Feeling trapped, selfish and stuck.

[WhiteLion]

Hi, I'm new here, just came across this website by chance via google. I'm not a parent but this might be somewhere I can hopefully get advice.

I am posting about my older brother who is 21, so this seemed the most fitting place to but this post. He attends a residential place during the week (he has severe autism) and it started out fine. But he has become a nightmare. (This is where I start to feel horrible). He's been there 18 months now, and has really began to regress. He has become very violent, he's tall, strong but lacks the ability to communicate. His writing/reading has also regressed. I'm saying this because I don't know if the place he attends is to blame for this behaviour.

Previously, he was never, ever violent - very placid. But now at weekends, he will burst into rooms and just be violent and hit and kick We don't feel we really get a break, as my Mum works all week. I am at college full time. I feel horrible typing this, but I actually dread weekends and him coming home, and I feel guilty if I go out with friends leaving my Mum to cope by herself. There is no family nearby to help.

Sorry that this is long and a bit unclear. Any advice/help would be greatly appreciated.

[milou2]

Hi, just a little hallo. I have read your post about how things have changed for your brother, and as a natural consequence, for you and your mother. Since no one else has answered yet I'll have a go.

Being aware of how things are is a start. Writing down raw data about how he behaves and how you feel day by day/hour by hour is a start too.

How desperate do you feel? Do you have a number for the NAS? How unsafe do you feel in the house, is Christmas going to mean longer periods with him at home?

Looking at it from another angle, have there been times in the past when he has changed from his normal placid self? If so what triggered these changes? Have there been changes in the people around him? Different smells/sounds/...sensory stuff.

I'm talking off the top of my head here, is there any person around him who could be being pressurising or over firm towards him. (My son reacts very badly towards conventional parenting and if he feels alienated or emotionally distanced he becomes violent and unpredictable, agitated, scary).

I have 2 boys 11 and 14 with high functioning autism, so not the same experience at all.

Keep talking.

[Davros]

It is clear that you and your mum need more support, and so does your brother. Does he have to come home each weekend? Maybe he is finding it stressful and confusing to come and go each weekend. He clearly needs an assessment and staff at his placement and local professionals should be supporting all of you. In the meantime can he stay at his placement at the weekend?
I think there could be various things going on here. He is living much more in an "ASD environment" and may therefore pick up habits and behaviours. I have found that my DS, who is 14 and has been at residential school for 2 years, has developed some behaviours which I put down to his environment and peers. No matter how good the provision, this is likely to happen and is one of the prices you pay. It could be that his behaviours (and those of others) are not being managed well and are being reinforced by staff, or by some staff. I think you need some sort of crisis meeting as this can't go on. Your brother cannot continue to behave like this, whether its at home or not. You and your mum cannot continue to deal with it alone. You must not feel guilty at all, what you are all going through is way above and beyond anything remotely acceptable. Everyone sounds unhappy, including your brother. One other idea, I know lots of people will suck their cheeks but I often mention this, does he take any medication? When behaviour and anxiety becomes completely unmanageable it can work very well without taking away his personality, but giving him back some ability to participate. I just hope you can find a way to get someone to help you all. I wonder if your mum is resistant to him being in residential care fulltime or getting more support at the weekends? If so, please help her see that it is best for everyone to at least try something different. But I may be speaking out of turn, she may well want this sort of change but has been stonewalled. Best of luck, please post again.

[WhiteLion]

Hi, thanks for the replies

At Milou - The day/by day data thing is a good idea I'll try it next weekend. We are pretty desperate. The residential place he is at is run by NAS. And yes he will be staying here over christmas which means he will probably behave worse as it is a disruption to his routine. I feel safe as long as I am several rooms away! The only people who could be being overfirm with him are the staff at his place - other than that no.

At Davros - Hi, he's been to see several psychiatrist and all suspected him to have epilepsy but he's clear of that. Now they seem to all but haven given up on him. From January he is going to start staying there 1 out of every 4 weekends which can only be good. One thing the psychiatrist did suggest is he lives in one of the flats on his own, yet the staff just moved him into a flat with two other ASD both with severe behaviour issues which is annoying. About the medication thing, I am only 18, I don't really have any input on that at all - I think my mum is reluctant about it. We are all in need of sorting this out. Once again, we are fighting social services for the extra help - but they don't want to provide it.

[donkeyderby]

Sorry, only just spotted this message as this bit of the SN forum is too quiet to check much.

As well as the good suggestions above, have you tried contacting the Challenging Behaviour Foundation? Their remit is giving advice on children/young people with severe learning disabilities and challenging behaviour, and they have a useful email forum.

I really hope things improve for all of you.