A Sibling Perspective: Interview with Fiona

My son, Ben, is 11 and my approach to his disability has changed a lot since he was little. I knew very little about disabled people when he was born and my experience of being his mother has been a rapid education in the issues surrounding disability. If I had known then what I know now, I would have done things differently and I would have found it helpful to have read stories of other people with similar experiences.

This is my latest interview in an occasional series – usually A Parent Perspective, but this time A Sibling Perspective – with Fiona, who lives with her disabled brother, Ewan. I found it so interesting to hear her thoughts about growing up with her brother.



Could you describe your family?

My mum and dad have three children – I’m the oldest, then my sister, Kirsty, then Ewan who is three years younger than me and is disabled. We grew up in Sussex and then moved to Scotland when Ewan left school to a house that is designed around Ewan’s needs. Ewan and I have always been incredibly close. My parents were Ewan’s carers but they’re not getting any younger and I wanted to be involved so now I am his main carer. My parents, Ewan, my husband Dom and I all live together which means there’s a lot of bickering because we all have strong opinions! But it works well for Ewan because he has me and my husband around and we can go out and do things very naturally. We do have paid carers as well.

Could describe Ewan and what he likes doing?

Ewan’s very cheeky. He loves to entertain us by doing something daft or mischievous. We both work at a candle shop, which is a social enterprise designed for people with disabilities. He and I are joint workshop leaders which I think Ewan really enjoys. We’re lucky to have met a nice group of friends, both with and without disabilities, and we go out – evenings at the pub, lunches, an art class. Ewan’s quite social and loves spending time with my husband, Dom.

Ewan is 36. We describe him as being disabled – having a learning disability. He needs a lot of support though he can do lots himself. He uses a wheelchair and doesn’t speak but he has fantastic communication. Ewan uses Makaton sign language, or at least his version of it! He also has some vocalisations – he’ll make sounds for yes, no, and some names that we recognise. He can get anxious in some situations and find them challenging.

How does Ewan’s disability affect his day to day life? What are the things that you, as a family, plan around?

At home he’s just Ewan. If we’re planning a day out sometimes it can be difficult to know what we’ll be able to do, what he’ll find interesting, whether we’ll be able to get in the building, whether there will be a Changing Place. From his point of view, his anxiety affects him. If Ewan’s worried or excited about something he has a lot of spasms in his arm, and that can cause pain.

Do you remember as a child realising that Ewan was different to you and your sister?

We didn’t know when Ewan born that he was disabled. Because he’s the youngest I think my mum realised that he wasn’t doing things that my sister and I had done. I remember being told that Ewan was blind and ‘handicapped’ (as it was in those days), and then he didn’t learn to walk and talk. He was obviously different but I don’t remember it really being much of an issue. I’ve always been very close to Ewan and I’m very proud of him, so people would get told about him all the time! I’ve never experienced anything negative about him being my brother.

To say that my parents weren’t fazed by it sounds ridiculous, but that’s the way it came across. Obviously he needed different things, different care, but it was always more of a practical thing, and mum and dad were very aware of trying to treat us all the same.

Did you choose to be Ewan’s carer?

Yes, I chose it because I feel that it works. It doesn’t really feel like I’m his carer except for the obvious things where we help him physically. It’s just our relationship and it’s fun. The hardest thing for me is stepping back and entrusting somebody else with the role because it can be difficult for other people to know how much independence to give Ewan, for example, and they can be tempted to make a choice for on his behalf or perhaps take over an activity.

Was there a natural progression over time as you took over from your parents?

When my husband and I moved to Scotland we allocated which days each of us would do Ewan’s care and I always wanted more days so we could go and do fun things. Now I support Ewan Monday to Friday and my parents do it at the weekends, though since we live with each other there’s overlap.

My parents know a lot more than I do about Ewan’s medical history and so they are more involved with that side of his care. Ewan used to have more health worries but thankfully since his epilepsy has been under control he’s been better. I am starting to take him to important hospital appointments on my own.

As a familywe bicker a lot, but not over Ewan’s care. I say I don’t want other people worrying about us because of Ewan, but I was worried about my parents and whether they were coping with all the care that they were doing before we moved up here. And now, they worry about me. I think that’s what families do!

What has worked particularly well for Ewan at particular stages of his life?

From the age of six he went to a brilliant school in Sussex. The whole school was geared towards their students, all of whom had very complex disabilities. They did everything, like scout camp for example. Ewan had the opportunity to do so many things, learned loads, and he enjoyed it. He’s not really had the same opportunities since he left school because not everywhere has the facilities.

