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…

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Appreciating good doctors

Our family, and Sam in particular, are pretty intense users of the NHS. I breezed through my twenties with barely a GP appointment but in the last six years we have been really getting to know the people and processes that make up our national health service.

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In the last three months Sam has had brain surgery followed by eight days in two different hospitals. In that time, he has also had six outpatient hospital appointments (one of which lasted 3.5 hours and involved three different professionals), one appointment with our community paediatrician, two orthotics appointments and one visit to the wheelchair service. That doesn’t include his frequent contact with physios, occupational therapists and speech and language therapists at school.

Making our lives the best they can be relies on building relationships with good doctors and therapists, and when the NHS works well it works really bloody well. This was really been demonstrated last week.

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(Photo of Sam in a hospital waiting area. Every time we go he stares avidly at this explanation of wind speed measurement until we read it to him.)

On Tuesday we went to a clinic we had never been to before, where Sam was seen by a consultant paediatrician, a specialist speech and language therapist and a specialist technologist in order to look at the way he communicates. Before we even got there, the team had already made contact with our community paediatrician, three different speech and language therapists who have worked with Sam, and asked us to fill out a questionnaire. Sam’s school speech and language therapist came to the appointment with us, and after hours of working with Sam and much chat, everyone concluded that they needed to spend more time with him. So all of those professionals will visit Sam at school in the coming weeks and months and then we will meet again.

Later in the week we saw Sam’s neurologist, let’s call him Dr D, who we have now known for the entirety of Sam’s life. Following a discussion about Sam’s brain stimulator, he called the neurologist who fitted Sam’s stimulator (at a different hospital) to check he would see us at another appointment next week. We then ran through all of the major aspects of Sam’s life, discussing progress and options, and he warned us (in a friendly way) not to underestimate Sam’s intelligence.

The same night, at 6.30pm, I got a phone call from our GP regarding recent problems with Sam’s medication. After discovering that there is a national shortage of one of the medicines that Sam takes daily, he had called the hospital pharmacy and one of Sam’s neurologists, and had worked out a way of us getting the medicine in the short term until the normal supply is resumed. He had made about six phone-calls on Sam’s behalf, to find a solution, and only called me when he had fixed it.

I would like to take a moment to give some advice to anyone who finds themselves in a situation similar to ours, who sees as many doctors as we do. Our GP practice is the one that Sam was registered with when he was born. It has not been the closest surgery to our house for several years but I took a view that I would rather have the consistency of a practice I knew and doctors I respect than move to a more geographically convenient surgery. Of course I get frustrated with their phones being engaged and with nurses who won’t give Sam the flu spray, but these niggles are far outweighed by having access to a good GP who knows Sam and the rest of us.

Similarly, Dr D is based in our local hospital where the outpatients’ clinic is always too hot and there’s nowhere to change Sam. There is another hospital a bit further away, that has a fancy new children’s hospital building, excellent changing facilities for disabled children and a Marks & Spencers Food shop.

It has been suggested to us that we should move neurology consultants and have everything at the other hospital, but I can’t quite tell whether this is because they think the doctors are genuinely better at the swankier hospital or because they have been seduced by the surroundings. Either way I see no reason for us to move – Dr D is excellent, knows Sam, knows Eli, knows us, and calls doctors in the other hospital on his mobile to talk about Sam if he needs to. Most importantly, we like him and, as far as I can tell, he likes us. So we’re sticking with him for the time being, and if that means buying a limp ham sandwich for lunch rather than having the option of M&S sushi, then so be it. If you find a doctor you respect, stick with them.

I haven’t familiarised myself with the recent specific arguments between the Secretary of State for Health and junior doctors, largely because I’ve been spending a lot of time sitting in hospitals. But it is worth taking some time to appreciate the level of commitment and expertise of the doctors (senior and junior) involved in Sam’s care, how hard they work to solve problems, how late they stay to resolve medication issues, and how very nice they all are about it.

