Expert event (19 to 21 April) - siblings: Hello... - Mencap


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Expert event (19 to 21 April) - siblings



Clare Kassa the CEO of Sibs, the charity for brothers and sisters of disabled children and adults, is here for three days starting on Monday 19 April to celebrate siblings of someone with a learning disability.

She would love to hear from you about what being a sibling means to you. You could:

> share a favourite memory or story about you and your sibling.

> be a parent who is struggling to give enough attention to all of your children, and you are looking for a bit of advice.

> let us know about things that have worked well for you or your family – perhaps you are an adult sibling who has met other siblings and has found it helpful.

Want to know about Sibs? Have a look at their website here -

Best wishes


8 Replies

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

clkSibsExpert in reply to Grace2232

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



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

See you on Monday!

Warmest wishes

Clare Kassa



Clare has written a great post about Adult Sibling Support Groups here -

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

clkSibsExpert in reply to Adam1975

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.

Best wishes,



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

clkSibsExpert in reply to Hazjay

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 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.

I hope you and your brother are able to get together again soon.

Best wishes to you both



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