Making Up My Mind: Why I Want to Live in an Institution

Last week, the behavior specialist for my care home came by for a visit to discuss my housing profile. This is the thing with my wants and needs with respect to a new prospective care home on it. I initially wasn’t too picky, saying for example that I would most like to live on institution grounds but if that isn’t possible, a quiet neighborhood home would do too. Then when I talked to my husband, he said that an integrated neighborhood doesn’t get much quieter than my current neighborhood in Raalte. He also told me I don’t need to make compromises about where I want to live as of yet, since I will be looking to stay in my prospective new home for the rest of my life.

The reason I initially compromised about living on institution grounds, is that my current care agency has only one such institution and that one at least wasn’t admitting new clients back in 2019. I’m not sure about right now or whether not admitting new clients means they aren’t keeping a wait list either. However, I was wary of contacting other agencies due to the bureaucracies involved. Then my husband said though that this shouldn’t be something for me to worry about.

Eventually, after talking about it with my assigned home staff, my husband and my mother-in-law, I decided to make up my mind about my wishes for the housing profile. I said I’d really like to be looking at institutions.

This does mean I had to drop my objection against contacting external agencies. I offered two agencies we could contact other than my current one. One has an institution in Apeldoorn, the city I grew up in, and another in a small town elsewhere in Gelderland, about a 45-minute drive from Lobith, where my husband lives. For reference: Raalte is about a 75-minute drive from Lobith and I did agree with my husband that I won’t be looking at care homes that are farther away. The other agency has an institution near Apeldoorn and one near Nijmegen. I’m not sure the one near Nijmegen was acceptable distance-wise to my husband, but the one near Apeldoorn certainly was.

Both agencies are unlikely to refuse to consider me based on my IQ alone, even though both primarily serve people with intellectual disability. The reason I think so is that both also serve other populations and I have some experience with both agencies.

I do feel all kinds of feelings about the fact that I’ve made up my mind. For one thing, I do feel some form of shame about wishing to live on institution grounds. Back in 2006 and 2007, I wrote agitated articles about the fact that deinstitutionalization was said not to be working by some non-disabled advocates for the disabled, claiming it was poor care, not community living, that was at fault. I meant, for example, the fact that people in the community need more support to go outside if, for example, they aren’t safe in traffic, than they would need in institutions. Then, if that support isn’t provided, it’s no wonder they’d rather go back to living in the woods.

Now one of the reasons I want to go into an institution is the fact that I don’t feel safe leaving my home and the only way of preventing me from leaving it anyway is locking me up. Now tell me again you want the least restrictive environment.

Another feeling has to do with the institution in Apeldoorn specifically. My family home was quite close by that institution. So close in fact that I remember one day when I was eighteen, having an encounter with the police and being asked whether I’d run away from there. I know my parents would feel intense shame if I moved there. Then again, they probably feel intense shame at the fact that I live with people with intellectual disabilities already. Besides, who cares what my parents think?

I do have a few things I need to consider when looking at external agencies. For example, my current agency provides free, pretty much unrestricted WiFi in all rooms of all its homes and it’s available to clients if they wish to use it, which I do. I am not sure the other agencies do, but I will inquire about this when the need arises.

Early Experiences With Medical and Dental Care

Today’s topic for Throwback Thursday is doctors’ or dental visits. I have many early memories of medical care, probably because I, being multiply-disabled, often had to visit the doctor. Until I was about nine, that is, when my parents, my sister and I moved across the country and my parents stopped taking me to doctors altogether except when I had everyday ailments.

An interesting question Lauren asks in her original post, is whether your parents were scared of doctors or dentists. Well, truthfully, yes, mine are. My mother had her own fair share of traumatic experiences involving doctors, among which a situation that would’ve been considered medical malpractice had it been in the U.S. surrounding my premature birth. My father, I don’t know. He probably feels he’s smarter than most doctors and hence considers spending time with them a waste of his own time.

