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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

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

89 replies

lana88 · 14/06/2014 20:58

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.

OP posts:

ImperialBlether · 14/06/2014 21:01

I'm so sorry. It must be very difficult for you. If your mum does leave the house, does anyone stay with your brother or is he OK staying on his own? Are your mum and dad together?

LadyKooKoo · 14/06/2014 21:03

Your brother can't help the way he is. After 22 years of being his brother, you should have realised that by now. If you have never had any of the 'normal' aspects of childhood then that is on your parents shoulders, not your brothers.

Original poster

lana88 · 14/06/2014 21:03

My parents are together but they argue a lot, mostly about him. He lies a lot about my dad to get him in trouble with my mum because he knows she will take his side :(

He can never be left on his own, so my mum always stays with him. She is his main carer. So he has to come out with us everywhere if we go out as a family. They have looked into respite care but he said he didnt want to go, so they have dropped the idea completely.

OP posts:

TiredFeet · 14/06/2014 21:04

That sounds very tough. Do your parents get any help with him? They must need a break too. And of course yanbu to wish you could do 'normal' things with them

TeenAndTween · 14/06/2014 21:05

YANBU.

Does your brother live at home?
Do you parents care for him full time?
Do they get any respite care?

If the answers are Yes Yes No then your parents need help.

If not then maybe sometimes your brother needs to be excluded from family gatherings, so other people can be the focus for a change?

I have friends with a child with autism. They go to great lengths to ensure the other children get normal experiences.

Original poster

lana88 · 14/06/2014 21:05

I know that he can't help it. I am very kind and understanding towards him but I can't help feeling sad about the situation. It's draining to care for someone who never seems to appreciate what you have done for them and is often volatile towards you. I think it's hard to understand unless you've lived it.

OP posts:

ImperialBlether · 14/06/2014 21:06

LadyKooKoo, the OP has said that he IS responsible for some of the way he behaves. Just because he has autism it doesn't necessarily mean he can't help the way he behaves at all.

TeenAndTween · 14/06/2014 21:07

Seen your update.
What will happen when your Mum gets too old to care for him? It seems to me she needs help to understand this isn't sustainable and it would be better for your brother to get used to other carers.

Sirzy · 14/06/2014 21:07

Do your family not get any respite?

TucsonGirl · 14/06/2014 21:08

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?

harriet247 · 14/06/2014 21:08

That was really harsh ladykookoo.
Of course yanbu at all op. Sending you a big okd hug. Do you have friends you can go to lunch with instead?

Leggingsandtrainersnonono · 14/06/2014 21:09

This reply has been deleted

Message withdrawn at poster's request.

DickDasterdly · 14/06/2014 21:09

I am not surprised you feel sad. It's a sad situation for everyone involved. I don't think its wrong of you to feel this way from time to time. Is it possible to do something else such as going on a picnic or having a BBQ?

Are you able to go out just with your Mum sometimes?

Do you have you own support apart from your family? As you get older and have your own 'family' you may feel it easier to deal with your brother.

I hope your Mum gets all the support she can.

I hope you find something nice to do on your birthday

LizzieVereker · 14/06/2014 21:10

I am sorry, that must be hard. I always think it must be very difficult to be the sibling of a person with severe SN. Well it's difficult for everyone, isn't it: the person with SN who is distressed a lot of the time, the sibling and the parents. It must be hard to have to be understanding all the time. I can see why you would need a vent.

brokenhearted55a · 14/06/2014 21:11

This reply has been deleted

Message withdrawn at poster's request.

Sirzy · 14/06/2014 21:12

TucsonGirl

Unfortunatly for some it does.

Original poster

lana88 · 14/06/2014 21:12

He goes to a day centre for 3 days a week. It was meant to be from 9-5 but he refuses to go for that long, so it's more like 9.30 - 3. That is currently the only respite they get so he is at home a lot.

