The Wednesday HodgePodge (March 22, 2023)

Posted on by Astrid

Hi everyone. I’m joining in with the Wednesday HodgePodge once again. Here goes.

1. Did you celebrate St. Patrick’s Day in some way? If so tell us how. Are you a fan of corned beef? Cabbage? The color green?
No, I didn’t celebrate St. Patrick’s Day. I am not a big fan of cabbage or corned beef, but it’s not like I hate them either. I do love the color green.

2. March 22nd is National Goof Off Day…will you celebrate? Your favorite way to goof off? Last time you had a whole day to spend “goofing off”?
I don’t work and can officially choose my own activities within my day schedule, although a lot of staff will suggest them for me. In this sense, I can “goof off” as much as I like, although it doesn’t often feel like it. My favorite ways to “goof off” would be reading, watching YouTube videos and chilling out with an essential oil diffuser on. By the way, crafting is also a favorite way to spend my time, but since I need support with that, I often don’t feel as playful about it as the expression “goofing off” reminds me of.

3. Something on your to-do list that has been there more than a month? Will this be the month you finally cross it off?
I don’t have a to-do list, honestly.

4. In your opinion, what emotion is the most beneficial? Which one is the least useful?
The most beneficial emotion, to me, is joy. Okay, yes, I copied that from Joyce but I completely agree. I had it as my word of the year last year. The least useful emotion, to me, is bitterness.

5. What was your favorite thing to do as a kid? Elaborate.
Many different things. I enjoyed playing with PlayMobil® until I was at least thirteen. I also loved sitting on the swings in my garden. However, I was also quite nerdy, enjoying geography and drawing maps by hand (obviously not detailed at all due to my severe visual impairment and my poor spatial awareness). My favorite map to draw was that of Italy.

6. Insert your own random thought here.
Just a thought: for those of you who don’t need care, can you imagine what it’d feel like if, each day, five or so different support people, often random strangers, showed up in your home claiming to want to do an activity with you? How about if they felt entitled to ask you personal questions to “get to know you” without disclosing much about themselves (after all, they’re “professionals”). What if, after six months, you’d seen literally over a hundred of them, if not several hundreds? How would it make you feel? I just asked a staff, who is a temp worker here but has supported me about ten times now so I’m supposed to “know” him, this question, after I got very irritated with another temp worker (who’s supported me about five times). The more familiar temp worker seriously replied that he wouldn’t mind who got into his home as long as they’d do the activity with him. I guess this means needing care is too far out of his realm of experience to understand the question.

The Wednesday HodgePodge (February 15, 2023)

Posted on by Astrid

Hi everyone. I’m once again joining the Wednesday HodgePodge today. Here goes.

1. Pantone’s color of the year for 2023 is Viva Magenta. Etsy’s color(s) of the year are indigo and honeycomb. Your thoughts? Would we find any of these three shades in your home or wardrobe? Is there a room in your house that needs painting this year? Will you do it yourself or hire out?
I don’t care for magenta and have no idea what color honeycomb is. I do love indigo. I do have magenta as a polymer clay color, but use it for mixing my own colors. For instance, I’m pretty sure magenta was in the color recipe for creating indigo I once read (although I’ve never tried it yet).

I have no idea whether any room in my and my husband’s house in Lobith needs painting. If it does, I guess my husband will do it.

2. Something you had to do recently that could be described “as exciting as watching paint dry”?
Try to condition my blue agate polymer clay. Though it was Fimo Soft, it was quite hard and crumbly. Doing the conditioning is a very repetitive process, which can be exciting if it yields results, but this time, it hardly did. I eventually gave up and chose another color.

3. Who would you most like to sit beside on a 10-hour flight? Tell us why? Have you ever taken a 10-hour flight?
My husband, of course. If I get bored of him talking about his latest special interest, I can just tell him I’m minding my own business and he won’t be disappointed. Oh wait, you can’t use mobile devices on flights. However, I can sleep on flights. Also, my husband would be the one I’d least easily get bored of sitting next to for ten hours anyway. I’ve never been on that long a flight. My longest (and first) one was 3 1/2 hours from Amsterdam to Moscow in 2000.

4. What’s something you did growing up that would get you into trouble?
Argue with my younger sister, throw temper tantrums, have meltdowns that were perceived as temper tantrums, engage in self-injurious behavior, but also general autistic weirdness. I’d get in trouble almost on a daily basis.

5. According to Google the top searches in 2022 were- Wordle, election results, Betty White, Queen Elizabeth, Bob Saget, Ukraine, Mega Millions, Powerball numbers, Anne Heche, and Jeffrey Dahmer.

Hmmm…what does this say about us? How many of these words did you search last year? What would you guess was your most “googled” word/phrase/question?
I think it just says that we search for what’s in the news currently (mostly). I mean, Ukraine and Queen Elizabeth were and I guess the election results refer to some election somewhere (no idea where). I saw the Jeffrey Dahmer thing too and think it relates to a movie about him which came out last year. Never heard of any of the other things.

