Hello
Clare Kassa the CEO of Sibs, the charity for brothers and sisters of disabled children and adults, was here to celebrate siblings of someone with a learning disability.
This event is now closed, but please read Clare's posts.
If you would like to know about Sibs? Have a look at their website here - sibs.org.uk/
Best wishes
Sarah
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Hello Clare
So glad to see this event on here. I think siblings are often forgotten. My son (grown up) is wonderful with his sister. They get on very well and always have. Even as children he was very calm and patent, and she relied on his help. I really admire him as nothing ever phased him. They don’t spend a huge about of time together, esp over last year, but that is mainly as he doesn’t live with us. When they do meet up he picks up where he left off, helping her in little ways. For years he helped her to with her clothes. It was very sweet but it meant she didn’t learn. Even now he stills ties her shoe laces even though she can do them.
He is very relaxed, but I do worry about him having to take on more as I get older (or worse). He says let’s see what happens, but I can’t see any other option. What an awful pressure for a young man who may want a family of his own. I’m sure other families must be facing the same. How do you prepare? Grace
Hello Grace,
Thank you for posting this question, as many other parents and siblings will be wondering the same. How do you prepare for the future? It can feel overwhelming at times as there’s a lot to think about – health, finances, care, housing and more. As parents and siblings, we just want our relative to have a safe and happy life.
Here’s our advice:
1. Start small. It’s normal to want to put off planning for the future because there’s just too much to think about. Start small and take it a piece at a time.
2. Use a planning guide such as Thinking Ahead: A planning guide for families. It’s free to download and there’s a re-writable version for you, your Son and Daughter to make notes on together.
3. Keep talking. It’s great to hear that you’ve already started conversations with your Son about his sister’s future. Keep going and use the planning guide above to help you. What would you like for the future? What would your Son and Daughter like?
4. It will take time. It’s normal for conversations between parents and siblings to take place over several months – it will take time and won’t all be resolved in one go.
5. Get more information about wills, trusts and planning for the future at one of Mencap’s online seminars here
6. Tell your Son about Sibs. There are 1.3 million adult siblings of someone with a learning disability in the UK – your son is not alone! We have a range of support of adult siblings including support groups, guides, an eBook and online events.
7. Remember that there are lots of options for your daughter’s future and the type of care, support and housing that she might want and that might be suitable for her.
8. And there are lots of options for sibling relationships. Siblings have no legal obligation to provide care for their disabled brother/sister when parents pass away – they don’t become ‘next of kin’ in the eyes of the law. Some siblings help with care tasks, some prefer to be ‘just a sister’ and there’s a whole spectrum in between. It’s about what works best for both the sibling and their disabled brother/sister.
9. Remember that you’re not alone. Reach out to other parents (on this forum, at your local carers centre, on Facebook groups) and share your worries. What are their experiences of planning for the future?
Thank you for this question Grace. We’d love to hear from other adult siblings and their parents on the forum. Can you share your experiences with Grace? How did you talk about the future together and make plans?
Clare Kassa
Sibs
Thank you Clare. You break this down so well. It is good to know we are not the only ones. I think you are right about starting small. I am also going to look for that guide - I think a bit of structure might help. I wasn't aware of Sibs before I saw the posts on here so I will have a look round your website too. Again thank you. Grace
Hello everyoneI am very much looking forward to joining you next week to talk about everything sibling related! It would be wonderful to hear about your experiences of being a sibling, or about supporting a sibling in your family or workplace. Sibs supports siblings across the lifespan at whatever age or stage, so do get in touch next week and share your thoughts and questions. In the meantime, do take a look at our websites for more information sibs.org.uk youngsibs.org.uk
See you on Monday!
Warmest wishes
Clare Kassa
Sibs
Clare has written a great post about Adult Sibling Support Groups here - healthunlocked.com/mencap/p...
Please take a look.
