A Parent Perspective: Interview with Sabrina

My son, Ben, is about to turn 11 and my approach to his disability has changed a lot since he was little. I am interested by how and when this happened. I knew very little about disabled people when he was born and my experience of being his mother has been a rapid education in the issues surrounding disability. If I had known then what I know now, I would have done things differently, but I was just doing my best with what I knew at the time. I think I would have found it helpful at the beginning to have read stories of other parents with similar experiences and so I am starting a series of interviews with parents who are raising children who are not typical. We will discuss parenting, language and expectations. This week it is with Sabrina Russo, who kindly let me video call her one evening to answer some questions.

Could you describe your family?

I am married to Simon and I have two children – Theo, who’s about to turn seven, and my daughter, Lucy, who’s going to be four in April and she is the child with disability in our family.

What does Lucy love? What is her favourite stuff, what makes her happy?

She loves Peppa, completely. She loves the swings at the playground. She’s actually getting too big to lift into the baby swings and there’s no other accessible options so that’s something that’s going to start annoying me very soon. She loves singing. She is a real scribbler, especially on the table rather than on paper. She loves having stories read to her. 

When did you realise Lucy was different to your older child, or not typical perhaps?

I noticed that there were certain things that she wasn’t doing when she was about four months old. That sparked a kind of question mark, in my mind. I remember putting her in a baby bouncer that had little dangly toys and suddenly thinking she doesn’t swat them in the way that I remember Theo doing. I thought she was very relaxed. I took her to a baby physiotherapist who said she was a bit floppy but he wasn’t alarmist in any way. I googled hypotonia, which is weak muscle tone, and I remember reading one line that said hypotonia is not a condition itself, it’s always a symptom of something else. I then went down a rabbit hole of trying to diagnose my kid and many months of not being taken seriously by medical professionals. 

That was tricky because you don’t want to be the mother looking for a problem. People would say, ‘Well, she’s just taking her time. Don’t worry about it.’ But there were lots of little things that were adding up in my mind. When we got to the point where she ought to be weaning she couldn’t swallow any purees. She started having some tests and when she was one and only just sitting up the doctors started properly looking into it. They did a genetic screening and that showed there was a bit of her DNA missing. I think the period was maybe nine or 10 months of searching for an answer and when it came I felt vindicated in a weird way. It was kind of a relief. But it wasn’t a straightforward diagnosis in the sense that it isn’t a genetic anomaly that correlates to a recognised syndrome because there aren’t enough people that have it. There wasn’t a ready-made support group where I could find out about things and get a glimpse into the future, so there was quite a lot of sort of worry and uncertainty at the beginning.

How did you find the early years with Lucy?

She was a very undemanding baby. She didn’t really cry much and she was very observant. She just slotted into family life and Theo was very sweet with her.

But after we had her diagnosis I had a feeling that I had no idea what I was doing. From the practical stuff of accessing services and doing what’s right for Lucy, but also at a deep identity level. I already felt like being a parent was quite hard. There’s loads of stuff that you don’t know if you’re doing right. I felt the weight of responsibility of this child being more vulnerable than we had imagined and we have to make sure that she has a good life. 

Now, a couple of years post diagnosis, I know that in a lot of ways it’s not that different to parenting any child. There’s a kind of relinquishing of control that happens anyway when you are a parent. It’s always a big responsibility. With typical kids you have all sorts of situations that you feel slightly out of your depth. All the time. But I had a kind of slight imposter syndrome – I had this kid who was going to need me to be a good parent, as opposed to a good enough parent. I felt like I needed to up my game, be more professional. It wasn’t that I thought she was a burden. It was more a reflection on myself. I worried about me as much as I did about her – about my, our, ability to be the people that she would need us to be. 

What is different from how you imagined parenting two children would be?

I don’t know what my expectations were. I think I had expected that they would be friends in a way that they’re not right now. Lucy adores Theo and is fascinated by everything he does. And he is really sweet with her but they don’t play. But they both really like having stories read to them so we can all read together. 

I think we do a lot more split parenting, where one of us takes a kid each and we do the thing that is appropriate for that child in order for them to have a fun time. Then we reconvene as a family rather than trying to do everything together, because it often doesn’t work. You have this notion of what a good family life is and you think that means doing everything together, but that’s not necessarily what it has to look like. 

What have you found hard, over the course of Lucy’s life?

I found it hard at first knowing how to talk about her disability. I still find it hard in a way. I don’t know how much to say. When you first meet people, how deep do you go? I’m someone who is really private in some ways and a big over-sharer in others. I sometimes tell people more than they are expecting and then they get that look on their face, and I’m like, ‘Oh, no, don’t worry. It’s okay.’ Or I don’t say anything at all, but then sense that the other person may be looking at Lucy and wondering ‘why isn’t she walking?’. I’d like a handbook for navigating social interactions so they aren’t awkward. In a way, I think this will only get easier when society as a whole stops being so weird and awkward about disability. It just needs to be a normal, ‘fact of life’ thing to talk about.  

When you’re in a couple and you’re processing stuff at different speeds, that’s tricky. My approach to the early days was knowledge is power – I’m going to absolutely learn everything I can until it desensitises me to the shock. I reached out to parents whose kids had not exactly the same genetic deletion as Lucy’s but close. It turns out every single child had a completely different set of things. I’d come back and say to Simon, ‘I spoke to this mum and her kid is completely non-verbal but she can walk and she can do x and y’. Then I’d talk to another parent and say, ‘her daughter speaks, she speaks loads, and she’s autistic.’ So I was trying to prepare myself for all the eventualities – Lucy might speak, she might not speak, she may be autistic, she may not be autistic, she might walk, she might not walk. I wanted to know about all these possibilities so they wouldn’t faze me. Whereas my husband, Simon, was kind of in denial and didn’t want to know about the future.  He had the attitude of Lucy is Lucy. We’ll just take each day at a time and we’ll figure it out, whatever happens. Navigating our relationship with each other was difficult at times while we struggled with that tension.

