A Very Intense Day Today

Posted on by Astrid

Today was an intense day. I started it with a weigh-in. To my surprise, I had lost almost 2kg. Last week, I had gained 1kg compared to the week before, so I had decided to try to cut back on snacks. That lasted all of one day and then I was back to snacking as usual. I don’t really trust my scale, as it isn’t officially calibrated, but well, who cares? I feel pretty fit and healthy and at least remain within the same 2kg range.

At 11:30AM, I had a nurse practitioner’s appt. My new’ish assigned home staff attended it with me rather than my assigned day activities staff, who usually does. Yesterday, this staff had been my one-on-one too and we had discussed my frequent dissociation and switching. She asked me whether I wanted to talk about it to my nurse practitioner and at first I said yes. Then later in the evening, I got anxious and decided to E-mail my nurse practitioner. I explained about the frequent switching and flashbacks. I also expressed my concern that, if the alters take over too much, my team will resort to denying their reality and ultimately to denying my reality as a whole. Then I will have lost all the trust I’ve gained in my team so far.

I can’t remember the entire appt, but at one point, Jane popped forward. She is the one most in denial of my trauma-related symptoms and yet it seems like she’s always the first to pop out and reveal our being multiple to a professional. My staff had probably already met her, and I think so has my nurse practitioner, but not to this extent. Thankfully, neither one objected to her being openly out.

I started feeling depersonalized after Jane was back inside and it didn’t fully clear up till just about an hour ago. In the evening, it got particularly bad.

Then for whatever reason, Karin, one of our fourteen-year-olds, popped out and started talking about a high school memory. We were still partly in the here and now, as she apparently recognized our one-on-one. Thankfully, our one-on-one reassured Karin that she’s now safe and the memories are in the past. She also told us that our teachers and parents, while probably meaning well, didn’t really help us and that none of our issues is our fault. That still feels rather off. I mean, of course I didn’t choose to be blind, but my parents reminded me over and over again that my behavior was definitely a choice. They always saw (and maybe still see) me as one giant manipulator, not an autistic, multiply-disabled trauma survivor. And they’re not the only ones. If I’ve learned one thing in my nearly 35 years of existence, it’s that sooner or later, people will always come to the conclusion that I’m one giant manipulator.

Recovering From Autistic Burnout

Posted on by Astrid

Today, the prompt for Reena’s Exploration Challenge is one word: burnout. This word evokes so many thoughts, feelings and memories in me! After all, though I was never diagnosed as suffering with actual burnout, the reason is more that burnout isn’t a DSM-IV or DSM-5 diagnosis than my not having suffered it.

That is, I did indeed not suffer the classic shutdown-type burnout where people are too exhausted to function. Rather, my burnout was more of the meltdown type, where I got so irritable and dysregulated that I couldn’t function anymore.

In 2007, I suffered autistic burnout. This is an actual thing and is more and more recognized by autism professionals too. It involves an inability to function in daily life as a whole, not just work, due to the experience of being overloaded, being autistic in a neurotypical society.

I have shared my experience of landing in a mental crisis in 2007 many times before. I was at the time living independently (though with a lot of community support) and going to university. That all changed within a matter of days: on Tuesday, I was sitting an exam, while the following Saturday, I was a patient on the locked unit of a psychiatric hospital. First, while there, I had to stabilize. I had to get back into a normal sleep/wake rhythm and regain my will to live.

Once I was no longer nonfunctioning and suicidal, however, I had to get my life back on track. My social worker thought I could go into supported housing for autistic people. I, at first, thought so too. Until I saw all the criteria relating to independence, lack of challenging behavior, trainability, etc. That wasn’t going to work out.

To be quite fair, I never fully understood my actual level of functioning until sometime in 2020. I had wanted to prove myself for so long. I had worn so many masks that hid the real, messy truth of who I am. Consequently, I constantly overestimated myself and my abilities. So did the people around me. Until one day, in November of last year, I crashed again. I probably suffered another burnout. That was when my one-on-one support was started.

There still are voices in my head telling me I could, should in fact go back to my life of before my first burnout in 2007. Back to independent living and college. Otherwise, how can I claim recovery?

The thing is, people who experience work-related burnout, usually don’t go back to their exact jobs from before their burnout either, if to the same job at all. Why should I then go back to a life I hated from the get-go? I try to see recovery from burnout not in terms of recovering lost functioning, but in recovering lost pieces of myself.

