects words within the communication software, they go in to a window at the top of the screen. When Sam goes to the ‘speak’ cell the computer says all the words out loud. When he is reading himself a story he selects the ‘speak’ cell and a paragraph of, for example, Mr Stink by David Walliams, will be read aloud by the computer.

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But the loudest volume of Sam’s computer isn’t that loud. He can hear it as he is quite close, but you can’t really hear it if you are across the room, and you definitely can’t hear it if Eli or Stella are squawking. So Sam’s speech and language therapist recently gave us a speaker to sit on top of the laptop, the volume of which can be controlled within the communication software. It can be turned up really loud, because if you are going to give an AAC user the opportunity to communicate as a neurotypical child would, you need to give them the ability to SHOUT if they want to. Or whisper. Or somewhere inbetween. Sam should be able to compete in volume with his siblings even if it’s not something I particularly relish the thought of.

In the same way that I ask Eli many, many times a day to please not shout, Sam should be able to be loud and annoying. There is a temptation to think of children like Sam as ‘good’ because they are relatively quiet and controllable, but part of being a child (any child) is being disruptive and protesting and Sam should have as many opportunities to do that as he has to be compliant. If we get to the point of Sam purposefully turning up the volume of his computer and shouting at us all, and me having to tell him to turn it down, that will be a good problem to have.

Meanwhile, JJ’s recovery from the Trump rally ordeal was helped by him meeting Obama the following day who was every bit as friendly as you would expect, crouching to his level, listening to JJ’s messages and shaking his hand.

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(Holmes family photo taken from Washington Post website)

According to a Clinton official, when he was told he was about to meet Obama,  ‘JJ jumps out of his seat and erupts into cheer . . . his smile almost bursting out of his face. His body overcome by light, when just the day before it almost succumbed to hate.’

Let’s keep heading toward the light, people. Let’s confront bullies and prejudice. Let’s give all our kids the ability to communicate, to shout and to protest. Let’s take them seriously and hope that one day we might meet Obama.

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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.

 

 

 

Having a break – the guilt of ‘respite’

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For any parent of a disabled child, the subject of respite is a bit fraught. Often because accessing any is difficult, and will have involved tricky conversations/numerous phone calls with various professionals. Partly because the logistics of organising it and physically getting the child there with everything they require are onerous.

But mainly because it’s a double-edged sword. On the one hand we would really like a break. On the other hand we feel guilty for wanting a break. We are on the knife-edge of knowing that the respite place we have carefully considered is able to take care of our child, but also thinking that no-one is going to be able to take care of them properly.

Almost two years after we were first referred for respite provision, Sam has just had his first overnight stay without us. The somewhat casual timescale allowed us time to get used to the idea, due mainly to the first hospice refusing to feed Sam pureed food so us (and yes, I mean us, social services having still not managed to assess Sam) having to find a different place. We agreed to the new referral, then went for a visit, then spent a couple of hours going through aspects of Sam’s care plan, and then stayed there with him for a weekend, then the time came for him to stay there himself.

It’s a nice place. It’s run by nurses, so feels quite medical, but that means they are totally on top of medication and not at all intimidated by disability. It’s purpose-built building with lots of space, bedrooms opening on to gardens, a huge room for craft, fun and reading. Loads of books and friendly people floating around doing interesting things. There are other kids and their siblings, volunteers making bugs and Gruffalos.

To give some context, I am generally quite relaxed about being separated from my children. We are lucky enough to have lots of family in London who are willing to look after our kids. For the first three years or so of Sam’s life he spent one night a week with my mum, he’s spent loads of weekend with his other grandparents. Eli has had ‘sleepovers’ of up to five days with grandparents and my sister and her partner. Stella is somewhat testing the model by being more dedicated to breastfeeding than I would ideally like, but at some point we’ll manage to offload her too. But of course, these people are all in our family. And as Sam has got longer and heavier, and the kit he needs has got larger, it’s got trickier for him to stay anywhere that isn’t our home.

We have therefore shifted the model so James and I (perhaps with a child or two) can go away, leaving Sam in our house with various permutations of carers and family. We realise how fortunate we are to be able to do this.

What the respite hospice offers is an opportunity for us to stay at home and for Sam to stay elsewhere, allowing us to be one child down (which with three of them is a welcome release of intensity), spend more time with the other two, and perhaps get some of the stuff done that we have been planning to do for months but never have time to (e.g. unpack boxes from our house move 2.5 months ago, or actually tidy up our tip of a house). I am keen on this idea.

Except that it also involves Sam staying somewhere else without us or any other family, which makes me feel guilty and nervous.

On the morning of Sam’s solo stay we packed up everything he needed (a full car of stuff) and James and a carer set off. I used Stella as a convenient excuse to not be the one to do the drop off. I called the hospice to say they were on the way, and it transpired that there had been some administrative confusion that meant they weren’t expecting Sam until that afternoon. The idea that Sam was about to arrive for his first stay without us, and they weren’t expecting him, that they weren’t all standing around anticipating the arrival of Sam, made me feel so sad and unsure. Should I call James and get them to turn back? The journey can take up to an hour so that would mean spending most of the day faffing around which would be the exact opposite of respite. As I burst into tears, the nurse said no, they would make it work.

When James got there it was actually okay, and Sam seemed alright, and by the time James and our carer left he was happily entertained and content. We spent the weekend with Eli and Stella, and realised that looking after two kids is much easier that looking after three but still pretty relentless which was quite a helpful distraction. Eli burst into tears on three separate occasions because Sam wasn’t there.