I didn’t Google any of these things myself but did click through to the Jeffrey Dahmer Wikipedia article when it was trending on there.

My most searched for phrase on Google, no idea. On YouTube, probably something like “polymer clay unicorn”.

6. Insert your own random thought here.
My husband and I went to Apeldoorn on Sunday. At Hema, which my husband claims is his favorite store, we saw alien-style cookie cutters. My husband suggested they may be useful for polymer clay, if a bit large. I said that if they’d come in a unicorn shape, I’d get them.

Then yesterday when we were on the phone, he told me my Valentine’s present hadn’t yet arrived. I didn’t even really expect one, but I told him his Valentine’s present would soon go into the oven, as I had indeed finally managed to craft something. He then went on to guess (jokingly) that I’d baked him unicorn cookies, a particular brand of cookies that aren’t unicorn-shaped at all but that we keep talking about since I got them in my Christmas hamper. He then told me that, if I’d make cookies with my Valentine’s present, they’d automatically turn into unicorn cookies. So my guess is he found me some unicorn-shaped cutters. How cool!

Advice I’d Give My Younger Self

Posted on by Astrid

In today’s Sunday Poser, Sadje asks what advice you’d give your younger self. Like in her case, for me it would be different depending on my age.

For example, I could have advised my twelve-year-old self not to be so loyal to her parents’wish to have her go to mainstream grammar school. However, rebellion in a young adolescent is rarely seen as a positive thing and even much less taken seriously. Preteens are expected to be loyal to their parents.

Besides, as someone who had hardly any social contact outside of the home, I didn’t know what was “normal” other than what I saw in the house – which in hindsight was far from normal.

For this reason, I am not really sure what advice to give my childhood self other than to savor the few friendships she did have.

To my teenage self, I would give the advice of standing up for herself more but in a kind way. Then again, this is basically the advice I’d give any younger version of myself and even present-day me, but I have little idea of how to go about actually doing it. I mean, I feel like I’m a doormat that can be walked over and a bed of nails at the same time.

I wish I could give myself the advice not to let others make decisions for me, but the two times I sort of made the decision to move somewhere on my own initiative, both went horribly wrong: my move to the psych hospital in Wolfheze in 2013 and my move to my current care home. For this reason, I’m still unsure I can trust my own decision-making. In truth, of course, I was misinformed in the latter case and not given enough time to process the decision in the former, so it’s not entirely my fault.

I guess, after all, there’s one piece of advice I’d give my younger self. It’d be for my nineteen-year-old self in April of 2006, when my parents threatened to abandon me because I was delaying going to university for another year in order to prolong my training home stay. The advice I’d give her is to let them have their way and not allow the training home coordinator to mediate. This, after all, led to the training home being pressured to require me to live completely independently and go to university after completing the program, something I never even wanted.

I know it’d take immense courage for me at that age to be disloyal to my parents, but had I been completely honest about my needs back in 2006, I would most likely not have ended up in my current care home now and wouldn’t even have needed as much care as I do now.

Visiting Extended Family

Posted on by Astrid

Hi all. Today’s topic for Throwback Thursday is contact with extended family and especially the coming together and leaving.

When I was a child, my extended family lived all over the country. For reference, I live in the Netherlands, so “all over the country” means anyone was still within a three-hour driving distance. However, we didn’t visit with extended family very often. I rarely saw my aunts and uncles except at my grandparents’ house. As for those, we visited my maternal grandparents several times a year even though they lived closer by where I lived as a young child than my paternal grandmother. My paternal grandmother, we saw most often and had sleepovers with each summer and sometimes at Christmas too.

I don’t think we had any rituals for the coming together. For leaving, my paternal grandmother wanted to give everyone a kiss on the cheek. I didn’t mind and hardly even noticed it until she wanted to give my husband a kiss when we last saw her in 2016. My husband politely refused.

Like I said, my sister and I had regular sleepovers at my paternal grandmother’s house. We always slept on thick matresses on the floor, but they felt pretty comfy nonetheless. My grandmother made her own quilts, so she probably lay one of them over us as a duvet.

As for my paternal grandfather, I only ever visited him for day trips, but my sister once went on a week-long trip on my grandfather’s powerboat with him. They actually slept on board.

I can’t remember whether I found saying goodbye to extended family after a visit was over difficult or not. It probably depended on how well I liked said family member.

That brings me to the question of which family member I would like to bring back to life for a visit. I’d certainly choose my paternal grandmother. I have talked positively about her many times before. She declined a lot both cognitively and physically over the last few years of her life and I didn’t feel comfortable visiting her anymore during the last eighteen months she lived. Even so, I know she remained resilient up till the end and, when she could no longer take it, I know she had seriously exhausted all possibilities of remaining optimistic. She died during palliative sedation on May 12, 2018. If I could bring her back to life for a visit, I’d tell her I’m still happily married to Jeroen. For those who don’t know, my paternal grandmother was my official witness during the wedding ceremony.