Basic Mistrust

Posted on by Astrid

I have been compelled to read up on emotional and psychosocial development. One theory is Erik Erikson’s theory, which states that, at each different stage in life (from infancy to old age), a particular conflict is present. In infancy and early toddlerhood, this conflict is basic trust vs. mistrust.

I initially thought that this stage corresponds pretty much to the first adaptation phase in attachment theory, which takes place between birth and age six months. When I checked it though, it includes this stage as well as the first socialization phase, age six to eighteen months. This may be one reason why I relate strongly to basic mistrust even though, in attachment theory terms, I function in most areas consistent with the first socialization phase.

One thing I’m facing lately is a chronic feeling of anxiety and distrust. In my care plan, my emotional development is outlined and in the fear domain, I am said to function at an age comparable to somewhere between zero and eighteen months. This includes all of Erikson’s first stage of psychosocial development. By contrast, it encompasses both the first adaptation and first socialization phase of attachment development. The reason my development in this area isn’t pinpointed to either of these two phases, is that I experience both basic fear (consistent with the first adaptation phase) and strong separation anxiety (consistent with the first socialization phase). Apparently, a baby under six months cannot yet express separation anxiety.

I have little idea why I might experience such strong anxiety, as in, what in my early development contributed to it. I mean, my parents claim I didn’t have these issues until I started to lose my eyesight at age seven. Seven is another important age in both cognitive and psychosocial development, but I don’t think that one is particularly important in my life. The earlier stages seem to make far more sense to me.

Of course, I do know that I probably didn’t have optimal care in my early life. This isn’t anyone’s fault. I was, after all, born prematurely and spent the first three months of my life in hospital. Though my parents visited me often, I don’t think I could rely upon them for meeting my every basic need. After all, they cannot possibly have been in my proximity 24/7, like the mother of a typically-developing child usually is at least for the first few weeks to months. My nurses must’ve provided me feeding and comfort at least part of the time.

As for affection, I have absolutely no idea. NICU nurses aren’t likely to be able to provide any significant level of affection to a baby at all, but I guess my parents would’ve made up for that. I went into this when discussing mother as source and mother as place of attachment. The truth is, I honestly mostly rely on my current feelings to guide my ideas. I, after all, don’t have many early memories of affection. My first memory related to it is from age four or five and it involves my mother using a nickname for me that referred to her needing to be at my side all the time. Then again, most people don’t have many early memories at all and remembering is still a form of reconstruction. In other words, because I experience a lot of basic mistrust now as an adult, it is easier for me to remember the memories that point to this.

This post was inspired by Fandango’s one-word challenge (#FOWC), the word for today being “Basic”.

Good Enough

Posted on by Astrid

Today’s optional prompt word for #LifeThisWeek is “Good”. Denyse takes on a cynical approach to the word, which reminds me of the many degrees of being called “good” I experienced.

In my elementary school years, my parents were in a constant fight with the schools for the blind I attended about my educational needs and my potential. According to the school, I was a good enough student. That’s the literal translation of the words that appeared on my report card often. Sometimes, when I was better than average, just “Good” appeared.
My parents thought I ought to get some more recognition. They thought I was excellent, sublime, a genius.

My schools thought I should be going to their secondary school program, which at the highest level catered to average students. My parents believed I could do far better.

I doubt, to be very honest, that my teachers truly didn’t see that academically, I was above-average. At least some of my teachers must have seen this. However, socially and emotionally, I was significantly behind. This was probably the real reason my schools recommended I continue in special education. My parents disagreed. They felt that I would be overprotected and underestimated in special ed. They might’ve been right. We’ll never know, since my parents took me from educational psychologist to educational psychologist until they had the recommendation for mainstream high level secondary education in their hands.

What I do know, is that I ended up being overestimated and underprotected. My parents would love to deny this and blame the staff in independence training for essentially setting me up for long-term care. Agree to disagree. Then again, we’ll never know, because I didn’t go into independent living and on to university right out of high school.

Sometimes, I wish I was just the average, good enough student that some of my teachers saw me as. Then at least I wouldn’t have to face the enormous challenge of both a high IQ and an emotional level comparable in many ways to an 18-month-old child. Then, I might not be writing blog posts in English, but I also might not need 24-hour care.

Then again, I enjoy writing blog posts. I like my care facility. Life is good enough for me.

An F in Phys Ed

Posted on by Astrid

One of Mama Kat’s writing prompts for this week is whether you played sports as a child and if so, to share a memorable game. I never played sports outside of school. That is, I attended one gymnastics class with my sister and a friend of hers at around age eight. I didn’t enjoy it one bit, despite normally liking gymnastics in physical education classes.

