Angry and Dissatisfied

Today, I feel flooded with emotional flashbacks that I’m not 100% sure about what triggered them or even what they are about. To give myself some insight, I picked up the book Journal Writing Prompts for Child Abuse Survivors again. Somehow, the prompts about anger appealed to me.

Growing up, I was always described as “too quick to anger”. There is some truth to this, in that I have and always had an extremely low level of distress tolerance.

My parents would react to this with resentment, but they’d generally solve my problems anyway. This at one point was described as having low expectations of me. When the psychologist who did my latest autism assessment, said that, I was triggered. After all, if my parents had expected me to be able to work stuff out myself, would that have been any better? I understand all about letting babies “cry it out” and I’m not a fan of it. I don’t have a clue whether I was left to “cry it out” a lot. I think so, as I was in the hospital for the first three months of my life and I don’t expect the nurses to have attended to each baby’s every cry. As such, even if my parents did attend to my every cry for attention, I must’ve been allowed to learn some self-regulation through “crying it out”.

My parents weren’t the most patient people in the world. At one point, my father explained to me that a family is like a business, in that it has to be run efficiently. As such, I can understand why my parents rarely let me work stuff out on my own. I also understand why they resented helping me.

Growing up though, my poor distress tolerance skills were seen as mere anger and oppositionality. I’m not sure why people perceived me as always angry. They weren’t just my parents, after all. Maybe I am quick to anger. I don’t know, but to be honest I think distress is different from anger.

When I became an adult and was admitted to the psych hospital, my nursing diagnosis at least off the record was “angry and dissatisfied”. Again, I’m pretty sure the staff confused distress with dissatisfaction. Distress is an inability to cope. Dissatisfaction is an unwillingness to accept the situation. I was perfectly willing to be discharged back into independent living if that was what was deemed necessary, but I didn’t promise I’d cope. This was considered blackmail.

Now that I’m in long-term care, my staff no longer see me as angry or dissatisfied a lot. Even so, I haven’t changed much. I still swear and scream when my computer or iPhone won’t cooperate. Staff do help me now, but they don’t resent it anymore. This has also allowed me to practise asking for help in more productive, proactive ways, which, in turn, helps me become frustrated less easily. I like it that way.

Things That Made Me Smile (March 22, 2021) #WeeklySmile

Hi all on this lovely Monday! I am so excited to have discovered the Weekly Smile. This is, as the name suggests, a weekly blog event in which participants share what made them smile. Having discovered this meme itself is a reason to smile. I love being positive! Let me share what else made me smile.

First up is my new assigned staff’s kindness. Like I said in my #WeekendCoffeeShare post on Friday, I have a new assigned staff. She is calm, kind and very dedicated to her job. I initially worried she might get too attached and then have to withdraw as my assigned staff. She reassured me though that she maintains her professionalism.

Yesterday, I was feeling a bit triggered. The student staff, with whom I am not fully comfortable yet, had been my one-on-one for the evening. In addition, a male staff may get to work in my home soon. He seems kind enough, but still, it’s an adjustment. All this led me to feeling a bit stressed out when I was going to bed. Thankfully, my new assigned staff comforted me.

After the staff had taken me to bed, I pressed the call button a few times for the staff to come back, but she didn’t mind. She has this little rhyme she tells me each time she puts me to bed. It goes something like this:
Sleep well,
Head on the pillow,
Ass in the straw,
Then Astrid sleeps soon.

This time, the staff adjusted the rhyme to address not just me, but all of the voices (alters) inside my head. That definitely made me smile.