Early Memories of Physical Activity

Posted on by Astrid

A few months ago, I read on another blog about Carrie Underwood’s book Find Your Path: Honor Your Body, Fuel Your Soul, and Get Strong with the Fit52 Life. One of the aspects that immediately appealed to me in the book, are the journal prompts. Yes, duh, you know, I’m a sucker for journal prompts. However, Carrie Underwood’s journaling prompts are not just random one-liners, they’re deep questions. One of them is about early memories of physical activity. Today, I want to share my thoughts on this.

As a young child, I loved playing outside. I used to build sandcastles in the wooden sandpit my father had built, not even caring that the wood hadn’t been treated so it got moldy every once in a while. I remember telling you all the story of how my father used to call my Kindergarten friend, whose last name translates to Peat in English, “Kim Mud”.

When I got older, I loved learning to rollerskate. I remember joining an informal neighborhood rollerskating “club” led by the oldest of two girls who lived next door. She was my age and could rollerskate real good or so we all thought. I wasn’t nearly as good or even as good as my own younger sister, but who cared? I didn’t.

I got a large tricycle when I was about seven or eight because I couldn’t ride a bike due to my cerebral palsy. Not that I could safely ride a bike, given my visual impairment, but apparently the rehabilitation physician had no idea. I occasionally rode my tricycle, but preferred to walk around the neighborhood.

However, by age seven or eight, when I started to lose my vision, my physical activity level also started to decrease. I am pretty sure it’s more than just my vision though, but there’s no way to prove this as my parents stopped taking me to specialists around that age. I am considering asking my GP or the intellectual disability physician at the care facility for a referral back to rehabilitation medicine, because I want to learn to make the most use of the mobility I do have.

I did till my mid-teens love to sit on the swings. I’m not sure that counts, as it is a sedentary activity, but you do move your legs pushing yourself. I would go on the swings for hours on end. Now though, I get dizzy even going on the swings for five minutes at a time.

A thing I also did from toddlerhood until I moved out of my parental home at age nineteen, was this crawling-in-place movement while in bed. By the time I hit adolescence, my parents complained that I ruined the bed and made too much noise, but I continued to move in this way exactly until I moved to the independence training home. I could do this for hours on end too and I now realize it’s probably a form of autistic stimming.

Overall, I wasn’t physically active in most of the traditional ways. I wasn’t in sports as a child and P.E. was one of my least favorite classes. However, I can’t say I sat on my butt all the time. I didn’t even as an adolescent, though I probably was more sedentary then than I should have been.

How about you? Were you physically active as a child?

How I Was Disciplined As a Child

Posted on by Astrid

Hi everyone. Today’s topic for Throwback Thursday is “rules and discipline”. I am going to try to keep this post as non-triggering as possible, but if you endured childhood abuse, you might want to skip this post. Then again, maybe what I endured wasn’t abuse at all? Well, in that case actual survivors might want to skip it because it might come across as invalidating.

My parents rarely set clear rules when I was a child or teen. I can’t remember having curfews and, even at ten-years-old, I was allowed to stay awake in my room for as long as I wanted provided I didn’t wake anybody else.

In this sense, none of the provided questions in Maggie’s original post made much sense. I mean, I was often sent to my room as punishment, but I cannot remember what for. I also was never told how long to stay in my room, so I usually stayed for about an hour then slowly re-emerged.

My parents, both of them, also used corporal punishment. However, I get a feeling that they hit me more out of a sense of powerlessness than out of a righteous wish to set me straight. Unfortunately, corporal punishment didn’t stop when I got older. In fact, the last time I was hit, was when my parents more or less kicked me out of the house when I was nineteen. And then I don’t include the time my mother tried to slap away my hand from my hair to prevent me twirling it when I was 23 but I slapped her hand away.

My parents, like I said, didn’t have clear-cut rules, but they did have expectations about socially appropriate behavior. They had their own words for ridiculing me when I “misbehaved”.

The positive side of there not being many clear rules, was that my parents encouraged me to do things most other teens, and certainly disabled teens, would not have been allowed to. I was allowed on a four-week-long summer camp to Russia at age fourteen, being the youngest of the Dutch participants and the only one with a disability (the program officially catered towards the visually impaired). Then again, when I struggled socially in Russia and for this reason wasn’t allowed back the next year, my parents, especially my father, completely guilt-tripped me rather than showing me support.

I was mostly a rule-follower, insofar as there were rules at all. However, as a teen, I became secretive. I actually had my father drive me to a meeting of people with mental illness when I was seventeen, while I’d led him to believe it was a disability meeting (because one of the people there was in a wheelchair). I’m pretty sure he knew, but he never confronted me.

I don’t have children of my own, so I cannot say whether my upbringing influenced the way I discipline them. However, I did find I got easily triggered when I got the impression my sister and brother-in-law used corporal punishment on my older niece (this was before the younger one was born). Thankfully, they were able to reassure me that they didn’t.

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.

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.

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?

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.