Currently (May 2023)

Posted on by Astrid

Hi everyone. I remember joining in with Currently every once in a while way back many years ago, but then the person who used to host the meme discontinued it and I never found it again. Now, I’ve rediscovered it. The Currently linky is a meme in which we share what we’re currently up to based on five monthly verb prompts. Here goes.

Loving:
First up is smoothie making. I am loving experimenting with ingredients, such as instant coffee and cocoa powder. One smoothie, in which I added just a little (or a lot!) too much instant coffee, turned out rather bad. One of my fellow residents still claimed she loved it though. We’re not officially allowed to give each other things, but since I just can’t make just one smoothie serving and she’s the one who enjoys my smoothies most, I make sure to consider her first when I have some left over.

Next are my tactile dice. I had and probably still have them at my and my husband’s house in Lobith but they’re probably down in some junk closet, so I decided to order new ones. I have been loving playing the game of yahtzee with the same fellow resident.

Picturing:
I will be going clothes shopping with my staff tomorrow and am kind of imagining how that will be going, both positively and negatively.

Craving:
I just had lunch when I started writing this post, so nothing at that moment. Now that I’m finishing up this post at 3PM, I’m craving white chocolate. I just hit my lowest weight since my wedding (in 2011) this morning and am really pleased with it though.

Wishing:
To find a more suitable care home. It’s been really hectic here at my current care home and I’m pretty sure the powers-that-be are testing my limits. For those visiting from the linky: I reside at a care home for people with mild intellectual disability and significant challenging behavior. I am supposed to get one-on-one support for most of the day, but this often doesn’t happen because others need or are supposed to need more care. I finally got the okay to be looking for another care home last March, but of course this can be a long process.

Collecting:
Smoothie recipes, of course. I downloaded several smoothie recipe collection books off Bookshare, the accessible book service for the blind or dyslexic. I don’t have all the ingredients for any one smoothie, unfortunately, but like I said, I’m trying to experiment.

Unique: A Rant on the Demise of Individualized Care #AtoZChallenge

Posted on by Astrid

Hi everyone. Today for my letter U post in the #AtoZChallenge, I want to rant really. I am not feeling well and really feel like, as an individual with developmental disabilities, my unique needs are missed in favor of what “everyone” or “the group” needs.

Back in like 2009, on my first WordPress blog, I already wrote a blog post criticizing care profiles for their doing away with individualized care. After all, care was now grouped into “care heaviness packages” (the old word for care profiles) based solely on one’s primary disability and one’s score on a rating scale, rather than there being different care classifications for each different sort of care (eg. support, personal care, housekeeping, etc.).

This is not what I want to talk about in this post though. Rather, I want to talk about the individual’s care needs being shoved under the carpet because they do not align with what that particular home is used to providing in general. And, in the case of my current home, it isn’t like there aren’t exceptions.

I cannot go into detail without breaching confidentiality – although really the staff shouldn’t have told me confidential information about other clients, truthfully. However, my home consists of “the group”, which are six clients or six clients plus me, and then there’s either me or I’m part of “the group” depending on whom you ask and when, and then there’s a client who gets full-time one-on-one. The one-on-one client is exempt from almost everything “everyone” needs to deal with, such as temp workers, regular switches in staff, of course alone time, etc. I don’t know all the reasons behind this and even if I did, I wouldn’t be allowed to disclose them here, but I frequently find myself being jealous of this client because her needs seem to take precedence over everyone else’s.

Then when competing for having our needs met, it’s me against “the group”. The home employs an extra full-time staff member to do my one-on-one even though I don’t qualify for full-time one-on-one, so I figured this should be a no-brainer: we all get our needs met, since I’d get my one-on-one and then there’s still even some hours when there’s an extra staff for “the group”. “The group” should be in luck! Well, no such thing: I am in luck if I get my one-on-one according to my day schedule and even then staff complain that I ask for too much if I ever so much as dare leave my room once during my time without support.

