Alarm Anxiety

Posted on by Astrid

I just came across an interesting concept when reading Pat’s Soapbox Thursday for today: alarm anxiety. Alarm anxiety is the fear of the alarm not going off or of not getting enough sleep before it does. When I read her description, immediately alarm bells (pun intended) went off in my head. This is what I dealt with throughout high school and into university.

When I was at secondary school, I’d compulsively check that my alarm was on. Since my alarm was at the other end of the room and I couldn’t visually check it due to being blind, I had to physically leave my bed to do so. And I’d do so at least thirty times a night. And worry that, by the time I’d finally fall asleep, if my alarm did go off, I’d still sleep through it because I hadn’t had enough sleep. This only happened once in my entire six years of secondary school.

I had other compulsions too, but these are too embarrassing to share here. In general, I’d spend hours engaging in my various rituals at night. I wouldn’t necessarily say I had OCD, as these obsessions and compulsions only affected me at night.

They got a lot worse when I lived independently and went to university. I had to check whether my front door was locked, all non-essential electronics unplugged, window open, heating off, alarm on and I’m pretty sure there’s something I’m forgetting right now. All of the things that needed to be checked, were for a reason, of course. For example, the heating needed to be off in case of a carbon monoxide leak (even though I didn’t have my own boiler) and the window needed to be open so that, if such a leak occurred, the chance of me getting poisoned would be lower.

I’d spend hours upon hours pacing through my apartment checking that these things were as I needed them to be. It was exhausting!

Thankfully, my compulsions left immediately when I was admitted to the psychiatric hospital. Either the fact that a staff member was on the ward at all times, comforted me, or the mere fact of my having been removed from my apartment and its specific triggers, caused me to be able to let go. And, of course, alarm anxiety was no longer a thing, as the staff would wake me. Besides, we weren’t required to be up by a certain time anyway.

My Life Story Isn’t Over Yet

Posted on by Astrid

Hi all. Today I’m joining Tranquil Thursday. This replaces Throwback Thursday while Lauren is dealing with her health issues. This week’s topic is (un)written aspects of our life story.

I am 36. On average, this means I’m about at midlife or slightly before there. This should mean about as much of my life story has been written already as the part that’s still unwritten. I struggle to see it this way though. In my mind, I’m perpetually in end-of-life mode.

Especially since moving to my current care home, I no longer make plans. I blame the chaotic situation here, but I’m not sure that’s all there is to it.

I do look back at a life that has been hard, but it definitely has had its positives. Meeting my husband and getting married is an absolutely amazing thing about my life.

As a teen and young adult, I always wanted to write and publish my autobiography. I obviously never did. It had as its working title “Some former preemies will go to university”, after the title of an article in the newspaper my parents read in 2004. The article was about giving preemies born at 24 weeks gestation a chance at active treatment. The neonatologist arguing for this said that some preemies will later go to university. In other words, they’ll prove their worthiness of having been treated actively.

As regular readers of this blog will know, I received active treatment as a preemie too, even though my parents weren’t completely sure I should. I did, indeed, at some point go to university. And failed miserably. But I did sort of prove my worth. Or did I?

My life story isn’t over yet. I might indeed someday be relatively successful at life, whatever that may be. Or I might deteriorate even further than I am now. Then again, everyone deteriorates in old age. And if you need to have had a college degree and worked for 40’ish years before that in order to prove your life is worth it, human values are rather distorted.

Advice I’d Give My Younger Self

Posted on by Astrid

In today’s Sunday Poser, Sadje asks what advice you’d give your younger self. Like in her case, for me it would be different depending on my age.

For example, I could have advised my twelve-year-old self not to be so loyal to her parents’wish to have her go to mainstream grammar school. However, rebellion in a young adolescent is rarely seen as a positive thing and even much less taken seriously. Preteens are expected to be loyal to their parents.

Besides, as someone who had hardly any social contact outside of the home, I didn’t know what was “normal” other than what I saw in the house – which in hindsight was far from normal.

For this reason, I am not really sure what advice to give my childhood self other than to savor the few friendships she did have.

To my teenage self, I would give the advice of standing up for herself more but in a kind way. Then again, this is basically the advice I’d give any younger version of myself and even present-day me, but I have little idea of how to go about actually doing it. I mean, I feel like I’m a doormat that can be walked over and a bed of nails at the same time.

I wish I could give myself the advice not to let others make decisions for me, but the two times I sort of made the decision to move somewhere on my own initiative, both went horribly wrong: my move to the psych hospital in Wolfheze in 2013 and my move to my current care home. For this reason, I’m still unsure I can trust my own decision-making. In truth, of course, I was misinformed in the latter case and not given enough time to process the decision in the former, so it’s not entirely my fault.

