Brothers and sisters

All kids look up to those older than them, and Eli is no different. Sam is almost 6, Eli is 3 and Eli wants to do all of the things Sam does: go to school, go swimming, watch Dennis the Menace.

Eli knows Sam is disabled and because chronology is tricky when you are 3, Eli wonders whether he will become disabled when he is older. He doesn’t see this as a particularly negative potential development. He wants to know whether he’ll get a wheelchair like Sam’s, or go to the same school when he’s disabled.

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There is something bittersweet about our able-bodied son climbing in to Sam’s wheelchair when Sam isn’t using it, about demanding to sit in Sam’s specialist supportive chair to have his snack. I hope it continues like this – Eli’s relaxed attitude to disability is how we would all be if we came across more disabled people at school and work.

Over the summer we went to the Liberty Festival at the Olympic Park . It was on one of those British summer days when the rain was relentless and so I can’t say we stayed that long, but they had curated a selection of cultural and sporting events which deserved sunshine and crowds.

One of the activities was a racing track, and a basketball court, with loads of sports wheelchairs for people to use. What an incredibly simple idea, but have you come across it before? Giving people the opportunity to just sit in a wheelchair? There were loads of kids trying to play wheelchair basketball and race along the track. Eli was super keen even though the chairs were way too big for him, and off he and Sam went to race (with James pushing Sam). He still talks about it – remembering the time that he got to go in a cool wheelchair and raced against his brother.

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I am mindful of this whole business of how you raise siblings of your disabled child. I am pregnant and we expect (fingers crossed, which didn’t go that well with Sam’s birth) another, female, mini-Jess in December. We have thought carefully about this. There are disadvantages to Sam of his parents being spread between other kids, just in terms of time and attention if nothing else – there is less time to model a PODD communication book if another child needs a wee or is in the midst of a meltdown. And there are ever present risks of a sibling feeling like Sam gets the lions share of our attention, of everyone’s attention. Sam’s needs dictate our holidays, mean there are constantly carers in our house, that our lives are disrupted by hospital stays.

Eli is also seeing various things I wish he wouldn’t. He recently asked me to teach him how to click with his fingers. When I asked where he’d seen clicking, he recounted in painfully accurate detail an incident a few weeks ago when a lady (who was in a position of responsibility and should have known better) was clicking in Sam’s face as an apparent attempt to distract or entertain him. When James asked her not to, and suggested she speak to Sam rather than click her fingers directly in front of his nose, she got very defensive and we all ended up having an argument. Eli was with us and was confused by it all, ‘You and Daddy were very cross, and the lady was shouting, and Sam is in our family’. He thinks people shouldn’t click in Sam’s face, but he likes the general idea of clicking.

We hope all of these potential stresses and strains are convincingly outweighed by the massive advantages of there being more people in our gang. Eli loves his brother. He wishes Sam didn’t go to school so that he was at home with us every day. He makes us buy Sam toys so he isn’t left out .

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Meanwhile a chatty 3 year old is a marvellous lubricant in social situations and forces all of us, not least Sam, to engage when it would be easier not to. We do all sorts of things as a family that we wouldn’t do if it were just me, James and Sam. And we all laugh more. We now have to charge the stimulator in Sam’s tummy daily so Eli has been comparing Sam to an iPad. Sam thinks this is funny as do we all. (Yes, we overuse screens in our house and Eli spends too much time with an iPad – another consequence of being Sam’s brother).

So let’s hope we can produce another one like Eli. I mean, of course we won’t. Kids have a habit of being their own people as the two we’ve got have shown. But if the next one is even a bit as accepting then it will be okay.

 

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New School

We are coming out of the post-surgery haze. Having come out of hospital one week after the operation, Sam started at a new school exactly two weeks after surgery. We had feared that he wouldn’t be well enough and might miss the beginning of term, so it felt like a huge win to get him there in one (slightly bruised, stitched together) piece.

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James has taken a significant chunk of time off work so we have had the luxury of introducing Sam to school slowly, calmly, with both of us around to make it work. We have been able to take him in together, learning how to drive into central London without killing a cyclist or getting embedded in a stationary traffic jam, and pick him up early. Eli has come in with us and got to know the new school. We have all been able to meet the staff and see where Sam spends his day. It’s all been significantly less stressful than I anticipated.

