The General Disabilities Topic

[Skyscraper]

We have an autism-specific topic, but there was talk of creating a general disabilities one, so here we are. I have a condition called Agenesis of the Corpus Callosum (ACC), which means I have the bridge of nerve fibres known as the corpus callosum missing from my brain. It usually connects the left and right sides, allowing mesages and signals to cross. Not having it causes me to take longer to learn or complete certain tasks, or find them difficult, and I also have Dyspraxia, Autistic attendences, hearing problems and a cyst in the cerebellum, all caused by the ACC.

Because of all this I'm prone to distress and outburts of anger, one of which happened this morning. I wanted to do something on the way to the cinema with my Personal Assistant (PA)/support, not realising that we wouldn't have time. I got really annoyed, shouting and swearing at my mum, in front of my PA. I went upstairs to calm down before we went out and my PA came upstairs and helped me calm down more, giving me hugs.
I calmed down more when we were out, and she supported me the whole time (She is amazing, and we've been working together for nearly four years now).

I feel down all the time, and though one of the reasons is lockdown, I think another is I get so annoyed at myself for having all these outburts. I'm terrified that one day I'll break the family up with my stupid behavior. Every time it happens makes me wish I was normal, and question why I'm here. I try to stay positive but it's really hard. I look totally normal until I have an outburst, get upset about a really small thing or find something difficult. I struggle to work out why my behavior is diffent at home to when Im out and about.

Does anyone else have outburts like this, and how do you control them?

 

[imanautie]

We have an autism-specific topic, but there was talk of creating a general disabilities one, so here we are. I have a condition called Agenesis of the Corpus Callosum (ACC), which means I have the bridge of nerve fibres known as the corpus callosum missing from my brain. It usually connects the left and right sides, allowing mesages and signals to cross. Not having it causes me to take longer to learn or complete certain tasks, or find them difficult, and I also have Dyspraxia, Autistic attendences, hearing problems and a cyst in the cerebellum, all caused by the ACC.

Because of all this I'm prone to distress and outburts of anger, one of which happened this morning. I wanted to do something on the way to the cinema with my Personal Assistant (PA)/support, not realising that we wouldn't have time. I got really annoyed, shouting and swearing at my mum, in front of my PA. I went upstairs to calm down before we went out and my PA came upstairs and helped me calm down more, giving me hugs.
I calmed down more when we were out, and she supported me the whole time (She is amazing, and we've been working together for nearly four years now).

I feel down all the time, and though one of the reasons is lockdown, I think another is I get so annoyed at myself for having all these outburts. I'm terrified that one day I'll break the family up with my stupid behavior. Every time it happens makes me wish I was normal, and question why I'm here. I try to stay positive but it's really hard. I look totally normal until I have an outburst, get upset about a really small thing or find something difficult. I struggle to work out why my behavior is diffent at home to when Im out and about.

Does anyone else have outburts like this, and how do you control them?

My preferred option when stuff builds up is to go someone quiet.

 

[RoyJess]

We have an autism-specific topic, but there was talk of creating a general disabilities one, so here we are. I have a condition called Agenesis of the Corpus Callosum (ACC), which means I have the bridge of nerve fibres known as the corpus callosum missing from my brain. It usually connects the left and right sides, allowing mesages and signals to cross. Not having it causes me to take longer to learn or complete certain tasks, or find them difficult, and I also have Dyspraxia, Autistic attendences, hearing problems and a cyst in the cerebellum, all caused by the ACC.

Because of all this I'm prone to distress and outburts of anger, one of which happened this morning. I wanted to do something on the way to the cinema with my Personal Assistant (PA)/support, not realising that we wouldn't have time. I got really annoyed, shouting and swearing at my mum, in front of my PA. I went upstairs to calm down before we went out and my PA came upstairs and helped me calm down more, giving me hugs.
I calmed down more when we were out, and she supported me the whole time (She is amazing, and we've been working together for nearly four years now).

I feel down all the time, and though one of the reasons is lockdown, I think another is I get so annoyed at myself for having all these outburts. I'm terrified that one day I'll break the family up with my stupid behavior. Every time it happens makes me wish I was normal, and question why I'm here. I try to stay positive but it's really hard. I look totally normal until I have an outburst, get upset about a really small thing or find something difficult. I struggle to work out why my behavior is diffent at home to when Im out and about.

Does anyone else have outburts like this, and how do you control them?

I think even the best and strongest of us have suffered from depression and outburst at some point in our lives, especially when life gets the better of us.

The uncertainly that Covid provides has put a damper on all of us. At the moment, I've made no plans, I'm just living day to day due to Covid.

I presume that you are a teenager? Your hormones may be up and down and all my kids went through the teenager stage. It doesn't help when what you want to do, clash with respecting the boundaries of living with your parents.

The world can be a scary and tough place for the best of us, let alone for someone living with a disability.

You are always welcome to PM me at any point if you need someone to talk to

 

[Skyscraper]

I presume that you are a teenager? Your hormones may be up and down and all my kids went through the teenager stage. It doesn't help when what you want to do, clash with respecting the boundaries of living with your parents.

I'm 26, although I'm behind in my developent due to the ACC, so I can act more like a teenager sometimes.
When children are high school age, their corpus callosum develops a protective shield around it, which helps with maturity. As I don't have the corpus callosum, that wasn't able to happen to me, so we don't know if I'll ever mature properly. I got bullied a lot in high school, and we now think it's because my "friends" couldn't understand why they had matured and I hadn't.

My preferred option when stuff builds up is to go someone quiet.

