Divorced Woman Laughing…

Posted on by Astrid

Hi everyone. I’m still struggling quite a bit with all sorts of things related to my care. Haven’t heard back from the client confidante yet and it looks like either way my staff, including my support coordinator and assigned staff, don’t care. All I can do right now is power through and make the most of my day.

My wife and I had a meeting with the mediator on our divorce today. We are 100% in agreement about what we want, so it’s really an easy process for the mediator. That’s what she actually quite literally said. My wife joked on our way out that for once we’re the easier ones. We literally left the building laughing.

This is my main positive for the day. I can’t stand it that my staff all seem to assume the divorce is a major stressor in my life. I understand why, since most have probably gone through a break-up and none have been institutionalized. However, I’ve probably explained dozens of times that my best friend and the complicating factors involved with our friendship (like the divorce) are the least of my worries at the moment.

I did ask the client confidante about my daily records and whether there are guidelines on what to write in them and not to write in them. The reason is the fact that, at least once (admittedly a while ago), my then assigned staff almost word for word wrote out an argument with my wife I’d told her about. On the other hand, staff are extremely cautious where it comes to reporting on issues I’ve had with them or their coworkers. They don’t use names at all, which I can sort of understand, but they also go to great lengths to make it sound like I was always the bad one in the interaction. For example, I’ve seen staff report that I was “being rude” or “twisting their words” without elaborating on what they and I said. The reason said staff wrote out the argument I’d had with my wife, she said, was that she worried I might be stressed about it later on. Then for goodness’ sake write out the interactions I do say stress me out! But they won’t, because they don’t want to make their coworkers look bad… so they choose to throw me and my best friend under the bus instead.

After the mediation meeting, my wife and I went to Burger King to grab a vegan burger. It was good. All the while, we kept calling each other “participant A” (my wife) and “participant B” (me), since those are our formal titles on the agreement (thankfully the mediator uses our first names most of the time). At the next meeting, we’ll sign the agreement. It will probably take a while after that for our divorce to be registered. In that sense, the title of this post is a little misleading, but I like it this way.

Asserting My Rights

Posted on by Astrid

Hi everyone. Yesterday’s WordPress daily prompt was interesting. It asked us to explain what freedom means. I was originally inspired to write a post about human, civil and disability rights as they apply to my situation, but got distracted by family matters.

After last week being dragged to my room by both arms by two staff for the crime of being in the living room outside of my allocated one-on-one time and appearing (slightly) in distress, I decided to contact the client confidante on involuntary care. I remember writing about the Care and Force Act when it was just being introduced and being offended at the fact that it applies to anyone receiving care due to an intellectual disability (including acquired brain injury) or neurocognitive disorder (like Alzheimer’s, Huntington’s, etc.), not just institutionalized people. Like, under the old law, you had to be detained in an institution first before anything could be done against your (or your guardian’s in the case of being incapacitated) will. Now even those still living independently can receive “involuntary care”. And just for clarity’s sake: “involuntary care” is a euphemism for anything being done against your will, including being locked in or out of a room, forced medication, etc. As an example, if someone with dementia constantly leaves the stove on, they can be involuntarily locked out of the kitchen. Yes, even in their own homes!

However, after speaking to the confidante, I realized the Care and Force Act isn’t a free pass to do as you please if you happen to be a care provider. In fact, I’m now pretty sure that it’s indeed giving the client more rather than fewer rights, at least if they (or their guardian) knows how to assert those rights. And I know now!

Yesterday, the client confidante came by to discuss last week’s incident with me. I had given both staff involved one chance to talk it over with me before. The one leading the “involuntary care” wouldn’t budge and told me she’d talked it over with the behavior specialist, team leader and my assigned staff. She kept claiming forcing me to my room was in the other clients’ best interest. I learned yesterday that the Care and Force Act isn’t about best interest, but about “significant disadvantage”. This means that someone (either the client involved or someone else) has to be at risk of suffering significant harm (in any form, including psychological) if the “involuntary care” isn’t provided. It also requires that “involuntary care” be the last resort. In this case, the staff asked me verbally to go to my room twice, then threatened to ask her coworker to “help” then gestured to her and then they dragged me to my room. That’s not a matter of last resort!