Now, we’ve met in the middle and taken each other’s perspectives onboard. Initially I found Simon’s approach quite frustrating, but I think our paths have converged which is good. If you do come out the other side, you do feel like your partner’s really got your back and you’re a team.

Are there things that make you angry, or are there things that you feel like parenting Lucy has opened your eyes to?

The process of accessing benefits and services can be bewildering. I put off applying for DLA for her for ages – I’d take one look at the pile of paperwork and think I couldn’t face it. Now we’re trying to get an EHCP and it’s so much harder than it needs to be. It’s just unnecessarily difficult and it’s clear that those difficulties are a way of discouraging people from doing it, right? Nothing is co-ordinated. 

I’m not even thinking yet about physical accessibility of buildings and urban planning because we’re still in buggy mode and we can mostly lift her. But that will soon become something that I start getting angry about. I was with Lucy at a big station the other day and the lifts weren’t working. That’s just unacceptable – this is public transport and this is a member of the public. If you’re going to do maintenance on a lift you need to figure out some alternative. 

There’s loads of stuff that is unnecessarily onerous for disabled people and then you wonder why you don’t see so many disabled people around. It’s like a self-fulfilling prophesy. You don’t see people out and about having a good time because places can be so inaccessible, and because there’s this lack of visibility, disabled people continue to get overlooked. Disabled people can and do have full lives, but society doesn’t make it easy. All of that makes me angry. Not for me obviously, the impact is on my kid. She’s the one who ultimately stands to gain or lose, I’m just the middle woman. 

I also found it quite remarkable that throughout the whole time when I was trying to find out what was going on with Lucy and then getting her diagnosis, at no point did any one of the millions of professionals that we’ve come across ever ask me ‘How are you doing? Are you okay?’ Thankfully I am, but there were moments when I felt overwhelmed. The system doesn’t think holistically about families and helping the whole family. 

How have you changed since having Lucy, and what has helped you?

Before Lucy, I had no real first-hand experiences of disability and my perceptions, I now realise, were heavily influenced by a lot of limited narratives that we see in the media and popular culture. I think it’s important to seek out and meet people if you can in a similar situation, because you see that often they are living a pretty normal life. I took to Instagram early on with the purpose of finding people who were leading the kind of good lives that I wanted us to be able to have and that’s been really helpful. I needed to see the things that I felt were important to us, that I wanted our future to have – fun, adventures, travel – and that I worried (because I didn’t know) that having a disabled kid would make impossible. I was, I am, determined to find people who are doing it and actually there’s a lot out there. That was really good for me in the absence of support groups for Lucy’s condition. 

Since having Lucy a lot of stuff makes me very emotional. I am very touched by people who really see her. People really warm to her because she’s a very joyful kid. And celebrating all her hard won achievements, every tiny milestone, cheesy as it sounds, really has helped me savour them and focus on what matters. 

Find Sabrina on Instagram @sabrinamrusso

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A Parent Perspective: Interview with Alex

My son, Ben, is about to turn 11 and my approach to his disability has changed a lot since he was little. I am interested by how and when this happened. I knew very little about disabled people when he was born and my experience of being his mother has been a rapid education in the issues surrounding disability. If I had known then what I know now, I would have done things differently, but I was just doing my best with what I knew at the time. I think I would have found it helpful at the beginning to have read stories of other parents with similar experiences and so I am starting a series of interviews with parents who are raising children who are not typical. We will discuss parenting, language and expectations. This week it is with Alex, who kindly joined me for a walk in the pouring rain to answer some questions.

Could you describe your family?

I’m Alex. I have a husband and two children – Betty who is 11 and has complex needs, and Agnes who is nearly nine who doesn’t have complex needs. And a dog – a recent addition to our family!

What does Betty love doing?

She really loves singing and listening to music. Swimming and being in water. She likes being with people that she knows, though she struggles to know how to interact with them so that can be tricky. She loves Ben (Jess’s son), and his speaker! And bubbles. 

How would you describe Betty? Would you say she was disabled?

Betty has some physical delay and she looks different and so sometimes I describe her as disabled and sometimes I say she has special needs. I think I refer to her having special needs more to do with behaviour, and say disabled more for her access needs. I remember when she was born and a nurse was talking about her having complex needs and I was really confused. I asked, ‘Oh, has my child got special needs?’ and she said yes. I didn’t know what the terminology meant. But now I use both.

When did you realise Betty was going to be different or disabled?

I was referred for tests during my pregnancy which showed she would have a rare genetic condition that nobody else has so we didn’t know what it would mean for her. As soon as she was born she wasn’t breathing, she was very still and didn’t cry at all for the first few days. She was floppy and couldn’t feed so there were immediate challenges straight away but the magnitude of it didn’t hit me until later.

How does Betty’s disability affect her day-to-day life?

It affects everything to do with her day-to-day life. Her genetic condition has affected her physical and mental development. As she’s got older she’s been diagnosed with ASD and ADHD, eye problems, scoliosis.

