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.

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.

Learning to Swim

Posted on by Astrid

Today’s topic for Throwback Thursday is “learning to swim”. There are no specific questions, but we are allowed to interpret the topic as we see fit. Here goes.

I got my first swimming lessons at the special school for the visually impaired I attended from first up to third grade. I, however, was very scared of the water and particularly of the deeper end. I vividly remember my teacher taking me to the deep end and my anxiously asking her if she could stand there. She was quite tall, but even so, she couldn’t. That scared me intensely.

According to my parents, my teachers were just overprotective, so my parents put me in swimming lessons at the pool close by their home. I didn’t need to start at the really shallow end, as I had had some swimming experience already, but could start at the 90cm deep second pool. Within a week, I was moved to the 110cm deep third pool, even though I think I protested.

It took me several more years before I earned my first swimming diploma. This first diploma at the time required students to be able to do breaststroke and backstroke, to swim one pool length with loose-fitting clothing, to tread water, etc., but it did not require students to swim underwater.

By the time I got my diploma, I had transferred to another school for the blind, where I had once again been put into the relatively shallow pool. I proudly showed my teachers my swimming diploma that I’d earned at home and was reluctantly transferred to the deep end.

From earning my first swimming diploma to my second, it took me only about eight months. The second diploma required students to swim 7m underwater. There was no way I could see whether I’d passed the 7m mark, so I had to guess. According to my parents, I swam about 11m.

After that, I had swimming lessons for the next three years that I was at various schools for the blind, but I never earned any more diplomas or certificates. The reason was, once again, the fact that my fear started to act up. After all, I wouldn’t swim under a mat. My parents, however, were okay with it this time. After all, my sister never moved beyond her second swimming diploma either.

I now can swim in a pool or lake. When my parents took me and my sister on vacation to Vlieland, I would also sometimes swim in the North Sea. I doubt I’d be able to save myself should I get underwater unintendedly though.

Illness or Injury

Posted on by Astrid

Today’s topic for Throwback Thursday is, as Lauren describes it, “Ouchies, owies and boo boos”. In other words, we’re asked to share our experiences of illness or injury when we were growing up. Now is an interesting time for this, as I’ve just recovered from the worst symptoms of COVID. Even though I had a mild case of it, I am tempted to take back my assertion that it’s “just a bad cold” even in my case. I’m still exhausted by 9PM, or at least was yesterday, and today just a walk around the day center had me horribly out of breath. Forget the elliptical, which I told my husband yesterday that I’d try to go onto today. Anyway, that’s as far as my current state of illness is concerned. Now, let me share about my childhood illnesses and injuries.

As a young child, until I had my tonsils and adenoids out as a Kindergartner, I was prone to colds and the flu. I can’t remember whether my parents let me stay home for most of these illnesses. Later though, we clearly had the rule that, if I ran a fever, I was sick and had to stay home. Otherwise, I wasn’t sick and had to go to school. Not that I remember ever “playing sick”.

I don’t think I was ever given medicine, such as painkillers, unless it was obvious from outward signs that I was sick either. I mean, I do remember having to take paracetamol as a child, but not for a headache or toothache. We did have a licorice-flavored cough syrup, but I only took it when my parents directed me to. In fact, it wasn’t until I was in my mid-twenties that I first learned to ask for medication myself. For the brief time that I lived independently and could take over-the-counter medications when I felt like it, I didn’t either unless a support worker directed me to. In fact, I remember buying a talking thermometer back then because I was feeling weak often and, relying on my parents’ rule that you had to have a fever to be sick, I wanted to know my body temp.

Similarly, I wasn’t taken to the doctor for minor illnesses or injuries usually, unless my parents decided they were enough of an outward abnormality to be taken seriously. I remember my father took me to the doctor one day when I was about fourteen because I had bad eczema on my neck. I didn’t see the need, but apparently it was so ugly that my father wanted me to get treated.

When I was about seventeen, I made my first appointment to see my GP by myself. I had a horrible earache, which turned out nothing to be the doctor could do much about, by the way. However, my parents said I also had to ask about getting treatment for my toenail fungus, which I didn’t consider particularly bothersome at the time. To be fair, I do now see they were right to be worried about my toenail fungus, even though it took me fifteen more years to finally get it treated properly. However, overall, I’d had it with their message that my outward appearance alone dictates when I should get help (medical or otherwise) and this was probably my first small act of rebellion. I never quite learned to gauge when I can trust my body’s signals (or my mind’s interpretation of them) and when I can’t. I’m finding that, for this reason, even up till this day, I rely mostly on other people’s judgment.

