Precious Memories of My Father

Posted on by Astrid

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.

Because I’d Had a Stroke…

Posted on by Astrid

I couldn’t possibly be autistic, my psychologist said, because I’d had a stroke as an infant and that somehow precluded a diagnosis of autism. Never mind that autism is genetic and said stroke supposedly didn’t change my genetic makeup to make me neurotypical. I, however, had to be diagnosed with acquired brain injury-related behavior change instead, but then again I couldn’t either, because I was too young when I sustained the stroke for my behavior to be considered as having changed either; after all, a six-week-old infant hardly shows any behaviors that would be considered significant in an adult. For this reason, I ended up with just some regular personality disorders, specifically dependent and borderline PD. Never mind that these have their onset in early adulthood and I’d shown symptoms since childhood. As it later turned out, my psychologist’s reason for changing my diagnosis had nothing to do with logic and everything with her wish to kick me out of care.

This post was written for the Six Sentence Story link-up, for which the prompt word is “stroke”. It isn’t completely factual, in the sense that, though my psychologist kept referring to what happened to me at six weeks of age as a stroke, it was actually a brain bleed. That doesn’t change the rest of the story though.

The Staff Have the Key

Posted on by Astrid

I have a morbid sense of humor that has sustained me through the darkest times of my life. I remember when I was in a suicidal crisis in 2007, being held at the police station while waiting for the crisis service to assess me, telling the officers how I wasn’t all that creative, since I had thought out only a few ways to die. I think one of the officers tried to distract me by saying that I must be creative, since I have a blog, but I wouldn’t listen.

Once I had been admitted to the psychiatric hospital, locked ward, with no privileges (as they are called) to leave the ward unsupervised by staff, I started to crack jokes. They were rather lame jokes if you ask me, jokes I’d plucked off the Internet, such as those about the differences between the patients and staff on a psychiatric ward. First, the patients get better and leave; second, not all patients believe they’re God; lastly, the staff have the key.

This post was written in response to this week’s Six Sentence Story Link-Up, for which the prompt word is “key”.

My First Crush

Posted on by Astrid

Hi everyone. Today’s topic for Throwback Thursday is first crushes. Let me share.

My first crush was a boy called MJ (that is, he had a double first name). I think he was a year younger than me. I was ten at the time and in the fifth grade at the school for the blind. Back then, we would always say we were like 90% in love with the other one. I don’t know where the percentages came from or if kids in other schools used them too. I certainly remember telling MJ that I had a crush on him and at that point, several kids in his class pushed me to kiss him. I gave him a quick kiss on the cheek but till this day feel intense shame about it.

I don’t remember feeling heartbreak when that “relationship” ended. It only lasted for a couple of weeks anyway. I do know that MJ passed away when I was in high school, something I didn’t find out about until many years later.

My second crush was a girl named Layla and I’m not even sure I’m spelling that right. I was fourteen at the time and had only met her once. She was in the grade below me at secondary school. At the time, I was still about as clueless about love as I’d been at age ten. After that first encounter, I never met Layla again and so I never told her I had a crush on her.

For years, I’d have fleeting crushes on various girls and boys who paid me attention, but I never told them. I never quite fantasized about having a husband (or wife, since same-sex marriage is legal here) when I’d grow up. In fact, when my now husband told me he was in love with me, I wasn’t so sure whether to reciprocate it. I did like him, but did my feelings go beyond mere friendship plus a little puppy love because he was paying me attention? In the end, it didn’t really matter, as our relationship and now our marriage is a happy one.

Heal

Posted on by Astrid

Today’s prompt for Five Minute Friday is “Heal”. I read several of the responses before writing mine. Some left me feeling all sorts of things, which I will try to articulate in the below freewrite.

Is it possible to heal from a hurt you can’t explain in words? Can something that you can’t describe in words, a memory that is just visceral, even be traumatic? I am referring to preverbal trauma, of course and, in theory, I know the answer: yes, it exists and yes, healing is possible.

However, in reality, how can I prevent my cognitive processes from constantly interfering with my experiences? Or should this be prevented at all? I mean, if I can rationalize that I’m now in 2022, living in the care facility and not in whatever danger my body thinks (feels?) it’s in anymore, does it even matter that I endured preverbal trauma?

After all, it’s a fact that I did: I was born prematurely, spent the first three months of my life in hospital and had several complicated surgeries before the age of five. The question is whether said possibly-traumatic events affected me and, if so, how to heal from them.

Sunday Ramble: Childhood Memories

Posted on by Astrid

Hi everyone. I’m participating in E.M.’s Sunday Ramble again. Today’s topic is childhood memories. Here are the questions.

