This expert event on siblings is now over - we'd like to say a huge thank you to Clare from Sibs for taking the time to answer the questions in the the thread below and offering so much expertise and understanding to members of the community.
You can read Clare's posts below. To find out more about Sibs, head over to sibs.org.uk.
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We're celebrating National Siblings Day 2023 with an Ask the Expert event dedicated to all the brothers and sisters of people who have disability.
Clare Kassa, Chief Executive of Sibs will be with us on Wednesday 12 April to answer any questions to answer any questions you have and offer advice on making sure siblings are always included and recognised.
You can see a great video about why Siblings Day is so important here: youtu.be/GOxNJhEwkQs
If you have any questions for Clare, stories to share about your family, or if you're a sibling of someone with a learning disability yourself, we'd love to hear from you. Join the conversation! 😀
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Hello everyone and thanks for the warm welcome Maurice! I am very much looking forward to joining you next Wednesday for our sibling event. As a sibling myself to a man with a learning disability, I know how unique our experiences are as siblings. At Sibs we work with siblings across the lifespan, providing information, training and events. If you want to ask a question about what support we offer here at Sibs, how you can connect with other siblings, how as a parent you can support your sibling child, or if you want to share your feelings as a sibling, I would love to hear from you. National Siblings Day is such an important way of shining a light on siblings - so let's get the conversation started! I very much look forward to hearing from you all! Clare
Sibs (sibs.org.uk) have an event running tonight (Thursday 6th April 7pm - 8.30pm on Zoom) just for adult siblings. We are hosting a sibling author session with Manni Coe writer of brother.do.you.love beautifully illustrated by his brother Reuben Coe. Come and hear the story behind Manni's brilliant book and join in with the chat afterwards. Booking essential - we still have a few places left! sibs.org.uk/support-for-adu...
This is a graphic with a photo of Manni and Reuben Coe and a copy of their book cover.
My brother has a learning disability and makes life almost unbearable . My parents are now in their 70’s and I worry what will happen when I am left with him. He has affected my mental health with them here (we all live together) and I feel I could not cope.
Thank you for reaching out. I’m so sorry to hear that life is almost unbearable for you and that your mental health has been affected. Living together can feel very intense and it can be really hard for siblings to get some space to themselves.
You’re not alone in thinking about the future. At Sibs, we hear from many siblings who are worried about this and it can feel really overwhelming at times. A lot of siblings, like you, feel they could not cope with caring for their disabled brother or sister when their parents pass away.
The priority at the moment needs to be you. As the saying goes, “you must put your own oxygen mask on first before helping others with theirs”. You cannot start to think about your brother’s future if you’re not well enough yourself. Siblings are used to coming second (or third, or fourth…) to the needs of another, so it can be harder for us to do this at times – but we must take care of ourselves.
So in the first instance, I would recommend:
1. If your GP isn’t already aware of your mental health problems, please request an urgent appointment and get the support you need.
2. Can you get more time outside of the house? You mention how unbearable life is feeling – having some space in the immediate future needs to be a priority for you.
When (and only when) you’re more well, here are a few key things you need to know:
1. You have no legal obligation to care for your brother when your parents pass away. You are not legally obliged to provide care or financial support for him, and you cannot automatically make decisions on his behalf
2. It is up to you and your brother what relationship you have. You can be involved in his care a little, a lot, or not at all. No one else can dictate this for you.
3. Your brother should be assessed by the local authority for care, support and housing that meets his needs. Only his finances will be assessed too – not yours.
And here are some options of next steps that you can take:
1. Write down what you do and don’t want for your future, and for your relationship with your brother. Remember that it is OK to feel however you feel about this issue. Nothing is ‘right’ or ‘wrong’.
2. Can you start a conversation with your parents and brother about his future? Can you share your list with them? These conversations often don’t need to happen all at once, but little and often over time.
3. Some families use a planning guide, such as ‘Thinking Ahead: A planning guide for families’. This covers all the aspects of your brother’s life, such as health, finances, care, housing and more. This can help you take it a chunk at a time, in manageable stages. You can download it here: togethermatters.org.uk/adul...
Many siblings find it helps to meet others who just ‘get’ what sibling life is like. Click here to find out more about our support groups and sign up: sibs.org.uk/groups or join our private Facebook group for adult siblings: facebook.com/groups/1294650...
Take care and don’t hesitate to contact us on info@sibs.org.uk if you need further advice or signposting
Hello, my brother will turn 50 this year, he has a learning disability and has lived with my parents for all his life. I know he'll never be able to live independently and as my parents are getting older I'm thinking more and more that I'll have to be involved with his care in some way. I'm really not phased by that though - the problem has been talking to my parents about it. They still see him solely as their responsibility, and have always been reluctant to let anyone else help them. Can you give any advice about having that difficult conversation with them. I'm worried that nothing will happen until things are too late and then it will be a big crisis to sort out.
Thank you for reaching out. You’re not alone in the situation you describe, as we hear from many siblings in similar circumstances. It’s common for parents to find it difficult to let anyone else help, which in turn is understandably very worrying for siblings. You just want your brother to live a safe and happy life, and that’s not a lot to ask.
