A Courageous Choice

Posted on by Astrid

I was a shy, withdrawn teen who was loyal to my parents even though they didn’t have my best interest in mind. I mean, if they’d had their way, I’d have gone to university and lived on my own straight out of high school in 2005, even though I could barely take care of myself. That had been their attitude towards raising “responsible” children ever since I was a little girl: if I couldn’t – or in their opinion was too strong-willed to – learn a skill as a child, I’d learn it as an adult by myself. Or not. In any case, there was no safety net.

Though I do indeed feel that children benefit from learning by doing themselves, this was not how it worked in my family. I don’t blame my parents for not having the patience to teach me self-care skills, given that I got frustrated very easily, but I do hold them responsible for not having accepted the help they could have gotten. Though it might not have led to me becoming as independent as they’d want me to be, my current situation is about as far from that goal as can be. Then again, my parents hold me responsible for that. And I, in a sense, do too.

I was reminded of this situation when I read a journaling prompt that asked me to reflect on a courageous choice I made as a teen that’s still helping me today. I immediately thought of the choice to go into blindness training rather than straight to university once I’d graduated high school. Though this decision itself did not by far lead to the self-awareness I needed to try to get into long-term care, it was my first step into the care system. And, of course, as my parents predicted, I never fully got out.

Back in June of 2005, when I accepted the blindness training center psychologist’s offer to put me on the waiting list for the basic training program, I still had my head deep in the sand about my lack of independence skills. The psychologist did not. He suggested I go to a training home after finishing the program. He probably knew that, like many young people blind from birth, and especially those from families like mine who value academics over life skills, I wouldn’t be ready to move into independent living after a four-month, basic program. I wasn’t. I never would be. Till this day, I’m not sure whether this is my blindness or my autism or my mild cerebral palsy or what. I believe strongly that, with multiple disabilities, the whole is more than the sum of its parts. Thankfully, the authorities approving my long-term care funding, eventually agreed.

When I Was Twenty

Posted on by Astrid

When I was twenty, I lived at the independence training home for disabled young adults in my parents’ city. I had had one particular assigned staff member for the first year that I lived there, but due to my challenging behavior, she refused to be my assigned staff any longer. I was fine with this, because I couldn’t get along with her anyway. Instead, the team coordinator became my assigned staff.

Over the next six months, we developed quite a strong bond. I started to feel like I could be myself with her. That was rather unusual, as I’d never felt like I could be myself with any outside person at all. I started to show her bits of my inner world, started to be vulnerable with her.

Then she went on vacation. When she came back, she informed me she could no longer be my assigned staff. I don’t remember her reasoning, but it was related to both her workload and our relationship.

I think back often to this staff now that my assigned staff at the care facility is leaving. It feels as though she’s rejecting me, just like the other one rejected me. After all, shortly after that staff could no longer be my assigned staff, I had to leave the training home.

I have been flooded with memories from when I was twenty again. I try to remember I’m 36 now, but attachment loss is still as difficult as it ever was.

In truth, I should have learned my lesson back then when I was still young: care staff are not there to stay. Don’t be vulnerable with them.

This post was written for Five Minute Friday, for which the prompt this week is “twenty”.

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.