Hearts and minds

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 Ben to different professionals with slightly different emphases. This is true through from the apparently simple (what should we be feeding Ben?) 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.

Ben 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 Ben 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.

Ben 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 Ben, 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 Ben’s) 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 Ben 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 Ben 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 Ben 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 Ben’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 Ben 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 Ben’s condition, is that aspects which aren’t particularly medical become medicalised in all of our minds. We were worried about Ben’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 Ben 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 Max – because they appreciate that Ben 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 Ben’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.



In the early 1980s disabled people came together and redefined what they meant by disability:

‘Disability is the loss or limitation of the ability to take part in the normal life of the community, due to physical and social barriers’ (adopted by Disabled People’s International, Vancouver 1921)

They basically turned the whole thing on its head – rather than being defined by what they were told they were unable to do and what was wrong with them, they self-defined as being disabled by the fact that the world around them wouldn’t let them participate and be included in the way they would like, whether through, for example, physically inaccessible buildings or prejudiced attitudes.

This was a revelation to me and made me think differently about Ben and what he can do, and how we deal with it. It is connected to the theories of medical and social models of disability of which more here.

The problem with inaccessibility (of all kinds, physical and social) is that you become conditioned to it. Buildings are difficult to get Ben in to and so we start thinking it’s easier to stay at home, or only go to places we’ve been to before. People say insensitive things to me about Ben and I bring him up in conversation less often. For a multitude of reasons, Ben doesn’t make friendships with peers and doesn’t get invited to birthday parties so we get used to basing his birthdays around family (adults). Ben can’t go to the local school because the building doesn’t have a lift and they have no experience of physically disabled kids. So it goes on in tiny and massive ways until disabled people aren’t taking part in life around them in the way they could be if everyone made a little more effort.

The most frustrating thing about all of this is that it’s a predictably vicious circle – disabled children/people aren’t as visible or as involved in their local communities as they should be so they become withdrawn and isolated. They are then not visible so people think of them as different, and so it becomes harder for them to be involved, all the time being labelled as being dependent when integration would be the first step to them become less dependent. It’s a bit depressing.

It is important that the disability rights movement continues to fight for better access, more inclusion, more acceptance of difference, but I think the world also gets better by individual people doing kind things and being welcoming and understanding. It is impossible to overstate the significance of small acts of friendship.

In the middle of a long drive to Cornwall in April we stopped at a service station to give everyone some food and a break. I was sitting in the over-lit buffet restaurant on my own with Ben since Max had broken free to play on a massive plastic train, and was feeding him through his gastrostomy tube. I had noticed out of the corner of my eye an older couple looking at us – not in a mean way, just a curious glance, and thought nothing of it. I am totally used to looks, but have an amazing ability to filter them out (aside: a skill honed by being the only female architect on building sites in the Middle East). Before I spent every day putting liquids down a gastrostomy tube, I would have been mightily intrigued by a woman getting out a load of syringes and fiddling with her child’s tummy in the middle of a cafe. Ben was watching his ipad and happily oblivious.

The couple got up to leave and as they walked past us, the man said ‘Could we say hello?’.

‘Of course’, I said, ‘Hello! This is Ben.’

We had a brief chat about what Ben was watching, how he was, what his brother was up to, and they said they had seen Ben smiling from across the restaurant. Then we all wished each other a happy Easter, and said goodbye.

I would bet my new clogs that they have some personal experience of disability, but they didn’t mention it. They just made us both feel welcome and happy. I’ve thought about that couple at least once a week ever since because those kind of interactions are rare, and the world would be a better place if there were more of them.

P.S. Banana Man (as he was christened in my previous post) continues to earn his place in my heaven. Last week he gave Max a free chocolate bar to distract him from shouting in my ear while I was trying to pay for some milk. I then let Max eat the chocolate bar in the car because I’m a weak parent, which resulted in him bathing his entire car seat in melted chocolate, and me spending an evening dismantling the whole bloody thing to clean it. I preferred it when he stuck to bananas. And also I am a bit worried about his profit margin.


I’ve been on a training course for the last year or so, learning to be an ally to Ben. I’ll come back to what ‘ally’ really means in this context, but one of the things we looked at is Circles of Friends (sometimes called Circles of Support).

My (superficial) understanding of this idea is that it is a process to intentionally help people make friends – for people who are finding it difficult to make and keep friends on their own, who are feeling isolated. The key principles are that no-one is paid to be in the Circle and it is based on asking the focus person what they want (not what other, even well-meaning, people think they want). It’s mainly used for teenagers and adults. In practice, it means a group of people who agree to meet regularly and assist someone to fulfill their dreams and ambitions.

It’s a way of concentrating attention on the ‘focus person’ and trying to look at what that person would like from their life and help make that happen within their local community – it could be ‘going to the pub’, or ‘moving house’ or anything inbetween. There’s an example in action here.

I found it fascinating but not that relevant to us right now. Ben is 4, surrounded by friendly people at school, nursery and home; we’re not at that stage yet.

Last week it was half term and Ben and I went to buy some avocados. I went in to pay, leaving Ben in his wheelchair just outside, and as I handed over the money I glanced at him and he gave me a massive grin. As I looked away, I thought I saw him smiling at a man who works in the shop who was organising the fruit. When I came out again, the man said hello to both of us, smiled at Ben and offered him a banana. We all smiled a bit more, said thank you, and off we went to return home.

We have history with Banana Man (as I’ve just decided to call him). Last month, Ben and I went to the same shop. It was after school and Ben was tired. As we arrived, I put Ben’s wheelchair near the fruit outside the shop and at that exact moment a dog, which was also being left outside while it’s companion did some shopping, started barking. Loudly and insistently. Ben has trouble managing his swallow with his breathing and if things take him by surprise he can lose control for a bit, which throws everything out of kilter. In this case, the shock of the dog barking (and barking, and barking) meant he started choking. I quickly wheeled him away from the shiny ripe fruit by which time he was vomiting. So I take him out of his wheelchair and we’re both hunched on the pavement, when soon-to-be Banana Man comes up with loads of tissues and a concerned expression, asking if he can help. Actually there’s nothing to be done – I clean up Ben with the donated tissues and we head home (without any milk). It was an unfortunate incident for both Ben and my tea addiction.

We have a 2 year old, Max, who is a bold, bolshy boy. He’s loud and cute and we rarely take him anywhere without someone commenting (in a nice way) on him, what he’s doing, what he’s good at, how funny he is. Small children are fantastic social conduits and people who normally wouldn’t interact become chatty with Max around. You can bet your house that if you walk to the shop with Max, someone will acknowledge him at some point. That happens a lot less with Ben – he’s physically passive, he doesn’t talk and interrupts people less. Maybe people notice his wheelchair more than him, or they’re too busy thinking about bananas to notice how beautiful he is.

The banana thing made me think that tiny incidents like this are our small, less formalised version of a Circle of Friends for Ben. He can’t currently make friendships easily so these small connections are important to us – Banana Man knows who Ben is, smiles and interacts with him, and makes us feel like we belong in our little community. He smiled, and Ben smiled back, and that’s where a sense of connection begins. Mr Banana might not realise it yet, but I’m now rather fond of him.

Ben held the banana all the way home (no mean feat for a boy with a tricky relationship with his hands) and was very pleased with the whole trip. I am thrilled that the cheapest shop in our local parade is the one Ben is forging links with – if he’d picked the shop next door we’d be bankrupted buying £5 loaves of sourdough in an effort to encourage friendship.