This is so hard

[Starflowerpower87]

My original worker for independent living support is coming back soon. There was just fill ins all summer long. No one told me to take a shower. No one told me to clean. It was great. But my original worker is coming back from her break and she will be cracking the whip. In a way I'm relieved because not much was getting done without her. I was just basically having fun with the other workers. Problem is I have her four days out of the week in the middle of the day for 3 to 4 hours, so it's hard to find time to shower. We used to eat out a lot to fill time which was nice but I can't do that any more because I'm having trouble making ends meet. So many bills. Food is expensive. I'm a little nervous having her back since she's been out so long. To be honest I don't know how I did it before because I was with her so much there wasn't much breathing room. I hope everything works out when she come back. Hope she isn't too hard on me. I feel like she over looks the fact I'm very mentally ill and pushes me to do stuff. She doesn't push me to shower just kind of guilt trips me when I haven't done it in a while. Although it's good motivation, I grow weary of it. But who knows maybe I need a kick in the butt. She doesn't push me to clean but just reminds me about it until it gets done. She does push me to go to outings. Not all the time but to certain events. Hate when she does that. I thought about changing workers and almost did it but then started having extreme panic attacks at the thought of going without her. I don't know why.

 

[Aspychata]

It's sounds like a true like-hate situation . You know she motivates you, and somehow you get stuff done. Just let her know eating out maybe only once a month?

 

[Starflowerpower87]

It's sounds like a true like-hate situation . You know she motivates you, and somehow you get stuff done. Just let her know eating out maybe only once a month?

I think I will be fine financially as long as I don’t spend so much on lunch. Since I have her later in the day, I can get her help to cook supper.

 

[RemyZee]

How much choice do you have about who your workers are? It sounds like to some degree you appreciate that she pushes you a little out of your comfort zone. Maybe just be open and let her know when she pushes too hard?

 

[Matthias]

I'd let her know how you feel. If you really hate something she does, like pushing you to go on certain outings, just let her know and there's a good chance she'll stop doing it. Changing workers without discussing it with her first isn't fair to her and may get you someone worse.

 

[Rocco]

Unless i misinterpreted what you wrote, I do not really know, but it sounds like the worker described is good and helpful. The pushing to do things you are not necessarily comfortable with sounds like it is done from a place of helpfulness and not overly demanding. Pushing beyond our comfort zone from time to time is healthy and fosters personal growth.
Some of my best experiences came from doing things outside of my typical routines.

 

[Starflowerpower87]

Unless i misinterpreted what you wrote, I do not really know, but it sounds like the worker described is good and helpful. The pushing to do things you are not necessarily comfortable with sounds like it is done from a place of helpfulness and not overly demanding. Pushing beyond our comfort zone from time to time is healthy and fosters personal growth.
Some of my best experiences came from doing things outside of my typical routines.

I think it just gets to me because it's like having a second mother that I live with, telling me what I should do. All well. At least it's what gets things done. Most of the time. I must admit I did miss her while she was away for so long. I found without her, reality was getting too intense and I was having spells of anger for some reason. Hopefully you are right and she is good for me. I hope I don't get burnt out from her. I talked to her today through text and she wasn't too hard on me. But she did tell me what I should do. But not much. It wasn't too bad. I also saw her at the mall and we just talked.

 

[Rocco]

@Starflowerpower87
It took me a long time to realize how helpful it is to have a person like your worker in life.

I spent the last 10 months alone and self isolated outside of work most of the time. I live independently with no assistance other than my parents sending gift cards occasionally. Outside of work, I did whatever I wanted and ate whatever I wanted. It felt glorious in a hedonistic way.

I recently acknowledged the fact that my apartment has become a disorganized mess, my life had become a disorganized mess, I was a bit aimless.
I find that I benefit and thrive having someone to remind me of things and keep me on track. I miss having that. It took months of having no one around to realize I needed someone to remind me of things being neglected. I do not have any help like a worker and probably will never will. That makes me vicariously appreciate the idea that you have a worker.
It was a realization that my ego was in the way of my living a better life. That is just my personal experience and perspective and may not apply to you.

 

[Starflowerpower87]

So I had her for three days. We got a lot done. The first two days were nice because we were out doing things. But then come Thursday I was at home because I didn't feel like going out. I wanted her to help me cook lasagna. It was just frozen from a box. She was really bossy telling me I should cook it home made. She told me my hand towels needed to be changed. I hope she doesn't do that a lot because I don't think they were that dirty. On Friday she nagged me because I didn't go to cooking class and said shame on me. I tried to respond by saying I didn't want to eat lasagna again because that's what they were making. She never responded probably because she was busy but I wish she wouldn't do that. I've tried to talk to her before about the fact that I don't like the way she cleans because of mess. I'm afraid of germs and handling raw meat. She said it was very hurtful because she has been cooking for years and knows what she's doing. I ended up having to apologize. It's hard to tell her things when it comes to boundaries because she doesn't listen. One time she even said I was just making an excuse when I found something difficult.

