The privilege of touch

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

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

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

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

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

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

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

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

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

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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.

Cuddling and carrying

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Recently I have found myself talking about good things that have resulted from Sam’s birth and life. It’s now less eight weeks until the birth of a new baby so a good time to focus on the positive.

One of these conversations was about carrying Sam. Sam is almost 18kg which is very light for an almost-six year old but quite heavy for someone who can’t support any of their own bodyweight. He has various pieces of equipment to sit or stand in but every day there are dozens of transfers to be done: from bed to changing table, downstairs to specialist chair, out of chair to changing table, back in to chair, in to wheelchair, out of wheelchair, changing table, upstairs, in and out of standing frame, in and out of bath, etc etc. This is just the basics – if we spend the day doing things away from home there will probably be more lifting – so Sam can sit on top of the sculpture in the park like Eli, or to be lifted so he can see animals over the fence, or in order to sneak up on people in the woods.

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We are just on the cusp of getting a hoist to help us with some of these transfers. A hoist is a machine which attaches to a sling underneath Sam and lifts him up. We have known this is coming for a while and I find myself surprisingly philosophical. I strongly suspect Sam won’t mind – he loves swings and hammocks (and zipwires) so I don’t think he will mind repeated suspensions throughout the day. I know there is only so long we can ask others to lift him and we have a responsibility to provide an option that doesn’t endanger back muscles.

It’s the mediation of my relationship with my son through equipment that I resent. At the moment I often lift Sam like (for want of a better description) a baby, with one arm cradled under his neck and the other under his legs. He always looks up when I do this and I can look down at his beautiful little face, and he often has an expression of pure joy and comfort. Should anyone else infantilise Sam I will hate them forever (or close), but I am allowed. I have been carrying him this way for almost six years. One of the joys of early motherhood is the physicality of it – small boys who know your body better than you do and want their skin on yours. It is sad that these moments will be slowly replaced by the attachment of a sling to a hook, the pressing of some buttons and the whirr of a machine. I must find a way to keep the physical connection, for us to both remember the joy of him being on my lap.

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James does most of the outdoor carrying – he is the one helping him climb trees – but I do my fair share of the lifting, including carrying Sam up and down stairs at home. Earlier this year, before I was pregnant, we realised that if I was going to continue doing this I needed to be strong so in addition to running a bit I started seeing a personal trainer who focused on weights and strength. No-one should get the wrong idea about this – my default position is inactivity and I didn’t voluntarily run outside until I was 32. I am no gym bunny. My relationship with the trainer involves him encouraging and/or forcing me to stop being so pathetic while I deny eating a loaf of sourdough bread every week. I do not look like someone who spends a lot of time exercising (because I don’t).

But what began as a way to continue lifting Sam has been a revelation. Partly because it’s time spent doing something completely different to wiping small children, but mainly because I didn’t realise how empowering it would be to feel strong.

Then I got pregnant and as my bump has grown I have carried on lifting Sam and training at the gym. Nothing feels more satisfying than lifting (admittedly small) weights, surrounded by grunting men in vests, in the male-dominated section of the gym. Or continuing to be able to do all of the things I would normally do with Sam while 31 weeks pregnant. Sam is very accommodating of being literally pushed aside by a growing bump. I get a bit out of breath as we get to the top of the stairs when I’m carrying him, but I can do it and I will carry on for as long as I am able. There will inevitably be a month or so post-birth when I can’t lift him and even holding him might be tricky, so I’m making the most of it while I can. I am extremely appreciative of having this body, which is making its third baby and still able to carry its first.

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I have been going through a phase of obsession with the author Kate Atkinson and came to re-read a book of hers recently. I had forgotten how utterly unsuited the storyline is to me right now; I had to abandon it after a scene about a mother being murdered in front of her children precipitated some particularly heartfelt weeping. But just before that I read this passage:

‘ Their mother was wearing Joanna’s favourite dress, blue with a pattern of red strawberries. Their mother said it was old and next summer she would cut it up and make something for Joanna out of it if she liked. Joanna could see the muscles on her mother’s tanned legs moving as she pushed the buggy up the hill. She was strong. Their father said she was ‘fierce’. Joanna liked that word. Jessica was fierce too.’

Kate Atkinson, When Will There Be Good News?

I want to be strong. And when it comes to caring for my kids, I want to be fierce.

