Autonomy: Learning That I Can Do Things and That My Opinions Matter #AtoZChallenge

Posted on by Astrid

Hi everyone. Today is April 1 so this means the #AtoZChallenge is starting. I haven’t prepared any posts in advance, but since I am going to write on healing past hurts, the concept of autonomy spoke to me for my letter A post. Autonomy is the ability to be self-reliant and independent, both physically and emotionally. It starts to develop in toddlerhood.

As I learned about emotional development as it relates to developmental disability (I discussed this in 2023), I realized in many ways I’m not there yet. I struggle with even basic decisions like what clothes I want to wear.

When I was 30, I was told I have dependent personality disorder. This disorder is characterized by passivity and the inability to make decisions independently, as well as a pervasive need to be taken care of. It is often related to lack of encouragement of autonomy in childhood.

I don’t have many memories of my early childhood, but I do know I wasn’t given a lot of autonomy when I was older. It’s not that my parents didn’t try, but as soon as I got frustrated, they gave up. They genuinely believed they were giving me autonomy and that I was just too stubborn to want to be independent. For this reason, they claimed and to this day still claim it’s my choice to be in the care system.

My psychologist back in 2016, the one who diagnosed me with dependent personality disorder, sided with them. She said I did have the assertiveness to stand up for myself, but wasn’t doing things I was (thought to be) capable of. That’s not what dependent personality disorder is though: lack of confidence in one’s own physical capabilities is but one criterion out of eight. And please note: it’s specified that the reason someone isn’t doing something, is in fact lack of confidence, not lack of skill or motivation. In other words, unwillingness to do things independently that you can do, is not dependent personality disorder, but care misuse.

And for clarity’s sake: I am not and never was misusing care. However, that’s exactly what my psychologist thought I was and according to which presumption she treated me by kicking me out of the mental hospital with virtually no support. She once again didn’t encourage me to develop autonomy. Refusing to help someone who clearly asks for help, contrary to the current idea in mental health services, may be politically useful, but it is not autonomy-supportive.

I am only now, now that I’m nearly forty, learning that I in fact was conditioned by both my parents and the psychiatric hospital to disregard my own opinions. Yes, being able to do things independently, is one aspect of autonomy, but so is the ability to make your own choices. One can hardly exist without the other.

March 2026 In Review

Posted on by Astrid

Hi everyone. It’s the last day of the month and that means I’m joining Natalie for her monthly wrap-up. March was a tough month. As I say this, I hear a little voice in my head saying I’ll never be happy anyway as I’m so negative. One of my staff on Sunday said I have nothing to complain about because I get regular support workers and my day schedule is followed. I still wonder how much of my dissatisfaction is indeed due to circumstances that can be changed, such as my day schedule, how much is due to the inherent nature of my being multiply-disabled and living in long-term care and how much is my attitude.

In any case, early in the month I heard that my activity-based day schedule would be taking effect on April 1. That’s tomorrow. Unfortunately, on the same day, the staff’s hours are going to change and this, even though the literal hours they are in the home won’t be cut, means my support will be cut a little. We’ll see how that goes.

I tried to adapt to the new support hours already and this was incredibly hard. I also tried to myself follow a schedule with more meaningful activities. This was partly successful, especially with staff who are already able to help me get more meaningful activities done. For example, last week, one of the staff helped me create a unicorn-themed card for a former fellow resident from the intensive support home, who had her birthday that day.

Thankfully, one staff, with whom until then I’d only been doing dice games and going for walks, herself took the initiative to ask a colleague to orient her to the polymer clay activity.

I have been cooking and baking more than I used to. For example, I baked so-called “healthy” brownies that I fully intended on handing out at the monthly local brain injury meet-up. They weren’t all that good though.

Later, I found out I had a Trojan on my computer that came with the recipe manager app I used to download random recipes off Facebook into, including this “healthy” brownie recipe.

Before I found out I had malware on my computer, I had been obsessing over the idea of cooking vegetarian curries. Most of the recipes, I got off English-language food websites like BBC Good Food, so I’m not sure I’ll be able to use them. After all, though my English is quite good, my staff’s might not be.

Last Saturday, I cooked a delicious cauliflower, tomato and chickpea curry. This recipe was in Dutch, by the way.

