Almost two years ago Ben went on a school trip. He left on Monday morning and returned on Friday afternoon, and we got some messages inbetween but we were otherwise largely oblivious to what he was doing. We knew he would be okay – we trust the school staff, and his usual night carers travelled with him to be there if he woke – but it was still strange. Not because we were away from him – we have often left him with family or carers. But because he was away from us, which is unusual.
There is an expectation of linearity in childhood. Babies are expected to reach developmental milestones and then continue to tick life stages off the list: walking, talking, starting school, being left at other people’s houses, riding a bike, sleepovers, school trips… Through these stages there’s a distancing of the child from their parent – probably not entirely smoothly (my children often pull away from me for a bit and then return close for a while, before pulling away again) but there is a broad direction of travel. They become more independent both physically (Max no longer needs me to tie his shoelaces) and mentally (Molly will take what her teacher has told her to be true over anything I say). If children have siblings there is an expectation that they are like a little chronological train – the first child makes their way along the track and others chug along behind.
For Ben the path is less linear – in some ways he is right on that track, wanting to watch 12 Certificate Marvel movies rather than the more gentle films I encourage, preferring to listen in on adult conversations than be at the bottom of the garden with his brother and sister, and learning from and communicating with teachers, carers and TV programs as much he does as with me and James. But in other ways, particularly physical, Max overtook him a long time ago and there are ways in which Ben will always be dependent on me and James (or other adults) to help him.
Time, and our family’s passage through it, is not progressive in the way that I had expected. I entered into parenting expecting linear development of my children but it won’t be like that. Ben entering his teens will have no effect on his ability to walk away from me, and yet he is becoming more mature and bursting out of his unadjusted wheelchair. The ways in which I am his mother are in some ways completely different to when he was little, and in some ways (feeding, dressing) exactly the same, so being his mother concertinas time in a way that feels, as Ellen Samuels has said, like time travel.
Ellen Samuel’s essay, Six Ways of Looking at Crip Time, talks about the ways in which time shifts or stretches when you are disabled. It’s a brilliant essay that I would recommend reading – an eloquent insight into how disability affects so many aspects of life beyond the solely physical.
From the essay: ‘Crip time is time travel… Some of us contend with the impairments of old age while still young; some of us are treated like children no matter how old we get. The medical language of illness tries to reimpose the linear, speaking in terms of the chronic, the progressive, and the terminal, of relapses and stages. But we who occupy the bodies of crip time know that we are never linear, and we rage silently – or not so silently – at the calm straightforwardness of those who live in the sheltered space of normative time.’
This made me think about the ways that being Ben’s mother doesn’t conform to the linear path I had been told to expect, because he is disabled. Being Ben’s mother is a process of undoing assumptions, and it’s near-constant work because the world tells us that the right way is chronological and cumulative, and that these things indicate progress. At the beginning, having a child who didn’t do things in the order others did was disorientating. It’s not any more.
Ben will lead the way for Max in some ways (he already has a smartphone, as Max reminds me near daily), and in others he won’t. He will go on school trips, but people will still ask us if he goes to school. He will continue to grow and need ever larger clothes, yet sometimes people will speak to him as if he is a baby. The issue isn’t with Ben, it’s with the ways some people struggle to compute his difference. I can get my head around it, and have, but we are continually butting up against other people who are confused by Ben’s developmental time travel, and express it. I can’t know what that feels like for Ben, but it is annoying as his parent.
Reference: Six Ways of Looking at Crip Time by Ellen Samuels, in Disability Visibility: First Person Stories From the Twenty-First Century edited by Alice Wong.
My son, Ben, is 11 and my approach to his disability has changed a lot since he was little. 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 and I would have found it helpful to have read stories of other parents with similar experiences. I am interviewing parents who are raising children who are not typical to discuss their thoughts and lives. This week it is with Emma Gardner.
Could you describe your family?
I have one child – Dotty. She is seven and she is disabled. Her dad and I are divorced although we’re great friends and still very much a team for her. I have a new partner, Adam and he has two children from his previous marriage.
What does Dotty love?
