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siblings of children/adults with learning difficulties

Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
hey, not sure if this really belongs in relationships but anyway...

So i am an older (adult) sibling of a younger sibling (also adult) who has learning difficulties, specifically downs syndrome.

i would be interested to hear from anyone and everyone who has a younger or older sibling (child or adult ) like me , not neccessarily downs.

what are your expereinces of having a sibling with these difficulties?

do you feel excluded by professional services who could otherwise offer you support or are you supported by them in any other way?

what i would especially like to know is - is anyone a member of any siblings groups aimed at people in my situation? i have some info on a project that is baout to be set up to accomodate this, but just wondered if any groups were already in existence.

thanks in advance, would appreciate your info.

Comments

  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    36 views and nobody else is in this situation or has anything to offer?

    i dont believe that:chin:
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    36 views and nobody else is in this situation or has anything to offer?

    i dont believe that:chin:

    I've been here a number of years and can't remember any of the regular posters being in the same position as you. :(

    I'm sorry that no one can help at this stage .... but, remember, you posted this at just 12:54 today and lots of members only come online in the evening etc. I'm sure if anyone can help, you just need to give us a little bit of time. :)

    p.s. I'm sure you do an awesome job with your sibling. :heart:
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Teagan wrote: »
    I've been here a number of years and can't remember any of the regular posters being in the same position as you. :(

    I'm sorry that no one can help at this stage .... but, remember, you posted this at just 12:54 today and lots of members only come online in the evening etc. I'm sure if anyone can help, you just need to give us a little bit of time. :)

    p.s. I'm sure you do an awesome job with your sibling. :heart:
    hi

    thanks for pointing that out! lol just me being a little impatient as have been working from home today.

    gosh, well i would certainly be surprised if noone else was in a similar position judging from the number of users, although i guess maybe if they know people that are, rather than themselves that would also be useful.

    and thank you very much.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    There are a lot of people who view these message boards who are not registered.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    G wrote: »
    There are a lot of people who view these message boards who are not registered.
    you mean those that arent reistered could be in the same situation but can comment due to not being registered?
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    you mean those that arent reistered could be in the same situation but can comment due to not being registered?
    Yup :yes:.

    I don't have any experience of your personal situation, but I just wanted to tell you that my dad's youngest brother (I think there's about 15 years between them, but I'm not certain, I know that it's fairly significant though) has downs and now that both of his parents are gone, he lives in a specialist home. BUT, despite that, he still lives a good life, last I heard he had a ladyfriend (although that was probably 7 or 8 years ago now), and he was really happy. Obviously it depends on how high-functioning your brother is, but there are options. I know that's not exactly what you wanted to know, but I thought I would put it out there anyway.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    My younger brother has (a very mild case) aspergers. It wasn't really difficult for me because it is only mild. However I found myself standing up to his bullies and explaining to other children in hope they'd be less mean. I'd also translate for him alot too when adults couldn't understand what he was trying to say. It can still be hard at times now, he still gets wound up and upset very easily and can't understand how some people can be so selfish etc. He still has tantrums and gets into moods. But I'm so used to it I don't know any different. I don't have any other siblings so I don't know what it's like to have a 'normal' sibling.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Franki wrote: »
    Yup :yes:.

    I don't have any experience of your personal situation, but I just wanted to tell you that my dad's youngest brother (I think there's about 15 years between them, but I'm not certain, I know that it's fairly significant though) has downs and now that both of his parents are gone, he lives in a specialist home. BUT, despite that, he still lives a good life, last I heard he had a ladyfriend (although that was probably 7 or 8 years ago now), and he was really happy. Obviously it depends on how high-functioning your brother is, but there are options. I know that's not exactly what you wanted to know, but I thought I would put it out there anyway.
    hi franki, thanks very much for your input. glad to hear your uncle (im sure thats right) is doing well and just shows that people with any level of disability/learning difficulty or whatever term you use to describe it, can and DO live happy, normal and functioning lives.

    Ive been away from the boards for awhile but i am REALLY hoping that people who read this thread tae note of it and put down their experiences and maybe answer my above questions as it would be really useful to me. thanks
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Ballerina wrote: »
    My younger brother has (a very mild case) aspergers. It wasn't really difficult for me because it is only mild. However I found myself standing up to his bullies and explaining to other children in hope they'd be less mean. I'd also translate for him alot too when adults couldn't understand what he was trying to say. It can still be hard at times now, he still gets wound up and upset very easily and can't understand how some people can be so selfish etc. He still has tantrums and gets into moods. But I'm so used to it I don't know any different. I don't have any other siblings so I don't know what it's like to have a 'normal' sibling.
    hey ballerina

    thanks so much for sharing your situation and i can totally relate to everything you say. I too have to deal with awkward situations with people where they dont understand what my brother is saying, or people stare alot. having said that i can understand why they do.

    im used to it too and dont have any other siblings either so 'normal' sibling to me is normal for what my brother is though i guess none of us are really normal in one way or another. it can be really difficult at times i know and recently ive found myself up against people who presented themselves as truly understanding of my situation, and then going on to make offensive comments about children with special needs right in front of me, knowing full well what they were saying and with no apology despite the fact that i stood up to them about it.

    www.sibs.org might be useful for you to look at.

    i really hope people in my/ballerinas situation respond to this thread, whatever situation they are in, even if not themselves, whether it is a close friend or relative who is in our situation im sure many people would benefit from answering my questions and sharing experiences as i know i certianly would. thanks!
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    im sure im not making demands bu saying that people HAVE to respond to this but imslightly disappointed that this hasnt generated much response - are people afraid due to the subject of this thread? please dont be. but im quite staggered that out of 40000 users on a few have replied.

    please.
  • Former MemberFormer Member Posts: 1,876,324 The Mix Honorary Guru
    Hi littlechattabox22

    Sorry to hear you're disappointed by the responses - it might well be that noone has experiences of the situation they describe that they feel would be helpful - or that they want to share. It could be that some people don't feel happy talking about their siblings or family friends yet or don't feel that what they have to share would be relevant or useful.

    It's also worth bearing in mind that while 40000 people are registered, not all of them are active users.

    I wonder if it might be worth you exploring Carers.org discussion boards. I'm not sure if you are a carer for your sibling but even if you are not, there are likely to be many more people on there who could share helpful experiences and discussion with you.

    Of course, continue to post and share on here as well - just thought this might be helpful for you in this particular instance :)
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