feeling down and alone

[Carolin]

Well today is turning out to be a struggle. I am alone with my son, and i feel on the verge of tears.

I am panicking because there is no escape. My son is being difficult and loud. I am so noise sensitive, and I am struggling to cope with the volume.

I can't even phone the telephone support because I know I will break down and my son will hear

[Carolin]

Last night was awful.

I had a very busy stressful day taking my children here there and everywhere.

All afternoon I could feel the shaking inside , dizzy and clammy. I managed to hold it in until my husband got home. I then escaped to the car and had one of my worst panic attacks. It was like it had built up all day.

I managed to get through to the mental health support line, and a very nice lady calmed me down. I hate losing control like that ,especially as my panic attack are usually controlled with medication.

I know its Christmas and school holidays which are stressing me, but it is still scary. Just wish I could fast forward to next week.

[beatroon]

Dear Carolin

I wanted to echo previous posts in saying that you are absolutely not alone in how you feel. I know it may not be that helpful to say, but sometimes it's good to realise that other people are also going through similar situations. When I walk down the street, I often feel lonely and like I'm the only one suffering, but in reality, 1 in 4 people suffer from MH problems, and I heard that something like 1 in 3 GP consultations are to do with stress/MH. My GP said that depression and anxiety is the most common thing he sees younger patients about.

Hang in there, it will get better. Have you seen that there's a thread on the GAD sub-board about dreading Christmas? You might find some other people there!

Very best

Bea

[MyNameIsTerry]

I'm really sorry to hear about this, Carolin. Is there any possibility of stealing a few minutes away here & there to regroup? Is your husband going to be off for Xmas soon so he can perhaps help free you up?

I can't imagine how hard it can be to have a child with autism. At the charity walk-in groups I did meet a woman who's young child was in the early stages of diagnosis and I don't know how she coped on top of her anxiety/depression and self harm issues. To be honest, I don't know how any parent copes with what she was describing, her days were lost to it and the impact on her mental health was clear.

It didn't help that it seemed the whole process of diagnosis was based on the parents proving their child had autism! Thats how it felt anyway with them fighting for support, whilst in a standard school who clearly didn't understand it, and filling in form after form to detail his behaviour - that should be up to the people assessing!

Pulisa's comment about how some parents wear their childs autism like some dform of badge of honour, like some do the ASBOS, and how it's more like "keeping up with the Joneses" than people pulling together...just made me dispair!

[gatsby12]

Hi, Carolin. I am autistic and I have mastered it and I have helped people with autism/their parents before. Does he have anything to focus on? Like a game or something to keep him stimulated? Is he constantly full out 24/7? From my experiences while growing up I figure you are also facing a gigantic bureaucracy or some obstacle in trying to find him help.

[debs71]

Hi Carolin,

I am so sorry that you are having such a hard time.

I know how hard and tiring it is caring for a child with autism. I was a Paeds Nurse for many years, and cared for many autistic children, and it is both emotionally and physically hard for parents/carers. I had so much admiration and awe for the way Mums and Dads cared for their children, with so much patience, skill and love, but SOMEONE should be caring for the carers IMO......respite care is CRUCIAL, and it angers me that so little is done or on offer in that respect.

Please do talk to your GP if you can about this, and if they can offer any respite care or know of any avenues as far as that goes. You should not have to struggle alone with this and also have to deal with your own mental health issues at the same time.

I have adjusted my email settings, so do please feel free to PM me if you need a friendly ear. xxx

[Carolin]

Thank you to everyone for replying. It really does help to know others understand and can offer words of support.

Terry, it is so difficult to get extra help for autism. I had to battle for two years to get my son a statement of special needs. I was told he would have to go to mainstream high school, and be seen to fail before his needs could be met at a specialist school. How cruel is that ? I fought it ,and won, but my mental health suffered greatly in the process.

Today we have been to our local charity playground for disabled children. This is closing today after 25 years helping parents with the burden of looking after a disabled child. The staff there are like family, and everyone was in tears. Telling my son he can no longer socialise and play there was heartbreaking. I am the one who makes things right, and this time I cant . No doubt it will be sold for housing. One more example of how difficult it is to access support.

Now both me and my son are in tears. Not the best start to Christmas!

[pulisa]

I've been offline as my internet connection failed on Sunday. I'm so sorry you are struggling so badly, Carolin. Christmas magnifies our problems. School holidays and the transition to a home routine is never easy. You must feel overwhelmed. Please keep writing on here as people want to support you through this very difficult time..?

[MyNameIsTerry]

That's an awful way to treat a child or anyone else. From reading about mental health, and the accounts of members like pulisa, I find it incomprehensible how the NHS seem to treat children worse than adults when it comes to mental health. I'm not a parent but to me that is opposite of how we are supposed to think and so it hardly surprises me how little compassion & understanding can exist in a mental health profession.

It's like how they will let you suffer and until you take serious action, you feel like you don't exist.

It's truly heart breaking to hear a charity like that had gone under. More & more we need these charities as they help to address the gap in support. It's a real pity they couldn't secure essential funding. I really do wonder sometimes when so much money is wasted on commercialism and spin.

My mum has worked with kids most of her life in primary schools in various roles. She trained as a nursery nurse as a young woman (she's mid seventies now) and back then they had to go to nursing college with medical nurses. You can imagine how misunderstood it was all back then, I've seen pulisa talk about her experiences with her kids and the lack of help. I can remember after watching one of the TV programmes about autism once that my mum talked about how they had a young woman with a child with problems that would now likely be seen as this. She was run ragged and her health was suffering. They got together and agreed to keep the nursery open all day & for long hours once a week so she could leave him with them to have a day to get on with things or just rest. They could see how it was making her ill and were concerned for both of them. God knows what happened to them both later.

The lady at the walk-in groups explained once how the regular school had a dress up day and her son was terrified of the other kids in dinosaur costumes and they had to take him home where he was under the tables screaming for ages. God knows how any of you cope with things like this. Just watching your child like that must be heart breaking.

[MyNameIsTerry]

Hi, Carolin. I am autistic and I have mastered it and I have helped people with autism/their parents before. Does he have anything to focus on? Like a game or something to keep him stimulated? Is he constantly full out 24/7? From my experiences while growing up I figure you are also facing a gigantic bureaucracy or some obstacle in trying to find him help.

That says a lot of good things about your character that you do that.

There are others on here with autism so perhaps you will be able to help them too.