March Memories

Posted on by Astrid

Hi all! Can you believe we’re already halfway through March? I honestly feel that time flies. Today, I want to share some random memories from Marches (is that a word?) gone by.

First, a year ago, I had just recovered from second-degree burns that I sustained in a crisis. Looking back, my life is much better now than it was a year ago, when we were in the midst of a weird idea from the staff that said I had to compensate for every minute I needed support outside of my designated one-on-one hours because of distress. I sort of understand the reasoning, because, at the end of February, I had shared with my behavior specialist and some therapists that, in an ideal world, I’d be able to rely on staff all the time. What I didn’t realize at the time, thanks to all the words about “unsupported time” in my day schedule, is that this is basically already the situation in 24-hour care. Of course, I can’t always expect a staff to show up in no time when I need one, but it isn’t like I’m ever truly supposed to be self-reliant. That’s until that crazy idea about compensating came to be, because, as one of my staff said it, my “unsupported time” was supposedly my structure. Let’s just say I disagree and am so happy that, after a month, the system was abandoned at the end of March again. Now, it’s actually in my day schedule that I can rely on the staff for support when in distress during my times of doing my activities by myself.

Two years ago, I finally had a meeting to discuss my leaving the intensive support home. I’m so very happy I insisted. I remember the intensive support home’s behavior specialist was a bit critical, because, well, I apparently hadn’t left the care facility in Raalte in 2022 completely voluntarily. As it turned out, some staff had been more happy that I’d finally gone than they had admitted. This is somewhat understandable, given that all other clients there had severe to profound intellectual disability and no or minimal challenging behavior.

I can’t believe I’ve been at my current home for eighteen months already. As I share these two snippets, one from 2024 and the other from 2023, I am intensely grateful. I am still struggling at times, but then again I was even at the best of times in Raalte.

Sharing this post with RDP, for which the prompt today is “March”.

Growing Up Emotionally

Posted on by Astrid

Today’s Ragtag Daily Prompt is “when I grow up”. I’m going to be forty next year, so by most standards, I’m considered to have “grown up”. Only by the model that includes life experiences such as working, buying a house, etc., I’m not necessarily truly an adult. After all, though my spouse and I own a house together, buying it was mostly done out of necessity so that I could go into long-term care. I’ve never worked, not even had a side job as a teen.

That being said, in many respects I’m still young at heart. I know everyone my age says so to be cool, but I don’t mean it in a positive way. Rather, I mean it to say that emotionally I’m very vulnerable. Like I shared when discussing emotional development as it relates to intellectual disability (and autism) in 2023, on many subscales of the emotional development assessment used here in the Netherlands, I’m considered an infant or toddler. That doesn’t mean I can’t grow.

When I grow emotionally, I’d like to become more regulated. My psychiatrist used to say that I’d likely experience less emotional dysregulation after age thirty. I’m not sure that’s true in my case. In fact, I’m pretty sure it’s not true. The frequency and severity of my meltdowns has increased, though the duration has lessened significantly. I no longer experience outbursts that last all day. That, I mostly attribute to my staff’s proactive attitude.

I’d also like to be more independent. The problem with this, however, is the fact that my energy level varies significantly from day to day. Because of this, I hardly ever progress in my independence even though I might be able to. The reason is the fact that, if I do something independently once, my staff and others are going to expect me to always be able to do it.

Same for adaptability and emotional regulation: my abilities vary from day to day and sometimes hour to hour. I, for this reason, struggle to really make progress. That doesn’t mean I don’t want to.

Parenting Advice From a Childfree Survivor of Childhood Trauma

Posted on by Astrid

Hi everyone. Today’s RagTag Daily Prompt is “parenting”. Since I’m currently recovering from meeting my parents for my birthday, I’m going to make a list of parenting advice my parents should’ve received. I realize their inability to love me unconditionally wasn’t unwillingness. In fact, the fear that I may have this same inability is one reason I’m childfree. This post is a random list and may come across a bit harsh, but so be it.

1. A family is not a business. It doesn’t have to be run efficiently. Yes, I understand you get impatient with your child’s struggles at times, but this isn’t their problem – it’s yours.

I was constantly shamed for needing too much help and my parents gave up on teaching me basic skills of daily living because I got frustrated and the task didn’t get done efficiently.

2. Challenging behavior does not make the child (especially young child) bad or manipulative. Behavior is communication, yes, but to search for hidden motives behind it, is actually quite arrogant.

