The way things look

I was struck by a conversation I had with an Occupational Therapist (OT) when Sam was very small – she is perceptive and (typical of all good therapists) sees her work in the context of the whole life of the children she treats. She was commenting on how lovely Sam was and said that would be useful to him because he would probably always need people to help him. It’s true – both that people are always more willing to go the extra mile for people who are smiley and engaging, and that Sam depends on people going out of their way for him.

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Partly as a result of conversations like that, I always try to make sure Sam looks good. I buy him nice clothes that work for him and us (jumpers we can get on/off, coats that fit in a wheelchair) and look smart after a day sat in a wheelchair. I buy things in cheerful colours that will suit his slight frame. I enjoy doing this – I do the same for his brother – but I think it’s particularly important for Sam. We have to maximise the chances of strangers seeing past a disabled child in his wheelchair and noticing the cool little kid. Of course we don’t always manage it (there are plenty of days when both our kids look like Dickensian orphans) but we try.

We are supported by my sister’s attempts to inject cool. I don’t know how many other children wear Nike Air Jordan’s over their ankle-foot orthoses.

[This could all be an elaborate excuse for me to spend more money in Scandinavian clothes shops but don’t tell James that.]

We can’t buy everything from mainstream shops but I seek out the best of the options. Sam dribbles sometimes and he wears a bib all the time so they can be changed easily without his clothes getting wet. Very early on we bought bandana bibs in bright colours which are kind of his trademark now. I hate the idea of him in baby bibs and have known to be quite stern on this front. He’s disabled, no need to infantilise him.

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If he does need specialist aids, I think they should recognise his age. A really good example of this is his hand splints.* ‘I’d really like to wear hand splints’, said no-one, ever, but the designer of these thought about them being for kids, decided against making them flesh-coloured in the hope no-one would notice them, and made them colourful. It’s probably not a coincidence that they were ordered by the OT mentioned above.

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But for some things, particularly equipment, there aren’t many options. It’s a constant source of frustration that things Sam needs are ugly and clunky.

I trained as an architect and care about how things look. I’d rather not have a sitting room filled with supportive chairs, standing frames and walkers but I have no choice. These pieces of kit are helpful and Sam uses them every day so we have to look at them. They are so specific that not many companies make them, so our choices are limited.

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Sam’s bed is the exact opposite of the hand splints. He was growing out of his cot and needed a larger bed that could be raised and angled. Everyone agreed we needed a “profile” bed. Our local social services only supply one kind of these. It’s a full-size single mattress and looks exactly like a hospital bed. The only thing that differentiates it from an adult bed is that it has cot bumpers on the side rails which are flesh-coloured. I can’t begin to understand why anyone would think that was a good idea.

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When I asked if there were any options that would be more suitable for a five year old boy, the therapist (not the one above) suggested we could put stickers on it. I have actually done this. It took an hour to stick stars on every available surface. Now Sam often has a scrunched sticker stuck to him when we get him out of bed, but the bed still looks like it should be on a ward and I resent the fact that while some boys get to sleep in beds shaped like cars, Sam gets the same bed that he recovers from anaesthetics in.

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I have loads of examples on this theme: the time that I ordered an expensive specialist hood for Sam’s supportive buggy which took months to arrive and looked like something a 15 year old made in their school workshop. Actually, not by me at 15 because I’m quite good at making things, but by someone who shouldn’t have taken Design & Technology as a GCSE option. I returned the hood and wrote a letter to the manufacturer explaining why this product was ugliest thing I had ever seen and didn’t even work. Then my husband rewrote the letter to be slightly less offensive and the company said they ‘value feedback from our customers and will act on the constructive elements of your letter’. Ha!

The poor aesthetics bother me, but so does the absence of real design expertise. It’s not good enough for a buggy to just provide the right postural support to a child; that buggy is also going to be pushed by parents and folded up hundreds of times. A buggy that repeatedly injures the adult folding it and causes grandparents to spit expletives is not a good piece of product design.

