January 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone on this final day of January. Last year, I loved looking back on each month as it related to my word of the year. I didn’t choose a word of the year for 2023. Not sure why, but I just couldn’t find one. I however do like these monthly reviews, so I’ll continue them. The monthly word of the year linky has also changed to #WBOYC, which is an acronym for What’s Been On Your Calendar. I’m joining in with this linky today for my monthly reflections.

This month, I started out with mixed feelings of hope and fear for the coming year. Just before New Year’s, my assigned staff had introduced the piece of paper with agreements re my care on it, which was slightly disappointing to me because of it being easy to interpret in multiple ways. As the weeks proceded, I found out that, indeed, it didn’t do much to improve my care. In fact, I still live moment-to-moment, not because I can’t get through each moment due to my mental health, but because the staff and home in general are so unpredictable.

Several weeks ago, I decided I definitely want to find another care home. This, obviously, requires a talk with the behavior specialist and support coordinator, but, so far, my support coordinator hasn’t responded to requests to share when she is available. I have it in my head she’s decided to ignore me until I shut up about wanting to leave. After all, several staff have started to talk nonsense about baby steps towards adjustment, and I’m pretty sure they don’t mean the steps towards adjustment should come from the staff. Even though I do experience good enough days here and there, I won’t shut up though until structural changes mean good enough is going to be the norm, and I’m sure this isn’t going to be here.

In other news, I had three visits from my mother-in-law during the month of January. I also saw my husband almost each week – missed only one because I had a cold.

I started working with the book The Artist’s Way at the end of the month. I’ve only just started with Morning Pages and am taking the program at a slower pace than is recommended, partly because I’m a slow reader and partly because I need to modify the Artist’s Dates to suit my needs. For example, since I don’t handwrite my Morning Pages, I have no reason to give myself a sticker on the envelope each day I completed them, and I can’t use regular stickers anyway. However, I saw 3D unicorn stickers and want to buy those and stick one on my laptop for each day I complete my Morning Pages for a week. Of course, since they are sold online, I may need to have them delivered to my in-laws because my care home’s address isn’t always recognized by delivery people. I’ll get to that tomorrow.

I wasn’t as crafty as I’d like to have been, but did slightly expand my horizons where it came to polymer clay, in that yesterday I started on a unicorn in a lying-down position and today I tried to decorate my latest standard, sitting unicorn with Hotfix rhinestones.

I didn’t write as many blog posts as I’d hoped during January. Of course, there was #JusJoJan, but even when the prompts did speak to me, I often didn’t write. I am still considering participating in #Write28Days in February, but honestly haven’t written anything for it. Not that I had any of the previous years I took part either, but then I was more motivated.

I did for the umpteenth time revive my Instagram account. This time, I’m actually finding some joy in it, because I actually find that I can interact with some people on there.

In the health department, January was a true mixed bag. I did get moving sufficiently, particularly walking, but healthy eating was a huge struggle. Over the month, I maintained my weight, so still 3kg to lose for me to be at a healthy BMI.

Lastly, I did attend the cerebral palsy online meeting for the provinces of Gelderland and Utrecht this evening. It was good. There will be a live meeting in March, so I’m hoping to go there too.

#WeekendCoffeeShare (January 28, 2023)

Posted on by Astrid

Hi everyone on this last Saturday of January. I’m joining #WeekendCoffeeShare today. It’s 9PM here, so I already had my last cup of coffee for the day about two hours ago. I also tasted a new drink I think I like: vitamin water. I am not under the impression that there’s all that many vitamins in it, but who cares? Anyway, let’s have a drink and let’s catch up.

If we were having coffee, I’d start out by asking about your weather. Ours has been cold, with daytime temperatures barely above freezing point. It’s not been raining or snowing though and today in fact it was quite sunny.

If we were having coffee, I would ask how you all are doing. I’m still struggling in my care home. Last week (or the week before, I can’t remember), I hit another low point and my mother-in-law sent an E-mail to the behavior specialist telling her I basically don’t want to stay here. The behavior specialist was going to try to schedule a meeting between me, my mother-in-law, her, my assigned staff and the support coordinator, but I haven’t heard anything so far.

If we were having coffee, I would tell you that I’ve finally been working with polymer clay again. It’s been a while. On Wednesday, I created a bull’s eye cane. That was too frustrating for me and I nearly gave up on polymer clay altogether because of it. Thankfully, in the Dutch polymer clay group as well as an unrelated FB support group, people encouraged me to continue with what I can do well, which is sculpting. This helped me to get moving and create yet another unicorn. Oh well, it’s the same style as all my other unicorns, but I intend to decorate it with Hotfix rhinestones.