When she was a baby everything was focussed on her fine and gross motor skills, like sitting up and holding things. Initially it was all about endlessly grasping toys and trying to get her to stand. We had loads of equipment – a walker, a standing frame, a special chair, a wheelchair and all that. Then things moved on to her speech and language. Now our focus is on her behaviour because she’s very anxious and she gets very frustrated and which manifests itself as quite difficult behaviour. Now we have less equipment but her needs impact our family every day and she needs care all the time, in everything we do.

In what ways is your life how you expected it to be and in what ways is it different?

I was trying to have a kid for years and I couldn’t so we had to have fourteen rounds of IVF and then egg donation, and I had two miscarriages as well. By the time I had Betty I was so thrilled, so thrilled, to have a child I think that overwhelmed everything else. I couldn’t quite believe I’d got pregnant and had a baby. When she was really young I remember walking about in the rain one day and I was crying because I was so happy because I had a baby. Even though she was in hospital all the time and had to wear a helmet and actually it was quite difficult.

It’s maybe not what I thought it was going to be, but I don’t honestly know if I thought that far ahead because the pregnancies kept going wrong. Then once she was here I couldn’t think about the future too much because it’s too scary. 

We’re very fortunate, very lucky in lots of ways, but it can be difficult. When I was pregnant with her and I knew there was something wrong, I thought my life was going to be hard. Everything I read, everything I was told, was all about how bad it was. There was nothing positive. It was all about the challenges you’re going to face, all ‘disability is bad’ and ‘she won’t be able to do this’, nothing about the benefit of just having a child, whatever they’re like. Just hanging out with them. I thought my life would be miserable and it’s not. 

Is there anything that could have made the difficult bits easier?

There’s been plenty of people that have been incredibly insensitive. The first few years were difficult because I was in it and learning everything. Every report and every doctor that we saw told us what she was not doing, or what was wrong. People would say things like ‘I don’t think she’ll go to mainstream school’ but she was two! I’d think ‘Why can’t we just focus on now?’ I was lucky that when Betty was about one I found an amazing community nursery and that was really life changing. They were so kind and welcoming whereas other nurseries just didn’t want her because she was more work. 

I think it would have helped if services had been more joined up and we’d had more access to services when she was little. Everything is stretched and help is limited. It comes down to money and understanding from people

We had a really lovely nurse that came and gave me a list of all the things I could access, like conductive education, Disability Living Allowance, but unless someone tells you that information it’s quite impenetrable. I think one of the best pieces of advice I would give is try to find some other parents with kids that are different. That is the biggest help that I have had, and that is often where you find the best information. Just because my daughter has a different disability to your son, it’s the same experiences we’re having, even though they’re different kids. In the way their siblings deal with it, or we deal with it, or our families. A lot of it is practical stuff. I think finding people who understand is profoundly helpful. 

What would you change if you could?

I would make Betty’s challenges less difficult for her so she could have an easier time but all the things that affect me are things that could be changed. When the Olympics and Paralympics were on in 2012 we went to the Olympic village and it was so easy and brilliant. If things were more accessible and people were more understanding and a bit more appreciative of difference then it would be easier for everyone. 

What do you wish people knew about your family?

When Betty started to walk, when she was four or five with a walker, people would all go ‘oh look! She’s walking!’ like that was it. I could tick it off. People have the best intentions, but they cling on to these things, like walking, when she still now has problems with her gait. It’s more complicated than just learning to walk.

I’d like a bit more understanding that you’re not saying no to things or not doing things because you’re being difficult or don’t want to but because you can’t. I don’t want pity, but there’s a lot of planning you have to do just to get out the door, or go on holiday, or feed my child. It isn’t quite straightforward. Everything takes time. 

Sometimes you’re knackered because you’re up all night, so maybe be a bit less judgey and a bit less pity-face. We’re not brave soldiers because we’ve got disabled children. We’re just mothers. 

Betty is an 11 year old child. She has special needs but it’s not all she is. It’s just part of who she is. She’s a kid. She’s my daughter and she’s funny and she likes ABBA. She can’t do lots of things but that’s alright. I think sometimes you can end up defining everything by about what your child can’t do not what they can. Don’t pigeonhole her. 

How has your parenting, and your approach to your daughter’s disability, changed over time? How would you describe how you have changed?

I’m more relaxed about it but I’m armed with knowledge and experience and I don’t think I could have fast-tracked it. I was so worried at the beginning about targets and appointments – every week there would be something at the hospital, but I quite liked that. It was like a security net in some ways being surrounded by people who knew what they were talking about. I felt like I was doing something. 

We did endless exercises at home but it all became a bit about that, to the exclusion of anything else. I remember talking to somebody who had taken a standing frame for their kid on holiday with them and they were doing it by the pool and now I’d be like ‘You’re on holiday! Why don’t you just not do that?!’. But you get so caught up worrying that something bad is going to happen if your child doesn’t do so many hours in the standing frame. Now I think I could have done three times the amount of time in the standing frame with Betty and it wouldn’t have made any difference to her development. 

I think having my second child made me realise that. I did very little with her and one day she just got up and walked across the room! I hadn’t spent hours showing her what to do or buying her special shoes. I think in hindsight I would try and just enjoy having a child irrespective of the fact that they’ve got a disability. 

People see me as the parent of a child with a disability not just as a parent. Sometimes it’s quite nice if you meet people who don’t know and they just treat you like everyone else, not be weird about it or try and help, try to make it better. People want to help and that comes from a place of kindness but it’s exhausting when they’re trying to fix it for you and it doesn’t need fixing and it can’t be fixed. 