At least we were getting lots done through the week and it's good to have her back on board. Just wish she would listen more and be aware of the fact I get burnt out easy and it's not an excuse.

 

[Starflowerpower87]

She lectured me about some other things but I don't feel like going into detail. Thursday sucked.

 

[vergil96]

That makes me vicariously appreciate the idea that you have a worker.
It was a realization that my ego was in the way of my living a better life. That is just my personal experience and perspective and may not apply to you.

I also would want someone to help with the household and cooking. But I'm afraid of unpleasant situations and I don't know how to pick the right person to help and how to be assertive. It certainly doesn't help that I'm not very communicative a lot of the time.

 

[Starflowerpower87]

I also would want someone to help with the household and cooking. But I'm afraid of unpleasant situations and I don't know how to pick the right person to help and how to be assertive. It certainly doesn't help that I'm not very communicative a lot of the time.

I guess I have the same problem. I don’t know how to be assertive. She is more easy to get on with when we are away from home. At least I have other workers as well. It hasn’t always been bad when she is at home with me because she is good with conversation. But Thursday was a bad day.

 

[Aspychata]

If you do decide to talk to her about Thursday, do it in a neutral place, going out to eat. She as your caretaker has certain priorities she is meeting due to her job description, so she maybe upset if she feels that you aren't helping the way she expects. If you talk about Thursday, just say l wish to talk about this day, these things happen, and then you said that and that, and l was emotionally overwhelmed with everything, and l felt l couldn't really address this at that time. Sometimes others don't know how they come across, until you point it out. Or she just goes into to tirade mode if she feels you aren't living up to that particular facility's expectations required of you. I wish the best for you, and hope you can talk to her to understand her expectations. But lasagna is pretty complex to make, l don't think there is anything wrong about buying pre-made lasagna.

 

[Starflowerpower87]

Well it certainly isn’t working through text. Tried telling her through text twice that she is too hard on me and she just sent a “lmao . “ Then I end up caving and send a heart emoji or something. Had to get my coordinator to get involved to tell her I didn’t want to go to a dance because I’ve been having schizophrenic episodes. Today my worker told me others judge me because I don’t wear a bra and always carry my bag so people think I’m homeless. I really didn’t need to know that. But maybe I should start wearing a bra from now on. Didn’t know people noticed. But still I don’t like it that she told me others are talking behind my back. Don’t know how to discuss all this with her in a neutral place. Don’t think she will even listen to be honest.

 

[Aspychata]

Okay, l think getting the coordinator is an excellent idea. Maybe that is the way to go. Sadly, we sometimes have to try to fit in -in group settings. Because people will gravitate towards talking not nicely about others instead of saying nice things, just human nature. Just take the knowledge and move on. You could get a bag that straps around your waist, just carry your most important personal items?

 

[Starflowerpower87]

Okay I just misread what she said about my boobs and the homelessness thing. She said she put people in their place on my behalf when they said things. So that’s nice. I have no idea why she pushes so hard to go to outings though. Maybe she thinks it’s good for me. But my coordinator knows I find crowds hard. Hopefully she won’t forget to call my worker tomorrow.

 

[Starflowerpower87]

Okay, l think getting the coordinator is an excellent idea. Maybe that is the way to go. Sadly, we sometimes have to try to fit in -in group settings. Because people will gravitate towards talking not nicely about others instead of saying nice things, just human nature. Just take the knowledge and move on. You could get a bag that straps around your waist, just carry your most important personal items?

I'm not sure why people would think I'm homeless just because I carry a handbag. Lots of people always carry handbags or backpacks all the time. Don't know what to do about the bra thing. I have sensory issues and find them uncomfortable. I usually wear slip on ones or just an undershirt. But when I'm not wearing one I guess you can tell because the girls hang low.

 

[Grondhammar]

I'm not sure why people would think I'm homeless just because I carry a handbag. Lots of people always carry handbags or backpacks all the time. Don't know what to do about the bra thing. I have sensory issues and find them uncomfortable. I usually wear slip on ones or just an undershirt. But when I'm not wearing one I guess you can tell because the girls hang low.

My wife calls bras "socially-enforced tourniquets". Often it's good to consider the feedback we get from other people. But it's important to respect your body's needs too. Whether you wear one or not is up to you, but one thing I would definitely avoid is wearing one entirely to be perceived better by other people. That, as Yoda says, is the path to the dark side.

