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.

Lana, I'm so sorry to hear this. Although my situation is very different from yours, I understand, to a degree, how you must be feeling as I also have a sibling with a disability. I don't know whether you will find this useful but I've recently discovered a Facebook group called SibNet which is for siblings of people with disabilities. I can't tell you how amazing it felt to realise that I'm not unusual in feeling sad and guilty about my sibling's situation and the effect it has on our family.

I have reread my post and it hasn't come across the way I wanted it to.

Essentially what I am trying to say is your are perfectly entitled to your feelings. the way you are feeling is normal and I have experienced it myself.

When i was younger I did not process my emotions in a healthy way and this affected a lot of my relationships. From reading your posts its clear you are not like this. Finding somewhere appropriate to vent your frustrations is great idea and I hope it helps you to release any pent up emotions.

Also I really hope you enjoy your birthday.

Seems like you need to make your own plans for your birthday not involving your family. Is there a way you could celebrate with them also in a small way maybe a a meal at home or BBQ. Whatever happens i hope you have a lovely day.

It may well be the autism, autism causes severe anxiety and a need for control, and yes , getting own way.

It jut be hard for you. But I wouldn't get angry.

I hate to break it to you, but very few people have a 'normal' life. Most people have something going on that makes their life challenging. My parents died when I was young, so no 'normal' family dinners for me either. But I can't change what has happened in my life, and moaning about it won't make it any better. A friend once gave me a photoframe which said 'friends are the family that you choose for yourself' and it's true. Make you own 'normal'. Happy Birthday, whatever you choose to do on the day.

" i don't think the way he acts is down to autism. Autism doesn't cause 22 year old men to act like toddlers. Are there ever any ramifications for his actions?"

Oh yes it totally can.

His autism sounds severe.

Seriously people should read about autism before jumping in and blaming lack of discipline

This is really sad op and must be very very hard on your parents too. You know your brother can't help it but your feelings are also completely valid.

Midnite I completely agree with your view and if I am interpreting this correctly I think the OP feels the same way but is just having a difficult day.

I'm not angry. Didn't mean to come across that way, if I did. More sad.

I would love a group of close friends that I could do 'normal' things with, but things haven't worked out that way for me. I have had good friends at points in my life but we always ended up drifting apart due to various circumstances.

I made lots of friends at university when I lived away from home but when I moved back to my home town (quite a distance away), we lost touch. I tried to organise meeting up but they moved on. I have not managed to make friends through work so I only have 1 or 2 friends now (from school/uni), but I rarely see them due to one working abroad at the moment and the other being busy with work too. I have lots of acquaintances I'm friendly with but none I would feel close enough to invite on a mini break or out socially.

I plan to join some groups when I have more free time. Perhaps that will change things.

Time out is the answer.

Maybe counselling.

Don't go down road of blaming him, anger isn't healthy for you to hold and it's really not his fault or your parents.

But make time for you.

I wish you all the best

I x posted.

Yes, making your own life is best answer, and even moving out

Sorry..not clear if you have moved out or live with him

I think you are perfectly entitled to fel sad that your family is not as you would wish it to be.
I think blaming your brother or your mother is not particularly helpful.

It's the easiest thing in the world to peek in at someone else's life and think you know what is going in.

I am immensely grateful that my son, as he approaches his 21st birthday, completely understands that I adore him and that we will do everything we can to be with him.

The idea that a person with autism is manipulative in order to minimise their sibling is a bit odd. Most of the young men I know who have asd don't have that intent.

YADNBU. Your feelings are very normal and totally understandable. For various reasons my family also lead a life less ordinary and there are times I feel so sad that we can't do things that other people take for granted. It doesn't make a bad person to have these feelings. They usually occur when things are really bad and I challenge anybody to say they wouldn't feel exactly the same.
I recently read a book called Wonder where the main character was a boy with a very serious facial disfigurement. There were chapters written from the perspective of people who were related to or friendly with the boy. The chapter written by the boy's sister bears a lot of similarities to the feelings you've described. I really recommend you should read it.
I think you should focus on yourself now. You are so young and have so much life ahead of you. Your life's been tough up to now but it's up to you to make sure you have a great life. Work on relationships outside of your family and give yourself a break from your family's issues. The very, very best of luck.

Yanbu. I can see how hurtful that is.

I have a ds with severe asd and lds. I also have a dd. I know can't shield her from the impact of having a sibling with such a severe disability. I expect she will miss out on whole family holidays and it is already getting tricky for her to have friends home.

At the moment I can't believe a time will come when I won't be able to take my gorgeous girl out to dinner on her birthday. I really hope I can be there for her too and not get too beaten down by it all. She deserves to have her mum's love and attention and so do you

Could you and your Dad have a lovely meal together? I expect he'd welcome a break and the chance to spend some time with you on his own.
Is there some shared activity you enjoy that you could both do together?

