A Parent Perspective: Interview with Caro

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.

This is my latest interview with a parent who is raising a child who is not typical. This week it is with Caro, who is one of the friendliest people I’ve met on the internet.



Can you describe your family?

There is me, my husband, and our children: a boy of 17, a daughter of 15, and my youngest son is 11. My daughter is autistic and has Pathological Demand Avoidance (PDA).

If you met her, depending on what your benchmark of neurotypical is, you might notice she’s different but she’s quite hard to spot. Behind that facade is an absolute ocean of anxiety. My daughter also has Obsessive Compulsive Condition (OCC, or OCD – whichever is your preference) which is part of the pathological demand avoidance. So whilst her brain is telling her, ‘You’ve got to be in control, you can’t do what this person is asking you to do’, the OCC kicks in and she will say, ‘I’m going to do it, but I’m going to do it my way’. They just fight each other all time and it makes life very debilitating.

Women and autism don’t have the greatest history. For every female diagnosed as autistic there are three males which means that a lot of women are being missed. Women present very differently and the current questionnaire, the system of how we diagnose autism, is based on male research.

Lack of understanding means that when I explain even to the most learned of healthcare professionals my daughter is autistic and has PDA, I’ll get a little head bob, and ‘I’m so sorry’. It really annoys me because that’s not helping anyone – her or the path that lies ahead for others. We need to change that whole conversation.

Was there a moment when you noticed your daughter was doing things differently to your older child?

She didn’t walk until quite late but I wasn’t overly worried. She was doing this thing as a toddler where she would turn my face to speak to her. I had previously looked after a little boy who’s deaf so I thought she had hearing difficulties. We took her to see a doctor and he said she has really bad glue ear but it will clear. When she started at nursery she was speaking and walking but she wasn’t socialising the way my son had. I went to see another paediatrician who wasn’t that worried and at the bottom of the note that he sent to my GP, it said ‘Mother worried’.

I’ve got a lot of ‘Mother concerned’ notes and it wasn’t until she was in year two that somebody started to take it seriously. By then she was on her third school. We had a terrible situation where she was being treated terribly by one of the members of staff in a verbally abusive way. My daughter had been told she was stupid, he would rip work up in front of her. He sent her down from year one to reception class. We removed her straightaway but I think that had lasting effects on her.

She was diagnosed with audio processing issues when she was seven but we started seeing more people privately because the waiting lists to get a further diagnosis were years long. When she was nearly nine she got the diagnosis of autism, and a year later, a diagnosis of pathological demand avoidance. By then her issues with executive function were obvious. She was still in a mainstream school and masking a lot, so a lot of what we were being told wasn’t really fitting with her behaviour at home.

At one stage as a family we didn’t go out socially for about a year, not because we were embarrassed about her behaviour, but because it was so upsetting and difficult for her. We would parent the children almost separately, so my husband would sometimes take the boys and I would take my daughter. I think that was an error – I think siblings should be exposed to it all – but at the time we felt it was a lot for us and for them. My husband played sport for a living and therefore he worked at weekends so I was on my own a lot with all three.

How do you approach language around autism?

I listen to autistic people saying, ‘This is how I want to be addressed,’ and I use that language in my family. I’ve always felt that communication is the key. Where you don’t have information there is a void, and people can fill it with anything they want. There is no embarrassment to any of my daughter’s diagnoses.

How do you judge how much to share about your daughter?

I don’t want to give too much of her away, because I think she deserves her own social media footprint. I think we want to make sure that we maintain a level of respect for the person that we’re raising, because I would hate for my daughter to read or see something upsetting. But I felt very lonely for a very long time, because there were no other parents at her original schools that were in a similar position, and it felt very isolating to me. When I started sharing on social media, people said, ‘Me too’, and it felt less lonely. It’s a difficult line and I often sit back and take a break, but there are phenomenal support groups on social media.

I realised, probably a bit late, that I was putting her face up and then rethought. I definitely was guilty of saying, ‘Oh, woe is me,’ a few years ago. What I didn’t do enough was sit and listen, because my daughter isn’t the first autistic person to be born and she won’t be the last. I’m listening to autistic people because I can talk about my learned experience as a parent or carer, but I can’t speak about what it’s like to be autistic. Most of the information that we have has been from healthcare professionals that are neither autistic nor raising those that are.

