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”.

#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?

Solo: Making the Most of My Alone Time

Posted on by Astrid

Today’s prompt for #JusJoJan is “solo”. It has many meanings, but the overarching one is “alone”. For this reason, I thought I’d use this as an opportunity to write about ways to make the most out of my alone time.

You see, I don’t really do well with alone time. It makes me anxious. At the same time, I need alone time. It helps me recharge. How can these two coexist, you might wonder. Honestly, I’m not quite sure.

However, the more important question is, how can I make sure the recharging effect gets the upper hand rather than my anxiety? The key to this is making the most out of my time alone.

In my old day schedule, I had random slots of alone time that could last anywhere between 15 and 60 minutes, sometimes longer if I didn’t come out of my room to alert the staff. This caused intense anxiety, because I never knew when I’d have time alone and, when I did, how long it’d last. This meant I didn’t know what activities to do during my alone time.

Now though, I usually have time slots of 30 to occasionally 45 minutes alone. In all honesty, I think the 30-minute time slots could be lengthened to 45 minutes if they could be decreased in number and by extension my time slots of activity lengthened too. This isn’t likely possible at my current care home though.

During the time of my old day schedule, I used to feel stressed when alone and as a result use up the time by wandering around my apartment. Now I occasionally still do this, but I try to put each moment of alone time to good use. For example, Bible study and blogging are things I can’t do when a staff person is in the room. I do these when I have alone time, but sometimes I struggle to finish them off during my 30-minute solo time slots. At the same time, I struggle to find meaningful activities that I can do within my 60-minute time slots (which are usually cut short) of one-to-one support. Part of the reason is my need to get into a routine – for example, of gathering my polymer clay supplies. Part of it is the fact that some staff start out by proposing a certain activity, which makes it hard for me to switch to wanting something else. And part of it is probably my mindset too, in that I get overwhelmed with not knowing how long an activity will take and thinking I “only” have this amount of time. This applies to alone time too.

I often say that, in an ideal world, I’d have one-on-one all the time. This isn’t true. In an ideal world, I’d have good chunks of alone time with staff only popping in once every 45 minutes (because otherwise I’d lose track of time), so essentially no extra care then, during later evenings and part of the weekend. I’d also have good chunks of supported activity during the day. Oh wait, that’s pretty much how I had it in Raalte and I was going to let go of comparisons with old homes. No, wait again, my day schedule back there wasn’t ideal either. But it allowed for longer chunks of activity time during weekdays and that’s really what I dream of.

Joy in December

Posted on by Astrid

Hi all on this chilly, rainy last Friday of 2022. Today I’m sharing my last update on my word of the year, which is “JOY”. I’m joining the Word of the Year linky as well as Lisa’s One Word link-up.

The month of December started out with something that would have brought me exhilirating joy under different circumstances but brought just a weak smile to my face now: a visit from my two former day activities staff, complete with a full-on lunch buffet paid for by them. I honestly feel a bit guilty for possibly having ruined their meal with my talks of how much I was struggling in the care home. Then again, to be fair to myself, this was just a day after I’d hit the proverbial brick wall.

The next week saw some glimmers of hope, as my now assigned staff (yay, they finally assigned me a staff other than the support coordinator) convinced me to give a new day schedule a try. This finally gave me some opportunities for crafty activities.

Then on the 23rd, I had the meeting with my now assigned staff, the behavior specialist, my mother-in-law and the mediator. This again gave me some glimmers of hope.

Oh wait, “HOPE” wasn’t my word of the year for 2022. It was “JOY”. And I found joy even when the times were trying. A helpful resource in this has been a sheet of paper with two sides on it that I fill out each evening: on one side, I can list two things that didn’t go too well during the day, but on the other, I need to list two things that did go well. Yesterday’s things that did go well included several nice walks and having finished crafting a polymer clay unicorn. After giving it its finishing touches, I just gave the unicorn to my assigned staff, who for the most part helped me create it.

Overall, the month of December definitely included some important reasons for joy. I am also generally pleased with the word I chose as my word of the year. Even though later in the year it was quite a struggle to find joy, I liked to look for opportunities for it in the ordinary.

