Feel sad and frustrated that we can never have a normal life

[lana88]

Feeling really sad and frustrated at the moment. I'm in my mid-20s and my birthday is coming up. I've been extremely busy this past year and was looking forward to going out for a meal with close family, as I don't spend much time with them.

I saw them today and when I mentioned it, my dad arranged a date for us to go to a restaurant but then my mum said she wasn't going because of my brother and therefore there would be no meal.

My younger brother is 22 and has autism. I have had to make lots of sacrifices throughout my life for him - his behaviour is very volatile and he will kick off in public over the smallest thing. As a child/teenager, I was never allowed friends over to my home, we have never been on a family holiday, we can't have days out as a family etc. I feel that my childhood has been very abnormal because of him and I have spent most of my life walking on eggshells in my own home in case I unintentionally upset him and cause a massive tantrum, in which he will self harm, lash out, wreck the house and just cause massive emotional stress.

I feel so sad that I can't have my family together for a meal to celebrate my birthday. Last time we tried to go out together, he threw a fit because a fly was in the same room and began shouting, self harming, lashing out at my parents etc. It's difficult to see a grown adult acting this way but he's had a lot of behaviour therapy and nothing helps. I'm starting to think it's not just the autism as this happens an awful lot when he doesn't get his own way. It's to the point where my poor mum doesn't want to go out in public with him because of the way he behaves. People stare at us all the time when he kicks off and in the past, people have even tried to intervene when he's been violent towards me in public.

I feel so fed up about this. I would just like to have a family meal to celebrate my birthday, like any other normal person. But what can I do? Just needed to rant, thanks for reading.

I come from a family with serious disabilities and totally empathise. In my twenties I found birthdays hard, as the onus was always on me to try to get friends out. Nobody was ever gonna say "We're all going out for a family meal" And you hate being the one to organise your own birthday.

I struggled with it but eventually decided to redefine what I wanted from a birthday. Did I want a card from my parents? Yes, very much! So I asked them to be sure to send me a card! (In fairness I doubt they'd have forgotten, but I was so used to being "back of the line" that I always felt I had to make sure of it)

My parents also had great difficulty going out to the shops, so all I'd hear about was moaning about how hard it had been for them to get me whatever small present it was....or they'd innocently tell me that they'd asked Auntie X to get me their present and they didn't even know what it was! That was hugely stressful and completely ruined the present.

But they have to buy petrol, there are always cards in petrol stations. So I absolutely 100% demand a card. Sounds pathetic but its my way of asserting my rights. A stupid card.

So I let go of expecting anything other than a card, and after that birthdays become a lot easier as you start to forget your previous expectations. Its about 10 years later now, and like someone said upthread, they really started to care more after I told them I didn't want this stress and was pulling back from birthdays. The guilt set in, and now they really try to find a lovely card, and they always pick a verse inside that applies to me, and they put about a million XXXXXOOOOO's inside.

So I get a very sweet card through the post and they feel brilliant cos they know its very much what I want , and I feel great cos its such a lovely card and I don't expect more.

As to what I actually used to do on birthdays? Whatever felt right. Some years I'd be lonely - then I used to arrange to meet people for lunch for as many days that week as I could. Evenings/Nights out were too stressful to arrange, I found. But if I'd seen lots of people that week I found I felt less lonely and so didn't care about the actual night itself. If something turned up? Good! If not? Chinese and a video!

Happy Birthday

OP, I'm sorry it must be so difficult.

Is he still receiving behavioural services?

I'm so sorry for your disappointment, OP, and for your lost childhood.

We saw this in our extended family. Older sister of autistic brother had a very sad time. She couldn't take part in after school activities because both her parents worked and they insisted that she was home to look after her brother when he was dropped off by the taxi.

He attacked any friends that came round to play, so her parents stopped allowing that to happen. She was rarely allowed to play with others because then her brother would have no one to play with. Family activities and holidays all revolved around her brother.