All that being said, up till the age of about nine, I was taken for medical care when I needed it. I don’t think I was really taken for health checks except those part of preemie follow-up. I don’t remember most of these visits, except the ones to the eye doctor. My eye doctor was always, and I mean literally always running at least two hours behind schedule. Waiting in the waiting room for her was the worst. Well, no, the second worst: the absolute worst was waiting for her to come back after she’d put dilation drops into my eyes.

I don’t think I was very afraid of needles as a child. In fact, when I needed to be put under general anesthesia for my various surgeries, as soon as my parents allowed me to make the decision myself between the anesthetic mask and the injection, I always chose the injection. I remember being horribly afraid that I would get the mask when I had to have cataract surgery in 2013, even though I’m not even sure they do this on adults.

One thing I did always remember was that the hospital staff would stick me in my toes rather than my fingers for finger pricks, because the nerves in my fingers should not be damaged because of the fact that I read Braille. I had to have a finger prick last year and told the medical assistant that she was supposed to stick the needle in my toe. She explained that she couldn’t, so I reluctantly agreed to have her stick the needle into the side of a finger I hardly use for reading.

As for dental care, I think I did have proper dental check-ups when I was young. I didn’t have problems with my teeth until I was about eleven and fell and a bit of one of my front teeth broke off. That was the first time I started worrying about my teeth. I did need braces, which was quite an ordeal as the orthodontist never explained properly what I could and couldn’t eat, so there were always parts of my braces getting loose.

I am not very scared of doctors. Dentists though, well, it’s complicated. I am scared of dentists, but also scared of losing my teeth. This has led to some rather odd situations in which I sought out dental care that I might not have needed and didn’t seek out dental care that I did need. Thankfully, now that I live in long-term care, I do get regular dental check-ups and the staff and dentist do try their best to make me feel as comfortable as possible.

What If I Lose My Care?

Today’s prompt for the Weekly Prompts Wednesday Challenge is fear. More specifically, the organizers ask us to consider whether we ever worry about the “what if’s” of a situation without looking at the positive present. Fear, for me, takes many forms, including post-traumatic stress, in which I relive the past. However, it also includes worrying about the future indeed.

Specifically, I worry about losing my support. Of course, this is a realistic worry in a sense, in that my one-on-one support has only been approved until sometime in late 2023. However, right now it’s only May 2022 and a lot could happen between now and then.

This worry also takes unrealistic forms. For example, sometimes I’m convinced that the psychologist from the psychiatric hospital who diagnosed me with dependent personality disorder to “prove” that I was misusing care, will find out that I’m in long-term care and will report me for care fraud. If she does and if the authorities follow along with her allegation, I will not just lose my one-on-one, but all my long-term care and will essentially be required to move back into independent living with my husband.

In a sense, the fact that this “what if” is my worst fear, does prove sort of that I do have dependent traits. However, dependent personality disorder or dependency in general is not the same as misusing care. After all, I never disputed my psychologist’s claim that I wished to be cared for. What I disputed, is her claim that this wish is unfounded, in that I don’t really need this care.

In a similar fashion, recently I’ve had “what if’s” in my head about moving to another care home. What if the staff there expect me to be much more independent than I am right now? In a sense, one reason I want to move to another care home is to have a better quality of life, a broader perspective. This may include greater independence. But I don’t want to be forced into it.

I am reminded of a question on a personality test I had to fill out for my autism re-assessment back in 2017. The agree/disagree statement went something like this: “Being left behind alone is my worst fear.” I didn’t know how to answer it back then, as I thought at the time that being in serious pain would be worse, so I ticked the “Disagree” box. Then again, at the time, I hadn’t experienced significant time being left to my own resources in at least nine years. Now, I would certainly tick the “Agree” box even though I know it was a red flag for dependent personality disorder. I don’t care.

What if I lose all my care and am left to my own resources? During the same assessment, I had to answer a question about how difficult it would be to stay on my own for a couple of days. I ticked the “Very difficult” box, not the “Impossible” box that I would have ticked now. Then again, if my husband had stocked up on food and I had my computer and phone with me, would it literally be impossible? Hmmm, well… emotionally, yes, it would be.

