Poem: Home Is…

Posted on by Astrid

Home was
At my parents’
Who were there and yet weren’t there for me
Hurting me in ways I feel I can’t express
It wasn’t safe
Or maybe that’s just me

Home was
On my own
Barely holding on by a thread
Surviving but that was about as far as it went
It wasn’t doable
Or maybe that’s just me

Home was
In the mental hospital
Where I stayed for nearly a decade
Only to be kicked out again
That wasn’t forever
And that wasn’t me

Home was
With my spouse
Again, barely holding on by a thread
Managing life by sleeping and panicking
It didn’t work out
But maybe that was me again

Home then was
In the care facility in Raalte
About as unsuitable as they come in theory
But it was near-perfect in reality
And yet, I left
And that was me (sort of)

Home then became
My current care home
With harsh staff, chaotic clients and poor quality of care
I wasn’t abused (not really), but that’s about as far as it goes
It doesn’t feel safe
But then I wonder, isn’t that just me?

Maybe soon home will be
The future care home
The big unknown
Will I feel sort of happy there?
No-one can tell
But it’s up to me

To make myself feel at home

This poem may sound a bit self-loathing. It isn’t intended this way, but I couldn’t express as concisely how I feel about my various “homes” and particularly the way people have told me I approach them (ie. the idea that I’m never satisfied anyway because I’m looking for perfection) without sounding this way. This is definitely not my best poem, but oh well, it shows my conflicting feelings about the fact that I’ve never felt “at home” anywhere.

I’m joining dVerse’s OLN. I’m also joining Friday Writings. The optional prompt is “muscle memory”. I guess repeating that I don’t feel at home anywhere counts.

Decisions Made for Me

Posted on by Astrid

Hi all. I’m joining Denyse’s #WWandPics once again. This week, she talks about the letter D words that relate to her, among which “decisions”. I wanted to write about decisions too, but this time, about the reality of decisions being made for you. This may not happen to non-disabled adults much, but it happens to me all the time.

Like with my upcoming move. I know next to nothing about my future care home and, when I told my assigned staff that this frustrates me, she pointed out that I’ll move there anyway so how would giving me more info help?

Honestly, I wish I were given some way to have any level of input into the process. I know the reason the powers-that-be have decided to give me no choice is probably because they feel I’m too critical anyway. They believe I’m looking for the perfect home, which they and I know doesn’t exist given my rather complicated care needs.

They always tell me that I wanted to leave the care facility in Raalte, which was near-perfect compared to my current one. I did, in a way. That is, I wanted to have a discussion with the behavior specialist to explore the possibility of me finding another care home. That’s not the same. And they were the ones not being up front with me about all the things I’d lose if I wanted to live on institution grounds and have fellow clients with whom I could speak. They may’ve technically allowed me to make the decision to move here, but they gave me the bare minimum amount of information to make that decision.

Now they’re not letting me make a decision at all. It makes me feel intensely powerless and that’s a really distressing feeling. And who will be in trouble if my behavior doesn’t improve? Yup, me. Some staff have come to call me spoiled, in fact, so the burden is on me to show them I can handle whatever this new home has to offer. If I can’t, well, too bad, then I either have to learn to live with the decisions made for me or find myself another way to cope.

The Wednesday HodgePodge (August 23, 2023)

Posted on by Astrid

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

1. What’s your earliest memory?
My third birthday. My paternal grandma brought me a doll from Berlin and my father taught my sister and me the German word for “doll” (“Puppe”). My sister and I, of course, laughed really hard about this, as “Puppe” sounds just like the Dutch verb for “poo”. The doll, by the way, is named Roza, because my father also said Rosa (but then again, as a child I had no clue how to spell it) is a German name.

2. What’s something about you today that the old you would find surprising?
The fact that I live in an institution. Until I was about 25, living in an institution was my worst nightmare.

3. Do you like to fish? Are you a fish eater? Favorite fish (to eat)? Favorite way to prepare fish?
I’ve only been fishing once and found it intensely boring. Then again, I can’t see so that takes away what little fun I imagine there is to fishing.

I do like fish, but usually just the once with the not-too-distinct flavor. The only exception is tuna, which I love and would probably be my favorite fish to eat. When my sister turned vegetarian and showed my parents info about the unethical consequences of tuna eating, they for a while refused to buy it. I got really upset.

4. What’s your biggest first world problem?
I’m not sure whether my unsuitable care home counts as a first world problem. I guess it does, since most disabled people in developing countries don’t have a choice where they live at all. Neither do I at this point, in the sense that I know next to nothing about my future care home and am told that since I’m moving anyway it’d be pointless to give me more info. I have a post scheduled for tomorrow on this topic. In any case, I’m still fortunate in many ways I guess.

