Mutism or Manipulation?

When I was a teen, I’d often go mute whenever certain personal topics of discussion came up. My mental health was such a topic. Much as I wanted to speak, my mouth wouldn’t form the words I wanted to tell my teachers or other people who intended to help me.

Even though I felt intensely anxious, my silence was commonly viewed as an act of rebellion. A way of manipulating those around me into, well, I honestly don’t know what.

When my parents and high school tutor had finally agreed that I needed professional counseling – or rather, my tutor had convinced my parents of the need, I assume -, my tutor informed me that the counselor had to meet certain very specific requirements. He or she needed to know blindness, because, well, I’m blind. The second requirement, I can’t remember, but the third was that he or she had to be exceptionally intelligent. The reason for that one was the fact that I, too, was supposedly extremely intelligent. If the counselor wasn’t smart enough, my tutor explained up front, I’d outsmart them with my manipulation. By this, he meant my so-called refusal to speak.

To this day, I am still unsure as to what made him think my silence was an act of willful defiance. Of course, everyone manipulates others at times, but I am pretty sure my mutism wasn’t – still isn’t – part of it.


This post was written for today’s Word of the Day Challenge, for which the prompt is “silence”, as well as E.M.’s RWP, which is “rebellion”.

Precious Memories of My Father

Hi everyone. Today in her Sunday Poser, Sadje asks us to share our most precious memory of our father or the father figure in our life.

My father was a homemaker and my and my sister’s primary caretaker when we were children. As such, he, rather than my mother, was the one I’d see when I came home from school.

As a child, I took very much after my father, but now I have very mixed feelings about our relationship. My father is intelligent and he knows it. He also knows that I am intelligent and he feels that this somehow negates all my problems. In his opinion, all people who disagree with him, particularly those in the helping professions, are stupid.

Because my father and I are both intelligent, my father did encourage my cognitive development from an early age. This is evident in my different response to my parents when prompting me, for example. There’s this Dutch nursery rhyme that goes: “One, two, three, four, paper hat, paper hat.” Whenever my mother chanted: “One, two, three, four…”, I’d reply with “paper hat”. When my father chanted the same though, I’d reply with “five!”.

this is not a direct memory I have of my father though, as I was too young to form actual, verbal memories when this happened. I do remember, however, my father teaching me math when I was about seven. He would show me square calculation by using computer chips that were square-shaped. He’d lay them in a row of, say, three, then lay them in a square of three by three and explain that this is a square calculation. (The Dutch word for the square calculation and the shape isn’t the same, so I had to follow an extra step.) Similarly, he’d explain squareroots by doing the reverse.

We would also spend long evenings looking at his world atlas to see where different countries and other geographic areas were located. I still had enough vision to, with some difficulty, follow his finger along the maps.

When I got older, I had to catch up on reading, as this was one of my weaker subjects, mostly because I didn’t like the fact that I had to read Braille. My father encouraged me, well more like forced me, to do extra reading at home. One memory I have is of me reading Alice’s Adventures in Wonderland in Dutch when I was about eleven. To show me that he, too, was taking up a challenge, he read the book in its original English. I am currently listening to the audiobook in English on Apple Books.

In short, my father nurtured my intellectual side. Currently, I much more value my creative side, which my mother nurtured (a little). Still, my memories of doing academics with my father are mostly good.

#WeekendCoffeeShare (April 2, 2022)

Hi everyone on this cold Saturday evening. I am joining #WeekendCoffeeShare today. I’m afraid I just have water or maybe the staff has put some soft drinks in the fridge by now. My favorite soft drink, Dubbelfrisss, wasn’t cold when I had my evening drink about an hour ago. Anyway, let’s have a chat.

If we were having coffee, I’d tell you that I finally have been crafting again today after a week of just watching crafty videos and doing nothing creative at all. That is, I’ve been blogging, which counts too, of course, but I haven’t touched my polymer clay or jewelry-making supplies or macrame cords or anything.

Today, I finally did a couple of pieces for the mobile for the baby my sister is expecting. I also finished the polymer clay hedgehog I’d started on about a month ago. At first, I was disappointed, because I’d used up all of a particular color for its body and now it was nowhere to be found, so I couldn’t do the ears in the same color. Turns out real hedgehogs also have slightly differently colored ears than their bodies. Besides, I never really meant to be doing a fully realistic sculpture anyway (I can’t).

If we were having coffee, I’d share that the rest of the week was quite meh. I’ve been having tons of plans in my head, but no ability to actually put them into action. Today, I also experienced a ton of flashbacks and internal chaos. Seriously, the discrepancy between my intellectual ability and my emotional immaturity is really getting at me. I find that I can intellectually think of a lot of things that emotionally I cannot handle at all. I’m not sure if this makes sense.

