Care Needs

Posted on by Astrid

Last year, when I was first feeling like I was falling apart at my current care home, I wrote a list of my “needs” and E-mailed it to my assigned staff and support coordinator. I heavily watered down my wishes, thinking a need isn’t the same as a want and whatever comes out of a discussion of my needs, should be working for everybody involved, not just me. For example, I asked for more clarity on what activities I’d be doing each day and offered to use my whiteboard, but also said staff could just ask me what I thought I’d be doing and help me find a suitable activity; this last one was then put into my day schedule, ie. “Staff upon leaving asks Astrid what she’s going to do next”. Needless to say, this didn’t work for me, being autistic, at all, as it leaves the same amount of unstructured chaos as the old wording, which was simply that I had “alone time”, did.

Now, more than a year later and with the Center for Consultation and Expertise involved to help me and my staff improve my quality of life, I’ve written another list, but this time, it doesn’t offer solutions for my unmet needs; rather, it’s simply a list of problems I encounter at this home. In a way, I feel that being solution-focused should be more constructive, but then again this time I have the consultant to think up possible solutions to come closer to meeting my needs.

This post was written for the Six Sentence Story linky, for which the prompt this week is “need”.

Consciously Incompetent This Time

Posted on by Astrid

Over the past few weeks, I’ve been attempting several times to create a polymer clay trinket dish, with no luck. The first time, when I’d finally rolled the slab to the right thickness, it was too small for my trinket dish cutter; the second time, I couldn’t even get the clay to the right thickness without it being horribly uneven; and yesterday, when I actually got the slab to the right thickness and size for the cutter, it turned out that the bowl I used for molding my trinket dish into, was too big.

Several years ago, I’d have been content with my second slab and might’ve used it as a coaster if I hadn’t molded it regardless of the size of the bowl.

I am often reminded of the fact that, according to one of my college instructors, people start at unconsciously incompetent at a new skill, ie. overestimating their abilities, then move on to the stage of conscious incompetence, at which point I believe I’m now with some of my polymer clay, like with the trinket dish. It’s an incredibly frustrating stage to be at, because I constantly give up on projects that I want to pursue because of realizing they’re going to be a massive fail.

At least though, I try to remind myself that I’m not as clueless as I was with card making many years ago, because then I’d happily send out cards a five-year-old could’ve made in exchange for cards by semi-professional card makers.

This post was written for the Six Sentence Story blog hop, for which the prompt this week is “card”.

Clawing My Way Out

Posted on by Astrid

There have been many times when I had to creep out of a very dark, deep pit of despair. I try not to wallow in depression, but, as an Enneagram type Four (and I in no way mean to blame that for all my shortcomings), I struggle to disengage from my feelings and actually live. That is, unless I so completely disconnect from my feelings that I’m in fact pretending they’re nonexistent, something that in turn can lead to my feelings eventually overpowering me and my falling back into the pit. When this happens, I can choose to either stay there or claw my way out and so far, I’ve thankfully always chosen the latter!

I’m thankful that, even though it’s fall and this is usually a season for misery and melancholy for me, I haven’t found myself in the dark valley yet. Let’s hope I can skip it this year!

This post was written for this week’s edition of Six Sentence Stories. The prompt word is “claw”.

Before and After

Posted on by Astrid

I rarely if ever turn the pages of an actual book these days, since I can’t read print and Braille books are just too clunky to have around. Turning pages, for this reason, is mostly just a figure of speech: I can turn the page on a memory, turn pages in the book that is my life, etc.

Sixteen years ago today, I experienced a turning point in my life, as on that day, my fragile mental state completely collapsed. The night after, at roughly 2AM on November 3, 2007, I was admitted to the psychiatric hospital.

Since then, my life consists of a “before”, in which I appeared to more or less function in life according to non-disabled standards (but was really merely surviving), and an “after”, in which I appear to have given in to the disabled side of me (but am slowly learning to live). I struggle to unite the two.

This post was written for this week’s Six Sentence Story Link-Up, for which the prompt word is “turn”.

It’s All a Blur

Posted on by Astrid

It’s all a blur, this life of mine. Moments, days, weeks, months – maybe soon years, who knows? – roll into each other. I don’t like it one bit, sorry not sorry.

I may not be able to fully lay the blame on my current care home with its chaotic and yet oh so boring routine and no day activities whatsoever. I might be able to create my own routine that would somehow differentiate between mornings and evenings, weekdays and weekends, summer and winter. If only I knew how.

