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.

Technophobia

Posted on by Astrid

Today’s topic for Sadje’s Sunday Poser is tech-phobia. Sadje describes having been encouraged to learn Linux for a while and having had a Macbook sitting around for several months now too, but both intimidate her. She asks us, and specifies that her question may be more relevant to those of us who didn’t grow up with modern tech, whether we’re tech-phobic.

I grew up with computers and got an Internet connection when I was fifteen. That’s relatively late for someone my age, but I attribute that to the fact that I’m blind. After all, my parents did have access to the Internet already, but my first private computer, or rather the Braille display that came with it, didn’t support Internet Explorer.

When I was fifteen, I acquainted myself with the Internet quite quickly, but still stuck to old-fashioned methods and platforms far too long. I mean, I had a DiaryLand diary until 2007, when I finally moved to WordPress. Currently, the fact that for this post, I’m still using the classic editor, is probably proof of the same. I think I’m quite old-fashioned when it comes to technology. I am rarely the type to try out new functions when they first come out, or even when they’ve been out for a while.

With respect to Sadje’s question of being overwhelmed by new technologies, such as smartphones, I can only answer in the affirmative. Of course, again, this is complicated by the fact that I’m blind. I mean, a regular touch screen can’t be worked by a blind person, so it was no wonder I felt hugely incompetent when my husband tried to guide me hands-on to send a text message on his phone when I was about 29.

I was nearly 31 when I decided I wanted to learn to use a smartphone after all. Thankfully, a blind person who was also a qualified computer trainer for the visually impaired lived in my town. He came by the psych hospital to introduce me to the iPhone. He allowed me to use his iPhone to practise on during our introductory lessons, because of course if I couldn’t learn to use an iPhone there was no point in me buying one myself. Eventually, I not only was found to have the skills necessary to learn, but I mastered the use of the iPhone in half of the amount of course time he’d originally thought I’d need.

Since starting to use an iPhone, I have overcome some of my technophobia, but not all of it. Like I said, I still dread the WordPress block editor.

I’m also somewhat anxious about possibly making the transition from touchID to faceID on a phone. I know, I don’t have to, as Apple released the third generation iPhone SE last March, but with the fact that I now have a second generation SE, it just doesn’t quite cut it, honestly. For this reason, I’m really looking forward to the models going to be released this fall. Then again, if I can’t get faceID to work for me, this might be a lot of money gone to waste (unless I find out soon enough and can return the thing).

I’ve also been thinking of buying an Apple watch. That’s less of a risky investment than the faceID iPhone, as firstly they’re less expensive and secondly it’s not as essential (yeah, I consider my phone to be essential now). Both of these pieces of technology though induce my technophobia. But they’re both also really cool.

Precious Memories of My Father

Posted on by Astrid

Hi everyone. Today in her Sunday Poser, Sadje asks us to share our most precious memory of our father or the father figure in our life.

My father was a homemaker and my and my sister’s primary caretaker when we were children. As such, he, rather than my mother, was the one I’d see when I came home from school.

As a child, I took very much after my father, but now I have very mixed feelings about our relationship. My father is intelligent and he knows it. He also knows that I am intelligent and he feels that this somehow negates all my problems. In his opinion, all people who disagree with him, particularly those in the helping professions, are stupid.

Because my father and I are both intelligent, my father did encourage my cognitive development from an early age. This is evident in my different response to my parents when prompting me, for example. There’s this Dutch nursery rhyme that goes: “One, two, three, four, paper hat, paper hat.” Whenever my mother chanted: “One, two, three, four…”, I’d reply with “paper hat”. When my father chanted the same though, I’d reply with “five!”.

this is not a direct memory I have of my father though, as I was too young to form actual, verbal memories when this happened. I do remember, however, my father teaching me math when I was about seven. He would show me square calculation by using computer chips that were square-shaped. He’d lay them in a row of, say, three, then lay them in a square of three by three and explain that this is a square calculation. (The Dutch word for the square calculation and the shape isn’t the same, so I had to follow an extra step.) Similarly, he’d explain squareroots by doing the reverse.

We would also spend long evenings looking at his world atlas to see where different countries and other geographic areas were located. I still had enough vision to, with some difficulty, follow his finger along the maps.

