A Parent Perspective: Interview with Anoushka

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 people with similar experiences.

This is my latest interview in an occasional series – A Parent Perspective – with Anoushka who has two sons, Spike and Oscar. Amongst the many interesting things Anoushka talks about is setting up Transport Sparks, a social group for young autistic transport enthusiasts.

How would you describe Spike?

Spike is 12. He’s very funny and charming with a good sense of the absurd. He’s quite a good negotiator – very skilled at getting us to add an extra leg to a journey, or more time on his devices. He loves going to the cinema, trains, hand dryers and adventuring around London. He’s also autistic and has ADHD (inattentive form), so he has some struggles with typical forms of social communication and he has sensory processing differences which can be a bit intense for him. He also has an amazing memory and a very interesting way of looking at the world.

When did you realise Spike wasn’t neurotypical?

From quite early on. He had a lot of trouble sleeping and feeding. He missed a few early milestones, he didn’t point or crawl. The books said all babies are fascinated by faces but he was not at all. Both my husband and I thought about autism before Spike was a year old. He started struggling in stay and play groups and while he started speaking at a year old, his language developed slowly. We went to see a GP when he was two, and had a diagnosis of autism by the time he was three.

How did you feel about the diagnosis at the time?

I felt like the possibility of autism had been rattling around in my brain for such a long time that it was a relief to have the question answered. There was an optimistic aspect to it because now we could get on with our lives. But it’s a challenging process to go through as a parent, to have to list the ways your child isn’t like other children, the difficulties they have.

Following the diagnosis, we were occupied with trying to set everything up – to apply for a statement of special educational needs, find a school, make sure that he was getting enough speech and language therapy, physio or OT. I didn’t feel too isolated but actually I hadn’t really come up for air and when I did I felt quite alone. I didn’t know anybody who had gone through anything similar and I didn’t really see other parents. At some point I found a very good group, mainly online, and we met up from time to time but it wasn’t really until I started meeting others through Spike’s special interests that I found lots more people who got it.

How was it having your second child?

I had reached a point where I had some mental space to think about another child. Although we were still in the process of getting Spike’s diagnosis, I’d reached a point of acceptance quite quickly and so if Oscar was going to be autistic that was fine, though I was alert to how he was developing. He was very different to Spike and him finding things easy felt weird and magical. He followed a more typical trajectory of milestones and it was a very different experience, a different delight. Oscar is now 9.

What were your expectations of what being a parent would be like?

I didn’t really have any idea what it would be like being a parent. My husband and I are slightly quirky only children and in some ways I expected to have slightly quirky children. I was excited to meet them and get to know them. I can remember having a picture in my mind of walking down the street with my child having a conversation. That took a long time to happen with Spike but I can remember the moment when it did happen and thinking, ‘Oh, we’re here.’ It was lovely to have that moment with Oscar, too and we reached it much more quickly than I expected! He’s a good talker.

How was school for Spike?

We had a relatively accommodating primary school and Spike had some good years, depending on the teacher. We had a lot of control over who worked with Spike so he was always really well supported. We were lucky that his year group were a wonderful bunch of children. Spike did a presentation to his class in year one about how things were for him and this helped his friends support him. It was always hard finding the balance between the academic focus in school and what we wanted to prioritise so Spike had time out of school. That’s a big reason why we asked the local authority for funding to home educate.

What’s your approach to home education?

Our starting point is always something he is interested in. We do project-based work and look for ways to bring in new information. We’re keeping our eye on the national curriculum and he’s a little behind his peers in some areas though he has some real strengths too. We work on Spike getting to know himself better, his communication, learning about the world and independence. We spend a lot of time out of the house because he loves travelling and learns well on his feet. He’s learning as much as he ever did, if not more. It’s a team effort with us, tutors and professional input.

In an ideal world I would like Spike to be at school but we can’t find the right place for him. There seems to be this idea that autistic children are either so-called ‘high functioning’ and can be integrated into a mainstream setting quite easily, or they have more substantial learning difficulties and higher support needs. I think a lot of autistic kids actually fall between those two. He needed more support than the mainstream schools could offer, but not at the expense of his education. It felt like we were being asked to choose.

How to do you talk to Spike about autism?

He knows he’s autistic, although we’re still refining his understanding of that. We’re introducing him to the idea that everybody has things they need support with and things they’re good at and he shares some strengths and weaknesses with the wider autistic community. It’s striking a balance between letting him know that if he’s struggling he can factor in the fact that he’s autistic, without saying that all the things he finds difficult are because he is autistic.

Could you talk a bit about Spike’s passions?