The other staff involved used to be one of my most trusted staff. She initially blamed her coworker for forcing her into a quick decision, until I learned that they’d talked it over before I even went into the living room. Then she finally half-heartedly apologized.

This incident, however, was only the final straw again. After talking to the client confidante and being informed of my rights, I feel that a can of worms was opened of things that staff (used to) do against my will.

For example, this home is locked as a measure of “involuntary care” for two fellow clients at risk of eloping. This is in itself a questionable measure, but the thing affecting me is my being given a black-or-white choice between the door being opened at every hint that I want to leave or my not being allowed to leave the home without explicit permission at all. A similar thing is staff constantly telling me they aren’t allowed to force me into activities as an excuse to lay back at my every hint that I don’t want to do a certain activity.

Another example is the client portal with my records. I have requested access to it multiple times but the question has always been flat out ignored.

I called the confidante this morning requesting that I be allowed to E-mail her with my further concerns/questions. I did so this afternoon. Earlier this evening, fear hit me hard. What if the powers-that-be decide to give me a choice between consenting to whatever they please and being kicked out? This happened once in the psychiatric hospital and well shotgun consent but they got it.

Same when the social worker threatened to declare me incapable of decision-making and make my parents my guardian unless I signed application forms for a home everyone should’ve known I didn’t meet the criteria for. I sent the confidante another E-mail this evening asking whether the institution could legally do this and, if so, whether there’d be any chance that my parents or sister would be appointed as guardians rather than my wife, especially after our divorce.

The confidante will E-mail my support coordinator asking her to schedule a meeting between her, the behavior specialist and me with the confidante leading the process. She told me I’m allowed to file a formal complaint after that. I’ll give it some thought, but that causes me intense fear too. After all, even if no-one can legally threaten me with forced discharge or guardianship, that doesn’t mean they won’t try.

April 2026 In Review

Posted on by Astrid

Hi everyone. I’m once again joining Natalie’s monthly recap. April was a month of high hopes. I started my new day schedule, which I figured out pretty quickly wasn’t working, in part because my assigned staff had randomly added several unrelated activities to each time slot. What I had hoped for, was a schedule organized around activities that logically follow one another, rather than it being about rigid time slots. I’m still trying to persuade my assigned staff (who is unfortunately still on part-time sick leave), my support coordinator (who will be off for a long while starting next week) and the behavior specialist (who I have only spoken to once) to change this. However, even though I explained why I believe it’d work in several E-mails, I doubt it’ll be implemented, simply because it requires my staff to be more flexible with my one-on-one.

I’ve realized more and more over the past month that no-one really knows my needs. And that includes me. Some people say I’m autistic and need lots of structure and “clarity” (which they confuse with bluntness). Others believe I have attachment issues and need to build trust in my staff, only to be told that I do chatter to some random temp workers so it’s just me being unwilling. Some say that my emotional development is comparable to that of a toddler while others counter that I’m verbally more capable than some of them. Some say I need to process my trauma, but all the while they add extra layers onto it. And that’s not even speaking about my brain injury, my blindness or the fact that I’m “getting older”, which my physician blames for everything.

This month included a few cooking and baking activities, but not as many as my day schedule allows for. I only did crafty activities twice even though it’s now in my day schedule twice a week. Staff often blame me for not “wanting” even though the few times staff actually asked me, I did get something done. Thankfully, I still do enjoy each time I get to do a cooking or baking activity, work with polymer clay or ride the side-by-side bike.

I’m trying to consume fewer animal products. I was inspired both by my wife, who is a vegan, as well as by the new Dutch food pyramid. I cooked a vegan curry for this side of the home at the end of March. In early April, I cooked a chicken pasta for myself, but the other two meals I cooked this past month have been vegan. One was another curry. The image description app I used correctly identified one of the ingredients as sweet potato, which I think is rather cool.