Now that I look over this post, I wonder what made the month so tough, given that I once again did more meaningful activities than I used to. I do believe part of the problem is the fact that I’m still not adequately supported when I’m struggling. I mean, highs and lows are to be expected even when you’re having the proverbial time of your life. When people expect me to have a positive outlook because “I have nothing to complain about”, that is horribly invalidating. Life in the care system isn’t great and it isn’t meant to be. I don’t expect to ever rate my days higher than a seven out of ten, but when staff do have this expectation of me, it’s incredibly frustrating. I’m hoping something can be done about this.

Of course, this was also the month I finally realized I’ll never have an okay relationship with my parents. It’s tough realizing I never experienced a proper bond with my parents and even tougher to know that no-one can replace it. However, I do think I’m more capable than I used to believe. I’m not sure how I feel about that.

I’m Participating in the #AtoZChallenge Again After All

Posted on by Astrid

Hi everyone. A few weeks ago, I wrote my intended theme reveal for the #AtoZChallenge. I had been unsure of my theme for a while and also unsure of whether I even wanted a theme. I finally decided on doing the challenge on gender and sexual diversity, published my theme reveal and then remembered to ask one of the hosts whether it meant my blog should be marked as having adult content. I got the response to do so just to be safe. That somehow put me off and I decided to delete my theme reveal post (thankfully I hadn’t put it into the Google document yet). I hope the fact that I’ve disclosed being queer on here a few times, doesn’t automatically mean my blog has adult content.

Fast forward to last Friday and I had the phone call with my mother I mentioned in my post that day. That got me thinking I want to write to process my feelings. So here I am thinking of doing my challenge on healing past hurts. I have not prepared any posts yet, so I’m not sure where this is headed, but I think it will be part journal/personal musing, part mental health awareness. Wish me luck!

Three Wishes, Revisited

Posted on by Astrid

Hi all. Last Tuesday, I saw the Writer’s Workshop prompts for this week. Several of them spoke to me but I somehow didn’t give myself the time to actually write on them. Today, I’m finally back on the blog and I’m choosing the prompt in which you’re granted three wishes. I did a post on this topic already in 2020. Let’s see how things have changed over the years. What would I wish for now?

1. Unlimited door-to-door transportation. I listed ParaTransit access as a wish in 2020, but now that I’m actually using it for things other than getting to my wife, I realize that it’s not that having unlimited kilometers would solve my problems getting to places. I’d also need the driver to actually drop me off at the place I want to go to. Transportation, after all, is one of the reasons I don’t go to cerebral palsy meetings as often as I’d like, because they’re often organized at restaurants, which taxis can’t reach.

2. My ideal room/apartment within a care facility. In 2020, I wanted to be closer to my wife, but if I have my transportation desires covered anyway, that’s no longer a necessity. My ideal place wouldn’t be much larger than my current room, but it would have a private bathroom and its own kitchen, in which I could prepare my own food with assistance. It would also not be as close to communal areas as my current room is, because well one of my main problems right now is overload from all the sounds coming from the living room.

Looking back, I can’t believe I didn’t list more care hours as a wish in 2020, being that I didn’t have my one-on-one at the time. I do now and of course I wish for it to stay the same.

3. Improved physical and mental health. Don’t we all wish for optimal health? I listed it in 2020 too, as my first wish in fact. Since then, my physical health has improved in some ways and declined in others. For example, I’ve lost significant amounts of weight that I indeed needed to lose and as a result, no longer have high blood pressure. I can also walk for longer. On the other hand, my tremors have gotten significantly worse and I believe my cognitive functioning has declined a bit too.

My mental health, I think, is better than it was in early 2020. I hope it improves more though.

Now that I compare my wishes to the ones I listed in 2020, I see an interesting trend, in that despite better quality of life, my wishes are still largely the same. No, that’s not entirely true: they’re bolder, in fact. I wonder what this means.