5. What one word would you use to describe your year thus far?
Chaos.

6. Insert your own random thought here.
I almost broke my record of active calories burned on my Apple Watch today. Honestly, I think relatively speaking I already broke it, since my last record dates from September of last year and I weighed 12kg more than I do now, so burned off more calories with the same physical exertion. I still need 20 exercise minutes to break my exercise record (which I set on the same day), but I won’t do that. Those 15 active calories I still need to burn for my movement record should be doable though. Today, unlike the time I set my old record, I did a variety of workouts: walking, swimming, the stationary bike and dancing.

How Sensory Seeking Manifests in Me

Posted on by Astrid

As those who visit my blog regularly will know, I am autistic. My assigned staff put “highly sensitive” rather than autistic on my basic info sheet. This isn’t necessarily incorrect, but it is definitely incomplete. Not just because autism encompasses more than sensory processing challenges and because the hyped-up term of “highly sensitive” doesn’t come close to describing my level of overload, but also because in certain ways, I am not hypersensitive at all. Today, I want to talk about the ways in which I am, in fact, a sensory seeker.

The main aspect in which I’m a sensory seeker, is reflected in the way I approach food. I love love LOVE spicy food. I also love crunchy food. I can’t stand mash, because that is about the polar opposite of both. Honestly though, I find the texture matters more than the flavor, since mash didn’t get better with lots of black pepper on it and I can handle bland yet crunchy foods.

I also chew on hard candy. Like, I’ve tried sucking on it, but I really can’t manage to do that for more than a few seconds before I need to break the candy. Another example, but I’m not sure whether this is sensory seeking or lack of proprioception and/or coordination, is the fact that my staff tell me my spoon always clanks against my teeth quite loudly. I also realize now that drinking my coffee quite hot is probably a sign of being a sensory seeker.

With the sense of smell, I have a love/hate relationship. I love my essential oil diffuser, but don’t usually wear perfumes and can’t really stand anyone else wearing them.

In the tactile sense, I’m definitely a sensory seeker. This doesn’t mean I like all kinds of touch. I mean, I can’t stand it when people unexpectedly pat me on the back. Truthfully though, it should really go without saying that you should never touch another person without asking them first.

However, I love tight hugs, or used to before I broke my collarbone in 2019, which never properly healed. I also love to be rough when brushing my hair and am probably a bit rough when brushing my teeth too. When I wear my hair in a ponytail, it has to be tight too. And my shoelaces can’t really be tied too tightly. And yes, my spouse took up the challenge, only to tell me that, even though I didn’t think they were too tight, they actually were.

I of course need to mention my weighted blanket here too. It is 12kg, which is between 20 and 25% of my body weight. That’s on the heavy side as far as I’m aware. Of course, I got it when I still weighed nearly 20kg more than I weigh now, but then I’d often end up adding another weighted blanket on top of it.

Another aspect of sensory seeking I need to mention is being in constant motion, even if it’s small movements with my fingers or toes. I am not diagnosed with ADHD, though sometimes I think I could have it. I wasn’t extremely hyper as a child – in fact, my parents would describe me as a quiet child. However, I was definitely jumping onto lots of things. I no longer do this, but mostly because I can’t due to my decreased mobility. Now that I think of it, honestly I’m pretty sure that my need to walk a lot, is also a sign of sensory seeking and/or hyperactivity.

With respect to the sense of sound, I’m not generally a seeker. I do listen to soothing music on my music pillow when trying to get to sleep, but that’s it. I can’t stand background noise. Like, some staff suggest we have music on in the background while we play games, but I really can’t concentrate then.

Lastly, of course, is the sense of sight. I’m blind now, obviously, but when I was younger, I still had some sight. I definitely was a sensory seeker when it came to the visual modality. The most striking example is the fact that I’d often make shadows on my desk with my hands and look at them.

There are many other ways in which I express sensory seeking, but you get the idea. All this being the case, don’t discount my sensory overload just because I can be a seeker in other circumstances.

My Random Musings

Also linking up with Senior Salon Pit Stop.

Life Always Offers Me a Second Chance

Posted on by Astrid

Hi everyone. I haven’t touched the blog in a few days once again. It’s getting old. I often do want to write, but don’t know what about except how shitty things are here at the care home and how I still haven’t got a moving date. Endless venting about the care home isn’t going to please my readers though, so I usually end up trashing those posts. After all, even though I originally intended this blog to be for me to write from the heart, I do care about my readership.

