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.

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

Sunday Ramble: Technology and the Future

Hi all. I’m feeling kind of off today. I’m not sure it’s all in my head or I’m suffering with the early symptoms of a mild case of COVID. I haven’t had another lateral flow test, as I don’t feel worse than I did yesterday – in fact, I feel slightly better. On Tuesday, I’ll have a PCR test, so unless I develop really telling symptoms, none of which I have so far, I’ll wait and see until then.

Anyway, for my blog post today, I’m answering E.M.’s Sunday Ramble questions. Her topic for this week is technology and the future. Here are her questions.

1. Are there any applications on your mobile device, tablets, etc. that you cannot live without? Feel free to ramble about them! Maybe we will learn new apps that will become important in our own lives.
I am going with the more unusual apps here, as I doubt I’ll be inspiring anyone else to download Facebook or a web browser (I use Edge even on my iPhone, by the way) if they haven’t already. Apps I truly love on my iPhone include the diary app Day One. I previously reviewed Diarium, another diary app, but have since gone back to using Day One mostly because it allows me to have multiple diaries.

Other apps include MyNoise, an app that allows users to select soundscapes, the task management app Microsoft To Do and Seeing AI, an app that describes images. It most recently guessed my age in a photo to be 44 though. 😒 Admittedly, I pulled a rather odd face in a forced attempt to smile. And just so you know, no, I’m not going to post the photo here. 🙂

2. Do you prefer Apple or Android?
Apple for sure! It is far more advanced with respect to accessibility for the blind.

3. Windows OS or MacOS?
Windows. I tried a Mac some years ago, thinking it’d be easy to use with my being an iPhone user already, but I couldn’t get used to it. The only advantage of MacOS is that it comes with a built-in screen reader, like iOS. For Windows, you have to buy (or get insurance to pay for) JAWS.

4. What do you wish that you would have placed in a time capsule 15+ years ago to have access to now?
I answered a similar question already on another blog a few weeks back: I’d bring back the disability-related story-sharing websites we had in the early 2000s, like Tell-Us-Your-Story.com. I also would’ve put Diaryland’s diaryrings into the time capsule, but then I’d have hacked the concept and applied it to today’s blogs. Webrings are cool! I think the concept still exists, but hardly anyone participates nowadays.

5. When you think of the what the world will look like 50 years from now, what does that future look like through your eyes? Go as sci-fi and/or fantasy as you would like and ramble on however you wish to ramble When you think of the what the world will look like 50 years from now, what does that future look like through your eyes? Go as sci-fi and/or fantasy as you would like and ramble on however you wish to ramble.
I have absolutely no idea. I did a post on this topic some six years ago on my old blog, but I mostly focused on what my life would be like when I was in my late seventies. I really hope that image description and the like will be very much improved, so that the blind will be able to “see” this way. There already are glasses, such as the Orcam or Envision Glasses, which will describe things a person is looking at. I haven’t tried those, but if they evolve more, and they likely will, I’d love to try those someday.

What do you wish you could’ve put into a time capsule to take with you from 15+ years ago?

Activities I Do When I’m Alone

I have been struggling more with alone time and the fear of being left to my own resources lately. For this reason, Carol Anne of Therapy Bits’ question yesterday comes at the right time. She asks what things we like to do when we’re alone.
Here’s a list of things I can do by myself.

1. Go online. I can read other people’s blog posts, be it in my feed reader or through link parties.

I can also go on Facebook and other social media. I don’t personally use Twitter, Instagram etc. much at this point, but I still like to scroll through it.

I also recently developed an interest in watching YouTube videos in the areas of crafting and faith.

2. Read. The only goal I set for myself this year that I truly, definitely haven’t reached, is my reading goal. I’ve so far only finished six books out of my goal of 20. That being said, I do like to read the occasional short story or chapter in a self-help book.

3. Write. I am currently on an eight-day streak with this blog (including this post). I can also write in my private diary, for which I use an app called Day One. I use this app for freewrites and gratitude lists too.

4. Pray and read my Bible. I sometimes slack out on my Bible reading a little, opening the app and only reading the verse of the dday. Today, I did pretty well, having actually finished a plan I had been doing for a while and also having read up some in the book of Judges (because someone I follow mentioned a verse from there).

Besides filling my time, Bible study and prayer will bring me closer to God and will hopefully make me realize that I am never truly alone, even when I am physically alone. I am also never left to my own resources, even if it feels that way.

5. Listen to music and dance. The word “dance” should really be put between scare quotes, since my sense of rhythm is nonexistent. However, I enjoy listening to country, southern rock and contemporary Christian music while moving.