Since she was a baby her favourite thing has been eating. She is so motivated by food. She loves music, and responds to one to one play, in close proximity. She loves thumbing through books. She can’t read but she just loves turning pages and holding books.
How would you describe Dotty to people who don’t know her?
I describe her as disabled. I used to blurt that out nervously when she was younger and people would look at her adaptive pram. But now I confidently use it. I want her to feel proudly disabled and as a wheelchair user it’s more obvious now. Also her condition is complicated – it’s a rare, genetic condition that is fairly tough to explain.
When did you first realise that Dotty might not be a typical baby or child?
She was a very unhappy baby and we were in and out of hospital for the first few months. From around 18 months, we knew she wasn’t hitting the “typical milestones” but we thought she was probably chilling out after such a difficult start. We went to see a neurologist who had wanted to keep an eye on her following her early hospital stays, and we started to realise that she wasn’t doing a lot of things that were “expected”. She was diagnosed with her condition when she was two and a half after lots of tests. We kind of knew there was something going on, but when you get, ‘Here it is, this is exactly what it is, now off you go,’ you’re like, ‘Wow, what actually just happened?!’
The diagnosis wasn’t very clear about what it would mean for Dotty. There’s no pack explaining things. We were just told to speak to our health visitor, continue with the physio, do what we were doing and see how it went. At the time the internet was definitely not helpful, not least because genetic code and neurology are really tough to understand!
Some of the groups I found online took me to some dark places because I couldn’t see what the condition meant long term. I realise that the pre-conditioned views a lot of us have grown up with around disability clouded this period of time and it was easy to get stuck in a negative loop, focussed on what was wrong. But I knew I didn’t want to do that – I just wanted to move forward.
And now that she’s a bit older, how does Dotty’s disability impact her day to day life?
She needs one to one care. She goes to a specialist school and she has the most incredible team there – her teachers, assistants, physios. I love that it’s all now in one place now. Dotty needs help to do most things but she’s a determined soul. She’s really socially engaged and this past year she’s really developed her connection skills and emotional responses which has been wonderful, especially for me to see having spent so much time with her, working from home.
Are there things that you have been struck by being particularly different to what you expected of motherhood?
Motherhood was such a change, but also a magnifier on everything that was going on with me – my mental health, my lifestyle, my relationships, my career. My marriage broke down, I got divorced and everything changed. When it happened I was really worried that Dotty would be seen as the reason for that, or her disability would. But it wasn’t – there was stuff going on there with me before she came along. Having Dotty shone this intense light into a lot of that stuff that I needed to figure out which was pretty tough to manage but I’m thankful now. I’m happier, the people around Dotty are happier and I think ultimately that’s made her happier. I don’t know what I imagined motherhood to be like, but probably nothing like it is. I didn’t imagine unravelling and rebuilding myself for example. I wasn’t prepared for that.
I genuinely thought I was giving birth into a spreadsheet. I was that person, who made lists and assumed I had it all sorted. Arrogantly so.
I know some people get on brilliantly and becoming a mother doesn’t change anything for them, but for me it was hard and it changed everything. It’s still hard at times. But it’s also the best thing that’s ever happened to me, and I wouldn’t change how it’s played out at all. Otherwise I wouldn’t have Dotty or be the person I am now.
Do you think things could have been easier if the people or processes around you had been different?
Definitely. I think that’s still true, although people around you get more used to it. In the beginning, there’s a perception that it’s the worst thing that’s happened to you. So even when you’re getting on, trying to live your life, you’ve still got the pity of other people to manage. Nothing’s easy when you become a parent anyway, but navigating the medical model of disability I found so frustrating, because you’re questioned, it’s hard and there are so many barriers to getting help. I’m lucky enough to have had some incredible support and brilliant people around Dotty since she was a baby. But why isn’t it easier, particularly for people that need more help to access the support they have a right to?
Access (or lack thereof) to places and products can change where we go on a weekend and where we can hang out, particularly now that Dotty’s older. That frustrates me because it’s not really anything to do with Dotty or her needs. It’s the fact that there often isn’t any accommodation or thought for people like Dotty. Those are the things I try to challenge myself, but that can be exhausting and I have to pick my battles.
