AIBU to feel angry at my situation

[polkapretty]

Hi iv just come on here to vent. I don't know if Im bu and even if I am, what difference it will make. Im 26 and just feel really angry inside. I am very lucky as I have managed to buy my own house and have a wonderful dh and 2 wonderful dd's. My oldest dd is 6 and she is disabled. Shes in a special needs school and needs a lot of help and is autistic. I find I never get a single minute to myself day or night. I had my youngest dd before I realised the extent of my oldest childs disability. My dd2 stil doesn't sleep through the night and im constantly exhausted. My dh is wonderful but works 12 hours a day and has to travel an hour to work and an hour to get home so is exhausted himself when he gets home. He leaves at 7 in the morning and doesn't get home until 9 at night. I find that im constantly exhausted and feel so angry inside and alone. I have no one to help. I have no family who I can trust to have my children. My husbands father is in a care home and his mother has passed away. The only family I have is my mum and dad and they have my sister to look after who is severely autistic himself. I just feel so angry with the world. My childhood was took up with helping my mum care for my sister. It was always so stressful and I have no other siblings so no one else to confide in. I always wanted someone to play with to do "girly" things with and this was never possible. It was always one stress after another and although my parents did try their best and they spoilt me with material things I just wanted a bit of time with them and to do "normal" things. Fast forward to me having my own children and my first born also is autistic. I feel like life is so unfair. When pregnant with both of my dd's, I never smoked, drank, or ate anything that u weren't supposed to and she turned out the way she is. I used to see people who were also pregnant with a vodka and coke or a cigeratte and it makes me so angry that they have gone on to have "normal" children whilst my daughter is the way she is. I feel like autism has ruined my life. It has been a black cloud hanging over my whole childhood, now in adulthood and even when im old their is no escaping it as if I don't look after my sister she will go into a home which I couldn't bare. Even now as I write this, I would love nothing more than a break, even for a night out with my dh. The only person I can ask is my parents who have said they cant as they are to stressed out caring for my sister. Its been almost 4 years since weve had a night away from the children. I feel like im at breaking point but wont give in. Noone seems to realise as from an outsider looking in my children are immaculate. Always clean, with the latest things and more clothes then they could ever wear. My house is always clean and tidy and I don't think many people would ever guess I feel this way. I know my children will never suffer because of how I feel as I wouldn't allow it, as I know what it feels like, but I have panic attacks and feel constantly like I could cry. I don't know what to do anymore. If you've read this far then thank you.

Do you have friends who could help? I understand a bit where you are coming from. My eldest child has a disability and I was a sp it was a lonely, difficult time

Are you getting carers support?

Are there local autism/carers charities?

Do you have any friends or even fb support groups of people in a similar situation?

Is there a home start in your area?

You sound like you need some respite but services are being cut. Do you know anything about provision in your area? Could you ask the school?

You appear to have been dealt a duff hand in life. Unfortunately I can offer no help or advice, only sympathy.

I think you need to see your GP and pour your heart out as you have here. You have had, and are having, a very tough deal - life can be so unfair. You may well be depressed and understandably so, they may be able to put you in touch with support groups or respite care.

are you a regular on here OP? do you post on the SN board? I am sure there are lots of MNers on there who experience similar feelings of frustration and despair and would be an experienced 'sounding board' and willing to listen and advise

I get carers allowance. I do have friends but their children are all developing "normally" and sometimes I just feel like I don't want to be confronted with it or to face it all the time every day. Its the loneliness and the tiredness that get to me I think. Iv always been a social sort of person before this. I don't want to be a sap that sits at home all the time but don't feel like I have the motivation or the energy to face the battle everytime I go out. I don't really want respite for my dd. Which sounds really silly. I cant stand the thought of her being cared for by strangers or people that don't know her. I would worry and stress the whole time she is away as she has very complex needs and it would defeat the purpose of the respite.

Yanbu, it sounds really tough. I haven't got any useful advice, I just want to scream loud and clear to you that there is absolutely no reason at all for you to be feeling guilty!