I originally intended to go to a store for Hotfix products near here with my mother-in-law on Tuesday. Then someone from the Dutch polymer clay Facebook group offered to send me some samples to try. That’s so kind of her!

If we were having coffee, lastly I’d share that I haven’t had a healthy dinner all week. The reason is the fact that the care home’s kitchen is being renovated and so we can’t use it at all. The only day I had the option of a healthy dinner was today, but I can’t stand soup and certainly not pea soup. For clarity’s sake, there is a kitchen the staff can use at the day center, but all week except today they for whatever reason chose easy-to-whip-up but unhealthy alternatives such as pizza delivery, microwave pancakes or bread with Russian salad.

How have you been?

Ideal Isn’t Real

Posted on by Astrid

Today is the day the word I picked for #JusJoJan was assigned to, so I’m pretty much obliged to write a post. My original choice for a word was “Home”, but I made up my mind as I wrote my comment on Linda’s post and chose “Ideal”. My plan was to then write about my ideal care situation.

I am not sure I can do it though. An ideal situation, after all, doesn’t exist and chasing it may mean I lose sight of the things I could appreciate in what I already have. That’s possibly what happened with the move to my current care home, much as I struggle to admit it.

Of course, I knew there were going to be drawbacks to this care home, but I minimized them in my mind. When, back in like late 2021, I read up the information on this care home on my agency’s website, it sounded ideal. In fact, I remember at one point telling my staff and some people on an E-mail support group I belong to that it was my dream care home. But that’s judging from a promotional webpage, not reality.

Then when I actually got the opportunity to go here, what I found out on my visits here indeed revealed some more negatives. However, for the most part, these were vague “gut feeling” negatives, not facts. A factual negative was the fact that staff here don’t tell us clients who will be on shift the next day, reasoning that they might fall ill. “But we all come back,” the support coordinator reassured me, “and if we don’t, we’ll tell you.” Well, the one time a staff left so far, I didn’t find out in advance.

Maybe, looking back, there were clearer signs than just my gut feeling that the dream care home was going to turn into a nightmare. I am not sure. Maybe I didn’t ask the right questions. Maybe the staff – purposefully or not – avoided answering the real questions, focusing instead on details. Either way, I can’t help it now. What I can do is never believe something is going to be ideal again. Ideal isn’t real, after all.

Gratitude List (January 21, 2023) #TToT

Posted on by Astrid

Hi everyone. I’m once again (or still) struggling a lot. Each time I think I see a glimmer of hope, it gets crushed one way or another and the bottom line is that I’m probably stuck in this dark pit for a while still. For this reason, I thought I’d do a gratitude post once again in order to remind myself there are still positives out there. As usual, I’m joining in with Ten Things of Thankful (#TToT).

1. I am grateful for Apfelstrüdel. This is, or so I believe, a German type of baked goods with apple and cinnamon. Last Sunday, my husband and I went to have lunch at La Place, a type of restaurant, and their Apfelstrüdel was on sale. Even though it’s sweet, I decided to have it as my main part of the meal.

2. I am grateful for a trip to Action, a discount store, with my husband on Sunday. I bought cleaning wipes, toothpaste and crocheting supplies.

3. I am grateful my assigned staff is back at work after being on vacation for a couple of weeks.

4. I am grateful for another visit from my mother-in-law on Tuesday. It was good.

5. I am grateful for apples, bananas and blueberries. We didn’t have fruit during most of the week, so on Sunday, I bought apples and bananas when at Aldi with my husband. Then on Tuesday, I bought blueberries. I am grateful that, on Tuesday, my mother-in-law reminded me to buy my own peeling knife. You see, the care home’s kitchen is being reconstructed, so all kitchen supplies are in boxes. Had I not bought the peeling knife, my staff wouldn’t have been able to peel and cut my apples.

6. I am grateful for sleep. Over the past week, most days, I got at least reasonably good sleep.

7. I am grateful my cold, which I’ve had all week, seems to be getting a little better. At least I’m not sneezing like crazy anymore.

8. I am grateful my husband ordered new walking shoes for me, to be delivered to my in-laws today. He isn’t coming by for a visit tomorrow because of my cold symptoms, but will bring them along next week.

9. I am grateful a staff helped me manage the chain stitch of crocheting today. I already had some practice with it before, but it was always hit and miss. I am hoping to learn some more stitches someday once I get confident working with this one.

