Fidgeting

A few months ago, one of the staff at my day activities showed me a fidget spinner. I’d never seen one before, although I’d heard of it, of course. It was a little disappointing, to be honest. I mean, yes, you can fidget with it, but it doesn’t have as many features as some of the other toys at day activities. I didn’t really understand the hype.

Last week, the things my assigned staff had ordered for me to play with, came in the mail. There was a deck of cards to play games with, a set of dominoes, but also a fidget toy. This one had a lot more buttons and things.

I often love to fidget, but not necessarily with standard fidget toys. I have a set of makeup brushes at day activities that I like to stroke.

Then again, my main stim (the autistic term for fidgeting activity) is hair twirling. I remember my second autism diagnostician telling me I really needed to unlearn it, as it was a “serious social handicap”. I was at the time in my first month of my psychiatric hospitalization for suicidal ideation, so even if it were a serious social handicap, I had other things to worry about. Turns out my parents and said diagnostician are the only people truly offended by this behavior.

Speaking of which, everyone stims. I have mentioned this a few times before but I remember one day sitting in on a demonstration some social services students were giving of their work. The student pretending to be the social services person was constantly clicking his pen when talking to the client-student. I thought this was odd, but no-one else noticed.

Still, I may want to get myself a stim toy to replace the hair twirling with. I saw some on Stimtastic.com that I may love, but the shipping cost from the United States to here holds me back from ordering anything.

Linking up with today’s Daily Inkling.

Jade

We don’t have an alter named Jade. We do have one named Jane, one named Janita and one named Jace (short for Jaclyn). But we have no Jade. Then again, we love jade.

Jade is a beautiful green gemstone. At least, that’s the color we know. There are also creamy white and blue jades. We had at least one, a green jade, in our gemstone collection, I believe.

It is supposed to be a protective stone, in terms of crystal healing. I’m not sure I believe in crystal healing, but to some extent, I guess I do. Jade is supposed to promote self-sufficiency. In that sense, I guess our alter named Jane would love it as her stone.

When I look at the supposed benefits of jade, I see it also promotes balance, harmony and moderation. To me, this signifies that it could be an especially useful stone for us.

It isn’t specifically suited to our Zodiac sign. That is, it is suited to Libra, which we are supposed to be if you take our due date as our birth date. Which I have no idea whether any astrologers even do. I guess not. Our regular Zodiac sign is Cancer.

Jade is connected to the heart chakra. The heart chakra’s color is green. At least, when I did a guided color meditation using the chakras, I was told to envision the heart chakra as green. I wonder whether there’s any connection between the main colors of gemstones and what chakras they’re most related to.

Synesthetically, the word “jade” is also green. Three out of the four letters are green and the overarching color of the word is an emerald green. I truly think it’s amazing!

Linking up with #JusJoJan, for which the prompt today is “jade”. I’m not sure I’m allowed to link up, since I didn’t previously participate this year, but oh well.

What a Year! #SoCS

SoCS Badge 2019-2020

What a year it’s been! It had a lot of ups and some really deep downs too. I will post a year in review sometime in the next few days, as I can’t do them in stream of consciousness form. However, today I already want to say that this year was huge. Really, I’m still struggling to grasp that my twelve-year-old wish to find a suitable care facility finally came true.

I’m not sure what else I can say about this year. I mean, the whole year has been filled with first applying for long-term care funding. Then it was denied and I had to keep quiet on my blog and social media about it, in case someone from the funding agency would find out and use my writing against me. I still wonder whether the funding people might’ve read that one blog post I wrote on June 3. It was essentially a suicide letter in disguise. I mean, yes, it was positively worded, as a letter from myself in 2021, when everything would be okay and I would be in supported housing. However, it was clear to anyone reading between the lines that I was in a very dark place. The next day, my appeal was granted and funding approved.

Then I had to wait for another two months to find out I was accepted into the place I wanted to go into. It was the second care facility we’d been checking out. The other one was closer to my old home (and is also closer to our current home), but the vacant bed had been filled up by the time my funding was approved. I had my doubts about that place already, as I heard at my day center that staffing was cut at the day center people from there went to. It would’ve been nice if I could live in that facility, at least in that it’s closer to our home, but it works out now too.