What do you wish you had to spend less time explaining or that people knew about your family?
I suppose it’s that we’re not sad. We really do believe that this is okay. When I say I wouldn’t change Dotty, I mean it. I’m not just saying it because I can’t. That can be a very polarising view, depending on who you are. For me, yes, things are different, but she’s ultimately the greatest kid. I don’t really want people to look at us as sad or even inspiring but instead as a great example of living with disability, living a happy, colourful life. I’ve found a huge passion in trying to find ways to help people see that, to try and find ways to showcase that to parents particularly…and anyone really.
What do you think helped you come to that view?
When Dotty was younger, I buried myself in work. My ex-husband stayed home with Dotty and I was quite detached. But I was processing by bringing disability into conversations in my workplace. Through that process I read a lot and met and made friends with disabled people, and that naturally changed my mind and educated me. I met disabled people who were unapologetically themselves, talented, wickedly funny, creative and innovative. That really helped me to understand that negativity comes from society’s view of disability which often isn’t the reality. Like the rest of us, disabled people are all different, and a lot of the time just trying to get on with their lives. I’m hyper aware that Dotty can’t tell me her views yet and may not be able to. As her mother and carer, I know her and we communicate in our own way. Outside of that, I take in as much information and perspectives as possible to make the best decisions for her. But, just because I know what the social model of disability is, doesn’t mean I’m done. You’ve always got to keep learning.
Did having a disabled child change your view of the world?
Yes, definitely. It’s been transformational for me. It has broadened my perspective and everything we’ve been through has made me so much more confident.
Now, I want things to be better for Dotty and people like her and I understand how to make that happen. it’s ignited something in me. I feel like I can talk about it and help people, particularly parents, get there more quickly. I just feel so different, and that’s because my whole life has changed in the last couple of years and having a disabled child has been an integral part of that.
I still have my moments. I’m nonstop, don’t sleep enough and I struggle with anxiety, but none of those things are because of Dotty’s disability. They’re more likely to be related to other people’s views of it or of us. Or not related at all and just part of the way I’m wired.
How have you found being a working parent with a disabled child?
When I had Dotty, I was on the board of the agency and had worked there a long time so, for the most part, I was able to carve out the flexibility I needed. Looking back, I was definitely in ‘work comes first’ mode for a long time, which was happening because I was unhappy and hadn’t worked through a lot of the things I have now.
Now I’ve set up my own business and have total control over how that works for Dotty & I. I think the pandemic made me realise that I don’t want to go back to the amount of time I was spending in an office, my priorities changed again and I’ve developed much stronger boundaries.
I would say that working is really tough, depending on the level of care you’ve got, pandemic or not. But I’ve always been somebody that likes to work and I’m excited about what I’m doing again. I think that’s ultimately how I’m going to make it work. It feels like Dotty’s part of it, if that makes sense?
I think there can be a lot of pressure on mothers of disabled child that they should be giving everything to their children. Have you felt the pressure to not work?
It’s something I struggled with a lot before I started my own business and I felt guilty about not giving up work to care full time for Dotty. But ultimately, I know myself. I know that I’ll be no good to Dotty if I don’t also do the things that I need to make me happy. That took me, is still taking me, some time to be at peace with. But I stand by it, and that guilt feeds the attitude that assumes the disabled child, and disability, are tragic and something to pity, and that the mum has to be there by the kid’s side 24/7. Actually Dotty loves school. I love her going to school. I need her to go to school. There’s a place for all of it – people do what they need to do for their situation. I’m privileged that I was able to start my own business and managing both is working for us right now. Everyone’s situation is very individual and that’s ok.
If you’d like to know more about the Medical and Social Models of Disability that Emma refers to there is more information here.
My son, Ben, is 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 interviewing parents who are raising children who are not typical to discuss parenting, language and expectations. This week it is with Rachel Wright, who kindly met with me (virtually) to answer some questions.
Could you describe your family?