She left home as soon as she could. Her brother's behaviour became worse and worse and now he's in full time residential care because her parents are too old to cope with him. They expected her to take over his care.

The person with autism cannot help their condition but sometimes their parents need to remember they have other children with needs as well.

I wish you a very happy future, OP.

I think for your posts that you live with your parents and brother?

When you move out you will be able to make friendships without this always being a factor. Things will get better and easier.

I don't think you're at all unreasonable to want a little bit of normality, or want to be the priority occasionally.

I completely understand OP. DD has SLD and attachment disorder ( we adopted her at 2.5) her behaviour has, at times, made social events and holidays almost impossible. We had to take steps, as a family, to ensure that everyone got a bit of what they needed, in order to stop the rest of the family becoming resentful of her behaviour.

Now she understands that sometimes she has holidays without us (with a charity for young people with additional needs, or CenterParcs with my parents), sometimes DS and I have a week away by ourselves, occasionally DH and I have a night away together. Then we have times when we are all together.

DD has a great compulsion to control. We have taken that 'responsibility' away from her by repeatedly showing her that we are in control and she can trust us. This has taken years, but has given her the ability to relax.

Whilst on a recent holiday to France with her brother, I phoned DD to say hello. She said that she was missing us, but she wanted us to have a nice time. We had talked about why we were going without her and DH before we left. Of course she felt left out, but we need a break (like she gets on her holidays). I am so impressed with how she handles things now, but it has taken us so long to get to this point!

You are a young carer OP. You might not consider yourself one, but if you live at home then you will have been for most of your life because caring for a child with SN is a whole family thing. Could you look up local carers groups? ( SS may know of them) You will meet other people who will understand exactly the feelings you have.

I have a dd7 with Asd, s kinda understand a bit. Have your parents contacted social services for assessment for help and respite. I think tat would be a good idea.

Thanks for all your advice. It's nice to know that I'm not alone and others understand.

I lived away from home for 3 years at uni, 2 with a boyfriend and then I moved back home because the relationship broke down and I didn't have enough money at that time to have my own place. Hopefully I will soon.

It is difficult as I almost feel like everything revolves around him. My mum will constantly bring him up in conversation, even if he's not there. He will also interrupt conversations I'm having with her for attention. He will stand right in her face while she's speaking saying 'hi' over and over until she responds. It can be particularly hard if I'm telling her something important.

The thing I find the hardest is the unpredictability of his behaviour. When I'm tired in the evenings after work, the last thing I want is a tantrum that lasts for hours because of something tiny, like not liking something that is said to him. Sometimes he refuses to go to bed so sits on the floor punching himself until the early hours.

I think I will look into joining a support group. I don't think my mum is ready to face up to reality yet. We are moving house soon so I think I will try again then. She seems very positive about moving so may be in a better state of mind.

That's very sad, OP. I think sometimes people expect relatives of those with disabilities to behave like saints, and of course they're not. Why wouldn't you prefer a normal life in which you could have friends round for the evening or go out with your family to celebrate your birthday? I think it's totally understandable that you would get very angry with the person who's causing all the aggro, regardless of whether they can help it or not.

I have such good times with my support group. There are times when we've laughed so much, I ache! It shows how much we all need that release.

It is also through that group that DD has been invited on the holidays she goes on. We raise money individually and as a group for the charity too. I've made some friends for life there .

Lana88 this sounds very hard, but doubly so if you live there. I would really look at how you can move out, into a shared house, even live-in posts. It sounds exhausting living at your house and no wonder when it gets to your birthday, you are pretty fed up.

However, at the moment, you don't have a lot else going on, and I think that's where to start- moving out of home, going to some activities/clubs/hobbies/book clubs/walking groups- whatever it takes to get out there and make your own life.

I don't think the situation is going to change dramatically, I think joining a support group will help enormously but also living away and having a lot else going on in your life.

