Almost two years ago Ben went on a school trip. He left on Monday morning and returned on Friday afternoon, and we got some messages inbetween but we were otherwise largely oblivious to what he was doing. We knew he would be okay – we trust the school staff, and his usual night carers travelled with him to be there if he woke – but it was still strange. Not because we were away from him – we have often left him with family or carers. But because he was away from us, which is unusual.
There is an expectation of linearity in childhood. Babies are expected to reach developmental milestones and then continue to tick life stages off the list: walking, talking, starting school, being left at other people’s houses, riding a bike, sleepovers, school trips… Through these stages there’s a distancing of the child from their parent – probably not entirely smoothly (my children often pull away from me for a bit and then return close for a while, before pulling away again) but there is a broad direction of travel. They become more independent both physically (Max no longer needs me to tie his shoelaces) and mentally (Molly will take what her teacher has told her to be true over anything I say). If children have siblings there is an expectation that they are like a little chronological train – the first child makes their way along the track and others chug along behind.
For Ben the path is less linear – in some ways he is right on that track, wanting to watch 12 Certificate Marvel movies rather than the more gentle films I encourage, preferring to listen in on adult conversations than be at the bottom of the garden with his brother and sister, and learning from and communicating with teachers, carers and TV programs as much he does as with me and James. But in other ways, particularly physical, Max overtook him a long time ago and there are ways in which Ben will always be dependent on me and James (or other adults) to help him.
Time, and our family’s passage through it, is not progressive in the way that I had expected. I entered into parenting expecting linear development of my children but it won’t be like that. Ben entering his teens will have no effect on his ability to walk away from me, and yet he is becoming more mature and bursting out of his unadjusted wheelchair. The ways in which I am his mother are in some ways completely different to when he was little, and in some ways (feeding, dressing) exactly the same, so being his mother concertinas time in a way that feels, as Ellen Samuels has said, like time travel.
Ellen Samuel’s essay, Six Ways of Looking at Crip Time, talks about the ways in which time shifts or stretches when you are disabled. It’s a brilliant essay that I would recommend reading – an eloquent insight into how disability affects so many aspects of life beyond the solely physical.
From the essay: ‘Crip time is time travel… Some of us contend with the impairments of old age while still young; some of us are treated like children no matter how old we get. The medical language of illness tries to reimpose the linear, speaking in terms of the chronic, the progressive, and the terminal, of relapses and stages. But we who occupy the bodies of crip time know that we are never linear, and we rage silently – or not so silently – at the calm straightforwardness of those who live in the sheltered space of normative time.’
This made me think about the ways that being Ben’s mother doesn’t conform to the linear path I had been told to expect, because he is disabled. Being Ben’s mother is a process of undoing assumptions, and it’s near-constant work because the world tells us that the right way is chronological and cumulative, and that these things indicate progress. At the beginning, having a child who didn’t do things in the order others did was disorientating. It’s not any more.
Ben will lead the way for Max in some ways (he already has a smartphone, as Max reminds me near daily), and in others he won’t. He will go on school trips, but people will still ask us if he goes to school. He will continue to grow and need ever larger clothes, yet sometimes people will speak to him as if he is a baby. The issue isn’t with Ben, it’s with the ways some people struggle to compute his difference. I can get my head around it, and have, but we are continually butting up against other people who are confused by Ben’s developmental time travel, and express it. I can’t know what that feels like for Ben, but it is annoying as his parent.
Reference: Six Ways of Looking at Crip Time by Ellen Samuels, in Disability Visibility: First Person Stories From the Twenty-First Century edited by Alice Wong.
My son, Ben, is 11 and my approach to his disability has changed a lot since he was little. I knew very little about disabled people when he was born and my experience of being his mother has been a rapid education in the issues surrounding disability. If I had known then what I know now, I would have done things differently and I would have found it helpful to have read stories of other parents with similar experiences.
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!’