How has your approach to your daughter’s autism, or parenting, changed over the years?

My daughter had a lot of behavioural issues when we were out when she was younger (which makes perfect sense now) and my eldest son found that exceptionally challenging. I was saying, ‘You go and play with your friends, everything is fine.’ I didn’t really know what I was dealing with and didn’t feel supported, even though I’d read every available book and seen countless doctors. Actually what I was lacking was self-confidence. When I read your book, I saw you got your confidence early and I envy that.

Anyone that’s ever been into a meeting with their Local Authority will know it’s probably one of the most terrifying things you’ll ever do. I remember sitting in a meeting about her, listening, and when I walked out I said to my husband, ‘They’re all completely wrong about her. I’m never going to go into another meeting so ill prepared again.’ The next year I spent weeks preparing for the meeting and handed a booklet of papers out to everyone. I said, ‘I’m really uncomfortable with the language that you’re using.’ I corrected things that were wrong. It’s not about dismissing what professionals are telling you, it’s that not everything will apply to you and it’s about getting the confidence to pick and choose what will help your child and your family. I think that starts with looking on social media or reading a book or finding people in similar situations.

My husband, Will, is the most incredible support. I’m the primary carer and I struggled with not earning money for a long time. I didn’t want to be a burden but I undervalued what I was doing because caring isn’t valued by society. When I’ve sat through those hideous meetings thinking I can’t do this, he’s there saying, ‘You absolutely can.’

My husband and I are very different. I am over communicative, he under communicates. We are polar opposites in lots of ways, but our life goals and the way we raise children has been in sync. I do think there is luck involved. My family are really important support to us – especially my mum.

I get messages from people saying their family members have criticised how they parent their autistic child, how they should be firmer. How can people not see how unhelpful and damaging that can be? I remember someone very early on into our daughter’s diagnosis a friend sending me a link to an article about how to cure autism. It’s what’s called ‘soles of your feet’ behaviours – things that you can’t see that you do, that you forget are there, but they’re part of you. If people that love my daughter will say or send things like that, then heavens only knows how we’re ever going to make the path less challenging for her and people like her.

No child comes with a book of instructions. I spent far too long looking back and thinking we should have done things differently. I think that would be the advice I would give myself now: you’re doing the best you can at the time. I think we made terrible errors with my daughter when we didn’t know what was going on, where I was telling her off for doing something she had no control over. I didn’t know what else to do at the time.

Do you think there are things that you’ve learnt through parenting your daughter that have changed the way you are with your other children?

Yes, definitely. There are loads of things that my daughter has taught me that has made me a better mum. I’m much more patient. I now always listen first, there is absolutely nothing off limits. I think I would have been far more staid had it not been for her and the way that she is. I have seen now that behaviour is communication so rather than reacting straightaway, I’ll ask, ‘What’s going on?’ My daughter taught me that trying to fix things is no good when the situation is full of anxiety, noise and stress.

How has parenting changed you over the time that you’ve been doing it?

I think I am a much better person. I used to look back and regret a lot. This is not how I thought my life would be – not being negative, it just isn’t what I expected. I am now more than okay with that. It’s absolutely wonderful.

I think as carers we sit on a tightrope between our children and people that aren’t like our children, and we want society to meet a little bit in the middle. I want people to understand that it can be difficult, like any parenting, but there are so many incredible parts. I’m trying to listen to autistic people whilst caring for someone that is autistic, whilst not being autistic myself.

I wouldn’t change my child, not for me, but I’d take away some of her anxiety and her challenges if I could. My daughter has changed us all and she is glorious and brilliant (with splashes of, ‘How are we going to deal with this?!’) My boys are better humans because of their sister. My husband is entirely different to the man that I met 25 years ago. I absolutely wouldn’t change a single tiny hair on my daughter’s head. I am so glad that I am her mum.

You can find Caro on Instagram @spikey and Twitter @CaroTasker

A Parent Perspective: Interview with Fay

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.

This is my latest interview with a parent who is raising a child who is not typical. This week it is with Fay. We became friends when Ben and Caleb were small, and Fay and I were trying to work out how to be parents.

Note: includes a description of pre-term birth.




Can you describe your family?

We’re a family of 3, plus a grandparent. I’m a single parent who works part time with a 5 year old, Sarai, and an 11 year old, Caleb.
 