When we moved to Scotland there were a few disabled children just leaving the high school and there was nothing here aimed at people with disabilities, which is why things like the candle shop came about. I’m talking on Ewan’s behalf here, but I think we’ve been really lucky. It feels like we’ve been in the right place at the right time.

Are there things that have been particularly challenging either for him, or for you as a family?

Ewan does always seem to be quite happy and he doesn’t seem to worry if he can’t do something. I think we lived in a bit of a false sense of security for a long time, thinking that he had everything he needed at home. It’s only since finding the first Changing Places toilet that the penny dropped for me, and I wondered why we were only just discovering them. Noticing how inaccessible places are makes me angry and frustrated. I think we’ve been incredibly lucky compared to many other people, in terms of support and services. We have been in the right place at the right time.

I think that no one talks about the benefits of having a disabled sibling…

I agree, or they do but it’s that ‘inspiring’ thing. I guess it’s hard to appreciate unless it is your experience. I know friends who have had harder times that us – we’re very lucky that Ewan’s health is good. If he didn’t sleep or needed a lot of medical attention our experiences would be different. I feel like we’re very lucky. Sometimes I don’t understand how other people don’t get it and don’t see the world like I do, and then I remember that they’re not all as fortunate as I am.

Do you have any advice for other siblings or for parents of disabled children or adults?

I’m not really in a position to give advice, but perhaps it would be: don’t compare. I’m not a parent but I think we’re all individuals. We’re all going to be the people that we’re meant to be, irrespective of disability. You can’t possibly compare one person to another, or the speed at which they’re doing something. I think my parents knew Ewan was going to be different so didn’t compare or worry about milestones.

I’ve spoken to my mum about it and she was upset when she first heard Ewan’s diagnosis but that’s the only sad thing I’ve ever heard. I sometimes feel like families are beating themselves up for not doing enough therapy with their children, that they think they’re not doing the best by their child, and that’s quite hard to watch. I think what will be will be.

You can find Fiona on Instagram @ewieandfi and on Twitter @fmmchiarini

Different kids, different kinds of walking

If, like us, you take the view that your child’s disability is part of him and try your hardest not to be negative about it in front of him, how far do you take it?

Molly has just started walking. She’s 13 months and since working out how to take a few steps two weeks ago, she has been practising at every opportunity. She has the typical waddle of a baby and is totally unfazed by dropping to her bum every so often. It’s utterly joyful to watch. If you’re feeling at all depressed by the state of the world, I would recommend spending some time watching a sweet one-year-old walk around like a very tiny drunk.

It feels like a privilege to watch a baby develop these skills and like a small miracle when they keep their balance and toddle off. We, more than most, appreciate the wonder of a baby learning to walk.

And because we are all so amazed we have spent a lot of time talking about it. Visitors comment on it. It can all be a bit of a Molly love-in.

I started to feel a bit uncomfortable about it. How does Ben feel about Molly learning to walk on her own? Is he sad that she is doing something he can’t? When we congratulate Molly does he hear an implicit criticism of him not walking? Was he not really thinking about it much until we all stood around going on and on about how brilliant she was?

I spent a day or two trying not to talk too much about Molly’s walking. Acting as if it was no big deal. Then Max asked me if I was better at maths than him, and I wondered for a moment if I should soften the blow. But then I decided to tell him yes, I was. And I said I’m definitely better at maths than James. I do have an A Level in maths after all and neither of them do.

It struck me that we can’t spend the rest of our lives not being honest about who is good at what, and what one of us can do that the other can’t do as well. Some of our kids will be good at remembering obscure cricketers (James’s genes), some will be good at chemistry (my genes). Pretty unlikely one of them will be talented at everything – so they will all have to experience that irritating feeling of knowing your sibling is better than you at something. In Ben’s case, the nature of his disability is such that he will do lots of amazing things, but some physical skills will constantly elude him. Max and Molly will do things that he can’t.

Obviously, accepting that fact doesn’t mean we need to ask questions like, ‘Isn’t it a shame that Ben can’t walk along walls like Max can?’ (this did actually happen, achieving nothing except drawing everyone’s attention to the disadvantages of being disabled and tainting an otherwise pleasant walk).

I think we have to avoid this kind of direct comparison with all of our children (tricky with Max’s constant questions comparing me to James, James to Superman, Superman to Spiderman, etc etc). Ben won’t walk unaided, but his school annual review lists ‘walking’ (with a supportive frame) under the list of What Ben Likes. Each child is on their own track and we should only compare them against their progress on that track.

Ultimately, I need to chill out and enjoy watching a small child negotiate going downstairs backwards and a four-year-old learn to write. These gross and fine motor skills are easy for parents to take for granted. Do not. See them for the incredible feats of co-ordination that they are. Hold them dear and cherish each milestone.