Zone: Describing My Creative Space #AtoZChallenge

Hi everyone and welcome to the last day in the #AtoZChallenge. About half of the times I’ve completed the challenge, I’ve chosen “ZZZ” for sleep as my topic for my letter Z post. I originally wanted to do the same now, but I really can’t think of ways in which my sleep relates to my creativity other than the obvious: that I need enough of it to be creative.

Instead, I am going with the word “Zone” and describe my creative space, or where I feel like I can “zone in” to my creative self.

I blog wherever I have access to my phone or computer. I could also probably be crafty in many places. However, the place I feel most comfortable being creative in, is my room in the care facility.

I have a desk, which I’ve had for over fifteen years. This desk, I use to have my computer and iPhone on. I prefer typing on my laptop keyboard, but can also type on my iPhone’s external keyboard. I cannot type anything beyond simple messages, usually consisting only of one word, on my iPhone’s screen directly. Even with the external keyboard, due to WordPress having done away with the classic editor on mobile devices, I much prefer to blog on my laptop. For this reason, when I want to blog and I’ll be away, such as at my and my husband’s house in Lobith, I’ll take my laptop with me.

For crafting, I have a separate table. I do need to clear it out when I am finished for the morning or afternoon, as I eat at that table too. I already showed you all where I keep my craft supplies in my letter K post. I can easily reach those from my table.

Then there is, of course, the shelf above my desk, where I display my finished projects. That’s part of my creative zone too, in that it inspires my creativity.

Joy in April

Oh my, how time flies! I fully intended to write my monthly update on my word of the year, which is “JOY”, last Thursday, but forgot. Thankfully, there’s still about ten hours left in April to share my reflections on how I did this past month. I am linking up with the Word of the Year linky, as well as Lisa’s One Word link-up.

Early in the month, I did quite well. I enjoyed my craft of polymer clay to the fullest. Among other things, I discovered color mixing. I was full of new ideas and really burst with energy.

I also enjoyed quiet time and my spiritual life. I was engaging with the Bible on a daily basis.

I also spent time involved with personal growth in general, watching videos on, for example, the enneagram. This is not necessarily Christian, but it is not against the faith either and there are many Christian enneagram experts.

Unfortunately, as the month progressed, I slipped into an emotional rut. I have been neglecting my Bible reading and my quiet time now involves falling asleep to instrumental music. That isn’t bad in itself, but I’d really like to spend more time focusing on God. I’ve noticed, in fact, that I’m drifting away from Him. I could blame this on my low mood, but really it could be the other way around too.

I also haven’t been enjoying my creativity as much as I used to. This goes for both my polymer clay and my blogging. With blogging, this may have to do with the fact that the #AtoZChallenge is coming to an end and the last letters are usually harder than the first. However, I don’t engage as much with other bloggers as I used to early in the month either.

I am also not enjoying my food as much as I used to. Like, we had pizza yesterday. While I appreciated it, I didn’t savor the food as much as I would like to have done. I am reminded in this sense of the mindful eating exercise I did in early March and how I’d really like to apply it to foods I love more.

Overall, early in the month, I did quite well, but towards the end of the month, I’ve been slipping towards the opposite of joy. This brings me to one of the exercises that Lisa provided in her One Word E-mail for this month (I think), which was to look to the opposites of your word and reflect on what they can tell you about your word. Some of the most relevant antonyms of joy include:


  • Depression: well, I wouldn’t say I’m depressed (yet), in the clinical sense. Having been there, I know that my current low mood is different, but I do need to watch out that I don’t slip into the pit of depression.

  • Melancholy: I’ve definitely been feeling this way. Melancholy is a bit of a low mood, with an edge of romanticism attached. I feel this resonates with me in relation to how I feel about living in my current care home.

  • Misery: this sounds a bit, well, too negative for me right now. A state I want to avoid at all cost.

  • Sadness: yes, I’ve felt sad when my fellow client passed away early this month, but other than that, sadness just doesn’t cut it.

  • Seriousness: certainly, yes. I’ve been far too serious about my life lately, which has resulted in my not enjoying the fun parts.