Second is my sensory room experience that I was able to create in my own bedroom. First, I found a calming essential oil blend to put in my diffuser. Then, I found the album on Spotify that I used to have in the CD player in the day center’s sensory room. It is called Songbird Symphony. Lastly, I crawled under my weighted blanket and had my staff cover me with the ball-filled blanket that came with the sensory bed from our makeshift sensory room. In total, I had at least 20kg of weighted blankets on top of me. This probably isn’t healthy for actual sleeping, so I threw off the ball blanket before actually drifting off to sleep. However, the feeling before this was so peaceful. It reminded me of Temple Grandin’s “hug machine”. Reading about that introduced to me the comforting effect of deep pressure years before I felt able to explore my own sensory experiences. Now, I totally appreciate my care staff, physical therapist and the manager for having helped me find my sensory comfort.

What made you smile this past week?

Learning Never Stops #Write28Days

Okay, here’s my post for #Write28Days for today. I know I already wrote a post today and at first I wasn’t inspired to write another. The prompt word for today is “Learn”. This at first didn’t inspire me, until I read Carrie Ann’s response. It completely resonates with me!

As regular readers of my blog will know, I did college for one year in 2006-2007, doing an orientation in psychological and social studies. I only passed the year because the communication skills instructor had given me a passing grade on the condition that I never continue into this field. I was diagnosed with autism a few weeks before the dreaded communication skills exam. Now I did poorly on the exam and don’t really want to use autism as an excuse. Other autistics, in fact, can become social workers or psychologists or work in other such fields the program would be training me for. But I cannot.

Then I transferred to university to become a linguistics major, only to drop out two months in. I took a few psychology classes at Open University in 2009, of course skipping the practice ones and doing only theoretical ones. I think that instructor back in 2007 was right, after all.

Despite the fact that I haven’t been in formal education in over eleven years, I however still learn. At times, it feels like I don’t. I mean, I am not in any type of training or education.

The last time I was in formal training, was to learn to use the iPhone in 2017. I fully expected I would no longer be capable, but thankfully I was.

And now, having become a Christian within the last two months, I am trying to learn all about the faith and memorize scripture. It’s hard, but I trust that with God’s help, it is possible.

Carrie Ann truly motivates me to keep trying to learn. I really want to learn to write better. I also still want to take some free classes. I mean, ideally I’d sign up for some university courses in education or psychology, but these usually require a prior college degree. Maybe I can use FutureLearn or the like. In any case, I really hope that, like Carrie Ann says, learning never grows old even when I do.

New Normal

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

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

Sky Is the Limit #SoCS

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “Sky’s the limit”. I was immediately reminded of a story in Stephanie Kaars’ book Speciale mama’s (Special Mommies), in which this phrase inspired a mother to challenge her son, Sky, who had severe cerebral palsy, beyond his apparent limits.

It then made me think of how challenging someone beyond their apparent limits, doesn’t mean expecting them to be “normal”. I mean, the phrase which inspired the mother says that her son is the limit. In other words, each child or adult is their own limit of what they can achieve and this should not be defined by the person’s characteristics, such as disabilities.

I don’t have as severe a disability as Sky. I mean, yes, of course blindness is seen as a “major” disability for statistical purposes, but it alone doesn’t qualify anyone for long-term care. Severe cerebral palsy does. That being said, I do have a significant combination of disabilities: blindness, autism and mild CP.

I don’t think these disabilities, or rather the stereotyped perception others have about them, limits me. I mean, of course my disabilities impair me, but that’s totally okay. I am not limited by others’ ideas of what a blind person (as that’s my most visible disability) can or cannot do. Because, you know, even though I am in long-term care with the highest care profile in the visually impaired category, people still sometimes say I’m quite capable for a blind person. No, I’m not.

I am also reminded of the current slogan for the National Federation of the Blind: “I can live the life I want; blindness doesn’t hold me back.” The old slogan was: “With proper training and opportunity, an average blind person can do a job as well as an average sighted person.” This may or may not be true for the hypothetical average blind person, but it certainly isn’t true for me.

Is the new slogan? Yes, I think so. I could really go to university if I pushed harder, maybe. Maybe not, I’m not sure. However, I have no desire to go to university anymore. Similarly, I wasn’t dying living semi-independently. Well, I almost was, if you count the two medication overdoses I took, but those weren’t due to blindness. Then again, I am happy to live in my current care facility. I may still have things I want to improve on, but I for the most part do live the life I want.