Listening to the lungs

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When you are a parent, there are times when you really can’t be sure you’re doing it right. Much like when you thought all grown-ups knew what they were doing and then got to your twenties and realised the world is full of clueless adults, it turns out a lot of parents are winging it with varying levels of success.

Sometimes I have days like this Saturday, when my three year old found out that the ramps installed to enable his disabled brother to get out to the garden also mean he can drive his outdoor toy car straight up and into the kitchen. Then he repeatedly barged my legs, and on the back of a major toileting incident and various other small but irksome exchanges, I found myself pushing the car (with him in it) back out to the garden, with a noticeable lack of good humour. I then ignored him for a few minutes, so when my husband returned from the shops he was a little alarmed to find Eli was standing at the back door screaming, wearing nothing but a pair of pants. At this point I wondered if I had any idea what I was doing.

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I have many moments along this theme – wondering or worrying whether Sam’s doing enough or too much therapy, whether the boys watch too much TV, feeling bad that we haven’t taken them swimming for weeks, or that we’ve made them move house for the second time in two years, and they’ll have to move at least twice more in the next two years, etc, etc.

But then some days I think to myself… Jess, you have this job totally nailed!

Sam had a heavy cold last week, caught from me. He was snotty and a bit feverish but not awfully ill. He started to have a bit of a cough, and on Wednesday night I wasn’t very happy with it. But his temperature wasn’t that high, and he wasn’t that miserable. We put him to bed as usual, and about 10 minutes later he was sick. Which wasn’t ideal, and is relatively rare these days, but it’s not extraordinary. Then he slept well that night, which was very unusual, and by this point my metaphorical ears were pricked.

Sam hasn’t had a chest infection for over two years, but previously he’s had a lot. And I remember the sound of them.

First thing on Thursday morning he still had a bit of a cough, so I phoned the GP. We can normally get an appointment on the same day but they were short of doctors so the best they could offer was going to the surgery and waiting an unspecified length of time to see someone. Nothing sounds less fun than taking a slightly ill boy with a low boredom threshold to sit in a room full of sick people for hours so I dithered a bit. But then Sam coughed and I decided we’d go.

As we arrived, I could hear the administrative staff behind the desk talking about how few doctors there were, and that there were too many people waiting without appointments. Then the doctor came and queried whether all of these waiting people really needed to be seen today.

I was feeling a bit sheepish – on the face of it, yes Sam is disabled and complicated, but his symptoms weren’t that stark: a cough that his mother thinks sounds wrong, a little bit of a fever, some snot, and a really good night’s sleep.

We waited less than an hour before being called in to the doctor’s room. I set out my concerns, and she took his temperature (a bit high) and listened to his chest: crackles on the right! Needs a course of antibiotics!

I mean obviously I’d prefer he wasn’t ill. But the feeling of satisfaction at being proved right was a parenting high point. I know this boy. I know his lungs. And some days I am ALL OVER this mothering (*smug face).

(Eli might not agree.)

Feeding Sam food

Sam can’t eat or drink. He tried really hard to learn and we all spent a lot of time on it for 18 months but by age two he really wasn’t enjoying it. He got annoyed at the sight of a spoon and the amount he was eating was tailing off.

Drinking had been a problem right from the beginning. His dysphagia (difficulty swallowing) meant he found sucking from a bottle really difficult – if the automatic reflex to co-ordinate sucking, swallowing and breathing is messed up, it is incredibly hard to learn. The human anatomy at the back of the throat is an awful design and Sam just couldn’t get the hang of it. We spent hours trying to feed him by bottle, and later by cup but it was never enough and he was discharged from hospital with a nasogastric tube which we put milk through (the tube went up through his nose and then down in to his tummy).

At just over four months we started weaning in the hope that eating thicker textures would be easier than drinking and be more likely to stay down in his tummy. This was also hard work for Sam and he did incredibly well given the difficulties but he never got close to eating enough food to grow. Meanwhile he had constant and painful gastro-oesophageal reflux.

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So at six months old Sam had a PEG inserted in to his tummy, allowing us to give milk through a tube straight in to his stomach. When he was two this was changed to a button.

