“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 just “Baby”. 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”.

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.

God Created the Stars

Posted on by Astrid

Yesterday, I started for maybe the fifth or so time in a Bible-in-a-year plan. However, this time, unlike any of the other times, I didn’t just try to read the Bible cover to cover. In fact, I’m not reading it cover to cover at all. Yesterday’s assigned chapters included Psalm 1, Matthew 1 and of course Genesis 1. The plan also included commentary in the form of a devotional. The verse I want to talk about now is in Genesis 1.

“God made two great lights—the greater light to govern the day and the lesser light to govern the night. He also made the stars.” (Genesis 1:16 NIV)

The part the plan writer highlighted, was the last bit about the stars. He commented that there are literally billions of stars in our galaxy alone. I had no idea! However, isn’t this fascinating?

Whether the Biblical account of creation is literally correct, is beside the point. It isn’t about when or how. It is about who and why. And the “who” in the Bible is God.

I think it’s quite amazing that God created an entire universe, complete with constellations and constellations of stars, and put humanity at the center of it. He could just as easily have chosen anything else. Maybe if He’d chosen another living creature, it wouldn’t have ruined the planet and beyond as much as we do.

But God has His reasons for having chosen us. And having allowed us to mess up. I’m not yet sure what they are. Maybe I’ll never find out. It’s a fact of life though that we – all of us – mess up. That’s why we need Jesus.

And maybe God’s reason for having put us at the center of the universe and yet having allowed us to mess up massively, isn’t about us at all. We tend to make everything about us, after all, both individually and as a species.

Maybe by Godly standards, we aren’t as important as we think. In fact, I’m pretty sure that most of us overestimate our importance and underestimate our shortcomings precisely because we measure ourselves by human standards. At least I do. And yet by Godly standards, only one human (Jesus) met the bar. My defiant side says this isn’t fair. Yet it only isn’t fair if we put ourselves at the center of the universe. If we put Jesus at the center, it is most definitely fair.

I am joining in with #JusJoJan, for which the prompt today is “constellation”.

I’m also linking up with Inspire Me Monday.

My Hopes for 2023

Posted on by Astrid

Hi everyone and a happy 2023 to you all! Regular readers of my blog know that I don’t do resolutions or new year’s goals. Instead, I call them hopes. Whether that isn’t just the exact same but worded slightly euphemistically, is up for debate. However, I found that, many years ago, when I did lists of resolutions, they didn’t work out. Now that I call them “hopes”, I usually probably subconsciously stick to them more. I say this every year as an introduction to my hopes.

This year, I haven’t actually thought of many hopes I have. That is, I do hope to achieve many things, but secretly I do think my “hopes” do need to be somewhat realistic in order to make it onto my new year’s list. Doesn’t that make them just like goals? Oh well, I guess so. With no further ado, I’m just going to write down the things I hope to achieve in 2023.

1. Get to a healthy weight. I never dreamt of writing this when I started my healthier eating journey at the beginning of 2022, but I lost over 10kg in 2022 and I’m only 3kg above a healthy BMI now.

2. Keep up my movement routine. I have my movement goal on my Apple Watch set pretty low at 300 active calories a day. I’d really like to surpass it regularly.

I would also like to improve on the parameters of my physical fitness level, such as my heart rate variability. These are all really low right now.

I am hoping to start actually exercising in other ways besides walking. I’d love to start swimming here on institution grounds.

3. Get to a more stable place mentally. In 2022, I hoped to remain stable mental health-wise, which got ruined by my choice to move and its consequences. Now, I’m hoping to get back to a place of relative calm again.

4. Further lower my antipsychotic dosage. I really hope the move to my current care home doesn’t mean I’m on 25mg of aripiprazole forever.

5. Get to a meaningful day structure and day activities. Okay, I have the new day schedule, which is better than the one my support coordinator gave me, but it’s not what I’d hoped for when I came here. I am really hoping to explore day activities beyond my room, beyond 60 minutes at a time and beyond one-on-one.

6. Write regularly. This is another thing I was pretty awesome at in 2021, hoped to maintain in 2022 and lost track of due to the move. I even only wrote five blog posts during the month of November. I am really hoping to get back into the writing groove this year.