The other was baked potatoes, onion, bell peppers and a veggie schnitzel (which the EU has decided soon can’t be called schnitzel anymore due to it not containing animal, despite no-one knowing where a cow’s schnitzel is located on its body).

Last month, I said the month was hard only to conclude at the end of writing my post that it was better than I had initially thought. I unfortunately can’t say so of April. The last few days have been slightly less horrible than the weeks prior, but I’m not getting my hopes up about this continuing in the right direction. I feel a little guilty about this, because I did do more cooking activities than I used to do. I’m wondering whether I might be depressed or something. Since I’m also experiencing significantly more sensory overload than I used to, something neurological might also be going on. I’m getting bloodwork soon to rule out a vitamin deficiency (possibly B12), because I’ve been on pantoprazole in a high dose for years and have a history of several deficiencies. I’m not sure what I hope the test will show.

Breaking Point #WotW

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again, as well as participating in the Word of the Week linky. I’ve been struggling intensely over the past few weeks and am wondering how much longer it’ll take before I reach breaking point. Or whether there is such a thing as a single breaking point, honestly. I mean, I’ve been comparing the build-up to my being quite likely burned out to the horrific experiment (I tell the animal-loving part of myself it’s just a thought experiment, but I doubt it is) of the lobster in hot water. You know, the idea that if you throw a lobster into boiling water, it’ll jump right out, but if you gradually boil it, it won’t notice until it’s too late and then it’ll die. Realizing this actually happens makes my inner vegan sick! But I digress…

First, I’d like to talk about the weather. It’s been mild with daytime temps between 14°C and 18°C, but the nights have been a lot colder. We had a little rain early in the week, but none over the past few days and there’s none in the forecast for the upcoming week either.

Then, let me share how things have been going. I’m increasingly overloaded and have had quite a few incidents of crying uncontrolably over the past week. I’ve also been engaging in some compulsive self-imjurious behaviors, particularly at night. I’ve almost literally needed the night shift each night over the past few weeks. Each evening, I’m telling myself I won’t need them tonight and feeling guilty when I do. Most night staff are still understanding and kind, but it’s only a matter of time before they, like the regular staff, will grow weary.

Unfortunately, my support coordinator and assigned staff aren’t on the same page. The rest of the team are all over the place. Most are struggling intensely with feelings of powerlessness. Some admit that they wish they knew how to help me, while others act out their feelings by screaming in my face that if I go on like this, no-one will be there for me anymore. The first group, I feel some level of compassion for even if I don’t know how to show it. The second, I only feel scared of. I’m currently actually terrified for the times the staff who screams about there being nobody for me anymore the loudest will be supporting me. This is the same staff who shoved the “one chance” rule down my throat a few months back, but she’s also the same staff with whom I used to do quite many fun activities. She’s not a bad person or a lazy staffer, but she’s most definitely overworked.

I see it’s a vicious cycle: I’m distressed, exhibit more challenging behavior, which frustrates the staff, who then act out in more repressive ways, causing me even more distress… and unfortunately it’s the staff who show the least harmful repression to me who see the most of my obvious distress. I’m extremely scared of where this will end. My worst fear is the harsh staff being seen as more effective and their actions therefore being reinforced. I’ve heard of more than one current client at this institution being “bullied” (staff’s words) into compliance and I know even the Center for Consultation and Expertise is all for ABA (applied behavior analysis), including in many cases aversives.

I do try to see some glimmers each day. I however sometimes feel guilty when I can’t appreciate them or end up spiraling over some apparently tiny detail when I did enjoy some meaningful activities that day. I constantly hear the staff’s (same staff who screams that soon there’ll be nobody) words that I have nothing to complain about because I get familiar staff and enough one-on-one ringing in my ears. I try to remember my support is better already than it was at the intensive support home, but that only contributes to more guilt over my inability to be upbeat.

Recently, after a few incidents in which I’ve become physically aggressive, I’ve been thinking I should be forcibly medicated or even euthanized. My inner animal lover sometimes contributes to this. If aggressive dogs are put down, shouldn’t I? My wife, who is a vegan, countered that just because aggressive dogs are currently put down, doesn’t mean that’s the way it should be.

