autizmussal és ADHD-val kapcsolatos saját élmények

It's a different experience for different levels of need. Some of us might need only low support, or support with specific tasks. Others need higher support, and there are many disabled people who need assistance with most or all daily tasks.

Dependence is a scary thought for some people, but for many it's a part of everyday life. Some level of dependence is common for disabled people, and needing carers or support workers is not as uncommon as people think.

Disability conversations often don't discuss carers, or don't allow people to bring their carers into the conversation. Some people may need assistance from carers or support workers to be in a physical place for community. Some might need help using online spaces like tumblr. Some might need help communicating. Carers are a part of life for many and talking about carers is important.

Carers can be positive, supportive and good relationships. But can also be stifling or even abusive. Care is complicated, and people should be able to talk about it.

My post is about being disabled and needing the assistance of a carer or support worker. Carers are not always formal, many carers are not paid and care for loved ones, but it is still a higher level of dependence than society considers acceptable. Many of us have carers or support workers who are paid to take care of us. It might be hands-off care like taking to appointments, helping with medications, household tasks, life admin, and more. It might be hands-on care like feeding help, lifting for transfers between wheelchair and other surfaces, bathing, dressing, medical equipment maintenance, and more. For most of us we need multiple types of care, and it can look like different things.

But if you need the support of a carer and you don’t get it, for a lot of disabled people, we can't make up the difference no matter how hard we push ourselves. People suffer. Become sick or injured. Are forced to live without basic nutrition, hygiene, or movement. People die. They have died, no matter how much they pushed themselves. Support needs can't always be overcome, no matter how dire the consequences.

Automatic translation is not very good with Hungarian. This is more like what I wrote:

"And if you need support but you don't get it, although you are also a carer".

What I wrote is not a whole sentence, it should be something like: And it's hard if you need support but you don't get it, although you are also a carer".

I think I got what you meant, I would like to clarify my viewpoint:

My reblog is about myself. I am a late diagnosed neurodivergent mom of a neurodivergent boy. I have supported him his whole life, in different forms according to his age. He's 22 now and still needs my care. I am 51 and never really got any support for my autism and adhd. Of course it means I have been very high functioning to get married, educated, working, have children and raise them.

But is cost me a lot. I have been exhausted for 20 years, but for the last 2-3 years it got to a point where I can only be active for 3-5 hours a day (if I overdo it I have to rest for a few days). I don't know if it's burnout or chronic fatigue or something else, or some kind of combination of these, but it really is disabling. If I got support earlier it wouldn't have got to this. I don't know if it will ever get better (certainly hope so), but right now I can only do the bare minimum to keep things going.

Thanks to my profession we can survive with the little work I can manage, mostly from home. I am ashamed for how much chores I am postponing, some parts of the apartment are quite dirty. I have very little energy left to socialize and almost none for hobbies.

So. I understand it is much worse for others but it's still not so good for me and I was feeling a little sorry for myself :)

You're very right about carer burnout. It's such a major problem that especially informal carers face, there's often minimal support for people who are unpaid carers even though they're also expected to be wonder-carer and have everything perfect. Especially where the carer themself has a disability. You don't need me to tell you any of that, apologies if that was a ramble, but I really agree that carers don't have access to enough support, and that affects their ability to care for their person as well as themselves.

It's a different experience for different levels of need. Some of us might need only low support, or support with specific tasks. Others need higher support, and there are many disabled people who need assistance with most or all daily tasks.

Dependence is a scary thought for some people, but for many it's a part of everyday life. Some level of dependence is common for disabled people, and needing carers or support workers is not as uncommon as people think.

Disability conversations often don't discuss carers, or don't allow people to bring their carers into the conversation. Some people may need assistance from carers or support workers to be in a physical place for community. Some might need help using online spaces like tumblr. Some might need help communicating. Carers are a part of life for many and talking about carers is important.

Carers can be positive, supportive and good relationships. But can also be stifling or even abusive. Care is complicated, and people should be able to talk about it.