I guess, after all, there’s one piece of advice I’d give my younger self. It’d be for my nineteen-year-old self in April of 2006, when my parents threatened to abandon me because I was delaying going to university for another year in order to prolong my training home stay. The advice I’d give her is to let them have their way and not allow the training home coordinator to mediate. This, after all, led to the training home being pressured to require me to live completely independently and go to university after completing the program, something I never even wanted.

I know it’d take immense courage for me at that age to be disloyal to my parents, but had I been completely honest about my needs back in 2006, I would most likely not have ended up in my current care home now and wouldn’t even have needed as much care as I do now.

Unconsciously Incompetent #SoCS

Posted on by Astrid

When I was in college studying applied psychology (it was really an orientation year to Bachelor’s of social work or related fields), my tutor had an interesting theory about how we learn by first being unconsciously incompetent. Then we move on to being consciously incompetent, by which she meant we are aware of our lack of knowledge and skill. Then, after years of college, we move on to being consciously competent. Once being experienced in the workforce, we then become unconsciously competent, which means we no longer need to be aware of our competence, since it’s become muscle memory.

I reached the stage of conscious incompetence when my tutor told me flat out that she was passing me for communication skills only if I promised never to enter the field of social work, psychology or any related field of study or work again. Thankfully, I was aware that my communication skills exam had really gone badly just before she told me, so I didn’t just need to be dragged into conscious incompetence.

I think I might need a similar experience with macrame. I started practising on Thursday and, though I managed the square knot, spiral knot and lark’s head knot quite easily eventually, I am pretty sure I’m still unconsciously incompetent. In other words, my work is horribly ugly but I think it will do.

The only thing is, because I sort of know I might never reach the stage of even conscious competence, I am too scared to show my work online for judgment. After all, as much as I am self-conscious about it, I also would really like this to work out!

Similarly, though I knew before that horribly messed-up communication skills exam at least on some subconscious level that I’m not suited to become a social worker or psychologist, I wanted to be one. That’s probably why I went into linguistics, which, though it isn’t necessarily within the helping profession, is still a communicative field of study. I only went into it to have a student psychologist tell a newspaper that “a blind autistic who wants to study something communicative” is going to have a pretty hard time of it, when they were promoting their autism buddy program. That pretty much sent me into conscious incompetence as soon as I read it, which thankfully was six weeks into the academic year. I guess that’s what happened the time the first person to comment on my question about macrame told me it would be really hard too. Only that’s before I’d started. I’m not sure that’s conscious incompetence though. It looks rather like low self-esteem.

This post was written for Stream of Consciousness Saturday, with the prompt of a word containing “Comp”.

Friends and Buddies

Posted on by Astrid

This week’s topic for Throwback Thursday is friendship. I was never really good at making friends. I still don’t have any real friends other than my husband. I mean, of course I could consider some of my fellow clients “friends”, but our relationship isn’t as deep as that of normal adult friendships.

In early childhood, I did have one friend. Her name was Kim and we used to make mud castles together. Or anything out of sand and water really. Kim’s last name translates to “peat” and my father used to jokingly call her “Kim Mud” rather than “Kim Peat”.

When I went to the special school for the visually impaired at the age of five, I started in a first grade class despite being of Kindergarten age. All girls in my class were at least a year older than me and they enjoyed “babysitting” me. In exchange, for the next three years, I’d help them with their schoolwork.

By the age of nine, I transferred to a different school for the blind. Though I did have a friend there, I was also an outcast and got heavily bullied.

My best time socially was my one year at the special ed secondary school for the blind. I had one good friend there, but also got along pretty well with everyone else in my class and most kids in my school in general.

All that changed when I entered mainstream high school at the age of thirteen. Within a month, everyone had formed cliques except for me. A few months later, my favorite clique took me under their wing and pretended to be my friends, only to drop me again when they’d had enough of me. I was friendless for the remainder of the six-year program. I didn’t really care. Or maybe I did, but I was determined to show my parents and teachers that I could earn a mainstream high level high school diploma. And I did. Not that I use it for anything now, but oh well.

Another topic mentioned in the Throwback Thursday post title at least is buddies. This reminds me of the autistic student buddy program I was part of during my two months of attending university. This program assigned a psychology student volunteer buddy to an autistic student to help the autistic with planning their coursework or other activities related to their studies. It worked in theory, but the catch was that these buddies were volunteers helping only with certain things for one or two hours a week at most. At the time, you couldn’t get paid support workers for assistance related to college or university studies, as the reasoning was that if you could be a student in college or uni, you should be able to do the planning and related tasks yourself. Needless to say my buddy got overwhelmed within a week. I feel intensely sorry for her.

The reason I mention this, besides it being in the post title, is the fact that I realize I struggle to maintain a distinction between social and professional relationships and, with the buddy, things got even muddier. I mean, friendships are supposed to be reciprocal, while professional relationships are not. For this reason, I am allowed to unload my shit to a professional without needing to listen to theirs. Professionals, however, get paid, while friends don’t. With the buddy, the situation got complicated, in that my fellow students called on my buddy to calm me when I was in a meltdown. That clearly wasn’t her role.

