I’d say the meeting went pretty well.

I’ve got things I’m going to have to do now, and I’m unsure. Some kind of sensory desensitisation? I dunno, I think it has to do with vocational rehab, which I did back in 2007-ish and I was treated like I was mentally um…deficient? Seriously the woman who was assigned to me assumed I couldn’t read at an eighth grade level and also wanted to use PUPPETS to communicate with me. I shut that down pretty quick and was, by my own admission, very difficult. My peer support at the time had my back and did call her out for assuming and treating me like I was “special”. I don’t know if this lady automatically equated autism with being mentally uh…I don’t know if someone will have a fit if I say “retarded” 😅 It was perfectly acceptable and widely used 20 years ago. Cry about it, I guess. But yes, I think she equated the two things. That’s not to say that some autistic people aren’t also mentally retarded or sometimes “profoundly retarded” as I heard from a medical professional, but I think most autistic people are just…autistic. With comorbidities. I don’t think she even knew any of that stuff though, she just had an idea in her head and went with it. Oh, and my “employment” lasted one day and I was intimidated by a group of men! I never went back. If you’re going to commit to hiring someone with a developmental disability, maybe don’t act like they’re garbage simply because they aren’t blood related to you. Yes, that was why. It was a family run business. Hope they felt like big men acting threatening to a 5’2” female who was only trying to get in her car and leave. Why would someone even try to do that if the men in the family are intimidating assholes. Ugh, went on a rant. That experience still makes me afraid to even consider trying something like that again. I think vocational rehab has changed a lot since then, and they also do a lot of different things now. I don’t really understand and am really hesitant.

I froze up when they wanted to talk about my many diagnoses. I explained how I grew up. Basically, if there was something wrong going on with me (which there was…a lot) my relatives would say “there ain’t nothing wrong with you.” In a very dismissive way and brush it aside. When I found out I had arthritis in my back, I was walking up the stairs in my house and my uncle repeated the same stupid mantra, “there ain’t nothing wrong with you.” I tried to bite my tongue but snapped something like “I’m 30 and have the back of a 60 year old.” Glared at him, and went to my room. I was diagnosed with depression and medicated at age 9, because I was having suicidal thoughts. Also OCD and panic disorder.  Same fucking response from everyone. I mean….fuck y’all. I know all of you have problems that you repress and refuse to seek help for, but that ain’t me. I will gladly take the help. You can shit on me as much as you want, but it doesn’t matter in the grand scheme of things. It did make me hesitant to speak about my problems though, like today, but they told me I was supposed to talk to them about this stuff and that’s why they’re there in the first place. I did my best to explain how bad the sensory crap is, and how it affects my every day life, and why there are things I simply can’t do because of it. Stuff that makes me puke. Literally gag and puke. Textures, smells, sights etc. There was other stuff of course, but the sensory stuff is the issue that people seem to think isn’t a big deal and dismiss it as “you’re just too sensitive” or lazy or whatever. I have trouble believing that even people in the field of mental health will understand. I did have one woman that just couldn’t get it, and I refused to see a therapist for several years because she judged me and wasn’t understanding what I was telling her. She’s the one who did my updated mental health assessment last year and inserted a really dumb lie in the report, which made me sound like a petty spoiled brat. Bald faced lie 😣 I can’t get her to change it though, so that dumb shit is in my paperwork FOREVER. /sigh. Uhhh…did I go off on a rant again? I can’t keep my shit together when writing, it seems.

Anyways, they said that ACA does not step up and care for clients in the situation of a parent or carer passing away. Karen said that she would step up herself, and I felt a lot better hearing that. Last night, I was so worried about mom that I had to force myself not to call her at freaking 2am! Sometimes I panic about her not waking up in the morning, and I force myself to let her sleep instead of making sure she’s okay. It’s miserable when that happens because I get all frantic and have to write her an email just explaining how I’m feeling. If I didn’t, I’d go nuts and implode. 😕 I don’t want to make her think of her own demise but she had mentioned having this kind of talk with ACA before and was totally up for it.

I really did my best to open up to them, things I would NOT tell anyone, shit I’ll take to the grave if possible 😬 It was hard. It was hard talking about how eventually, my mom will not be here anymore. I usually refuse to discuss it because it’s just so distressing! And I’ll probably cry at some point. I said lots of things I’ve never opened up about before to anyone, besides mom.

I feel I did resolve a few things. Definitely not as much as I wanted, but I know I won’t be alone at least. I’m not trying to leave my dad out, but as I said before, the man is not that self aware. We get along great (mostly) but he’s not going to help me with things I don’t understand like mom does. Maybe some things, but not a lot. I don’t depend on extended family. They’re the ones who blew me and my problems off all my life. I don’t trust them to have any kind of understanding.

Anyhow. That was a cluster fuck of paragraphs. I can’t write for shit lol. At least not something that isn’t a dumpster fire of rants and tangents 😆

Coming up the stairs to my apartment just now smelled like the laundry detergent isle at Ingles. Not complaining at all because it was actually pleasant, but I found it odd. Usually smells like manure out there 😅

Tomorrow is the meeting at A Caring Alternative (where I get my mh services) to talk about what happens to me after mom is gone. *shudders* I don’t want to think about it because her not being here anymore is probably my worst fear. However, she just turned 75 in July and….I guess it finally has to be discussed. Women on her side of the family tend to live to at least their early 90s, if something like cancer doesn’t get them first. My Nanny and her sister lived to 99 and 100 respectively. Great grandma was like 92 when she passed. Since mom smokes, I worry about cancer related to that. She already had uterine cancer in 2003, you’d think once is freaking enough. I watched a dear friend die from lung cancer years ago. I would rather not do that again, especially with one of my parents. You never know how long you have left with your loved ones.

My worry is that my case worker from Partners won’t be there (can’t remember if she’s supposed to be there, gah) and in my mind she’s the most important person to talk to about it. I’m also of the mindset that nothing will actually get done or any agreements will be made. I have been bitch slapped with reality way too many times to think anything gets done in a relatively short meeting, so I’m kind of not looking so forwards to it because I’m afraid I’ll get frustrated with the whole thing and get all wound up and stressed out. 😰 I also don’t think I’ll have any useful ideas or input. So like…why should I go? I’m going, but I don’t know how useful it will be. It’s at 2pm. Karen says she’ll take me out afterwards. I really think a useful meeting on this subject would take a whole day or more, and if we’re able to go out afterwards it’s not gonna be a very long meeting. Soooooo….

When mom is gone, I’ll probably still have dad because he’s 11 years younger. Problem is, I absolutely CANNOT count on him to do the stuff mom knows how to do, stuff that must be done if I want to keep my living space, mh services, medical stuff and all kinds of other shit. I’d lose it all because I 100% do NOT have the cognitive ability to collect the ridiculous amounts of information I would have to. I wouldn’t know what to get, where to get it, how to get it, or even what it IS! People think I’m smart for some reason I’ll never understand, but I have no practical common sense. A lot of things simply mystify me. To use layman’s terms, I am “slow”. That word was used at my first Autism diagnosis in early 2006. They don’t use that word anymore, they’ve replaced it with “delayed processing of information” or whatever. I know what I am, though. And it’s okay. I’m not ashamed. I just know it limits me and what my limits are, for the most part. The word “Can’t” is absolutely in my vocabulary.

Partners has tried to dump me before and I’m terrified of that. They seem to think I’m in need of short term help, which is not the case. I don’t want to go into assisted living. I want to live independently, but I’m gonna need help that only a place like ACA could give me.

I hope SOMETHING gets done tomorrow. I’m not holding my breath though.