Agnes had to have a massive heart operation as soon as she was born and the heart problem could have been an indicator of a disability. I was a bit more like ‘well, it’ll be alright, it’s just heart surgery’ but also I was a bit less scared of it. I’m not scared of disability. 

I’m not very good at asking for help and just to acknowledge that it’s harder for me than it might be for somebody who hasn’t got a disabled child was quite difficult for me to do. I don’t want to be needy. I don’t want pity. I don’t want a sad face and a link to an article about gut health. But some people will just bring you a meal round if they know you’re struggling. Sometimes I just want a lasagna, or a beer!  

Having Betty has completely changed my whole view of everything. You see everything through the lens of having a child with difficulties and it’s made me not sweat the small stuff. But also be a bit more tolerant of some people and a bit less tolerant of others. I’m more understanding of people who are different. 

I’ve met some of the greatest, loveliest people through having Betty and it’s made me think about things differently. I’ve had experiences I never would have had and lived my life in a way I wouldn’t have lived it so I’m grateful for that. 

Note: Some names have been changed.

When the personal isn’t political

I don’t often write about overtly political topics. I worry that I’m not sufficiently informed and haven’t done enough research to have an opinion that I want to make public. But in the current political climate, where it seems the people who really should know what they are doing don’t, I’m going to weigh in on something.

David Cameron’s memoir, For The Record, is about to be published and of course the main story is about Brexit. I definitely do not know enough to put pen to paper about that.

He has also written about his son Ivan in the book and an excerpt was serialised in the Sunday Times last weekend (behind a paywall here). My son is different to his, but they both have cerebral palsy and having a disabled child is something I do know about.

Cameron writes movingly about Ivan’s birth and the difficulty of managing his health needs. He describes the difficulty of your child being anaesthetised for operations, having a feeding tube inserted and becoming expert in managing tubes and syringes. All of this rings true to me, including the new normality of feeding your child via their tube on trains and planes.

This is the reality of many parents of disabled children and he and his wife, Samantha, clearly loved Ivan and like all of us did what they could to give their son what he needed. They learnt fast and stretched themselves. They didn’t anticipate being parents of a child like Ivan but got on with it with grace and determination. Ivan’s death in 2009 was a tragedy and I can’t imagine how sad they must have been. The grief must have changed them in ways I can’t possibly realise and will never go away.

The way he has described the reality of his experience means I find it really hard to read his account of Ivan’s life without wondering how he has avoided making the personal political. 

Cameron writes about how difficult they were finding it to cope when Ivan was young: ‘I found the phone number of Kensington and Chelsea council’s social workers, and soon, to my great relief, one of them was sitting in our kitchen, notepad in hand, talking about the help that was available.’ He describes how grateful they were for the help they received from children’s hospices. He recounts how he had visited a constituent, before Ivan was born in 2002, who had a severely disabled child and wanted his help with the lack of care her daughter was receiving and that he couldn’t have known that he would find himself with a similar child. 

It is rare for anyone to have sufficient power to effect real change but surely the Prime Minister is one of them. After coming to power in 2010 Cameron began a programme of austerity which saw the steady reduction of all services for disabled children. The government attempted to distance itself from the effects of its policies by claiming that it was up to local authorities to fund services, whilst reducing the money local authorities received so drastically that it was impossible for there not to be cuts. I am talking about services like social services, children’s hospices, physiotherapy, occupational therapy and specialist equipment amongst others. 

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My son was born in 2009. Our experience of parenting him has aligned almost exactly with the reality of austerity, and for us it has meant less of everything. All of the services we access have reduced. Our experience is not unique. 

My son, Ben, does not have epilepsy like Ivan, but he does have a feeding tube and is entirely dependent on us for all of his needs, night and day. I have never had a social worker come round and talk to me about the help that is available. My most recent experiences have been being unable to get hold of a social worker at all. We have been assessed and we are eligible for the following over a year: funding for two hours of help a week (at a rate that is less than market rates) and ten days of playscheme a year (9am-3pm). We used to get transport to and from the playscheme which is in another borough, but that has now been cut. We used to get occasional nights when Ben could stay at a children’s hospice but since the hospice receives no statutory funding and our local authority will not contribute, that has been removed.

The occupational therapy team that oversees equipment in our home is so overstretched that it is at least four months before someone can come and check the fit of Ben’s bathseat when it is uncomfortable for him. When we need new slings, so Ben can be safely hoisted from his wheelchair to his bed, our local physiotherapist tries to help order them on the NHS system, which is not her job, because otherwise he will spend months being hoisted in slings that are too small.

When Ben grows too big for his wheelchair we will wait up to three months for an appointment to get the wheelchair adjusted because there aren’t enough wheelchair therapists. When Ben needs a new walker, which everyone agrees is useful to help him bear weight and reduce the risk of hip surgery in future, we will need to fund it ourselves. Same with the positioning system he needs to sleep. There is not enough money for these vital aids.

The NHS and local authority therapy teams are full of talented, kind people working really hard in difficult circumstances with reduced budgets. Our local social services team cannot prioritise families like ours because they don’t have enough money to go round.

This is nothing to do with Cameron’s grief, which is personal and painful and not my business, but everything to do with his experience of looking after a disabled child. I find it hard to understand how he can recognise the importance of the care and support his son and his family received without acknowledging that those resources are no longer available. There are now children who don’t have specialist chairs to sit in at nursery because they are no longer funded, families that get no respite and need to fundraise for physiotherapy. Very few families are being proactively offered help from social services. For most people, the personal is political and few things alter your politics more than having a disabled child. Cameron appears to have separated the two things entirely.