If you start out from the position that you have a small child and they have to have a tube inserted in to their tummy, which means even when you have given them a bath and they are lying on a towel all perfect and clean they will still have a tube dangling from their abdomen, this might be upsetting. Which it was in some ways. But if you start from the position that your child is unable to feed and you have spent six months putting milk through a tube in their nose which everyone can see, and keeps falling off/out, and their cheek under the sticky plaster is red raw, and when the tube needs replacing you have to get someone (sometimes your poor neighbour) to bind your screaming child in a towel and hold them down while you push a tube up their nose and down their throat, and every time you feed them you have to do a pH test to check the tube is still in their tummy and you aren’t about to pour milk in to their lungs… if you find yourself in that position, then a permanent tube in their tummy seems like a great idea.

James and I have fond memories of a holiday in Scotland when Sam was 18 months old when he could eat half a yoghurt pot for lunch. That was the highpoint of his eating and once we returned to London the combination of physical difficulty and chronic reflux meant he was less and less keen to eat food. To be honest, we were all weary. There are only so many hours you can spend mixing various mashed and pureed foods with baby rice and spooning them into an unwilling child before you feel there are better ways to spend time. Eventually we got to the point of not offering Sam oral food at all.

That gastrostomy tube is a lifeline – it is the reason that Sam is thriving and growing. It represents a choice to spend time reading books and enjoying ourselves rather than trying for hours to eat enough food and drink enough fluid and the inevitable chest infections that would result.

So for the first three years of his life, Sam was largely fed milk – various hypoallergenic, cows-milk-free and enhanced formulas that began to arrive in big boxes every month. As far as dieticians and general medical opinion is concerned, once a child has a tube they are then fed special milk. So on the one hand you have a typical four year old who eats some cereal, a banana, some chicken and maybe a cake. On the other hand you have a tube-fed four year old who is supposed to have 240ml Nutrini Energy milk for breakfast, 240ml Nutrini Energy milk for lunch and 240ml Nutrini Energy milk for supper.

A few years ago I came across ‘blended diet‘ (BD) which essentially means pureeing food with enough liquid to be able to push it through the gastrostomy tube. I am a natural law-abider (the kind of person who feels uncomfortable going in to a pub to use the loo if I haven’t bought a drink, who scrupulously observes any and every queue) and so having found an academic journal article that suggested children had experienced less reflux and eaten more while being fed puree rather than milk, I approached each of our doctors and asked their view before I started. They were generally a bit bemused but didn’t tell me not to. We started putting Ella’s Kitchen baby food pouches through Sam’s gastrostomy tube.

It’s not a complicated idea – we followed principles similar to when you are weaning a baby. We gradually made more complicated purees and replaced quantities of milk for boluses of puree. Our dietician made clear that she could not advocate this type of feeding (she is prevented from doing so by her professional organisation) but was happy to discuss principles with me. She analysed our recipes to see how much protein, carbs etc Sam was getting and suggested supplements.

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Sam is now fed entirely puree. Instead of being pumped full of high calorie milk with a 12-month shelf life he is fed a bespoke recipe of roast chicken, homemade chicken stock, tahini and avocado whizzed up in a high-speed, super-powered (obscenely expensive) blender. Since we have been doing this he vomits less, has fewer reflux symptoms and has been putting on weight (albeit slowly, but that’s always been the case). We add calorie and vitamin supplements to the blends. Doctors comment on how well he looks and how sensible an idea this is.

Through this process, I have rediscovered some of the mothering instinct that should be part of feeding your child. There is no pleasure in hooking up milk to a pump, but there is real and tangible satisfaction to be gained in roasting a chicken, making stock and feeding it to your child. There is enormous joy to be found in buying blueberries in the morning and giving them to your child in the afternoon; to seeing your child grow as a result of the food you have made with your hands even if it doesn’t arrive in their tummy via their mouth.

Health professionals (mainly dieticians and nurses) are concerned about this method of feeding – they are apparently worried the tube will get blocked (this has never happened to us), that there are problems with food hygiene (which the rest of the population manages when feeding their kids). They are uncomfortable that you can’t be sure how many calories are in blended foods. These concerns are such that our nearest respite centre refuses to give children puree via gastrostomy, and therefore Sam can’t stay there without us being there to feed him (which with the best will in the world, is not exactly respite).

It seems to me that a model of care where children automatically have long-life milk for every meal is better suited to those analysing calorie requirements and setting up pumps than it is to the recipient. I resent the idea that most parents feed their children what they want, with some public health encouragement to maximise vegetables, but us feeding Sam kale and quinoa rather than milk full of maltodextrin is somehow rogue. The world is upside-down when goody-two-shoes-Jess is seen as a rebel.

