ASC and agoraphobia

Hi all,

I'm grateful this group is here, I've been searching for a place to be honest and open without the fear of judgement.

I am on my knees and have been for nearly a year.

My 10 year old autistic daughter has been out of school for 18 months, since her school placement broke down and she refused to go. 

She is highly anxious and rarely leaves her room, let alone the house. I also have two other younger children who go to school and nursery so you can imagine the logistics of finding people to care for my daughter so I can do simple tasks such as the school run etc. 

She is kind and gentle and wonderful. She is also depressed, suffering from severe sensory difficulties and so anxious she can't leave the house. We recently, as a last resort, tried medication. But the side effects were awful and didn't subside so we stopped. She also suffers from suicidal ideation, which I find most upsetting, although obviously it's more upsetting for her than anyone.

Finding support has been so stressful I've basically made myself I'll will stress trying to access it. We now have CAMHS and a family support worker involved . Which is hard fought for and welcomed.

But there's no support for me as I support my daughter. Everyday I'm mummy, mental health worker, nurse, PA and all this is 24 hours a day. I'm exhausted and I don't know how I'm going to carry on. I feel like nothing I do makes a difference and I'm very self critical and down on myself.  

I've lost friends because I can't get out and see people and when people come to see me I can't speak openly about how I feel because I don't want to upset my daughter. 

I feel trapped, unsupported, lonely and isolated. I desperately hope things get better soon for all our sakes 

Thank you for reading, it really does help to be heard xx

Parents
  • Dear NAS63920,

    I am so sorry to hear that you are struggling with supporting your daughter, but it sounds as thought you really need some support too.  The Community are very good at responding and I'm sure you will get more responses from them.  As suggested by DuckBread, please do give the NAS Helpline another call. 

    You might also like to contact our Parent to Parent Service who offer emotional support to parents and carers of children or adults with autism. This service is confidential and run by trained parent volunteers who are all parents themselves of a child or adult with autism . You contact the team on 0808 800 4106. Please leave a message and the team will call you back as soon as possible at a time that suits you, including evenings and weekends. Alternatively you can use contact the team via web form: https://www.autism.org.uk/services/helplines/parent-to-parent/enquiry.aspx.

    I hope that is some help.

    Kerri-Mod

Reply
  • Dear NAS63920,

    I am so sorry to hear that you are struggling with supporting your daughter, but it sounds as thought you really need some support too.  The Community are very good at responding and I'm sure you will get more responses from them.  As suggested by DuckBread, please do give the NAS Helpline another call. 

    You might also like to contact our Parent to Parent Service who offer emotional support to parents and carers of children or adults with autism. This service is confidential and run by trained parent volunteers who are all parents themselves of a child or adult with autism . You contact the team on 0808 800 4106. Please leave a message and the team will call you back as soon as possible at a time that suits you, including evenings and weekends. Alternatively you can use contact the team via web form: https://www.autism.org.uk/services/helplines/parent-to-parent/enquiry.aspx.

    I hope that is some help.

    Kerri-Mod

Children