My brother Richard is two years younger than me, and has severe physical and learning disabilities. He presents as if he has Cri du chat syndrome, but he is much more aggressive and hyperactive with significant behavioural difficulties. He can’t talk, he needs 24 hour care and he has a lot of health problems associated with his condition.
We had another brother and sister who are 13 years older than me. They moved out of the family home when we were young, so it was mostly just me and Richard growing up together. Our elder brother died last month. That was a bit strange; he wasn’t the sibling I’d prepared myself to lose. Our parents had a business, and this worked around Richard and his needs.
Growing up with Richard was stressful
Richard screams constantly and bangs and shouts and throws things and smashes things. We used sign language and survived on maybe 100 signs as a family. It was very difficult – there are so many things you can’t express and it was hard for us all as a family.
I became very detached from my personal possessions. My stuff got broken a lot and you learn not to care. You learn to be totally comfortable with the idea that your stuff may be broken at any time and you just have to deal with it.
I was outside of the family
Day-to-day, I didn’t help much with Richard’s care and I was broadly left to my own devices. I spent a lot of time away from people reading or I was taken to other activities like judo and cadets. I used to walk into town as a teenager rather than get the bus. It took about an hour and a half, but it was more time out of the house.
Mealtimes were difficult and I still find them stressful now. I used to go to school with Richard’s weetabix in my hair. I think my parents protected me to a large degree from the overall effects. I was not particularly engaged in Richard’s care. I dealt with his computer gaming. I used to put cheat codes in Sonic 2 for him. I still do, 28 years later.
It amazes me how much I was left to get away with as a child. I was definitely never pushed and there was never a desire to see me achieve. There was no focus on exams or learning.
Realising something was different about us
It wasn’t until I was in my early 30s that I looked back and realised there had been emotional effects on me. We had some very different experiences as a family.
I have surprisingly few memories of my early childhood to early teenage years.
I have a really strong memory of being 17 and at a friend’s house. His brother wandered in and they had a conversation and then he wandered off. That was weird. What was this? It was something that never happened between me and Richard.
I have some positive memories. I remember going to Disneyland. Richard’s disability meant we didn’t have to queue for rides. It was the one day when everything was on our side. People were staring at us, and my Mum found that hard. I remember saying “They’ve always stared mum, it’s just that this time it’s because we’re ahead”. We used to get stared at all the time, and I never realised this was odd until I was older.
I moved out first – I went to uni. While I was at uni, Richard moved out to college. I moved back in periodically in between jobs.
Spending time together as adults
I’m attempting to be generally more involved with Richard’s care. I own the house Richard lives in and he pays me rent. He’s got a staff team and I like to think they have a good relationship. I go and visit, or he comes to us to stay, about 2 – 4 times a year. It’s nice to feel like he can be part of the family, and part of my family (I have a partner and two small children now). We enjoy playing on the computer and he usually has a list of things he wants me to fix. He likes Comicon. We might go bowling or to the arcade. It’s about having the positive time together.
Richard doesn’t get on with my 2 year-old that well at the moment (she doesn’t like my attention being split!). They were nice together before it was an issue and I assume it will improve. I’ve got a really nice photo of my daughter age one and Richard sharing something with her.
Talking to my parents about Richard’s care can be tough. I’m becoming increasingly close with my older sister – she is my sibling ally. We have to gang up on our parents at times.
It’s hard being a sibling – I can’t think of any positives
It is hard being a sibling. I’m constantly on edge. I worry that one of our parents might die. Or that the Tories might cut his support. Richard’s health is so poor. Periodically, he’s nearly dying. All of it – all the worries – it’s always in the back of your mind, it never goes away.
I’m struggling with the positives. Anything else I could say would sound like a quote on Instagram. The Disneyland thing is good.
I have found sibling support groups helpful
I go to a sibling support group periodically. It’s a safe circle of people who understand and you just gently chat about a particular problem you’re having. And we laugh about a few bits, it feels useful, it feels like we’re just chatting.
Even if you don’t say anything, I often find there’s things unlocking in my head. There were a number of things that I didn’t realise were a problem for me until I came to the group. I was not a big participant in the conversation, but it was really good to be with a set of people that understood. You can talk about all the things that you cannot google for.
I would advise other siblings going to a group. Because it’s otherwise extremely rare to find someone who understands. Social workers don’t get it, therapists don’t get it. Explaining our brothers and sisters to non-siblings is so hard and you know you’re going to do it wrong!! It’s a difficult concept and experience to get across. When you meet other siblings, you don’t have to explain that. And not having to explain that is just so freeing.
There aren’t as many sibling blogs and social media accounts compared with parent ones. Parents of special needs children may feel more able to blog about their own child – they are raising them, and they may feel that they have ownership of their joint story. But a sibling doesn’t necessarily feel they have that right to talk about their brother or sister publicly. And for many siblings, being honest about their experiences would also involve sharing some frustrating conversations with parents!!
I want other siblings to know that we are all out there. That just because siblings aren’t reading as much about themselves, that just because there aren’t as many brother and sister social media accounts as there are parent-child ones… that doesn’t mean their experiences don’t exist. We matter.