I had lost hope again by the day the care consultant for my current care facility called my support coordinator to inform her that I’d been accepted. No depressing blog posts this time though. This was August 20. On September 23, I moved in. Wow, that’s already been three months!

I feel calm now. Calmer than I’ve felt in a long time. Not just today, but in general. Of course, I still get frustrated when my computer doesn’t do what I want, when I don’t understand a social situation or when I need to clean up a mess I created and don’t know where to start. I still have very poor distress tolerance and that’s unlikely to change anytime soon. I still find that everyday life takes a lot of energy. However, emotionally speaking, I feel better. I don’t experience nearly the level of irritability I used to. More importantly though, my post-traumatic symptoms seem to have lessened. Yes, I’m still dissociative, but I don’t experience nearly the amount of flashbacks I’d experienced before.

For 2020, I really hope to be able to be more alert. That probably requires me decreasing my antipsychotic dose, which is a goal I have anyway. I want to experience the full range of emotions more. After all, now that I’m not overcome with emotional flashbacks that often anymore, I want to open up my mind to what life has to offer.

I’m linking up with #SoCS.

Key #SoCS

I have a key to my room on a keychain. I would originally get a key to the particular home I live in in the care facility. I ultimately didn’t end up getting one. This may be because there’s not been a need for it. I mean, I can’t go to day activities or whatever on my own anyway.

Another reason may be the fact that I ran off several times. The unit is semi-locked, in that you need to turn a particular key to be able to open the door to go out of the house. The other clients can’t work this key, so are in a minor way prevented from leaving the home.

I, however, can work the key. I didn’t know I could until one day in late October, I was in a crisis and needed to find staff. There is no-one on my floor from 10:15PM on, but there are call buttons and listen-in systems and such for people to call the night staff, who is responsible for the entire facility. Anyway, I tried to find help that particular time.

Another time, around three weeks ago, I ran off because my flight response kicked in. I worked the key again and let myself out.

After this, it’s been discussed to remove the key from the lock, so that staff need to open the door with their own keys and I won’t be able to elope on my own. So far, that action hasn’t been taken, presumably because the measure would be just for me (since no other client can work the key anyway). They probably think I’m responsible enough (or should be) to handle this freedom. I’m not sure how I feel about it.

I do also have a key to my husband’s and my house. The reason for this is more symbolic, as I never go to this house on my own. However, I like it this way.

This post is part of #SoCS, for which the prompt this week is “Key”.

Dream #SoCS

I have a lot of vivid dreams. They suck at times. Sometimes they’re good dreams and I”m sad that they’re just dreams, but most times, they’re really distressing dreams. A few weeks ago, I dreamt that my husband was going to divorce me or I was going to divorce him because somehow (I can’t remember the details) my past identifying as a lesbian was getting in the way. Either I decided I was a lesbian after all or my husband got tired of me having identified as one. Or something. That dream had me distressed for days because I thought it somehow meant something. Like I was unconsciously unfaithful to my husband, which I have no intention of ever being.

Other times, I dream that I’m kicked out of or leaving the care facility. This also scares me, because I am to be very honest not 100% sure it was the right choice to go into it. I mean, yes, it’s much better for my self-care, but it does mean my marriage gets strained by my husband and me not being able to see each other as often as we’d like to or as we used to.

Last Thursday, I was in a bit of a crisis. I had been in the snoezelen® room for two hours on Thursday afternoon and as a result, couldn’t sleep. I also worried about my inability to travel to my husband each week by paratransit due to the limits on how much you can use that service. The fact that I had been in the snoezelen® room for so long and this is not the first time and I’m not sure what I can do during the day, made me think back to my old day activities. Then the fact that I cannot travel to my husband by paratransit even coupled with trains each week, made me think of leaving the facility and going back to live with him. I know this would be unwise in the long run, if for no other reason then because my spot at the old day center has been filled up already.

I E-mailed my staff at the old day center. Then I ran off. I made it to the bottom of the stairs, near the fire exit, before I realized I didn’t really want to run off. By then, the sleepover staff had heard me and called the night staff. She comforted me and I was able to go back to sleep. Back to more dreaming.

I am linking up with #SoCS.

Nuts! #SoCS

I first heard about the details of the Care and Force Act in the Netherlands a few days ago through a fellow mental health advocate. I’d heard of the bill being passed before, but never quite understood or cared what it entailed. Now I know, from both her opposing side and thesupporting side, namely my own long-term care organization.

