The Future Is Not Clear #SoCS

SoCS Badge 2019-2020

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”.

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.

#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.

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.

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.

#WeekendCoffeeShare (April 24, 2022)

Hi everyone on this last Sunday afternoon of April. Can you believe that we’ll be in May this time next week already? I certainly can’t. The weather’s okay: sunny and about 16°C. I can’t wait for higher temperatures though. Anyway, I’m joining #WeekendCoffeeShare today. I haven’t had my afternoon coffee yet, but am likely going to take a break while writing this post to have it. You can have a cup as well. The staff are also trying to get me to try some type of drink that sounds much like what Americans call Kool-Aid: a powdered substance (sugar-free or so I’m told) that you add to cold water and that then creates the flavor of juice. I’m pretty sure I’d prefer plain water though. Anyway, we have this stuff in the apple-flavored variety, so if you’d like a drink of that, get yourself one. Let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that this week, I’ve been experiencing quite the rollercoaster ride of emotions. Due to a number of triggers, I got to doubt once again whether I want to stay in my current care home forever and, on Thursday, I more or less decided that I at least want to discuss the possibility of looking for another place. I have no idea whether a voluntary move is even possible and it’s certainly not something I’m looking to decide on quickly. My assigned home staff E-mailed the behavior specialist and manager to see if they can discuss the possibilities and process with me.

If we were having coffee, I’d share that I also experienced quite a bit of emotional dysregulation recently. I am having some major flashbacks and identity confusion. It looks like a new factive alter (an alter based on a real, outside person) may have formed recently.

If we were having coffee, I’d tell you that tomorrow, I’ll finally be discussing lowering my antipsychotic dosage with my nurse practitioner. I’ll most likely take the first step sometime in early May. Even though I’m not feeling at my best right now, I want to move forward with it.

If we were having coffee, I would share that I did enjoy doing some polymer clay work recently. Mostly, I just mixed colors. Like I said before, last week, I got the Fimo Professional true colors six-pack, which comes with a mixing chart, from the day center. I love it! My mother has her birthday on Thursday and I’m fully intending on making her a tulip out of polymer clay with all colors I mixed myself.

If we were having coffee, lastly I’d share that I went to Lobith yesterday. It was good being with my husband once again. We got Domino’s pizza and had orange tompouces (a Dutch-specific pastry) in honor of King’s Day on Wednesday. This morning, my husband went out to the local bakery to buy us croissants. Yum!

How have you been?

Gratitude List (April 16, 2022) #TToT

Hi all on this Saturday before Easter Sunday. I have no idea whether English-speaking people have a word for this Saturday. In Dutch, it’s called “silent Saturday”. I’m having a relatively good day. I thought I’d do a gratitude post once again. As usual, I’m joining in with Ten Things of Thankful. Here goes.

1. I am grateful for physical therapy. The physical therapist came by twice this week. Once for my back, which had been planned already. The second time, she came by for bad pain in my right calf. It had been going on for a few days, so really I could’ve told her the first time, but it wasn’t so bad then. Thankfully, after some massaging and a bit of exercising, the pain is almost completely gone now.

2. I am grateful for a good nurse practitioner’s appt on Monday. It was really validating.

3. I am grateful for some distractions from anxiety in the form of polymer clay color mixing. I created some really cool colors.

4. I am grateful my day activities staff ordered the true colors six-pack of Fimo Professional polymer clay, which includes a color mixing chart, as well as large packs of white, Indian red and brilliant blue Fimo Soft polymer clay. (With white, Indian red, brilliant blue and sunflower yellow, which I already had, you can create the colors from the recipes I bought.) The best part is, the day center actually pays for it!

5. I am grateful the Fimo Professional isn’t as crumbly as it was when I last used it. It was actually a bit on the soft side, but still useable.

6. I am grateful for a good Easter lunch yesterday (or should I say Good Friday lunch then?) at the day center.

7. I am grateful for sunshine today and most of the week. Only yesterday was a bit of a cold and cloudy day.

8. I am grateful my computer accepts USB sticks and external hard drives again for now. It for a long while would crash when I fed it a USB stick or hard drive through the USB port. Now, I was able to put both my external hard drive and a USB stick into the USB port without problems. Unfortunately, my wedding pictures aren’t on my external hard drive, like I’d hoped, but I was able to locate some old documents and transfer them into my OneDrive.

9. I am grateful for renewed energy. I decided to have a nap this afternoon and feel so refreshed.

10. I am grateful I won’t be kicked out of the care facility. I’m horribly scared of this again after some recent events, but my staff reassured me.

11. Bonus thankful: I am so grateful for Jesus! It is Easter tomorrow, so I can’t leave this post without mentioning Christ.