10. I am grateful for a long walk this afternoon. I am also grateful that, despite having limited energy this morning, I was able to have a relatively good time for most of the day.

What are you grateful for?

“You’ll See Someone At Some Point.”: Autism and Day Schedules

Posted on by Astrid

I have been thinking a lot about my day schedule lately. It’s okay. Not good. Far from perfect. My assigned staff gets slightly annoyed when I point out it’s far from perfect. She thinks – and I honestly can’t blame her – that it wouldn’t be perfect until I got one-on-one 24/7. I at one point actually told my staff so (well, not exactly 24/7) – which is why I can’t blame them for thinking this. It’s not true though. I need time to sleep, to blog, to read and just to be by myself. I would indeed go crazy if I had someone in my room around the clock.

In fact, when I was talking to my home’s behavior specialist on Tuesday, I told her I could do with longer periods of alone time than the 30 minutes at a time I have now. That is, if staff stuck to the, say, 45 minutes we agreed upon. In fact, I’d love that, as 30 minutes isn’t enough to do any sort of longer meaningful activity alone, like blogging. By extending my alone times from 30 to 45 minutes (or occasionally longer), I could then lessen the number of them and by extension have longer times of supported activity, so that I could actually do something like do a bigger clay project.

This, obviously, isn’t possible at this home. Not only because staff need to leave my room at least every hour for one thing or another, but also because they need to switch as often too, sometimes without warning.

This is where I get really annoyed. I mean, I know that most pro-neurodiversity autistics despise day schedules, but mostly (I assume) because they are imposed upon them in behavioral settings etc. I actually thrive on a day schedule, but it has to be followed. I personally don’t mind Colette de Bruin’s system of What, Where, When, With Whom and What after that, as long as I have a say in the contents of my day schedule.

In my case, the “Where” is usually clear, although it does happen sometimes that I get taken into the communal room without having been given a choice, because “it’s fun”. The “When”, not so much. I do have times on my day schedule, but these are “approximates”. A few days ago, when we didn’t have dinner until six o’clock, whereas the regular time is five, this “approximate” was used against me. I don’t call that approximate.

The “With Whom” isn’t clear at all. Staff don’t tell us clients who will be working the next day or even late shift when it’s still morning, because someone might get sick. This isn’t the worst though: there are four staff in the home for each shift and they switch about randomly. I call that chaos for chaos’ sake.

Today, I called out a staff on the website’s info about the home, which claims the staff know autism. “We do know autism,” she said. Well, if she did, she wouldn’t be constantly telling me: “You’ll see someone at some point,” when leaving my room for my “time by myself”.

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.

Lord, Please Lead Me: A Prayer Poem

Posted on by Astrid

Lord, please lead me on this journey,
guiding me every step of the way;
so that I may not wander,
and I may not run astray.

God, I will follow You wherever
in this life I’m supposed to go,
but please take me by the hand
and show me what I need to know.

I pray I will find comfort (at last)
in Your loving arms.
Please show me I am right to trust You;
Show me You are the God of warmth.

God, I feel so lost and lonely,
like no human soul sees what I truly need.
In Jesus’ name, I ask you,
will you help me when I take Your lead?

This poem was written for this week’s Six Sentence Stories link-up. I have no idea whether any other Six’ers are believers, so I was initially going to post this at the top with a note that my poem is Christian in nature, but then I decided the title should speak for itself.

#WeekendCoffeeShare (January 8, 2023)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today, even though I already had my last cup of coffee for the day. I’m going to have a glass of water with my evening meds probably while in the middle of this post. Want a drink too? Maybe I can convince the staff to get you a diet soda. I can’t stand them myself and we rarely have Dubbelfrisss, my favorite drink that isn’t water, coffee or green tea, here. Anyway, let’s (pretend to) have a drink and let’s catch up.

If we were having coffee, I’d tell you that my New Year’s went okay. I went to Lobith. Like I think I mentioned, my husband ordered a waffle maker, so that we could have our own, homemade waffles. Not all turned out as they should, but we had enough of the ones that did turn out good. We spent the evening on the couch watching semi-random YouTube videos, as neither of us wanted to watch the annual New Year’s comedy performance. According to my husband, YouTube decided what we were watching, as he probably had autoplay on. By 11:30PM, both of us were too tired to wait for the clock to strike midnight and we didn’t fancy neighbors coming by to greet us either, so we went to bed.

