Chasing Perfection? #SoCS

Posted on by Astrid

Whenever I think of how bad I feel about my current care home situation, I am reminded of two seemingly contradictory statements from my staff. One is that I think every place is horrible anyway. The other is that I had “gold in my hands” at my old home. These seem contradictory, but really aren’t. They are two sides of the same coin: I am thought of as chasing perfection.

There may be some truth to this idea indeed, but that doesn’t negate the fact that one can learn and this place is definitely bad. It isn’t like I just need to accept what I have now just because I can’t have it all. Besides, if people – the powers-that-be, such as the behavior specialists – just had been honest with me about the fact that, indeed, to live with people of higher IQ would mean more expectations and less support, I’d have declined to move. That was, after all, the comment I put at the bottom of my “housing profile”.

And it isn’t like I chase perfection everywhere. Or honestly that I thought, at the end of the day, that this place would be perfect. Yes, when I read the home’s profile on the website, I thought it’d be, but that leaflet is either outdated or simply incorrect. But when the behavior specialist for my old home explained some things about the home, I did realize it wasn’t perfect. Same when I visited here twice. But then again, perfection doesn’t exist. And I was willing to make some sacrifices to live on institution grounds and have fellow residents I could chat with. But not everything I had: all the daily structure, all the useful day activities, all the proper help with ADLs and, interestingly, behavioral regulation too. Because, despite the fact that this home is an intensive support home, which means the residents have significant challenging behavior, whereas my old home was a care-based home, I see more people managing huge wildfires of escalating behavior without realizing the proverbial cigarettes they’ve thrown onto the ground themself.

This post was inspired by today’s prompt for Stream of Consciousness Saturday: “perfection”. I am sorry for being repetitive yet again. This whole care home situation is getting old, but I wish that meant I’d actually adjusted to it. I’m not sure I ever will.

Meh #SoCS

Posted on by Astrid

Hi all. Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “me”. We’re supposed to either use the word as it is or find a word that starts with “me”. The first word that came to mind somehow was “meh”. And how fitting! I am sick to my stomach again. I will spare you the details but it’s not pleasant. And I’m supposed to write lots of things, as it’s the start of #31Days2022 and Blogtober and all. Oh well.

Last Tuesday when I was sick too, it lasted only a couple of hours, so I am hoping it will go away by the evening. That way, I could write a proper post once my one-on-one leaves at 8PM. That’s of course not the main reason I want my sickly feeling to go away. I mean, if I remain sick until Wednesday, will I be able to move that day?

Of course, I’m hoping I won’t give my sickness to anyone else either. I’m not running a temperature, thankfully. My husband thinks it’s food poisoning. My staff think it’s stress. I hope in any case it will leave my body soon (and not in the way it’s leaving my body now, honestly). Oh wait, that’s a bit TMI. Oh, see, writing it down either helps or it’s indeed getting better. Let’s hope.

My New Home? #SoCS

Posted on by Astrid

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Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “home”. How timely! As those who’ve read my blog over the past week or so will know, I may move to another care home in a week and a half. The choice is up to me.

It is indeed the first home that wants me, like when I applied for long-term care and landed here. Well, no, in that sense it isn’t the first. My current care home isn’t kicking me out, after all. If I don’t want to move to the prospective new home, if I don’t think it’ll feel like home to me eventually, I don’t need to.

It feels liberating to be able to make this choice. I have been able to ask quite critical questions, some of which were answered already and some of which I’m waiting on being answered soon. For one thing, I want to know about the staff/client ratio. This is important should my one-on-one ever be reduced, but also for those times when I don’t have one-on-one support. The support coordinator told me there are three staff each shift, but I’m not sure that’s just for my group of eight or for the entire home, consisting of two of these groups. I so far only saw my group’s home and that’s quite large already, so if the three staff are for the two groups of eight, that’s going to be quite difficult for me.

Other questions have been of lesser importance, such as whether they serve decaf coffee or the regular kind, whether we need to pay for treats such as chips on weekends, etc. I feel quite satisfied with most answers and am pretty positive I’m going to make the move. With my visit on Monday in addition to last Wednesday’s, I should be able to make an informed decision about whether this will be my new home.