This post was written for this week’s Six Sentence Stories link-up, for which the prompt word is “blur”.

Lord, Please Lead Me: A Prayer Poem

Posted on by Astrid

Lord, please lead me on this journey,
guiding me every step of the way;
so that I may not wander,
and I may not run astray.

God, I will follow You wherever
in this life I’m supposed to go,
but please take me by the hand
and show me what I need to know.

I pray I will find comfort (at last)
in Your loving arms.
Please show me I am right to trust You;
Show me You are the God of warmth.

God, I feel so lost and lonely,
like no human soul sees what I truly need.
In Jesus’ name, I ask you,
will you help me when I take Your lead?

This poem was written for this week’s Six Sentence Stories link-up. I have no idea whether any other Six’ers are believers, so I was initially going to post this at the top with a note that my poem is Christian in nature, but then I decided the title should speak for itself.

My Ideal Space

Posted on by Astrid

I have been thinking about my ideal living space lately; a space I can feel safe, secure and at home in. When I wrote my post describing my safe space a few weeks ago, I realized that, other than the unicorns, I could almost recreate my safe space right here in my current care facility. In fact, I have nothing to complain about my room, with my private bathroom, kitchenette and even my own balcony.

So why do I feel I want to move to a different care facility, and why, in fact, do I feel like I actually want to sacrifice some of the aspects that make my current room great, in order to live in a more suitable care home, and what does “more suitable” even mean? I’ve said many times that I want to move to institution grounds, because then I’d be able to feel like I’d be more sheltered when going outdoors. Thankfully, most of my current readers didn’t know me fifteen years ago, or they’d call me crazy now for such a 180-degree turn from saying institutionalization is bad and community care is always preferrable to now wishing to be institutionalized myself.

This post was written for this week’s Six-Sentence Story link-up, for which the prompt word is “space”.

Bat-Tea

Posted on by Astrid

In the psychiatric hospital, coffee was consumed more than any other drink, except for maybe alcohol by the dually-diagnosed. (No, that’s not true: even though I’ve seen my fair share of drunken patients, they probably still didn’t manage to drink on a daily basis.) We had set coffee times, but everyone knew the way to the coffee machine in the outpatient clinic’s waiting room; actually, a nurse showed me.

Even so, when we were unstable, we drank tea, specifically rooibos with strawberry and whipped cream flavor. I don’t understand how any of us liked it, but we did. I nicknamed it bat-tea, for it helped us when we were going batty.

This post was written for this week’s Six-Sentence Story link-up, for which the prompt word is “coffee”.

Because I’d Had a Stroke…

Posted on by Astrid

I couldn’t possibly be autistic, my psychologist said, because I’d had a stroke as an infant and that somehow precluded a diagnosis of autism. Never mind that autism is genetic and said stroke supposedly didn’t change my genetic makeup to make me neurotypical. I, however, had to be diagnosed with acquired brain injury-related behavior change instead, but then again I couldn’t either, because I was too young when I sustained the stroke for my behavior to be considered as having changed either; after all, a six-week-old infant hardly shows any behaviors that would be considered significant in an adult. For this reason, I ended up with just some regular personality disorders, specifically dependent and borderline PD. Never mind that these have their onset in early adulthood and I’d shown symptoms since childhood. As it later turned out, my psychologist’s reason for changing my diagnosis had nothing to do with logic and everything with her wish to kick me out of care.

This post was written for the Six Sentence Story link-up, for which the prompt word is “stroke”. It isn’t completely factual, in the sense that, though my psychologist kept referring to what happened to me at six weeks of age as a stroke, it was actually a brain bleed. That doesn’t change the rest of the story though.

The Staff Have the Key

Posted on by Astrid

I have a morbid sense of humor that has sustained me through the darkest times of my life. I remember when I was in a suicidal crisis in 2007, being held at the police station while waiting for the crisis service to assess me, telling the officers how I wasn’t all that creative, since I had thought out only a few ways to die. I think one of the officers tried to distract me by saying that I must be creative, since I have a blog, but I wouldn’t listen.

Once I had been admitted to the psychiatric hospital, locked ward, with no privileges (as they are called) to leave the ward unsupervised by staff, I started to crack jokes. They were rather lame jokes if you ask me, jokes I’d plucked off the Internet, such as those about the differences between the patients and staff on a psychiatric ward. First, the patients get better and leave; second, not all patients believe they’re God; lastly, the staff have the key.

This post was written in response to this week’s Six Sentence Story Link-Up, for which the prompt word is “key”.