Janie Mac I’m Nearly Forty…

Posted on by Astrid
Daily writing prompt
What are your thoughts on the concept of living a very long life?
View all responses

Last Monday, I had a meeting with the intellectual disability physician who prescribes my psychiatric medication. The first thing we needed to discuss, was me tapering my antipsychotic. That’s going on, thankfully. However,I also had been complaining for months about increasing tremors in my right leg and hand, decreased mobility and more pain. Unfortunately, according to her, there’s nothing that can be done about these issues to make them go away. I mean, she’s referring me to occupational therapy, but it’s not like that’s going to lessen my symptoms. More like make them more manageable, I hope.

She says my symptoms are due to the brain bleed I suffered as an infant. She however added: “You’re getting older.” Ouch! I’m turning forty this year. That’s not old, or is it?

I’ve always thought that I wouldn’t live a very long life. I mean, my paternal grandma made it to 94 and, when I was a child, my parents thought I took after her. Now, not so much. My other grandparents all lived to be in their late seventies or early eighties. My father will be 77 next week and my mother will be 71 in April. Familially speaking, I’m not at risk of dying young, even though my maternal grandmother suffered from heart disease and diabetes for decades before her death.

However, I do have the brain bleed. Cerebral palsy in itself doesn’t limit one’s life expectancy. Autism, statistically speaking, does. And it’s probably due to my mental health that I won’t make it to old age. I’ve had more close calls in the last few years than I’d like to admit.

My wife and I recently had a discussion about who would go first. She doesn’t cling to life as much as I do, but I’m far more impulsive. I hope both of us will make it to old age and in relatively good health too.

The above song has been on my mind for a few months already. My wife and I have been together eighteen years, but oh well…

My Hopes for 2026

Posted on by Astrid

Hi all! I’m publishing a second post today to share my hopes for the new year. I don’t call them resolutions and I honestly hardly look back at them over the year, but it’s somewhat fulfilling to notice that I did make about half of my hopes for 2025 happen indeed. In fact, when I was talking with my wife about the year 2025, I realized I’d done better than I had expected, contrary to what I said in my yearly review. Anyway, here are the things I hope to achieve in 2026.

1. Get in more and more varied physical exercise. I am pretty sure that this is going to be a hard one, because it looks unlikely that I can go to the gym regularly or go swimming again. However, there are other ways too, like yoga, pilates, etc.

2. Do more meaningful activities, such as cooking, baking and crafting. This was one area in which 2025 has been less successful than I’d hoped but more successful than 2024. I’m still hoping to make that standing unicorn sculpture I mentioned yesterday happen. However, even if that’s not going to happen, I hope to include crafting and kitchen-based activities in my day schedule regularly.

3. Focus on mindfulness and gratitude. I am finding that even a few minutes in the Gratitude app helps lift my mood. I honestly think this is because it’s something new, but I hope that I can keep up the mojo. I already started this habit in 2025 when I wrote the positives and negatives of each day and E-mailed them to my assigned staff. I’ll continue to do so this year.

4. Improve my wake/sleep schedule. Over the past six months or so, I almost always spent most of the morning in bed. I’d really like to change that. Today was good in this respect.

5. Write more regularly. I don’t just mean blogging, although I seriously hope to do more of that too. I mean, my blogging year was better than 2024, but 2024 was about the most disappointing year blog-wise. I hope to write more this year than I did last year. I also started doing Morning Pages again. I however don’t get up early for them, because I know that’s a recipe for disaster. Rather, today, I did mine after breakfast, when I used to hop back into bed.

6. Further taper my medication. I’m having another meeting with the intellectual disability physician, who prescribes my psych meds, next week. So far, I’m pretty sure I’m still able to further decrease my med dosage.

7. Stay relatively mentally stable. This is an almost obligatory item on the list, as I honestly think the above have covered all I can do to help myself along in this respect. Some of the contributing factors to my deep lows have been related to external circumstances. Now I wouldn’t say I have absolutely no influence on those, but it’s not like I’m all-powerful.

8. Stay true to my wishes and needs with respect to my care. This means, for example, that I will continue to assert my right to informed consent for all of my care agreements.

9. Expand my social circle. Like I shared on Monday, I fully intend on going to more meetings in 2026. At least one of those, the brain injury support meeting, is local. I also intend to go to the nationwide cerebral palsy day in April. I intend to go by myself. In previous years, I went with my mother-in-law, but I’m not in contact with her anymore. Besides, I am pretty sure that, now that I know quite a few other participants, being accompanied by her is a hindrance to my social inclusion more than a help.