When I got older, I had to catch up on reading, as this was one of my weaker subjects, mostly because I didn’t like the fact that I had to read Braille. My father encouraged me, well more like forced me, to do extra reading at home. One memory I have is of me reading Alice’s Adventures in Wonderland in Dutch when I was about eleven. To show me that he, too, was taking up a challenge, he read the book in its original English. I am currently listening to the audiobook in English on Apple Books.

In short, my father nurtured my intellectual side. Currently, I much more value my creative side, which my mother nurtured (a little). Still, my memories of doing academics with my father are mostly good.

Things I Am Passionate About

Posted on by Astrid

In today’s Sunday Poser, Sadje asks us what we’re passionate about. Passions can be defined in various ways. They can be things we enjoy doing, but also societal issues we hold strong opinions about. In the below list, I am going to go into both, because I do enjoy talking about the issues I feel strongly about.

1. Writing. My greatest hobby is certainly writing. I’ve always enjoyed it. It is definitely something I do with a passion. I don’t talk about my writing that much though.

2. Crafts. Another of my hobbies is crafting. Unlike writing, I do talk about my crafting a lot. I love to infodump about my latest crafty hobby, be it soap making, polymer clay or whatever.

3. Autistic, mental health and disability activism. Back in the days of my first WordPress blog, most of my posts were opinionated and related to disability, neurodiversity or mental health. I no longer write as much about autistic advocacy, disability rights or the like, but that doesn’t mean I no longer feel passionate about these issues. I have always considered myself a moderate pro-neurodiversity activist, in that, though I side with autistics and the neurodiversity movement, I do feel that most neurotypicals are well-intentioned, though privileged.

4. Calendars and timekeeping. I just need to mention this. I used to love calendar calculation, ie. calculating what date March 25, 1955 was or the like (it was a Friday, by the way). Now, though I’m no longer as interested in or competent at it, I do still feel passionate about issues relating to it. Never tell me that because it was New Year’s yesterday, there were “really two Sundays” this week. No, New Year’s is a bank holiday and this year it was on a Saturday, not a Sunday.

There are probably other things I feel passionate about, but these are the things I can think of right now. What do you feel strongly about or what do you enjoy doing very much?

How I Cope With Loneliness

Posted on by Astrid

Today in her Sunday Poser, Sadje asks us about loneliness. She describes the experience as the feeling she gets when her family or friends can’t celebrate something important (such as the seasonal holidays) with her. This is one aspect of loneliness indeed. I feel lonely, left out even, knowing that my sister will be celebrating St. Nicholas with my parents next week and I haven’t been invited. Okay, she has a child for whom this holiday is more meaningful than it should be for me as an adult. Still, I am reminded of the last year we celebrated St. Nicholas with my family, or rather, the first year we didn’t. That was because of me: I had been admitted to the mental hospital shortly before and my parents didn’t want the hassle of having to watch me while I was on leave, so at first they suggested they celebrate the occasion without me. That year, my sister refused and the celebration didn’t go forward at all. Now that my sister has a child, there’s no way she’s going to care about whether I’ll be included or not. In fact, I’m pretty sure she’d rather have me excluded.

Loneliness, however, can take other forms too. Like I mentioned last month, loneliness comes from within a lot of the time. That’s why you can feel lonely when you’re surrounded by people. I often felt this way in the high school cafeteria.

I find that what helps me cope with loneliness is to surround myself with positive influences, both in the form of people and activities. I mean, I could dwell on my family’s rejection of me, but I do have a loving husband and loving in-laws. I also have caring staff and nice fellow clients, some of whom I consider friends.

It also helps me to engage in fulfilling hobbies, such as writing, reading and crafts. Through my blog and Facebook groups, I feel a genuine sense of connection to the outside world. Reading helps me escape my problems, including my sense of isolation. Crafts distract me and help me feel that I can be productive in a way. All of these help me overcome my sense of loneliness.

How do you deal with loneliness?

How I Deal With Anger

Posted on by Astrid

In today’s Sunday Poser, Sadje asks us what we do when we get angry. She seems to mean this question in two ways: firstly, how we express our anger and secondly, how we cope with it and calm down again.

