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?

Historical Events

Today, in the journaling app Day One, the daily prompt was to write about the historical events you remember. I used to be a big news and politics junkie as an older child and teen, so I remember quite a few events.

I was born in 1986, so technically might’ve remembered the fall of the Berlin wall in 1989, but I didn’t. In fact, the first important historical event I remember was the Gulf War of 1991. At the time, I listened to the radio and heard about it, but erroneously thought that Iran, Iraq and Kuwait made up Ukraine. I don’t know what news event there was about Ukraine at the time, possibly the fifth anniversary of the Chernobyl nuclear disaster.

When I was nearly eight, I remember my parents taking me to the polling station for the national election in 1994. I remember both of the names of the candidates my parents voted for. I also clearly remember learning about the “purple” government, which meant that the Labor Party and the conservative party VVD were for the first time forming a coalition. Another party, D66, was joining them too and I asked what color they were and why that party’s color wasn’t represented in the mix. My parents explained that mixing too many party colors would make brown and that’d be a Nazi color.

When I became a teen, I got involved even more into politics. I obviously remember 9/11 when I was fifteen and the murder of Pim Fortuyn eight months later. That year’s election, nine days after Fortuyn was killed, was the most memorable election of my life. I remember kind of aggressively persuading my father to vote for the Socialist Party rather than GroenLinks, the leftist party he normally votes for.

During the fall of 2002, I myself joined the Socialist Party. I was a semi-active member in my local affiliate for a while. Still, I gradually lost my interest in politics and important news events. I left the political party in September of 2007, half because I didn’t like its rather undemocratic treatment of its members and half because I was tired of politics.

Since then, I haven’t really been following the news or politics much at all. I do find it intriguing to be a witness to the coronavirus crisis even though I’d rather have gone on like old normal.

As a teen, I wasn’t affected by the impact of important historical events. Like, I always wanted the stock prices on the AEX to be low for some reason I still don’t comprehend. Now, I understand the impact of economic crises more than I did before and it scares me. That’s why I’d rather put my head in the sand and not watch the news.

What historical events do you remember most?

Final Exams

Today, this year’s high schoolers should have heard whether they passed or failed their final exams for graduation. This inspired me to use one of Mama Kat’s writing prompts for this week, which is to write a post on the word “final”.

It’s been sixteen years since I graduated from high school. At the time, mobile phones were already in use, but they weren’t as popular as they are now and smartphones didn’t exist. Nonetheless, we were instructed not to text each other that we’d passed. After all, those who had failed would be called first and then those who had passed their exams would be called in alphabetical order. Texting each other would ruin the surprise effect. All of us would receive a call between 12:00 and 1:00PM. Since my last name starts with a W, I knew that I’d either be called at five past twelve if I’d failed, or at close to one o’clock if I’d passed.

Even though I had gotten pretty good grades on my school-based tests, which would make up half of my final grade, I had no idea how I’d done on the final exams. You could check your answers with a grading sheet available online once the exams were over. I didn’t do this with most subjects, I think. I did it with English though.

I at the time had an 8.1 out of 10 GPA in English. An 8.5 would be a nine. Though six is enough to pass, I badly wanted the nine. This meant I’d have to have an 8.9 on my final exam. When I checked, I found out that, most likely, I would not reach this. It however also depended on how strictly they were grading. After all, if most students scored lower than expected, they’d use a less strict grading system. If the grading folk were less strict than expected, I could get my desired 8.9.

Once the day we would be called arrived, I sat by my home phone from 11:30 until I was being called. I got called shortly before one o’clock: passed!

We were expected to be at school that afternoon to look at our grades. I had a surprisingly high grade on my geography final. That one had been adapted by my teacher and I’d taken it orally due to my blindness making the regular final inaccessible. As it turned out, the independent review teacher who had sat in on my final too, had been so incredibly impressed with my (quite mediocre) performance that he’d upped my grade. This made me feel guilty, but thankfully none of my fellow students knew.

As for English: the grading folk weren’t so kind this time. I passed with an 8.8, so got an eight out of ten GPA in English.

I, in fact, only got sevens and eights in all subjects, seven eights and eight sevens. This just about meant I wouldn’t be able to get accepted into selection-based college programs. Then again, I wasn’t intending on studying medicine or the like. In fact, now I’m more than grateful that I don’t need my high school diploma for anything anymore. I don’t even know where it is, nor do I care.

Mama’s Losin’ It

The Shifting Image of My Care

In September of 2006, when I was still blogging on DiaryLand, I wrote an entry about seeing my life in black and white. I meant not just my life in general, but my care needs in particular. I wrote said post in response to a meeting I’d had with a psychologist several weeks earlier because my behavior at the training home I lived in at the time was spiraling out of control. The psychologist asked me where I saw myself in three years’ time, referring to care needs.