10. Be more conscious of my food choices and eat more healthily. I stepped onto the scale yesterday evening and the number wasn’t pleasant. Now I do know that part of that is probably holiday weight and part is the fact that I’ve been moving less. Regardless of my weight though, I seriously hope to be making healthier food choices.

Do I Have a Mental Illness?

Posted on by Astrid

Hi everyone. Several happenings today, including my reading today’s Friday Faithfuls post, made me think about the question whether I have a mental illness. Or should I say mental health condition? Is there even a difference?

People who know me, may be surprised at the fact that I even ask this question. I mean, of course! I spent nearly a decade in a psychiatric hospital. Then again, when I was first admitted, the psychiatrist deciding to admit me made it very clear that she wasn’t diagnosing me with a serious mental illness. I had a diagnosis of autism, of course, which though it is in the DSM and though here in the Netherlands it falls within the realm of psychiatry, isn’t technically speaking a mental illness. To be added to this diagnosis was adjustment disorder, which in short means an inability to cope with the stressors of daily life. Nowadays, people with this diagnosis alone don’t qualify for mental health services, let alone admission to a psychiatric hospital.

But once I was in the system, numerous mental health diagnoses which may fall under the realm of mental illness, were added. My first was impulse control disorder not otherwise specified, which I’m pretty sure was just a way of explaining away my meltdowns without admitting they were due to less than adequate care. I often wondered why they singled out impulse control as the only issue on which they gave me the vague “not otherwise specified” diagnosis. I guess it’s because, unlike my anxiety, depression, disordered eating, etc., my meltdowns did bother other people.

Then, several years later, came (complex) PTSD and dissociative identity disorder. These are mental illnesses, but they are caused by overwhelming circumstances, just like adjustment disorder.

Later came borderline and eventually dependent personality disorder. Finally, I was diagnosed with recurring depression in 2017.

All this to say, whether I have a mental illness or not, isn’t as straightforward as it may seem. I do know that my current care plan lists “mental health problems” as a general “diagnosis”. I honestly try not to care about the specifics of my diagnosis, but I’ve learned the hard way that the specifics can be used against me. For example, when I had the personality disorder diagnoses, I was kicked out of the psych hospital with almost no aftercare because of allegedly misusing care. I wish the higher-ups would look beyond the labels and at the individual.

Overcoming Negative Emotions #AtoZChallenge

Posted on by Astrid

Hi everyone. I’m really struggling and honestly, even though it’s past 10PM, I haven’t even completely decided on a topic for my letter O post in the #AtoZChallenge. I did a quick Google search for personal growth topics and the only one with an O I found, didn’t even have an O as its main first letter. It was “Overcoming fear and anxiety”. Then I realized that “obstacle” starts with an O so if we’re rebranding it as “Overcoming obstacles to mental health”, the main word does start with an O. Let’s go!

The topic of overcoming negative emotions and moods that are obstacles to mental health, ties in with many other general self-help topics. After all, many things that help people overcome mild to moderate symptoms of anxiety and depression, also help people feel better overall. These things include:


  • Mindfulness: being aware of your thoughts, feelings and actions without judgment.

  • Gratitude: focusing on the things you do have rather than the things you don’t.

  • Physical activity, including something as simple as a walk, but also running and other more intense exercise.

  • Healthy and balanced eating habits (yes, that includes the occasional treat!).

  • Making sure you get enough proper quality sleep.

  • Spiritual or religious practices, such as prayer, spells or meditation.

  • Contributing to your community.

  • Distracting yourself by engaging in a hobby, such as reading or crafts.

More specific practices that could help according to some are sitting with feelings, putting your problems into perspective by thinking that it could be worse, and forcing yourself to smile. Yes, I seriously got these from a handout in dialectical behavior therapy (DBT), a therapy approach applied to an increasing number of mental health issues. You’d be right if you thought I don’t think highly of these ideas. That is, I either focused on the wrong aspect of the teaching and the bigger picture was different, or these people are indeed horribly invalidating.