In Crisis Yet Again #Blogtober20

Okay, this may not be the most appropriate post for #Blogtober20. After all, the prompt for today is “relax”. It is also World Mental Health Day. Most people would use this to advocate for better mental health services, or to share tips on coping with mental health issues. Tonight, I’m too stressed out to do either. In fact, this is just going to be a raw post on my having been in crisis tonight – and not having fully recovered yet as I write this, in fact.

I was on edge all day. By mid-morning, I started feeling irritable, but it was still manageable. When it was time for lunch, a different staff from the one assigned to my side of the home came to eat with us. We also didn’t get the usual weekend lunch stuff, such as sausages, pancakes or soup. We did get a baguette with cream cheese on it. It was okay. IN fact, I much prefer that to our weekday lunches. I don’t think it’s even the fact that I didn’t get the treat I wanted, that set me off, but the fact that so much was different about the lunch. Thankfully, after being on the verge of a meltdown for a bit, I was able to calm down.

Then in the evening, I spiraled into crisis. I don’t even know why honestly. I was getting very irritable about the staff having the TV on even though the volume was turned to low. Within the next fifteen minutes or so, I landed in a full-blown meltdown that seemed to last forever. I eventually asked the staff to fetch me a PRN lorazepam, but then somehow got it into my mind to climb over the balcony railing. I didn’t, but the mere fact that I was standing on my balcony on bare feet in the rain and disclosed my thoughts, worried the staff.

I was near a staff all the time until I had to go to bed at 10:15PM because the evening staff were leaving. They did remove the knob on my balcony door, so that for now I cannot go on there. I gave them permission for this, for clarity’s sake.

The lorazepam has started to kick in, but I’m still pretty tense. I must say that I am completely in awe of how my staff handle my challenging behavior too. It must be hard having a mentally disturbed person on an intellectual disability unit. In psychiatric care, they’d probably have sent me for a time-out off the ward. After all, psychiatric professionals commonly see me as a borderline case. I’m not sure my current place is the most suitable for me, but the staff definitely are.

#Blogtober20

The Kindness of Strangers

Okay, it’s past 2:30AM and I just said I wasn’t going to blog right now, but CrunchityFrog’s prompt for today (well, yesterday) has me thinking. This is supposed to be a daily prompt thing, so I might join in more often. Anyway, the prompt is to write about the kindness of strangers.

I’ve probably written many times already about overbearing, intrusive strangers. Particularly when I was a teen, I didn’t realize that my autistic behavior (of which I was unaware that it was autistic) combined with my blindness often caused people concern. I am more appreciative of people’s attempts, even awkward ones, to help now. That probably changed on the evening of November 2, 2007.

Okay, I’ve shared the story of my mental crisis probably more often than anyone cares to know. Today I’d like to focus on the kindness of the people who helped me stay alive and safe.

As regular readers of my blog will know, I was in a suicidal crisis that evening. I had left the training home I was a former resident of and had hoped to find safety in, because I was told the staff had no responsibility for me and I was to leave.

I took the bus to the city’s train station, talking into my former care coordinator’s voicemail. I told her I was going to take my life that night. I was completely unaware that people could hear me until a woman across the aisle from me started to talk to me. She told me that the bus driver had heard me, which initially only caused greater panic. She kept saying over and over again that he was getting help for me. (“Help”, of course, came in the form of the police, as is customary here in the Netherlands if someone’s safety is in question.) I was in utter shock, constantly crying and very overwhelmed. I am forever grateful for this woman’s kindness. And of course for the bus driver’s. It most likely, after all, wasn’t within his duty to report his concerns to the police.

Looking back, I realize I rightfully worried random people on the streets many times before and they were kind enough to help. Even if “help” meant to call the police. My parents often felt that people were just stupid, assuming that a blind person shouldn’t be traveling independently. Some were, indeed, but in some cases my parents were stupid, assuming that I was just blind.