1. What is your first good memory from your childhood? (If this is a trigger question for you, tell me how your day is and what the best thing is about today.)
My third birthday. My grandma visited and gifted me a doll she’d bought in Berlin, Germany. Either she or my father explained that, in German, the word for doll is “Puppe”, which is pronounced the same as the Dutch word for “poo”. Of course, me being three and my sister being one, we laughed our butts off.

2. Name 3 things that you loved when you were just a youngster?
Playing with PlayMobil®. Swinging on the swings. Making mud pies.

3. What did you dislike, or even hate, when you were growing up?
A lot of things, as my childhood wasn’t the best. However, I’ll keep this non-triggering. I hated it when my sister was singing or humming.

4. If you could go give your younger self one piece of advice, what would you tell them?
You have absolutely zero obligation to prove your worth to your parents or anyone else.

5. What kind of celebrations did you enjoy when you were little, and do you still like those celebrations now that you are grown?
I had a love/hate relationship with all kinds of celebrations. I loved getting presents and special treats, but hated the social obligations involved. When I was a child and teen, we celebrated St. Nicholas. This involves pretending that St. Nick gave us presents. Once I no longer believed in St. Nicholas, I greatly struggled to play along and this led to some frustration among my sister and parents. Needless to say, now that I’m an adult, we no longer celebrate St. Nicholas. My sister and her family do celebrate it with my parents though.

I felt similarly about my birthday, loving the presents but not liking the social aspects. Same now that I’m an adult and more so with my family of origin, because, well, we don’t have the best relationship. With my husband and in-laws, I do like being together for my birthday.

6. Bonus Question: What commercial did you always wait for to come on television as a child? (If you didn’t like commercials or television, what event did you wait for to come about when you were a kid?)
I didn’t really enjoy commercials, although I liked Loeki the Lion, who came on inbetween commercials on public television. He was recently reintroduced after an absence of over twenty years I believe.

With respect to TV shows in general, as a child I loved a show called Droomshow (Dream Show), in which a pair of girls competed against a pair of boys in all kinds of candy-related games and the winning team had to shoot for prizes while the losing team got the “shitty shower”.

What was your first good childhood memory?

The Wednesday HodgePodge (May 18, 2022)

Posted on by Astrid

Hi everyone. Joyce has prepared some fun questions for the Wednesday HodgePodge this week, so I’m joining in again. Here goes.

1. What’s something that makes you feel stressed? How do you cope?
Uhm, me, stressed? 😉 Seriously though, there are a lot of things that make me stressed. The most likely stressors for me are when my routine gets disrupted and when I get frustrated during a craft project or other activity that’s important to me.

As for how I cope, well, usually, uhm, I don’t. I do try to calm down by reminding myself that whatever’s going on isn’t the end of the world. However, most of the time I need someone else to sort out the problem I’m facing for me before I can calm down.

2. What’s a food you eat that evokes a memory? Explain.
I honestly don’t know, since I don’t eat most foods from my childhood anymore (or at least not in the form my parents used to cook them). I also don’t have many memories attached to foods I do currently eat. I mean, I clearly remember the licorice “pie” my staff and fellow patients at the psych hospital made for my wedding, but I haven’t eaten that brand of licorice in years.

3. This week’s Hodgepodge lands on National Visit Your Relatives Day. Will you celebrate by visiting a relative? If so is travel involved? Geographically, who is your nearest relative (not counting those living in your own house)?
I had no idea this holiday even existed, so no, I won’t be celebrating and no, I didn’t happen to visit a relative today anyway.

I am not sure whether in-laws count as relatives. If they don’t, my parents are my closest relatives geographically. They live a little over an hour’s drive and about 100km away. If in-laws count too, my sisters-in-law are probably my nearest relatives geographically. They are about an hour’s drive but only about 60km away. Both live in the same town but not in the same house.

4. What’s your most frequently used emoji? Do you make more phone calls, send more emails, or mainly text to communicate with friends and family?
My most frequently used emoji is the slightly smiling emoji followed by either the purple heart or the laughing emoji.

I mainly text to communicate with my husband, although we do talk on the phone nearly everyday too. With other family, well, I call or text them every once in a while but I wouldn’t say either is frequent. E-mail is used for discussion lists and contact with my staff mostly.

5. Tell us the story behind a favorite piece of furniture.
Okay, I’m going with the desk I have my computer and phone on right now. This one, my father bought for me on a marketplace site in like 2006. I think the person selling it was located in Fryslân in the north of the country, about a two-hour drive from my family home. The desk isn’t too large, but it cannot be taken apart. My father drove an older Nissan Micra, so a small car. The desk just about exactly fit inside the back of the car. Or actually, just about exactly didn’t fit. As a result, my father had to drive while the back of his car was open. This was quite an interesting ride. That being said, I’ll still have to ask my father how he got my tandem bike from their home to the psych hospital in Nijmegen, either in or on that same Nissan Micra or on a train.