I was told by my parents that, by age seven, I had come up with some idea to manipulate everyone into thinking I was different in all kinds of other ways besides blind because I didn’t accept my blindness. News flash: I am those other things.

3. Children are incredibly loyal to authority figures, be it their parents, teachers, or others. When you fight the school or healthcare system over something rather than trying to be cooperative, the child will experience a conflict of loyalty. This means that, just because they side with you eventually, it isn’t necessarily in their best interest.

My parents were constantly fighting the school over my needs, because the school denied my intelligence. Then again, my parents minimized my emotional difficulties. When an educational psychologist who saw both my intelligence and my emotional issues, nonetheless advised special education for me, my parents still weren’t happy even though they’d chosen this ed psych, because they were dead set on me being mainstreamed.

4. Your child is not an extension of your ego. For this reason, they do not have to follow an educational or career path you like. It isn’t their job to make up for your lost dreams.

See also above. From the time I was a young child on, it was clear that, by age eighteen, I’d live on my own and go to university. Interestingly, neither of my parents have a college degree and particularly my mother feels “dumb” for it even though she worked herself up to a management position that usually requires a college degree.

5. Your child doesn’t need to prove their value. They do not need to prove they were “worth raising” by being anything, be it independent, successful, or whatever. If you don’t want a disabled child, a child of a certain gender, or whatever, you shouldn’t have a child.

I have probably said this before, but my parents, particularly my father, seriously think that a child needs to prove they were worth raising by being successful in life as an adult. He didn’t mean me when he said this, “because you’re training for independent living”. Well, now that I’m in an institution with seven hours of one-on-one a day, he obviously does mean me, since the few times I’ve seen him since he’s barely acknowledged me.

6. Love your child unconditionally. This does not mean agreeing with every single decision they make, but it does mean being there for them when they need you. And this doesn’t end when they turn 21. With a few exceptions (an adult child becoming a criminal, for example), parenting is a lifelong commitment.

I am linking this post up with #WWWhimsy as well.

My Favorite Color

Posted on by Astrid

A few days ago, or maybe it was even a few weeks, the daily prompt in my journaling app, Day One, was to write about your favorite color. I couldn’t think of what exactly to write at the time. Now, as I sit here and today’s Ragtag Daily Prompt stares at me, I just have to write.

Is my favorite color actually purple, you’d ask? Well, yes, it is one of my favorite colors and if I had to pick just one, it’d probably be this. I usually say I have multiple favorite colors, namely purple, blue and green. They all are represented in the six bottles of alcohol ink I ordered online earlier this week: three shades of blue, two shades of purple and a shade of greenish blue too.

Then again, with respect to clothes, I used to only wear black for many years. It was a statement, in my mind, but the statement never came across. I guess everyone thought it was just easier for me to match my clothing that way, being that I’m blind. And it was.

Now that I do wear colors, I have to say I don’t actually have anything purple in my wardrobe. I should really change that.

And I should get to crafting a purple unicorn ashtray for the male staff doing my one-on-one shifts once a week, who I overheard is leaving in October. Oh wait, he asked for a pink one. And polymer clay isn’t suitable for ashtrays anyway. But he’ll appreciate the humor.

Empathy

Posted on by Astrid

I’ve been thinking about empathy lately. A few weeks ago, I wrote that I have been looking at my personality from a highly sensitive person or empath theory perspective. Though this is still somewhat fitting, I indeed experience this strange mix between low empathy and hyperempathy.

I mean, I pick up on the general atmosphere in a room pretty easily. I also absorb others’ emotions. I feel when other people are sad or angry in distress. I cannot pick up on happiness as easily, but I’m learning.

Then again, when presented with a social situation, be it in theory or in real life, I show very little empathy according to neurotypical standards. I have absolutely no idea how to articulate how people are feeling.

I recently saw a post by Ashley on alexithymia. Ashley contrasted alexithymia with borderline personality disorder, in which people are overly emotionally sensitive. Well, I have both. Or maybe I just have the autistic women’s general mix between high and low empathy.

The interesting bit about alexithymia is, when being assessed for it in 2017 as part of my last autism assessment, one of the scales was on interest in talking about emotions and such. I scored normal if not high on that one. Similarly, when taking personality tests like those based on the MBTI, I usually score higher on feeling than thinking. That’s because I somehow want to see myself as a sensitive person. That doesn’t necessarily mean that I am though. Like I said before, my husband sees me as an obvious INTJ.