Don’t feel sorry for me. We are privileged to have the resources to mostly get Ben what he needs and this isn’t about an individual. But please, feel really bloody angry on behalf of all the disabled children who were born after David Cameron’s son. Cameron was in a position of power and he ensured that all of the families with disabled children that came after his got less.

What to expect from grown-ups

I recently took Ben to a new place, for a new thing, which involved us swimming in a pool. It was a brilliant morning – the kind of pinch-me event that makes me so grateful that Ben has these opportunities, that I get to do this stuff with him.

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But accompanying the #blessed vibe, there was the cold, hard reality of needing to get Ben and me into our swimming costumes. We were at an unfamiliar school and there was a teaching assistant on hand to help get Ben and another child ready. As I got Ben onto the changing plinth, she said she would get Ben undressed while I got changed. This seemed sensible since I couldn’t really get naked in room full of strangers, so I left her to take Ben’s jumper and tshirt off while I popped next door. When I came back, I took over and continued to undress Ben. As I was putting some of his clothing in our bag, she started to undress Ben’s bottom half. I said I would do it but as I did, she continued to help. I repeated that I could do it.

She was being helpful. But it felt uncomfortable. I was there and happy to do all of it. We didn’t need help. Ben didn’t know her, and there is an intimacy to undressing which feels odd with someone who he has just met, who he had been cursorily introduced to, and who he is now expected to be on intimate, but unequal, terms.

Ben will always require assistance, he will need people (mostly able-bodied) to help him access the world. There is likely to be an imbalance in power and a dynamic in these relationships where Ben is more dependent, and this be interpreted as weakness. The solution isn’t for me or James to do everything for him, and for us to reduce his dependence on other people by increasing his dependence on us as parents. I am thinking about how to frame these interactions in an age-appropriate way – all children are dependent on adults in some way, but for Ben that means help to be changed and fed as well as taught and entertained.

Some of this is basic – it’s reasonable for Ben to expect people to introduce themselves and explain or ask him about what’s going to happen next before they start to undress him. Some of it is more nuanced. There are people whom Ben immediately likes and trusts, but we can’t expect that this magical energy will materialise in every interaction. Maybe sometimes Ben’s immediate need to be changed, fed, moved or assisted overrides his lack of immediate warmth to the person doing the changing, feeding or moving. Children don’t get to choose all of the adults who they interact with, but I think they should have a sense of what is okay and what is not, and should always feel safe and respected.

Last year we had a carer at home who was mainly assisting and entertaining Ben with us at the weekend. We weren’t convinced she was hugely enriching Ben’s life but with a full family life including two other kids, she helped ensure Ben had what he needed and was read some books. I felt guilty that he was spending time with her (albeit only a few hours), but that’s the bread and butter of being a mother to three kids.

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One afternoon I went upstairs to see how Ben was getting on and as I walked into his room she was hoisting him out of his chair in a way that was wrong, despite having been shown how we do this to make sure Ben is safe and comfortable. I then realised that she hadn’t moved him all afternoon and he was wet and uncomfortable from being in the same chair for hours. I was shocked and explained to her why all of this was unacceptable in front of Ben before asking her to leave the room and having a further chat with her on our landing. I felt protective, like a lioness who needed to corral her cubs and keep them close forever, and I asked her to leave. I bathed Ben carefully and put him in dry, clean clothes and we all watched TV together.

I had reacted in the moment. We generally try to have conversations with Ben’s carers away from the children as we don’t want our house to be a constant management exercise witnessed by them, and they need to have relationships with the carers we employ independently of us. But as I calmed down, I thought it was totally fine for Ben to have witnessed my shock and to know that I thought it was unacceptable.

It is not right for Ben to feel unsafe in his own house. It is not okay for him to be dependent on others for his personal care and for those people to not give it the thought and attention that they should. He shouldn’t have to put up with mediocre communication and monosyllabic conversation. He needs to be able to trust people with intimate moments of access.

I think it’s appropriate for him to see us calling out moments where people do this wrong. We need to make explicit what our expectations are, and to hopefully build in him a sense of what he can expect from adults, how much he has to put up with and when he’s allowed to protest. Later that night Molly, then age two, asked what the carer had done that was ‘naughty’ because she had heard my conversation with her on the landing and had (correctly) interpreted it as a telling off. I told her that the carer had done something wrong to Ben and she had gone home.

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As I put Ben to bed, I explained that it wasn’t okay for the carer to have moved him in a way that was risky, to have left him in his wheelchair for so long. I don’t know for sure how much of this he understood, but I hope Ben – and Max and Molly – know that he has a right to feel safe and comfortable, and grown-ups aren’t always right.

All that really matters

When I write this blog, I hope that it is read by people who may find themselves saying things to me like ‘I could never do what you do’, or ‘I’m so sorry’ with their head tilted slightly to the side and a tone of pity in their voice. When I tell people I have a beautiful, thriving son who is eight years old and is also disabled, I don’t want people to react with pity or sadness because it is unnecessary and ignorant. And with those people in mind I write blog posts about triking! And fun playschemes! And ziplining! I write about why we are lucky, and why wheelchairs are enabling (not disabling). I have a feeling that negative portrayals about disability are so ubiquitous that I’ll try and write about disabled children who are well, having fun, happy.

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Then suddenly I realised that maybe I have become some version of all those irritating people on social media who have apparently perfect lives, whose children are never dirty and always engaged in constructive activities. Perhaps I am one of the people that I would unfollow because there’s only so many pictures of Mediterranean holidays and accomplished crafting in tidy houses I can take before feeling a bit shit that my kids are all currently watching Kids YouTube in mismatched clothes surrounded by junk.