I say this as it wasn't at all realistic your parents and brother would be able to come out for a meal- and yet you are very upset about this. If you were out with your friends, and just had a nice lunch at home I think it would hurt a bit less.

You are still young, have decades of life to live- I think if you are not careful it could close in on you living at home and drag you down- I think getting out, and striking out on your own again is the answer to this, as sadly for your mum and dad, this home situation is unlikely to change in the near future.

Good luck- perhaps this birthday is a bit of a wake-up call in some ways.

I think it's absolutely normal to feel resentment sometimes, don't feel bad about that. I beat myself up for years before finally and openly admitting that yes, actually, I DO resent my severely disabled brother of robbing me of any childhood really. And a lot of adulthood too. He robbed me of MY parents.

He's in his 30s now, I'm older nearly 40, so things were a lot different in the 80s - less support for parents and non existent support for siblings.

He lives away from home now, my mother could not physically manage him anymore, he is not autistic but has challenging behaviour and spectacular meltdowns. He has a functioning age of about a 3 year old.

With regards to respite, is he able to make an 'informed decision' on his own care? I say that as because no, he may not want to go to respite, but for the sake of your family, he HAS to. He has to have some introduction to other care avenues.

Your mum needs to man up basically, and I know that sounds harsh but it's true. What would happen if she became ill suddenly or worse? Surely a transition will be easier for everyone.

My mum was in pieces when she let my brother go, she still is 15 years later (they have him home every other weekend), but they all have a better quality of life and they're all the happier for it.
He and they have holidays and days out, something that just didn't happen at all as a family.

I'm still the outsider though. Always will be

Maybe you need to make some enquiries and put together a long term plan.

Once your parents are not around, even if you're not doing the day to day care tasks, you will, I assume, be responsible for your brother's welfare and you ought to be allowed to help plan now for the situation you are going to have to deal with.

I don't think your DM is every going to be ready to face up to reality of her own accord, especially after a house move which will be traumatic for her and your brother. You're going to have to make her do that for everyone's long term well-being.

Make a long term plan which starts with increasing his time in day care and introduces short respite experiences at home. Show it building up and gradually becoming regular weekend respite and how this leads into long term residential care. You can ask the social worker to help you write the plan so that it is realistic.

Find a time when your brother is in day care and present the plan to your parents. Explain to them that you don't want to be trying to manage your brother in repeated meltdowns when the day comes that he has to move into a care home and doesn't want to. Also remind them that he may not be cared for in the way they want if he becomes violent towards care workers because he is not coping with the changes.

Explain that, if they want you to be prepared to support him, they have to act now to make the process less distressing for everyone. You could be hard and openly say that, if they won't start preparing the ground now, you will walk away rather than trying to manage an impossible situation when the time comes.

I know this sounds disloyal and cruel but they need to get their heads out of the sand. You simply don't wait for a crisis before preparing for things like this. It isn't fair on you to just leave it and hope that you'll cope when the time comes and it isn't fair on your brother to make the process more distressing than it has to be by not preparing for it.

I have two young people with Autism, it can be very draining as theyre often very controlling and will manipulate to get their own way - but what youre describing is a boy whose parents ave bent too far to 'keep the peace'. All theyve done is create an overgrown, spoilt child who probably hasnt ever had to.deal with the consequences of his own actions and will create merry hell for whoever has to care for him the day your parents stop.

Ie, we had an incident with dd recently over those bleddy loom bands, the ones she wanted werent in store and she was getting more and more wound up. The second she punched her brother on the arm I informed her she was being a brat and wouldnt be getting any and her choices were to carry on telling me to fuck off (( yes, really )) in which case she'd miss youth club. Or to get control of herself which she's capable of doing. She stopped pretty much instantly.

Living with an Autistic person neednt be hell on earth but it won't be very pleasent for anyone if bad parenting choices are made - I include the person with Autism in that.

Oh and anyone who thinks Autistic people won't give out' to get their own way is talking utter poppycock, I make exceptions for actual distress but crappy behaviour is swiftly nipped in the bud !