We all make parenting decisions for our kids. Our choice is to feed our son actual food.

Holiday?

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The summer holidays have really derailed my commitment to writing blogs. Despite Sam still going to nursery for two days a week though the school holidays a combination of my husband being away in June, our nanny being away for most of July, me trying to do some work, then us going on holiday for two weeks meant I was struggling to keep on top of basic tasks. And my house was a tip.

I had good intentions of writing when we were on holiday – wouldn’t it be the perfect opportunity, with all that spare time? But Sam developed a fever on Day 1 of our stay in Devon and spent a considerable amount of time vomiting (in a carpeted holiday home, hard to tell sometimes whether I was more stressed about Sam or the soft furnishings). Then his gastrostomy site got infected so he was really sore. Then we went on to Cornwall where we stayed with good friends and loads of kids so I was too busy sipping Aperol Spritz in the hot tub to be writing.

Talking of which, if Sam could talk I’m certain he would tell us the hot tub was the highlight of his holiday. He is at his calmest, stillest, most relaxed in the very hot water. I spent 45 minutes in there with him one morning. He would happily have stayed longer but I was concerned about whether he was actually being cooked and whether his fingertips would ever rehydrate.

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I had purposefully reduced the amount of Sam-admin I did on holiday – which meant I spent only one morning making calls and answering emails. On our return to London, I caught up with everything and we had embarked upon all the appointments we had postponed while we were away…

We returned to London on Friday and then (these are only the Sam-based bits):

Saturday – 1hr physio at home

Sunday – 1hr physio at home

Monday – 1hr physio at home and checking fit of a new chair. Cooked, blended and froze a week’s worth of food for Sam (approx 1.5 hrs). Confirmed Sam can attend a hospital appointment for some tests. Rearranged Sam’s specialist dentist appointment so he can go to a picnic with friends from nursery later in the week. Ordered repeat prescriptions from pharmacy.

Tuesday – Opthalmology appointment at hospital. Waited in for collection of Wheelchair Accessible Vehicle we had borrowed for holiday. 1hr physio at home. Tracked down spare part for Sam’s chair which had been delivered to the wrong house.

Wednesday – new chair for Sam delivered. Met with Assistive Technology team to start loan of eyegaze computer which wouldn’t work. Met with council transport co-ordinator to complete application for Sam to get the bus to school. Packed bags and made food so Sam could stay with my parents overnight. Dropped Sam off, then deliver medications that I forgot to pack originally. Called company to arrange fitting of spare part to Sam’s chair.

Thursday – picnic at Sam’s nursery to say goodbye to other kids/parents on his penultimate day. Spoke to community nurses about Sam’s sore gastrostomy site. Rearranged some hospital tests. Caught up with Sam’s speech and language therapist and arranged to meet next week. Met with Assistive Technology team to get eyegaze computer.

Friday – Sam’s last day at nursery. Traded voicemails with Community Dietician. Collected medicines from pharmacy.

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We are constantly trying to think about the balance between Sam being a small boy and being a disabled child. Other 4 year olds get to spend summer holidays playing in parks, going swimming, making cakes. Sam rarely has a day without an appointment. In this instance, he had just had two weeks of illness/recuperation/relaxation, and most of these appointments were important to ensure his ongoing comfort, development and nutrition, so I think it was okay. But it’s not fair. As his parents we have to keep reviewing whether the things we make Sam do are right, and that he isn’t missing out on too much of the fun stuff.

I often talk with friends/acquaintances about why I am not working as an architect, why I’m not employed on a permanent basis; weeks like this are why I’m based at home for now.

(P.S. In that last photo of Sam doing physio exercises, he’s watching a video on the iPad to encourage him to keep his head up. His favourite thing at the moment is an old BBC Jackanory film of Rik Mayall reading Charlie and the Chocolate Factory by Roald Dahl. He has watched it tens of times and thinks it is HILARIOUS.)

Care/Trust

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I met a woman recently who has two small children, one of whom has cerebral palsy. She would like to return to her skilled job but can’t find suitable childcare for her disabled child. A therapist recently asked her whether she thought it was right for her to go to work, didn’t she think she should stay at home with her disabled child who really needed her? I suspect no-one ever said such things to me because they somehow knew I might do something regrettable to them. Only someone who has no experience of looking after a disabled child would think it was a good idea for their mother to have no respite.

