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.