Trying to Live a Balanced Life

Posted on by Astrid

This week’s topic for Tranquil Thursday is balance. Maggie’s first question is about work/life balance. Since I don’t work and never have, I can’t speak to that. However, it made me think of the ways in which I need to create a balanced life in general.

I don’t currently have formal day activities. Of course, I have four hour-long activity slots a day, but I can spend them pretty much however I please and sometimes (most times, actually) I feel so uncomfortable with the staff assigned to me that we can’t do more than play a simple card game. I do feel I need to find a balance in my life between being active and passive.

Active, in this sense, does not necessarily mean exercising, although that too needs to happen. I probably don’t need to worry about being extremely sedentary. I fell pretty badly yesterday and still I managed to meet my movement goal on my Apple Watch today. Okay, my goal is just set to 300 active calories, but that’s so that it’s within easy reach even on bad days like today.

What I do mean by being more active is engaging more in stimulating activities such as crafting, food prep such as smoothie making, etc. I also intend to be more active where it comes to actually learning about these topics. I mean, I love copying recipes and experimenting just a tiny bit, but it’d be great if I knew about the science behind them. For this reason, I just downloaded a book off Bookshare on the fragrance aspects of essential oils. How great would it be if I could create my own blends rather than relying on some shady subscription website.

This doesn’t mean I need to be active mentally or physically all day. It’s about balance, after all. I also need to rest. But currently, I feel my life is a bit too much “on hold” for my liking.

Another way in which I need to find balance, which Maggie didn’t ask about, is health. Last week, I agreed with the dietitian on a weight range I need to stay in to maintain a healthy (or near-healthy) BMI and not go overboard with my weight loss. As long as I stay within this range, I am in control of my eating habits. I do need to make sure I don’t slip back into my bulimic tendencies though. I will see the dietitian again in mid-June and will ask her to continue check-ins with me, although they don’t need to be monthly anymore I think. Over the past few weeks, I gained a little weight, but I’m still within the agreed upon range, though I do notice I’m having “cheat” foods more regularly than I’m probably supposed to.

Another question Maggie asked is about your life pie. This is a drawing of a pie divided into six slices for each area of life. You then put dots in each slice to see how well you do in each area and connect them to see which area is relatively unfulfilled. This is a visual exercise, of course, which I can’t do, but it did make me think. My life is most fulfilled in the area of exercise and least, unless you count work (but that’s by societal standards only), in the areas of friends and play. That last one might surprise my staff, as I play card games on a daily basis. However, what I mean by this is truly being creative.

Work: Employment and Day Activities for People With Intellectual Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter W post in the #AtoZChallenge. Today, I want to discuss work and day activities for people with intellectual or developmental disabilities.

People with a mild intellectual disability and no additional problems can often work paid jobs that would otherwise be performed by typically-developing adolescents, such as filling shelves in a supermarket or being waiters in a restaurant. They may not be able to complete all duties required for these jobs, but in the Dutch system, if you can do a task that is part of a job and have minimal employee skills (such as coming on time, respecting authority, etc.), you are expected to join the mainstream workforce. I, thankfully, have not been judged to meet these criteria, but then again I’m lucky in that I’ve been on disability benefits since 2004. A few years back, I heard of a profoundly and multiply disabled woman at my day center who somehow was judged to meet the criteria. The work specialist had probably never seen her, as they said she could do simple manual labor, while she had severe spastic quadriplegia.

Alternatively, there are sheltered workshops for people who can work, but need to do things at a slower pace and need some more support than can be reasonably expected within the mainstream workforce. However, these workshops have been facing significant budget cuts.

When this, too, isn’t an option, you enter the world of day activities. Those still can be “work-like”. In fact, most day activities for more cognitively capable intellectually disabled people simulate a work environment. Some of these activities are truly meaningless, in that the staff will let clients fill the same boxes with a number of items repeatedly only to empty them again so that the client can fill them once more. I honestly have very strong opinions on this: if it’s truly what a person wants and there’s no way of making the activity actually meaningful, I’m fine with it. Otherwise, I don’t see why day activities need to be “work” and things like crafting or music can’t be day activities for more cognitively capable individuals.

For more severely disabled individuals, day activities are usually sensorially-based. This includes snoezelen®, which is being in a room where the sensory environment can be completely controlled to suit the individual’s needs. I actually love this, although only for about 30 minutes at a time.

Other activities include cooking and baking, with which the clients usually don’t really help (although some moderately disabled people can) but will experience the sensory stimuli associated with the process. For example, I used to attend a group for profoundly disabled individuals and, when we’d bake something with apples in it, the staff would massage the clients’ arms with an apple. Music, story time, and simple crafts are also common activities for this population.