It’s not all been plain sailing. Until earlier this week Sam had periods of profound unhappiness which couldn’t be resolved with paracetamol, or ibuprofen, or TV, or books, or lying in bed. There are few things more sapping than spending four hours with a child who is really unhappy and being apparently incapable of making things better. Maybe he had a headache (there is, after all, stuff in there that wasn’t there before), or a tummy ache (ditto), or the wounds are uncomfortable, or he’s just really bored of being with us at home. Not fun. But if someone told me pre-surgery that Sam would start at school two weeks later and be largely cheerful (or at least not miserable), I would have taken it.

He’s now done two weeks and he isn’t just putting up with school, he is really happy. As we walked in on the first day, Sam was all smiles. He has loved school thus far and he knew he would enjoy it, and he was right. That is partly because he likes learning and the variety of a school day, and partly because it’s an excellent school. James and I were far more nervous than Sam, but the staff are so obviously capable, receptive and skilled that we have had no choice but to happily leave Sam there and go for lunch in Clerkenwell or take Eli to the Museum of London, again.

I’ve described before the importance, and marvelousness, of one’s disabled child going to a really good school. We have been fortunate enough to find two. Sam has moved schools because we, and the professionals working with him, felt he would benefit from more specific and specialist input so he has moved from a school for children with a range of special educational needs to a school for physically disabled children. He, and we, loved his previous school and were sad to leave. We all made very good friends there and Sam was lucky to be taught and supported by lovely, skilled people for two years. Saying goodbye to them all involved a lot of weeping, for once not just by me.

As part of leaving, Sam got his last school report. We spend a lot of time reading expert reports about Sam that are, necessarily, factual and focus on problems. Sam’s report was the exact opposite of this – hundreds of words of enthusiasm and celebration. It was a joy to read and was written evidence of the can-do attitude of his lovely teacher. Forgive me as I quote some of my favourite bits – comments that could only be made by people who have taken time to really get to know Sam and see past the immediate obstacles to communication and learning:

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‘Sam is an extremely popular member of class and throughout the school community. Children and adults are drawn to Sam’s fun friendly nature and positive attitude.’

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 ‘One of Sam’s many lovely qualities is his empathy. If another pupil receives praise or is celebrated for an achievement Sam will start to beam and become very excited.’

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 ‘Sam has fantastic understanding of the spoken word and can communicate with adults using his communication board, his PODD book, symbols or just by gesture.’

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 ‘Sam has really flourished with phonics activities this year, and with the continued support he receives from his family he has excelled in this area. Sam can now recognise a variety of letter formations and can confidently identify their sound. For example when presenting Sam with a choice of four sounds: ‘igh’, ‘th’, ‘er’, ‘ue’, Sam can confidently read the letters and communicate this by eye pointing.’

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 ‘At the beginning of the year Sam required support at the trunk to sit independently. Now in soft play when he is propped up against the slide he can sit cross legged completely on his own for up to two minutes! This has been such great progress and we are all really impressed with how hard Sam works in these sessions.’

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We are incredibly proud of him, so pleased he’s had such a brilliant experience of school so far and so thankful for such talented teachers and assistants. What a geek! Like mother (and father), like son.

 

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.)

Broadening Horizons

When I was doing my post-graduate diploma to become an architect, I studied at a very well-respected university in London. Through a complicated, confusing process of admissions, I ended up in a teaching unit with two eccentric tutors. They dedicated themselves to broadening the horizons of their students as widely as possible, the manifestation of which was to teach us as little as possible about buildings while having long (and occasionally unintelligible) conversations about cybernetics, pataphysics and (in the case of my work) weaving.

For me, it wasn’t a hugely successful approach and I didn’t thrive in an environment so self-consciously wacky, but I respect their intention. Life, and particularly professional life, is rarely as varied and fun as one would like so it’s important to broaden horizons before they are narrowed by the requirements of a Local Authority Planning Officer.

I carry this idea in to my parenting. I think the role of any parent is to provide as many possibilities as possible, to raise a child that believes they can do what they want and understands how big and rich the world around them is. Of course I have prejudices and opinions which I can’t help projecting on to my kids – I would like my sons to contribute, I might struggle to rouse enthusiasm for them being bankers – but I mainly want them to feel they have options.

Naturally our aspirations for Sam have adapted a bit to fit his talents. James has had to accept that the already low probability that he’d play international rugby has further decreased. But that’s okay – I have never been hugely keen on the idea of my (inevitably) slight sons being pummelled – we just need to find some alternative possibilities and role-models.

