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.

Gratitude List (May 13, 2022) #TToT

Hi everyone! What a week, what a day it’s been. I really feel like writing, but my head is buzzing, so I thought for a bit of cheer and calm, I’d do a gratitude post. As usual, I’m joining in with Ten Things of Thankful. Here goes.

1. I am grateful my staff were able to get the staffing schedule figured out and actually without temp workers needing to step in. The reality was, the temping agency didn’t have anyone available, so the regular staff ended up overworking, but this was a huge positive for me as it meant no unfamiliar faces.

2. I am grateful that a new staff was finally hired to work here. She did come from another home that’s part of my care facility, so they might now have a staffing shortage, but oh well, that’s not my problem. Until this staff came here, a lot of potential staff were given a look around my home but decided eventually not to want to work here.

3. I am grateful for delicious home-cooked chicken and rice yesterday. I actually cooked it with my day activities staff.

4. I am grateful for the smile on one of my fellow clients’ faces when I offered him a serving of the chicken and rice too. He is the only one in my care home who can eat rice without choking, so the staff, when cooking, never cook rice. I’m so happy he was pleased.

5. I am grateful for Sadje’s comment on my last blog post. I thought WordPress was acting up, since I wasn’t getting any comments. It might still be, but at least someone is able and willing to comment.

6. I am grateful for a visit from my mother-in-law on Tuesday. I am grateful we had a good talk with my assigned home staff. After that, we went to Rijssen, a town about a 30-minute drive from Raalte, to go for a walk and have coffee.

7. I am grateful I was able to mostly stick to my healthier eating plan over the past week. The only exception was the sausage roll I ordered in Rijssen. It not only was unhealthy, but came out of the microwave or so it seemed, so it definitely didn’t score an eight out of ten on how much I wanted to eat it. That’s the rule my dietitian gave me for treats: if they don’t score an eight or above on how eager I am to eat them, I might consider skipping them.

8. I am grateful that I did lose 0.4kg when I stepped onto the scale today as compared to last week.

9. I am grateful my semi-orthopedic shoes arrived back from the orthopedic shoemaker. The last time I sent them back, I had a blister on my right heel after only ten minutes of walking on them. Now I haven’t walked longer than that at a time on the shoes, but so far, so good.

10. I am grateful I got an E-mail from the store I bought the headphones that stopped working after two weeks at, saying they’ll give me my money back. I don’t have it in my bank account yet, but they said it could take up to five business days.

11. I did order new headphones and am grateful they work so far. They are a fifth of the price of the non-working ones, but still I am hoping they keep working.

12. I am grateful for paracetamol. I had to take it several times this past week for toothache or headache, but thankfully it worked.

What are you grateful for?

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.

Being God’s Beloved Child As an Enneagram Type Four

Today, I read some about the Enneagram again. As regular readers of this blog will know, I’m a type Four. Type Fours’ core motivation is to be fully understood as their unique and authentic selves. As such, Fours often focus on their being different from other people in some fundamental way. I am no different (pun intended) in this respect.

When I was in the early days of my psych hospital stay, my parents came to talk to the psychiatrist. They told him that, ever since I’d realized I am different because of my blindness at roughly age seven, I had tried to make it look like I was different in a ton of other ways. For instance, I identified as autistic (with which I was eventually diagnosed), thought as a teen that I was a lesbian (I am not), etc. Indeed, identity confusion was quite a common experience for me. According to my parents, this was all because I refused to accept the fact that I am blind, rather than because, well, I felt different in some rather interesting, somewhat impalpable ways.

Today, as I read the Day 1 section of The Enneagram Type 4 by Beth McCord, I realized I’ve always focused my attention on how I am not just essentially different from everyone else, but in some fundamental way more defective than everyone else. In reality, this is not true.

I am reminded in this respect of a sermon or something I once heard about a king having two daughters who both got lost in a shipwreck and stranded with farmers or something. Years later, the king found out that his daughters were still alive and he sent out some men to track them down. One daughter believed she was the king’s daughter, while the other didn’t. To whom does it matter? Of course, to the one who believes. This is probably what it is like to be a child of God: we are all children of God, but only those who believe it will delight in His kingdom. I find this comforting to my non-believer friends, realizing that God does not somehow condemn those people or something. Of course, there is the difference that God is all-knowing and all-powerful, so He could’ve made everyone believe.

However, my point is that there is nothing that makes me less of a child of God because of who I am or what I do. I am also not more defective than anyone else based on any of my differences, be it my autism or my blindness or whatever. Neurodiversity and disability rights are clear on that. No matter how fundamentally different I feel as an enneagram type Four, or as an autistic, multiply-disabled trauma survivor, or as just plain ol’ me, I am still God’s beloved child and I do not need to – cannot even – attempt to earn that status any more. After all, Jesus Christ purchased that status for me on the cross.

I am linking this post up with Inspire Me Monday.

