I Would Never (Or So I Thought): My Changing Perspective on My Care Needs #31Days2022

Hi everyone. Today’s optional prompt for #31Days2022 is “never”. I am immediately reminded of my shifting perspectives on my care needs over the 17+ years that I’ve been in the care system. Some things I thought I’d never accept, let alone want, in my care, are now things I wish for.

Most notably, in 2008, when I’d been in the psych hospital for about three months, I was being discussed among some autism know-it-alls. When asked what I wanted them to know before the meeting – since I wasn’t present at the meeting itself -, I wrote down that I wanted to be back in the community as much as possible as quickly as possible.

Out of the meeting came the recommendation that I be transferred to an autism treatment facility on psych institution grounds. I eventually ended up going to the orientation visit for the facility and the treatment coordinator and I mutually agreed it wouldn’t be the best place for me, precisely because of what it was: a treatment facility. I didn’t need further training in independence skills, after all, because, due to the combination of my disabilities, this wouldn’t be successful.

At first, I however misunderstood the meeting’s recommendations and thought they wanted me to go into the workhome, which is essentially a long-term living facility for autistics on the same institution grounds. And this is where I started to object in a way I wouldn’t now: I didn’t want to go live on institution grounds long-term.

For the first several years of my experience in the care system, I thought that institutionalization was an excuse for poor care. I am not saying it isn’t, because people who live in the community may need more support than those who live on sheltered institution grounds. In fact, when my current care facility was built in 2015, grouping several community-based care homes together, it was out of a need for budget cuts.

However, that wasn’t the reason I didn’t want to live on institution grounds. Indeed, the reason was the fact that I perceived myself as far more independent than I currently perceive myself. Not just that, but I had a misguided view of the amount of care I could receive.

You see, in 2007, I left an independence training home, where, during the week, the staff/client ratio was usually 2:7. Granted, there was no night shift, not even a sleeping one. I could deal with that at the time and, as a result, thought I could live in a community supported housing facility with staffing available even part of the day. Never mind that this usually meant a much lower staff/client ratio, so that within staffing hours, I would need to share my staff with a larger number of fellow residents.

I also rebelled against living on institution grounds because of my wish that more people could be integrated into society with the right support. Then again, I realized within the past several years that just because I and other people would wish for integration within society, doesn’t mean society wants us in it. For example, institution grounds are just much safer to walk on for people who aren’t safe in traffic, and that happens to include me. Just because I wish all drivers would stop their vehicles when they saw me, with or without my white cane, doesn’t mean they do. And it’s not like they can’t tell I’m disabled when I’m not using my white cane.

Also in 2008 or maybe it was 2009, I saw this documentary about a care agency in the southwest of the Netherlands which had completely done away with institution grounds in 1997, even for the most severely disabled clients. The presenter started out by saying that half (I think) of the clients in another province wanted to go back into institutions. The southwestern agency’s director started talking highly of his agency’s approach, where for instance they call their support workers “personal assistants” and where he at first claimed all clients are successfully integrated within the community. The presenter started showing examples of clients who were drowning, figuratively speaking, in the community. The bottom line of the documentary was that the director made up his mind and invited the presenter to come back a year later to hear his revised approach. I am pretty sure I wouldn’t believe the presenter, saying the clients had obviously not received the right amount of support. But if you need a “personal assistant” by your side all the time in the community while you can roam institution grounds freely by yourself, living in the community isn’t necessarily the obvious choice.

The Wednesday HodgePodge (September 21, 2022)

Hi everyone. I haven’t blogged in several days. A lot is still on my mind, but I’m too all over the place to write it all down in a coherent way. Don’t worry, I’ll get to it, eventually. For right now, I’m joining in with the Wednesday HodgePodge. Here goes.

1. Volume 478. Sounds like a lot. Where were you in 1978? If you weren’t born where were you in 2008?
In 1978, my parents got married. I wasn’t born yet. As for 2008, I spent the entire year on the locked acute psychiatric unit. I got there in November of 2007 and left for the resocialization unit in March of 2009. This year was also the year I started officially dating Jeroen, whom I married in 2011.

2. Raise your hand if you remember records playing at a speed of 78 rpm? What’s a topic that when it comes up you “sound like a broken record”?
No, I don’t think I remember that. As for the second part of the question, anything that causes me stress or worry can get me talking like a broken record.