Spike always had things that he was very deeply interested in. It started with letters and numbers, then logos, idents. When he started liking the London Underground he had been quite anxious out of the home, and we saw that it was a way to broaden his horizons. He didn’t like the noise of trains but he also really wanted to be near them, and we wanted to help him work through this tension. It also gave us this shared experience of doing things together.

My husband and I usually take it in turns to go with Spike on a journey so we were spending every weekend going across London and it could be a bit lonely. I had heard that lots of autistic kids like trains but I couldn’t find any clubs. I tweeted saying, ‘Any other parents of autistic kids who like transport interested in getting together?’ and then I was inundated. I set up Transport Sparks – a social group for young autistic transport enthusiasts – about three years ago and it’s evolved into something brilliant.

When Spike meets up with a bunch of Transport Sparks they really connect with each other. They’re always so surprised that they have that meeting of minds and it’s also great for the parents to chat online and off.

Are there things that are challenging?

Spike’s anxiety permeates most aspects of his daily life and therefore our lives. That’s definitely more challenging for him than it is for us, but it’s difficult and affects the things we can do. We do a lot to try and mitigate it, but we can’t make it go away entirely. Spike does have some distressed or challenging behaviours from time to time. We’ve got better at supporting him and coping, ourselves, but it can be tough.

Has the way that you see the world changed since having Spike?

It’s a disgusting cliche, but I’m so much more empathetic than I used to be. I think it’s also made me feel more comfortable with uncertainty. I can’t see beyond a few months into the future, everything’s constantly under review, and that’s okay. It’s definitely made me more confident as a parent and self-reliant. There was a time early on when I thought the professionals had all the answers and now I realise that they are advisors and my husband and I know Spike best. We have to arrive at our own decisions. I hope I carried that forward with Oscar.

Are there things that Oscar finds difficult about having an autistic brother?

There are things which I don’t think he appreciates are, or could be perceived as, challenging – he doesn’t really see them that way. He’s found it more challenging as he’s got older. I’m starting to see that he finds it more difficult when, for example, Spike is very upset and he’s beginning to be concerned that he’s “adding to our problems” if he has difficulties. I have to be very clear that he can bring the good and the bad to us.

I noticed recently that Oscar was cross with himself for accidentally using negative language about autism and I felt bad that he was tying himself up in knots, but then also a little bit of me thought it was good that he was thinking about it and trying to choose his words carefully. I said as long as we think about our words, talk about them, we’ll be fine.

Is there a key thing you’ve learned about being a parent to Spike?

I remember a really clear moment of having a chat with someone in the playground and she asked, ‘What’s your son like?’ I gave her this terrible answer, like, ‘He struggles with this, he’s not very good at that.’ I burbled this all out at her and she didn’t really know what to say. It was a really clear moment of thinking that isn’t who Spike is to me. What am I saying? I’d adopted the language of the professionals. I thought I’m going to change the narrative and frame all of this differently, because it’s just not working for me.

I’m a rather self-conscious person and autism can be quite a loud, visible thing, but Spike has helped with that. He imitates transport noises and announcements when we’re out and if you’re feeling embarrassed or self-conscious about it, then other people pick up on that and everyone is tense. I’ve learned to just enjoy his enthusiasm and concentrate on him, and often people pick up on that positivity instead. Spike’s not particularly shy. He enjoys people and having conversations. We’ve ended up having so many more positive interactions with people than negative ones.

It took a while to unpack Spike’s way with words. He often uses scripting* and I would say 90% of that is meaningful – borrowed phrases used with intent. The rest is verbal stimming*, but even that is information. He’s letting me know he’s feeling a particular way. It’s all communication, if you’re paying attention.

You can find Anoushka here:

Blog: Spitting Yarn

Twitter @spittingyarn

Instagram: @spittingyarn

Transport Sparks Facebook group

*Definitions of some words:

Scripting is ‘the repetition of words, phrases, or sounds from other people’s speech.’

Stimming or self-stimulating behaviour ‘includes arm or hand-flapping, finger-flicking, rocking, jumping, spinning or twirling, head-banging and complex body movements. It includes the repetitive use of an object, or repetitive activities, speech or sounds.’

A Parent Perspective: Interview with Emma

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.

Emma is on Instagram: @ms_emma_gardner and Twitter: @ms_emma_gardner

A Parent Perspective: Interview with Rachel

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.

Rachel’s website is here. You can follow her on Instagram, Twitter, and Facebook.

Her book, The Skies I’m Under, is available here

Rachel runs parent workshops and CPD accredited training for professionals which can be booked through Eventbrite.