I am sorry but Autism can cause grown aduilts to tantrium like little children and a lot of people with autism cannot help this sort of behaviour (Autism is such a huge sepcetrium it covers people that will all need 100% suppervision to people hardly effected by it in outward apprences so no two causes of Autism are the same)

I have a verson of Autism called aspergners syndrome and I lead a normal life with only slight adjustments so I can appear "normal" but my older brother is in Aduilt care as he has simlear behavour to your brother but is much more violent if things become stressful for him (He is not a bad person he cannot help these outbursts)

so basically do not judge people with autism with a single brush like the poster that said autism doesnt effect people like that as it does and to the OP I understand your need to vent but please dont blame your brother too much as I know its hard for you to have dealt with it for your childhood (I was in the same boat as you with not been able to have friends over etc) but he possibly cannot help his behaviour

But do try and get help/ support for your parents as it does sound like they are struggling and see if you can agrenge time to see your family when hes at the day centres etc but you have my best wishes and support and I hope you can get support to help achive a better family life

It sounds like a really tough situation. My Dsis has profound learning disabilities and physical disabilities too so I have some understanding of what it's like, particularly the worries about the future.

There is an organisation called Sibs Uk which supports brothers and sisters of disabled people and might be able to help you and your family with some of this. www.sibs.org.uk/adult-siblings

I know little of what you are going through with your brother, but perhaps for your birthday, you could take a day off work and go out with your mum whilst your brother is at his day centre? I know it isn't the family meal you wanted but it might be nice and it sounds like your mum might need the break. You could make a regular thing of it whenever you have enough leave, it might help you to develop your relationship with your mum that doesn't completely revolve around your brother's needs.

It is sad, op.

I have four siblings, two of which have schizophrenia. My mum and dad have a very dysfunctional and violent relationship and many a time I have wished for a normal family (actually, as a child I just wished my dad would die, seemed the easy way out). No wonder really that my brother and sist have schizophrenia. They also have a muscular disease which is the opposite of muscular dystrophy and, while not ultimately fatal, they have difficulty moving around.

I moved to the other side of the world. I have my own family, and that does compensate a lot. Of course, as it turns out, my own family isn't perfect; but for all our issues, we have a normalish family life.

I second trying to arrange lunch while your brother is out during the day. You've got every right to vent, autism is a truly terrible disease. I always wonder what if had been me who was schizophrenic rather than my siblings and how I guess I am really lucky... Here but for the grace of god go I, I guess.... I do hope you can have a happy birthday (x)

I recommend finding a sibling support group where you can have space to vent with people who truly get it. I am in one run by rethink as my brother is schizophrenic. They run in London and Bristol and soon in Birmingham, there is also a charity called Sibs that can help.
You are entirely allowed to feel the way you do, being a sibling of someone with serious additional needs can suck!

Autism isn't a one size fits all thing. There is such a wide spectrum. Some people can have autism and you wouldn't know, some have severe behavioural problems and some cannot communicate. I know someone with autism that cannot speak.

Op I don't blame you for feeling sad. it is completely understandable.

I don't think it's unreasonable to feel resentful and it is perfectly possible that your brother's behaviour would be more reasonable if your DM was prepared to challenge him a bit more.

The fact that he has Autism means that he finds change difficult but that doesn't mean that he shouldn't ever have to face it. He needs help to manage the emotions that change causes and to realise that it is possible for him to survive it. At the moment he is responding to change by becoming anxious and going into meltdown because he fears a lack of control. The threat of becoming angry allows him to maintain control and avoid change.

It is an unavoidable fact that he will need to be cared for by someone else at some point and your parents could make that transition easier for him by beginning to introduce respite now.

They need to stop avoiding change themselves and work out how to make it manageable for him. Could they get a worker from the day centre to come to your home or maybe get a worker from the respite centre to spend time with him at the day centre?

Respite doesn't have to be a whole weekend from the outset. It doesn't have to be an overnight at all. It could start with spending some time gaming at home with a carer for a couple of hours while your parents go shopping.

Once respite becomes part of the routine it is no longer a change and no longer a challenge. It becomes a positive part of everyday life for all concerned.

If your parents could do this they would be helping him later on, giving themselves a break and freeing up time to spend with you. Everybody wins.

The problem is getting your DM to pull her head out of the sand and face up to reality. If she's determined not to do this, you may want to consider withdrawing a little to protect yourself and waiting until she's ready.

My DSIS does not have Autism but she is the precious little flower whose life is always harder than anyone else's and every family occasion has to revolve around her. I found that taking a step back and refusing to engage, backing out of occasions when everyone started to flap about making them right for her and changing the subject when her name came up helped to refocus people's minds a little. It also meant that I didn't spend so much time with gritted teeth and my BP through the roof

In the meantime, could you meet them for a nice lunch out while he is at the day centre?