Chat Hello to new siblings! Suddenly I find it hard to be with my disabled sister

Thread: Suddenly I find it hard to be with my disabled sister


  • Libby.h
    Participant
    April 9, 2018 at 12:20 pm

    Hi, I’m 16 so am doing my GCSEs which is stressful enough as it is. However, I also have a sister with a v rare condition called Trichiothiodystrophy, which is a lot like autism. and also a condition which causes fits, but isn’t epilepsy. It is un-diagnosable with no discernible triggers. She is two years older than me, and when we were young, her illness didn’t matter too much, we were just little children, and she was cute. She has no hair (part of her condition) and huge glasses and was very tiny. She was simply very cute. But, when she turned 14 and I turned 12, she became totally uncontrollable. Whether it was puberty triggering some other aspect of her disability we will never know- not that it matters. What mattered was that suddenly I couldn’t be alone with her, for fear of being hurt. She is weak, another part of her disability, but still. She would smash things and go into my room to break things and rip up my books (which are extremely beloved to me!). We learnt to control her and calm her- a good tip for autistic children, bread/crisps/cake/ anything carby really helps to calm them often- and it got easier. I went away to and still go to a boarding school to be away from her, i only come home every 6 weeks or so. But now I suddenly find it very hard to be with her. I don’t know what to do. My parents are angry with me because I don’t ‘put in the effort’ but i dont know what to do. really i am just here to find someone i can talk to. so yeah. feel free to reply i would love to make a friend.


    Kate.s
    Participant
    April 11, 2018 at 6:54 pm

    Hi I’m 14 and like you I have a brother with a rare condition where he has a extra chromosome I find it really hard sometimes as I can’t spend a lot of time with my mum and dad and find it really hard coping with his tantrums too as it’s like autism but anyway I was looking for someone to talk to about it and make some friends ☺️ Xx


    Asterix
    Participant
    April 11, 2018 at 6:57 pm

    HI,

    My brother hurts me a lot too, you can talk to me!

    Asterix

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