If I Could Turn Back Time… #Blogtober20

Today’s prompt for #Blogtober20 is “If I Could Turn Back Time”. I think we all would do some things in our past differently if we could. I certainly would.

I mean, when I was in the psych hospital from 2007-2017, I regretted almost every step I took or didn’t take. My last psychologist was right in a way that so many places to live had passed that I’d turned down. I had turned down a shelted living place for the mentally ill, a workhome for autistics, a training home for autistics, etc. They were not suitable places for me and I completely understand I decided not to take the step. However, I particularly completely regret the step I did take to move to that last psych ward in 2013. Most of the places I’d turned down, seemed more suitable in hindsight than that last unit.

Still, now that I’m in a suitable place, I can see why the things happened the way they did and I made the choices I made. None of the places offered to me back in those early years in the psych hospital were as suitable as my current care facility is.

For the most part, this boils down to them being psychiatric living and/or treatment facilities rather than those serving people with developmental disability. You see, here in the Netherlands, autism is seen as a psychiatric condition if you have an IQ above 85. And in case it isn’t clear, the care approaches of psychiatry and developmental disability differ significantly. In particular, all psychiatric facilities are aimed at people developing their independence, or as they call it “rehabilitation”. I find this particularly unsuitable an approach to me.

Looking back, I maybe should have accepted the very first placement offered to me: a treatment unit and independence training home for autistics. Maybe the staff would’ve recognized my needs there. Or maybe not. Maybe I should’ve gone to the workhome. At the workhome for autistics, the staff did understand I needed more support than they could offer. They tried to help me and my staff find another place for me but came up with a facility for people with intellectual disability. The staff at the psych unit at the time were very understanding of my needs, but they still felt an intellectual disability place wouldn’t be suitable. You all know that I beg to differ.

To make a long story short, I’ve had quite a few regrets, but in the end, my life is good the way it is now. And that’s what counts!

#Blogtober20

This Is Me: Beyond the Labels #Blogtober20

A few days ago, I discovered Blogtober, a month-long event aimed at bloggers writing a post everyday during the month. There are prompts for each day of the month. They’re based on song titles, but you can do whatever you want. You don’t even have to follow the prompts! The first prompt is “This Is Me”.

So, who am I? When introducing myself, I tend to focus heavily on my labels. I tend to say that I’m blind and autistic and that I have mild cerebral palsy. I tend to say that I live in a care facility. I tend to say that I don’t work, but do day activities at my facility. Then again, are these the things that define me?

I could also be focusing on my passions. I am a blogger. I love to read memoirs and young adult fiction. I love to make soap and other bath and body care products. I am interested in aromatherapy. I am passionate about mental health and disability rights.

These are more “me” than my disabilities, but they’re still labels. Who I am at the core is not a blind or autistic person, or a blogger even.

Still, it is hard to define myself beyond the labels. Here are, however, a few things I think make me me.


  • I am open to new experiences. For example, I love to discover new hobbies. I am also open-minded to differences in people’s identity.

  • I am passionate. When I have an idea in mind, I can truly focus on it for a while. This means I can really be enthusiastic, but it also means I tend to perseverate.

  • I am sensitive, both to emotions and to physical stimuli. This may or may not be a positive characteristic, depending on how much I can handle on a given day.

  • I am intelligent. This is often the first positive quality people mention about me and I tend to hate that. After all, my IQ was often used to show that I should be able to solve my problems in other areas. Now that I am in an environment that doesn’t judge people by their IQ – I live with people with severe to profound intellectual disability -, I tend to appreciate my intelligence somewhat more.

  • I am a go-getter. Some people would disagree, because I have very poor distress tolerance and because I haven’t achieved their goals for me. They see the fact that I’m in a care facility and not working as a sign that I’ve given up. I haven’t. I have just focused on my own true needs and desires.

What are some things that make you uniquely you?

#Blogtober20