The Wednesday HodgePodge (December 28, 2022)

Posted on by Astrid

Hi everyone. It’s the last Wednesday of 2022, so I’m joining Joyce for the Wednesday HodgePodge. Here goes.

1. Did you set any goals for the new year this time last year? Did you meet them or miss the mark? Tell us more if you’re comfortable sharing.
I don’t set goals. Instead, I call them hopes. That removes the pressure, but they’re pretty much the same. I shared my hopes for 2022 on January 1. For the most part, I sort of reached them early on but completely started falling off course after the move to my current care home. I’m slowly getting back on track.

2. What are three words that might describe the kind of person you were this past year or describe in some way how your life looked?
Transition, stress, creativity.

3. What’s something new you ate, saw, heard, or experienced in 2022? What did you think?
This year was a massively transitional year, since I experienced the move to what I thought would be my dream care home but initially turned into a nightmare. It’s slowly starting to get better though. As a result, I experienced many new things. A tiny one is the fact that I ate mash for the first time in a looong while.

4. Oxford Dictionary has announced it’s word of the year for 2022, and it’s this-goblin mode. Huh? Have you ever heard this phrase? Used this phrase?
No, never heard of it until now. Consequently, I have no idea what it means and honestly don’t know whether I want to know. Oh wait, no, I don’t want to find out, as I just saw that Joyce had the definition written out and I skipped over it. Or maybe now I do want to find out.

If you were in charge, what word would you declare word of the year for 2022?
Russification, if that’s a word in English too (it is in Dutch). We need to be aware of what’s happening in Ukraine and especially the parts of it completely under Russian control, like Mariupol.

5. Any special plans for an end of year celebration in your house or town? The travel channel says the world’s best New Year’s Eve celebrations will happen in Copacabana Beach-Rio de Janeiro, the Orlando theme parks in Florida, London, Sydney, New York’s Time Square, Edinburgh Scotland, and Paris. If you could attend any one of these which would you choose? Tell us why?
I will be going to Lobith for New Year’s . My husband just ordered a waffle maker online so that we can make waffles then. He also said he bought Airfryer snacks.

If I had to choose any of these destinations to visit during New Year’s, it’d be Sydney because it’s summer there right now. Then again, I don’t have any desire to visit there otherwise. I would like to go to Edinburgh someday, but not in winter.

6. Insert your own random thought here.
I’m probably going to end the year on a positive note, as my support coordinator returned from her vacation yesterday and did part of my one-on-one this evening. That’s not the positive news. The positive news is the fact that she said my day schedule is good as it is.

Happy Homemaker Monday (December 26, 2022)

Posted on by Astrid

Hi everyone. Today I’m joining Happy Homemaker Monday. Okay, regular readers of this blog will know that I’m not a homemaker. However, my staff, particularly one of the student staff, are trying to get us clients at the care home more involved in the homemaking process. For example, coming in the new year, we may be able to actually help prepare our own meals once a week. (For those not aware, we do get home-cooked meals everyday here and I actually have reasonably good meal prep skills when supervised, but up till this point the staff always cook our meals because it’s quicker.) We will also get our own vegetable garden this spring.

Because we’re required to title our post “Happy Homemaker Monday” and Sandra never got back to me when I asked whether we’re actually required to be homemakers to participate, but the questions do speak to me, I’m not sure whether I’m actually allowed to link up. However, I’m just going to give it a try and if I get kicked off, so be it.

The weather: rainy most of the time and cloudy all of the time. I don’t like it, but am not sure which I find worse: this rainy but relatively mild winter weather or daytime temperatures below 0°C. Let’s just say I can’t wait for spring.

As I look outside my window: well, I have my curtains drawn as it’s evening here and I’m blind so can’t look out my window really. Oh well, I do have an outdoors light outside of my bedroom window which I can see when I have my curtains open and it’s dark outside, which it currently is. It’s probably not interesting enough for sighted people that you guys would want a picture though. Besides, no clue what setting I’d need to set my simple cellphone camera to in order to do this.