Unicorns, Of Course! #SoCS

Posted on by Astrid

Unicorns are my favorite mythical creatures. When I saw that this week’s prompt for Stream of Consciousness Saturday is “U” – to start your post with a word beginning with the letter “U” -, I of course had to go with “unicorn”.

Not that I know much about the origins or meanings of unicorns. I mean, I love reading chapter books about them, in which they are always described as having magical powers. For example, in the Branches Books early chapter book Bo’s Magical New Friend, a unicorn tries to help discover her friend’s power. In a chapter book for slightly more advanced readers, Twilight, Say Cheese! by Daisy Sunshine, a unicorn has trouble containing her power of invisibility.

In addition to books, I love stuffed unicorns. I have two. One is Sophie/Rainbow, who has two names because two of my blog readers independently came up with names for her. She is a white unicorn with rainbow-colored mane. The other is completely white and I call her Snowflake.

I also love crafting unicorns out of polymer clay, though I haven’t done it much lately because I haven’t found a way to prevent the thing it stands on from bending and/or developing air bubbles. I do really want to create another unicorn soon, but am too busy with the presents for various people to get to that one. I already have the colors I want to use for my next polymer clay unicorn though. It will be three different intensity levels of a bright green.

The Future Is Not Clear #SoCS

Posted on by Astrid

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Exactly a month ago, I made the decision to start the process of looking for another care facility to live in long-term. I felt, at the time, that it’d take at least two years before I would’ve found a place and I was fine with that. Now, though I am still fine with the fact that it might take years before I’ve found the near-perfect place, my forever home as it were (oh boy, that sounds like the afterlife to me, haha), the path inbetween not being clear, doesn’t sit right with me.

I like to have control. I don’t like to have made my wishes clear and then not hear from the care consultant for months until he’s heard from an agency or something and they want to meet me. I don’t like the fact that a lot might’ve been discussed by those agencies with my behavior specialist or the care consultant or whatever without me knowing anything about it. That feels too vague. Besides, it feels as though I have no influence over it. Which may or may not be true.

In this sense, the fact that I’m intelligent, works both for and against me. My fellow residents, who have severe to profound intellectual disability, don’t even know anything about such big decisions. Yesterday, the least intellectually disabled of them moved rooms and he seemed to have had little say in the matter. That sounds very scary to me. I want to have a say. Yet if I can’t, and things are made clear at my level of understanding, as they were with him, then maybe it’d be easier.

Now, I do intellectually understand a concept like two years or more, but emotionally, it’s very hard to grasp. I wish the future were more tangible in this sense.

This post was written for Stream of Consciousness Saturday (#SoCS), for which the prompt today is “clear”.

Unconsciously Incompetent #SoCS

Posted on by Astrid

When I was in college studying applied psychology (it was really an orientation year to Bachelor’s of social work or related fields), my tutor had an interesting theory about how we learn by first being unconsciously incompetent. Then we move on to being consciously incompetent, by which she meant we are aware of our lack of knowledge and skill. Then, after years of college, we move on to being consciously competent. Once being experienced in the workforce, we then become unconsciously competent, which means we no longer need to be aware of our competence, since it’s become muscle memory.

I reached the stage of conscious incompetence when my tutor told me flat out that she was passing me for communication skills only if I promised never to enter the field of social work, psychology or any related field of study or work again. Thankfully, I was aware that my communication skills exam had really gone badly just before she told me, so I didn’t just need to be dragged into conscious incompetence.

I think I might need a similar experience with macrame. I started practising on Thursday and, though I managed the square knot, spiral knot and lark’s head knot quite easily eventually, I am pretty sure I’m still unconsciously incompetent. In other words, my work is horribly ugly but I think it will do.

The only thing is, because I sort of know I might never reach the stage of even conscious competence, I am too scared to show my work online for judgment. After all, as much as I am self-conscious about it, I also would really like this to work out!