I’m a cliché. I married the boyfriend that I got together with at 17. It gets worse though, because he’s a doctor and I’m a nurse. We have three sons: S is 15, J is 13 and E is five.
How would you describe your eldest son?
He is a boy that laughs from the tips of his toes to the top of his head – he has the dirtiest laugh on the planet. He loves Pointless and could happily watch five episodes in a row. He loves swimming and music, making disco showers the best time of the day. He sings very loudly and if you’re not attuned to his kind of singing, it may sound like he’s complaining. To those of us close to him, it looks and sounds very different. He enjoys an eclectic range of music from Romeo and Juliet to Chemical Brothers, and some cheesy Christian kids music he’s been subjected to since he was born.
If a doctor asked me what the matter with S, I’d say he has quadriplegic cerebral palsy, is registered blind, PEG (gastrostomy) fed, has microcephaly and very complex health needs. He needs 24 hour, seven days a week care.
I describe him has disabled, or as having complex needs, or I talk about his life-limiting epilepsy. I recognise that I’m not disabled so the terms and language used are not for me to own necessarily, but I am not ashamed of his cerebral palsy and disability any more than his blue eyes and brown hair. I’m not going to attach any level of shame because I value vulnerability. I am convinced that our fragility isn’t something which needs fixing rather our weaknesses are at the heart of where connection and purpose is born.
When did you realise that S was going to be disabled, or that he wasn’t going to be a typical child?
As soon as he was born, he didn’t breathe and was ventilated. We were given percentages at that point of his chances of having a disability. We carried hope with us until clarity came at ten weeks old when we had an MRI scan that showed every part of his brain was affected. We went into that hospital with the hopes of minimal or no impact, and walked out with the reality of a very severely disabled child.
How does S’s disability affect his, and your, life day to day?
S likes things the way he likes them. I guess partly because of learning disability and partly blindness. He’s most comfortable when his world is structured and he knows what’s happening. Obviously he still surprises us in a positive way but there is also no hour where there isn’t something that needs doing, whether that’s his milk, meds, or repositioning. That continues through the night. It’s been 15 years of day and night care, which impacts our lives.
I find it really hard to express the relentlessness of that without feeling guilt over betraying one of my biggest loves. I don’t know how to explain how hard it is without implying a level of not loving enough. What I try to remind myself is love doesn’t give me more hands, more hours, or more emotional strength. As a nurse, I got lunch breaks and to go home and sleep. As parents we might have to do the night and then still take the kids to school in the morning, before going to work and then caring the rest of the day. I think it’s really hard to look after your emotional self with the constant logistics of caring for a child with such complex needs – the 80+ people that we have to communicate with, the necessary tasks. With our other kids, I can take a break, say ‘let’s just get pizza’. But I can’t be like ‘let’s just not draw the meds up tonight’. There isn’t that option.
It can feel like there’s no margin in the day, and there’s so little permission to not do things. The emotional drain of that can make you feel like you’re failing the whole time. You get to the end of the day and you can just see the five things that you didn’t do, even if you actually did twelve other things.
In what ways do you think being a parent has turned out how you expected it to? Are there things that are particularly different or, or things that ended up being the same?
I had expected to be parenting somewhere else in the world, maybe South America or Africa. I was going to deliberately choose my life to be different, where we would be doing medicine in other countries. I guess I expected to have complexity, but I thought it would be completely different. When S came along it threw our plans of working abroad out the window because we needed to be near lots of support. We’ve now been living in our house for nearly 11 years, and that’s the longest I’ve ever lived anywhere my whole life.
Another way it’s different is our capacity to be outside. My husband loves camping and we will camp all year round, but it’s difficult to be spontaneous, to have that ability to travel. S can’t camp when it’s cold and we need five hours of near military operation to simply leave the house. There is so much kit we must remember or practical aspects to consider. We do try to take it in turns to travel alone or without S each year.
The way it is similar is the way that we approach things. I guess S expedited our mid-life crisis. We are focused and very value based. We continue to struggle with an evolving faith.
How do you think being S’s parent has affected how you parent your other children?