I do still read blogs, albeit not as much as I used to. Today, I came across an inspirational one-liner by Tanya: life always offers you a second chance. It is called tomorrow.

This definitely speaks to me. Of course, it isn’t always true, in that eventually we’ll all die and not have a second chance. However, until that point comes around, we can always create a better rest of our life. It doesn’t even have to be tomorrow, if that just leads to procrastination. It can also be a minute from now.

I employ this logic when it comes to my disordered eating and other unhealthy coping mechanisms. I see each day – or if needed, each moment – as its own opportunity for growth. For this reason, I don’t count the days I’m free from self-harm, in the sense that I’ll have to “start over” when I’ve had a slip up. I don’t do “cheat days” either. Not that I’m on a diet, but even when I did follow a stricter food plan than I currently do, I didn’t consider a day ruined when I had binged. Interestingly, I did at one point struggle with letting go of my 300-odd day streak of reaching my movement goal on my Apple Watch. However, I am happy to report it doesn’t start over when it comes to calculating when I’ve reached 365 days of completing my movement goal (I think it’s going to be this Thursday or Friday).

In a sense, the idea that life will always give me a second chance tomorrow, might be an excuse to laze around. However, that’s not the point. The point of this idea probably is that there’s no use in dwelling on my past mistakes, because as long as I live, there’s time to set them straight.

The Wednesday HodgePodge (August 16, 2023)

Posted on by Astrid

Hi everyone. I haven’t participated in the Wednesday HodgePodge in a while. The reason is a comment Joyce, the organizer, made about Rikkie Kolle, the trans woman who won the Miss Netherlands competition last month. Trans rights are dear to my heart, so I felt the need to educate Joyce (respectfully, of course), even though I will probably not be able to convince her that trans women are women. After this, I didn’t feel I could in my right mind participate in the HodgePodge again, despite the fact that Joyce assured me that people from all walks of life are welcome. Then today I decided to check back and the first HodgePodge’er I stumbled upon happened to be Jewish. That’s a relief. So now I feel that I may be able to join in again, given that it’s indeed not just a place for conservative Christians.

1. What motivates you to work hard?
Nothing, honestly. I am not a hard worker. That being said, if I want to accomplish something, I thrive on setting myself deadlines.

2. It’s been said “Ignorance is bliss”…is it?
It depends. Where it comes to the state of this world, a healthy balance is needed. I mean, complete ignorance will lead people to mistreat the planet and each other even more than we already are, but being completely submerged in negative news, won’t solve anything either.

I think the same goes for our daily life. I mean, I watched a video on signs of dementia a few days ago and was shocked to find out I ticked more boxes than I thought I would. Now the doctor doing the video covered the complete spectrum from entirely healthy (which I know I’m not) to end-stage dementia. I am pretty sure I’m still at a stage where I can reverse any cognitive decline I might be experiencing. In this sense, ignorance could’ve felt like bliss, but it isn’t necessarily so.

3. Would you rather be stuck on a broken elevator or a broken ski lift? Explain. Have you ever actually been stuck on either? Of the common fears listed here what’s your #1: heights-enclosed spaces-snakes-public speaking-the dark-flying.
I’d probably choose an elevator, though neither seems appealing to me. Never experienced either. Out of the common fears, I’ll choose snakes as my number one because I’m very scared of venomous animals. I can handle a non-venomous snake without a problem though, have even had a small one around my neck.

4. What’s something you like about the town or city where you live?
The institution I live in (not my specific home, of course). The rest of the town is boring.

5. Life is too short to ___.
Waste it by endless worrying. Oh now how I wish I could stop doing it.

6. Insert your own random thought here.
I haven’t shared this with the HodgePodge crowd yet, but I am soon moving to another care home. My assigned staff actually mentioned September. I havent’been given an exact date yet and won’t find out till about two weeks in advance. Fingers crossed it won’t be like the end of September, because quite frankly I can’t wait.

Colors, Changes and Connections

Posted on by Astrid

Today, I am joining Denyse’s #WWandPics link-up. Denyse apparently has been sharing posts following an alphabetical theme. Today, she talks about the letter C. I could do this alphabet thing too, but then I’d have to start at A. Instead, I’m taking inspiration from her “C” words to write my post.

Denyse’s first “C” word is “change”. Of course, things are changing in my world too, though I’m not yet sure when. I got informed last Saturday that my new care home will keep my current day schedule for now. That’s in spite of the fact that it apparently indeed does cover two hours more care a day than I get funding for. I still don’t fully understand the technicalities, but I don’t really care, as the number of support hours I get according to my day schedule was never the problem. It was how cut up into at most 60-minute activity blocks it is. It’s okay though. Better than the alternative my staff have been suggesting, saying I need to find a way to cut back on those two hours and go down to 30-minute activity blocks.