Similarly, though I knew before that horribly messed-up communication skills exam at least on some subconscious level that I’m not suited to become a social worker or psychologist, I wanted to be one. That’s probably why I went into linguistics, which, though it isn’t necessarily within the helping profession, is still a communicative field of study. I only went into it to have a student psychologist tell a newspaper that “a blind autistic who wants to study something communicative” is going to have a pretty hard time of it, when they were promoting their autism buddy program. That pretty much sent me into conscious incompetence as soon as I read it, which thankfully was six weeks into the academic year. I guess that’s what happened the time the first person to comment on my question about macrame told me it would be really hard too. Only that’s before I’d started. I’m not sure that’s conscious incompetence though. It looks rather like low self-esteem.

This post was written for Stream of Consciousness Saturday, with the prompt of a word containing “Comp”.

Allowed to Rest #SoCS

Posted on by Astrid

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Like I’ve said multiple times over the past week, I’m self-isolating with COVID right now. Today is day four of my five-day mandatory quarantine. I have taken each day as an opportunity to stay in pajamas, because I didn’t feel like getting dressed now that I wasn’t allowed to leave my room anyway. That being said, taking my much-needed rest, has been more of a struggle.

Both on Wednesday and this morning, I was up in the middle of the night really, or early morning, depending on your perspective. On Wednesday, I was up by 3AM and couldn’t sleep. Today, I could stay in bed till 4AM. The other nights, I managed to sleep for at least ten hours, sometimes twelve.

It isn’t that I’m not tired, really. Or maybe I’m not, but it does feel kind of like I am. However, my brain won’t shut off. It’s like my body is exhausted and in need of rest, but my mind continues to tell it to carry on. It isn’t even my brain. Well, you know, my mind is in my brain too, but I mean, it isn’t that I’m not cognitively tired too. But I keep beating myself up over it.

Then again, if I can allow myself not to get dressed, why can’t I allow myself to lie in bed and sleep this whole thing off? I can’t force myself to sleep, of course, but I can try to get some rest. Instead, I’m writing this mindless blog post. Thanks for reading! I’m allowed to rest now. Or read what the rest of you have to say.

This post was written for Stream of Consciousness Saturday, For which the prompt today is “Rest”. I just realized that, in my second-last sentence, “you” is a better fit than “I”, but editing is against the rules. Oh well.

My Hands #SoCS

Posted on by Astrid

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “body parts”. I could of course write about how I’m scared for my abdominal X-ray this coming Tuesday and share all the details about my tummy ailments, but I’m not going to. After all, Lindda has asked us to warn our fellow SoCS participants if a post is NSFW and I generally don’t write that type of posts on my blog anyway. So, I’m going with another body part: my hands.

After all, what’s been worrying me most is that my abdominal complaints will be something serious, like cancer or the like. And if they’re cancer, that I’ll die. Or need to go on chemo. And if I’d need to go on chemo, I’d lose my nails. Not that I mind my nails that much in the sense that I like to polish them or whatever. I bite them like crazy, in fact. But I’d like to keep the function of my fingers please. So, with those scary thoughts out of the way (I hope writing them down doesn’t make them come true), I’m going to write about why I appreciate my hands.

Some staff say I have piano fingers. I can’t play the piano to save my life, but what they mean is that my fingers are relatively long and thin. I like that. They allow me to type on my laptop keyboard with relative ease. I used to make a lot of typeos. Not anymore. I don’t know why.

My fingers also allow me to read Braille. I don’t read traditional Braille books or paper anymore, but I do read a lot on my Braille display. If I lost my nails, I’m pretty sure I’d no longer be able to read braille, because, well, even if I could still feel the Braille dots with my fingertips (assuming they wouldn’t need to be covered in band aids or something), I guess my Braille display wouldn’t like all the stuff coming from my exposed nailbeds. Oh, is that NSFW?

Besides my fingers, my hands allow me to touch all kinds of textures. I love my large collection of stuffed animals, all with their different feels to their fur. I also love my two fleece blankets, one I got in my Christmas package from my old day center and one the day activities group with the sensory room bought for me so I had my own blanket to cover myself when going into it.