Unmasking…

Posted on by Astrid

Hi everyone. I’ve been struggling intensely for a while now. The aggressive meltdown that caused me to land with my head on the floor (as I mentioned in the comments on that post, I wasn’t actually thrown) was only the proverbial straw that broke the camel’s back. I’ve been having chronic headaches and nausea that the doctor says aren’t due to the fall. Last Wednesday, I had a fever just when the doctor took my temp, so she concluded I must have the flu or something. I doubt it, as I didn’t have a fever any other time my temp was taken and I’m not having any other flu symptoms. I’m more sensitive to stimuli, mostly sounds and scents, than I used to be. Unfortunately, my ability to argue hasn’t gone, so the staff believe I’m “oppressing” them when I refuse them access to my room when wearing strong perfumes. This morning, my support coordinator told me to stop pacing my room, saying it’s compulsive and that compulsive behavior only worsens over time. She may be right about that, but it’s not like I’m doing anyone any harm by pacing and it’s not like the staff deal with the reason for my being more compulsive. I’m pretty sure I’m in significant burnout and the obvious solution to my staff seems to be to repress my behaviors that indicate I’m in distress.

I’m trying to read up and listen to podcasts on autistic self-discovery and unmasking. Not that I have the attention span to read for longer than about fifteen minutes at a time. Or that I think any of the recommendations I find, are useful to me, simply because I have an institution and rather behaviorist staff to deal with. I’m also unsure where to draw the line between valid unmasking and infringing upon other people’s rights. For example, apparently I’m not allowed to ask staff to wear less perfume because that’s “oppressive” and I don’t know where it’ll end when I keep “choosing” to be by myself rather than accepting staff who are essentially presenting in a willfully overloading manner.

Joy and the Fear It Induces #AtoZChallenge

Posted on by Astrid

Hi everyone. I’m once again late writing my post in the #AtoZChallenge. Today is another hard day. Last week when talking to my support coordinator, I realized one of the problems might be the fact that I think I don’t deserve to be happy. This is not necessarily all there is to my trauma-related symptoms and, besides, is it still paranoia if they are actually out to get you?

I’ve mentioned the fear of joy before. It has been following me forever, since learning that I was losing the little sight I had at around age seven. I always prepared for the day when I’d go totally blind. That day still technically hasn’t come, although I can hardly call the tiny bit of light perception I do have sight.

Then there is Jolanda Venema. Dutch people who are in their fifties or older will no doubt remember her photo in a newspaper in 1988. She was chained to a bed, stripped naked, in an institution for people with intellectual disability. I learned a few years ago that it was actually the institution I live in now. I am not old enough to have actually seen the original newspaper article, but I did learn about a similar case in a child and adolescent psychiatric unit in Utrecht in around 1997. This particular girl, a 16-year-old at the time whose name I forgot, was even more like me than Jolanda, in that she had a borderline normal IQ. Cases like these have always haunted me, but that got worse when I entered the care system in 2005 and more so when I was admitted to the psychiatric hospital in 2007. At the time, staff literally told me that, when I needed more support than the three nurses to sixteen acutely ill patients (if they weren’t understaffed) could provide, I’d be locked up in seclusion. And I was. And coerced into taking high doses of medication to prevent me being secluded tons of times after that.

I know for a fact that I’m not allowed to be truly happy. The adage in care is, after all, that it’s better to provide okay’ish care to two people than excellent care to one. And I would’ve agreed if care ever had been excellent. But it never was in the 20+ years I’ve been in the system and not in the 20+ years before that. At least not for people like me and Jolanda.

This doesn’t mean I never experience moments of joy and I do try to acknowledge them. I’m not purposefully being more negative in order to elicit better care. If anything, the opposite is true. However, as another incident this evening proved, most people don’t nearly try their hardest and they don’t think others do either. Well guess what? I do! That doesn’t mean joyful moments don’t induce fear, but fear is not a choice. Besides, like I said, is it still paranoia if they are actually out to get you? I don’t think so.

