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Siblings tips

EdiegundleEdiegundle Posts: 4Member
edited June 2014 in Autism and Aspergers
Hi,
My brother has Angelmans syndrome. I was wondering if there were any other brothers or sisters out there who want to share tips?
thank you!

Replies

  • JimJamsJimJams Posts: 175Member Listener
    edited June 2014
    Sorry I dont know anything about this condition, my son has autism, dont know if there are any similarities there, if you have specific worries or concerns, why not post them here and see if anyone else has similar issues.
  • HeatherHeather Posts: 188Member Listener
    My knowledge of Angelman Syndrome is only via my own research as a friends daughter was tested for this. She showed classic symptoms but was not diagnosed. My friends little girl went to school with my son and we exchanged info on epilepsy but there the similarities stopped.
    Do you have any sibling support groups? My daughter enjoys her support groups and feels relaxed knowing people at the group understand how different her life is compared to 'normal'.
  • savvymumsavvymum Posts: 5Member
    Sorry the only thing I know about Angelmans syndrome is via a little boy in my son's class at school. I hope you find someone that you can share tips with
  • EdiegundleEdiegundle Posts: 4Member
    Thanks so much for your messages. I am really looking for any siblings tips, not specifically related to Angelman Syndrome just helpful siblings tips. All thoughts would be helpful. My brother goes to a residential school, when I am with him I find it hard to get his attention and to keep his attention. Also I find it really awkward to tell new friends about him so a lot of my friends don't even know he exists, which is also hard for me. Any other siblings out there who know about this ?
  • doreendoreen Posts: 1Member
    My 8 year old daughter has epilepsy, global developmental delay and several other problems that are still under investigation. She has a twin sister and a 9 year old brother and they all attend mainstream school together. I'm not sure how old you are, but I'm sure either of them would be glad to talk about how they cope or not, as the case may be!!!
  • HeatherHeather Posts: 188Member Listener
    I would strongly recommend you get in touch with your local Carers Group. My daughter has been a member since she was 5yrs old and they befriend and support siblings. I don't know what area you are in, but there is a website called Youngcarers.net. It's well worth talking to people who understand. Good luck
  • EdiegundleEdiegundle Posts: 4Member
    thanks for all your postings i will check out the website. thanks for offering for me to speak with your children but i am a 12 years old, if i think of any good tips i will post them here for every one to see.
  • HeatherHeather Posts: 188Member Listener
    Hi Edie
    My daughter is now 13 and she found it useful to have a visit from Young Carers come to her school and sit down with her class mates and explain about disabilities. Alot of her peers never understood why it was so difficult to juggle home life and social life, when mum and dad are concentrating on the other sibling, not because of a lack of love and care, but because their needs are different. She was embarassed to admit our family life is so different to many of her friends, but now they understand and have more time to support my daughter. It was also enlightening for the teachers, they don't appreciate the impact on every member of the family. It's hard, but I'm sure you'll agree, you wouldn't want it any different!
  • EdiegundleEdiegundle Posts: 4Member
    Hi Heather,
    thank you for your message i think this is a good idea, my friends at school don't know any thing about disabilities.my mum took a training to give a lesson as school which shows how difficult it is to be disabled she did things like getting people to write on the back board using their left hand and standing on a wobble board on one foot and trying to drink some thing at the same time.we always meant to do this with my class but never got round to it. but i am going to ask her to ask young carers to come to my school. thank you :)
  • Bigsis2Bigsis2 Posts: 2Member
    Have you heard of an organisation called www.sibs.org.uk? They're a UK charity working with people who grow up with a disabled brother or sister. It would be really worth you contacting them because they offer a lot of support and advice to siblings of all ages - but in particular younger siblings. They would also be able to put you in touch with other siblings in a similar situation to yours. My brother also has a learning disability, and I know there are very specific issues you experience as a sibling, that only other people in the same boat appreciate. Good luck!
  • NaomiNaomi Posts: 29Member Listener
    Thankyou for posting your query. As a mother, its really helpful to hear how siblings are getting on. My daughter who is nine complains that her 12 year special needs brother ignores her. He is very needs based so I encourage her to give him his favourite treats/toys and he has to sign thankyou. I know she felt shy about having her friends around but I would use simple language to help her explain to them about his problems. We started off by having our son around for very short periods when her friends came (perhaps him arriving home as they left). I would have told the friends' parents about his needs. We then encourage Jack to sign hello to give some sort of basic communication between the children, and I would explain that's how he says hello. I think that's enough as children dont necessarily chat to their friends' siblings anyway. I know it can be tough but I tell my daughter to think of all those people who have special needs siblings - like Wayne Rooney's wife - and have gone on to be happy and successful adults.
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