As it turns out, the Care and Force Act impacts everyone who receives mental health or developmental disabilities services, whether voluntarily or not. Before this law, only those committed involuntarily to a psychiatric hospital, psychogeriatric nursing home or intellectual disability facility, could be subjected to involuntary care. Now, basically everyone who receives (or, I assume, is supposed to receive) care for a mental illness or developmental disability, can be subjected to involuntary care. Yes, even if you live at home. Support staff are allowed by this law to enter someone’s home without their permission and hold them down there, force medications on them, install cameras for monitoring the client, etc.

This all sounds pretty nuts to me. Of course, that’s what said mental health advocate said too. My care facility says that forced care is not allowed unless… and then they go on to list the law’s reasons involuntary care is allowed. This is a long list, including obvious reasons such as self-harm or aggression, but also “endangerment of the person’s development”. Well, WTF?

I understand the well-meaning intentions behind the law. For example, a client with Prader-Willi Syndrome, which makes them eat and drink without inhibition, can be prevented from accessing sources of food or drink. The long-term care facility said in this case (in a flyer by my care organization) they’d decided to disable the client’s bathroom tap so that they cannot drink like 5 liters of water at night. However, quite possibly, this could be affecting people like me who suffer with compulsive overeating. I am sensible in that I try to ask for help in preventing binges, but I mean, I’ve heard clients being told not to enter the kitchen because they eat lots of cookies and are prediabetic. Well, this is physical health, which I understand on at least some level. But isn’t this whole bill meant to make us all conform to the non-disabled standards of “normalcy” whether we want to or not?

And besides, there are huge budget cuts to mental health and disability services, so will this bill not just be used to facilitate lower levels of actually helpful care?

For example, I could in a worst-case scenario be confined to my bed at night so that I have fewer reasons to bother the night staff when I go to bed later than most other clients. Or I could be banned from using Facebook or the Internet altogether during certain times of the day for reasons such as my needing to socialize more, study, or whatever. Like I said, danger to one’s development is a grounds for forced care.

In theory, the law doesn’t sound too bad, but I can imagine treatment providers such as the ones in the mental hospital, whom I couldn’t trust, can misuse this law for very harmful purposes. Does this mean anyone deemed nuts or dumb, to use some slurs, is at the mercy of the so-called helping profession? It’s crazy!

This post is written for #SoCS, for which the prompt this week is “Nuts”.

Blue to the Blind #SoCS

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “blue”. The idea is to write about the firsst blue object you see when sitting down to write your post. Well, I am blind, so I don’t see anything blue as I sit here to write. I could be writing about things I know to be blue. The sky is blue. The ocean is blue. Or at least, they’re both seen as blue due to the sun’s reflection on them, or something.

I could be writing about my sensory cat, the soft toy I got for my 31st birthday from my sister. I think the cat is blue. It is filled with lavender, which I know is kind of blue too.

How would I describe blue to a person who’s never seen it? I can, at least, having had color perception as a child, still imagine blue in my mind’s eye. Someone born totally blind can’t. I once wrote a post describing the color green to blind people on my old blog. This was a journaling prompt, just so you know that no actual blind person asked me to describe the color green. Which, I should say, I really can’t.

I mean, synesthesia may be able to help. Blue is a “cool” color. It is the color of the number three in my synesthetic perception. Then again, even with synesthesia, everyone’s perception is different, so that wouldn’t make sense.

Interestingly, there are no blue letters in the word “blue” and the overarching color in the word is orange for the letter B.

I wonder now, does my synesthesia always make words look like the color associated with their first letter. I’m not sure, but the word “green”, even though the two E’s are green, isn’t really green overall. It’s more red with a touch of green. The G is red.

Mondays are green too, even though the word “Monday” has no green letters in it. Fridays are blue and yet again, there’s no blue letters in the word. Isn’t that fascinating?

The Daily Four (September 9, 2019)

I am once again joining in with The Daily Four. I am a day late with this one, as I didn’t discover it till nearly 9PM yesterday, which is my usual bedtime. Here are the questions.

What truly motivates you to write?
My readers, I guess. Before I became a blogger, I had an online diary and even when I still kept my diary on my private computer, I always envisioned someone reading it. I rarely write without an audience in mind. It doesn’t mean I get depressed if my posts don’t get (m)any comments, but I delight in finding that people read my work.