In my response on my blog, I said that I constantly had two images in my mind about what my life would be like, one positive and one negative. These were represented by the two most important alter personalities I had at the time, Carol and Jane.

Jane was fiercely independent. She wanted to live completely on her own without any support, except for maybe a weekly visit from a person to read her mail and the occasional help with deep cleaning.

Carol, on the other hand, saw herself as needing more support. I, at the time, made a point of clarifying that my “negative” image didn’t mean I needed 24-hour care, but that I needed significant help beyond that considered “normal” for someone who’s just blind.

Six months later, I had already discovered that the positive image wasn’t going to come true, yet I shifted my two images. I started to believe that the “good” outcome would be the situation I would live in at my student apartment, which included sixteen hours of support a week. The “bad” image, then, became needing 24-hour care.

You all probably know that the “bad” image eventually came to be true. When I wrote about the 2006 post on my original WordPress blog in 2009, I said that the situation couldn’t get much worse than it had been already at the locked unit. If another three years later, it was worse, I reckoned that’d mean I was in prison or a homeless shelter and hence wouldn’t have access to the Internet.

It didn’t get worse, of course, right? Or did it? I mean, I lived with my husband for some years, but eventually got admitted into long-term care. I now have one-on-one support most of the day. And yet the images are still there.

Jane is still saying I should live independently. Not with my husband, mind you, but fully on my own. Then at least I can’t manipulate people into giving me more and more care and, by extension, cannot drive people away.

There’s another image haunting me. This image wasn’t in my mind back in 2006, or at least I wasn’t aware of it. It is the image of a girl, aged around sixteen, who was a patient in a psychiatric hospital in the late 1990s, where she had been restrained for weeks on end until her parents sought media attention. This is the true worst-case scenario I see in my mind now. But the worst part isn’t the restraints: it’s the fact that the girl was often left completely alone.

I had a few incidents of physical aggression towards staff recently. The staff keep reminding me that they realize that I don’t mean to be aggressive and that they won’t leave me if I am. I hope the worst-image alter, whom I call Rachelle, won’t prove them wrong.

I Am a Rock #SoCS

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “roc”. I didn’t know that even is a word, but we can use words with “roc” in them too. I was immediately reminded of “rock” and then of the Simon & Garfunkel song “I Am a Rock”. As I assume most of you will know, it goes like: “I am a rock, I am an island. And a rock feels no pain, and an island never cries.”

This reminded me of the fact that, at around age thirteen, I would describe my class as a country with lots of states and one of them, me, would be an island. Think Hawaii. This, of course, symbolized the fact that I felt like an outsider or even an outcast in my class.

One day, I showed a girl in my class the piece about the island. This girl promptly decided to type on my laptop and let my text-to-speech read: “Astrid is my friend.” She probably felt pity for me, as the friendship never lasted. It was rather based on rules, as was my entire class’s associating with me.

Like, before I found my way around the school by myself, classmates had to sighted guide me around. There was an entire schedule which had the girls be sighted guide and the boys carry my backpack, until I decided, with a little nudging, that I could carry my own backpack. I mean, yes, it was heavy with my laptop and all, but so is every early secondary schooler’s backpack. From then on, the boys would sighted guide me too.

This meant I had to sit with them during recess. After the island story incident with my “friend”, she and her clique allowed me to sit with them everyday during recess even if it wasn’t their turn to be sighted guide.

At the beginning of my second year at this school, I decided I’d had it with sighted guides and especially with the schedule. I tried to find my way by myself, often struggling, but this was better than to have people assigned to me who didn’t want to associate with me. Quickly, that became the entire class, including my “friends”.

I am a rock. I am an island. And a rock feels no pain. Literally. By the end of my second year in this school, I had mastered the coping mechanism of detaching from my surroundings and myself. I felt like I lived in a movie. I still feel that way at times, even though I have no need (I hope) to escape my current life.

A Very Intense Day Today

Today was an intense day. I started it with a weigh-in. To my surprise, I had lost almost 2kg. Last week, I had gained 1kg compared to the week before, so I had decided to try to cut back on snacks. That lasted all of one day and then I was back to snacking as usual. I don’t really trust my scale, as it isn’t officially calibrated, but well, who cares? I feel pretty fit and healthy and at least remain within the same 2kg range.

At 11:30AM, I had a nurse practitioner’s appt. My new’ish assigned home staff attended it with me rather than my assigned day activities staff, who usually does. Yesterday, this staff had been my one-on-one too and we had discussed my frequent dissociation and switching. She asked me whether I wanted to talk about it to my nurse practitioner and at first I said yes. Then later in the evening, I got anxious and decided to E-mail my nurse practitioner. I explained about the frequent switching and flashbacks. I also expressed my concern that, if the alters take over too much, my team will resort to denying their reality and ultimately to denying my reality as a whole. Then I will have lost all the trust I’ve gained in my team so far.