Much of the world is still open to Sam. He can read and spell at an appropriate level for his age so as long as we can facilitate his communication there is no reason that he can’t do all sorts of exciting and interesting things. Once you start to look there are lots of people with profound communication difficulties doing brilliant jobs: Stephen Hawking obviously, the media’s favourite disabled person.

I recently came across the work of Jacqueline Smith – an artist who is physically disabled – through my mum spotting something in a Printmaking magazine. Following some internet detective work, I found the Eye Can Draw project which aimed to establish greater access to printmaking for artists with disabilities in Dundee, Scotland. Amongst other things, they linked eye-gaze technology with graphic software, and then used the drawings to make prints using various printmaking techniques.

Once you think about it, it’s an obvious thing to do. But it hadn’t occurred to me. Sam uses an eyegaze computer to play games; why not encourage him to make art this way?

THIS IS WHAT IT’S ALL ABOUT. These are the people we need to know about. Not just taking Sam to art for kids and hoping/helping him to use his hands, but finding role-models, and their work, which is inspirational in both process and end result.

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I loved Jackie’s prints, and I’m pretty sure I would have liked them even if I hadn’t been so heartened and inspired by her methods of production. She is a talented artist who just happens to make her pictures via some specialist technology, which itself requires skill and expertise to use. It is no surprise to me that Jackie’s work was nominated for the Lumen Prize 2014, for art created digitally.

So I bought one! I pretended to myself that it was a present to Sam. I had a very friendly email exchange with Jackie who was concerned that the scale of the print would be intimidating in a domestic environment, but I can’t think of anything better than eye-catching eye-gaze art. Let’s intimidate ourselves with the positivity of disability.

The print is now framed and yes, it is rather large. I might make it my goal to only buy pictures that are the same size as my children.

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Sam’s Dad

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

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

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

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

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

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

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

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

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

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

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

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

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Advice

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Late last year I gave a talk about Sam and myself to about eighty paediatricians taking part in a training day at the Royal Society of Medicine. I had twenty minutes to give ‘A Parent’s Perspective’. The main challenge was to edit sufficiently to fit within time – given the opportunity there is much I can think of to say. If I were allowed to do Mastermind with Sam as my specialist subject, I would blitz it.

They were a receptive audience and gasped (‘Sam had 157 appointments last year’) and laughed (niche jokes about junior surgeons’ lack of interpersonal skills) at the appropriate points. I was asked a number of very perceptive questions at the end, but I was really struck by one:

“What do you wish you had known, or had been told, when Sam was born – and what would you advise someone just starting out on a similar kind of life to yours?”

I didn’t immediately know how to answer this, but after a momentary panic in front of a large audience, I thought of something and here I will expand on it.

When Sam was in hospital just after he had been born I was expressing breastmilk for him, something I was finding relentless and dispiriting. A breastfeeding support worker put me in touch with a woman I will call E, who had expressed for over six months because her child had difficulty feeding.

Once Sam came home from hospital I couldn’t keep up with a brutal regime of pumping, bottle-feeding, tube feeding and sleep deprivation, so I stopped expressing milk. But by that time I was in touch with E anyway, and she came round for a cup of tea. She told me she thought I was doing brilliantly which was incredibly encouraging.

Meeting her in the first few months of Sam’s life was hugely important. Her son was very different from mine, with a totally different condition, but there were similarities between our lives – not least the shock of realising things are not (and probably won’t ever be) as you expected.

Most importantly, she was heavily pregnant with her second child. The idea that she had been able to accommodate all of the difficulties of her first child sufficiently to decide to have another one gave me hope. Not just that it might be possible to have another child, but that our lives might one day be as optimistic.

I stayed in touch with E and we met periodically, through my emergence from the fug of the aftermath of Sam’s birth, and the births of my second and her third child. It was comforting and fun.

This kind of camaraderie is not unique to parenting a disabled child – much of the success of NCT is because new parents need solidarity and someone who understands the challenges and joys of a brand new baby. But finding yourself talking to a parent of a disabled child is a bit more niche and therefore perhaps a bit more special. There is huge solidarity and comfort in talking to people who have experienced similar difficulties to you, who you don’t have to explain everything to. It is most uplifting if those people are thriving, but actually any contacts will do.

I have since met many other mothers of children who are disabled, complicated or simply non-typical. I tend to find these conversations are accelerated – with no need to do as much explaining, we will very quickly be discussing private feelings and traumatic experiences. We recognise the similarity of our lives, and our subject matter touches on all of the most intimate and important aspects of being human: what your priorities are, who you were and who you have become, how and who you love.