Other than that, I’m motivated by an intrinsic will to write. Even in the times of my personal computer diary, I would be proud if I wrote an entry everyday for a certain amount of time. The longest I’ve gone without skipping a day, is probably like three months.

What’s cluttering up your life today and what are you doing about it?
I don’t really know. I’m not one to be bothered by physical clutter easily, probably because I don’t see it and as such, it doesn’t distract me. However, there may also be this thing like mental clutter, where thoughts clutter up your life. That definitely happens to me and I’m not sure it’s a thing, but I’m making it into one. Worries tend to clutter up my life in this way. So does thinking about what I should be doing instead of doing it.

Did you enjoy a creative childhood?
Yes. I was a writer from an early age on. I also enjoyed drawing when I still had enough sight to do it. My mother was the most encouraging of my artistic creativity, but my father encouraged me to think creatively.

Have you ever wanted to write a book or if you have written a book do you feel accomplished for doing so?

Yes! I wanted to be a children’s book author when I grew up and have quite a few unfinished manuscripts. One of them was pretty far along. It was called The Black Queen and was about a teen girl whose mother had multiple sclerosis. I must admit, my stories were full of plagiarism though and not very imaginative.

I still intend on someday writing my autobiography. However, I’m not sure whether I’ll do it, as it requires quite a huge attention span to sit and write a book.

The Daily Four (August 26, 2019)

Over at A Guy Called Bloke, there’s a new meme called The Daily Four. I found the questions very inspiring, so I’m participating today.

What was the worst thing you did as a child?
I wasn’t a very naughty child, but my parents claim I terrorized the family. Being autistic, I’ve done a lot of destructive things during meltdowns. I ran away quite often and, according to my mother, was physically aggressive towards her as a teen. One day in particular, I remember ruining my sister’s birthday party (I think it was her 10th birthday) with my meltdown.

Growing up, what was your ideal dream job and did you bring that to a reality at all?
I’ve always wanted to be a writer. Though I only had one piece published in an anthology, I am pretty sure that blogging is a dream come true. I always thought that, like Anne Frank, I’d have my diary published someday. I guess I didn’t realize how unimportant my life is compared to hers.

What were the things you both liked and hated about your schooling?
I was often bored at school during my years in special education, but I liked it there nonetheless. At least I had friends, something I cannot say of my time at grammar school. What I most hated though, was the loyalty conflict I had, because my parents were in constant fights with my school over my needs.

Where there is a will, there is a way! Do you agree?
Yes, usually. Some dreams are unrealistic, but there’s always a way to come close. For example, of course, I will never be a plane pilot, being blind, but if I wanted to, I could arrange to see the inside of an airplane. In fact, I did at age twelve.

#FOWC: Diet

Today’s Prompt for #FOWC is diet. I have no experience following any diet. Not even a “No-Diet” diet such as Slimming World. I know, I do need to lose weight. I do need to moderate my food intake. I do know that Slimming World, Weight Watchers and the like can help some stick to a habit of moderation where it comes to food. However, I’m not sure I’m ready to stick to the diet.

I really want to stick to a plan where it comes to food, but I don’t want it to become an obsession. And, honestly, food can quite easily become an obsession, because in my thoughts, it already is.

I think I need to allow others some control over my food intake. It may be best if I take full responsibility, but given how badly my overeating can get, I don’t believe that’s realistic right now.

I hope that, once I move into supported housing, I will have a more structured day where it comes to my meals and snacks. I really hope I’ll subsequently be able to eat less. After all, whichever diet you follow, that’s the real deal.

My husband and I were talking about a care facility that wants me, and he asked whether they have side-by-side bikes. I think they do. They certainly do have a stationary bike. We were discussing getting rid of my elliptical, because there’s not enough room in our new house to put it if I only use it on week-ends. I was thinking of taking it to the care facility. Maybe they can use it at the day center that’s near the living facility. That way, I’ll still be able to go on the elliptical.

I, after all, didn’t say I would never lose weight again. I do want to, but now is not the right time. Then when is, you ask? Well, like I said, I’m genuinely hoping that, once I go to the care facility, I will be able to stick to a diet and exercise plan with the help of my staff.