Institutional Abuse: Abuse in the Care System #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter I post in the #AtoZChallenge. Today I want to talk about trauma that I for one didn’t experience in childhood: trauma and particularly abuse experienced in the care system. I’m struggling majorly with this, as just this evening I had an aggressive meltdown that led to me being thrown to the ground by one staff and another staff admitting that the only reason I’m not being locked up or physically restrained is the fact that I’m not strong enough.

I want to say here that my choice of words is a bit tricky. Is it “abuse” if the client was themself aggressive, even if it was “just” verbally? I am struggling intensely with the fact that, on the one hand, my wife never locked me into a room or threw me to the ground even though I was quite a nasty person to her at times when we were living together, but on the other, there are just two staff to ten clients here. I try to understand that staff are people too and not necessarily worse people than others are. My wife sometimes said that the staff at the intensive support home were ill-intentioned at best, but I doubt it. My point is, people are part of a system. When that system is purposefully created to oppress some people, yes, the “low-key” oppressors are to blame too, but that doesn’t make them personally bad people. Many unfortunately don’t realize how much they’re accustomed to using (and abusing) their power. In fact, where it comes to care staff, most don’t even have a clue that they’re higher up in the pecking order than us clients are.

That doesn’t mean that the (ab)use of power doesn’t affect us. I mean, I was once, at the intensive support home, told that if I were dragged to my room, I had probably asked for it with my behavior. The thing is, even if I had, that doesn’t make being physically dragged not traumatic. Similarly, I can totally understand why the staff this evening threw me to the ground (I’m not even 100% sure he intended on me landing on my head), but that doesn’t mean my head doesn’t hurt.

One last thing I want to discuss, is the fact that institutional abuse may technically be a staff’s action (or inaction), but it is the result of a long line of decisions made by management, the Care Office or other funding agency and ultimately the government. It is not the client “choosing” to be restrained/locked up/drugged/etc. with their behavior and, like I said, the staff are the ones doing it, but if the government chooses a lock or shot is cheaper than support, they are the ones ultimately responsible.

Hypervigilance in Trauma Survivors #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter H post in the #AtoZChallenge. Today, I want to talk about a major symptom of (complex) PTSD which I struggle with a lot: hypervigilance.

Hypervigilance is an increased awareness of one’s environment and seemingly unimportant details in it. That is, often people who experience hypervigilance constantly scan their surroundings for signs of threat, but that doesn’t mean they’re hyper aware of everything going on. In fact, they often miss out on actually important aspects of their surroundings, such as missing part of a conversation they’re having.

There is a sensory aspect to hypervigilance, ie. increased sensitivity to noise, smells or other sensory stimuli. However, there are also cognitive and emotional aspects to it. People who are hypervigilant due to (complex) PTSD often overanalyze the things happening around them and too easily perceive them as threatening.

I for one commonly overanalyze things that I perceive. It doesn’t help that people often expect me to appraise already overloading stimuli differently based on other factors involved. Like, due to being autistic, I get very easily overwhelmed by loud noises, crowded environments, etc. However, due to both autism and C-PTSD, I also overanalyze my perceptions. For example, I often judge myself for being overwhelmed because, for instance, my fellow residents “can’t help” making certain noises.

People with complex PTSD often experience hypervigilance about other people’s intentions too. I for one am always looking for signs that the people who mean the most to me are going to betray me. It’s not like I want to, but that’s been my experience most of my life.

Hypervigilance can also show up in physical symptoms. An increased startle reflex is part of the diagnostic criteria for PTSD. Many people with (C-)PTSD also struggle to relax even when there are no sudden stimuli or changes to the environment. Which, now that I type it, I realize is nonsense: the environment is always changing even when people who aren’t neurodivergent or trauma survivors or both, do not notice. I last week had a meltdown because I was overwhelmed by the sounds in the living room, only to be told by the staff that it was totally silent. Well, except for a fellow resident’s tablet, the TV, the dishwasher and I’m not even counting the relatively “minor” everyday sounds, like birds chirping outside, the staff station clock ticking, etc.