What are you grateful for?

Gratitude List (April 1, 2022) #TToT

Hi everyone. I really want to write another blog post tonight. Specifically, I want to write a gratitude post. As usual, I’m joining Ten Things of Thankful. Let me share those things I’ve been grateful for in the past week.

1. A good appt with the behavior specialist. Behavior specialists, actually, as the one I used to see was a temp and she was introducing me to the new one. We had a good talk.

2. The best Asian food ever gone even better. Read: spicier. Like I said last week, a staff was leaving, the same staff who got me the best Asian food ever a few weeks ago. As a goodbye present to me, she promised me another serving of the food. This time though, she got a “mildly spicy” version. Well, according to the Indonesian cooks, at least. It was amazing, but I did get a slight stomachache from it afterwards.

3. Inspiration to write again. I’m now on a six-day streak on my blog and have picked up writing in my diary app, Day One, too.

4. Great blog stats and engagement. Okay, I feel as though the majority of the page views I got on the day I got nearly 300 this past week, were probably bots, but oh well. I am also getting lots of engagement, which is awesome.

5. Paracetamol. I have been having some back pain lately, but thankfully, it responds well to paracetamol.

6. The new iOS version. It actually finally solved the major Braille-related bug that had been in existence for literally months.

7. My new headphones. I finally decided to order new noise canceling headphones and decided to go for the Bose QuietComfort 45 ones. At first, I was a little disappointed, because the manual said they could be used with an audio cable while on (so that I can use noise canceling). Apparently not. However, other than that and the fact that its spoken announcements are in English only, it’s quite good.

8. The fact that I’m still overweight rather than obese despite a lot of “cheat” meals and treats over the past week. In fact, I only gained 0.1kg.

9. The fact that it wasn’t raining or snowing when I went to the day center this afternoon (it had been snowing and raining a lot during the rest of the day). Plus the fact that, even though the daytime temperature didn’t get above 4°C today, it didn’t even feel all that cold thanks to my winter coat.

10. The fact that a fellow client made me laugh with his April Fools joke this evening. The staff did check whether I was okay with a little prank and I said I was. In the end, I didn’t really understand the prank, but we both laughed at the verbal joke about April Fools that went along with it.

What are you grateful for?

Reasons I Think I Want to Stay in My Current Care Home

Last week, I was discussing my insecurity about living in my current care home with my assigned home staff. I still keep searching for another place to live, even though staff keep reassuring me that I don’t have to leave. Part of the reason for this is probably habit, in that I feel I ought to be looking for another place because that’s always been the case. However, my assigned staff also challenged me to write down a list of reasons I want to stay in my current care home and a list of reasons I may want to leave. Today, I’m going to share my list of reasons I think I want to stay. I’m pretty sure I won’t be sharing my list of reasons I may want to leave, as these are more like things I am hoping to find a solution to within my current care situation. Anyway, here are the reasons I probably want to stay in my current care home.

1. My one-on-one support. Of course, this is government-funded and may be transferable to another care facility, but I do like the fact that my current care team really think my care is important, in that staff shortages won’t easily mean my care will be cut.

2. The fact that I have gotten to know most of my staff. Of course, no-one can guarantee they’ll remain part of my team for the foreseeable future, but if I leave, the whole team will be new at least at first.

3. The fact that my staff help me with activities of daily living. This is a bit of an uncertain thing, as I sort of feel I ought to be able to do more of them independently.

4. The fact that I get day activities in the home and am the only one who does for now. Even though it may be possible to get day activities in my room at another care facility, I might not be the only one. I like the peace and quiet during the day as it is now.

5. The fact that fellow clients hardly make an appeal on me. Most leave me alone most of the time. This is a good thing, but I did put in my other list that I wish to interact with other clients somewhat more than I currently do.

6. My own room with my private bathroom, kitchenette and balcony. Thankfully, shared rooms are no longer in existence within disability services as far as I’m aware, but shared bathrooms definitely are.

7. The weighted blanket the care facility paid for me to sleep under. I mean, seriously, if I were to transfer to a different care agency, I’d lose that too.

8. The Internet access. Pretty much unrestricted, mind you. At least, I haven’t run into any sites that are blocked by the care facility’s WiFi. At least social media and games are allowed. I’m not particularly interested in anything adult content, so haven’t checked that. I can also use the Internet whenever I please, including at 3AM should I so desire (which I occasionally do). I am pretty sure some other care homes would be more restrictive about this.

Overall, looking over this list, I think that, while things aren’t perfect, my care home is pretty good. Actually, I am quite sure it’s pretty much the best I can get.

loopyloulaura