This thing about lack of reciprocity, however, also probably killed off that mainstream high school friendship I pretended to have. I don’t blame myself entirely though: my so-called “friends” also felt obligated to hang out with me out of pity, and that’s never a good reason to be someone’s friend.

Lifelong Learning

Posted on by Astrid

I discovered 10 on the 10th last month, but didn’t feel like joining in at the time. Yesterday, a new edition went live and the topic is lifelong learning in honor of back-to-school season. I’m joining in today, as I loved the questions. Here goes.

1. How old were you when you started school? Did you attend pre-kinder and/or kinder or go straight into first grade?
I started in preschool at age three and in Kindergarten at age four. Here in the Netherlands, Kindergarten takes two years, although the first year (when children are four) wasn’t mandatory back in my day. It is now.

2. Were you a good student? What was your favorite subject?
In terms of academic performance, I was above-average in most subjects once I was properly educated. I added that last bit because, at my first special education school for the visually impaired, where I attended first till third grade, I was a little behind in reading and writing due to several factors. These included poor teaching and the fact that I didn’t start learning Braille till second grade, so had to pretty much start over learning to read and write then.

In terms of behavior, I did okay. I am autistic (undiagnosed at the time), so I did have my challenges, but I wasn’t the type to stir up trouble in school on purpose.

My favorite subject was math for most of elementary school and my first year in secondary school. Then, once I was mainstreamed at a high level high school and math became one of my hardest subjects, I started to like languages more. At the end of secondary school, my favorite subject was English.

3. As a child, did you take music lessons? Or play a sport? Do you still play an instrument now?
No, not at all! Contrary to the stereotype of blind people, I’m not musically-talented at all. Neither am I good at sports. I did attend a children’s choir for some years though, but mostly just hummed along.

4. Did you attend any kind of training or classes beyond high school? If so, what did you study? Did you wind up working in a profession or job for which those classes or training prepared you?
I went to college for one year to study applied psychology and to university for two months to study linguistics. I did get my foundation (first year certificate) in applied psychology, but didn’t get any credits in the linguistics program. Oh, I did take some classes at Open University (psychology once again) in 2009. I don’t need any education for what I do now (day activities for the disabled).

5. Have you taken any personal growth or adult education classes for fun? During the year that was Covid, did you home school, learn a new app to work from home, teach yourself to do something you might have paid someone else to do for you?
Uhm, not really. I am mostly self-taught where it comes to crafts and stuff. I would really like to take some classes in maybe crafting or writing someday, but not sure.

6. What would you like to learn how to do that you don’t know how to do already?
Right now, obviously I’d like to learn more crafting techniques, particularly polymer clay.

7. Name something that you learned easily. Then name something that was a struggle for you to learn to do.
As a child, reading print came easily to me. I taught myself to read at about age five. Reading Braille, on the other hand, was a struggle, mostly because I didn’t accept the fact that I was going blind.

8. What’s the last thing you remember learning? What kind of learner are you: visual, auditory, hands-on/kinesthetic, verbal, logical/mathematical?
The last thing I learned was moving a polymer clay slab from the work surface without distorting its shape (too much). I am probably a mix of a kinetic/hands-on and a verbal learner. I don’t do well with spoken instructions though. Rather, I need to read them.

9. Hard to teach an old dog new tricks, school of hard knocks, pass with flying colors, learn by heart, burn the midnight oil, pull an all-nighter, play hooky – which of these expression best fits your life lately? Why?
Pull an all-nighter, I guess. I’m often up late hyperfocusing on my latest obsession (currently polymer clay) and learning new things about it.

10. What is something you’ve learned from past mistakes?
To follow my own plan rather than relying on what others want me to do. As regular readers may know, I suffered autistic burnout in 2007 when at university trying to live on my own. This was what my parents wanted me to do. I ended up in the psych hospital only to be kicked out 9 1/2 years later almost with no after care even though I had hardly improved, only because I’d met my husband and my psychologist figured that if I was married I should be able to live with him. I didn’t cope and thankfully successfully fought for long-term care. This has been the best decision of my life.

What have you been learning recently?

Unsettling Dream

Posted on by Astrid

Last Monday, I had an appointment with my nurse practitioner. First, I said that I was doing pretty well. This is a big step for me, as I’m not normally accustomed to saying I’m well. He started talking about decreasing the frequency of our appointments and possibly even working towards ending my treatment. While I was able to say that this is far too early for me, at least talking about termination, it all still unsettled me.

I mean, I’ve had my latest med tweak only two weeks ago. Two weeks prior to that, I was in a major crisis.