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What ends up on the internet isn’t an accurate portrayal of everything going on in a person’s life, and I don’t believe it has to be. But as a species we inevitably compare ourselves to others and I would hate other parents of disabled children to think they are doing badly because they are looking at me with my family and our apparently nonstop wholesome adventures.

All of the adventures we do have are facilitated by me having an enthusiastic husband, a hugely supportive extended family, and a lot of paid help. For all my hatred of the pity faces, and even with all these people helping us, there are aspects of our lives which are tough. We have too many children with differing needs. Ben has specific needs and access requirements and that means we can’t do everything we would like to as a family. Our family is like an oil tanker that takes a long time to get going and has a huge turning circle. We need to be shovelling coal daily (though presumably that isn’t how oil tankers are fuelled these days) to keep the show on the road. The days that have been successes have been carefully organised and James and I will have been put considerable work in for the kids (and us!) to get fun out.

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The majority of days aren’t special days, they are bog standard normal days when the boys are at school, then at home and everyone needs to be fed and cleaned. We have just had two months of not having anyone to help me in the daytime on weekdays and I have to set my expectations accordingly. A good afternoon/evening is one in which I haven’t shouted that much, when the kids haven’t watched TV from the moment they got in the house to the moment they go to bed, when everyone has had some of the food they should and not too much of the food they shouldn’t.

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Some weekends we are taking Ben to a planetarium or an outdoor education centre, other weekends when we have no help and we are tired or have things to do, Ben might watch hours of TV. He’s happy, and he’s learning almost nothing from the second hour of Strictly Come Dancing but we’re enjoying a family chuckle at Bruno. We can go a whole weekend with no physio, ignoring the standing frame, forgetting to practice with the electric wheelchair, not having time to get the trike out, and Ben watching up to four films.

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I’m not particularly proud of those weekends, but I really resent the idea that parents of disabled children are held to a higher standard (by professionals, by themselves) because they have to work that much harder to support their child’s development. And I hate the idea (which I am 100% guilty of) that we look at other parents and feel crap because we’re not teaching our kids phonics, stretching their hamstrings and working on their fine motor skills all the time, every day.

It should be enough to spend time just keeping our kids alive and happy, enjoying their company, or getting done the stuff (and man, there is always a mountain of stuff) that we need to. The bureaucratic load of having a disabled child is tedious but ever present. It takes extra time to feed, bathe and change a child who can’t help with these things. There are extra pressures, more appointments, difficult conversations with professionals. All of this takes physical and mental energy. There is little benefit to a child of doing all the physio someone recommended but having a mother who is losing her mind.

Sometimes you have to just batten down the hatches, recognise your capacity at that point, and accept that you’re doing your best right now. If someone asks how Ben is and I can reply ‘fine’, then we’re doing well. So your kid hasn’t done their exercises, but you’ll probably never know if they would have made any difference, and meanwhile they are clean, fed, apparently happy (or not actively unhappy) and, most of all, loved. You might even have read them a book. That’s all that really matters.

New wheelchair

IMG_4188There are certain milestones along this journey of being a parent of a disabled child which are inevitable. Some are actually the omission of milestones: the missing of typical developmental steps, the absence of a first spoken word, there never – in our case – being a first step. Others are very much present: the diagnosis of impairment, the first feeding tube, the first operation.

One of the big ones is the first wheelchair. It’s possible to keep a baby, and then a ‘toddler’, in a buggy for a long time. At some point it becomes clear that the buggy is insufficient and some kind of wheelchair (or the compromise, a ‘Supportive Buggy’ is necessary). This will be for lots of good reasons to do with postural support. It is entirely possible to be convinced by the need for the wheelchair and sad about the arrival of it simultaneously.

Ben had his first wheelchair (more of a supportive buggy) when he was two. It was needed – he didn’t look at all comfortable in the buggy we had for him, and it was showing the strain of near continuous use. So we went for a fitting and a few months later it arrived. We heaved it up the steps to our house.

I wasn’t in love with it, but I could see the advantages. He sat well in it. It folded, so just as with his previous buggy we could lift Ben into his car seat and put the wheelchair in the boot. The slight difference was that doing so injured us almost every time.

Since Ben was still young he often slept in the buggy, and he was sensitive to bright sun, so we asked about a hood and rain cover for the wheelchair (as is standard with  a buggy). It turned out that as these were not ‘essential’, they would not be provided by wheelchair services, but we could choose to buy them ourselves. They arrived just after Max was born and I remember fitting them while James held tiny Max. They worked, but were incredibly clunky and would need to be removed every time we put the wheelchair in the car. They looked like something someone had made in their garage and were as far removed from the slick design of a buggy as you can imagine. I was really cross and after crying for a bit I wrote an extremely grumpy letter to the manufacturers which James had to tone down so that it was only quite cross. We sent them back and found our own solution. I have written before about the way things look here

Since then Ben has had two more wheelchairs, each a bit more ‘wheelchairy’ than the last. Over the last six years we have adapted our house and bought a “Wheelchair Accessible Vehicle” (a car with an in-built ramp, blog about it here) so we have fully accommodated the wheelchair into our lives. I see the wheelchair as an enabler for Ben, and we make do with hats and ponchos so there are no resentful conversations with suppliers of wheelchair hoods.