How would you describe Caleb?

Handsome! He’s so affectionate, nothing phases him. For example, he can usually use his iPad but today his arms are a bit all over the place so he can’t, and he’s getting us to work it for him. That’s what I admire about him, no matter what he’s been through, he just continues to smile.  

He loves YouTube, reading, lying in bed listening to the radio – only Capital radio! Thankfully he was born in this generation where there’s all this technology, otherwise I don’t know what I’d do!
 
Caleb’s not able to walk, sit unaided, feed himself or get himself dressed, but he gets by. He’s got people who will get him dressed, feed him, help him look good. He uses a wheelchair.
 
When did you first realise that Caleb was going to be disabled, or have special needs?

I went into labour at 21 weeks. When they examined me they said I was miscarrying and I burst into tears. I asked when it was going to happen. They said it wouldn’t be too long and put me on bedrest. A consultant in pre-term labour came to see me after a scan and said, ‘I’m really sorry you are miscarrying, but you’re young, you can always try again’. I was just waiting, worrying, and nothing happened.
 
Then the bleeding changed and I felt Caleb move for the first time. There was nothing I could do. I went into labour one night, and Caleb came at 23 weeks exactly. I thought he was dead because I couldn’t work out what was going on. I just saw this red ball and I didn’t want to look, then they took him away. They said he was alive.
 
But that’s when the problems started because he was in NICU and really unwell. Other children came in after him but then left hospital and we were still there. I became a mini-nurse, watching all the screens. We were discharged in October after seven months. In January we had a community paediatrician check-up and the doctor said, ‘Have you heard of cerebral palsy?’ and I just cried. I started looking at him differently. I had been thinking he wasn’t sitting up yet because he was premature. Then all these healthcare professionals started coming in and out of our lives and I started noticing a bit more.
 
For Caleb cerebral palsy was just the fact that he couldn’t sit, walk, he couldn’t really talk. Every time he went into hospital it was always to do with oxygen, because he had chronic lung disease. He was actually doing alright – he was rolling. You’d wonder where he was and have to follow the oxygen tube round the house, find him under the table! That threw me when he was later in hospital after hip surgery because that wasn’t to do with his chest. I’m used to him being ventilated, but that time it was different and unfamiliar.
 
In what ways is your life now how you expected it to be, and how is it different?

I didn’t really have expectations. I got pregnant at 22, had Caleb when I was 23. Life now with Caleb is great. Once you start having a better understanding of disability, how to manage it, have a relationship with your child – it’s kind of like having super-powers. If I was to do Mastermind in Caleb I’d ace it! It’s just one foot in front of the other, learning to be content with what we’ve got, being proud of ourselves for what we’ve endured. I think acceptance takes a while. I think the acceptance is 99.9% there for me and things have fitted into place. I’ve learnt how to manage, how to adapt.
 
There are highs and lows. Caleb’s always happy, and it’s me who goes through the emotions. There are days when I feel like I’ve got this – I know what I’m doing with meds, baths, feeding. And then there are days where I just don’t want to do it. I can plan like everyone else but things don’t always go to plan, illnesses come on all of a sudden. Sometimes I get a bit of anxiety. I try not to think long term. I get on with it but I’m thinking I don’t think I’ll be able to lift him in a year’s time. I’m being an advocate all the time.
 
How do you think raising Caleb has changed you?

He’s changed me for the better. When I was growing up I was quite insecure but having Caleb has given me confidence. I don’t take any crap because I’m fighting a battle every day. It’s made me a stronger person, as well as more emotional. People used to say ‘When Caleb goes to school you won’t be able to be there to fight his battles’, but I’ll still be there, fighting all his battles. I didn’t think I had it in me.
 
How much of what is difficult in your lives is to do with people not helping in the way they could, rather than Caleb’s disability?

The lack of understanding, even from family members, is difficult. Sometimes Caleb says something and they ask me, ‘What did he say?’ I’m thinking he’s sitting right next to you and understands you. Why can’t you say, ‘Caleb, why don’t you say that a bit slowly because I didn’t hear you’ If I’m there I will intervene and Sarai will say, ‘He said this…’.
 