My post is about being disabled and needing the assistance of a carer or support worker. Carers are not always formal, many carers are not paid and care for loved ones, but it is still a higher level of dependence than society considers acceptable. Many of us have carers or support workers who are paid to take care of us. It might be hands-off care like taking to appointments, helping with medications, household tasks, life admin, and more. It might be hands-on care like feeding help, lifting for transfers between wheelchair and other surfaces, bathing, dressing, medical equipment maintenance, and more. For most of us we need multiple types of care, and it can look like different things.

But if you need the support of a carer and you don’t get it, for a lot of disabled people, we can't make up the difference no matter how hard we push ourselves. People suffer. Become sick or injured. Are forced to live without basic nutrition, hygiene, or movement. People die. They have died, no matter how much they pushed themselves. Support needs can't always be overcome, no matter how dire the consequences.

Automatic translation is not very good with Hungarian. This is more like what I wrote:

"And if you need support but you don't get it, although you are also a carer".

What I wrote is not a whole sentence, it should be something like: And it's hard if you need support but you don't get it, although you are also a carer".

I think I got what you meant, I would like to clarify my viewpoint:

My reblog is about myself. I am a late diagnosed neurodivergent mom of a neurodivergent boy. I have supported him his whole life, in different forms according to his age. He's 22 now and still needs my care. I am 51 and never really got any support for my autism and adhd. Of course it means I have been very high functioning to get married, educated, working, have children and raise them.

But is cost me a lot. I have been exhausted for 20 years, but for the last 2-3 years it got to a point where I can only be active for 3-5 hours a day (if I overdo it I have to rest for a few days). I don't know if it's burnout or chronic fatigue or something else, or some kind of combination of these, but it really is disabling. If I got support earlier it wouldn't have got to this. I don't know if it will ever get better (certainly hope so), but right now I can only do the bare minimum to keep things going.

Thanks to my profession we can survive with the little work I can manage, mostly from home. I am ashamed for how much chores I am postponing, some parts of the apartment are quite dirty. I have very little energy left to socialize and almost none for hobbies.

So. I understand it is much worse for others but it's still not so good for me and I was feeling a little sorry for myself :)

It's a different experience for different levels of need. Some of us might need only low support, or support with specific tasks. Others need higher support, and there are many disabled people who need assistance with most or all daily tasks.

Dependence is a scary thought for some people, but for many it's a part of everyday life. Some level of dependence is common for disabled people, and needing carers or support workers is not as uncommon as people think.

Disability conversations often don't discuss carers, or don't allow people to bring their carers into the conversation. Some people may need assistance from carers or support workers to be in a physical place for community. Some might need help using online spaces like tumblr. Some might need help communicating. Carers are a part of life for many and talking about carers is important.

Carers can be positive, supportive and good relationships. But can also be stifling or even abusive. Care is complicated, and people should be able to talk about it.

Someone may have a special interest in a show, but instead of that meaning that they will talk about that show often, it may mean they watch that show extremely frequently.

Happy Autistic Pride Day from a proud autistic!

June 18th marks Autistic Pride Day, made by autistic people for autistic people. It's important to be proud of who you are.

Whether autism helps or hinders you, it's a part of you. For me, it does both, and I accept that. I keep going on days when I can, and rest on days when I can't, and I feel no shame for that. Self-accommodation is so incredibly important.

de nem olyan hogy minden izmom el van ernyedve, hanem kicsit felhúzom az állam, amitől a szám elvékonyodik és lefelé görbül, kicsit hunyorítok és összehúzom a szemöldököm.

most hogy elkezdtem figyelni, rá kiderült hogy nem is tudom hogy mi a középső helyzet. ha teljesen elengedem az állkapocs izmát, bamba kifejezésem lesz. ezek szerint tartani kell valamennyire, de nem túlságosan? mások hogy tartják a szájukat? lazán összeér a fogsoruk, vagy marad pár mm hely?

de a hipotón izomzattal is összefügghet, mittudomén, ha nem feszítettem meg a rágóizmot, lelógott az állkapcsom, és sokszor rám szóltak hogy bamba vagyok - de nem természetes ahova beállt hanem nekem kéne szabályozni. ahh nem tudom.