But what I still struggle with is the particulars of each wheelchair. Ben’s wheelchairs are supplied by our local service which is staffed by great people but, like all NHS behemoths, can be a bit inflexible.

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When we first discussed the possibility of Ben needing a bigger chair last year they showed me the type of chair they thought would be most suitable. Even allowing for the fact that it wasn’t the colour we would pick, and wasn’t set up for him, the chair I saw was really ugly. The base looked to me as though someone had rustled it up out of some spare scaffolding poles. I could see it was practical, and I was told that it was one of the most reliable chairs, but it was winning no prizes for elegant design. The seat was covered in weird synthetic fabric that had a clichéd care home vibe. It was enormous compared to his current wheelchair, and relied on a ‘knee block’ (literally a shaped block, fitted around the knees) to keep Ben in the right position, which he had never had before.

I knew Ben would need a new chair soon, and I respect the opinion of an Occupational Therapist who knew about seating for disabled people. But this was a chair that Ben would use every day, sometimes for 12 hours a day. We would see it every day – in our house, in our car, in family photos. In what other sphere of your life would you think about acquiring something like this and accept the first thing offered to you which happens to be the one in stock? Do people buy cars they hate the look of? Do people get dining chairs that they’re not sure they’re going to find comfortable? There is a huge market for buggies which people spend thousands on and have the kind of designers who formerly worked on Formula One cars.

Of course it would be replaced if Ben wasn’t happy and comfortable, but I really hate the clunkiness of wheelchair design. I resent spending a lot of time incorporating Ben’s needs into the design of our home which – if I do say so myself and may possibly have pointed out before – is beautiful AND fully accessible, only to have it cluttered up with something that may be technically good but is aesthetically shit. It’s unfair to have options for large purchases in every other aspect of our lives, but not this.

The wheelchair service was patient, told me to have a think about it, have a look at other options privately (while recounting some horror stories of chairs breaking and families having to arrange fixes themselves…). Meanwhile, Ben kept growing. An engineer came to adjust the eyegaze mount on the wheelchair and we had another conversation about the chair – we all knew his current chair wasn’t quite heavy enough to support the device, and that a bigger chair would be better. After listening to my monologue about scaffolding poles she mentioned that the base came in different colours. She emailed me later to say it definitely came in black.

And so, slowly, I came round to the idea. The seat fabric could also come in black which made it look a bit less healthcare setting. We eventually ordered the new chair, and it arrived last month. Ben very patiently sat through adjustments and we brought it home with us.

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You know when you are away from your kids for a few days and when you are reunited it’s like you are seeing them anew. You notice the size and the feel of them with a jolt – both familiar and novel. It was like that with Ben in the new chair – it was Ben in a wheelchair, which is our daily experience, but he looked taller and older and relaxed. It made me feel like I must have been squeezing him into a ridiculously small chair before, like we hadn’t noticed that he was now eight. Pushing the new chair is like a dream – no weird knobbly bits on the handle, much less veering unpredictably into gutters. It comes with a tray which is a perk. There’s even just enough room on the side bar for Molly to hitch a lift (don’t tell wheelchair services…)

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There’s of course a little hint of melancholy – it’s wider, it will be a bit harder to squeeze into small spaces. We won’t be able to carry him and it upstairs to friends’ first floor flats like we have done recently. These are sadnesses relating largely to physical barriers, not to Ben’s need for a wheelchair.

Ben’s not hugely keen on the kneeblock so we’re taking that slowly (not as unkeen as we originally thought though – turns out his shoes were too small and we hadn’t noticed which was making him understandably grumpy). It’s all come good in the end. Bring on the adventures.

P.S. If you would like to be notified when I post a new blog, you can subscribe by putting your email address into the box on the right of the screen. You’ll be sent an email each time I post.

Lucky

IMG_9945I’m trying to institute a new tradition in our house: on each of the children’s birthdays we will all get up and do birthday breakfast, open presents and be generally celebratory, and then I will go back to bed for at least an hour. I think it is a good idea for all of us to remember that this is the anniversary of these kids coming out of my body and that body could do with a little lie down.

Molly’s birthday a few weeks ago was the first time I implemented this brilliant new tradition, and as I was lying down remembering her birth two years ago, I read an article by Chitra Ramaswarmy about her tendency to catastrophise. It was poignant to be reading about how incubating and then having children affects your outlook on life, particularly if one of your children is diagnosed with a disability.

Ramaswarmy experienced a very tough year in which numerous difficult things happened. By its end she had – after a complicated pregnancy – given birth to a healthy baby, her partner and mother had been seriously ill and recovered, and her son had been diagnosed with autism. Was it a year of disaster or, actually, was her family lucky?

Ramaswarmy describes how she is naturally a catastrophist, and inclined to be anxious about the potential for the worst case scenario to occur. She makes the case that the parenting is an antidote to catastrophising:

‘The hard graft and small, pure joys of looking after a baby and a little boy with autism anchor me to the present. The baby keeps me healthy, makes me feel lucky and gives me a constant dose of perspective. She is also exhausting: I am too tired and busy to catastrophise with as much fervour as the habit demands.’

This rings true for me. I am not a catastrophist. My natural tendency is towards slightly anxious optimism. But there is no doubt that I thrive when I am rooted in the present, and nothing keeps you in the present like having a small child, and then another, and then another. It’s not all rose-tinted snuggles – Ben’s early months were difficult for us all and he was frequently made miserable by reflux and feeding difficulties. But my focus on looking after him meant that by the time I looked up and around we had largely weathered the storm.