In my culture there’s a thing of ‘God will help, God will see it through’. So if I say we need to do something, people say, ‘No, you’re being defeatist here. Where’s your faith?’ I have faith, but you have to help yourself. Caleb has glasses and people say he doesn’t want to wear them so don’t put them on, but I’m his parent and he needs glasses. I know my kid better than anyone. Maybe because I don’t have a partner, it’s like they still don’t see me as an adult. It frustrates me because I am the adult – I’ve got two kids.
 
There are some professionals that are really clued up and there are some that aren’t. We’re fortunate that we’ve got good relationships with our health professionals, really good ones that I can have a proper conversation with. I think sometimes if you’re really difficult they put you at arms’ length and you don’t get the support you need. You’ve got to be open with people and tell them how you’re feeling. I find with healthcare if you don’t ask, you’re not going to get.

How much do you think your age affected the way people treated you as a mother? Do you think people underestimated you?

Sometimes I’d be at an appointment with my mum and they would talk to her, not me, and she can barely speak English! I think people underestimated me, sometimes in a patronising way, where they were like ‘Don’t worry, in time you will get it.’ As if when I’m 40 I’ll suddenly get it.
 
With doctors there’s a spectrum. You get some that are bubbly, keen, really engaging with the kids. And then you some who have minimal words, no social skills, who look more uncomfortable than me. You get the really nice nurses who ask you how you do things, and ones who aren’t like that at all. You meet so many different types of healthcare professionals. I’ve learnt to ask the questions I need to ask.
 
When Caleb started school aged four the headteacher asked, ‘Does Caleb need all of this?’ waving her arm at his equipment. And I said, ‘Yes he does. Every single one. Do you want me to tell what it’s for?’ She said, ‘Oh no, it’s fine, it’s just a lot of space’. I said that’s not my problem and from then she didn’t like me. When Caleb got a specialist buggy she said we couldn’t leave the buggy outside the classroom. I said, ‘You know Caleb can’t walk so how do you expect him to get home?’ People think you’re being difficult, but actually it’s them not thinking before they speak.
 
What do you wish other people knew?

I was the first in my group to have a baby and no one understood the severity of what I was going through. People say, ‘Fay you’re always smiling, you just get on with it’, and yes I do but it’s really hard. I have to make appointments, chase up test results or a new piece of equipment, or something is broken and I need to get it fixed. There’s so much to organise.

People haven’t offered support – even just to come over and hang out. Some people are intimidated by his feeding tube but it’s not complicated. Caleb isn’t fragile, he’s like any other kid. Please just treat him like a normal child. I’ve been at people’s mercy a lot which I don’t like.
 
I also wish people thought more about emotional wellbeing. I wasn’t put in touch with other parents of disabled kids. I was lucky to meet other parents at a conductive education charity. I struggled with not having a support network. Once you’re in your own four walls, no matter what you’re going through, you always feel like you’re the only one going through it.
 
I wish Caleb had more social life and friends. With Sarai, Caleb has come out of his shell a bit more. He mimics her, they wind each other up and it’s so nice to see that. Sarai’s never known any different. If Caleb and I go to pick Sarai up from school, she runs up to him. Sometimes she does notice when people stare and ask about Caleb, but if her friends ask a question she’ll just answer it: ‘That’s his wheelchair.’ I’ve explained to her he’s disabled and she used to say ‘be-abled’. She wants Caleb included. I think that’s why they’re so homely because the love they get at home is enough for them.

Time Travel

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.

Link to buy from Bookshop.org here

A Parent Perspective: Interview with Kara

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.

This is my latest interview with a parent who is raising a child who is not typical. This week it is with Kara Melissa Sharp, whose blog I first found when Ben was tiny. I loved seeing her family’s travels and approach then and hearing about how they all are now.

Could you describe your family?

I have two kids: Sebastian is almost 13, he has cerebral palsy (CP) and a seizure disorder, plus a G-tube (gastrostomy feeding tube). Sebastian is significantly affected by his CP. He uses an eyegaze communication device. His sister, Tallula, is 8. We’re from all over the place – I’m from Michigan (USA), their dad is from Australia, Sebastian was born in London and his sister is Canadian. We’ve been in Toronto, Canada, since 2010.

Sebastian has a service dog – a golden doodle named Ewok. When Sebastian has seizures Ewok licks his face and it helps him come out of them; he smiles and Ewok stays by his side for the remainder of the day. He’s definitely an important member of the family.