I was, to put it plainly, horrible at sports. Any sports. While gymnastics was my favorite part of physical education, it was more because I hated team sports and athletics even more.

At the school for the blind I attended for grades four to six, I was always picked last. Not just because of my lack of athletic capacity, but also because I was the only girl in my class. I don’t blame my classmates though.

When I attended mainstream high school, my phys ed teacher was also my tutor. He was great at accommodating me up to a point. For example, he let me run with a buddy. Of course, I was the slowest runner of the entire class. Looking back, I like to blame my mild cerebral palsy, but I still struggle to figure out what is due to that and what is simply due to my being fat. Not that I was fat at the time, but I wasn’t skinny either.

In my second year in this school, I hadn’t had any failing grades until sometime in February. My classmates complained that I got it easier than them, because for example I’d get extra time on tests. Whether this motivated my phys ed teacher or not, I’ll never know. We had to do gymnastics, a particular swing on the rings. I couldn’t really see what everyone else did, but I tried my best. And failed. My teacher explained to my father that I might’ve done the best I could, but he couldn’t possibly justify giving me a passing grade.

Like I said, he was my tutor. He almost took pride in being the first to give me a failing grade that year. Except that he wasn’t. That same week, I’d gotten an F in Greek too. That one was definitely justified, as at the time I didn’t face any barriers to learning basic Greek that my classmates didn’t.

From the next year on, I started going to a gym instead of following regular PE classes. I, after all, would never be able to attain the level of physical ability required for higher secondary school sports. I continued to attend the gym regularly throughout high school and for the first several years after.

Mama’s Losin’ It

Places I and My Family Have Lived

Posted on by Astrid

Today, I once again looked to a book of journaling prompts for inspiration for a blog post. One of the prompts in the first chapter of Journal Writing Prompts for Child Abuse Survivors is to list all the places you’ve lived. There may not be any need to elaborate on them, but I am going to share my thoughts and feelings that come up. For this post, I’m just going to talk about the houses I lived in with my parents. Otherwise, this post is going to be way too long.

First up is my parental house in Rotterdam. My parents bought the house a year before I was born. To be quite honest, I have very few memories of this house, even though I lived there until I was nine. I do remember my and my sister’s bedroom, which had a bunk bed in it. My sister slept at the top and I slept at the bottom.

I don’t remember most other rooms in the house. I know my parents must have had a bedroom, but I can’t remember its location relative to the kids’ bedroom.

I do remember the garden. It was small, but still big enough to play in. It had swings and a sandpit. I loved to play here with my childhood friend Kim.

I also remember the neighborhood. I played in the “thick street”, a square bit of pavement between two blocks of houses. I also often went to the playground across the road from there. When I had lost some of my vision at around age eight, I felt too scared to cross the road.

Like I said, I lived here until I was nine. Then, my family and I moved to Apeldoorn. We moved to a quiet neighborhood. The house we moved into, had a large kitchen-diner and a living room downstairs. We called the living room the “library” because it housed my mother’s huge book collection. Upstairs where three bedrooms, two large and one very small. One was my parents’ bedroom. The small room was my mother’s office, while the other large bedroom was my father’s.

My sister and I each had a bedroom in the attic. I remember not wanting to have my own bedroom at first, probably because I was used to my sister’s company when going to sleep. I eventually grew to like it though. I had the same bed for all of the years I lived here, one of the original bunk beds. My sister claims I got hers and she got mine after the move.

The other two smaller rooms in the attic were a laundry room and a guest bedroom.

We had a large garden. The first summer we lived here, my paternal grandma gifted us a wooden play set that had swings and climbing equipment. I could be found on the swings many hours each dry day until I was at least fourteen.

During the first few years that I lived in this house, I loved exploring the neighborhood. It had at least four playgrounds within a five-minute walking distance from my home. I would often roam about trying to find new playgrounds farther and farther off. When I lost more of my vision at around age twelve, that mostly stopped. Besides, of course I was too old for playgrounds then. I still went to the nearby shopping center regularly, often getting lost on my way.

I generally really liked the house in Apeldoorn. When my parents were trying to sell it and my husband and I were looking for a home, my parents initially offered it for rent to us. We however had the provision that it’d go off the market for a while. Of course, this wasn’t really reasonable. My parents sold the house in December of 2013. I am glad in a way now that they did, as now I have no need to be reminded of the house and my childhood when I don’t want to be.

My Twelve-Year-Old Self Would Be Surprised

Posted on by Astrid

Today, Emilia of My Inner MishMash had a very interesting question of the day. She asks what twelve-year-old you would never believe about your current self. This is the perfect question to get me reflecting on how I saw my life at age twelve.