I asked my support coordinator about having a care plan review. We haven’t had one in nearly two years due to my moving to my current home right when my last review was due. My support coordinator is going to get the new one to schedule a review once I’m settled there and he will attend too.

He also finally sent my mother-in-law an activation code to access the daily reports on me and my care plan. As far as my mother-in-law is concerned, they mostly report really superficially. For those who are wondering, back several years ago it was agreed upon that I wouldn’t get access because it might cause distress, but I did want someone in my family to have access especially now that I’m struggling significantly. Most daily reports apparently go something along the lines of “mostly had a good day, slightly stressed over ___”. I don’t know whether it’s deliberate, but that’s certainly downplaying my distress.

The support coordinator for the new home did ask my current support coordinator to confirm what color paint I want on my wall, despite the fact that I’m pretty sure I already told him through my mother-in-law. It will be pink, since lilac wasn’t available. Truthfully, all other colors except maybe blue sounded awfully ugly to me. And yes, despite being blind, I do have some concept of color from when I could still see a little.

Through all this change, I am happy about my online connections. I have multiple disabilities, so am in Facebook groups for various conditions. I am also in a few Facebook groups for former preemies or NICU babies in general. The Dutch one is organizing a get-together in September. I sent the organizer an E-mail to sign up, then decided to ask some further questions in the Facebook group. As far as I’m aware, the get-together will be held in a café-style meeting room, so I’ll most likely be able to get the ParaTransit taxi driver to get me right to where I need to be. On the one hand, I’m reminding myself that I used to attend the DID charity meetups independently each month from 2011 till 2013 and even rode the train there by myself. On the other hand, it’s 2023, not 2013 and I’ve probably declined cognitively at least a little. Then again, if I don’t try, I’ll never know if I can do this. I would really love to connect to other NICU survivors, as honestly I’m beginning to realize I might not be alone in experiencing significant attachment issues and they might in fact have started this early on.

Choice of Residence

Posted on by Astrid

Hi everyone. Today’s topic for Sunday Poser is how or why you chose your city, county or area of residence, or whether it was a choice at all.

I stumbled across my current care agency by chance in 2017 when trying to find day activities for once I’d be discharged from the psych hospital. After going to two different day centers with this agency and coming to the conclusion that living semi-independently with my spouse was not a viable option in the long run, I moved into the home that had a place available at the time. That’s the short version of how I ended up in Raalte.

Since knowing about this agency, I always envisioned myself living on its institution grounds. I thought I’d feel more sheltered there. This was one of many reasons I requested to look into the possibility of finding me another care home in April of 2022.

Wilp, the institution town (I’m pretty sure I mentioned it before so I might as well tell you rather than remaining vague) is right in the middle of the tricities Apeldoorn/Zutphen/Deventer. I think the town itself has a little too little to offer for my liking, since it only has a bakery and a coffee corner and that’s basically it. However, all three cities are within easy driving distance and Twello, the neighboring town, is within cycling distance. It’s too bad our home doesn’t have a side-by-side bike.

Since I grew up in Apeldoorn, I am sort of familiar with this area. Not in the sense of knowing my way around – I’d never even heard of Wilp before finding out about this care agency -, but in the sense of knowing the culture. It’s not necessarily my type of culture – a bit too conservative for my liking -, but I am okay with it.

The institution I live in is great. No, not the home, of course, but I love the petting zoo, on-site swimming pool, various day centers, etc. The fact that residents and staff all greet each other, is also awesome. It’s really like a small village in itself. And indeed, it’s more sheltered than community living in Raalte was. One drawback I need to mention though is getting mail delivered. Particularly packages cant be sent here. Ah well, I’ll get them sent to my in-laws and get my spouse to collect them and bring them here on Sundays.

Can’t Wait to Leave

Posted on by Astrid

Today’s prompt for Five Minute Friday is “leave”. I am pretty sure this or a similar prompt came up before when I was in the process of finding what turned out to be my current care home. Maybe not on Five Minute Friday but on Stream of Consciousness Saturday or the like. Well, now that it came up on FMF, even though I’m not an actual Christian like most of the participants, I thought I’d join in. So, here goes.

I can’t wait to leave this nightmare of a care home. Today, a fellow client was being severely out of control right in front of my room and my would-be one-on-one had to leave me to attend to him because her colleague was alone attending to “the group” (ie. everyone except another one-on-one client). I felt it was unfair, because that other client’s one-on-one is non-negotiable, while my staff keep claiming I need to cut back on my hours. Well, I could not do any activity at all with how long it took the staff to attend to this other client and then bluntly tell me, once melting down, to calm down, etc.