As a postscript that demonstrates that being an ally to my disabled child is still very much a work in progress, I should mention that I suddenly realised I had written this whole post without asking Ben what he actually thought. So I sat down with him and his eyegaze computer, and modelled what I thought:

‘Molly – walk – great’

I asked him what he thought. He chose:

‘I don’t want to do it’ … ‘Good’

He then got frustrated that I was delaying him listening to The Faraway Tree.

Fair response. Jog on, Mummy, stop asking me stupid questions about my sister walking…

Ben is 7!

Ben is seven! We celebrated with, amongst other things, an egg-free chocolate cake that I whizzed up in our blender and gave to Ben through his feeding tube.

 

With every passing year I sound a bit more like my mum: “I can’t believe you’re seven years old! I remember when you were just a baby!” But it’s true – I am genuinely surprised that we have been parents for seven years and that Ben is so big and tall.

As with all recent birthdays, James made a Ben-themed video of the past year and we watched it with our family, projected on to the wall. I would recommend this as a way not so much of celebrating the child’s birthday, though Ben and Max enjoy seeing themselves, but more as a way of congratulating oneself on another year of parenting. It is heartening to see how much children have changed and grown over the year, how much you have done with them, and ultimately how justified you are in feeling so tired.

The other thing that we realise when we (James) make these videos is that there is always way too much material. We have done too much fun stuff and taken too many photos and videos to fit into one short film. It makes obvious that Ben is living a full life, with variety and fun, surrounded by loving family.

 

 

Just after Ben’s birthday he had an appointment at our local rehabilitation centre where wheelchair services, assistive technology and other helpful services are based. There are always all sorts of disabled people coming in and out for appointments. I was sitting in reception with Ben and Molly, waiting to be called. Molly was a bit grumpy because she hadn’t yet had her morning bottle of milk, Ben was happy watching a screen showing footage from four security cameras. A lady in a wheelchair was pushed close to us (and I have written that in the passive deliberately, because the person pushing didn’t ask her where she wanted to wait). She was an older lady, I would guess in her seventies, immaculately dressed and made up. She smiled at us and after a few moments said (as is common):

“You’ve got your hands full!”

I smiled and we had a brief chat about how old the kids were, how cute Molly was, how much she liked milk. Then the lady asked, as she looked at Ben:

“Is he able to go to school?”

“Of course,” I said. “He goes to a brilliant school which he loves, don’t you Ben. We’re just here for an appointment.”

I could see the pity-look appearing so I was even more positive than normal about both Ben and his school. But as she was leaving she said:

“It’s so hard for these handicapped children. So hard for their families. I feel so sorry for them.”

It was one of those times when I felt like I didn’t have the words to be able to explain to her what our world is like, what Ben’s life is like, how we (try to) treat him. I have no idea how or why she uses a wheelchair, or how old she was when she first used it, but clearly she has lived a different experience.

It’s impossible in passing conversations like this to say all I want to, but later I felt so sad that she assumed Ben didn’t go to school, that his life is somehow unbearably hard, that it’s okay to talk about him like that right in front of him. Clearly being disabled in some way doesn’t automatically educate you in how to treat disabled kids in 2016 (or 2017).

I don’t want to minimise Ben’s challenges – loads of things are tough for him, almost nothing comes easily, and much is really unfair. And as a family we sometimes struggle when Ben’s disability makes things more complicated for all of us. But right now, as a seven year old boy, Ben is having a good life most of the time (and really, which child is having a good life all of the time? I mean every kid has to tidy up or eat Brussels sprouts or go home some of the time). He has loads of fun. He laughs most days. He is loved. He is learning. He is thriving.

By way of illustration, between his sixth and seventh birthdays Ben:

  • Had a baby sister: tolerated Molly’s wailing, put up with a third of our attention rather than half, learnt to deal with her grabbing onto his legs and pulling his hair. And then got a new baby cousin, Ralph, who also sometimes likes a bit of a wail.

 

  • Learnt to cycle his trike on his own: whizzed round in circles, racing Max and being unbelievably pleased with himself. He is still working on learning how to steer.
  • Made really noticeable progress with communication: starting to eyepoint using his communication book to tell us things, more reliably telling us yes and no.
  • Made huge progress on using his eyegaze computer: using it almost every day, knowing exactly what he wants to do, reliably choosing stories and then navigating through them like a pro, using communication software to create messages that were totally appropriate to the moment.
  • Went on holiday to Cornwall and France: first flight for three years, loads of swimming and beach time, hanging out with family and friends, getting tanned (and on one unfortunate occasion burned), getting a new passport.

 

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  • So many jokes with Max. So many lovely moments between these two boys.