All this being said, in the coming month, I’m hoping to gain some joy back and crawl out of the pit of melancholy and seriousness.

Works in Progress: How I Deal With Having Unfinished Projects As a Creative #AtoZChallenge

Hi and welcome to my letter W post in the #AtoZChallenge. For today’s topic, I chose “works in progress”. You know, those unfinished projects lying around forever waiting for me to get them done.

Right now, I have several works in progress with respect to my polymer clay. The most striking example is, of course, the mobile I’m creating for the baby girl my sister is expecting. I have yet to bake the last of my figures to go onto the wire, but I still also need to buy the wire for the actual thing.

Next up is of course the slice of a tree trunk I have had lying around for at least a month, waiting for me to build a forest scene on it. I initially thought of putting the polymer clay hedgehog I crafted about three weeks ago – which also took me forever to create – on it, but now I’m thinking of doing a squirrel.

Anyway, did I show you all the hedgehog yet? I don’t think I did. Here it is!

Lastly is of course the tulip I intended on crafting for my mother. Well, I tried. I mixed all the colors, which went well, but crafting the actual tulip was harder than I thought. That plus time pressure made me eventually give up and send my mother a polymer clay dolphin from my collection instead.

One reason I prefer to have smaller projects, is that having too many works in progress overwhelms me. This may be a reason I rarely have blog posts in my Drafts folder longer than a few hours to get back to later. Besides, if I start something then forget midway what I wanted to create, that’s a problem too.

Eventually, when I have had an unfinished project lying around for too long, I’ll discard it and start another, hopefully smaller, project.

Values: How My Creativity Reflects and Supports My Personal Values #AtoZChallenge

Hi everyone and welcome to my letter V post in the #AtoZChallenge. This was a hard letter to find a topic for, but with the help of The Year of You for Creatives I found one: personal values. Core values are the abstract qualities you find important in life, such as trust, love, connection, growth, etc.

Now I haven’t really ever taken the time to evaluate my core values, so it is quite hard to say whether they are reflected in my creativity. However, when I give it some thought, I realize one of my main core values is authenticity. This is still hard to express in my creativity, particularly my polymer clay. Like I said yesterday, after all, most of my creations are still pretty much copies of what I see online.

In my writing, I do try to express my authentic self. This does mean I am quite open about my experiences of, for example, mental illness. I used to overshare to the point where it got uncomfortable for the people around me. Now, though some of my relatives probably still perceive me as oversharing, I do try to be mindful of other people’s privacy.

Another of my core values is connection. This is reflected in the fact that I want to share what I create and know about other people’s creative work. This is one reason I have a blog. It is also one reason I started responding to people’s comments on my blog. For the first so many years that I kept a blog, I didn’t do this, because I felt it’d corrupt my stats somehow (don’t ask me why). I now not only know that engaging with your commenters is the ethical thing to do, but I also really value the connections I develop through interacting on my blog.

Connection is also a reason I’m in Facebook groups for polymer clay and why I share my creations on Facebook. I don’t really do Instagram, although I might want to learn to use it someday for my creative pursuits.

Self-determination is another core value. I initially wrote “independence”, but that doesn’t quite do it justice. Even though I’d really like to be independent, after all, that’s just not realistic where it comes to my crafting. I do, however, want to make my own choices and do as much as I can by myself.

Lastly, growth is a core value of mine. I always aim for progress, no matter how small. I do not always find this is reflected in my work, because I sometimes don’t see the progress I’ve made. I could really improve in this area.

Unique: Developing My Personal Style As a Creative #AtoZChallenge

Hi everyone and welcome to my letter U post in the #AtoZChallenge. Today, I want to talk about developing my own unique style as a creative.

As a writer, I think I do have a unique style. I have certain words that I use often, even though I try to vary my language too. In fact, I may have so much of a specific word choice that it gets boring at times. I really want to step outside of my comfort zone where it comes to my writing more and explore styles that I don’t normally employ. This includes poetry and flash fiction.

As a polymer clay artist, I haven’t really developed my own style yet, in the sense that most of my current creations are still based on the creations of popular YouTubers. Some are actually pretty much copies.