What does Sebastian love doing?

He loves to be in the kitchen when I’m cooking – to be a part of making dinner and his blended diet. He’s excited that when we move we’re going to get one of those big mixers that goes on the counter with a switch so he can control it. He loves baking – he has an Instagram account called @baking_jedi which his caregiver Layla helped set up. She also helped him redo his eyegaze (communication aid) so it has more teenagery language like, ‘Hey, Whats up?’ and emojis. He thinks it’s hilarious.

Sebastian loves joking. He has lots of jokes on his eyegaze. For years, he has brought in a joke to school each morning (on his step-by-step switch or on his eyegaze). We have so many joke books but still we’re running out of jokes.

He loves being with Ewok, taking him for walks, and Star Wars – the new movies and he likes to watch us put together Star Wars Lego. He loves spending time with his sister. He likes socialising with friends though because of Covid he hasn’t had that outside of virtual visits – he has a few good friends that make it a priority which is nice. He also likes playing soccer in his walker, going swimming, riding his bike.

What is the language that you use to describe Sebastian?

I’ve never used the term ‘special needs’. He has a disability, he is disabled. I’ve talked to disabled people and there are a lot of good conversations about the language they prefer to use to refer to themselves. I remember when he was little learning about people-first language, for example saying Sebastian has a disability instead of Sebastian is disabled, but several disabled people that I’ve spoken to don’t like people-first language. It comes down to identity and being disabled is part of his identity.

How were Sebastian’s early months and years, and at what point did it became clear he was (or was likely to be) disabled?

He was born not breathing after a pretty traumatic birth. He was in hospital in London for 16 days and I remember the paediatrician saying Sebastian would probably have cerebral palsy. I didn’t know what that was or what it meant.

It was hard when Sebastian first came home. The nurse had to come regularly to check on him, he pulled his NG (nasogastric) tube out a lot and I had to learn to put it back in. We went to therapy and no one would tell us he had CP, until a neurologist finally told us Sebastian had dystonic cerebral palsy when he was 3 months old. We didn’t tell anyone. You just pretend everything is fine because with a baby it’s easy to pretend everything is okay.

We moved to Cairo when Sebastian was five months old. I was home with him all the time and the only person who really knew Sebastian was our cleaner, Hueida. She didn’t speak much English but she communicated that she could tell something was different about him. We announced on my blog that he had CP when he was about 10 months old. It was on World CP awareness day. I read what we wrote recently it was like this thing we created to tell people what was happening in our lives but it really didn’t tell them.

I was looking after a baby in a country where I didn’t speak the language, had no family and no friends. My partner worked all the time. I had to order books about CP and when they arrived they were so outdated and unhelpful. It was before Facebook etc but I joined a Yahoo group and met two moms from Melbourne who both had sons with CP. I got to meet those moms and their boys on a visit to Australia and it was amazing. That was my real introduction into a community, compared to Cairo where there was a boy with CP who used to beg outside the train station and a school for kids with disabilities. I went to visit and asked what language they used to speak to these kids because they were speaking to me in English. They said, ‘Oh they don’t talk. We don’t talk to them,’ and I thought my kid cannot be here. That was when we knew we would have to move for Sebastian to be able to go to school.

How does Sebastian’s disability affect his day to day life, and what do you do to help him access as full a life as possible?

Sebastian needs help with everything so we have always done hand-over-hand projects and found creative ways to help him do art. We recently got an Xbox with a huge package of switches. His dad and caregiver have figured it out so he can hit the switches with his head to stop and go. He co-pilots so someone else does the direction and he likes racing games. We’ll try to find as much technology as possible to make his life easier and provide more independence.

When he was little there was so much focus on being able to walk, sit up and talk and I feel now like those are not the most important things – the priority is that he can communicate with the world. His eyegaze computer is on our table all the time so he can access it.

We take him everywhere. We go to museums and parks and we have travelled the world. I think it’s really important that people know that these things are possible, even if it involves more challenges. It is important to us to take him out into the world.

How is your life different or similar to what you expected?

My mom was a stay-at-home mom and I always imagined I would be at home with my kids before returning to teaching. Their dad is a journalist and we thought we would go to different locations for a few years at a time.