I think parenting brings out the best and worst in you. It amplifies aspects of your personality. We were both pretty laid back. When we got pregnant a second time, S was nine months old and wasn’t rolling or grasping, but by the time our next son was born we were in and out of hospital with S’s epilepsy and feeding complications. It was a massive change. I think our parenting was all up for grabs, because it was so disorientating.
That definitely meant when J loved food, he had whatever he liked! I loved how excited he was about ice cream. When he was fussy and didn’t want to eat I knew he wasn’t actually going to starve, so I didn’t worry about it.
Until J was eight years old (when E came along) he had lived his whole life as the second child, just having to muck in because the world didn’t revolve around him. But we also had to try everything out on him because we hadn’t done it before. He was doing things for the first time, but without the undivided attention of being an eldest child.
I worry sometimes that because of S’s complex needs, I didn’t support J to the extent that I could have done. The way J progressed just blew my mind but maybe I would have been more on the ball if I hadn’t had such a skewed perspective. Meanwhile Ethan, as the youngest, just runs rings around all of us.
Are there ways in which being a parent has changed you over the last 15 years?
Yes – completely, and not at all! I think I really lost myself for the first few years, under layers of guilt, expectations on myself, perceived expectations of what other people thought of me. Having S threw everything up in the air, and we had to piece things back together.
I’ve become a lot more feminist. I have a husband who is proactive at home he easily takes care of children and home when I’m not there but the logistics are all still down to me, partly because it’s not realistic to split responsibility for that.
At the start of the pandemic, in March/April last year, I had a massive meltdown because all the emotions I had when I first became a parent were exposed again. Everyone else was making decisions for me. Everything I had worked towards disappeared and there was nothing I could do about it. I was so consumed by the jobs that had to be done minute-to-minute that I couldn’t see how to carve anything out for myself. But also, the layer on top of that was that it would be so different if I had been a man. If the expectation hadn’t been that I was the person who was going to stay at home. My husband earns a lot more money than me, my position as a nurse would always play second fiddle to his role as a GP because I earnt less and couldn’t support our family with my wage. But that feeling of loss, that the last 15 years of not working has impacted my ability to do things now, is something I’m processing.
It feels like when we were clapping keyworkers last year we’d realised the things that made a difference were people that put food on the shelves, who were looking after the vulnerable. But that narrative was sadly still founded on pity rather than value based. We continue to do that with Children in Need and Comic Relief. We portray families like ours with a big violin and a greyed out scene, and then they get a therapy or opportunity and the sun comes out, faces start smiling and…isn’t it lovely. People are quite happy to give a couple of pounds to that. It makes us feel better and distracts us from the need to value and fund the infrastructure within society needed, or recognise our gender-specific values.
The reason things like EHCPs (Education, Health & Care Plans) and IEPs (Individual Education Plans) fail is because we take these things, which rely on collaboration, and plonk them into a patriarchal system that relies on an ideology of productivity, that is financially driven. They don’t look at how this affects people – how much they feel valued, or whether they’re failing because they’re not in a system that can support them. Then when the plans do fail, they say ‘Oh, look, we tried to be collaborative but it didn’t work’.
I think as a parent I’ve got an incredible capacity for guilt. With my five year old, if I don’t sit and read to him he might not be a great reader, but he’s going to learn to read. With S there’s this feeling that it’s down to me. It partly comes from the number of practitioners who are telling me, ‘Just do 10 minutes of this. It’s really vital.’ So vital that they’re not going to do it for us, I have to do it and they’ll see us in six-month’s time. Imagine if practitioners sat down together and decided with families what the priorities are, because parents can’t do it all. This should be about a person’s life and all the people around them taking some of the responsibility.
I’ve always been a challenger and agitator but I get consumed by the emotions of having to fight battles on behalf of my son. I didn’t want people to feel sorry for me, I want to live in a society which values S and our family. I want part but not all of my identity to be tied up in being a parent. Slowly I’m finding who I am again. I love that Brene Brown quote: ‘When we deny our story, it defines us. When we step into our story, we get to write a brave new ending.’ I was so geared up for a different story that I lost who I was, and it was only when I started stepping more fully into my story that I began to be able to make proactive choices which feel more like thriving than simply surviving.