 

[the_tortoise]

Warning this is meant to be supportive but is mostly a rant at judgy bossy people: Pls feel free to skip over the big long rant to the non-ranty part in bold and underlined at the end!

People who may have no malice and purely good intentions, and who genuinely care about you....

But who think just because you are autistic and/or deal with mental illness that your needs and preferences don't matter or should always be second priority to needs and preferences of the majority ... AND ABOUT MATTERS WHERE IN REALITY YOUR CHOICES AND NEEDS HAVE LITERALLY NO ACTUAL IMPACT ON THE MAJORITY, ONLY YOU, AND DO NOT HARM YOU AND ONLY HELP YOU....

Who think that to support a person with developmental disability or mental illness means to push them and control them and decide for them and boss them around....

Thise people and their prevalence in society and especially in caregiving and human services roles are the biggest reason I have rejected six years of constant suggestion I should live in a group home (was suggested long before but never continuously nor by multiple people) ... even though arguably I probably do need daily support...because I DON'T need bossy mean people treating me like I am stupid and lack sound judgement or any capacity to choose things for myself ... I would rather die of some easily-preventable-with-adequate-support thing than have my life be made a true living hell by people who have no respect for me nor any understanding of my feelings and perspectice trying to control me and run my life in ways that they refuse to even consider for a millisecond might be harmful and in reality accomplish nothing but to me make me truly wish I was dead....

(I wish to ask these people always:

What exactly is wrong with wanting sustainable and decent quality of life according to personal definitions, individual abilities and limitations imposed by congenital impairments, and ideals of self-determination?

HOW IS IT BETTER THAT I SPEND ALL MY ENERGY TRYING IN MISERABLE FUTILITY TO GAIN WHAT MAY BE TRULY IMPOSSIBLE LEVEL OF ABILITY IN AREAS OF IMPARIMENT RATHER THAN WORKING REALISTICALLY WITH THE ABILITY I HAVE AND FURTHER DEVELOPING AREAS OF STRENGTH WHERE I MIGHT EXCEL AND ACTUALLY BE ABLE TO GIVE BACK TO THE WORLD, WHILE GETTING ADEQUALTE SUPPORT FOR THE IMPAIRMENTS?

HOW AND WHY IS BEING NORMAL OR AS CLOSE TO NORMAL AS POSSIBLE THE BEST POSSIBLE GOAL?

WHAT LOGIC IS THERE IN THINKING THAT WHAT IS BEST FOR A PERSON IS UNIVERSAL AND THAT WE MUST ALL COMPETE AT EVERYTHING AND IN SO MANY WAYS ATTEMPT TO BE CLONES OF EACH OTHER AND PUSH OURSELVES TO WHAT MAY BE TRULY IMPOSSIBLE LIMITS OF ACHIEVEMENT TO BE HAPPY OR ACCEPTABLE OR WORTHY OF POSITIVE REGARD, INCLUSION, SUPPORT, OR PLATONIC LOVE? HOW DOES THIS MAKE SENSE?)

I fully 100% believe it is WRONG (morally, ethically, and pragmatically) to not consider and show TRUE RESPECT for the wishes and autonomy and self-knowledge of even small children so long as their wishes and allowing autonomy does not UNEQUIVOCALLY cause real and significant harm to self or others (and some negative social judgement from others, if the child or adult understands it and decides they don't care enough to conform to social norms...decides it would hurt more than help to try to fit in and that the hurt is too high a price just to avoid a bit (or even a lot) of negative social judgement -- even if they are truly emotionally hurt by that judgement or even in some case physically bullied as I was at times but accept the hurt and decide it is stupid and wrong and not a good enough reason to hurt themselves even worse by trying to conform and fit in -- that does NOT count as harm to anyone in my view, that counts as society harming the misfit person FOR NO GOOD REASON and the pushy bossy people demonstrating THEIR lack of sound judgement and truly IRRATIONAL thinking);

Imo, people pay way too much attention to things that truly do NOT affect them or ANYONE but the person they judge (and may actually be POSITIVE THINGS for the person they judge, at least minus the judgement -- WHICH IS NOT THEIR FAULT and entirely the responsibility of the judger)....

Far too often people display abysmally poor critical thinking skills and fail to see when whatever judged-as-bad thing is actually harmless or helpful to the ONLY PERSON IT AFFECTS.