6. Insert your own random thought here.
All this talk of relatives and family makes me want to talk to my sister. She’s expecting a baby. That is, unless she’s left me out of the loop, the baby’s still inside of her even though she’s past her due date. She said she’d probably let loose what she’ll be calling the child already. I’ve heard two names so far, one of which I like and one of which I, well, dislike quite a bit. I’m just hoping mother and baby will be well and that my sister can have a home birth, as that’s what she’s wished for all along. With her other daughter (she’s expecting a girl again), she did give birth at home but the child had to be taken to hospital a few hours later anyway.

All this is making me feel all sorts of feelings. In a sense, I wish I were closer to my family of origin, but I know they don’t agree with the choices I needed to make (ie. going into long-term care). My sister also lives about two hours and 180km away from me. It’s all rather sad really.

Making Up My Mind: Why I Want to Live in an Institution

Posted on by Astrid

Last week, the behavior specialist for my care home came by for a visit to discuss my housing profile. This is the thing with my wants and needs with respect to a new prospective care home on it. I initially wasn’t too picky, saying for example that I would most like to live on institution grounds but if that isn’t possible, a quiet neighborhood home would do too. Then when I talked to my husband, he said that an integrated neighborhood doesn’t get much quieter than my current neighborhood in Raalte. He also told me I don’t need to make compromises about where I want to live as of yet, since I will be looking to stay in my prospective new home for the rest of my life.

The reason I initially compromised about living on institution grounds, is that my current care agency has only one such institution and that one at least wasn’t admitting new clients back in 2019. I’m not sure about right now or whether not admitting new clients means they aren’t keeping a wait list either. However, I was wary of contacting other agencies due to the bureaucracies involved. Then my husband said though that this shouldn’t be something for me to worry about.

Eventually, after talking about it with my assigned home staff, my husband and my mother-in-law, I decided to make up my mind about my wishes for the housing profile. I said I’d really like to be looking at institutions.

This does mean I had to drop my objection against contacting external agencies. I offered two agencies we could contact other than my current one. One has an institution in Apeldoorn, the city I grew up in, and another in a small town elsewhere in Gelderland, about a 45-minute drive from Lobith, where my husband lives. For reference: Raalte is about a 75-minute drive from Lobith and I did agree with my husband that I won’t be looking at care homes that are farther away. The other agency has an institution near Apeldoorn and one near Nijmegen. I’m not sure the one near Nijmegen was acceptable distance-wise to my husband, but the one near Apeldoorn certainly was.

Both agencies are unlikely to refuse to consider me based on my IQ alone, even though both primarily serve people with intellectual disability. The reason I think so is that both also serve other populations and I have some experience with both agencies.

I do feel all kinds of feelings about the fact that I’ve made up my mind. For one thing, I do feel some form of shame about wishing to live on institution grounds. Back in 2006 and 2007, I wrote agitated articles about the fact that deinstitutionalization was said not to be working by some non-disabled advocates for the disabled, claiming it was poor care, not community living, that was at fault. I meant, for example, the fact that people in the community need more support to go outside if, for example, they aren’t safe in traffic, than they would need in institutions. Then, if that support isn’t provided, it’s no wonder they’d rather go back to living in the woods.

Now one of the reasons I want to go into an institution is the fact that I don’t feel safe leaving my home and the only way of preventing me from leaving it anyway is locking me up. Now tell me again you want the least restrictive environment.

Another feeling has to do with the institution in Apeldoorn specifically. My family home was quite close by that institution. So close in fact that I remember one day when I was eighteen, having an encounter with the police and being asked whether I’d run away from there. I know my parents would feel intense shame if I moved there. Then again, they probably feel intense shame at the fact that I live with people with intellectual disabilities already. Besides, who cares what my parents think?

I do have a few things I need to consider when looking at external agencies. For example, my current agency provides free, pretty much unrestricted WiFi in all rooms of all its homes and it’s available to clients if they wish to use it, which I do. I am not sure the other agencies do, but I will inquire about this when the need arises.

Early Experiences With Medical and Dental Care

Posted on by Astrid

Today’s topic for Throwback Thursday is doctors’ or dental visits. I have many early memories of medical care, probably because I, being multiply-disabled, often had to visit the doctor. Until I was about nine, that is, when my parents, my sister and I moved across the country and my parents stopped taking me to doctors altogether except when I had everyday ailments.