I went on to have two more babies and, luckily for all of us (and I mean luck, because these things are just a roll of the dice), Max and Molly were babies that were easy to please. I have been largely too busy caring for all of them over the last eight years to spend much time thinking about what might have been, or what might go wrong.

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What really resonated with me was Ramaswarmy’s reaction to her son’s autism diagnosis:

Then there is my brilliantly singular, loving and brave son. Before he was diagnosed with autism (that happened this year, too) I feared this moment: how will we manage? What will we do about school? How will he develop? Is everything going to be OK? The mystery and idiosyncrasy of autism can be frustrating, but it is also a visceral reminder that none of us knows what lies ahead and that compassion is the most powerful weapon against anxiety. So, here I am, living and thriving in the future over which I once catastrophised. And you know what? It is not so scary after all.’

We have had Ben’s birth described as a catastrophe, and in purely medical terms that may be true. But it has not been a catastrophe for our family. Sure there are difficult times, and complications, and we are sometimes sad and frustrated, but there is no catastrophe here. Something that was unfamiliar and therefore terrifying has become normal to us, and with familiarity comes an ease (hugely helped by the privilege of having carers to help and living in an adapted house).

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Over Christmas, all the kids were largely at home every day for two weeks, something that is rare, which meant they spent more time together than usual. Molly can now talk and asked about, or talked about, Ben at least every hour. Ben happily tolerated her climbing on his wheelchair, wiping his face, pressing her cheek into his. Max is currently obsessed with gags about bodily functions and Ben encouraged him by laughing at his poo jokes. Ben let Max play with all of his Christmas presents. Molly clambered on Max and ruined his games and he only snapped after such goading that any jury would be on his side. Ben and Max watched Star Wars for the first time and were scared and excited by the same bits. We went ice skating, for walks, swimming and to the cinema.

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The ‘mystery and idiosyncrasy’ of cerebral palsy can be difficult, but it is also a prompt to live this life that is happening right now, even if it is one that would have counted as a bad outcome at some point. We have three healthy kids, and it’s not so scary after all. Are our family the survivors of a disaster, or are we lucky? Perhaps ask me again when they’re all teenagers, but on the basis of this Christmas we’re extraordinarily lucky.

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The privilege of touch

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

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

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

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

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

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

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

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

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

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Choosing what kind of mother to be

Note: This is more about me than Ben – 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 Ben 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 Ben has had in the previous year to produce our very own stats which show that in 2016 Ben 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 Ben’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 Ben 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 Ben sees are in theory talking to each other, the reality is that Ben 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 Max 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, Ben’s got another appointment to get to…

Looking for Alice

I love art and have, for a long time, spent as much of my time as possible visiting galleries, looking at sculpture, paintings, photographs. These days I am as likely to use my Tate membership to take a small child to the members café as I am to appreciate an exhibition, but recently I discovered a new (to me) photographer. I had that thrill of connecting with her pictures in a way that made me feel like today had been a good day, that the time I had spent looking at those pictures had improved the quality of my life.

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That photographer is Sian Davey and the book I discovered is ‘Looking for Alice’, a collection of photographs of her daughter. Alice was born with Down’s Syndrome and Davey’s project has been to photograph her daughter as she accommodated the shock of a baby who was different to her other children, and fell in love. Alice is the same age as Ben.

These photographs are beautiful. If you knew nothing of the intent of the photographer, did not know that a mother was holding the camera and that the girl was her daughter, you would find them to be stunning images. They are part of a photographic tradition of focussing on the domestic, of examining what is in front of you.

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If, like me, you read Davey’s essay accompanying the photographs, you would hear her voice:

‘This is a story about love and what gets in the way. This concerns all of us, my daughter’s diagnosis is only one aspect of it. The rest is about yours and mine and indeed society’s relationship with ‘difference’ of all kinds – this is what Alice is inviting us to reflect on.’

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I can’t help but believe the personal to be political. I don’t think you can be the mother (or indeed parent) of a child who is ‘different’ and not politicise the way you see the world around you – from the way people are treated, included or not, to the effects of social policy, education and healthcare. I have come to realise that much of the prejudice and problems experienced by disabled children and adults come from fear and ignorance of individuals, society and the state. It is easy to think of some people as different if they look different (or behave differently) to how you perceive a child or adult should look and be. This inevitably leads to thinking it is okay to treat them differently.

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Davey is explicit about the fear and uncertainty she felt after Alice was born, and how these feelings dissipated as her love grew. I can’t believe that anyone could look at the photographs of Alice and not see that she is a girl who, as her mother describes, has the same needs and feelings as any other child. It is also blindingly clear that she is a loved member of her family, not least because one cannot ignore the fond gaze of the camera.

Sometimes I feel like a member of an invisible club – one of parents diligently and quietly learning from their ‘different’, often disabled, children and using their children to try and change the world in ways big and small. It is an unashamedly domestic beginning for a political movement, and I am only one of the latest in a long line of mothers and fathers trying to make the world a better place for their children. Because surely our society is only as good as the way we treat those without advantage and privilege.

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Families are messy, imperfect things, constantly shifting and adapting yet consistent and supportive. For us, and many others, our family is where disability is the norm rather than the exception and is just part of the mix. How wonderful it would be if we felt that was the case beyond our front door.

As Davey writes

‘(Alice) is now in the middle of everything that we do as a family, and is loved unconditionally, as it should be. I can’t help but wonder how it might be for Alice to be always valued everywhere, without distinction, without exception, without a second glance.’

There’s nothing to be afraid of. Alice, and Ben, are just (small) people. There is much to value.