I once had a human services professional tell me in truly terrifying drill sergeant commander voice I had never heard him use before and never could have imagined him using (and in flagrant violation of every single promise ever made to me and every expression of respect and understanding and sensitivity, too -- to make this so much more confusing and bad and wrong:_) That i WAS going to some never-before suggested truly wildly inappropriate program JUST BECAUSE HE SAID SO AND UNILATERALLY DECIDED FOR ME IT WAS NEEDED AND GOOD BEFORE EVEN MENTIONING ITS EXISTENCE TO ME, and that I KNEW would have harmed me more than helped in any way at all, and (he said:_) too bad if I didn't want to...

I responded by freaking out and mimicking and unconsciously trying to outdo his drill sergeant voice and manner of speech (because for some reason that is my instinctive default when I feel threatened or mistreated and act without adequate thought or with no thought at all; when am not immediately driven to hide or appease because I truly believe I am about to be assaulted and have no hope of fighting back: I try to be the bigger jerk...it is bad and I don't like it, and it usually does nothing but make bad situations worse and make me behave like a terrible person if I have misread or misunderstood someone....it is something I am trying to train myself out of...nevertheless it is what I did that day:_) and I cannot remember my specific words but what I told him went something like this:

"HOW DARE YOU SPEAK TO ME THAT WAY. HOW COULD YOU DO THIS?! YOU ARE BREAKING EVERY PROMISE YOU EVER MADE TO ME!! OVER MY DEAD (adjective deleted) BODY IS THAT EVER HAPPENING AND YOU CAN JUST GO (verb deleted) YOURSELF BECAUSE I NEVER WANT TO EVEN SPEAK TO YOU AGAIN AND YOU ARE FIRED"

This person to his credit realized he had badly frightened and in fact re-traumatized me and that my extreme reaction was self-protective response to what I clearly perceived as very real danger. He apologized and convinced me to at least talk to him again.

Re: scaring and re-traumatizing me he did not immediately understand how, only that he had (he had never ever experienced me acting like that and I probably surprised him as much as he surprised me)....and I am not sure he ever fully understood. He actually called his drill-sergeant commanding behaviour and manner of speech "encouragement" and I am not sure he ever understood why I called it "commanding" and "telling me I have no choice". (I still call it those things...to me, "encouragement" still acknowledges that the person you are pushing has choice and a possibly-valid or at least understandable concern motivating any reluctance to follow your suggestion; To me "encouragement" ONLY applies to "suggestion", and if you remove the acknowledgement that the other person has choice and that it is them who gets to decide rather than you, it is no longer "suggestion" and therefore no longer "encouragement" but "demand"/"command"/"order")

I have no patience anymore for people in positions of power who are supposed to HELP YOU and SUPPORT YOU, not railroad you and take over your life without a single thought to your perspective and experience.

"THE ROAD TO HELL IS PAVED WITH GOOD INTENTIONS" would be a tattoo probably covering the entirety of my back in both words and vivid symbolic imagery of life events if I had the money for such things and if I was not virtually guaranteed to develop insane scarring and/or have an allergic reaction to the ink....Because truly caring and purely well-intentioned but horrifically ignorant people seeming to be severely lacking in the ability to question things, to search for their own unconscious biases, or to question their worldviews or conceptual models of anything have literally destroyed my life and made me a person who cannot trust anyone, has no realistic hope and will probably never feel safe again.... I despair at how little success I am having at not becoming in some ways exactly like them or just an insanely reactive monster because of the harm such ignorance has done to me and the things I have to fight against internalizing.

Please do not let ANYONE make you stop trusting yourself or convince you that just because your needs and preferences are not normal or not what that person would need/choose that it means your needs and preferences are automatically bad or wrong.

It is good to question yourself, and to listen to and seriously consider other people's ideas and points of view even about yourself and your life, but you are not obligated to agree;

And I recommend paying careful attention to whether people who constantly challenge and question you (ESPECIALLY if they also constantly upset you or make you feel bad about yourself or try to control seemingly everything about how you live) question themselves at all... If they don't, and also do not listen to you about yourself, and do not seem to care about or even want to hear your reasons for your choices and preferences, or for your disagreement with them, they may not be safe people and their ideas may not actually be in your best interests.

(Final edit: Sincere apologies to anyone I offended with now-deleted adjective and verb; Will completely omit such inappropriate words from all future posts; Or, instead of starring out most letters when I wish to be 100% accurate and honest about inappropriate language used will just write something like "[bad, inappropriate word]". I am sorry.)

 

[Aspychata]

I feel that my entire life is telling others that l don't have to live my life to their expectations or standards, and many others have this issue. I also believe people overstep boundaries to see if they are able to manipulate you. So standing up for one's self actually becomes a way of life for many of us on the spectrum.