In May 2003, I gave a talk to the Annual Conference of the ACH Palliative Care Forum on the sibling experience. The text of the talk is reproduced here for the use of professionals working with siblings. If you wish to use portions of the talk, please contact me for permission.
Introduction | Negative Aspects | Positive Aspects | Needs
This talk aims to give the audience an understanding of the viewpoint and experiences of siblings. It will cover both the positive and negative consequences and issues which are experienced by siblings of disabled children. It will also consider the needs of siblings and how these can be effectively addressed. Throughout the talk, the issues and points raised will be illustrated by examples from the speaker's experience as a sibling.
I was two when my brother Tim was born. Initially, nobody realised that there was anything wrong with him. But it soon became clear that he had severe epilepsy. Later he would be diagnosed with severe asthma, multiple learning difficulties and a variety of other problems. He has never had a specific diagnosis, so his prognosis is also unknown.
Until Tim was about five, we had no proper respite, having been thrown out of all the local facilities because they couldn't cope. The last one was our local adult hospice. My mum went in and trained all their staff for a week, only for them to turn round and throw us out. Luckily, the sister had read about Martin House, and suggested that we try there. It was a lifeline for the whole family. Tim got the care and love he needed, my parents could catch up on sleep, and I got them to myself. And we all had the opportunity to chat to the staff and other families who understood what we were going through.
When Derian House opened, we sadly had to say goodbye to our friends at Martin House. Martin House was over 2 hours drive from our home, and Derian was so much closer that it made no sense not to move. We had many happy years there until Tim, now an adult, started moving into residential care.
Isolation | Loss of childhood | Negative emotions | Insensitivity from others
One of the best examples of the isolation I felt as a child is coming back to school after the summer holidays. Everybody, including the teachers, would be full of stories about the exotic and exciting places they'd been. And I'd been to Wales. If I was lucky. Because taking Tim on holiday was and is quite an undertaking. Going abroad with him is simply out of the question, and even in this country it tended to be quite fraught, to be honest. That's not to say that I didn't have some lovely holidays as a child, its just that in the cold light of the first day of term, they just didn't stand up to Disneyland, Corfu and Spain.
It's hard to explain this one, but I do feel that I missed out on aspects of my childhood. When Tim was little, he was in hospital more that he was at home, and my mum always had to stay in with him. So most days after school were visiting him. I soon got bored of the playroom, so I helped the nurses make the hospital beds. I was the only kid with hospital corners on her doll's cot! I think it was really brought home to me how much I'd missed when I went away for a weekend with a siblings group. We were all about 14 but we acted like 7-year olds, playing hide-and-seek and silly practical jokes. I think we were all trying to recover a bit of the innocence we'd lost.
Obviously, having a disabled sibling is a stressful experience. It builds up over time and sort of eats at you. Thing is, it's such a slow process that you don't notice until things are really bad. For me, I think the last straw was the stress of leaving home and starting again at university. But it wasn't until things got to the point that I was afraid that I might harm myself that I really accepted there was a problem. I was on antidepressants for three years, and I still get low patches, but I recognise and deal with them now rather than trying to suppress them.
As a child, I would often get angry at my brother: for taking up all my parent's time, for being sick, for generally screwing my life up! The problem was that I would then feel guilty, as it wasn't his fault - he didn't ask to be ill, and he probably hated it more than me. But then the guilt would turn into anger for making me feel guilty. I'd get caught in a vicious cycle of anger and guilt, that would usually end in floods of tears that I couldn't explain to an adult because it was totally irrational. It took me a long time to understand that the anger was a normal way of coping, and that it wasn't something to feel guilty about.
Whenever I tell someone about Tim, there are two phrases I dread. The first is less common now, and annoys me less, too, but it used to really get my back up as a kid. It always came from adults: "Oh it must be terrible for your parents". Yeah, well it isn't a bed of roses for me either! There was always an implication that because you were a child, you didn't matter, or you didn't have feelings. I always felt like they were suggesting that it didn't affect me at all.
The other one has become more common as I've grown up, and you can spot it a mile off. It always starts with "I know this must sound callous, but…" Yes, it does; and admitting it doesn't make it any less so. It's usually followed by a comment along the lines of "wouldn't it have been better if he'd died", or "don't you sometimes wish he'd died" or the really thoughtless "I'd have had an abortion". I always wonder whether they think they're being helpful by bringing a difficult subject into the open, or whether they're just so insensitive that they have no idea that I might find it offensive. I'm afraid that nothing short of saving my life would get someone off that blacklist.
TopIndependence | Maturity | Tolerance | Knowledge | Positive experiences
You could say I chose to be independent as a child. I could have put up with my dad doing all the household duties when mum was with Tim in hospital. But there are only so many fish-finger sandwiches and pink school blouses you can stand! But it stood me in very good stead as I grew up. My parents didn't have the time to nag me to do my homework, so either I did it myself or I took the rap. I learnt to manage my time; so at school and university, I missed out on that vital student experience - the 4am essay crisis. I think I'll survive.