Accepting My Ordinary Identity in Christ #Write28Days

Posted on by Astrid

Welcome to day two in #Write28Days. Today’s optional prompt is “Ordinary”. Immediately, I thought: what a dull prompt! I don’t want to be ordinary. I don’t even want to write about it!

Like I said yesterday, I am an Enneagram type Four. One of the descriptors for type Fours is “The Individualist”. Another, less kind one, is “Specials”. As these denominators say, we don’t want to be boring, like everyone else, ordinary.

When I had just been admitted to the psychiatric hospital in 2007, my parents came to talk to my doctor. They said that, in order to avoid accepting the fact that I am blind, I sought out to be different in every other way possible. For example, as a teen I thought I was a lesbian. I had just gotten acquainted with my now husband at the time that my parents used this against me, but we were by no means dating yet. Besides, in my mental state at the time, my sexual orientation was about the last thing on my mind. That being said, at the core, my parents were probably right: I saw myself as a complicated, unique, special person. Extraordinary.

Now we’re nearly fifteen years on. In a way, I still see myself as different from “ordinary” people in many ways. For instance, I am multiply-disabled, including blind and autistic. I am a trauma survivor and identify as a plural system (dissociative identity disorder). I, however, also now see that I am loved by God and by others as I am. And that is what matters most: my ordinary identity in Christ.

I still sometimes focus on the aspects of my identity that make me different from most other human beings. That’s okay though, as long as my “otherness” doesn’t become all-encompassing. Ultimately, my main identity is as a person loved by God.

My Plans for This Christmas

Posted on by Astrid

Hi everyone on this rainy Thursday evening, two days before Christmas. One of Mama Kat’s writing prompts for this week is to share your plans for this holiday season. For the first time ever, I’m not just dreading the fuss. I mean, last year, I’d just become a Christian and was kind of looking forward to the spiritual aspect of Christmas, but not really either, as I knew I still had a long walk to go in my faith. I’m about the same this year. That being said, with respect to the celebrations with family, I was still dreading those last year. This year, I’m more neutral about them, even slightly positive. Let me share my plans.

Tomorrow, we’re supposed to have day activities like normal. We had our Christmas lunch today and I got half of my Christmas hamper. The other half, my staff will bring tomorrow, as it hadn’t arrived when she left to bring the first half to me yet. The half that arrived today contained mostly treats. The other half, she said, are two silicone molds for my polymer clay. I’m really looking forward to receiving those.

Tomorrow evening, I initially thought we were going to get food delivered. Thankfully, though we entered full lockdown last week, restaurants are open for takeaway or delivery. I was not yet sure which restaurant or snack corner we would be ordering from. Then this evening I found out my staff had planned to prepare a cassrole. Not something I enjoy. I contemplated ordering delivery just for myself. Then after some texting between several staff, it was decided to change the dinner plans for Friday, Saturday and Sunday around and we’re going to have fries and chicken legs.

On Saturday at around 2PM, a ParaTransit taxi is going to arrive to take me to my in-laws. There, I, my husband and my oldest sister-in-law will have dinner. My husband teased me about the food we’d have, because I’m quite a picky eater. Really though, we’re going to have chicken roulade, which I love.

My husband is likely going to read from the Bible at dinnertime. Neither his parents nor his sister are religious, but they tolerate him reading the Bible. I loved him reading Isaiah’s prophecy of Jesus’ coming, as well as the Christmas story, last year.

I may stay at my in-laws for a while after dinner and then leave for my and my husband’s house in Lobith, where we will stay for the night.

Sunday morning, which is called Second Christmas here in the Netherlands, we may watch Hour of Power together. Thinking of which, I remember now there’ll be a show on Saturday too, but I don’t know whether it’ll be in the morning or evening.

I will go back to the care facility sometime Sunday afternoon. Sunday evening, we’re going to have Chinese takeaway. This was originally planned for Saturday, but it was my favorite out of the three Christmas meals for the weekend, so I’m so happy the meal plan got shifted.