Honestly, looking at it this way, it seems nuts that he even mentioned terminating. This honestly confirms my fear that if I’m doing well, it automatically means I’ll lose my help. Thankfully, I was able to keep myself from panicking and calmly told him that I’m not ready to stop my treatment now or in the foreseeable future. After all, I still want to lower my Abilify dose and that’d take a psychiatric provider to supervise too.

We eventually agreed on a re-evaluation in December or January and to keep the frequency of my appointments as it is now until then at least. My nurse practitioner already seemed to make it pretty clear he really wants to decrease our appointments by then, but oh well.

The following night, I had my first trauma-related nightmare since going on the topiramate. It wasn’t a direct reliving of a traumatic event, thank goodness. However, my dreams rarely are.

In my dream, I was standing on top of the Erasmus building of Radboud University in Nijmegen, a 20-storey building. Someone I didn’t recognize but who sounded strangely soothing was holding me in a comforting embrace. Then, she said: “Sit down please. I can’t hold you any longer.” Just as I was going to sit down, my right leg slipped and I was standing there with my right foot hanging in mid air. Then I awoke. I immediately realized the symbolism in this dream.

I had the sensibility to press the call button and the night shift came by. Thankfully, she didn’t just soothe me, but encouraged me to actually tell her my dream, which I did. She then confirmed that I’m not in Nijmegen now, but in Raalte.

Needless to say, I’m going to make sure at my next appt, my nurse practitioner understands that just because I’m doing well for a few weeks, doesn’t mean I’m ready to quit my treatment.

Good Enough

Posted on by Astrid

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.

Not Quite California Dreamin’ #SoCS

Posted on by Astrid

SoCS Badge 2019-2020

When I was a teen, I dreamt of going to the United States in my third year of college. After all, I was going to be an English major, choosing American studies as my specialty. Then in my third year, I would be incredibly motivated and talented and would be allowed to go on an exchange student visa to the United States.

I had already picked my preferred cities to go to. Most were suburbs of Boston. First, it was Lynn. Then Somerville.

Then, at one point, I got obsessed with Columbia, Maryland, a suburb of Baltimore. Then, finally, Silver Spring, MD, a suburb of DC.

None of these were college towns as far as I know, but I always dreamt of going to college in the city and living in the suburbs eventually. Because, after all, with my incredible talent (ahum) and affirmative action, I calculated that I’d be allowed to stay for some professional career and never go back to the Netherlands again.

Now that I think of it, it’s interesting that I never dreamt about going to California for my studies. I would say that most people choose either the east or west coast. At least people from Europe most likely do, with the Midwest, South and Great Plains being far more conservative. I just envisioned living in New England or the DC area.

And just for the record, it all never came true. I never even majored in English at university. I still haven’t been to the United States, though I hope to visit there someday. Mostly to meet some people I know.

This post was written for Stream of Consciousness Saturday (#SoCS), for which the prompt this week is “Cal-“. I could’ve written about calendar calculation, calories or Calibre (an eBook management tool). Instead, some of the other participants’ posts inspired me to write about my American dream.

Profession or Identity? #Write28Days

Posted on by Astrid

Today I finally remembered to check out the #Write28Days Facebook group and jump back onto the challenge bandwagon. The prompt for today is “Profession”.

I immediately thought of all the career paths I had envisioned for myself as a teen. When I was sixteen, I was planning on becoming an English major in college, choosing to specialize in American studies and was sure I’d leave for the United States in my third year. I actually half-joked that I’d obviously find employment there and never come back to the Netherlands.

Now of course I never even made it to being an English major. I never made it to my third year in college either and haven’t been to the United States as of yet. I’ve never been employed, in fact.

For some time, I listed my old blog as my place of employment on Facebook. Now because I’m not keen on my family reading my blog, I no longer list it on my personal profile. I don’t have work listed on my FB profile at all.

Today, I was discussing my personal strengths profile, which the mental health agency is supposed to have on file for each client, with my community psychiatric nurse. It scared the crap out of me. In the plan, you’re supposed to write about your former abilities (before becoming mentally ill or whatever), your wishes and ambitions and your current abilities. I immediately thought big, thinking that since I used to go to university before my autistic burnout and lived with my husband before coming to the care facility, I should probably want to go back to these. My nurse said I can think small too. I later thought of the fact that I used to be stable on a much lower dose of daily medications and would really like to go back to a lower dose of my antipsychotic at least. That’s a valid ambition too. I don’t really need to find a profession.

In fact, I am also reminded of last week’s Hour of Power show, in which the preacher talks about one’s title vs. one’s testimony. In the Dutch show, Carola Schouten talked about her title as the minister of agriculture and vice-prime minister. She contrasts this with her identity in Christ. I love this and felt an interesting connection to her, even though with respect to profession, she is infinitely more successful than I am. With respect to identity though, we’re both children of God.