Or sometimes I’ve just had a chat about purely practical matters. No deep connection, but getting the number of a good physio is valuable. Sometimes having a disabled child in common is not enough, and someone is just not my kind of person, but that’s fine. Sometimes things are not going very well and I just need to hunker down and get through it, not talk to anyone.

Over the years these acquaintances have come in many guises – friends of friends, women from the supermarket, bloggers, parents accompanying their children to sessions at Small Steps or fellow students on a course. I have valued these connections hugely.

So if I met myself five years ago, I would say find some friends who have been in a similar position. Either online or in your city. There are people who have survived a life like yours, and many who have thrived. You are not alone.

(You could always send me an email)

P.S. These photos were taken by my brother-in-law, a paediatrician, who attended the conference. People thought he was really weird and a bit obsessed with me and Sam until they realised he was related to us.

P.P.S. I think of my approach to make-up as quite restrained. These photos would appear to show otherwise.

‘I feel sick’

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I am having an incredibly boring couple of days. Sam has vomiting and diarrhoea. It has unfortunately coincided with the days when we do not have help from nannies/carers and Eli ‘settling in’ to a new nursery. Obviously Sam can’t go to school. It’s not really possible to look after both kids so James had to take yesterday off work. As always, my work gets pushed aside.

Any parent is familiar with the curious mix of boredom and worry that accompanies having a sick child. Eli’s developing speech means he can now tell you a lot of what he thinks or feels, so when he woke up vomiting on Saturday night he could scream ‘I sick!’. Over the next few days he could tell us that he felt sick, that he needed a cuddle, that we needed to be gentle when we changed his nappy. It’s not fun seeing him ill, but amazing that he can be so eloquent about it.

That’s the first time we’ve nursed a speaking child though an illness – we are much more used to a child who is unable to say how they feel or what they want. Sam is often sick; when he vomits we have to wait and see whether it’s a sign of illness or just another bit of reflux. It became clear yesterday that he was ill and couldn’t go to school. So ill that we stopped all food and he had small amounts of dioralyte (though his gastrostomy tube) while watching hours and hours of TV. Today he woke pale and quiet and withdrawn. By mid-afternoon today he’d had half a banana (whizzed up in the blender and pushed through his feeding tube) and was complaining that Bob the Builder was unsatisfactory entertainment so hopefully he’s on the mend.

James and I know Sam so well we can generally tell by his movements, facial expressions and noises whether he is happy or not, whether he’s in pain or content. But we never know what’s coming – he can’t tell us he feels sick before the inevitable puke. He can’t tell us he’s hungry to indicate his tummy is ready for some food. So we just have to guess, and sometimes that means what goes in comes right back out again. So. Much. Wiping. And entirely homebound.

Earlier this week Sam had a general anaesthetic in order to have some tests. Other people can have this scan without sedation but Sam would move too much. It meant a whole day in hospital while we prepared for and then he recovered from the anaesthetic. Sam’s five weeks in hospital after he was born has left us with a strong distaste for the artificial light, overheated rooms and lack of control of a stay on a ward. It never gets any easier leaving Sam after he’s been anaesthetised (he’s had two operations related to his gastrostomy), sitting around eating M&S sandwiches while wondering what’s going on, worrying that he’ll wake up and won’t know where he is. It’s horrible when they do say you can go and see him because he’s confused and upset, and looks tiny in the massive hospital bed.

One of the questions his assigned nurse had asked in the morning was whether Sam could talk. We said no, but that he understood speech. Throughout the day we told him who each new person he met was and explained what was going to happen. Sam hates any kind of fiddling (he cries when he is weighed, even though this only means being held by me while I stand on some scales) but after 45 minutes of ‘magic’ cream on his hands and a lot of warning, he was surprisingly okay about the cannula being put it. They took blood at the same time as preparing for giving him the anaesthetic. Sam has a yearly blood test to check he is getting all of the necessary nutrition, something he finds traumatic. At least this reduced the number of times he’ll need to be pierced with a needle.

In the afternoon, as he recovered and waved his bandaged arm around, he started complaining that the entertainment was not up to scratch. A sure sign that he was on the up. He then whinged when the nurse came near him with a pulse/sats monitor. His nurse understood what he was trying to say, ‘You said he couldn’t talk, but I’m in no doubt what he means.’ Indeed.

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.