Chairs of Freedom

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Using a wheelchair is a sort of shorthand for being disabled – easy to understand, simpler to explain than a gastrostomy or dystonia or dysphagia, and a good graphic symbol. It is the approachable face of disability – a chair with wheels! We all understand chairs!

But of course they are also intimidating. Many parents of recently diagnosed babies wonder whether their child will walk, whether they will need a wheelchair. Lots of people have asked us if Sam will walk, whether he will always need his wheelchair. Everyone is preoccupied with walking, when its significance for us has been eclipsed by other more pressing matters. At least weak legs can be compensated for with a chair; finding a way to get round the inability to eat or talk is much more complicated.

If you have the good fortune to walk up stairs and run up hills then a wheelchair seems incredibly restrictive, something to be ‘confined’ to. However, if you find walking difficult then a wheelchair is an optimistic, helpful aid – providing the opportunity to get out in to the world (stairs/kerbs/snow/sand/mud/gravel/cobbles permitting). It’s crucial that it fits right, that it supports in the correct way. Sam spends hours in his.

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Sam’s wheelchair is provided by the NHS (I think, to be honest I’m not certain) through our local Wheelchair Service. We’ve worked our way through a couple so have visited numerous times and once we’re there we meet knowledgeable therapists who try their best to find and adjust the best chair for Sam.

But the process! The process of getting to the actual appointment is enough to drive me nuts.

Unlike every other aspect of interaction with therapists who work with disabled children, there is no process for review except for me to think, ‘Oh, Sam’s grown! He’s not looking as comfortable in his wheelchair, let’s make a wheelchair appointment’. Or to think, ‘Actually he’s flopping to one side in this chair, it could do with an expert reviewing it’.

Meanwhile, if something on the wheelchair breaks, we’re supremely relaxed. Should we find ourselves in a restaurant for lunch and Sam’s footplate drops on to the floor, we just call Wheelchair Maintenance. That is a totally different ballgame. One phone call and they will visit Sam’s chair at school the following day, wheel it off in to their magical van, and back it comes Good As New.

But if I phone the Wheelchair Service because the chair needs to be adjusted or reviewed, they put Sam on their waiting list. Two – four months later he gets an appointment, generally in the middle of the day so he misses hours of school.

One/two/three months is a long time for a boy who sits in the chair every time he leaves the house. Every time he visits the cinema, or gets on the school bus, or goes to meet Michael Rosen.

Of course, what actually happens is that I wait until Sam is looking like he might possibly be getting a bit longer and so in approximately three months time his chair will be too small, and so I phone and put him on the list.

It seems to me ironic that it’s so hard to see a wheelchair therapist, when they more than anyone realise the value of a good wheelchair and take pride in making sure wheelchairs are comfortable and practical.

This is an absurd system. It is bonkers to not acknowledge that children grow. Every other piece of Sam’s equipment can be adjusted by a physio or occupational therapist at home or school, and they will do it within a week or so of a problem being identified.

I have no doubt the reasons for such a creaky system are many and varied; I have expressed my frustration at length with the friendly, talented therapists who work for the service! Presumably there’s not as much money as there could be in areas like this. I have been told it’s difficult to recruit therapists to wheelchair services – it’s maybe not the most glamorous end of the physio world. The service has a high rate of DNAs (Did Not Attends) because by definition the kids they see are more complicated than the general population, more likely to be ill, more likely that something will come up last minute, and the DNAs mean fewer appointments to go around.

One of the advantages of having a comfortable, functioning wheelchair is you can use it to go ice skating. Then you realise that being in a wheelchair works incredibly well. Ice is one of the few environments where people in wheelchairs experience no inconvenience, while walking people are near-incapacitated. Hanging on to Sam’s wheelchair becomes really helpful, and then we can whizz him around at high speed, something he loves, as long as we go as fast as possible.

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(Yes, his shoe fell off. We are in a war of attrition with that right shoe.)

‘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.)

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.