An interesting exception may be my unicorns. I do give a specific twist to my designs, most notably in the twisted mane and tail.

Unfortunately, with respect to my polymer clay, I struggle to step outside of my comfort zone even more than I do in the area of my writing. I fear ruining my clay, even though obviously that’s no problem, since I can always buy new clay. Honestly, now that I think of it, I may not have a unique style in any of my creative pursuits at all, but may just be sticking to a particular comfort zone. I really need to start experimenting more!

It may all be related to the fact that I’m not as imaginative as I’d like to be. Then again, Julia Cameron of The Artist’s Way (I think) encourages her readers to explore creativity by experimenting. She also says that, to be a good artist, you first need to be a bad artist. In this sense, maybe I should really start making my own unique creations rather than copying from YouTube more. They may turn out rubbish, but so what? Some famous quote I think said that something’s better well stolen than poorly created. I think I disagree.

Time Management in My Creative Process #AtoZChallenge

Hi everyone and welcome to day 20 in the #AtoZChallenge. Today for my letter T post, I have a topic related to my letter D and R posts. After all, I am going to write about time management as it applies to my creative work.

I don’t have any real obligations where it comes to my creative work. I mean, in my blogging, when I sign up for a challenge such as this one, it’s just to be able to give myself some greater goal. Similarly, I don’t take on any assignments in my polymer clay, so I am basically the only one setting my deadlines.

That doesn’t mean I don’t feel any pressure. I get a thrill out of knowing I’ve made a long streak of blogging on here or have been able to finish a big project “on time”. I also get stressed when I feel I’m not meeting my own goals.

I currently blog everyday and, over the past year or so, have maintained an average of at least three to four blog posts a week. I usually write my blog posts during my time I don’t have direct one-on-one support, so between 1:30 and 4PM on weekends or after 8PM each day.

One of my goals in the care facility is that I do something “useful” each day. This could be a creative activity such as polymer clay, but on days when I have appointments with mental health, those count as my “useful” activity of the day.

Given that I don’t keep track and my activity level fluctuates a great deal with my mood, I cannot say how much time on average I spend on my creative work during the week. Sometimes, I make something out of polymer clay everyday, while at other times, I am lucky if I manage one simple activity, such as mixing a predetermined color, a week.

I tend to feel useless when I’ve not accomplished much in a given week, in the sense that I haven’t finished any big projects. However, this is also related to my perfectionism. To put things into perspective, when I was still in the psych hospital, I struggled far more to get things done than I do now.

Sensory Experiences That Influence My Creativity #AtoZChallenge

Hi everyone. Today is day 19 in the #AtoZChallenge and it’s time for my letter S post. I was initially feeling a bit uninspired, so looked to The Year of You for Creatives again. In it were several prompts about sounds and sights influencing your creative work. I decided to expand on the prompts and write about sensory experiences in general.

Most times, I prefer to work on my polymer clay in relative silence. That is, I do speak with my staff, but only about the polymer clay project we’re working on. I also don’t have music on in the background. To be honest, I haven’t even actually tried it. It may be relaxing.

I sometimes do have an essential oil blend in my diffuser. Smells can inspire me, as they give off a relaxing or energizing vibe, which I can then translate into the colors I use for my polymer clay projects.

I also find that I’m inspired by sights. I mean, I cannot actually see colors anymore, but imagining a particular color in my mind’s eye does inspire me.

When I write, I do occasionally have music or a soundscape on in the background and I often have an essential oil blend in my diffuser. Right now, I have a playlist of rainforest sounds on Spotify on. My oil diffuser currently diffuses a blend of bergamot, orange, spearmint and ylang ylang essential oils.

I find that music, soundscapes, colors and smells inspire my writing, particularly my poetry and freewrites. I have a journal in the diary app Day One specifically for freewrites and I love to write stream-of-consciousness style based on a snippet from a song or a sound. I haven’t yet included the songs themselves into my journal, as that works only with Apple Music and I don’t use that.

What sensory experiences inspire your creativity?