7. Further explore my creative side. I’d really like to find ways to do part of my polymer clay work independently, so that I can actually do more complicated things with my 60-minute time slots of supported activity.

8. Socialize more. This was one of the main reasons for the move, at least according to the behavior specialists involved. Indeed, it is a positive aspect of my current home that wasn’t there at my old home. I honestly don’t know whether I can socialize much with the people at my home, but I can at least try and, if that doesn’t work out, there are almost 400 other residents here at the main institution. I’d really love to talk to some of them more.

I’d also love to connect to my peers in the cerebral palsy community more. I’ll hopefully attend the countrywide cerebral palsy day again in April and also hopefully join the online meetings more often. I’m also hoping to get in touch with the Eye Association more. I know this was something I hoped to achieve in 2022 but didn’t.

9. Get serious about the basics of my faith. I had a discussion about faith with my husband yesterday and the bottom line was that I tried to run without having learned to crawl, so to speak, because I was watching John MacArthur videos, which are deeply theological, even though I’m really still a new believer. I mean, okay, I’ve been a Jesus follower for two years, but I’m still struggling with the basic concepts of the Christian faith. That’s probably why I call myself a “progressive Jesus follower” rather than unapologetically claiming my identity as a Christian. I really hope to move closer on my journey towards God in 2023.

I am linking this post up with today’s #JusJoJan post, for which the optional prompt word is “resolution”. I am thinking of writing another post about resolutions in a different sense, namely the Model European Parliament debating contest I participated in during high school. However, it’s past 9PM so I don’t think I’ll have the time or energy for another blog post.

2022: The Year in Review

Posted on by Astrid

Hi everyone. It’s the last day of the year, so in keeping with my tradition, I thought I’d do a review of the past year.

I started 2022 by reviewing the forms for my extra care funding application – my extra care had just been re-approved for two years at the end of 2021 – with the behavior specialist. “Extra care” is what I usually refer to as “one-on-one” here, but I’m told by several staff that it’s not technically one-on-one if it’s not full-time one-on-one. Whether that’s true, I don’t know. I made some suggestions for when the application had to be submitted again in two years’ time. With how much has changed over 2022, I doubt any of it will be relevant anymore.

I also started the year with a healthier food plan and by seeing a dietitian. Over the course of the next nine months, I lost about 4-5kg and, like I had hoped, got to a relatively stress-free food plan. I did, towards late summer, start overexercising a little, but I attribute that to the newness of my Apple Watch.

By April, things started to shift a little, as I officially voiced my wish to explore the possibility of my moving to the main institution or another care agency with an institutional setting. The behavior specialist and I created a housing profile with my needs and wants on it and the behavior specialist gave it to the care consultant.

As it turned out, he only got applications sent out to the main institution and to one other agency, an agency in elder care. The reason was the fact that said agency operates an assisted living facility for blind or visually impaired older adults. With the fact that my long-term care funding is blindness-based, it makes some sense, but the place isn’t suitable at all.

I did get to meet the behavior specialist and two support coordinators for the main institution. As it turned out, they did find a place they considered suitable, ie. my current care home. I moved in early October to what from the care agency’s website looked like my dream home. It quickly turned into a nightmare though.

Thankfully, during the timeframe of late November till late December, some things got settled. I’m still finding I feel very easily frustrated with some things in my home and I’m swinging between letting them go (which is very hard for me) and mentioning them (which may come across as me sweating the small stuff).

For one thing, I lost another 6kg during these three months that I’ve now been here. I know I am still overweight by a few kilograms, so in this sense it’s okay, but it does create some difficulties relating to my disordered eating habits. I’d really like to get in touch with the dietitian again.

In other health-related news, I got some med tweaks in 2022. First, I started pregabalin I think in February. Then, in April, I took my first step lowering my antipsychotic dosage.

I also found out during the summer that my kidney function was mildly decreased. I had it retested about two weeks ago and, though it decreased a tiny bit further, this could be because I have a UTI.

Let me also share about my creative endeavors of the year. I did a ton of polymer clay crafting and really loved it. When I moved to my current care home, I for a while had to let go of this hobby, but now I’m trying to slowly reinvent my creative self.

Lastly, faith-wise, I remain a struggling new believer. I am really hoping and praying that God will lead me further on the right path towards Him in 2023.