If we were having coffee, I’d tell you that I may want to research an autism support method by Colette de Bruin. My assigned home support staff pointed it out to me and said she’s pretty much using the method on me already, but I may benefit from learning about it myself.

If we were having coffee, I’d share that I am very happy with the latest iOS update. I finally was able to do some reading again on my iPhone yesterday, since the update fixed a bug that caused my Braille display to become pretty unresponsive. I usually read with just my Braille display, as I don’t like VoiceOver’s synthetic speech for that.

If we were having coffee, lastly I’d tell you that I have a quiet weekend, because my husband isn’t coming over and I have no other plans. Next week though is going to be busy, especially the weekend. I am going to the nationwide cerebral palsy day with my mother-in-law. I will be attending a workshop on aging with CP in the morning, which I am really looking forward to. In the afternoon, I’ll be attending a yoga class. I may not be able to write a coffee share post then, especially since I’m also supposed to stay up-to-date with the #AtoZChallenge. I’ll be certain to write about it though.

How have you been?

Five Things I Take for Granted #5Things

Yesterday, DrTanya’s topic for the #5Things challenge was things you (sometimes) take for granted. I realize I take a lot of things for granted that I really shouldn’t. Here are just five.

1. My intelligence. I don’t take it as much for granted as I used to when in school, but i still feel that I pretty much consider my high IQ a given. Not only that, but I usually find that I’m surprised when others aren’t as intellectually capable as I am. Of course, I don’t mean my fellow clients at the care facility. In fact, they have taught me quite a lesson in humility.

2. My access to medical care. I don’t take my access to long-term care for granted, because that was a fight, but my basic health insurance coverage, I certainly do take for granted. Of course, it is mandatory here in the Netherlands and even those who don’t pay their premiums can’t be refused insurance for at least six months while the insurance company tries to sort things out with them.

3. A roof over my head. I’ve never been without shelter, although in a sense I’ve often felt “homeless”. In the psychiatric hospital, I knew several ppatients who had no home other than the hospital and who were regularly suspended from the ward into the homeless shelter. In this sense, it is really surprising that I never even considered this would happen to me, since I too for several years had no home other than the hospital. I think this signals how secure I felt, in a sense, at the ward I resided at back then.

4. Electricity. I never had to pay my own electricity bills, at least not directly. I mean, even when my husband and I lived together, my husband paid the electricity bills. As a result, I’m hardly aware of how much energy really costs. My husband did tell me how well we did compared to other households and we were always relatively frugal. Even so, it all seems a bit abstract to me.

5. Access to a computer. I don’t take Internet access for granted, but access to a computer, I certainly do. Even in my early days at the locked psychiatric ward, I had my laptop with me and there was no way anyone could take it from me, regardless of what the rules said about only certain electronics being permitted. Thankfully, my nursing staff did understand.

What things do you take for granted?

Ten Things I Love About Myself

I love journaling prompts and positive challenges. These are combined into the book 200+ Journal Prompts for the Mind, Body and Soul by Riley Reigns. One of her prompts on the topic of self-love is to list ten things you love about yourself. Of course, it shouldn’t require a book of journaling prompts to come up with this idea, but oh well. I am going to take this challenge today and try to take it to the next level by challenging myself not to follow each statement with a “but…”. Here goes.

1. My sense of humor. I particularly love wordplay and verbal jokes, most with a dark theme. I remember, when I was first admitted to the psych hospital, cracking jokes about the difference between the patients and staff in a mental ward (“the patients get better and leave”). I mean, literally during my first days.

2. My intelligence and craving for knowledge. I love to collect facts and information and this I consider a true asset.

3. My perseverance. I am not one to easily give in and ask for help before having tried something myself first. Particularly when I’ve set my mind on accomplishing something, I’ll really go for it. I can also really focus my mind on a topic of my interest.

4. My honesty. I am open-minded, but if I don’t like something, I’ll be truthful about it. I don’t sugarcoat my opinions.

5. My open-mindedness. I consider myself slightly left-leaning politically and a progressive Christian, but am open to people from all walks of life. Even though I am bluntly honest sometimes, I respect everyone who respects other humans.

6. My sensitivity. I am easily touched by the beauty and sadness around me. This allows me to connect to others on a deeper level than I would otherwise be able to and to experience the world more richly.

7. My ability to express myself. I find that both creatively and verbally, I am able to be very open about my experiences and inner world.

8. My generosity. I am not sure that’s the right word. What I mean is the fact that I find joy in making my own gifts for people and especially thinking about what they’ll enjoy. I love it when I can make them smile.

9. My strong-willedness. This allows me to stand up for what I believe in and for what I want even if it is outside of the norm.

10. My resilience. Even though I’m prone to depression, I always find a will to continue fighting.

What do you love about yourself?