To get a conversation started, approaches you can try are:
1. Little and often. There is a lot to consider with future care so break it down into small chunks. For example, ask your parents one question per week. Take care over the time, place and way that you bring up the topic. Change takes time. Try this over the course of a year.
2. Come back to it at a later date. If you feel the little and often strategy isn’t working, wait a while before raising the topic again. This may feel counter-intuitive and exactly the situation you are trying to avoid – but people take action in their lives for different reasons. It may be easier to engage your parents in a discussion when there has been a change in the situation e.g. your brother’s needs have changed, or your parent’s ability to cope or provide care has changed
3. Identify someone else who can raise the issue. There may be someone else who can start the conversation with your parents – another sibling, another relative or a trusted professional. They may be able to raise the topic whilst you are with your parents or they may be able to persuade your parents to talk to you about it.
Even if your parents aren’t able to engage this you on this topic it doesn’t mean you should bury your questions and worries. Write down all your concerns and all your wishes. What would you like for your brother in the future? How much involvement would you like in his life and in what ways would you like to have this? Talk to a trusted friend, do research online or seek counselling. When the time comes, hopefully you will be able to share this with your parents.
You can read more about this issue in our guide Talking to your parents about common sibling issues, which you can download here: sibs.org.uk/guides
You might also find it helpful to chat with other siblings who have been through a similar situation? Connect on our private Facebook group facebook.com/groups/1294650... or at one of our adult sibling support groups: sibs.org.uk/groups
Take care and don’t hesitate to contact us on info@sibs.org.uk if you need further advice or signposting
i've got two children, a son and daugher, my son has a mild learning disability and he is going to be starting a mainstream secondary school in september at the same school as his sister who is three years older than him. they have a great relationship and my daughter loves her brother but i worry about how her school life might be affected when her brother is there and whether she'll be picked on. has anyone gone through the samething?
Hi jim8b We are often contacted by parents who are concerned about how siblings may be affected when their brothers or sisters attend the same school as them so it’s completely normal for you to feel worried about this. However, although this can be a worrying time, there are things which you can do to help
- Contact the school before your son starts and share any concerns with his key worker about how his attendance may impact on his sister
- Speak with your daughter and check whether there are any areas about which she is worried such as how her friends may react, whether she may be needed to help him or if he will struggle with particular things. Work out a plan with her about how to manage these concerns
- Help her to identify someone at the school with whom she has a good relationship as she may prefer to speak to a pastoral worker or teacher about her worries as we know that siblings sometimes find it easier to speak to somebody outside the family about how things are for them. It can also be helpful if she has a key worker in school that she can go to if there are issues during the school day
- Talk to both children before your son starts at the school to check that they both have the same expectations about what the school day will look like such as whether they would like to check in with each other at lunchtime, whether they would prefer to stay separated during the school day, how to manage things in general and who to talk to if there are problems during the day
- Encourage the school to look at our information on supporting siblings in school as this will give them suggestions on how to respond to issues which may arise sibs.org.uk/supporting-youn...
- Encourage your daughter to read our information on School life which will give her some ideas on what to do if things are tricky for her at times. sibs.org.uk/youngsibs/info-...
I hope things go well in September - but do get in touch with us if you need any further support at info@sibs.org.uk
thank you for taking the time to write such a long reply, my daughter's frinds all know her brother and are supportive of him, its others that dont know him or his relationship with his sister at the school that i'm more worried about. but thank you for the advice and good ideas i will definitely be doing them and sharing the info with my daughter!! thank you again.
That's great to know that your daughter's friendship group is so supportive - that will make all the difference! School culture is very important in how siblings experience school - so if they can be positive and offer a safe place for her if there are any difficulties that will be so valuable. We are running a conference for schools in the autumn on supporting siblings, so do let the school know - we will be sharing new resources to help teaching staff. sibs.org.uk/sibs-workshops-...
Good luck and let us know if we can help with anything else at all.
Hi I'm new here, I saw the post on Facebook about this. My little sister has LD and she's amazing and taught me so much. I have never heard of Sibs the charity before, and wanted to know a bit more about what it does?
We live in Hertfordshire, are there any groups or activities you run in the area?
So pleased you found us and great question! We are a UK wide charity supporting siblings of disabled children and adults. We support young siblings through our Young Sibs information Hub sibs.org.uk/youngsibs where there is lots of information for children and young people aged 7-17.
For adult siblings we manage a network of adult sibling support groups (we don't currently have a group in Hertfordshire, but we do have a national online group) do find out more here sibs.org.uk/support-for-adu...
We also run events for adult siblings and we are currently planning a Adult Sibling Event in the autumn - do sign up to our mailing list if you want to be kept up-to-date sibs.org.uk/subscribe/
We also have lots of information for adult siblings on our website - including a range of guides here and an eBook on Self-Care for Siblings check out our resources here. sibs.org.uk/support-for-adu...
If you have any other questions, do feel free to drop us a line at info@sibs.org.uk
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