Hello Clare. My 6 year old son has a learning disability. We also have a younger daughter (nearly 2) and we have started to think about how to talk to her about ld and how we can best help their relationship as she gets older. She’s too young now, but I wonder how she will feel about it all. I also think she will realise very quickly how much time we have to devote to him, but I don't want her to miss out. The other issue that we have is that he is a really bad sleeper and he wakes us all up (including his sister). We find this hard enough, but if you have any ideas we’d appreciate it. They have separate rooms, but she gets very tired (as we all do). Thanks. Adam
Hello Adam
Thanks so much for your post - I know it will resonate with many parents here.
We know how challenging it can be for parents to feel that they are meeting the needs of all of their children and you have mentioned a number of issues which we know can be difficult to manage – talking openly about disability, spending individual time with a child and sleep. As a parent, it’s normal to worry about all of these things but it’s great that you are aware of them too in relation to your sibling child, as siblings tell us that just having these issues acknowledged can really help them to feel valued and supported.
Your daughter is still very young but it is never too early to start talking about disability in a natural, age appropriate way, responding to her questions as they come up. Siblings tell us that the more they know about what is going on with their brother or sister and their disability, illness or health condition, the more they are able to cope with day-to-day life as well as thinking about the future. However, it’s always better to respond naturally to situations, rather than creating a formal, planned discussion.
Siblings love getting attention from a parent but it’s important to remember that this needn’t be for long periods of time for it to have an impact. Just 15 minutes per day as special time just for them can go a long way to helping a sibling know that they are just as special as their brother or sister and creates a structure which they can look forward to and depend on.
Lack of sleep can have a huge impact on a household but there are things you can do to help with this. Talk to your GP and ask for a referral to a sleep clinic – they can provide specialist help for the whole family. Perhaps your daughter could have sleepovers at a grandparent or relative’s house on occasion, just to give her the chance to have a night’s uninterrupted sleep?
Try not to worry too much about their future relationship – siblings tell us how much they love their brothers and sisters and how much they enhance their life. This isn’t to say that meeting the needs of all of your children is without its challenges but it sounds as though you are already doing a brilliant job.
Do stay in touch with us - sign up for our monthly newsletter and keep in touch with any events or news as your daughter grows up. sibs.org.uk/subscribe/
Best wishes,
Clare
Sibs
Hi Clare,I am lucky enough to be an adult sibling of a brother with Down Syndrome. We have both been shielding during lockdown but thank goodness for technology which means we can have a video call every day. I have lots of very happy memories of growing up with him. I am 10 years older and I think the worst part was knowing that something was wrong because of the things I heard my parents whispering and then being relieved when I found out that he wasn't actually physically ill. He has always been a wonderful brother as well as a caring and loving son, especially when my parents needed him to care for them rather than the other way round. He has a great sense of humour, an encyclopeadic knowledge of pop music and a penchant for very loud shirts. I am glad you are focusing on siblings. I went to an inaugural meeting of Sibs, introduced by Mencap, in Manchester, about 40 years ago but there was no follow-up so I am glad it has revived!
Best wishes to all siblings xxx
Hi Hazjay! It is so wonderful to hear about you and your lovely brother. I can't agree more that technology has been a saviour for so many siblings during this time who haven't been able to see each other physically. It's interesting to hear about your experiences growing up and your worries about your brother's health. We know it is so important for young siblings to have good information so that they don't worry unnecessarily. We now have a website just for young siblings with lots of information about disability and advice on dealing with some of the issues that crop up within their families. We would love to know what you think of this youngsibs.org.uk It sounds like you have an amazing relationship and that your brother has given you lots of joy and support. (And pop music knowledge!)
We support a network of adult sibling groups, including an national online group - do check them out here. sibs.org.uk/support-for-adu...
I hope you and your brother are able to get together again soon.
Best wishes to you both
Clare
Sibs
It is so great to hear of siblings getting on so well. Your brother sounds like the best. All the best to you. Grace
Thank you Grace and all the best to your family. I dont think you should worry too much about your son and his relationship with your daughter as they get older. My husband and sons are great with my brother. None of us know what will happen in the future but, generally, things work out for the best. I am sure your son will find plenty of support if and when he needs it and he will always have a loving relationship with his sister.