OP I know exactly the behaviours you are talking about as I see them in my 10yr old with ASD...

Manipulation is a good word but it doesn't really fit as they don't really gain anything but negative attention often - it's more of a defence mechanism triggered by anxiety. In fact 99% of his behaviours are driven by anxiety...

It's really bloody hard and frustrating. I am single parent and he has no siblings but my friends find it really tough to see those behaviours.
Turning it round is a long and ongoing game though.

I am going to brutal here because I would hope someone would with me. Your brother has now created a situation where life is how he wants it - any change is going trigger extreme behaviours and to some end your mum is head in sand because carrying on coping is far easier that dealing with some of the issues.
Some of that is not her fault... The services are quick to say they can do no more, that this is autism and you have to learn to live with it so you end up questioning your right to support and feel like a failure for admitting you need help...

OP this situation is the one I am trying to avoid for myself and because he's considered high functioning I am having to fight tooth and nail for scraps of support. It's not anyone's fault your family have ended up here - it just has...

Your mum needs some support - she must be exhausted and feel like a failure; autistic adult flying off the handle, arguing with husband and can't even have a positive relationship with her daughter - I know I feel like a failure when it's tough and I don't have the added pressures.

Be gentle with your mum, be there for her, let her talk about your brother, give her some head space and encourage her to have a Carers Assessment and support her through it... Your mum needs people to love her and care about her more because she is a carer so she can carry on giving the care.
Felt to me that your mum has become everyone's outlet and no one is hers

It's tough being a sibling - it must hurt so much to watch your family go through this

I have a DS with autism and I can totally understand your need to vent. It's frustrating for the whole family to have to accommodate the needs of a disabled family member, and I'm sure your parents have grieved for the loss of the 'normal' family life that I expect they hoped for. DS is an only child, but I know so many families with siblings who are struggling with balancing the needs of their disabled child with the other siblings.

One of the reasons we only have one ds is because I didn't think it was possible or fair to juggle with DS's needs with more dc - his needs are all-encompassing and have implications on all the things you mention - holidays, trips out, the relationship between me and DH, my work (and therefore family finances). I think I've heard of the Sibs group mentioned before so I can recommend them, and also perhaps some counselling for yourself. You need a space where you can express your thoughts without judgement. Siblings tend to take on a caring/accommodating role when there is a disabled child in the family, and that sounds like a frustrating position to be in.

Don't assume that your parents aren't doing enough to help. The help given to families with disabilities is very limited, even when there are severe needs. They are already offered some help from social services but it can be hard to get any more, or sometimes it makes the situation worse. In fact in my area I've found that the help offered is very poor and inappropriate for my DS's needs, so it's preferable for us to take on the bigger role in supporting his needs. That's harder work for us but I don't blame your brother for not going to the day centre for longer hours.

I understand. I really do.
I have one child with high functioning autism, and one with severe autism- he is violent and doesn't speak.

I wish people wouldn't post in ignorance, an adult with severe autism can absolutely behave like a toddler, in all probability its exactly how my severely affected child will develop.

But I also have a neurotypical daughter, so I completely understand how you want that time with your mum.

It's an incredibly difficult situation to be in but I sincerely believe your parents have to push the respite issue.

If your brother doesn't get used to it, it will only become more traumatic for him and your parents to try to deal with as they age and can no longer care for him.

Ultimately, as hard as it is to implement initially, respite will benefit all of you in different ways, and give you the chance to have that time with your parents individually.

It's terribly hard, but it is a disability that he cannot help or cure

Oh and ThreeCheeses

Bad parenting?

Really?

Whilst one hand I agree that you have to be absolutely ON the behaviours all the time and is something I do I am also very aware that what I do and how I do it can not and should not be transferred to others and they live in different contexts to me with different pressures.