There is one unanticipated side-effect of all this frustration and lack of control. When Eli first needed proper winter shoes I considered giving him Sam’s old boots. They’re specialist, supplied by his physio, but essentially just boots. They’re in pretty good condition since Sam never walked in them!

James told me I was being ridiculous.

So now when Eli needs new shoes (which feels like every month), I take him to a shop and choose the shoes I like most. I don’t look at the price and I don’t care whether they are the prudent choice. It is a joyful luxury to choose your child’s shoes based on looks alone and I love it.

* Sam has his hands fisted most of the time and his wrists bent outwards. The splints, which he mostly wears at night, are an attempt to stretch out his wrists and fingers to avoid him losing range in the muscles.

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Cuddling

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The other day my mum sent me a link to a blog by Alain de Botton about psychoanalyst John Bowlby and his work on attachment theory. “I’m not sending it for any particular reason by the way”, she added a little nervously – presumably just in case I thought she was accusing me of raising children with attachment disorders.

I know very little about psychoanalysis and so a lot of the detail is unfamiliar to me. Essentially I understand from the article that Bowlby looked at how our experience of early maternal care shapes the way we form relationships throughout our lives, suggesting that kindness does not smother and spoil children.

“Bowlby poignantly invokes loving care that a little boy needs: ‘all the cuddling and playing, the intimacies of suckling by which a child learns the comfort of his mother’s body, the rituals of washing and dressing by which through her pride and tenderness towards his little limbs he learns the values of his own…’ Such experiences teach a basic trust.”

The typical development of children is that they are wholly dependent when babies, in a tactile, floppy, defenceless way and then as they grow they get more physically and psychologically independent. They begin to sit in a highchair rather than your lap, they crawl and then run away from you, they talk to people without needing you to interpret. Much of this trajectory is stalled or disrupted for Sam; he is still dependent, he cannot move away.

This means we retain the lovely physical proximity of a child on your lap, of a small head nestled in your neck. We now know his body almost as well as he does and he knows exactly what we feel like.

In the 1950s Bowlby researched the trauma experienced by children who were separated from their parents during hospital stays, when visiting times were restricted and mothers not allowed to hold their sick children.

 “It took a long time for Bowlby’s ideas about the importance of the early bond between the mother and child to get broader recognition and support. But it did happen, eventually. There was no single dramatic revolutionary moment. Many thousands of people changed their minds in small ways: an idea that sounded stupid, came to seem mildly interesting… so that today a child facing a frightening operation is surrounded by love and kindness and her parents get to sleep in a bed beside her.”

I wasn’t able to hold Sam until he was four days old when he was still surrounded by wires and tubes. On day six we visited the hospital and were holding him for most of the day. A nurse said we should be careful we didn’t spoil him – if he got too used to cuddles he would want them all the time. I think that was an incredibly mean-spirited thing to have said to people in our position. I couldn’t imagine anything better than being able to cuddle my son all the time, and hated that we left him there overnight while we returned home. The saving grace was that we didn’t really know him yet and he was so ill that he needed nurses more than he needed parents.

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Recently we have spent two days in a different hospital while Sam has had general anaesthetics for tests. He knows exactly what’s going on and puts up with the whole thing with extraordinary patience. No-one loves being in hospital – that unique combination of lack of control, limited daylight and sitting around makes me feel more exhausted than after a run. But the bit of the day that is almost unbearable is the period of time when I know Sam is sedated and that he will wake up soon, but I can’t be certain they will come and get me immediately. So there may be a moment when he opens his eyes and he’s in an unfamiliar room, confused by the fading anaesthetic, surrounded by strangers. I don’t know if it’s a legacy of the early hospital stay or the fierce protectiveness of motherhood, but it makes me feel incredibly sad. Imagine if we weren’t there at all, if we weren’t allowed to be there.

Bowlby’s work suggests that children need parents to be consistent and loving, to meet their needs and make them feel safe. That, he argues, is how children develop into adults who can form healthy relationships.