Anyway, hypervigilance like I said can show up as physical symptoms. Many people experience an increased heartrate, heavy breathing, higher blood pressure, etc. After all, stress (and hypervigilance is majorly stressful) activates the body’s nervous system.

I don’t yet know what can be done about hypervigilance. I follow movement therapy, but so far, it’s incredibly slow-going. It doesn’t help that, like I said above, the world is ever-changing. In other words, even though my therapist talks about baby steps, I know the real world doesn’t work like that.

Grief As It Relates to Childhood Trauma: Missing Something You Never Had #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter G post in the #AtoZChallenge. Today, I want to talk about grief as it affects survivors of childhood trauma and particularly family dysfunction. I discussed grief in last year’s A-to-Z too. The thing is though, for many survivors of family dysfunction, the grief is not related to loss, but to missing something you never had. After all, for most people growing up in dysfunctional families, the abuse and neglect started before they were old enough to form clear memories. Because of this as well as other factors, many children also grow up to believe their experience is normal. After all, if you’ve never known any different, it’s hard to understand that your experience could be traumatic. This is one reason way too many people still believe that adversity experienced in early childhood has few effects because “they won’t remember anyway”.

I personally greatly struggle with this belief. Like I shared, I quite literally experienced adversity from birth on if not before. As such, even though my parents claim I was a happy child until around age seven, I have very few memories of a happy childhood.

I also struggle with the belief that “it wasn’t that bad” because it was all I knew. This means that, for a long time, I didn’t actually grieve my childhood trauma. This might seem positive, but the grief is all the worse now that I do know that my experiences weren’t normal. Besides, denial is the first stage in grieving for a reason. In other words, not knowing means I’ll never move on either.

Many people who didn’t experience significant childhood trauma, react to those grieving the happy childhood they never had with well-meaning but hurtful comments like “leave the past behind” or “everybody struggles sometimes”. In reality though, I’m not everybody and the past is part of my life.

Family Dynamics: Roles in Dysfunctional Families #AtoZChallenge

Posted on by Astrid

Hi everyone. I’m once again incredibly late writing my contribution for the #AtoZChallenge today. Today’s letter is F and what better word to choose than “family”? After all, with most people who experience complex PTSD as a result of childhood trauma, the trauma originated in the family. This, obviously, does not have to be a birth family, unless you’re talking about the experiences of a traumatic start in life. The traumatic experiences I’m going to talk about here, can affect children brought into the family at any time during childhood.

Often, there are particular dynamics in families in which at least one of the parents is abusive, addicted or otherwise dysfunctional. This is a reason siblings in dysfunctional families often have very different perspectives on their upbringing. In my own case, my sister retreated to her room whenever my parents and I had an argument. As a result, she didn’t see the way my parents reacted and she did hear my screaming. She also resents me for having gotten more attention than she got, even though most of this attention especially when we got older, was negative.

Children and parents/caregivers in dysfunctional families can have many different roles. Some of them, I’ll discuss in more detail later in the challenge. They include:


  • Golden Child: the child who “can’t do wrong”. They are often the family “favorite”, often experiencing being spoiled or having few limits placed on them.

  • Hero: the child who “proves” that there’s nothing wrong with the family. This ties in with the “lost child” role that my sister had: the invisible one.

  • Identified patient / problem child: the child/person being identified as the source of the family’s dysfunction or the reason the family enters therapy. This role shows that, even in families in which one person is clearly the one being obviously abusive, the actual problem is the dynamics within the family.

  • Scapegoat/black sheep: the opposite of the “hero”, the scapegoat is the child blamed for everything going wrong in the family. Usually they get the harshest abuse.

  • Enabler: this is the person, either the not-so-obviously abusive parent or an older child, who maintains the family’s outward appearance and tries to take care of the family at least to an extent.

For clarity’s sake, none of these roles are “good”, in that they all show that a family is dysfunctional. I mean, I was often raised as a mixture between the golden child and identified patient. I regularly tried to deny my golden child attributes, because too often the golden child turns out to become abusive towards their own partner and eventually children. Then again, being the golden child is not that child’s fault. Continuing the cycle once they’re an adult, however, is.