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Looking for people experiencing similar problems

Robyn21

I have a 14 year old daughter recently diagnosed with autism and has been in burnout since December last year. She’s not currently in school, waiting on Ehcp and section 19. 
I am incredibly lonely, I have no one that understands that I can talk to. At the moment no one knows what is going on other than our household. No support. My husband is finding it challenging to know how to deal with our daughter and their relationship is pretty poor he doesn’t have any involvement with her and if he does he reacts in a way that blows things up.

I’m really struggling to know what’s best and carrying the weight of her present and future.

My biggest struggle with her right now is getting to sleep at a sensible time and getting her up before 3pm!

Shes into gaming and her only communication and social interaction is through this. She’s staying up and online with friends in America meaning they’re on a different time and she’s angry with me as she feels she’s finally making friends and having fun but I’m taking the computer away at 11pm. I wake her before I leave for work at 8.15am with breakfast, she sets alarms which don’t wake her and if no one is at home to try to wake her she’ll still be in bed when I get home which can be between 3 and 5pm.

On the weekends I spend my entire day just trying to get her up.

I’m exhausted, I feel lonely, I miss her, I miss all the things we aren’t doing together. 

Parents

  • I feel for you, my son is 16 and also has no social interaction outside his gaming. His friends are also in in different countries and they are all up when he needs to be sleeping! We disable the wifi to his gaming at a reasonable hour but get "you are ruining my only chance of friendships, worst mother ever etc. 

    Would your husband consider doing a parenting course for parents of children with autism? 

    It is so lonely and you know you can't talk to a friend with a neurotypical child as it is totally different! 

    Sorry you are going through a hard time and I can't offer much help as I am going through it as well. I guess sometimes knowing you aren't alone helps a little. 

  • in reply to Lilybloom123

    Thank you, I’m sorry you’re going through similar, it is comforting to know I’m not alone in my struggle I just wish things weren’t so hard for us. I question myself all the time about what I’m doing, it’s not easy is it. My husband mentioned switching off the WiFi at a certain time which I know will cause issues in itself but needs to be done. I don’t know how he would feel about a parenting course I think maybe if we did it together, as I think it would be helpful for myself also, thank you for the idea and for responding to me, I really appreciate it. 

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  • in reply to Lilybloom123

    Thank you, I’m sorry you’re going through similar, it is comforting to know I’m not alone in my struggle I just wish things weren’t so hard for us. I question myself all the time about what I’m doing, it’s not easy is it. My husband mentioned switching off the WiFi at a certain time which I know will cause issues in itself but needs to be done. I don’t know how he would feel about a parenting course I think maybe if we did it together, as I think it would be helpful for myself also, thank you for the idea and for responding to me, I really appreciate it. 

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