I, personally, if I had to choose a day activities setting, would choose the one for more severely disabled people. I know I can’t really function in a group setting, which is why I’m stuck at the care home for now, but I honestly have zero interest in meaningless labor.

#WeekendCoffeeShare (February 25, 2023)

Posted on by Astrid

Hi everyone on this last Saturday of February. Can you believe we’ll be rolling into March this coming Wednesday already? I definitely can’t!

I’m joining #WeekendCoffeeShare today. I just had dinner, but probably won’t finish writing this post until after my evening coffee at 7PM, since it’s 5:45 and I have one-on-one for an hour in about fifteen minutes. I’m reminded, as I type this, that the other clients’ evening coffee got moved to 7:30, so I’m afraid you’ll have to be content with a Senseo coffee (and so do I). Let’s have a drink and let’s catch up.

If we were having coffee, I’d start out by asking about your weather, as usual. Ours has been mostly cloudy with some drizzling, but today it’s been sunny at least during the afternoon. Daytime temperatures rose to between 7°C (today, the coldest day of the week) and 11°C earlier in the week.

If we were having coffee, I would tell you that I didn’t do as well with my walking as I’d done last week, but on Tuesday, I did register 124 exercise minutes in a single day, all by walking. It wasn’t a record by any means, but it was the best I’ve done since moving to my current home.

I’m also trying to up my walking speed, because as of this week, I can see my trends on my Apple Watch and this is the downward trend that my Apple Watch claims is the easiest for me to turn around quickly.

If we were having coffee, I’d tell you that I’ve had a pretty good week in the care home overall. So much so, in fact, that, like I said yesterday, I’m not 100% decided I want to leave this home anymore. A lot depends on the outcome of the meeting with the behavior specialist, my support coordinator, assigned staff and mother-in-law next Thursday. In particular, I’m going to inquire about their ideas for me regarding day activities. Ideally, I could work towards going to a day center with part-time one-on-one support. After all, I’d really like to focus on having some actual day structure rather than having “time to rest” (some staff seriously use that term for my unsupported times) every hour at least.

If we were having coffee, I’d share that I asked my assigned support staff to contact the doctor about the burning sensation on my back that I’d mentioned on Wednesday. The way things work here, she had to contact the institution nurse first. The nurse recommended we try some cetomacrogol cream. I think it might indeed be my eczema acting up again. To be honest, the cream isn’t really helping yet though.

If we were having coffee, lastly I would share that my laptop started acting up a little last week, so I ordered a new one. My old one, which I’m still typing this post on, is over 3 1/2 years old and has been used a lot during those years, so really it’s not at fault. The new one has Windows 11 on it, which I’ve been avoiding installing on the old one (assuming it could be installed at all). I really need to look into the differences so that I can familiarize myself with the new operating system before this laptop completely dies. Going to do that now, okay?

How have you been?

TGIF: Optimal Care?

Posted on by Astrid

It’s Friday and this means Paula Light is rambling on in her TGIF post. I don’t join in each week, but today, I’d like to.

Today, I received optimal care as per my current care home’s standards. That is, my day schedule wasn’t disrupted and I had one staff member for the entire shift both morning and evening. My assigned staff says this means I’m lucky. I considered myself lucky this morning indeed, since one of the regular staff was my one-on-one staff while two temp workers were supporting the other clients. My staff for the day explained that one of the temp workers knew the other clients pretty well and he’d never worked with me, so it was decided that he’d do his shift supporting them. This, indeed, does make me feel fortunate.

However, with respect to the day schedule, I still feel that it could be better. And I don’t mean with me receiving quantitively more support. I mean that I’d like longer support times and fewer but longer times without support. I also probably want to work towards going to a day center.

I’m probably going to insist I’ll attend the meeting with the behavior specialist, support coordinator, my assigned staff and my mother-in-law next week. In my opinion, given how it’s been going over the past couple of weeks – better than before -, I’m not dead set on leaving this home as of yet. However, I do need to make sure that there’s going to be at least some room for improvement on the part of my care home. Judging from my staff’s comments, I’m pretty sure there isn’t and in fact they want me to adjust to less and less suitable for me care.

It’s All a Blur

Posted on by Astrid

It’s all a blur, this life of mine. Moments, days, weeks, months – maybe soon years, who knows? – roll into each other. I don’t like it one bit, sorry not sorry.

I may not be able to fully lay the blame on my current care home with its chaotic and yet oh so boring routine and no day activities whatsoever. I might be able to create my own routine that would somehow differentiate between mornings and evenings, weekdays and weekends, summer and winter. If only I knew how.

This post was written for this week’s Six Sentence Stories link-up, for which the prompt word is “blur”.

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.

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.

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.