Honestly, there is nothing about my current life that would be so far off that my twelve-year-old self wouldn’t believe it. I mean, I alternated between seeing my adult self as a professor and seeing her as a care facility resident. That first image, I saw as the “good” one. I would be a linguistics or mathematics professor. Never mind that, at least here in the Netherlands, mathematics isn’t a suitable university major for a blind person.

That second image, I saw as the “bad” one. I have probably written before about the sixteen-year-old girl in the media in around 1997 or 1998, when I was eleven or twelve. She had a low IQ, but not so low that she’d fit in with intellectual disability services. She also had severe challenging behavior. The reason she was portrayed in the media, was the fact that she was being restrained and held in solitary confinement in an adolescent psychiatric hospital. I totally identified with this girl.

Of course, currently, I’m not being restrained or secluded. I have some experience of manual restraint and seclusion, but not to the extent this girl did.

This gets me to the part that would probably surprise my twelve-year-old self most about my life right now: that I am relatively happy. For what it’s worth, I totally thought that, if I had to be in long-term care as an adult, I would be utterly desperate.

Another thing that would’ve totally surprised twelve-year-old me, is that I’m married. In truth, it still surprises me at times that my husband is willing to share his life with me. Though as a teen, I imagined becoming a mother later, I never quite considered a partner in my life. Besides, being married doesn’t at all fit in with the “bad” image of myself as a care facility resident.

Lastly, like I commented on Emilia’s post, the one thing that my twelve-year-old self wouldn’t believe about me, is that I found my faith in God. After all, I was raised atheist and was at age twelve clueless about faith. My teachers at the Christian school for the blind made me participate in prayer, something I had a huge aversion to. Honestly, till this day I struggle to pray at set times of the day because it feels more like a ritual than an investment in my relationship with God.

What would surprise twelve-year-old you most about your life right now?

Five Years Ago #Write28Days

Posted on by Astrid

Welcome to day four in #Write28Days. Today, I am not going with the word prompt. It is “Make” and maybe I can make the prompt fit into my post somehow (pun intended). Not sure though. Instead, I picked one of Mama Kat’s Writer’s Workshop prompts. It asks us what, if we could give ourself a snapshot five years ago of what our life would be like now, it would look like and how we would’ve felt.

Five years ago, I still resided in the psychiatric hospital with the intention of leaving for my and my husband’s then home by my 30th birthday on June 27, 2016. I still trusted my mental health professionals to a degree and had at least some trust in my ability to live with my husband. The whole saga of my changing diagnosis, or diagnonsense as I called it, hadn’t happened yet.

I just checked my old blog for what I’d written in February of 2016. I admitted, in some posts, that I still struggled with the reality that I hadn’t fulfilled most of my childhood dreams and yet wasn’t a total failure, in that I’d be living with my husband. I didn’t use the word “failure”, but my writing certainly connotes that I should feel like a failure if I need residential care for the rest of my life. Which possiblity I held open to an extent, and which indeed came true.

I mean, I got kicked out of the psych hospital not by the summer of 2016, but by May of 2017. Then lived with my husband for nearly 2 1/2 years, until I was accepted into the care facility.

If I could give myself a snapshot of my life right now, it’d likely be of my room here at the care facility with my one-on-one staff in it. I might give myself an additional snapshot of my and my husband’s house in Lobith to convey that we’re still together.

Honestly, I have no idea how I’d have felt about these snapshots back then. I mean, four years ago is easier. Then I’d certainly have been elated at knowing I’d eventually end up in long-term care despite all the attempts my psych hospital staff took to prevent me getting the care I need. But in early 2016, I may not have seen this need.

Probably, the most likely emotion I’d have felt is mistrust. I mean, how could I possibly ever get the level of care I never even openly admitted I needed? I mean, I never asked for one-on-one, but got it anyway. How is it possible that people truly saw this? I can hardly believe it now, let alone five years ago.

Looking back at my life five years ago, however, makes me so intensely appreciative of the life I have now! I thank the Lord for sending my former support coordinator, the Center for Consultation and Expertise consultant and my current staff into my life, as well as the funding authority people in charge. Without these people, I honestly don’t know where I’d be right now.

Mama’s Losin’ It

New Normal

Posted on by Astrid

Earlier today, Stevie Turner wrote a great piece on adjusting to the new normal of serious illness. In her case, it’s cancer. I have so far been able to avoid serious physical illness, but I get the idea of adjusting to a “new normal”.