This isn't quite the same as independence, but it stems from a similar background. Because I had a quite lot of responsibility at home, I think I could relate to adults at quite a young age. I'm not sure this was always a good thing from their point of view - an intelligently argued question or complaint coming from a 12-year old is probably quite intimidating. I drew on my parents' vast experience of writing complaint letters to get a safer minibus to schools, and even once wrote to Tony Blair. That caused a bit of trouble as I didn't tell anyone - not expecting anything to happen. When something actually did, of course no-one could work out who'd sent the letter. I'd just started university, so I didn't realise until everyone was thoroughly perplexed.
Personally, I think that a lot of prejudice and discrimination is simply either misinformation or fear of the unknown. Having Tim has brought me into contact with many people, of all races and religions and with all sorts of disabilities. And he has a wonderful knack of bringing out the best in people. We used to joke that it doesn't matter which religion's right - Tim'll be OK because there'll be someone out there is praying for him.
One of the ways I've coped with having Tim is to find out all I can about what he has and how to help him. So I can use all of his equipment and deal with any of the 'wobblers' he might throw. So suction machines, nebulisers, oxygen, gastrostomies and epilepsy are all second nature to me now. This has all come in useful since I became a first aider. It's a way for me to use the knowledge I've got from Tim in a positive way, and it's also introduced me to many new friends.
I had many positive experiences because of Tim. We've been invited to all sorts of charity events, gone up in helicopters and met lots of celebrities. I wouldn't have experienced any of this without him. And because he looks so cute, people stop and talk to him. I remember one charity function where there was a small demo sensory room in one of the tents. Tim loves these (who doesn't?), so I sat with him in it while Mum went round the rest of the event. It was in Blackpool, and they'd managed to pull in virtually every famous person performing there to come and see the kids. They all had 'minders', who showed them round and made sure they didn't get monopolised. Pretty soon, the minders were bringing everyone round to see Tim: there was the feel-good factor for talking to me and him, and everyone love the sensory equipment.
But Tim has also brought a vast amount of love into my life. He loves unconditionally, asking only for you to love him back. He may be a pain sometimes, but I wouldn't change him for the world.
TopIdentity | Support | Honesty | Respect
When you're a sibling, you tend to be identified as such, so I've always been 'Tim's sister'. It can be difficult to feel like an individual, rather than an extension of Tim. I sometimes felt that I had to do well academically because Tim couldn't, rather than because I was capable and should make the most of my talents. At a school disco, when I started secondary school, I felt guilty for enjoying myself because it was exactly the sort of thing that he enjoys, but wasn't there. I think it's useful for siblings to develop their own interests, so that there are things they can proud of for themselves, and so that they can develop their own identity, separate from the sibling. It also helps if people remember your name - there's nothing more demoralising than someone remembering everything about Tim, but not even remembering that you existed.
There are many different ways that different people can offer support. Often, the best support is simply knowing that there's someone you can turn to when you need them. I've been blessed with wonderful friends throughout my life who've supported me in crises. Professionals can often help in other ways, with information and understanding in difficult situations. When Tim was severely ill a few years ago in Derian, I came back from university in the middle of term to be with him. I felt that I ought to do some work, but I didn't want to leave him, so the care team got me a table and chair in his room to work at. I don't think anyone actually thought I'd get anything done, and they were right, but just being able to get my books out, even if I didn't do anything, stopped me worrying about my work, so it eased the pressure.
A third form of support is siblings groups. I've been involved in two of these, both run by Barnardo's. We went on trips, weekends away, even redecorated a cellar. There was never any formal "lets talk about being siblings", but we did. Just knowing that these people were going through the same things as you meant we could voice opinions and feelings that we couldn't talk to our friends about because they just wouldn't understand. And, like I said earlier, we had a chance to be kids, run riot and generally have a great time.
My parents were always totally honest with me when I asked questions about Tim. I had access to all the information I wanted, when I wanted it. This meant that I never had to listen at doors to find things out, and end up with half the story. Knowing the truth is always better than not knowing at all - however bad the truth may be, it's nowhere near as bad as what your imagination is dreaming up. Sometimes, an honest answer might have to be "I don't know" - but at least it's an answer. Even "I don't know" can be a good thing - it means that the horror you've imagined isn't certain, and that is some comfort.
I can best illustrate the need for respect with two examples. The first, when I have been treated with respect. It was at a hospice, when I was keeping an eye on Tim while my parents were in the garden. He had an epileptic fit, which is not uncommon for him, but needs to be noted so that he can be treated if they get too frequent, so I asked one of the care team for help. Rather than just taking over the situation, they asked me about the fit, whether it was abnormal for him, and noted the time and duration. I was treated in the same way that they would treat my parents; I was only about nine.
The second example is where I wasn't respected. This was much later, when I was about fourteen, and Tim was in hospital. The consultant was doing his ward round, and I wanted to hear what he said so that I would know what was going on. I might add that my parents were quite happy for me to do this. The consultant was not. He told me to "go outside while I talk to your parents" and then shut the cubicle curtains with me outside them. What really got me was the pointlessness of it, it wasn't like the curtains were soundproofed - I could hear every word. But I was excluded because I wasn't old enough to be there.
I've tried to give you a flavour of what it's like to be a sibling - the good points and the bad points, as well as what you might be able to do to support siblings. I just want to emphasise that it's not all bad, there are some very positive things that can come out of being a sibling, and personally, I wouldn't change Tim for the world.
Last modified 07/08/2003
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