We’ll likely have more than enough treats to last us through to February, honestly. At least, I got three packages of my favorite Christmas cookies from one of my staff yesterday and another one in my Christmas hamper. That plus chocolate, winegums and Pringles. Yum, but if I’m not careful, I’m going to weigh 200 pounds by the time I’m done with them. Then again, as they say, you don’t become fat between Christmas and New Year’s but between New Year’s and Christmas. In other words, it’s snacking all year round that really leads to lasting weight gain. This being the case, I am happy this holiday season, though it is indeed part about the food, is also about faith and family.

As for my own family, both my sister and her family and my parents sent me a Christmas card. However, I haven’t been at my parents’ house in years and they didn’t invite me. If they do want to see me, I think the spring is a more appropriate time.

What are your plans for the upcoming holidays?

Mama’s Losin’ It

How I Cope With Loneliness

Posted on by Astrid

Today in her Sunday Poser, Sadje asks us about loneliness. She describes the experience as the feeling she gets when her family or friends can’t celebrate something important (such as the seasonal holidays) with her. This is one aspect of loneliness indeed. I feel lonely, left out even, knowing that my sister will be celebrating St. Nicholas with my parents next week and I haven’t been invited. Okay, she has a child for whom this holiday is more meaningful than it should be for me as an adult. Still, I am reminded of the last year we celebrated St. Nicholas with my family, or rather, the first year we didn’t. That was because of me: I had been admitted to the mental hospital shortly before and my parents didn’t want the hassle of having to watch me while I was on leave, so at first they suggested they celebrate the occasion without me. That year, my sister refused and the celebration didn’t go forward at all. Now that my sister has a child, there’s no way she’s going to care about whether I’ll be included or not. In fact, I’m pretty sure she’d rather have me excluded.

Loneliness, however, can take other forms too. Like I mentioned last month, loneliness comes from within a lot of the time. That’s why you can feel lonely when you’re surrounded by people. I often felt this way in the high school cafeteria.

I find that what helps me cope with loneliness is to surround myself with positive influences, both in the form of people and activities. I mean, I could dwell on my family’s rejection of me, but I do have a loving husband and loving in-laws. I also have caring staff and nice fellow clients, some of whom I consider friends.

It also helps me to engage in fulfilling hobbies, such as writing, reading and crafts. Through my blog and Facebook groups, I feel a genuine sense of connection to the outside world. Reading helps me escape my problems, including my sense of isolation. Crafts distract me and help me feel that I can be productive in a way. All of these help me overcome my sense of loneliness.

How do you deal with loneliness?

Life Skills I Struggle With As a Multiply-Disabled Person

Posted on by Astrid

Earlier today, Ann Hickman wrote an interesting list of ten life skills she is teaching her autistic teenager. As a teen, I missed out on most of these lessons she mentioned, leading to a big gap in my skills as well as my awareness of them.

Of course, lack of education isn’t the only reason autistics and otherwise disabled people may struggle with life skills. I struggle with many of them due to lack of energy, executive functioning issues and other things.

Today, I am sharing life skills I struggle with and why.

1. Personal hygiene. I remember vividly my sister gave me a deodorant for my fourteenth birthday as a hint. I didn’t get it. I wasn’t taught about hygiene much beyond childhood, but even if I were, I didn’t grasp the concept.

Similarly, because we had a bath at my parents’ house, I didn’t learn to properly shower. I didn’t know until a few years back that you’re supposed to use body wash when showering each time.

Other personal care tasks, I simply cannot do due to my physical limitations. I cannot clip my nails, for instance. I know some other blind people (presumably without physical disabilities) can, but other blind people I know go to the pedicurist for this.

2. Meal preparation. While in the training home, I tried for weeks to learn to put peanut butter or jelly on my bread without success. My mother can’t do it blindfolded either. My father can, but he assembles all his supplies around him in a very structured manner.

To be honest, I never had to prepare my breakfast or lunch before going into the training home, as we didn’t eat breakfast at my parents’ home and my lunch was always packaged by my mother (or I’d eat a sausage roll at the cafeteria).

There are probably ways I could prepare my own meals if I really need to. I mean, when living on my own, I just ate plain bread without toppings. However, I prefer my staff prepare it for me.

3. Cleaning. This is a difficult task for most blind people, but it can be done. I can dust my desk and table with minimal help if I’m reminded to do so. However, I can’t vacuum or mop the floors. I learned both, but with each house having a different way it’s set up, it’s very hard to find my way around it with a mop or vacuum cleaner.