The woman is coping and caring - she is not doing a line of coke every evening, leaving children in their own filth and having sex with 50 men a week and yet there it is an accusation of 'bad parenting'

No wonder she is reluctant to reach out for help

TucsonGirl Go research please.

OP I have four children, three with ASD. We have worked extremely hard to ensure that one set of differences does not impinge on the life of a sibling with another set of differences. It's hard but according to Ds aged 29 we have done okay. I feel for you, I really do, having to watch your parents being manipulated and not getting respite, wishing for family time that you've never had is also very hard. I think the advice about building your own life is good advice, along with perhaps looking into respite care yourself and then presenting it to the family may help. Of course your brother will say no, it's the Autistic default position but your mother needs to understand that it's a decision that can change.
Good luck and I'm sorry you're having a down day.

I sympathise.
I have a teenage dd with severe ocd and anxieties and it means we can't go out for family meals or holidays.
A lot of her anxieties are focussed on Ds and we are very conscious that her behaviour should not affect his life.

So we have separate holidays which work.

I will admit that I have had moments when I wished she was not part of the family.

Did I say 'bad parenting' Doris ??

No, I said theyve bent too far but you just stay glued to your high horse Probably because they didnt know how to handle him in other ways, or at the time it's been easier.

It's taken years of hard work, wasted money and public humiliation for us to be able to enjoy days out etc like other families but it's paid off.

God knows, I know how hard it is parebting children with sn, it's alsi possible to make the wrong choices we arent venerable saints us carers.

Actually, in all of this it's the brother I feel sorry for, it sounds like his parents have been badly supported. OP, is your mum in contact with the NAS ??

Yes the NAS run the day centre he attends. I feel for my mum because I know she wants the best for us and she is often feeling down. It doesn't help that she has a sister who is in the opposite situation (no dependent children, complete freedom) and I feel sometimes that she rubs it in a bit about how she can do what she wants and never offers any support.

I do think my parents could be a bit harder on my brother. He is obsessed with money and despite being given a weekly allowance, he has stolen mine and my dad's card details twice and ordered games and DVDs online, only to be told he could keep them as it would cause a tantrum if they were sent back. I feel that this was dealt with wrongly as if have the message this was ok. He wastes every bit of money he gets on arcade games and this worries me. It's £30 a week sometimes.

www.carersuk.org/help-and-advice

www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/direct-payments

call them - they are very helpful

put your feet up

So your parents are harder on him after years of not being and he either self harms to such a degree that he is hospitalised or he seriously hurts a family member who also cares for him...

That's what will be motivating them to not do it and it's a REALITY - I have been hurt by my son, my school think it's a matter of time before I am seriously injured and yet the services shrugged and said there was no capacity to support...

I am considered 'exceptional' as a parent by the professionals - I manage him well, I can do no more but his needs are greater... Other parents have turned around and said they won't live like I do. Don't blame them if I am honest as I just want to be a bog standard mum

Your mum and dad are NO different - the only difference is I am continuing to ask / push for his support whereas your parents appear to be carrying on coping... Not surprised it's an exhausting process

It's so easy to look into a situation and say 'well to fix it I would do x,y & z' but to look into a situation and feel for the people in it and have empathy is very different and is possibly what your parents need...

What a desperately sad and demanding situation for you all. Of course YANBU, life has dealt you and your family a really shitty hand and it will always be hard to make the best of it.

To the person who posted about parents dying young, I'm so sorry for your loss, but it's just not fair to tell others to buck up just because you have. A vibrant and happy family life, even if cut cruelly short, equips you far better for adulthood than decades together if those decades are full of chronic stress and unhappiness.

Something that concerned me, OP, is that you've found it difficult to maintain friendships. Being sociable and socialised is a skill that we normally learn as children, but the dynamics of your family life deprived you of that learning experience when you were younger, and you're still feeling the loss now.

Yet good friendships will help you manage the difficulties of your family.

Could you perhaps get involved with team sports or amateur dramatics? You'll get used to being part of a company of people, and hopefully common interests will lead to friendship.