I have always been relatively quick to anger. Particularly, my tolerance for frustration and distress is very low and I tend to express this as anger. During such episodes of distress, I may scream, yell, slam doors, etc. Over the past year, I’ve even occasionally shown slight physical aggression towards people.

To cope with this type of anger, my best strategy is to enlist the help of others to get me to think through whatever was causing me frustration or distress and/or to help me solve the problem. Usually, temporarily removing myself from the situation might help a tiny bit, but it will not help in the long run, as it will not get rid of the source of frustration.

Then there are these situations in which I’m angry because someone is being unjust towards me. When I am angry at being treated unjustly, similarly, removing myself will help for a while, but not in the long run. Assertiveness can help in that it allows me to properly voice my needs, wants and rights. I am still working on this, in that I tend too often to avoid properly advocating for myself and instead resort to less helpful ways of making it clear that I’m struggling.

When there is nothing I can do about the anger or its source at a given moment, what helps me is to safely express it, such as by hitting a pillow. I also used to sing certain songs that spoke to me. For example, there is a Dutch song called “Laat me” (“Leave me”) that I would always sing at music club when I was irritated at my treatment team in the mental hospital back in the early years. Now, hitting a pillow and screaming has the same effect.

After I recover from my anger outbursts, I do like to talk through what was causing them, whether I can solve the problem at hand or not. I, after all, find that other emotions are often masked as anger, such as shame, sadness or fear. By talking through my anger after safely having expressed it, I can often get to the bottom of what is troubling me.

How do you cope with anger?

Hope and Faith

Posted on by Astrid

Today, Sadje’s Sunday Poser is about your rock in the storm. Who or what keeps you going when the times are tough?

For now, I could – should, maybe – easily say it’s my faith. I became a Christian last year and feel very much comforted knowing that, in the end, it’ll be okay. Not in this life, mind you. Jesus never promised us that there would not be any obstacles in this earthly life for us. Quite the opposite, in fact. We will still physically die and the Bible doesn’t promise Christians any easier end to their earthly life than non-believers. But in the end, in the Kingdom of God, it will be okay.

However, like I said, I didn’t become a believer until last year. I did kind of believe in “something” for many years, but that didn’t quite amount to much. So what kept me going until I started following Christ?

I guess the answer is as simple as the one above, and somewhat related too: hope. I always kept hope alive that, in the end, things would be okay. Even in the darkest depths of my suicidal crisis in 2007, there must’ve been a reason I in fact called my support worker to say goodbye rather than just killing myself without informing anyone. I felt, deep down, that there was still a way out of my darkness, even if I didn’t know what it was right at that moment.

At the time, my rescuers were the crisis service people in my parents’ city, who proposed I get admitted to the mental hospital.

That being said, I’ve never really felt that specific people are my rock in the storm. I mean, of course I appreciate my husband supporting me through everything. However, as unlikely as it is, I always have at the back of my mind the possibility that I’ll lose him at some point. That’s a residual effect of my having had very little stability in my life.

However, hope has always kept me going. It is interesting in this respect that most people who superficially know me, see me as a pessimist. I might look at things from a negative angle most of the time, but when it ultimately comes to it, I always have hope.

How I Cope With Stress

Posted on by Astrid

Today in her Sunday Poser, Sadje asks how we cope with stress. We all face stress in our lives, yes, even the most laid-back people out there. Maybe they’ve just found better ways of coping with it.

I for one find that a major stressor for me is frustration with my disabilities. For this reason, it may be that my parents thought I was very laid-back until I became aware of my blindness when I was around seven. Now, frustration in general, such as with failing technology, can set me off, but really so can frustrations when trying to accomplish something.

So how do I cope? Over the years, I’ve found several ways to ride the waves of frustration. Dialectical behavior therapy and in particular the ACCEPTS skill set has helped.

I find that distracting myself by focusing on something other than the frustrating situation or thing helps. This is hard with my autistic tendency to perseverate. For example, when I get frustrated with a polymer clay project, it’s currently hard to let go and focus on something else. But it is necessary. This is why my staff encourage me to take regular breaks and also do other activities, such as walking, besides polymer clay.