If we were having coffee, I would share that the first week of the new year has been hard. The home has been short-staffed and many of my fellow residents have been struggling with post-holiday dysregulation. For these reasons and probably others, I am experiencing a lot of disruptions to my care again. I have had quite a few meltdowns lately. I haven’t been as severely self-harming as I was back in late October and November, but quite honestly I’m feeling almost as desperate and the only reason I’m not feeling exactly as desperate is the fact that at least on paper my care is still kind of okay.

If we were having coffee, lastly I would share that my youngest sister-in-law turned 30 yesterday. I am thankful I was able to craft a polymer clay horse for her. Well, not anything like an actual, anatomically correct horse; really just a unicorn like the ones I usually craft but without a horn. My sister-in-law’s real, living horse is called Wolympia, so I called the polymer clay one Polympia. Sadly, I forgot to take a picture before giving it to my husband to give to her.

How have you been?

Gratitude List (January 7, 2023) #TToT

Posted on by Astrid

Hi everyone. I have been struggling a lot lately. I am not the only one in my home – last night, everyone was irritable at least. This among other things caused me a lot of anxiety. To counter these feelings, I’m doing a gratitude list. As usual, I’m joining in with Ten Things of Thankful. Here goes.

1. I am grateful I haven’t caught a cold or the flu (or COVID!) so far. Everyone around me seems to have come down with something. Though cases of coronavirus are on the rise generally too, it seems to be mostly the common cold or flu around here, thankfully.

2. I am grateful I am currently on track with the Bible-in-a-year plan I’m following. Okay, it’s been only a week so far and, though I hope I’ll continue to follow through with it for the entire year, I am not too confident in myself about staying on track. At least I don’t plan on quitting.

3. I am grateful for a visit from my mother-in-law last Tuesday. She initially didn’t plan on visiting this week but thankfully changed her mind because I was already struggling a bit.

4. I am grateful for licorice. I bought some when at the supermarket with my mother-in-law and thankfully put it in my basket in the storage room so that I cannot reach it by myself. For this reason, I still have some left.

5. I am grateful for French fries yesterday. A fellow resident had his birthday, so the staff went out to get us fries and a snack.

6. I am grateful my UTI has gone. Not that I notice any difference in my body’s signals – I wasn’t picking up that I had it and, when I thought I had figured out what its symptoms were, I figured it still wasn’t over. However, I’m glad it’s cleared.

7. I am grateful I was able to teach several staff how to play the card game mau-mau. It was fun.

8. I am grateful for relatively mild weather.

9. I am grateful that, when everyone was irritable and several of my fellow clients were in crisis at night yesterday, the support coordinator stayed in the home for the night. I am grateful that I slept okay’ish in spite of several clients being out of control in the middle of the night.

10. I am grateful a nice staff was my one-on-one staff this evening. I am also grateful another nice staff popped in to say hi every now and again. Lastly, I am grateful that, this evening, my day schedule wasn’t disrupted.

What are you grateful for?

A Child Called “Baby”

Posted on by Astrid

Today, Emilia of My Inner MishMash asks us about our name. How do you feel about it? Do you know where yours came from or why your parents picked it?

I probably shared this before. In fact, I did indeed write about this topic in 2019. I didn’t bother to actually look up the post until finishing this one though, so well, here’s the story again through a 2023 lens.

When I was born, my parents didn’t have a name picked for me yet. The reason is the fact that I was born three months prematurely. As a result, for a few hours, the name plate on my incubator read “Baby Van Woerkom”. According to my mother, my father was so displeased with this that he quickly came up with a name (or picked one from the names they’d been discussing among each other). And thus I was named Astrid.

Of course, my parents do have a story of why they named me Astrid. Apparently, I am named after Swedish author Astrid Lindgren. Similarly, my sister was named after Sigrid Undset.

I do like my name, sort of. I like its relative uniqueness. I don’t like the fact that it’s hard to pronounce in English, but I do like the fact that in English-language literature for this reason I hardly come across characters named Astrid. I avoid books when I know they have a character named Astrid in them.

I don’t have a middle name and yet, I always wanted one. As a teen, I’d pick random middle names that bore neither an etymological nor a linguistic similarity to “Astrid”, such as “Elena”. Now if I had to choose a middle name, I’d go with something that also has its origin in northern Europe but is relatively easy to spell and pronounce in Dutch and English, such as “Kirsten”. I liked that one back as a teen too but didn’t use it as often. The name “Kirsten” is Christian in nature though, while “Astrid” has Pagan connotations. However, I don’t really care. The combination might actually signify the importance of the Christ, as the name “Astrid” means something like “beautiful God”.