Linking up with #LifeThisWeek and Hello Monday.

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

Something I Struggle With

A few weeks ago, Marquessa over at The Next Chapter started a writing challenge to get herself motivated to write everyday. Yesterday, I saw that Cyranny had joined in. Cyranny started with the first prompt. That one didn’t appeal to me, so I will go to the second. It is to share something you struggle with.

Regular readers may be able to guess what I’m going to share. It wasn’t the first thing that came to mind, but I got inspired by Marquessa’s post. She shared that she struggles with being called “pretty”. She then goes on to say that brains matter more to her than beauty. Well, I wouldn’t exactly say I’m the opposite, but I do struggle with being called “intelligent”.

As a child, I was often called intelligent. My parents loved bragging about my so-called genius. After I had an IQ test at age twelve, this became even worse. The IQ test, though not the first one administered to me, was the first one about which the assessor actually told my parents the exact IQ outcome. My performance IQ can’t be measured because I’m blind, but my verbal IQ was identified as being 154 on the Wechsler scale. This means I was supposedly within the highly gifted range.

As a preteen and early teen, I didn’t mind my parents bragging about this three-digit number as much. I was proud that, according to my mother, I had the same IQ as my father. Now the only time my father had an IQ test administered, he at least told me that was in the pub with a psychologist friend and he was rather drunk. I’m assuming his real IQ may be higher.

As I grew older though, my apparent high IQ more and more stood in the way of my being myself. It was frequently used by my parents and professionals to “prove” that I should be capable of solving my own problems in social situations. This got me interested in the concept of giftedness as asynchronous development. Later, I was diagnosed with autism. Still, my parents reasoned that I was just extremely intelligent.

The reason I struggle greatly with being called “intelligent” is the assumption that I am smart enough to solve non-intellectual problems. This may be so in most gifted people – I think I remember recent research disproves the theory of asynchronous development -, but it isn’t the case for me. Like I mentioned a few weeks ago, my emotional level is equivalent to someone approximately 18 months of age.

Last year, my IQ was used against me to deny me long-term care. I mean, due to my multiple disabilities and low emotional functioning level, I do best in a care setting normally catering towards severely intellectually disabled people. Because of my IQ though, I can’t get funding based on developmental disability. I am lucky that I’m blind in this respect, because I ultimately did get funding based on that.

Contrary to Marquessa, I do not struggle with compliments about my intelligence because I don’t agree with them. I mean, the IQ test I took at age twelve is rather outdated now and I scored much lower when I took another one in 2017. However, I still know I’m indeed intelligent. That being said, that’s not all I am. In the future, I’d like to be able to take pride in my intellectual abilities without them triggering the fear that I’ll need to be good at other things too.

Carol and Jane

This week’s Reena’s Exploration Challenge is all about describing the interactions between (your) thinking brain and feeling brain as if they’re characters, perspectives or mindsets. In the theory of dissociative identity disorder, alters are divided into two categories: apparently normal parts (ANPs) and emotional parts (EPs). Some theorists refer to them as Daily Living and Trauma Fixated parts instead. Additionally, I have experience with dialectical behavior therapy, which has the concepts of rational and emotional mind and Wise Mind as the goal to integrate the two.

I don’t believe in the rigid ANP/EP divide and the alters I’m going to describe in the piece below, would most likely both be seen as EPs, even though they’re on opposite ends of a spectrum. You see, one of the main triggers for identity confusion for me is the inability to integrate my low functioning level with regards to my social and emotional development with my at least somewhat above-average verbal IQ. In this sense, Carol and Jane do represent thinking brain and feeling brain.

Yesterday I struggled. I got an official reminder from local taxes from when my husband and I still lived together in the tiny village. An official reminder means they’d previously sent out another type of reminder that doesn’t come with extra costs. This one did come with extra costs and the next step, if I don’t pay, would be a debt collector’s visit. I don’t know why the reminder was only sent to my My Government inbox and not to my husband’s and I didn’t understand the reminder. I texted my husband to ask him for help. By this time, Carol, the alter who is very emotionally immature and vulnerable, was already getting upset. Why don’t I just go under financial management and never bother with money again?

My husband was a little annoyed that I shoved this task onto his plate. For this reason, Jane, who wants to be the intelligent, successful, self-reliant one, said: “Okay, I’ll solve it.” Carol was still prominently present in my mind and she has difficulty thinking clearly. In the end, I paid off the tax debt, but put the wrong identification number in the Comments field. This means the tax agency won’t be able to identify me as the debtor, so it may mean I lost the money. It was €160.

From there on, Carol took full control of my mind. I cried my eyes out and really wished I could crawl under the covers, get a guardian, be supported in the care facility and never worry about difficult decisions again. I didn’t even feel like seeing my husband, as Carol feels too inadequate for marriage.