You have been dealt a really hard hand

The first time she is in respite care you'll worry loads.

Then when she comes back and has had a fabulous time, you'll relax.

And then the next time she goes it will be easier. And the next, and the next and the next.

It isn't good for you to never have a break- not for you or your daughter.

Does the school offer any holiday club as respite care? Our local SN school has an excellent respite care service provided over the holidays. Many of the staff who work at the school staff it, so lots of continuity for the children.

How old is your youngest daughter? Does she qualify for pre school yet? Or could you afford a part time nursery place so you could get a few hours to yourself?

I know exactly what you mean about seeing normal children it can be upsetting. You sound a bit depressed i agree a trip to your gp would be a good idea. And what golf hotel said about respite it's totally true

You have very complex feelings about this that are preventing you being able to access respite or the help you need.

I suggest you get some help (counselling etc) so you can move to a place emotionally where you can.

The answer to your problems is not for you to get more stressed, beat yourself up more for not being able to carry on, have more panic attacks etc

You deserve more.

I know you don't want to but I think you'd really benefit from some respite because trying to keep juggling all these balls your self is not working and you'll end up running yourself into the ground until you're incapable of doing what you need to. Also a visit to the docs for yourself?

We have carers in our area who just come and stay over and are a bit like a mothers help for the night if you don't want her to go away from home, do you have anything like that.

I get your anger too OP on my darker days, having a son who's ended with some limiting illnesses (not to the extent of your family) when I felt I did everything 'right' to prevent it (breastfed, ate healthy, excercise, no smoke/drink etc). It really does feel unfair that those who flout this aren't the ones with the health repurcussions of their actions. It's irrational and sounds awful but I understand it, but it's not good to allow these thoughts as they'll drive you to madness.

I don't have experience in what you are living with. Only sympathy.

But I work for a charity that offers support to families with your difficulties. We offer short respite breaks that are geared towards fun. We don't just care for the children, we offer activities, indoor camping, creative clubs etc. might there be something similar in your area that you could view as an adventure for her?

Has the local authority done a core assessment, and is there a care plan in place? If not, I suggest you request one immediately, and also a carer's assessment. They must do an assessment within, I think, 40 days, leading to a clear care plan. That may lead to you getting respite and other care.

Also, I assume your dd has a statement which will have to be converted into an Education, Health and Care Plan. That means it should include detailed provision for care - it isn't enforceable, but the LA would have to have a very good reason indeed for failing to provide it.

I strongly suggest you post on the SN children board. Lots of kindred spirits and fellow sufferers there!

Could you pay a childminder to have your younger daughter a couple of mornings a week, while the older one is at school?

You're not be unreasonable at all and have my total sympathy. I also grew up in an autistic household but it was my parents and sister who are all high functioning autism so very different to your situation, but I can appreciate a bit how you feel about it. My eldest child is autistic so I get that, it's also following me around.

The one thing that has stopped me from going totally insane is my other special needs mums. I have spent years cultivating them, I take on ALL of them and keep the ones who I really get on with. This has taken me a long time but I now have a small groups of friends who I can literally say anything to anytime. We share a very black sense of humour, nothing is off limits to moan about. We help and support each other, sometimes one person really struggles, sometimes we all do. It was not easy to get this support network, I have been to every group going, I have practically stalked parents, I have struck up conversations in shops, parks, schools, everywhere (be careful, I will be asking you where you live next). I put a lot of effort into supporting them too but it pays off. I have 'let go' 90% of the people I met at all of these places but it has left me with a small group of intelligent women who get it, totally. And I feel like I am contributing something by being there for them too so it's good for my self esteem.

Everyone is different, but for me no support group, no antidepressant, no healthcare professional can restore me like a coffee, wine, cake, laugh with the other people who get me. I do all those other things too but I am rarely smiling as much at the end of them.

My 'normal' friends have their place too but I need to balance them out with my 'special' ones.

(Where do you live OP? )