Right now I am: typing this blog post. I’m sitting at my desk in my living room. This is really the only place I can comfortably type.

Thinking and pondering: still worrying about my support coordinator doing away with everything agreed upon in the meeting we had on Friday about my care. I received the summary of what was discussed in my inbox on Saturday and it was indeed good. This means I wasn’t dreaming that everyone in the meeting at least said they were on my side. Still, my support coordinator is still on vacation and, even though several staff have been saying she can’t tear apart my day schedule, I’m still kind of worried. Planning to ask the other support coordinator for reassurance later this evening.

How I’m feeling: worried but grateful. Cautiously optimistic too.

On the breakfast plate: four slices of bread with chocolate spread. I normally eat two slices when I do eat bread, but I was in Lobith (at my and my husband’s house) and wasn’t sure I’d be back at the care home for lunch.

On the lunch plate: I had a currant bun and a regular, plain bun. I also had water and I really need to stay more hydrated.

On the dinner plate: I have absolutely no idea how to translate what we had for dinner into English. First, we had a “rundervink”, a kind of beef mince wrapped in bacon. We also had potato tarts. And the kind of salad we had, well, I’m clueless as to what it even was supposed to be. Truthfully, Christmassy (we celebrate Boxing Day as an additional Christmas day here) as it may have been, I didn’t like it. One of the positives about us clients being allowed to help meal prep, is that we finally get a real say in what we’re going to cook.

Listening to: the Healing Harps playlist on Spotify. Not currently – right now, like most of the time, I’m just hearing my text-to-speech software speak and the heating or something buzz -, but it’s the most recent interesting thing I listened to. I love it when trying to sleep or rest.

Watching: polymer clay tutorials on YouTube.

Reading: a Dutch collection of columns by a businesswoman turned special ed teacher. I just finished a book of stories by a Dutch ER doctor. I’m wanting to read more English-language collections of real-life stories too, but not sure where to start.

Around the house: did I even ever share here that my apartment at my current care home has a separate living room and bedroom? I also have a pretty large bathroom and a walk-in storage closet, as well as an enormous terrace. Now that it looks like I’m not going to look for another care home after all (at least not within the near future), I may want to look towards actually making my apartment into a home-like place. I really hope to learn to take better care of it in the new year, which includes keeping it relatively clean and organized but also nicely decorated.

To-do list: I don’t really do those and didn’t make any plans for the next day or even next hour until very recently due to the nature of my support here. Now, thanks to my improved care, I can start actually having a bit of a to-do list. On it currently is finishing the polymer clay unicorn I started crafting with my assigned staff on Friday.

What I’m creating: just cured some polymer clay bear-shaped pieces that I’ll turn into earrings later, as well as a number of beads (well, I’ll still need to drill the holes). This evening, I crafted a turtle out of polymer clay, which is still waiting to go in the oven until I can cure it together with the aforementioned unicorn.

I still have a lot of finished polymer clay creations I didn’t show you all too. My most recent one is the below snowman.

Bible Verse/Devotional/Prayer/Quote: I am struggling with my faith quite a bit lately, so here’s a space for me to pray. God, help me see Your presence. I’m struggling to feel Your nearness lately. Please help me realize that You are there for me even as I go through these hard times, or especially then, or… well, oh wait, that You are always there. In Jesus’ name, Amen.

Some Glimmers of Hope

Posted on by Astrid

Hi everyone. It’s once again been a week and a half since I last posted. This week and a half hasn’t been boring at all. In fact, it’s been filled with events that triggered all kinds of emotions in me.

Last week Saturday and again on Monday, I had some very difficult conversations with my assigned staff. She turned out not to mean things too badly, but just got very frustrated with my trouble understanding non-literal speech. We also once again ran in circles about this home being very different from the home I come from and my being used to the old home and never getting it like that here. I know, I don’t expect things to go precisely the same as they went there, but there’s something between the way I was treated at my old home and the very harsh way I’m treated here.