3. What’s the last thing you recorded in some way?
I rarely if ever make audio recordings. In fact, I did one once in my private diary app Day One just to see if it’d work. Can’t remember when though. Joyce supposes many will reply with something they’ve added to their DVR, but I have no idea what that even is. So yeah, like her, I’m going with something I wrote down and it’s my worries about the prospective new care home. I E-mailed them to my assigned home staff Monday night.

4. Thursday is the first day of fall (in the northern hemisphere). How do you feel about the changing seasons? Something you’re looking forward to this fall?
Fall is my least favorite season, so I don’t really like this change of the seasons. However, I do look forward to hopefully being able to capture some photos of the amazing fall colors. I’ve heard the main institution that I may move to in two weeks is surrounded by beautiful nature.

5. In what way (or ways) are you like the apple that didn’t “fall far from the tree”?
My mother half-jokingly says that I got all my negative traits from her and all my positive traits from my father. Indeed, I do share my mother’s short temper, but I also share her creative talent. In many other ways, we differ. For one thing, she hates to depend on others (except for my father). For this reason, she can’t stand those in the helping professions, including doctors. This is somewhat worrisome now that she’s in her late sixties and her health is declining. However, she considers me an attention-seeker for accepting care.

6. Insert your own random thought here.
I’m so nervous! In less than an hour, I will be headed to the main institution to have my first orientation visit with the prospective new care home. I am really hoping it is as good as people say it is. Please all pray this works out for me.

Bat-Tea

In the psychiatric hospital, coffee was consumed more than any other drink, except for maybe alcohol by the dually-diagnosed. (No, that’s not true: even though I’ve seen my fair share of drunken patients, they probably still didn’t manage to drink on a daily basis.) We had set coffee times, but everyone knew the way to the coffee machine in the outpatient clinic’s waiting room; actually, a nurse showed me.

Even so, when we were unstable, we drank tea, specifically rooibos with strawberry and whipped cream flavor. I don’t understand how any of us liked it, but we did. I nicknamed it bat-tea, for it helped us when we were going batty.


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

Riding the Train

Back when I still lived on my own in 2007, I would frequently ride the train. Or go to the train station planning to go on a train somewhere but melt down once at the platform. Then, people would often call the police.

I shared my experiences of riding the train, or wanting to do so, as an autistic and blind person on a public transportation users forum in 2008. I shared pretty much every little detail up till my crisis on November 2, which happened at a train station too. The person who had asked me to share, then pointed out that it might be a little TMI, but that’s how I am.


This piece was written for the Six Sentence Story blog hop, for which the prompt this week is “Train”.

The Third Day of Christmas

I’ve seen a lot of people share their favorite holiday-themed memories. I’ve wanted to share mine, but also felt rather unmotivated to actually sit down and type. Today it’s Sunday and I came home to the care facility from spending the week-end with my husband earlier than usual. I guess it’s about time I share some Christmassy cheer.

My memory isn’t really about Christmas though. Or even boxing day. I know there isn’t such a thing as boxing day in the United States. Well, here in the Netherlands, what British folk call boxing day is called the second day of Christmas.

From there on, many people count the day after that, December 27, as the third day of Christmas. Some go on to count the fourth and fifth day of Christmas. I’ve never heard someone refer to December 30 as the sixth day of Christmas though, and the fourth and fifth days are rare too. But the third day of Christmas is pretty much a thing here.

I first met my now husband Jeroen six weeks before landing in the mental hospital. I was hospitalized in early November and still didn’t have independent off-ward privileges by Christmas, let alone that I could visit family.

Jeroen had family obligations over Christmas and boxing day, of course, but he was free on the third day of Christmas. That’s how came he visited me in the hospital that day, December 27, 2007. Please realize we weren’t officially in a relationship then. He probably knew that he wanted to be by this time, as he told me he loved me on January 7, but I definitely wasn’t yet sure and just saw him as a friend.

Now that I write, I realize I hardly even know what we did that third day of Christmas. He probably accompanied me to the nearby hospital cafeteria, where we had a cup of Earl Grey tea. Or maybe I had coffee. I’m pretty sure he had some kind of tea.

A year later, in 2008, we were officially in a relationship and he asked to meet me again on the third day of Christmas. Same ward still, as I spent an incredibly long time (sixteen months) on the acute ward. I had off-ward and even town privileges by this time, but I think we met again at the cafeteria. He said the third day of Christmas was our traditional day to meet from then on. I’m not sure whether we stuck to it much, but this year, inbetween the two days of Christmas and the week-end that follows, I’m also spending the third day of Christmas in our home.