One exercise I used to do when trying to stay present when I’d often dissociate (not that I don’t dissociate anymore, but I find it harder to do the exercise), is to touch various objects in my surroundings and describe them as objectively as I can. Then, after I’ve named some characteristics of the object, I name the object itself.

My hands allow me to hold onto my white cane and onto someone’s arm when walking. I might find a way to walk sighted guide if I lost my hand function, but I still appreciate my hands for what they do for me now.

What do you like about your hands?

The Puzzle and Its Pieces #SoCS

Posted on by Astrid

When I was first diagnosed with dissociative identity disorder (formerly known as multiple personality disorder) in 2010, I was already aware of some of my alters. I at the time explained to my therapist that the body or “Astrid” was the puzzle and the alters were the pieces. In other words, there was no host who “owned” the other alters as such. I felt that we needed to cooperate as one collective, not as one piece.

I was, at the time, unaware of the other significant meaning of the puzzle piece in my mental health experience, that is, its symbolism in autism-related lobbying. I mean, Autism Speaks and other cure-focused organizations employed the puzzle piece as a symbol of something being “broken” or “missing” about us autistics. That’s why autistic activists are so vehemently against it.

I personally till this day don’t mind the puzzle piece as much. I mean, I don’t like it that Autism Speaks uses it, but other than that, I’m not sure what I think of the symbol. I’ve heard the alternative is something like a rainbow-colored infinity symbol or something, which I have absolutely no concept of, never having seen the infinity symbol when I still had enough vision to picture it.

I do think the puzzle is a great symbol for plurality in general and dissociative identity disorder in particular. Another one is the kaleidoscope, but I don’t like that one as it is the name of the Dutch DID charity. That one is very exclusionary and kicked me out on the basis of not having a diagnosis given to me by someone they approved of.

So, the puzzle. The pieces, when cooperating perfectly, make up the proper image of what should be “Astrid”. Then again, that’s an ideal. Hard to achieve. I don’t think we ever will. And that, in my opinion, is okay.

This post was written for Stream of Consciousness Saturday (#SoCS), for which the prompt today is “Puzzle”.

How Far I’ve Come #SoCS

Posted on by Astrid

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Today’s prompt for Stream of Consciousness Saturday is “Where”. Linda, the host, is probably referring to the 9/11 terrorist attacks and where we all were at the time when she says that she has a feeling the subject of many posts will be the same. I, though, think I already shared where I was during the 9/11 attacks. I was in my room, writing in my diary about being used for a reality TV show. I mean, in the taxi home from school, I was secretly filmed while talking to the taxi driver and then was asked to consent later to it being shown on TV. I obviously refused. I was only fifteen. My mother said they should’ve picked someone at least five years older than me.

I don’t want to revisit that day though. Instead, I want to reflect on where I came from and how far I’ve come in those twenty years since the attacks.

On 9/11, I was in the ninth grade at grammar school or a classics-oriented high level high school in my city. I was being mainstreamed despite being multiply-disabled, because my parents believed I was just blind and oh so intelligent (which they considered a disability too in some ways, but it really isn’t).

Two months after the attacks, on November 2, 2001, I experienced a major mental crisis, which was of course brushed off by my parents. Six years later exactly, I did land in the hospital when experiencing another crisis.

I spent 9 1/2 years in the psychiatric system, 2 1/2 years living with my husband because the psychologist at my last psych unit felt I was misusing care and should be living independently. Then I went into long-term care. It’ll have been two years on the 23rd.

In a sense, I’ve only deteriorated in those twenty years. On 9/11, I proudly told that taxi driver how I was doing being mainstreamed as a blind person in a high level high school. Twenty years on, I live in a facility with people with severe to profound intellectual disabilities. Even then, I’m the one who needs the most care, getting one-on-one most of the time.

In another sense though, I’ve come a long way. I’ve definitely become more like me, the real me, who doesn’t care what her parents or teachers or support staff for that matter think she’s supposed to be like.