I also find that talking through my problems sometimes helps. Then, I may realize I’m catastrophizing or using other cognitive distortions. Often though, to get rid of a stressor, I need someone to take over part of the problem, or all of it, from me. After all, my problem-solving skills are practically nonexistent.

Other things I do to cope with stress include finding relaxing activities, such as diffusing an essential oil blend or lying under my weighted blanket. Lastly, writing about my stressors, problems or frustrations also helps.

What helps you cope with stress?

Independence

Posted on by Astrid

In last week’s Sunday Poser, Sadje asked what independence means to you. Her question was related to Independence Day in the United States. Of course, one can view independence and freedom in light of one’s national political situation. For example, the Netherlands is a pretty stable democracy. The country has been independent in its current form ever since 1815, though Wikipedia even lists 1648 as the Netherlands’ independence year.

I for one, however, tend to apply independence and freedom much more personally. By independence, I refer to the skills I can do by myself, ie. self-reliance. This includes eating, toileting, dressing myself, writing my blog, etc. But it also includes the skills of self-determination.

I think self-determination is particularly important. By this I mean the ability to know what you want and make it clear in some way or another. Everyone, the disability rights movement assumes, has this capacity. Yes, even people who can’t talk and are labeled as profoundly intellectually disabled. However, it is so commonly overridden by well-meaning family or “helping” professionals.

I remember a client at the first day center with my current care agency for people with intellectual disability I attended. This client had severe cerebral palsy, was profoundly intellectually disabled, couldn’t speak, had epilepsy and was blind. However, somehow, the staff had figured out that bergamot essential oil was her favorite scent.

The same client was also sometimes called “spoiled” when she cried and then was quiet once the staff put a vibrating hose around her body. I’d say she was making known what she wanted. She was using her independence!

With respect to independence as freedom, I, for one, think that self-determination is more important than self-reliance. For example, I get help with my personal care. I myself asked for this after I noticed that it cost me a lot of energy to do it myself. Even though I could, with a lot of verbal instruction, take care of my personal hygiene independently if I really needed to, I decided this isn’t a priority for me. My staff, thankfully, agree.

What is important to you where it comes to independence?

I am also joining MMA StoryTime’s Word of the Day.

When I Can’t Sleep

Posted on by Astrid

Today, Sadje asks in her Sunday Poser what we do when we can’t go to sleep. Now I must say I only occasionally suffer with insomnia nowadays. As a child, teen and young adult, I’d suffer with it a lot more often. When in the psych hospital, I even tried a handful of different sleep medications until they all stopped working and I just accepted lack of sleep. The one sleep medication I remember that actually worked for a relatively long while if I didn’t use it more than twice a week or so, was zolpidem. I liked that one best, but I actually still have a kind of psychological longing for the floaty feeling it gave me.

Anyway, now that I only occasionally suffer with insomnia, I usually still don’t like to just lie there and do nothing. The nice, floaty feeling on zolpidem would’ve helped with that at least. Rather, I usually get up and do some reading on my phone. Of course, I know that electronics are supposed to keep you awake and this may be the case for me even without the blue light (being that I keep my screen completely black). Indeed, I don’t usually find that reading helps me fall asleep, but at least it helps me pass the time until I’m naturally tired enough to fall asleep. Or until it’s morning.

I wanted to go off on a tangent here and talk about other sleep issues too. The most annoying of these is finding myself in a half-sleeping, dreamlike state where my mind seems to want to do things but my body won’t. This experience, which some people I know have said might be sleep paralysis, is extremely frightening. It usually happens when I take a nap, which is why I avoid taking naps if I’ve had this experience recently.

Which gets me to fear of sleep due to nightmares. I experience nightmares that actually affect my daytime functioning at least a few times a week. I don’t always remember my nightmares exactly and I’m not even sure those I do remember count as nightmares, as sometimes when I’m in them they aren’t fear-inducing. They however do trigger my PTSD flashbacks, if that makes sense. They usually are very vivid. I have had this issue more since starting on my antipsychotic, but now that I think of it, it’s probably more of an anxiety or PTSD symptom. I am really hoping the topiramate, which I’ll hopefully be starting within the next week or two, will help with this.