In 2007, as regular readers may know, I suffered a serious mental health crisis. It was probably autistic burnout, though it got various labels over the years. I was 21 at the time and attending university and living on my own.

In the early months of my psychiatric hospital stay that followed the crisis, I was convinced I could go back to college, university or work and living more or less independently if I just had a little more support. I rejected the first place offered to me because I wouldn’t be allowed to cook in my own apartment. This, looking back, is ridiculous! After all, now, thirteen years later, I live in a group home with 24-hour care. I cannot cook, clean or even do some personal care tasks without help.

Now to be honest, I at the time didn’t have a realistic picture of what living in my own apartment in supported housing would be like. The training home I went to before living independently, had a 1:4 staff/client ratio during most of the day. That’s pretty high and it allowed for staff to help with most household tasks. If I went into supported housing in my own apartment, I’d be expected to clean it all by myself. The fact that I wouldn’t be allowed to cook, was understandable, as there wouldn’t be the staff to supervise me.

Then again, I thought I could handle a low staff/client ratio. It was 1:7 on week days at the resocialization ward and 1:14 on week-ends. I did okay with this. Now, not so much. The staff/client ratio here is 1:6 at the least and I get one-on-one for several hours during the day.

I often look back at myself before my crisis. When I was eighteen, I attended mainstream high school despite being blind. The autism or other issues hadn’t even been diagnosed yet. I coped with classrooms of 30’ish students with just one teacher. Sure, I had meltdowns multiple times a week, sometimes multiple times a day, but I somehow survived. Now, I can barely handle having my coffee in the living room without my one-on-one present to calm me if I start melting down. Oh my, this feels sick. I feel shame admitting this. Yet it’s my new normal. Whether I’m just lazy and manipulative and unwilling to be independent or I’m genuinely unable, it’s the way it is.

I often feel sad when I am reminded of my old life. I often dream that I go back to university. I most likely never will.

That being said, I’m also grateful for what I do have. I am forever grateful that my staff and behavior specialist saw the need for one-on-one. I am grateful whenever I can do a small activity, like this morning I made clay punch-out figures. Back in the psych hospital, I often couldn’t blog even once a week. Now I blog almost everyday.

The most frustrating aspect of my “new normal” is not knowing why. I constantly second-guess myself, wondering if I’m truly such a terribly manipulative attention-seeker. That thought is scary. Worse yet is the fear that this might be some type of neurological thing, that I might actually be deteriorating. There is apparently no reason to think this, but it’s still on my mind. Then again, it is what it is and I’ve got to deal with it.

When I Was Fifteen

Posted on by Astrid

One of Mama Kat’s writer’s workshop prompts for this week is to explain how a parent or sibling would’ve described you at the age of fifteen. What an interesting thing that Mama Kat should mention age fifteen!

I turned fifteen in June of 2001. By August, looking back, I was close to insane mentally. This was the summer when I first realized I had alters inside of me, although I didn’t know what they were at the time. I just heard some type of voices that were and at the same time weren’t mine.

Neither my parents nor my younger sister knew this at the time. Still, they did realize something was up, if for no other reason, then because I didn’t care about school. I had always been a pretty studious kind of child, but this changed by November or December of 2001.

In addition, I was a rather angry, moody child. I had suffered from depression on and off since age seven or so, but it was particularly bad at age fifteen. I even made suicide plans several times during that year. My parents, being the type to dismiss mental health issues, felt I was just attention-seeking, of course.

My life turned around in a sort of positive way a few weeks before my sixteenth birthday, although no-one saw either the change or how positive it was at that point. On June 16, 2002, my father called me autistic as an insult. This led me to search the Internet for autism and to discover I may be on the spectrum myself. Although it’d take nearly five more years before I was diagnosed, in part because my parents and teachers didn’t believe me, I see this as a pivotal point in my life.

The day after this, June 17, I finally disclosed to my teacher what had been bothering me over the past year. I sugarcoated it a little, not mentioning the voices or suicidality or autism for that matter. I did tell him I was struggling with being blind in a mainstream school and that I realized I had been less than good of a student lately.

My father, at the time, worked at my school. My teacher told him that I had disclosed something to him, but he refused to tell my father what it was. This led to a really traumatic experience, because my parents demanded to know too and they weren’t kind about it at all. I am pretty sure they just tried to gain fuel for their idea that I was one giant attention-seeker.

Many years later, my parents used many of my struggles at age fifteen to “prove” this very point. I can see their perspective, sort of. Thankfully though, my current professionals don’t go along with it.

Mama’s Losin’ It