Sam’s disability means he is dependent on many adults; he has more physical contact than an average four year old would have with people who aren’t his parents. More intimate tasks undertaken by people he hasn’t necessarily chosen. James and I can’t do all of the ‘mothering’ that Bowlby describes so we have to broaden the circle and hope that we can still produce a child who is secure in his attachment, who feels safe and has healthy relationships.

Sam needs a village, not just two parents, to tend to his washing and dressing, the feeding and cuddling. He and we are used to him being looked after by other people, some paid some not. We hope that by making sure these people are kind and competent he feels secure. He can tell whether he can trust people – whether they are holding him safely and will meet his needs.

We are looking into having someone stay at our house overnight to get up with Sam when he wakes. Almost five years of getting up most nights is a lot of missed sleep and I like the idea of someone else doing it. It is the next stage in a life that will only involve more paid carers, not fewer.

But of course, the reality is that someone else will be going in to Sam, into his bedroom at 3 in the morning, when he expects it to be me. We can interview suitable candidates and check their CVs but really you want someone who will cuddle correctly in the middle of the night and that’s tricky to test. We have to have high standards – there is nothing more important than a four year old boy feeling safe in his own bed. It is our responsibility, and it’s making us anxious.

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Top photo: Sam with my sister Maddy when he was 3 months old

 

 

 

Living in Camberwell

I wrote this article for a local publication and so it is pretty specific to our particular corner of south London: it first appeared in the Autumn 2014 edition of Camberwell Quarterly, the magazine of the Camberwell Society.

Living in Camberwell with a disabled child

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My son Sam will soon be five years old and has lived in Camberwell and Peckham his whole life. Sam is bright, loves books and is developing freckles in the summer sun. He also has cerebral palsy which severely affects his ability to sit, stand, eat, drink and walk.

Following his birth in Camberwell during a winter of snow, Sam lived in three different houses in SE5 and then, last year, the big move to SE15 – so we have spent his life pushing him around Camberwell and learning how to navigate this bit of London with a disabled child.

We have been lucky to live so close to Sunshine House, on Camberwell Church Street. This beautiful building is exactly what a child like Sam needs: inspiring architecture, totally accessible for a buggy or wheelchair, stuffed full of dedicated therapists and useful doctors. I spent many hours enjoying the walk down Camberwell Grove and through the churchyard, then regretting the weight of a laden buggy as I huffed all the way back up to the top of the hill.

We were also fortunate in Sam’s first year to stumble across Camberwell Grove Early Years Centre. Parents of disabled children frequently struggle to find adequate childcare for their complicated kids, but the manager of this nursery welcomed Sam with enthusiasm and I was able to return to work. Sam has been going there for almost four years now and his younger brother will start shortly. Collecting Sam when he is playing in the lovely, huge garden with children he’s known for years is something to treasure.

In terms of activities for Sam, Camberwell is poorly served. Now Sam is four and uses a wheelchair, I cannot think of any local playgrounds that have any equipment that Sam can enjoy. He loves books, but he can’t get down the stairs to the children’s section of Camberwell Library. So we often travel to the Horniman Museum which puts on wonderful story telling sessions on Sundays. Sam is usually the child laughing loudest and longest at an elaborate tale of how the lion got his roar.

Transport is a mixed bag. The new ramp and lifts at Denmark Hill station are a great development, and it is entirely our fault that we moved one month after they were completed. Our nearest station is now Peckham Rye which has a labyrinth of stairways which make it pretty much inaccessible for a wheelchair user.

As a result, it’s usually most convenient for us to drive. Unfortunately Southwark has a hardline policy on blue badge holders, meaning that – unlike in Lambeth – we can’t park in resident permit bays. Given that Camberwell is increasingly dominated by controlled parking zones, this often means we circle the area looking for an elusive disabled bay.

We work hard to include Sam in as many aspects of local life as he can be, but it’s complicated. It’s easy for disabled children and their families to become isolated because they struggle to be included in ‘normal’ activities. There is a real need for us all to fight for more inclusion for disabled people.

In the meantime, the world gets better by small acts of kindness and friendship. We appreciate and enjoy Sam having a place in the communities of Camberwell and Peckham, where mothers talk to him in the playground and shopkeepers return his smile.