Siblings - what's the best thing and the hardest thing?

[frances_is_a_sibling]

Dear Siblings,

I thought it would be a great to try out a themed sibling discussion on here. If it takes off, I might try posting one once a month. I’ll be honest, I feel really apprehensive about posting online. But I also know that when I’ve written about my own sibling experiences, and when I’ve read about others – it has really helped.

I’m going to tag some siblings from other sibling threads - @bmuggers @carol-ann.bond @Matt_Humphrey @richard.deniese @rob.86 @chissylou @Alexg @Alans_sis @mollymay @Beautifulsister (I can only tag up to 10, sorry) and would welcome any other siblings reading this to join the discussion.

So deep breath - first topic – what’s the best thing about being a sibling and what’s the hardest thing? For me – best thing – it’s made me a really practical person, I can be good at problem solving, quite empathetic and resilient. Hardest thing – it can be isolating. No one else gets what it’s like apart from other siblings, and the role of siblings isn’t acknowledged enough in everyday society.

What about you? Best thing/hardest thing?

Thanks for taking part.

Frances

[Alexg]

Hi Frances,

I think the experience of siblings varies quite a bit depending on the age gap. From previous conversations I wonder whether sometimes it is harder growing up for people who are younger than their sibling with a learning disability or where people are very close in age. I am quite a few years older than my sister and my experiences have been almost all positive.

The best thing is simply having her in my life. She is the most lovely person - she is great company - funny, warm and incredibly kind. I don’t mean that in terms of the usual stereotype of people with Downs Syndrome being loving and musical (!) simply she is one of my very favourite people and I am so proud she is my sister.

On the other side, the only negative is the worry that anyone might do anything to hurt her or her husband. It can be hard not to be over-protective!

Hope that helps

Alex

[chissylou]

Hey
I only have one brother so have no other experience and accordingly no idea of ‘normal’ when it comes to siblings. I have plenty of friends with non disabled siblings who have problems and issues with them. Myself, I don’t have any issues with my brother. Which brings me to the best thing. He is just this lovely soul who gives unconditional love and whose unique world view always cheers me up and makes me laugh.
Hardest thing. His communication limitations mean that I sometimes feel like it is not possible to ever fully know him. But I know him as well as it is possible to. Also worrying about him is a problem. Worrying about what happens to him when my parents and I die.
x

[frances_is_a_sibling]

Hi @Alexg and @chissylou thanks for commenting, it’s really lovely to hear from you and talk about this and I appreciate you sharing such personal experiences.

@Alexg – your sister sounds awesome what a lovely lass. I hear what you’re saying about feeling a bit over-protective, and I think that worry is always there in the background – it never goes away. It’s really interesting that you mention how birth order and the age gap can change a sibling’s experience – in what ways do you think it might be harder for someone who is younger than their brother or sister, or close in age?

@chissylou – I think that’s a really important thing to point out – that many typical sibling relationships will have issues. I think it can be easy for siblings to forget that, if they are having a difficult time building a reciprocal relationship with their brother or sister who has LD/autism. Really lovely to hear what unconditional love you receive from your brother – so few adults are able to do this - it sounds like he has a talent for lifting your spirits Yeah, I really hear you on communication. My brother is non-verbal and sometimes I really wish that he had a verbal language to communicate with us, tell us what he was thinking, what he wanted, what he thought about x or y. But, like you say, you know him as well as is possible to. I agree about the worry once family members die. Do you think if we had a better health and social care welfare system, that you would worry less about this?

I was reminded of this article that I read in the Guardian, a while ago. It’s from a parent – but the sentiment still resonated with me: https://www.theguardian.com/lifeandstyle/2017/jul/22/love-fear-and-victoria-sponge-why-my-sons-lost-birthday-cake-made-me-sob and I think it’s this sentiment that would resonate with a lot of siblings.

[Alexg]

Hi again,

Such an interesting subject. In terms of birth order/ how close in age people are to a disabled sibling, from talking to other people over the years, including some of my other sisters, I think it can be tougher for younger siblings or those who are closer in age.