What I struggle with most with respect to cleaning, is remembering how often each task needs to be done and actually organizing them. For example, in the training home, I’d clean the top of the doors each week despite no-one ever touching them. On the other hand, I’d procrastinate about changing my bed sheets, sometimes leaving them on for months.

4. Getting around. Ann mentions navigation for a reason: regardless of high-tech solutions to help people navigate, they still need to learn to use maps or to use public transportation. For me as a blind person, mobility was always more important, as it additionally involved safe white cane travel. I never mastered this, even with seven years of mobility training in special education and many more lessons once out of special ed. I only recently learned that more blind, neurodivergent people struggle with white cane usage.

Currently, I can for the most part move around inside the care home by myself, but I cannot at all get around outside without a sighted guide. My parents used to blame this on lack of motivation. While I am pretty sure this, as well as anxiety, does play a part, it is also about other things. Besides, lack of motivation is not the same as laziness. In my case, it feels as though the activity of independent travel overloads me cognitively to the point where I feel incapacitated.

I am assuming Ann’s son is “just” autistic, whereas I am multiply-disabled: autistic, blind and mildly physically impaired. However, with this article, I want to make it clear that there are many reasons a disabled teen or young adult might struggle with life skills and, for this reason, many different approaches to supporting them.

Keep Calm and Carry On Linking Sunday
loopyloulaura

Suicidal Ideation in Childhood: Some Reflections

Posted on by Astrid

Earlier today, someone online asked a group of autistic women about suicidal ideation in childhood and at what age it started. It is common knowledge that depression and suicidality are near-universal among autistics. After all, we are taught, be it consciously or not, that our autistic way of expressing ourselves is unacceptable.

I remember my first autistic burnout at age five. I don’t have clear, verbal memories of the experience, but my inner five-year-old might and I do experience somatic and emotional flashbacks. The family story about the event is that I was ill with the flu. At the same time (coincidentally or not) my parents were making arrangements for me to start at the school for the visually impaired. I started in mid-May, before the end of the school year.

At the time, I wasn’t actively suicidal as far as I’m aware. I started having those thoughts when I was around age seven. I have a vague memory of telling my mother that I wanted to die sometime around that age.

Interestingly, I never made suicide attempts. Even the times I planned my “final day alive”, I never had any idea how I was going to go about actually doing it. This fact was later used to “prove” that I wasn’t serious.

I mean, when I was 21 and admitted to the psych unit, my parents came to tell the psychiatrist that I’d threatened suicide ever since I was seven-years-old, almost adding triumphantly: “See, and here she is, alive!” They said I just wanted attention.

Then again, is it somehow bad that I, deep down, didn’t really want to die? I just didn’t see any alternative. Of course I didn’t want to die by suicide. I imagine at least most people don’t really want to; instead, they want a better life. But I couldn’t get that at that time or so I thought. Does that make me a bad person? I don’t think so.

It’s so sad that, at least in my family, the red flag of long-time, severe suffering was ignored as a sign of “attention-seeking”. As if a seven-year-old even has the capacity to use suicide threats to manipulate their parents for mere attention without anything else going on with them.

Thieves!

Posted on by Astrid

When I was little, my parents would store their sweets (usually licorice but sometimes other sweets too) on a shelf just within my and my sister’s reach in their pantry. I’m pretty sure they’d tried putting them in higher places but we’d just climb up stairs or other furniture to reach them.

Invariably, on Saturday and Sunday mornings, when my parents slept in, I’d lead my sister to the pantry and we’d steal some sweets. Yes, I am pretty sure I took the lead.

I obviously thought they were unaware. That is, until one day when I was five and had just learned to read. There it was, on the sweets shelf, a paper that read “BOEVEN” in large print. This is Dutch for “crooks” or “thieves”. My parents never actually confronted us about grabbing their candy except on this one playful occasion.

In reality though, I still wasn’t truly aware that my parents knew. In fact, I remember one day when I was about fifteen, my parents had left like eight hamburgers on a plate in the kitchen and I sneaked into it to eat one at a time. My parents never confronted me and it wasn’t until a few years ago that I realized they must’ve known. That is when the shame at having eaten this many hamburgers caught up with me.

This post was written for Friday Writings, for which the optional prompt this week is food. It is a an autobiographical piece.