Ultimately, the situation got sorted (hopefully). My husband sent out an E-mail to the tax agency asking them to either process my payment with the wrong number or return it to me so I can submit it again. Still, this whole situation has us (as in, me with all my parts) truly triggered. It’s a sad reality that each time, I am confronted with the disconnect between my good intellectual functioning and my poor emotional functioning.

The Friday Four

I am struggling a lot. I got some really bad news, but I cannot share it publicly at this point. This has caused me a lot of stress, but it did get me to revive my offline journal, which I keep in an app called Dyrii on my iPhone. I have the app on my Mac too, but haven’t yet fully figured it out on there.

That being said, my not being able to share what’s on my mind publicly, did keep me from writing on this blog at all. To get myself back into the writing habit, I am participating in A Guy Called Bloke’s Friday Four. I get the impression that this is the last installment in the series for now, so I’m rather late to the party. I like the questions though.

1] If you are in a bad mood, do you prefer to be left alone or have someone to cheer you up?
I prefer to be with someone to talk to and for them to cheer me up, but I often act like I prefer to be left alone. I tend to withdraw when depressed.

2] What’s the one thing that people always misunderstand about you?
The (lack of) significance of my being of above-average verbal intelligence. I got a bad reminder of this last week (the stressor I cannot share about here). For those who don’t know, I have an above-average verbal IQ, but struggle in almost every other area of cognitive, social and emotional development, adaptive behavior, etc.

3] What do you think about when you’re by yourself?
Usually the current stressor du jour, which often involves the future.

4] What are three things you value most about a person?
Kindness, compassion, respect.

Bonus Series 1 Question
If heaven is real and you died tomorrow, would you get in?
Yes, because I believe there’s no special requirement to get into Heaven (like accepting some kind of savior) and I’m not an altogether evil person.

Long-Term Care Assessment

I’ve been wanting to write much more lately, but somehow, I can’t get myself to actually sit down and write. I remember originally posting twice a day almost everyday when I started this blog, and now I’m barely writing twice a week.

I still need to update you all on the meeting with the long-term care funding person. She wasn’t the physician but the one actually making the decision on funding. The physician may still need to contact my psychiatrist in order to advise this person on funding.

She asked a lot about my level of independence in various situations. Like, she asked whether I can cook or clean the house. I was expecting her to ask about much more basic self-care skills like showering. She did ask about those too. I don’t know whether it’s a good thing or bad that she didn’t go into that much detail about my basic self-care. I mean, those are things I at least try to do myself, even though I fail miserably at them. I thought it should be obvious that I can’t cook or clean the house.

The funding person asked multiple times whether I’d had independence training. I couldn’t go into too much detail about that, but I did make it clear that I got tons of it. I also think I explained that the skills didn’t generalize to a new situation, such as living independently.

The funding person said she may want me to get some type of test for emotional development. There is a questionnaire called SEO-R that I think support staff or others involved with the client fill out to determine at what level a client is emotionally. I googled the descriptions of the different developmental stages. In some respects, I would really be like a 6-month-old, while in others, I’m closer to 7 years. I didn’t recognize myself in the most advanced stage, which corresponds to children age 7 to 12. There is probably a stage for adolescents too, but this scale was originally intended for people with mild intellectual disability, who by definition don’t reach this stage. I know the whole concept of mental or emotional age is ableist, but as long as it’s not used to actually infantilize clients, I think there is some use to it.

The intent of this scale being administered in my case is to maybe qualify me for an intellectual disability care profile. The funding person wasn’t impressed with my IQ anyway. I mean, it was measured as being 154 some twenty years ago, but was measured as at least 35 points lower in 2017 and with a ton of discrepancies. Like, I scored high on calculus, but slightly below average on comprehension. Besides, I didn’t say this, but only the verbal part of the IQ test could be administered because of my blindness. I liked it that this person didn’t see me as some sort of genius.

At the end, my support coordinator tried to explain what we’re going to do with the funding if we get it. She explained about the living facility we visited last week. I got a little unquiet at this point, so the funding person offered to talk to my support coordinator on the phone later. She never did. I don’t know whether that’s a bad thing or not.

I’ve been really stressed out these past few days. I dream almost every night about possible outcomes of this assessment. Like, will I get funding based on blindness or intellectual disability? Or will the funding people decide mental illness is my primary disability and deny me funding because I need treatment for that first? And if I get funding, will I get into the place I visited last week? I hope I will, but I’m not getting my hopes up too high yet.

Now my support coordinator is on vacation and won’t be back till the 27th. I think the funding decision has to be made by then. My support coordinator asked me to text her when I heard about the decision, so that she can bring cake if I get approved. Again, not getting my hopes up.