My son, Ben, is 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 interviewing parents who are raising children who are not typical to discuss parenting, language and expectations. This week it is with Penny Wincer, who managed to fit in a call with me to answer some questions.
Could you describe your family?
I’ve got two children. Arthur is 11 and Agnes is eight, almost nine. We live in South London though I’m originally from Australia and I’m a single parent, though I have a boyfriend who doesn’t live with us.
How would you describe Arthur?
Arthur is autistic and he has learning difficulties. He can speak but his speech is not typical. He’s a really happy kid but when he’s not really happy, he’s quite unhappy. There’s quite a roller coaster of emotions, which are quite extreme, so it’s never boring!
What does Arthur love doing?
He loves anything really stimulating like fireworks, trampolines, funfairs and bright lights. He loves sand, the beach, water and waves. I gave him some helium balloons this morning and they make him so happy. He also really likes cuddles, wrestling, hide and seek and chasing.
When did you realise that Arthur was maybe different to other children that you knew, or to typical children?
At around 18 months old it became obvious that he wasn’t quite in the same place as his peers. I wasn’t concerned at first, but he started having really serious meltdowns which seemed more intense than other kids. He was always happy or sad and there wasn’t much inbetween.
When he was around two my daughter was born and he reacted really badly. He either ignored her or got really upset when she made a noise. That was when I thought there’s something different here. I spoke to the health visitor at first and because I wasn’t that concerned, she wasn’t either. Arthur’s eye contact with me was really good and I hadn’t realised that he’d stopped doing many of the things he’d done when he was younger like turning round when someone unfamiliar called his name.
I asked for a referral and did a lot of research. In the first appointment with a developmental paediatrician, when Arthur had just turned three, she asked us what we thought and Arthur’s dad and I both said, ‘we think he’s autistic’. She said it was too early to confirm, but agreed it was likely to be the diagnosis eventually. We were expecting it so we weren’t shocked, or even that upset, when it happened.
We were first time parents so we didn’t have other children to compare him to, but seeing the developmental reports in black and white was really hard. I’d had no concerns about Arthur in his first year but I can look back and see he was a bit different. By six to nine months old, Agnes was doing things that Arthur couldn’t do, like waving, and it was a real shock.
When he was diagnosed we thought we’d get some help but really nothing was forthcoming and that was disappointing. We had to start the long process of a statement of special educational need (now Education, Health and Care Plan) when he was three and a half, and he then went to a mainstream school with one-to-one support. He did three years there which he didn’t hate it but he wasn’t thriving. He needed specialist teachers and a low stimulation environment, so he then moved to a specialist school and it is absolutely amazing. I feel so much more supported as a parent.
Can you talk a little bit about how Arthur’s disability, if you would use the word disability, affects his day to day life, and your family?
I do refer to his disability unless I need to describe his needs specifically, and then I might say autistic. Sometimes I prefer ‘disabled’ because not everyone needs to know his needs all the time. Sometimes they just need to know he has accessibility needs. I don’t shy away from the word ‘disabled’ because I want my son to be comfortable with it, and I want the people around him to be comfortable with it. It’s a fact.
Arthur is incredibly rigid and struggles to process information if things are not the same all the time. That means that we have really fixed ways of doing things and if there are any changes it can be quite traumatic (and I don’t use that word lightly). Now he can use language he becomes fixated on and repeats things. He’s generally an anxious child and he finds the world quite scary, and that means him repetitively asking to do the same thing over and over again, to hear the same answer and to understand. Keeping him in routine is really important because then he’s less anxious and more able to engage in the world a bit. He needs a lot of sensory stimulation – lots of physical activity, jumping, wrestling, running. If he gets enough of that, then he’s calmer.
He can use concrete language, so he can point things out to me and ask for some things. But he can’t really use abstract language to tell me how he feels or about something that happened previously or in the future. The way he uses speech is not typical but it’s improving all the time. Speaking is so useful for him but people don’t understand that it doesn’t make him less autistic. It’s still really hard for him to get his needs across. He’s started echolalic speech, so copying things, especially from TV. He’ll be just scripting to himself and he’ll say what seems like nonsense to everybody else over and over again, but then he’ll learn to use it in context. The first time he called me Mama was when he was about four and a half and he learned it from the film of The Gruffalo.