#WeekendCoffeeShare (May 7, 2022)

Hi everyone on this Saturday evening. It’s rather late for coffee in my corner of the world, but I’m joining #WeekendCoffeeShare anyway. I don’t know whether we still have soft drinks in the fridge, as I don’t really care for them. My dietitian said that, if I don’t rate a treat at least an eight out of ten on how much I love it, I really should question whether it’s worth taking in the calories for it. Since soft drinks, including diet Dubbelfrisss, are extras, and I don’t rate them an eight out of ten at all, I’d much prefer water. That being said, if you’d like a soft drink, you’re more than welcome to go over to the staff or look in the fridge yourself. Let’s have a drink and let’s catch up.

If we were having coffee, I’d ask about your weather. Ours is good. We’ve had lots of sunshine, warm temperatures and almost no rain. In fact, I found myself pretty happy that we got a tiny bit of a drizzle this morning. Nature needs it (but then again it needs far more).

If we were having coffee, I’d share that this week started out rather rough, but has improved significantly as it progressed. I had some good meetings this week and we set out on the path of finding me a more suitable care home. For this purpose, the behavior specialist gave me some open-ended questions to think about for a “care home profile”. The answers I, my staff and the behavior specialist come up with will then be sent out to the care consultants within my care agency to hopefully find me a more suitable home.

If we were having coffee, I’d proudly tell you that I did quite a bit of walking this past week. I was finally able to go for a few 30-minute walks. They were exhausting, but I did it and I didn’t even use the elevator to go back up to the care home after the walks. Here’s hoping my physical fitness level is finally returning to some semblance of normal after the winter of me sitting on my ass and contracting COVID to top it off.

If we were having coffee, I’d tell you that, on Thursday, my one-on-one staff asked me whether I’d like to go to her home in the countryside to see her goats and their lambs. I loved it! Here are some pictures of me with the goats.



If we were having coffee, I’d tell you that, early this evening, I was startled because all doors in the entire home suddenly slammed shut. This normally happens when the smoke alarm goes off, but there was no smoke nor was there a smoke alarm going off. As it turned out, there was some power outage somewhere within the system. They’re currently working on solving it.

If we were having coffee, I’d share that I bought Cernit translucent polymer clay and am totally in love with a lot of tutorials that use it. I also looked up tutorials on how to use micas on polymer clay, since I still have some left from my soaping days. I can’t wait to start actually crafting again.

That being said, if we were having coffee, I’d tell you I’ve been struggling with wanting to do more than I can handle emotionally or physically lately. I’ve also been struggling with the staff overestimating my capabilities. It’s all rather frustrating when I want to be independent and productive but can really not cope.

If we were having coffee, lastly I would however say that I still find escapism in reading, listening to music, blogging and watching YouTube videos even if I don’t get to actually make the things I see.

How have you been?

Gratitude List (May 6, 2022) #TToT

Hi everyone on this first Friday of May. My husband and I always count the days from May 4 till May 8 as special days. May 6 is only special because Pim Fortuyn, a Dutch politician, was murdered on this day in 2002. Not really a cause to celebrate. Nonetheless, I’m doing a gratitude list today anyway. As usual, I’m linking up with Ten Things of Thankful (#TToT). Here goes.

1. I am grateful for a good talk with the behavior specialist on Tuesday. She was really understanding of my wish to eventually find a more suitable care home.

2. I am grateful I finally had a face-to-face meeting with my community psychiatric nurse again after several months. She’d been off work for a while and, before that, I had COVID and had to talk to her on the phone. I am so glad she’s back!

3. I am grateful my nurse practitioner called me on Tuesday, after I’d E-mailed him on Monday evening because I’d been in crisis. We will soon be planning a meeting with the behavior specialist too so that my nurse practitioner can get a more complete picture of my mental health.

4. I am grateful my husband’s car didn’t need replacing or repairing after all. The financial setback I mentioned last week, was related to his car. It made a weird sound, which could be the oil level, but could be a lot of other things, likely to be very expensive to repair. My husband was considering trading in the car if it wasn’t the oil level. Thankfully, that’s what it turned out to be.

5. I am grateful the store I bought the headphones at (the ones that stopped working after two weeks) finally sent off the headphones to the manufacturer. It took my staff making a phone call on Monday for them to send them out and another phone call for them to confirm they’d actually been sent out, but now I’m hoping they’ll be fixed soon.

6. I am grateful I am still allowed to borrow the headphones the Care Lab loaned us before I even originally ordered the ones that stopped working. You normally get to only keep products on loan for like a month or so, but the staff said they’d contact the Care Lab.

7. I am grateful I was allowed to go into the nearby care home’s garden to photograph their tulips yesterday. They are beautiful! I had been wanting to photograph them all week, but hadn’t been able to find the right time of day either sunshine-wise or with respect to being able to ask the staff whether I could enter their garden.

8. I am grateful for home-cooked macaroni this evening. It was delicious! Yesterday, I also had some leftover macaroni that we still had in the freezer from the last time we’d cooked it.