I can’t wait to leave this nightmare of unclear and mostly very harsh treatment that I receive here. I mean, I’m not aggressive, but I get treated like I am.

I am hoping to find out when I’ll be moving to my new care home real soon.

I sometimes feel left alone on this journey. I try to turn to God, even though I no longer subscribe to traditional Christian beliefs. I really do hope that, even if (which I’m pretty sure is a “when”) I’m left all alone in this world, there’s someone out there who cares.

Hello Monday (August 7, 2023)

Posted on by Astrid

Hi everyone on this first Monday of August. How are you all? Let me share about my weekend. I’m also sneaking in a bit about today, because I don’t think I can devote a separate blog post to the topic and it needs talking about anyway. I am joining in with Hello Monday.

Saturday started out pretty good. My assigned staff came to do my one-on-one for the morning. My schedule did get somewhat distorted because she came up with the idea of us clearing out my wardrobe. I didn’t mind at first, but I didn’t realize until it was too late how overloading this was.

Then eventually, after having had a shower, getting dressed and having had breakfast, I realized I’d forgotten the steroid cream I’d been prescribed for my eczema. I asked my assigned staff to help me apply it. “I’ll show you how, then you can do it yourself,” she said. Fair enough, you might say, but by this time I was well and truly overloaded. I sighed, to which my assigned staff made a comment about me being a “big girl” and that I could stomp my feet all I wanted (I didn’t). Once she got down to showing me how to apply the cream, she kind of curtly told me to relax my hand (which, well, having mild cerebral palsy, I simply can’t), then asked why I can’t. I got quite thick layers of cream on some parts of my skin and nothing on others, but in the end it didn’t matter, as the cream she’d grabbed was the oily lanette cream rather than the steroid. I do understand my staff meant well, in the sense that she’s trying to encourage independence. However, I often don’t realize how overwhelmed I am until it’s too late and at that point, any further demands will lead to me shutting or melting down.

Saturday evening was pretty good. We had home-cooked macaroni for dinner, which I loved! I actually was allowed a second helping.

On Sunday morning, my one-on-one arrived 25 minutes late, claiming it was only 15 minutes and that it just was what it was and deal with it. Then at lunchtime, she wouldn’t leave my room after I’d finished my drink (I wasn’t eating because I’d be having lunch out with my spouse), claiming she was making up for the time she’d been late in the morning. Well, it isn’t just sitting in my room that helps me. If she could’ve taken that time to help me with an activity that needed doing rather than just “chilling”, that would’ve been appreciated, but she couldn’t.

Thankfully, my spouse arrived around 1PM. We drove to Apeldoorn once again and, after a stroll around the city, decided to have lunch at Backwerk once again. I had the same old chicken barbecue baguette. Hema was closed, so we just had a drive around, then stopped by Aldi in the town next to where my institution is (I’m pretty sure those who live in the Netherlands know which town I’m referring to, if I haven’t shared it already). I wanted to get some nuts and Tuc (a kind of salty biscuit), which my dietitian allows me to snack on later in the evening. My spouse also got apricots, so I also bought those. And of course the perpetual Kinder Bueno. Then my spouse drove me back to the institution.

Once there, it turned out one of the staff had car trouble, so didn’t arrive till 4:30PM. Of course, it was my one-on-one that got cut. One of the other staff made it sound as though they were buying us French fries and a snack to make up for it, which I considered rather lame. Then after we’d finished our fries at 4:50, the staff informed me bluntly that my day schedule would be followed from there on, so I would have one-on-one again at 6PM. I felt this was ridiculous, but had no choice, as the staff were using stupid emotional reasoning to get me to agree with them.

In the evening, I did show my one-on-one how to make beads out of polymer clay.

Now on to my cheating by sharing a bit about today: this morning, my support coordinator informed me that he was going to attend the team meeting for my new care home to answer some questions about me, but that he thought I could answer those questions perfectly well myself. I agreed and went with him. Some of the questions made me feel a little uncomfortable.

The first question I got, in fact, referred to my drinking excessive water. That happened exactly once and was an impulsive act. I decided to broaden the topic and explain about my preference for how staff deal with my impulsive or self-harm tendencies, ie. by not giving more attention than needed to the behavior but to stay supportive of my emotional needs. I did forget to mention that wounds do need to be checked, something that doesn’t always happen here.

Overall, I mostly felt validated, in the sense that at least the team didn’t respond negatively to my comments. I did find it hard to walk the fine line between being too bluntly honest about my needs and delivering a sales pitch of myself. I hope I did okay though.