Don't miss Clare's post about Sibling bereavement here - healthunlocked.com/mencap/p...
There's some fabulous information and advice on here. Please do take a look.
Best wishes
Sarah
It is great to read more about siblings. Hazjay I love your post about your brother. You reminded me of some of the posts that I read on National Siblings day (10 April). I wanted to share one with you on Twitter here about George and Lauren - twitter.com/mencap_charity/...
Hello. I am also a sibling. My brother is brilliant, and I wouldn’t want to change anything about him. We are both in our 40s now. He is the best brother, son and uncle.We get on well and always have. But year has been hard recently. We have had to get creative and I've made him lots of gifts during lockdown (cards, photo albums, pottery, food). We also like to watch movies together (when we can). It just isn’t the same not being in the same room to watch the films. We have kept up on video calls, but it only really works if his in a cooperative mood.
I have a few concerns that are similar to Graces. I expect to take on caring for my brother at some point. He currently lives with our parents. We have some plans in place for when they can’t help. We have a Trust set up and I would really recommend looking into the money and legal side of things too. To be honest, I am more worried about my parents (rather than my brother and me) as I think being older carers is very hard on them.
So good to read all the comments on here. Siblings are overlooked when they should be celebrated. I think this is something more people have thought about a bit more with Jo Whiley and all the publicity she did about her sister and the vaccine.
Jo
Hi Jo
Lovely to hear from you and and so wonderful to hear that you have such a strong and loving bond with your brother. This year has been hard for siblings in trying to maintain relationships with their brothers and sisters, often at a huge difference. It's so good to hear how creative you have been - what lovely gift parcels your brother has received!
Future planning is one of the main questions that adult siblings come to Sibs to get help. It can often feel overwhelming. both emotionally and practically. It sounds like you are already well organised, and you are absolutely right to start planning and having conversations as early as you can. We have produced guides for siblings on topics such as decision making and looking after money - check them out here. sibs.org.uk/support-for-adu...
Your worries about your parents as they become older carers will I am sure be shared by so many members on this forum. (We would love to hear from other siblings about how they have managed this - do comment below)
And you are right - siblings are very often overlooked and we are working hard to try to ensure that their voices are better heard. We are thrilled to share that Jo Whiley became our patron in January this year and she has done so much already to raise the profile of siblings more widely.
I do hope you and your brother get the chance to watch movies together again soon.
Best wishes,
Clare
Sibs
Clare had written another brilliant post here all about How to support young siblings - healthunlocked.com/mencap/p...
It offers some great top tips to parents of young siblings.
I have loved being part of the Mencap community this week to talk about siblings. Thank you for all of your responses and questions! It has been wonderful to share some of the work we are doing and importantly hear about your lives with your brothers and sisters and sibling children. Thank you for sharing with us. Just a reminder that we have a host of information on our two websites sibs.org.uk and youngsibs.org.uk We also send out a monthly newsletter which covers events we are running, new research and information. You can join here sibs.org.uk/subscribe/ If you are on social media do say hello. We are just getting started on Instagram - so do look us up if you are there. Thanks everyone and hope to see you again soon.
Warmest regards
Clare
Sibs
Thank you so much Clare. It has been great to hear from siblings and to find out all support Sibs (sibs.org.uk/) can offer.
Good luck with Instagram 😀
Cheers
Sarah
Hello
In case you missed them - here are the links to Clare's other posts about siblings
> Talking to young siblings about learning disability - healthunlocked.com/mencap/p...
> How to support young siblings - healthunlocked.com/mencap/p...
> Sibling bereavement - healthunlocked.com/mencap/p...
> Adult Sibling Support Groups - healthunlocked.com/mencap/p...
There are some great ideas and links, so have a quick look.
Best wishes
Sarah
Many thanks to everyone who has joined in, or read, this conversation. Also a huge thank you to Clare from Sibs for such amazing posts.
This topic is now closed.
If you want to post about siblings (or anything else) please just write a new post - healthunlocked.com/mencap/w...
Keep an eye for more post about Sibs on the online community very soon.
Best wishes
Sarah
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