One thing that I did get from DBT that might make a tiny little bit of sense, is opposite acting (hey, another O). This means that you do the opposite of the immediate impulse your feelings and thoughts trigger. For example, if you are feeling depressed and your impulse is to lie in bed and isolate, DBT instructs you to actually go out and meet people. This is probably where the forcing yourself to smile comes in. Facing your fears is also a way of acting opposite to the emotion and this is, when done gradually, actually effective in treating mild to moderate anxiety.

My Hopes for 2025

Posted on by Astrid

Hi everyone. It’s January 1 and I am absolutely not motivated to set resolutions or goals for the new year. In fact, I think calling them “hopes” like I usually do, isn’t doing the trick either. I’m too scared that voicing my hopes is tempting fate. However, I’m going to push through anyway and write them down.

1. Be more aware of my eating habits and eat more healthily. I am still within the agreed-upon weight range for my dietitian (or was when I last weighed myself, which admittedly was before Christmas), but barely so and I’d really like to lose some weight. More importantly though, I need to make sure I’m making healthier food choices.

2. Find a physical activity other than walking that I will be able to do regularly for a longer period of time. I tried swimming, but it’s rare that a staff who can meet my needs is assigned to me during the time the pool is open for me. I’m thinking of going to a gym.

3. Give movement therapy (Sherborne) a fair chance and make some progress on it. I do think I gave play therapy a good enough chance, especially since my first impression of the therapist was already quite bad and I went nine times or so. However, I really do think I need to step out of my comfort zone in movement therapy if I want to make it work.

4. Further taper my medication. This needs a caveat though, since I need to really be aware of whether decreasing my dosage is a wise decision and, if not, what the alternatives are.

5. Remain relatively stable mental health-wise. I have been doing okay over the past month or so and my staff say that certainly after my last med taper, I’ve been relatively stable. Like I said, I’d really like to taper my medication even further, but it’s a priority for me to stay within an acceptable range with respect to mental stability. Although I feel that meds are for me, not anyone else, I don’t want to become an unmanageable monster.

6. Work on self-improvement in the areas of communication, mindfulness and distress tolerance. This is a biggie, but I feel that I really need to work on better interpersonal skills.

7. Broaden and deepen my creativity. I may want to explore hobbies that I have tried before but thought unsuitable, such as jewelry-making. I also hope to develop my skills further in the hobbies I already pursue, such as polymer clay, smoothie making, etc. I hope to do more baking and cooking too.

8. Blog and write more regularly. I wrote 110 posts over 2024, which is a big disappointment for me. I hope I’ll be able to blog more often. I also hope to write more regularly in general.

9. Stay at this care home. I’m really hoping that I won’t make another stupid mistake and end up moving again, either because the powers-that-be think that I want to or because the staff consider me unmanageable.

What do you hope to achieve in 2025?

Friday Feels (December 6, 2024)

Posted on by Astrid

Hi everyone. I’m joining Debbie for Friday Feels, in which we’re asked three questions about our week and tasked with finding an F word to describe it. My post isn’t nearly as upbeat as Deb’s, but oh well.

F Word

My F word for this week has to be “fatigue”. Like I said last week, I was sick with a nasty cold. Well, I’m pretty sure it was COVID judging from how exhausted I was all week. I’m finally feeling mostly okay today.

What Made Me Happy?

There aren’t many things that made me especially happy this week, but I am glad to report my mental health hasn’t suffered significantly from a week in bed. In fact, I’ve had many crafting and writing ideas float through my mind and, this time, I was actually able to transform some to blog posts. I’m not yet there with respect to the crafting.

That being said, getting my new craft supplies that I’d ordered last week, did make me smile. I had forgotten how many things I’d ordered, but there are literally nine new colors of Premo polymer clay in the package, as well as a few really cool cutters (among which a 5mm heart) and a new silkscreen. I hope I can figure out a way to use the tiny cutter, as I’d love to decorate my next unicorn with a heart.

What Made Me Sad?

Being in bed. That is, I didn’t really have the energy to feel sad, but negative thoughts did creep up on me at times. Like I said above, however, my overall mental health hasn’t gone down significantly.

What Made a Difference?

My feeling optimistic about recovering from this nasty cold/COVID thing. Don’t get me wrong, I by no means believe that a positive attitude cures viral infections, but my not wallowing too much in frustration, helped prevent my mental health from spiraling down.