These conversations got me so frustrated that I started thinking I may need to get an independent client supporter to help me find another home. After all, moving to another home within my current care agency, isn’t an option.

Then on Wednesday, a staff told me about her plans for getting day activities rolled out at this home. I’m not sure I can participate in all of them, but some I can take part in. This staff also assured me that my assigned staff is completely on my side.

This also became clear when I had the meeting with the mediator, my assigned staff, the behavior specialist and my mother-in-law yesterday. My assigned staff admitted that some (most, in my experience) of her coworkers treat me just like they treat everyone else at this home. Apparently the harsh approach is what the others need, but I don’t (unless I for instance insult a staff member, which only happens during a severe meltdown, 99% of which can be prevented with the right support). We agreed that my signaling plan (for preventing and averting crises) will be revised, but the behavior specialist assured me that for the most part it can stay the same. After all, she said I haven’t become a different person since moving here. That felt validating.

I positively told the people attending that, since implementing my new day schedule, things have significantly improved. I also told them I realized this may be all I can expect of the staff, so I am (trying to be) all happy when it goes smoothly. However, when it doesn’t go smoothly – for example, when the staff are frequently late for my assigned support times or leave me alone beyond my assigned alone times more than occasionally -, I’m not happy. It gets worse when the staff justify their tardiness or leaving me alone beyond my assigned alone times with some comment about my not having (full-time) one-on-one. Their reasoning is that, since my one-on-one isn’t full-time, I essentially don’t have one-on-one at all and can just expect staff to pop in whenever they please. Their terminology is a bit screwed (I think I explained it in a previous post) and it irks me beyond belief. I know I don’t have full-time one-on-one and I don’t expect it, but I do have the day schedule for a reason.

Both the behavior specialist and my assigned staff validated my need for the day schedule and for staff to stick to it. I said I understand that a severely challenging situation among my fellow clients could be a factor preventing this, but the behavior specialist said this shouldn’t happen more than a few times a week. Currently, it’s usually at least once a day (and I obviously don’t mean the times my staff is running like five to ten minutes late for my support). My assigned staff actually went so far as to say the extra staff is there primarily for me. She is going to clarify this and some other things in a basic info sheet on me that all staff can read when starting their shift with me.

Altogether, the meeting gave me some glimmers of hope. It remains to be seen whether the staff actually do something with what came out of it. I do still have my worries about my support coordinator overriding all this once she returns from her time off. Then again, I am pretty sure that, if the behavior specialist actually means what she said, my support coordinator can’t really do that.

Re(dis)covering My Creative Self

Posted on by Astrid

Today I crafted a dachshund out of polymer clay. I haven’t put it into the oven yet, as I still want to create other things before baking them all together. I sometimes feel a rush to create, create, create as who knows when this will end? In two weeks’ time, my support coordinator will be back and may decide to put my old day schedule back in place, in which I had only one tiny moment when I could possibly choose to work with clay, inbetween my morning coffee, a long walk and my lunch.

I am taking baby steps towards becoming my creative self again. This blog post is part of the process, as writing too is part of creativity. I notice my writing suffered significantly due to the chaos that was (and may become again) my support at my current care home. I know I’ll still have lots of time to write if my support coordinator puts my old day schedule back in place, but time isn’t the only factor. Inspiration is, too. And when all I do is try to survive from moment to moment – the staff’s terminology for the times they step in to support me -, I am not able to be creative at all.

I am really trying to look at these few weeks as an opportunity to re(dis)cover myself as a creative person, not just as a disturbed, manipulative yet oh so intelligent person, like most of the staff see me. My hope is that the staff who see me as primarily oh so intelligent yet disturbed and manipulative, will soon realize that, with the right support, not only will those “disturbed” behaviors lessen, but I will be able to show them my artistic side. If not, I am hoping that, soon enough, the staff who do get me will be able to convince my support coordinator and those who agree with her that this is not the right place for me. They have seen a glimpse into what I can be like when I am properly supported and I am cautiously optimistic that they can help me maintain this sense of myself, regardless of what happens when the support coordinator returns from her time off.