When I was younger I calmed down better alone, but now I'm older I find that having somone with me can help me calm down quicker.

 

[RoyJess]

Sorry to take so long to reply

I'm no medical/phycology expert.

Please correct me if I'm wrong. Part of me is saying that your disability is the route cause of your outbursts and that this is not your fault and that you won't have any control over that.

The other part of me is saying that despite your age, you have people around you, that because of your disability, that they still treat you like a child. I feel that your frustration is that you are not given the responsibility to make and undertake your own decisions.

I'm sure that your family and carers are understanding that you will have outburst which is part and parcel of your disability and accept that this will happen from time to time. But at the same time, you must feel frustrated with yourself for not to be able to control these outburst.

As a carer for my wife. Jess and I have never had a heated row. Yes we don't always agree with each other. But to have a full on heated row would be inappropriate for me to get into against someone that is weak and defenceless. We do our best for each other by working as a team and not against each other. Even if we don't always agree or see eye to eye, we try and do our best to compromise with each other.

It is very normal for a disable person to feel guilty that they are a burden on society, friends and family members.

It is also very normal for a carer to feel that they are not doing enough to meet the disable persons needs of the person that they are caring for.

 

[Skyscraper]

Sorry to take so long to reply

I'm no medical/phycology expert.

Please correct me if I'm wrong. Part of me is saying that your disability is the route cause of your outbursts and that this is not your fault and that you won't have any control over that.

The other part of me is saying that despite your age, you have people around you, that because of your disability, that they still treat you like a child. I feel that your frustration is that you are not given the responsibility to make and undertake your own decisions.

I'm sure that your family and carers are understanding that you will have outburst which is part and parcel of your disability and accept that this will happen from time to time. But at the same time, you must feel frustrated with yourself for not to be able to control these outburst.

As a carer for my wife. Jess and I have never had a heated row. Yes we don't always agree with each other. But to have a full on heated row would be inappropriate for me to get into against someone that is weak and defenceless. We do our best for each other by working as a team and not against each other. Even if we don't always agree or see eye to eye, we try and do our best to compromise with each other.

It is very normal for a disable person to feel guilty that they are a burden on society, friends and family members.

It is also very normal for a carer to feel that they are not doing enough to meet the disable persons needs of the person that they are caring for.

You are correct on both counts, and I do indeed feel like a burden on my familly. All the time. My dad has been working from home since the start of lockdown, so has seen more of my behaviour than he usually sees. That hasn't helped as he's not used to it all. Part of the issue is I sometimes get shouted at after I have an outburst, which make me even worse.
I do feel like my mum is holding me back, and my dad thinks so to. What makes it even worse is they sometimes have arguments about me, which makes me feel even more of a burden on them.

 

[RoyJess]

I do indeed feel like a burden on my familly. All the time.

That is perfectly normal for a disable person to feel like that. Remember you are not a burden.

Part of the issue is I sometimes get shouted at after I have an outburst,

I find this upsetting and concern to read. No one should be shouted at because of an outburst caused because of a disability. Unless you are in immediate danger of seriously harming yourself or someone else, shouting at some one that is disable is very inappropriate. The person concern needs to learn how to use positive reinforcement as oppose to negative reinforcement.

I do feel like my mum is holding me back, and my dad thinks so to. What makes it even worse is they sometime have arguments about me, which makes me feel even more of a burden on them.

My experience of my mother and various mother-in-laws that I've had over the years, is that parent can find it hard to let go of their children. You will always be in the eyes of your parents their baby, even when you are all grown up.

I left home and go marriage by the age of 20. My mother still thinks that she owned and ruled me. I was around the age of 28 before I stood up to myself and put a stop to my controlling mother.

Your parents need to learn not to argue in front of you or within hearing reach.

Can I ask you, do you suddenly get an outburst with out any warning? Or does it slowly build up to a point where you suddenly snap?

Communication on all sides here seems to be the key.

Stickman communication do various communication cards including a reversible mood wristband which might be of help.

https://stickmancommunications.co.uk/product/now-is-symptom-wristband/




Disability in the UK have come a long way. Back as recent as the 1970's disable people were institutionalised and were compulsory sterilize to ensure that they didn't reproduced. Despite coming a long way, we still have a long way to go to ensure that disable people have proper access and liberties as able people do.

 

[Skyscraper]

Can I ask you, do you suddenly get an outburst with out any warning? Or does it slowly build up to a point where you suddenly snap?

It depends on what the trigger is tbh. For example, if I'm playing a game on my PC and something bad happens or my computer misbehaves I can get annoyed straight away, whereas other times it might take several things within a certain period that cause me to meltdown.
Plus, if I'm already stressed or upset about something it's more likely. There are many different factors.

 

[pluk]

I think another is I get so annoyed at myself for having all these outburts. I'm terrified that one day I'll break the family up with my stupid behavior. Every time it happens makes me wish I was normal, and question why I'm here. I try to stay positive but it's really hard. I look totally normal until I have an outburst, get upset about a really small thing or find something difficult. I struggle to work out why my behavior is diffent at home to when Im out and about.

I know nothing about anything, but I imagine your ability to recognise your behaviour is an issue is a huge step towards finding a way to managing it better.

 

[RoyJess]

A couple of Disability programs. The first is about disability history. The second is about disability hate crimes.

Both are very disturbing to watch

https://www.bbc.co.uk/iplayer/episode/m000rh1g/silenced-the-hidden-story-of-disabled-britain

https://www.bbc.co.uk/iplayer/episode/m000rh4p/targeted-the-truth-about-disability-hate-crime