My community psychiatric nurse signed me up for a psycho-education course on autism this past week even though I know quite a bit about it already. Looking over all the criteria, I thought: “That must be so hard to deal with… Oh wait, that’s supposed to be me.” There was a bit about lack of empathy too and that made me feel awful. As much as I “wanted” an autism diagnosis when last assessed for it, I don’t want to be seen as having low empathy.

This post was inspired by today’s RagTag Daily Prompt.

COVID-19 Worries

Posted on by Astrid

The coronavirus came to the Netherlands a few weeks ago. Yesterday, we had the first case in the care facility’s town. The care facility hasn’t yet been affected as far as I know, but still, I grow more scared as the days go by.

I’m not scared of falling seriously ill or dying from the virus. Though some of my fellow clients are in their sixties, we don’t have anyone in my home who is otherwise at risk of serious illness or death as far as I know. I am not really sure whether I should worry about my family in this respect. So far, the thought has only fleetingly crossed my mind.

What I do worry about though is the consequences this will have for our society at large. I worry about people stockpiling food. I know my husband got some extra stuff a few weeks ago already when he saw it coming.

I worry about another economic meltdown. My husband has a pretty secure income, having just been hired indefinitely at his job a month ago. He might be forced to take time off, leading to a significant decrease in income, but he won’t be jobless. I am not sure about my income, as I’m on benefits. I don’t know that I will be able to handle yet another round of budget cuts to health care though.

More importantly in the short term, I worry about the need to isolate if you’re infected. What if I get the virus and need to stay in my room 24/7 for two weeks, not being allowed any human contact? Some other blogger idealized this by writing they’d finally have time to read all the books and binge watch all the Netflix series they wanted. As much as I’d like to escape the day center at times and just hide out in my room, I don’t think I could make this work for two weeks straight.

I also worry about staff needing to self-isolate if they get infected. Will this mean there won’t be staff to care for us? My staff has been trying to reassure me, but the letter sent out to clients’ family yesterday, had no information about what if the virus enters the facility in it. Which seems to be more of a “when” than an “if”.

I’m linking up with today’s RagTag Daily Prompt, for which the word is “Isolate”.

Something Between Me and God

Posted on by Astrid

So Christmas is over. My own family doesn’t care about it much. We didn’t visit my parents this year. My sister, brother-in-law and three-month-old niece saw our parents for a few days before Christmas. My husband had to work, so we didn’t have time to come over then. We could have come over today, but I personally don’t like visiting my parents if my sister and brother-in-law aren’t there too. All of us live in different corners of the country and my sister and husband both work irregular hours, so ideally we find a day when we can all be together. That doesn’t have to be at Christmas. It helps that my family aren’t religious. My parents are both atheists.

I am not an atheist, but I prefer not to subscribe to organized religion. Yes, I derive meaning from reading Christian devotionals and listening to Christian music. I also sometimes pray. I no longer attend church and never attended regularly. I take the Bible with a large bucket of salt. Yet I feel very touched by the nativity story.

Recently, when going through my Facebook profile and privacy settings, I chose to delete my religion off my profile altogether. It listed “progressive Christian” up to that point, but really I think it’s none of my 500+ friends’ business. My husband says religion is something between him and whatever higher power he believes in or not. It is not that I don’t want to share – I am doing that now -, but I don’t want to label my belief system. Maybe in some respects I’m still a seeker.

And yet, sometimes I wish I subscribed to an organized belief system. I mean, I love to connect to spiritual and religious bloggers, but it’s hard to find this connection without sharing their doctrine. Am I truly being honest when I tell a Christian blogger that I agree with their spiritual message even though on fundamental matters of doctrine, we most likely strongly disagree. I mean, my husband at one point read me the Nicene creed, on which all Christianity is based and I didn’t agree with some points.

Then again, it’s not up to the humans who wrote that creed to judge me at the end of times. They may kick me out of their blogging communities, but they won’t ultimately decide whether there’s an afterlife and if so, how I get to spend eternity in it.

I love to derive meaning from all sorts of spiritual sources. Most are either Christian or New Age-based. I don’t think believing in God and Jesus contradicts belief in one’s inner spiritual power. I don’t think I need to take the Bible literally or even semi-literally to consider myself religious. Like I said, my spirituality is something between me and God.

I’m joining in with RagTag Daily Prompt, for which the word today is Spiritual.

My Favorite Ways of Staying Active

Posted on by Astrid

Today, I am joining in with the RagTag Daily Prompt for Thursday. It is “Exercise“. I am a pretty sedentary person, but nonetheless, I love getting moving every once in a while. Here are my favorite ways of staying active both physically and mentally.