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Then we went out for supper to celebrate our 11th wedding anniversary, and appreciated that organising babysitting for two non-disabled kids is really straightforward. We ate delicious food, drank too many drinks, faded far too early, and came home to Stella screaming in the babysitters’ face. We had called the hospice and they said Sam was okay.

The following day we woke up to a house that only had our kids in it and us. Sam sleeps badly, and we’re lucky to have nightcarers who get up with him during the night and help us in the morning. We also have day carers almost every day which makes our family life possible. But the flipside of having a lot of help is that there is almost always someone in our house. It is a luxury to wake up and potter around in a dressing gown with only Weetabix for kids to think about.

We went for lunch, where we were just about able to have actual conversations with other adults, at tables with benches that wouldn’t accommodate wheelchairs easily. I had fun. But we were with family, and I felt bad that Sam wasn’t there. Even though we probably wouldn’t have gone for the lunch at all if Sam had been, partly because of the wheelchair, partly because trying to go for lunch with all three of our kids and actually expecting to talk to anyone is an absolutely ridiculous idea. We called again and Sam was apparently happy.

When James went to collect Sam that afternoon everything was okay. He seemed relaxed. There hadn’t been any disasters. When Sam got back home and saw me, Eli and Stella he was totally thrilled. Eli was so happy to have Sam back, equilibrium had been restored. Eli was even content to not be able to watch his TV programmes because Sam doesn’t like them.

It was, by all measures, a success. Sam did fun stuff that he wouldn’t have done at home. Eli and Stella got more of our attention, James and I had a bit of a break (it’s all relative).

So why do I feel so guilty about it? It reminds me a bit of Sam’s first week at nursery, when he was almost one. I dropped him off and called James on the way out in tears, saying I would never be able to go back to work because we couldn’t possibly leave Sam at nursery… Am I just further along the continuum of internal conflict that starts at angsting about whether kids should go to nursery or have a nanny (or any childcare at all), and ends at going away for a week with no kids? Or am I just trying to justify something that’s not fair on Sam?

I don’t think there’s a right answer, but for now I’m shattered and have a to-do list that stretches over two A4 pages and Sam was happy during this last stay, so we’ll crack on (as Eli would say) and hope we’re doing the right thing.

Or at least not doing the wrong thing.

 

 

 

 

Playing for laughs (via eyegaze)

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I’ve got three kids! I don’t have much time to write blogs! And we have moved house, again, so things are as relaxed as usual round here.

In amongst the chaos and many, many boxes, Sam has been continuing to use his eyegaze computer. It travels to school with him every day and then he uses it at home for a mixture of entertainment and communication. Sam is building skills in using his eyes and navigating around software on a computer, and much of this is by playing games or other activities that he finds motivating. Like everything to do with kids learning something, anything, it’s best done through play as far as I can see.

We have various activities that he enjoys on his computer; his favourites are, unsurprisingly, stories. Some of which are ‘multiple choice’ where he has to pick the right word to continue the pre-programmed story. Others are computer equivalents of audiobooks where the entire text of a novel is on the computer and Sam can choose the story he wants, select the chapter, and then it is read out to him (in stilted computer voice, but he doesn’t seem to mind). Crucially, he has to keep selecting ‘Speak Paragraph’ in order for the story to continue, meaning that he has to engage consistently.

Sam’s current favourite book to read like this is Mr Stink by David Walliams. We have the actual book and read it to him frequently (actually I don’t, generally because I’m often preoccupied with a smaller child, but others do including my dad who assures me it is great and totes emosh). Other times Sam sits at the table reading it to himself via computer. It’s brilliant.

We hadn’t foreseen quite how fantastic the computer is for Sam and Eli to use together. The laptop is touchscreen and so they can play games like, for example, Splat the Clown where Sam can splat using his eyes and Eli using his finger. There aren’t many activities that they can do together like that, with total parity.

The current hit, however, is the most simple of all. By navigating through various screens within the PODD communication software Sam can get to a page which just has Yes, No and Don’t Know buttons.

Through trying to gauge Sam’s reliability of answering yes or no to questions (Sam doesn’t have a totally reliable yes or no, which is a work in progress for him and something about which I could – and may at some point – write an essay…), James invented a game of asking him sets of related yes/no questions, some of which are totally ridiculous. It is a good way of him practising giving us a clear yes or no when we know he knows the answer. He is definitely making progress on this. The thing we didn’t expect, and which is in danger of slightly undermining our carefully constructed strategy, is that Sam is now giving us the ‘wrong’ answer because it’s funny.

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Oh the laughs! The advent of this game has also coincided with Eli hitting the zenith of his life so far where he can successfully make every member of our family laugh. Let me assure you that watching one of your kids make the other laugh is one of life’s pure joys. Watching Eli make BOTH of the other kids laugh is very, very lovely and makes my heart sing. All the feelings.

So it isn’t just James and me asking the yes/no questions, but Eli too, and Sam bloody loves it.

In this clip I’m asking the questions, and modelling the answer. I think you get a real feeling for how much respect my children have for me.

In this (longer) clip, Eli’s asking the questions and no doubt because I’m videoing, Sam is not answering. Sods law. Then while I’m waiting for him to answer, he navigates out of that page which is autonomy in action, and is the physically disabled equivalent of a child wandering off because they have lost interest. He actually then went to a different yes/no page, through a different pathway in the software (which I didn’t know you could do), and then we continued. His ability to do this, without us mediating, is as pleasing to me as all the chuckling.

In the interests of equity between my kids, I leave you with a video of Eli making Stella laugh. I defy you not to feel cheered by a small child talking nonsense and a baby thinking this is the height of wit.