I can’t remember the entire appt, but at one point, Jane popped forward. She is the one most in denial of my trauma-related symptoms and yet it seems like she’s always the first to pop out and reveal our being multiple to a professional. My staff had probably already met her, and I think so has my nurse practitioner, but not to this extent. Thankfully, neither one objected to her being openly out.

I started feeling depersonalized after Jane was back inside and it didn’t fully clear up till just about an hour ago. In the evening, it got particularly bad.

Then for whatever reason, Karin, one of our fourteen-year-olds, popped out and started talking about a high school memory. We were still partly in the here and now, as she apparently recognized our one-on-one. Thankfully, our one-on-one reassured Karin that she’s now safe and the memories are in the past. She also told us that our teachers and parents, while probably meaning well, didn’t really help us and that none of our issues is our fault. That still feels rather off. I mean, of course I didn’t choose to be blind, but my parents reminded me over and over again that my behavior was definitely a choice. They always saw (and maybe still see) me as one giant manipulator, not an autistic, multiply-disabled trauma survivor. And they’re not the only ones. If I’ve learned one thing in my nearly 35 years of existence, it’s that sooner or later, people will always come to the conclusion that I’m one giant manipulator.

Recovering From Autistic Burnout

Today, the prompt for Reena’s Exploration Challenge is one word: burnout. This word evokes so many thoughts, feelings and memories in me! After all, though I was never diagnosed as suffering with actual burnout, the reason is more that burnout isn’t a DSM-IV or DSM-5 diagnosis than my not having suffered it.

That is, I did indeed not suffer the classic shutdown-type burnout where people are too exhausted to function. Rather, my burnout was more of the meltdown type, where I got so irritable and dysregulated that I couldn’t function anymore.

In 2007, I suffered autistic burnout. This is an actual thing and is more and more recognized by autism professionals too. It involves an inability to function in daily life as a whole, not just work, due to the experience of being overloaded, being autistic in a neurotypical society.

I have shared my experience of landing in a mental crisis in 2007 many times before. I was at the time living independently (though with a lot of community support) and going to university. That all changed within a matter of days: on Tuesday, I was sitting an exam, while the following Saturday, I was a patient on the locked unit of a psychiatric hospital. First, while there, I had to stabilize. I had to get back into a normal sleep/wake rhythm and regain my will to live.

Once I was no longer nonfunctioning and suicidal, however, I had to get my life back on track. My social worker thought I could go into supported housing for autistic people. I, at first, thought so too. Until I saw all the criteria relating to independence, lack of challenging behavior, trainability, etc. That wasn’t going to work out.

To be quite fair, I never fully understood my actual level of functioning until sometime in 2020. I had wanted to prove myself for so long. I had worn so many masks that hid the real, messy truth of who I am. Consequently, I constantly overestimated myself and my abilities. So did the people around me. Until one day, in November of last year, I crashed again. I probably suffered another burnout. That was when my one-on-one support was started.

There still are voices in my head telling me I could, should in fact go back to my life of before my first burnout in 2007. Back to independent living and college. Otherwise, how can I claim recovery?

The thing is, people who experience work-related burnout, usually don’t go back to their exact jobs from before their burnout either, if to the same job at all. Why should I then go back to a life I hated from the get-go? I try to see recovery from burnout not in terms of recovering lost functioning, but in recovering lost pieces of myself.

Basic Mistrust

I have been compelled to read up on emotional and psychosocial development. One theory is Erik Erikson’s theory, which states that, at each different stage in life (from infancy to old age), a particular conflict is present. In infancy and early toddlerhood, this conflict is basic trust vs. mistrust.

I initially thought that this stage corresponds pretty much to the first adaptation phase in attachment theory, which takes place between birth and age six months. When I checked it though, it includes this stage as well as the first socialization phase, age six to eighteen months. This may be one reason why I relate strongly to basic mistrust even though, in attachment theory terms, I function in most areas consistent with the first socialization phase.

One thing I’m facing lately is a chronic feeling of anxiety and distrust. In my care plan, my emotional development is outlined and in the fear domain, I am said to function at an age comparable to somewhere between zero and eighteen months. This includes all of Erikson’s first stage of psychosocial development. By contrast, it encompasses both the first adaptation and first socialization phase of attachment development. The reason my development in this area isn’t pinpointed to either of these two phases, is that I experience both basic fear (consistent with the first adaptation phase) and strong separation anxiety (consistent with the first socialization phase). Apparently, a baby under six months cannot yet express separation anxiety.

I have little idea why I might experience such strong anxiety, as in, what in my early development contributed to it. I mean, my parents claim I didn’t have these issues until I started to lose my eyesight at age seven. Seven is another important age in both cognitive and psychosocial development, but I don’t think that one is particularly important in my life. The earlier stages seem to make far more sense to me.