In addition, I also like to listen to calming music while lying in bed. Then, I prefer nature sounds and harp, guitar or piano music. I also occasionally listen to contemporary Christian music when I’m neither resting nor dancing. Then, I’m digesting the lyrics.

Do you struggle with alone time? What activities do you do when you’re alone?

Keep Calm and Carry On Linking Sunday

Early Days Online

Yesterday, Rory asked whether we remember our first times online or with a computer in general. I certainly do. I may have shared some of these memories before, but just in case I haven’t, I’m going to dedicate a post to them.

I got my first computer at the age of eleven in January of 1998. That one didn’t have an Internet connection though. Its operating system, Windows 95 SP2 (which my father explained was like Windows 96), did support Internet Explorer, but my screen reader didn’t. That screen reader, Slimware Windows Bridge, was quite primitive. So was the Braille display, which I remember to be attached to my computer via the printer port. Though it did work with just Braille, without speech, if the speech unit in the Braille display malfunctioned, so did the entire thing.

In 2002, I got my second computer and my first JAWS version. For those who don’t know, JAWS is the most commonly-used screen reader today. This computer had Windows 98 installed on it and it did have Internet access.

My father at first was adamant that I use the Internet as much as I want, even though we had a dial-up connection back then (not the kind where you can’t phone and go online at the same time). He said that, if the bill got too expensive, we’d get broadband. Then when the bill did get to over €300 over the summer, it turned out broadband wasn’t available at our house. After a few months of my parents trying to restrict my Internet access and my trying to evade said restrictions, we eventually got cable.

I got my first online diary that fall of 2002. It was on DiaryLand if I remember correctly, though I often switched between DiaryLand, Diary-X, Teen Open Diary and whatever else was available. The only service I never actively used, was Xanga. I also had a Dutch online diary.

The worst mistake I made, looking back, was not taking care of other people’s privacy. I not only wrote out every argument I’d had with my parents in detail, but also referred to other people, such as my teachers, by their real names. One teacher in particular had a rather unusual last name and at one point was googling her name for genealogy purposes. Not surprisingly, she stumbled upon my Dutch diary. Though I (interestingly) had used a nickname there, she quickly found out it was me. She personally didn’t mind, but did caution me that others might.

What mistakes did you make in your early days online?

Reflecting on My Life: 2003

Last night, I couldn’t sleep. I was looking for some link-up parties to join in and came across the Life This Week linky. In this week’s edition, host Denyse shares her memories of the year 2003. As this is my first time participating in the linky, I should really start my story from the beginning on, but for some reason, I can’t.

I may have shared this before, but in secondary school, I always had this superstition that life ran in circles. There’d be a year of struggle and crisis, a year of renewed hope and finally a year of disillusionment, after which I’d spiral back to struggle and crisis. The year 2003 was a year of disillusionment.

In 2003, I was sixteen. I turned seventeen at the end of June. I was in the tenth grade for the first half of the year and in the eleventh for the last half.

In the summer of 2002, I had barely moved up a year. My grades weren’t that good and I only moved up because I worked very hard the last few weeks of the year. I had been struggling with feeling like an outcast due to my blindness the entire 2001/2002 school year. That was to change by late 2002, or so I believed. My high school tutor promised me he’d help me feel better.

What he did was come up with a social skills assessment for blind students and have the teachers fill it out. That was no good for my self-esteem, as I showed considerable weaknesses. No-one knew at the time that I was also autistic, even though I suspected it.

The year 2003 was the year I started to learn about myself from a possibly autistic point of view. Even though I had started suspecting I was on the spectrum in mid-2002, I didn’t feel comfortable joining online support groups for it till 2003.

This was also the year I expanded my horizons where it came to using the Internet in general. I had gotten an Internet connection in May of 2002. By April of 2003, I started keeping an online diary on DiaryLand, which several years later morphed into my first WordPress blog.

In the summer of 2003, I attended the International Computer Camp for blind students in Switzerland. I had attended it the year before, when it was held in England, too. This year, I felt a bit disappointed in the end, because it didn’t provide me with the cathartic experience I’d felt the year before.

In 2003, I also explored fictional storytelling as a way of expressing myself. I was experiencing some significant selective mutism at the time, which I could circumvent by pretending I wasn’t talking about myself. This is how my “mirror image”, Kirsten, came to be. She is one of my main alters to this day.

Finally, this was the year I was first starting to explore future planning. Here in the Netherlands, students with disabilities attending mainstream education didn’t get any type of special transition planning at the time. I was expected to just get by and go to university straight out of high school in 2005. In 2003, I started to doubt this would be a success, but I didn’t voice my doubts yet. As it is, I didn’t actually make it clear that I wasn’t going to university right out of high school until April of 2005.

Where were you on the path of life in 2003?