1. Walking. My absolute favorite way of physical exercise has to be walking. Due to my disabilities, I am not safe leaving the house on my own for a walk, but I do enjoy walks with my support staff or other people. As regular readers of this blog know, I go for a long walk each Monday at day activities. This week, unfortunately, it started to pour when we’d just been out of the door for five minutes, so we had to return. Both today and yesterday though, I went for an hour-long walk with my support coordinator.

2. Swimming. My second most favorite way of exercising physically has to be swimming. We do it at day activities every other Tuesday. My Fitbit activity tracker is water-proof, so it tracks my swimming activity too.

3. Going on gym equipment. I have an elliptical at home, which I really need to use more often. I manage twice a week on average, but sometimes I don’t go for over a week.

I also discussed with my support worker getting myself a gym membership. There’s a gym in the nearby city that has services for people who suffered brain injury. I’d love to go there.

4. Yoga. I used to take yoga lessons at the institution in Nijmegen many years ago, but I quit eventually. Then I tried to practise on my own. My husband eventually borrowed my yoga mat for his own exercise, then threw it out because it’d disintegrated. I just ordered myself anew one, which should arrive tomorrow. I tried to do yoga on my bed today, but that wasn’t really ideal.

5. Horseback riding. This isn’t particularly exercise-y if you ask me, since we just step around. However, it is an activity that I commit to once a week and that keeps me healthy – or so I’d like to think.

What are your favorite ways of staying healthy?

Emotional Flashbacks: I Tend to Fight

Posted on by Astrid

I just read up on trauma-related symptoms and was flooded with emotional flashbacks. An emotional flashback is where you are reminded of a past traumatic event but don’t remember it in visual detail. Rather, you feel the emotions associated with the event. You then respond in a usually maladaptive way that is associated with your trauma.

According to Pete Walker, there are four types of trauma responses related to emotional flashbacks: fight, flight, freeze and fawn. I have yet to read up on them all in Walker’s book Complex PTSD: From Surviving to Thriving, but I think I most relate to fight, followed by freeze and fawn. Interestingly, in this book, Walker also discusses specific combinations of responses, such as the fight-fawn hybrid (I think that would be me).

I feel sad, because Walker calls the fight response, which is my most common first reaction, “narcissistic” and on his website relates it to being spoiled. I have yet to read up in his book on whether this is the only trauma that can elicit a fight response, as I was not usually spoiled. Or was I?

When discussing my upbringing with the psychologist who gave me my autism diagnosis back in 2017, after another psychologist had taken it away, I mentioned my parents not letting me develop my independence skills. That is, when I tried to develop independence skills, I was often left to my own resources and not consciously taught. Then as soon as I got frustrated (which I reckon is a natural response), my parents gave up and would do stuff for me. The psychologist called this simultaneous over- and underestimation.

I was rather frustrated with the fact that I was seen as having been underestimated, as this didn’t resonate with my feeling of chornic overwhelm. Also, it somehow feels like it’s a character flaw on my part that I got let off the hook, whereas I consider other forms of bad parenting that I endured to be my parents’ responsibility. Really though, ultimately, it’s my responsibility to heal.

Linking up with RDP #83: Remember.

Challenge: The Skill of Dialectics

Posted on by Astrid

“The best person you can become is yourself.” I once read this in an advert for a personality disorders treatment center. It seems so true, and yet it suggests that people with personality disorders are not being themselves. As if a personality disorder is somehow superimposed upon the otherwise healthy person. That’s probably not how it works.

I was reminded of this as I thought of my meeting with my mental health nurse today. I was very open about my thoughts regarding treatment and its effectiveness and my maybe wanting to stop it. The challenge, in this respect, is figuring out which aspects of myself I still want to improve on and which I want to accept as part of myself.

I clarified that I’m afraid treatment is always focused on making the patient more independent. That’s not a problem, but it is when practical independence comes at a cost to autonomy. I am and will always be multiply-disabled. No amount of mental health treatment will change that. My nurse agreed, but said that she doesn’t feel I’m at a point where I can accept myself and just live yet.

The biggest challenge in my life seems to be and always has been to find the right balance between apparent opposites. Between my intellectual capacity and my social-emotional disability. Between my wish for autonomy or self-determination and my need for support. Between my desire to progress and my desire to just be.

I remember several years ago checking out a dialectical behavior therapy self-help manual that started with the skill of dialectics, of finding the right balance between two opposites. This is such a cool skill. I think I’ll accept the challenge and work this skill again tonight.

I am joining RDP #63: Challenge with this post.