I haven’t worked since Sebastian was born and my kids haven’t had access to that kind of international education. I had to accept that his education was going to be different but I still worked really hard to make sure he had the most equal education possible – that he was actually taught things and not just put in a room. I never realised how hard I would have to fight for his education. Our kids couldn’t go to the same school near us which was important to me. They now go to a school further away in a different, really diverse, community. There’s also other kids like Sebastian and his sister has people who know what it’s like to be around other kids in wheelchairs.

It was hard for me at first not returning to teaching, but then I got used to it. I’m taking my Masters in Creative Writing Non-fiction right now, and it’s one of the first things I’ve done for myself since I had Sebastian.

I don’t think I imagined how isolating it would be with Sebastian, but also the community that I’ve found, the people in my life, would not be here if it wasn’t for him. We have a wonderful community of folks that love and support Sebastian and our family.

How do you think being Sebastian’s mother has affected what kind of mother you are to Tallula?

I get upset when things aren’t done properly when it comes to Sebastian because I worry about his health. When Tallula was little and she could do things like climb I would think: on the one hand I know what a brain injury can do, on the other hand I’ve never seen a child of two climb onto a chair like that and it’s amazing! I think I’m not as worried about her. In the early days watching Tallula grow was mind-blowing. The parenting is different, because the child and their experiences are different.

How your approach to Sebastian’s disability changed?

I think in the early days I tried to educate people – I had a blog and I wanted people to know that Sebastian has CP but also we have a really good life, live abroad and travel. I didn’t want people to feel sorry for us but to know that just because Sebastian can’t talk doesn’t mean he can’t understand you. I had other parents reach out to me and I was helping them in the way that the other two parents in Australia had helped me, and that felt really good.

When Sebastian was 8 I realised he didn’t want to have a Facebook page with his pictures. He never wanted people to know what medical stuff was going on with him so I stopped doing it. I took our photos off Facebook, shut down the page and made my blog private.

Living in Toronto, we’re more connected to people in real life so it was easier than it had been in Cairo. Also, I had been educating people for eight years and I was getting tired. I loved hearing from people when they said that something I wrote helped them, but also I needed a break.

So the difference now is how much I put out there in the beginning versus how little I put out there now. Now I’m writing about my experience as a parent and what that’s like. I’m working on a writing project with Sebastian – which is great because he’s directly involved.

Reading what others in the disabled community have written about representation and “not about us without us” I have learned how important it is to give Sebastian the choice to share what he wants because they are his experiences, and it is his identity. I want to speak for myself as a parent, and I want to enable him to speak for himself, which does take a lot of work since he communicates differently, but is so important to me.

What do you wish other people knew about your child or your family that you feel like you have to explain?

I think the biggest thing is that he gets it. Sebastian’s smart. He hears you, he can communicate, he has thoughts. It’s not okay to treat him like he’s not there or like a baby. I’m tired of pushing him in a wheelchair and kids saying, ‘Look at that baby’ and not having that parent say, ‘That’s not a baby, that’s a kid in a wheelchair.’ That’s what I want to see change. I don’t want to be the person who’s educating all the time. I shouldn’t have to either shut you out because I don’t feel like dealing with that today, or get really worked up and say ‘Hey, actually he’s 12, this is a wheelchair – it helps him access the world around him. It’s awesome’.

Also I wish people thought more about ableism. We just watched a Pokemon movie and I had to stop it because the main villain is in a wheelchair because he has a degenerative disease and there’s this small scene where he says, ‘I’m confined to my chair. I have no power to do anything.’ I stopped the movie and said to the kids, ‘Look guys, this is ableism’. I’m interrupting a super fun movie and Tallula’s looking at me, but I’m not letting this pass because it was such a small moment but so big! I told them he absolutely has power. And of course they know but I just needed to make sure, but Tallula was kind of trying not to laugh at me because she says, ‘Mum, I know this stuff!’

Kara can be found on Instagram and Twitter as @freeastrees.

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

My Book is Out!

The Cracks That Let the Light In: What I Learned From My Disabled Son is about the last ten years of my life, becoming a parent and then working out how to be Ben’s mother.

People often assume that having a disabled child is awful, a pity party. It isn’t. Some things about being Ben’s mother have been difficult, and my learning curve has been steep, but our lives aren’t miserable. In fact Ben is thriving and my children and I try, much like any family, to live the fullest and happiest lives we can. My book is about how being Ben’s mother has changed me for the better. It’s about family love and hope.