I went back to work when Sam was 10 months old. It was a bit more complicated than that sounds because ‘back’ meant to an employer who had last employed me three years previously and the job I had gone on maternity leave from was in Qatar.  But ‘back’ I went, for two days a week.

We obviously needed some childcare. I had no real understanding of how it works in London and so had half-heartedly put Sam’s name down for the two nurseries I walked past each day – one a small private nursery who were perfectly friendly but didn’t seem optimistic about us making it to the top of their waiting list any time soon, and an Early Years Centre run by our local council.

I visited a potential childminder and sat in her sitting room as an evangelical Christian TV channel was put on mute. I explained Sam’s needs (being fed through his gastrostomy tube, medications, needing to be entertained, held, helped to sleep). She was happy with all this but she was recently qualified and had no particular experience of a child like Sam. Then she talked about how she would have up to four children with her. I left and phoned my husband, James, to tell him there was no way that woman could look after Sam; that she had no understanding of how relentless a job it would be.

We decided that if Sam was going to be in any kind of childcare it should be a nursery, where staff could take turns if he was miserable for hours and there would be more going on around him. So I called the Early Years Centre to check our progress on the inevitable waiting list and, in a moment of extraordinary luck, the manager answered. She listened to me describe Sam and called back that week to offer us a place for two days a week, starting in a few months.

Leaving Sam at the nursery was very hard. The first time I took him, I called James to weep – convinced that I couldn’t possibly leave Sam, that he wouldn’t be okay, that I could never return to work. It takes an incredible amount of trust to leave any child in someone else’s care – particularly a child who staff have very little experience of, when they have only just been taught how to feed him, when he occasionally chokes and turns blue with no warning.  A child whose care involves liaising with physiotherapists, occupational therapists, speech and language therapists, community nurses, dieticians and who will vomit on you at least once a week.

At the same time it was very easy. All I had to do was go to work, stay there all day and pick him up. It meant leaving the house at 6.30am in the dark and crossing London but it was so incredibly liberating. I could walk up any flights of stairs I liked with no buggy, I read books for the first time in almost a year. I felt a bit duplicitous that people might think I was an average 30 year old woman and not realise I was Sam’s mother. At work, people talked to me about all sorts of things that weren’t related to babies or cerebral palsy or mothering. I could pee whenever I liked, and think about what sandwich I might have for lunch. It was restorative and important to remember I was competent.

James was very supportive but inevitably late for work having dropped Sam and a mountain of bags off at nursery. They had generally been up most of the night anyway – Sam’s sleeping was appalling and we had a deal where James got up with him before I worked. And he had a big job at the time so was normally coming home from work at about 7pm to help me get Sam to sleep, having supper, then working on his laptop until after midnight. It was brutal.

Going to work was absolutely the right thing to do, and only possible because I had a very supportive employer.

One of the challenges for a parent of a disabled child is that your child is highly dependent on you, but you need for your own sake and theirs to find a way to have a break. By the nature of Sam’s difficulty in independently eating/drinking/moving/playing, he needs adults around all of the time and they need to be people he and we trust. We feel we should have him with us all the time. But because his needs are so high, because he can’t entertain or occupy himself, because he can’t sleep through the night, we need to have a break and must learn to let others take care of him.

Sam’s keyworker at nursery was a Sierra Leonean woman (let’s call her A) with only one setting when she talked and that was LOUD. Sam had (still has) a startle reflex so he jumped at loud noises and often found this upsetting. He was totally confused by A but over time he accommodated the noise and the enthusiastic physical affection. A, meanwhile, became one of Sam’s fiercest defenders. She was just the first of a number of keyworkers that took it upon themselves to care for Sam, teach him to look and laugh, buy his favourite books out of their own money. Heaven help anyone who didn’t appreciate him (leading to a succession of agency 1:1 assistants who were deemed unsatisfactory and dismissed).

The nursery story isn’t all sweetness and light and I’m sure I’ll come on to the trickier moments (when I actually withdrew Sam for a bit), but at its heart Sam’s nursery is a place that is totally okay with the idea of difference. It has middle class kids living in the surrounding Georgian houses and working-class kids from the estate down the road, social service referrals and children who are there five days a week while their parents work in media, kids from all countries and permutations of families. It’s often a shambles, but as a lesson to kids that everyone should be included it’s doing pretty well and we were all very lucky to find it.