When my sister was born I was old enough to understand why she needed more attention and not to find that hard. I think it was more difficult for some of my younger sisters who were very small themselves.

My sister with Downs Syndrome went to the same schools as the rest of us, which was great. My sister was really popular at school and whilst no-one would change that, I think the sister who was a couple of years older felt a bit overlooked in comparison.

I remember talking to someone in another family who was younger than her disabled sibling and she said she found it hard that she got less attention and struggled to understand that.

However saying all that it is so hard to generalise about any of this, and @chissylou is right that we need to be careful not to say this is all about disability, these kind of issues happen in any family.

Alex

[chissylou]

He definitely has a spirit lifting talent. People tend to like him instantly. Carers cry when they leave the job and won’t see him again.
I can imagine it must be harder with a non verbal sibling. I can’t speak to how I would deal with a differently disabled sibling.
I am two years older than my brother and already felt established when he came along. Plus I hated being babied anyway so enjoyed being put in charge of fetching nappies etc and helping with him. It played into my pre-existing personality luckily.
Re the worry I think it would be slightly less if the care system wasn’t being diminished, yes. He has a placement at the moment that works brilliantly for both him and us. It has been threatened time and again by cuts. The anxiety each time is how it would ruin his life. He loves his life and his friends. And it would mean he would have nowhere to go but a care home after we die (his placement is for his lifetime)
We have set him up as much as we can. But even in a perfect system, you worry about people bullying, abusing, hurting. This is why I don’t want kids. I don’t need anyone else to worry about.

[frances_is_a_sibling]

Hi @Alexg – thanks for saying more about this, I find it really interesting too. It sounds like it was quite a different experience for you (being able to understand more about your sister’s needs) in comparison to your sisters (who were younger and weren’t able to understand this as much at the time). I’d say I have some different experiences too, to my other sister who is closer in age to our brother. It’s great to hear what a good experience your sister with Down Syndrome had in a mainstream school and how popular she was – although yes, I can hear that your sister who was close in age to her may have felt a bit overshadowed by this. I’ve spoken to some siblings who feel like ‘joe blogs’ sister’ – rather than a person in their own right. But I agree, I’m not sure that’s always disability-specific as I’ve also spoken to siblings who have a brother or sister who is, say, competing in sport at a national level – and therefore they become ‘joe blogs’ sister’ that way too.
I think the sibling you’ve spoken to who found that receiving less attention was hard, would be not alone in that. I don’t want to generalise either, but I would say that’s a really common theme with being a sibling – a natural consequence of someone else in the family needing more care and support, often means that others have less. And I think this would happen whether the person who needed support was Mum or Dad too, e.g. a young carer for their parent.

Hi @chissylou Carers cry when they leave him!!! That says it all – what an impact your brother has on them. What a cracking guy Yes, it sounds like helping out with a new baby suited you down to the ground and probably promoted/helped along your already independent streak. Great to hear what a good placement – and life – your brother has. I can understand the anxiety every time this is threatened, you just want him to stay happy, stay safe. Yes, true – even if the system was entirely different, there’s still the worry about him being vulnerable to other people. I hear what you’re saying about not wanting children of your own because you already have enough to worry about – do you ever feel like a 3rd parent to your brother? Or would you say you still feel quite brother-sister like, but with additional worry?

[chissylou]

I feel like maybe a hybrid of a sibling and a parent. Sometimes I need to get him under control if he gets emotional or overexcited or agitated and that involves being a bit mum like. But mostly the things I do to help and support him - dress him, put his shoes on, wipe his nose, cut his food up - just feel like things I have always done as part and parcel of being a sibling.

[frances_is_a_sibling]

@chissylou Hybrid sibling and parent (parling? sibent??) - that hits the nail on the head and I bet a lot of siblings will relate to that. it sounds like practical things (e.g. nose wiping) feel a bit more sibling, whereas emotional things (e.g. behaviour) feel a bit more parent. I’d say the opposite probably feels true for me - it’s the practical stuff that would feel more parent-like and the emotional-stuff feels more sibling like.