9. I am grateful for some crafty inspiration again. I finally did a little crafting today.

10. I am also grateful I finally seem to be in a reading groove again. I have truly been enjoying my young adult novel, Thrive. This is the final installment in the Overthrow trilogy and it’s been out for a year already, but because its prequel was a bit disappointing, I didn’t get to reading this one.

What have you been grateful for lately?

Sharing this post with Flower of the Day too because of the tulip picture.

Locus of Control

Like I said on Tuesday, I am regularly reminded of the need to change my attitude rather than my external circumstances, such as my living situation, in order to improve my quality of life. There may be some truth to this, in that I will always take me with me wherever I go. In this sense, having an internal locus of control – a sense that I myself can change my outlook on life, irrespective of external circumstances – may be the more functional choice. But is it true?

Ultimately, whether I change my attitude or I change my circumstances, doesn’t really matter, in that I am the one doing the changing, and in this sense am the one at least apparently in control, when in reality, I’m not. I, being a Christian, believe that God is ultimately in control, but even if He isn’t, control seems to be a rather elusive thing.


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

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.

The Wednesday HodgePodge (May 4, 2022)

Hi everyone. I’m participating in the Wednesday HodgePodge once again. Here are Joyce’s questions and my responses.

1. May Day! May Day!…last time you shouted for help? Or maybe just asked?
I’d honestly never heard that expression. That being said, I shout for help quite regularly, most commonly when I’m having a horrible flashback or panic attack. Last Monday, I probably didn’t shout for help, but did plea for help. My one-on-one support staff had left me alone because I’d told her to go away in an irritable voice while melting down. This caused me to spiral into crisis. I will spare you all the details, but I eventually came to my senses and was able to cry out for help.

2. What’s something you may do this month?
Visit my sister and her family. I most likely will, since my sister is expecting a baby very soon. Other than that, there are just too many things I may or may not do, such as finish a book, get to another polymer clay project, etc.

3. “April showers bring May flowers”…is this true where you live? What’s blooming? What’s your favorite springtime blossom?
It’s somewhat true, but we haven’t had that much rain in April this year. I’m not really sure what’s blooming here. I do know one of the nearby care homes has tulips blooming in its garden. My favorite springtime flowers are probably hyacinths, but I love many others.

4. What’s something you learned at your mother’s knee?
I am reminded immediately of a nursery rhyme that goes “One, two, three, four, paper hat, paper hat.”. When my mother would count to four, I’d always reply “Paper hat”. When my father would count to four, conversely, even as a toddler, I’d reply: “Five!”.

5. Share a thought about motherhood.
Now we’re probably supposed to share something positive, such as how beautiful the gift of motherhood is or something. I, however, am not a mother and don’t have the greatest memories of my own mother’s mothering me. Besides, my father was my primary caretaker. Not that my memories of him are any better. All that being said, I feel strongly that mothering is a skill that doesn’t necessarily come naturally as soon as a child comes out of its mother’s womb. I wish it were this way!

6. Insert your own random thought here.
Since it’s Liberation Day (from WWII) tomorrow here, I would like to take a moment to show my gratitude for living in freedom, peace and in a democracy.

Dream Small

It’s interesting that, since deciding to want to start the process of finding me a more suitable care home, I’ve had the lyrics to the Josh Wilson song “Dream Small” in my head a lot. This is a Christian song about the fact that, while there’s nothing wrong with wanting to change the world in big ways, small contributions matter too.

Of course, that’s probably not the meaning behind these lyrics being stuck in my head. I don’t dream of ending world poverty or solving the climate crisis. In fact, the reason I want to move to another care home, has little to do with wanting to improve other people’s lives.

However, in a sense, the title of this song speaks to me, as do certain points in the lyrics. I may want to change my life in a big way by moving to another care home (assuming one can be found), but that doesn’t mean I don’t need to pay attention to the little ways in which I can improve my life right now. I still need to focus my attention on my current quality of life.

I am grateful that I finally found the motivation to look up a polymer clay video tutorial again. I couldn’t at the time actually go and work on the project taught in the tutorial, but I will later this week.

I am also grateful to have started reading again. I finally picked up Thrive by Kenneth Oppel, since I really need to finish the Overthrow trilogy even though Hatch was a bit disappointing.

All that being said, dreaming small does mean that small setbacks can get me to become unstable easily. For example, yesterday I found out that the headphones I bought at the end of March and that stopped working two weeks later, most likely hadn’t been sent out to the manufacturer by the store I bought them at. The lack of clarity about this sent me spiraling out of control. It may just be a pair of headphones – material things, money if you will -, but to me, the situation was quite unbearable.

With respect to the care home situation, I am also reminded of a fellow patient on the locked psych unit who told me I needed to focus on changing myself, not my living situation. This was over fourteen years and four living places ago. I do not fully agree, but partly, I do, in the sense that my distress is partly caused by internal sources. If I keep focusing my attention on external circumstances, these internal sources will not change. If I can reframe my thinking around those, I can decrease my distress. The problem is, I can’t usually reframe my thinking.