 

 

  • Started staying at a children’s hospice for the occasional night, didn’t seem to be traumatised.
  • Moved house, again. Visited the building site to review progress and try out his new lift. Before he is eight he should have managed yet another move, his sixth since he was born.

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  • Began to be hoisted (rather than manually lifted) for most transfers between chairs and beds: coped much better with this than his mum.
  • Listened to lots and lots of audiobooks: his bluetooth speaker and ipod have become essentials wherever Ben goes, and there’s therefore been less screen time, developed a love for the books of David Walliams (except the highly emotional ending of Gangsta Granny) and late in the year Harry Potter.
  • Finished his first year at a new school: totally smashed it, participated in a whole school play in his walker, another year of loving learning, fascinated by the Great Fire of London.

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  • Was increasingly contented: Ben has spent the last year less fractious and generally happier. We spend less time flicking though films to find the one he is happy to watch, less energy trying to entertain him in public places so we can finish our lunch. This is probably connected to us having more (paid) help, and Ben getting older and more mature, helped – we think – by his surgery in 2015. As long as we explain what’s what is going on or is about to happen, Ben is noticeably more able to deal with unfamiliar or demanding environments. Long may it continue.

As we celebrate another year of Ben being our son, I am so very proud of this boy (and still so very sad that seven years ago he was still in hospital). He is such a joy to us all, so filled with patience and humour and determination. Happy New Year everyone – let’s all hope we come across more Bens, less pity and more positivity in 2017.

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Sister Molly

Ben and Max’s sister, Molly, is four weeks old. We have survived a month with three children, something which feels like no mean feat.

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That seemed unlikely after our first family outing one week in, when we made it just 100m from our front door before Max broke the rules about how far ahead he was allowed to go on his bike, we shouted, he started crying, Ben started crying because Max was crying, and we all went home. Since then we have managed a family swimming trip and some less eventful local walks. So we might actually be capable of leaving the house as a family of five.

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Both boys have been unbelievably sweet with Molly, and very tolerant of the disruption and imposition involved in having a new-born sister. Through a combination of James having a month off work, numerous carers and family members helping us out, and a baby that sleeps a lot, we have been able to keep things as routine as we can. Ben has shown once again that he can cope with a lot of change and take it in his stride, while Max has been demonstrating his capacity to be both a kind big and little brother. We have all had a lot on, but we’re doing okay

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We do not approach birth lightly. Ben’s disability is because of problems during his birth and we therefore know too much about the risks of things going wrong and having lifelong implications. Max was ill immediately following his birth and had to be admitted to NICU. We sort of assumed that our third baby would end up in NICU, even though a neonatal consultant took the time to explain to us how (very) likely it was that we would have a totally healthy baby.

One of the people who really understood our concerns about the birth of this baby was the obstetrician who we saw throughout this pregnancy and who had previously delivered Max. She is someone we have huge respect for, whose judgement we trust, and who had successfully guided us through my second pregnancy when we were at our most anxious about having another child.

This time we knew in advance that she would not be able to deliver the baby because the elective caesarean was booked during the Christmas period when she would be on holiday. Another obstetrician would do it, it would be fine, we told ourselves. As we prepared on the morning of the birth, getting in to gowns and talking photos of my puffy face, we were calm but nervous. And then she popped her head round the curtain to say hi. Dressed in jeans and tshirt, she was officially on holiday but had come in specifically to do my caesarean section.

That, there, is an emotional moment: the joy of knowing we were in her hands (literally in my case), that our baby had the best possible chance of therefore being fine, that someone so thoroughly understood how difficult this all was for us and had come into work especially.

And then Molly was born, screaming before she was out of my womb, to be immediately declared, with a thumbs up, totally and utterly healthy by the neonatologist we had demanded be on hand to check. No resuscitation, no breathing difficulties, no-one at all worried about anything. She breastfed immediately and, following the facilitation of the obstetrician who knows we spend too much time in hospitals, we were able to go home the following day. You would not believe how uninterested everyone is in a healthy newborn baby – barely any observations, no-one came to check her overnight. If you hadn’t had experiences like ours you would have no idea of the anxiety and stress lurking just across the corridor in the neonatal unit.

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We have now had four weeks of admiring and nurturing little Molly and she is a delight. Third time lucky, we had a baby who didn’t need a canula in their head, or a tube in their nose. She immediately breastfed and sleeps like a champion (just not always at night-time). We take none of this for granted – it is luck of the draw whether you have a baby that does the basics easily or not.

We have not lost and will not lose sight of what a privilege it is to have her here with us, healthy and thriving. Nor what a delight it is to share this baby girl with these boys of mine. We are all lucky.

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