Of course, I do know that I probably didn’t have optimal care in my early life. This isn’t anyone’s fault. I was, after all, born prematurely and spent the first three months of my life in hospital. Though my parents visited me often, I don’t think I could rely upon them for meeting my every basic need. After all, they cannot possibly have been in my proximity 24/7, like the mother of a typically-developing child usually is at least for the first few weeks to months. My nurses must’ve provided me feeding and comfort at least part of the time.

As for affection, I have absolutely no idea. NICU nurses aren’t likely to be able to provide any significant level of affection to a baby at all, but I guess my parents would’ve made up for that. I went into this when discussing mother as source and mother as place of attachment. The truth is, I honestly mostly rely on my current feelings to guide my ideas. I, after all, don’t have many early memories of affection. My first memory related to it is from age four or five and it involves my mother using a nickname for me that referred to her needing to be at my side all the time. Then again, most people don’t have many early memories at all and remembering is still a form of reconstruction. In other words, because I experience a lot of basic mistrust now as an adult, it is easier for me to remember the memories that point to this.

This post was inspired by Fandango’s one-word challenge (#FOWC), the word for today being “Basic”.

Good Enough

Today’s optional prompt word for #LifeThisWeek is “Good”. Denyse takes on a cynical approach to the word, which reminds me of the many degrees of being called “good” I experienced.

In my elementary school years, my parents were in a constant fight with the schools for the blind I attended about my educational needs and my potential. According to the school, I was a good enough student. That’s the literal translation of the words that appeared on my report card often. Sometimes, when I was better than average, just “Good” appeared.
My parents thought I ought to get some more recognition. They thought I was excellent, sublime, a genius.

My schools thought I should be going to their secondary school program, which at the highest level catered to average students. My parents believed I could do far better.

I doubt, to be very honest, that my teachers truly didn’t see that academically, I was above-average. At least some of my teachers must have seen this. However, socially and emotionally, I was significantly behind. This was probably the real reason my schools recommended I continue in special education. My parents disagreed. They felt that I would be overprotected and underestimated in special ed. They might’ve been right. We’ll never know, since my parents took me from educational psychologist to educational psychologist until they had the recommendation for mainstream high level secondary education in their hands.

What I do know, is that I ended up being overestimated and underprotected. My parents would love to deny this and blame the staff in independence training for essentially setting me up for long-term care. Agree to disagree. Then again, we’ll never know, because I didn’t go into independent living and on to university right out of high school.

Sometimes, I wish I was just the average, good enough student that some of my teachers saw me as. Then at least I wouldn’t have to face the enormous challenge of both a high IQ and an emotional level comparable in many ways to an 18-month-old child. Then, I might not be writing blog posts in English, but I also might not need 24-hour care.

Then again, I enjoy writing blog posts. I like my care facility. Life is good enough for me.

An F in Phys Ed

One of Mama Kat’s writing prompts for this week is whether you played sports as a child and if so, to share a memorable game. I never played sports outside of school. That is, I attended one gymnastics class with my sister and a friend of hers at around age eight. I didn’t enjoy it one bit, despite normally liking gymnastics in physical education classes.

I was, to put it plainly, horrible at sports. Any sports. While gymnastics was my favorite part of physical education, it was more because I hated team sports and athletics even more.

At the school for the blind I attended for grades four to six, I was always picked last. Not just because of my lack of athletic capacity, but also because I was the only girl in my class. I don’t blame my classmates though.

When I attended mainstream high school, my phys ed teacher was also my tutor. He was great at accommodating me up to a point. For example, he let me run with a buddy. Of course, I was the slowest runner of the entire class. Looking back, I like to blame my mild cerebral palsy, but I still struggle to figure out what is due to that and what is simply due to my being fat. Not that I was fat at the time, but I wasn’t skinny either.

In my second year in this school, I hadn’t had any failing grades until sometime in February. My classmates complained that I got it easier than them, because for example I’d get extra time on tests. Whether this motivated my phys ed teacher or not, I’ll never know. We had to do gymnastics, a particular swing on the rings. I couldn’t really see what everyone else did, but I tried my best. And failed. My teacher explained to my father that I might’ve done the best I could, but he couldn’t possibly justify giving me a passing grade.

Like I said, he was my tutor. He almost took pride in being the first to give me a failing grade that year. Except that he wasn’t. That same week, I’d gotten an F in Greek too. That one was definitely justified, as at the time I didn’t face any barriers to learning basic Greek that my classmates didn’t.

From the next year on, I started going to a gym instead of following regular PE classes. I, after all, would never be able to attain the level of physical ability required for higher secondary school sports. I continued to attend the gym regularly throughout high school and for the first several years after.

Mama’s Losin’ It