There’s a brief video of me talking about why I wrote the book and what it is about here:

An honest and unflinching account of Jessica’s journey as the mother of a child born with complex needs. Essential reading… and a source of solace for those who may find themselves on a similar path’ Leah Hazard, author of Hard Pushed: A Midwife’s Story 

A powerful, moving and inspiring story – it opens up a whole new world of understanding.’ Esther Freud

‘The Cracks That Let the Light In chimed so clearly with my own experiences of growing up with a disabled older sister and my feelings as a parent. The book reveals that disabilities only make people difference up to a point. And that parenting, and the love of a parent, is the same.’ Rory Kinnear

‘A universal story of family. This uplifting read sets out what it means to be human, how our similarities are far more obvious than our differences and the powerful force of maternal love. I loved every word of it.’  Rebecca Schiller, author and Co-founder of Birthrights

It is available to order now:

Bookshop.org

Amazon

Waterstones

WH Smith

Foyles

Blackwells

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.

A Parent Perspective: Interview with Penny

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. 

Find Penny on Instagram and Twitter @pennywincer

8 of my Favourite Non-Fiction Books about Disability

I have tried to find books written by disabled people and these are some of the best I have read. These have all given me valuable insight into the experience of being disabled – some are also confronting (which is necessary), some are beautifully written, some are funny. All are worth your time if you, like me, read in order to widen your understanding of people and the world.

A good place to see more is by following #disabilityreads on Instagram.

1. SITTING PRETTY: THE VIEW FROM MY ORDINARY RESILIENT BODY by REBEKAH TAUSSIG

This is one of my favourite books, of any genre. It does exactly what I want a book to do – speak truthfully and lyrically about complex issues. It really digs into the ways that disabled people are made to feel like the difficulties they face are individual, when actually they’re societal. It’s funny, feminist, and powerful.

Buy it here

2. DISABILITY VISIBILITY: FIRST-PERSON STORIES FROM THE TWENTY-FIRST CENTURY edited by ALICE WONG

This is a collection of writing by a really diverse group of disabled people and so there is something for everyone. I have dipped in and out of it, taking my time to read the whole book. The range of topics and styles make it a powerful anthology, representing views and insights that I haven’t read elsewhere.

Buy it here

3. SAY HELLO by CARLY FINDLAY

Carly Findlay is a colourful, insightful presence on social media and her book is just as clear and powerful. She challenges how we approach physical difference and disability, and how widely held assumptions affect her, and is entirely convincing in dismantling prejudice.

Buy it here

4. THE PRETTY ONE by KEAH BROWN

This collection of essays covers disability, popular culture, race, discrimination and how to find joy in complexity. It’s about a woman growing up in America and Keah Brown is a smart, accessible narrator. 

Buy it here

5. CONSTELLATIONS by SINEAD GLEESON 

I don’t often re-read books but I have read this twice. I absolutely love Sinead Gleeson’s writing. This collection covers parenting, femininity, family, love, death and bodies. A lot of it isn’t explicitly about disability, but her descriptions of being ill and using a wheelchair as a younger woman are powerful and affecting.

Buy it here

6. DEAR PARENTS by MICHELINE MASON

I was lucky to see Micheline Mason speak when my son was younger, but this book is a good alternative to hearing her in person. Micheline addresses the relationship between disabled children and their parents. She is both a disabled person and a parent of a disabled child and her insights can feel challenging, but are undoubtedly necessary.

Buy it here

7. WHAT THE **** IS NORMAL? by FRANCESCA MARTINEZ

Francesca Martinez is a comedian and so, of course, this is a funny book about being ‘wobbly’. She combines autobiographical detail with a more general campaign against the ways in which we are taught that normal is best.

Buy it here

8. THE WORLD I FELL OUT OF by MELANIE REID

Melanie Reid became disabled following an accident and so this is an account of coming to disability relatively late. It describes all the ways in which she had to accommodate her changed body, and how that altered the ways she saw and was seen by the world. It is unflinching and compelling.

Buy it here

A Parent Perspective: Interview with Sabrina

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

Could you describe your family?

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

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

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

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

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

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

How did you find the early years with Lucy?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Find Sabrina on Instagram @sabrinamrusso