(Photos are of Sam at 10-12 months old, when he started at nursery)

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Hearts and minds

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There are unique challenges to parenting a disabled child. One of them is that your role as a parent is blurred with so many others: physiotherapist, occupational therapist, speech and language therapist, nurse, teacher, advocate interpreter; so many things to consider and activities that the simple mothering can get buried under the tasks you feel should be doing but would actually be done better by someone who had actually trained as a physiotherapist/teacher.

The other complication is that there are so many people involved, all in slightly different ways, so our lives are full of us explaining Sam to different professionals with slightly different emphases. This is true through from the apparently simple (what should we be feeding Sam?) through to the specialist (what drugs should he be on?), and with varying degrees of medicalisation. It’s one of the reasons why we would rather wait longer to see our usual Consultant rather than a new doctor.

Sam was in hospital for the first five weeks of his life. To begin with we could do almost nothing for him except sit close and stroke his hand – his care was in the hands of incredibly specialist nurses and doctors. As he got better and bigger the intensity of medical intervention decreased and we did more for him. I recall someone describing this period when their own child was in NICU, saying they realised that their parenting and nurturing would start when they were the best person to meet their child’s needs, but in the meantime their child needed medical professionals more than they needed a mother. It could have been Martha Wainwright, who I shared a breast-pumping room with at University College London Hospital. There’s nothing like pumping milk to force intimacy with strangers.

Once that initial, horrific, period was over Sam still required medical input but what he really, really needed was loving parents and James and I have tried our best to do that well but it’s not always easy.

Sam is seen by 19 different professionals or clinics (e.g. therapists, various hospital consultants, community doctor, nurses, dietician, social worker). Some of them we see annually or every six months (hospital clinics), some he sees weekly (therapists), so over the course of 2013 he had over 150 separate appointments. Many were at home or nursery, but I was there for the vast majority of them. I try hard to cull any appointments that we don’t need, and many of them are with lovely people who we enjoy seeing, but still that’s a lot of time each week which isn’t spent just hanging out with Sam, doing things he enjoys, being a mother.

We live a life where people say things you would prefer not to hear (‘we don’t have the luxury of being able to take children as disabled as Sam’) and many things involve protracted, energy sapping bureaucratic ordeals (getting a Statement of Special Educational Need), all of which I handle better if I’ve had some sleep, and unfortunately this is one of the things Sam finds difficult. So on any given day it’s likely that I’ve been up during the night and that has inevitable effects on the quality of my parenting and my ability to cope. Unfortunately the likelihood of me bursting in to tears increased exponentially when I was pregnant with Sam and is now directly proportional to how tired I am. So there’s a fair amount of weeping some weeks, along with a lack of tolerance for people not helping us when they could. It also might lead to me sitting on a chair crying with Sam in my arms, and a Consultant sitting on the floor in front of me, wiping my tears.

Some of the appointments involve reviewing every aspect of Sam’s life, so our choices as parents are laid bare and discussed. This is often helpful, and with people who we trust and value their opinion, but not always. And we sometimes have to stand up for what we think is right despite their views. Which means Sam doesn’t need to have a blood test now (which he hates) just to check something which no-one’s that worried about.

One of the implications of this scrutiny, and of the complexity of Sam’s condition, is that aspects which aren’t particularly medical become medicalised in all of our minds. We were worried about Sam’s weight last year and had numerous conversations with people because his feeding is difficult, but it eventually became clear that we just weren’t feeding him enough. And that was because we were thinking of his feeding routine like a medicine chart, rather than what a 4 year old boy might eat. When we started putting Petit Filous down his gastrostomy tube, he got fatter. It’s not rocket science, but it is difficult to see the wood when you’re surrounded by trees and feeding tubes.

Christine Burke, who led a training session I attended earlier this year, said that the key thing for professionals involved in the lives of disabled people is that they come to work with their head and their heart. The best people we see (and there are many) are very skilled at what they do, but they also understand something of what our lives are actually like, and respect our views as parents. They explain options to us and leave us to make choices. They don’t call other professionals about Sam without talking to us first – both because that might be seen as rude, and because if they actually asked me I would be able to answer their question immediately. There also happens to be a direct correlation between how good people are at their jobs and how much they ask about Eli – because they appreciate that Sam is part of a family, and we are parents to two children.

The worst thing anyone can do is come to work with only their head and see some aspect of their interaction with us as merely a task in their day. I am Sam’s mother and I will fight for what is right for him, and I may be exhausted (I may start sobbing) but you had better appreciate how special he is.