He doesn’t have friends in the typical sense but he connects really well with other adults and is a very good judge of character. When he was really little that concerned me but now I know he can connect with adults and he will be an adult, so he will have friends who are peers eventually.
In what ways is your life how you expected? And in what ways is it different?
It’s so different to how I expected. One of the biggest things is that I’m Australian and Arthur can’t fly so he hasn’t been to Australia since he was one. It’s been a really big deal that I’ve had to get my head around. I go on my own, occasionally, and I will take my daughter eventually, but it’s complicated. It would be wonderful if the kids could know their extended family.
I never expected I would be in a situation where I’m so reliant on the outside world and how precarious that feels. For example, I’m dependent on the local authority for Arthur’s school, transport to school, holiday club, and that dictates how and when I can work. I never expected that my choices would be restricted like that. At any moment, something can change (particularly in the last nine months) and I’ll have to completely reshuffle my life to replace whatever has gone or changed. It’s one of the things that I find most challenging. It’s quite hard to explain to people the lack of control and the lack of options that I have with a disabled child.
I think the difference between being a parent of a typical kid and being a parent of a child with a disability is it’s not better or worse, but we might need more – more rest, more breaks, more help. It’s all fine and manageable when I get the extra help I need and the extra rest I need. I don’t wish it away. It’s just different. But when you have all that taken away, suddenly you realise just how quickly you’re hanging by a thread. I need help and rest to be a together human, a good parent, friend or girlfriend. I think that’s true for everybody, I just think it’s a bit more extreme for those of us with kids who need a bit more from us.
But I think it’s as good as I expected it would be. It’s also way more challenging than I expected, but I think most parents would say that. Parenting is more emotionally extreme than I expected. I thought it would be a bit more calm and stable. I’ve coped with way more than I thought I would. I have a life that I love. I have moments where I’m definitely not coping, especially this year, but generally I have a really lovely life.
How has your parenting and your approach, particularly to Arthur but maybe to both your children, changed over time?
I think when he was first diagnosed, I was in a panic about how much support he needed and how quickly he needed it. Everything I read was about early intervention but nothing was being provided. I went looking for play therapists, paying for private occupational therapy. I changed his diet. I was stressed out to my eyeballs becoming an expert. And thank god I chilled out because it was completely unsustainable. Eventually I calmed down and realised I can’t control this. I accepted that we’re never going to get the right amount of support, and we’ll just do our best with what we can, which is not easy. The thing that scared me so much when Arthur was three or four was the fear that I would be the reason he didn’t thrive. That it would be my fault because I chose the wrong therapy. You can completely twist yourself in knots about that kind of stuff. Every now and then I have a flash that I’m doing the wrong thing but I don’t dwell on it the same way. I have accepted that his disability is out of my control and I just have to do my best and I can’t do anything else.
How has being Arthur’s parent over the last eleven years changed you?
I see the world completely differently. I didn’t used to think I was a judgmental parent or person but I’ve had every bit of ego stripped away from me as a parent. I realised how little control I had over my life and I think that’s been an incredible experience which I’m grateful that I’ve had. Society was telling me that as a mother, it’s all my fault if he doesn’t thrive. And actually I’ve learned that isn’t true. You don’t have control over everything, and that kind of takes your judgement out of it. I look at families who are struggling now and I see a million reasons why that might be happening.
I used to be very eco conscious to the point where I never used to drive my car, everything was on foot. The kids were in cloth nappies. Then I realised that a lot of those choices were taken away with Arthur’s disability. Like he only eats one kind yoghurt (one of only four foods he eats) and it’s in a tiny plastic pot. I’ve just got to buy the plastic pots. And now I need to use the car far more, to keep Arthur safe and for us to be able to function as a family. So I’ve had to let go of judgement around how other people make those choices, and that’s been incredible.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
There 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.
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.
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…)
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.
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