The only thing he ever wants to do is play computer games/consoles (he has a gaming addiction) and he gets very angry when he is asked to come off of a game to do something else, even something like wash or dress or go out anywhere. We had a behavioural therapist but they couldn't do anything about it.

I have tried to speak to my mum about the future. She says that when she gets old, he'll be in full time care but she doesn't seem to realise that it won't just happen overnight. They took him to look around a respite centre, with the plan to get him used to staying away from home some weekends for extra respite, but my brother refused to look around the home and my mum felt so guilty she said she wouldn't look into it anymore.

OP posts:

piemashandliquer · 14/06/2014 21:13

Yanbu, it must be frustrating and very hard for you. It is nice that you want to go out with your family, many people your age just want to be with their friends. I hope you manage to enjoy your birthday despite your family troubles. Vent away.

HumphreyCobbler · 14/06/2014 21:13

Oh OP that sounds so hard. It is not unreasonable to expect your needs to come first sometimes too. The situation with your Mum not accepting any help with your brother is worrying too, what happens if your Mum gets ill or unable to cope?

Does your brother have no social worker at all?

Famzilla · 14/06/2014 21:13

OP I understand. My brother is a year younger than yours (and judging by your username I am a year younger than you) and has autism, albeit high functioning.

It was very volatile growing up (am actually NC with my family now but for different reasons). I always felt like everything revolved around him & his tantrums. He would physically beat me and also make up a lot of lies about my father and I to manipulate my mother. I'm sorry if that's offensive but that's what it was, manipulation.

It's horrible, there is nothing you can do and no one who has any real idea what it's like would ever judge you for feeling "robbed" of the simple things most take for granted.

itiswhatitiswhatitis · 14/06/2014 21:13

Life really sucks sometimes. This sucks for your mum and dad, for your brother and it sucks for you. It's ok to feel sad about it. I have a sibling with autism and a son with autism and once in a while I feel like stamping my feet and saying "it's not fair"

TheXxed · 14/06/2014 21:15

Lana I sympathise with your situation, but I think by viewing it from another angle you won't feel resentment to your brother.

Growing up I never went on family holidays or days out.I never had friends over (my own choice house was always a mess) My dad spent and significant chunk of my childhood in prison. For a long time I was angry about this it ruined my relationship with my mum.

Now I understand that there is no such thing as a normal childhood and the great thing about being an adult hood is that I can make choices for myself. I have since gone onto get a degree from a Russell group university, traveled across southern Africa and focus on the good things in my life.

Sirzy · 14/06/2014 21:15

What a tough situation :( Can your mum work with the respite centre to try to come up with a plan to get him used to things and more willing to co-operate? Could they do some home visits with him so he knows the staff?

I hope you manage to find a long term solution which works for you all as hard as that may be

hollyisalovelyname · 14/06/2014 21:19

Lana you pior darling.
You are allowed to vent.
I think your poor mum has mishandled the situation a bit- nit being there for you also but it must be so difficult.
She needs to get respite ( no doubt easier said than done) what if she falls ill or has an accident?
I am ( very) ashamed to say I never realized what a friend (in my youth) must have been going through with her autistic sibling. I just thought she ( friend) was rude as I was never invited to her home.
Lady KooKoo that was mean.

Original poster

lana88 · 14/06/2014 21:20

I'm not always resentful...I think I'm just having a down day (I do this from time to time.) Most of the time I am very happy and cheerful, sometimes it's a bit of a cover up tbh. People at work and most friends think I'm very carefree and smiley with no problems. I do appreciate the good things in my life - and there are lots of good things really. I just wish sometimes that things could be different.

There is a social worker involved. He offered the respite care which was turned down. I feel sorry for my mum because this has an an effect on her. She is quite depressed, socially anxious and introverted most of the time. I try to do things alone with her (like shopping trips etc) and that does get her out of the house and cheer her up sometimes. It's difficult though because my brother is very possessive over her and becomes angry if we go out alone.

OP posts:

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