Gratitude List (March 20, 2020) #TToT

It’s Friday and that means the Ten Things of Thankful (#TToT) linkup is open again. I haven’t participated in a while, but in these weird times, we need gratitude more than ever. Here are the things I’ve been thankful for lately.

1. Relatively tasty dinners. Here at the care facility, we get our dinners from a meal delivery company. Last week or the week before, I complained that we got boiled potatoes like four times a week and that I’d like rice, pasta or the like more often. Thankfully they customize the meals for each resident, so it’s not like if I want pasta, everyone gets pasta. I think my assigned staff told the company. In any case, I’ve had pretty varied meals lately. On Saturday, we got tuna macaroni and I loved it!

2. The sensory room. The real one at the day center and the makeshift one at the home. The day center was still open on Monday and Tuesday, so I was able to use the snoezelen® room then. On Thursday, some of the staff created a makeshift sensory room in the currently empty bedroom at our home.

3. Walking. Yay, we’re not in complete lockdown (yet)! I’ve been grateful for walks often before, but in these weird times, I get to appreciate it even more. I managed to get over 9000 steps everyday this week so far except for today (and I’m not going to make it today either).

4. Getting day activities at the home. I was a little scared that, once the day center closed, we’d get no activities at all. Thankfully, that’s not true. I brought some games from the day center to the home with me and we have enough staff to do activities with us.

5. Going on the elliptical. I went on Tuesday, thinking I wouldn’t be able to use it for three weeks after that. However, two staff members transferred the elliptical to the empty room in our home, so that it’s now a combined sensory and gym room. I went on it for like 20 minutes yesterday.

6. Modern technology. I’m so glad this pandemic is happening now that we have the Internet and smartphones and the like. Otherwise I wouldn’t be able to connect to my husband, my family or the wider community at all. I’m so happy this thing does connect us all in a weird kind of way.

7. Meditation. I use an app called Insight Timer on my phone for meditating, but I hadn’t used it in a while. Then I checked it out and saw they have a whole section devoted to overcoming fear in these weird times. I loved listening to some guided meditations.

8. A phone appt with my CPN from mental health. We had a pretty good session. We actually did get started on some cognitive behavior therapy like we were planning on. She’s also going to get me signed up for the eHealth module with the agency.

9. My husband. Yesterday I was suddenly overcome with fear that I’d never see my husband again or that he’d want to divorce me due to our inability to be together in this crisis. My husband reassured me that I won’t lose him. He’s so lovely!

10. My health. I almost forgot that this thing is about a viral disease that takes actual lives. I so far haven’t had symptoms of COVID-19, but I’m confident that when (yes, it’s most likely a “when”) I do get the disease, I’ll survive.

What have you been grateful for lately?

A Month Without a Laptop

I am writing this post on my new computer. I love it. Definitely a PC is much more user-friendly than a Mac if you are not too tech-savvy. My mother-in-law would say the opposite, but oh well. I’m just glad I got to sell her my Macbook.

Today, when I read on another blog about someone having to do without a laptop for a few days, I was reminded of the month I spent without a computer. Of course, people older than me will remember the years they spent without a computer and, in fact, I didn’t get my first computer till I was eleven and didn’t have access to the Internet till nearly sixteen. I quickly became addicted though, so when my laptop broke down in 2009, I was lost.

I had at the time just transferred from the locked psych unit to the open resocialization unit. The locked unit didn’t have a patient computer. This got me to consider getting a wireless cellphone-like modem for my laptop. However, at the time, I was too scared of getting Alzheimer’s from electromagnetic radiation. This meant that, in the early months of my hospitalization, before I was allowed on leave, I didn’t have access to the Internet. I had a computer though.

The resocialization unit did have a patient computer that was connected to the Internet. It didn’t have a screen reader on it, of course, but I just removed the network cable from the computer and plugged it into my laptop. And then one day my laptop crashed. This was, obviously, before accessible smartphones. In fact, though I had a phone that could connect to the Internet, I could only use it to make phone calls.

I was frustrated, but not as frustrated as I’d be now if I lost access to the Internet. For an entire month, I typed up my diary in Braille and listened to audio books and magazines on my digital talking book player. I do still have my Braille typerwriter and my digital talking book player, but both are pretty much useless.

Since having no computer for an entire month, I usually make sure I have at least two devices that connect to the Internet. Currently these are my PC and my iPhone. My old PC could probably be revived if need be too.

I also did finally get myself a wireless modem. I just threw it away yesterday, as I’ve not paid f or the data that goes with it in years.

I guess I could technically (no pun intended) deal without going online for a while now. However, I am always very happy to discover that a potential new living faciltiy has WiFi. I guess some people take this for granted, but the psych hospital didn’t have WiFi till 2015 and even then it was very limited.