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ASC and agoraphobia

Rainbowcat

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

  • in reply to Mum on a mission :)

    Hi mum on a mission,

    Thanks for your support x

    I've spent the last18 months fighting for support. It's been so difficult to access that I had to ask our local MP to get involved. We had 7 referrals to CAMHS turned down before they finally saw my daughter. We don't meet threshold for disability team. My son's school and my youngest daughter's nursery are supportive and know our situation. But they don't have any resources for any practical help.

    Everything is a battle and I think I need some time not fighting everyday and just spend some time with my daughter, who is now getting some support after all my battling. 

    I'm worn down and it feels good to be honest about that!

    I also feel quite down about how little control I have over my life because my daughter is housebound due to agoraphobia. I even have to find people to sit with her while I do the school run let alone run errands. Everything has to be planned, there's no spontenatey. And I find that hard. But I also have faith that things will improve and my daughter will live a happier life. She desperately wants to leave the house and I'll do everything I can to help her xx

  • Hello,

    it’s good that you can be truthful about your feelings and here is a great place.  If I told some of my friends how I feel sometimes they really wouldn’t understand. But that’s okay.

    A lovely elderly lady I know once told me that as a mum we always put everyone else first, but really she should look after ourselves the most because if we get ill then who will look after everyone else.  

    I think you’ve had some great advice from the other members.  You really need to fight to get some additional help for your family.  Does the school your other children attend know about home life, they may be able to offer some support.  Can you speak to a specialist needs school and see if they can provide any support for you and your daughter, maybe she could build up to attend for a half day? are there any support charities in your area or coffee morning groups ? Also maybe you could tell some of your friends about your situation,  I know myself I hadn’t told my own mum about the constraints / schedule / timing issues my daughter puts on our family and one day I just told her and that felt better.  

    I really hope you can get some respite and please know you are an amazing and kind mum, you deserve a break and I hope you can get a plan together to help you all.

  • in reply to Kerri-Mod

    Hi Kerri,

    The parent to parent service sounds wonderful, I'll definitely give them a call. 

    This seems like a very supportive community so I'm glad I've found you x

  • in reply to Roswell

    Hello Roswell, 

    I do need me time! I dream of spending time on my own at the moment....

    Sleepovers aren't possible at the moment but certainly something to think about in the future x

  • 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

  • My first thought that comes to my head is you need a bit more "me time". You're taking on so much. Do you have any brothers/sisters/a mother/father/in-laws who are nice people and trustworthy? Perhaps if your daughter stayed with them every once in a while it would give you some time to think things over, recharge and find a new way forward with a fresh perspective.

  • in reply to Rainbowcat

    Loving somebody is always of help. Hope the conversation with NAS goes well.

    You're very welcome - we all need a bit of reassurance sometimes x

  • in reply to DuckBread

    Thank you for your lovely reply, that's so reassuring X 

    I went to my GP a while back, she's very supportive but all they can offer is medication and I feel like I need practical help more than medicine. But it helps to know she's understanding of our situation.

    Thank you for saying that she knows she's loved and that makes a difference. It feels like loving her comes so easily that it can't possibly be of help!!! But that's just part of parcel of having to fight for everything as a SEN parent I suppose....

    I will give Nas a call again. I called a while back about my daughter's use of the computer as a way of soothing herself. The man I spoke to was so great. Kind, reassuring and totally unjudgemental. 

    Thanks DuckBread

  • I'm so sorry to hear you and your daughter are going through such a difficult time.

    I'm not a parent yet, so I don't have any specific advice to offer, but it sounds like you're doing all the right things. The NAS has a helpline - maybe you could try calling them to see if there's any support they can offer? Their number is 0808 800 4104. Perhaps you could talk to your GP about getting some support for yourself as well - you seem to be under a lot of pressure and you need to take care of yourself too.

    I know it's easy to be self-critical, but you're clearly doing everything you can for your daughter. I can tell from this post that you love her very much and would do anything for her - that makes a huge difference. Even though she's struggling, she will know she's loved.

    I really hope things improve for you both. Please keep coming back here any time you need to talk - we're all here to listen xx