An interesting question Lauren asks in her original post, is whether your parents were scared of doctors or dentists. Well, truthfully, yes, mine are. My mother had her own fair share of traumatic experiences involving doctors, among which a situation that would’ve been considered medical malpractice had it been in the U.S. surrounding my premature birth. My father, I don’t know. He probably feels he’s smarter than most doctors and hence considers spending time with them a waste of his own time.

All that being said, up till the age of about nine, I was taken for medical care when I needed it. I don’t think I was really taken for health checks except those part of preemie follow-up. I don’t remember most of these visits, except the ones to the eye doctor. My eye doctor was always, and I mean literally always running at least two hours behind schedule. Waiting in the waiting room for her was the worst. Well, no, the second worst: the absolute worst was waiting for her to come back after she’d put dilation drops into my eyes.

I don’t think I was very afraid of needles as a child. In fact, when I needed to be put under general anesthesia for my various surgeries, as soon as my parents allowed me to make the decision myself between the anesthetic mask and the injection, I always chose the injection. I remember being horribly afraid that I would get the mask when I had to have cataract surgery in 2013, even though I’m not even sure they do this on adults.

One thing I did always remember was that the hospital staff would stick me in my toes rather than my fingers for finger pricks, because the nerves in my fingers should not be damaged because of the fact that I read Braille. I had to have a finger prick last year and told the medical assistant that she was supposed to stick the needle in my toe. She explained that she couldn’t, so I reluctantly agreed to have her stick the needle into the side of a finger I hardly use for reading.

As for dental care, I think I did have proper dental check-ups when I was young. I didn’t have problems with my teeth until I was about eleven and fell and a bit of one of my front teeth broke off. That was the first time I started worrying about my teeth. I did need braces, which was quite an ordeal as the orthodontist never explained properly what I could and couldn’t eat, so there were always parts of my braces getting loose.

I am not very scared of doctors. Dentists though, well, it’s complicated. I am scared of dentists, but also scared of losing my teeth. This has led to some rather odd situations in which I sought out dental care that I might not have needed and didn’t seek out dental care that I did need. Thankfully, now that I live in long-term care, I do get regular dental check-ups and the staff and dentist do try their best to make me feel as comfortable as possible.

What If I Lose My Care?

Posted on by Astrid

Today’s prompt for the Weekly Prompts Wednesday Challenge is fear. More specifically, the organizers ask us to consider whether we ever worry about the “what if’s” of a situation without looking at the positive present. Fear, for me, takes many forms, including post-traumatic stress, in which I relive the past. However, it also includes worrying about the future indeed.

Specifically, I worry about losing my support. Of course, this is a realistic worry in a sense, in that my one-on-one support has only been approved until sometime in late 2023. However, right now it’s only May 2022 and a lot could happen between now and then.

This worry also takes unrealistic forms. For example, sometimes I’m convinced that the psychologist from the psychiatric hospital who diagnosed me with dependent personality disorder to “prove” that I was misusing care, will find out that I’m in long-term care and will report me for care fraud. If she does and if the authorities follow along with her allegation, I will not just lose my one-on-one, but all my long-term care and will essentially be required to move back into independent living with my husband.

In a sense, the fact that this “what if” is my worst fear, does prove sort of that I do have dependent traits. However, dependent personality disorder or dependency in general is not the same as misusing care. After all, I never disputed my psychologist’s claim that I wished to be cared for. What I disputed, is her claim that this wish is unfounded, in that I don’t really need this care.

In a similar fashion, recently I’ve had “what if’s” in my head about moving to another care home. What if the staff there expect me to be much more independent than I am right now? In a sense, one reason I want to move to another care home is to have a better quality of life, a broader perspective. This may include greater independence. But I don’t want to be forced into it.

I am reminded of a question on a personality test I had to fill out for my autism re-assessment back in 2017. The agree/disagree statement went something like this: “Being left behind alone is my worst fear.” I didn’t know how to answer it back then, as I thought at the time that being in serious pain would be worse, so I ticked the “Disagree” box. Then again, at the time, I hadn’t experienced significant time being left to my own resources in at least nine years. Now, I would certainly tick the “Agree” box even though I know it was a red flag for dependent personality disorder. I don’t care.

What if I lose all my care and am left to my own resources? During the same assessment, I had to answer a question about how difficult it would be to stay on my own for a couple of days. I ticked the “Very difficult” box, not the “Impossible” box that I would have ticked now. Then again, if my husband had stocked up on food and I had my computer and phone with me, would it literally be impossible? Hmmm, well… emotionally, yes, it would be.