As for the temp workers, well, my needs get met last, because “the group” needs at least one regular staff and even if there are three regular staff members on shift, usually the fourth will be sent to support me so that the second won’t have to explain too much to number three.

In another situation, too, my individual needs get shoved under the carpet in favor of what “everyone” needs, ie. when I’m treated harshly for having a meltdown. I often hear staff say that they’d treat my fellow clients the exact same they treat me. Well, it may be so, but I’m not my fellow clients. I am me and I have my own unique needs.

People First?: Issues Surrounding the Language of Disability #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter P post in the #AtoZChallenge. I wasn’t really sure what to write for today’s letter and was still feeling a bit unmotivated, until I decided on a topic and now I’m excited to share. Today, I am going to talk about the language surrounding disabilities, particularly of course intellectual and developmental disabilities. I kind of provocatively titled my post “People First?”, because that, without the question mark, is often used as an argument for so-called destigmatizing language.

Which language, to be honest, isn’t destigmatizing at all. I mean, of course it is good that the term “mental retardation” got removed from the DSM (in 2013!). However, when you refer to someone as an “IB’er” (shorthand for “intensive support user” in Dutch), with “intensive support user” being code for a person with significant challenging behavior, it isn’t destigmatizing at all. And no, in my opinion, changing things around to person-first language (“person with intensive support needs”), doesn’t necessarily remove the stigma unless it is accompanied by an added awareness that someone is more than their support needs. As a side note, the only time I’ve heard the term “IB’er” used in reference to me, was by my staff saying I am not one, by which they mean I don’t need the harsh approach my fellow clients apparently need. I mean, it can’t really mean I don’t have challenging behavior, right?

With respect to people with intellectual disabilities in general, person-first language is commonly preferred by professionals. Whether this is less stigmatizing, I doubt. To be honest though, the abbreviations used in job descriptions and care profiles, usually don’t employ person-first language at all. For example, a treatment facility for people with mild intellectual disability and significant challenging behavior is referred to as a “severely behaviorally disturbed, mildly intellectually disabled” (“SGLVG” in Dutch) facility.

Whether people with intellectual disabilities / intellectually disabled people themselves prefer person-first or identity-first language, I do not know. Most autistic people prefer identity-first language, reasoning autism is an integral part of who they are. I, personally, don’t really have a preference. What matters to me is not the language you use to describe me, but the way you treat me. In this respect, whether you refer to my current care home’s population as having intensive support needs or displaying challenging behavior or as behaviorally disturbed, I do not care. The euphemistic approach here (“intensive support needs”), after all, does not do anything to change the staff’s attitudes towards us.

The Wednesday HodgePodge (April 12, 2023)

Posted on by Astrid

Hi everyone. I’m joining the Wednesday HodgePodge yet again. Here are Joyce’s questions and my answers.

1. April 13th is National Scrabble Day…are you a fan? Do you enjoy word games in general? What’s an eight letter word that tells us something about your life currently?
I don’t like Scrabble, because eventually the board becomes too crowded for me to understand. I do love other word games. There was a game I used to enjoy on the iPhone called 7 Little Words. That is, until they introduced a special “screen reader mode” that was just slightly less inaccessible than the rest of the game had become from then on.

An eight-letter word that says something about my life… clueless. I’ll leave it at that.

2. Do you have a junk drawer? Is it full? Do you know what’s in it? What’s in it?
Not really. Oh wait, the upper drawer in my desk probably counts, as it does have lots of miscellaneous stuff in it, particularly parts that belong to my various gadgets, such as my original Apple Watch wristband (well, only the lengthening half of it, as I recently discovered). I do know of most things in it, but not everything.

3. When does time pass quickly for you? When does it pass slowly?
It passes quickly when I’m engrossed in writing a blog post or in a good book or especially when crafting. Slowly when I am waiting on something.

4. These eight vegetables are in season during spring-asparagus, broccoli, cabbage, carrots, celery, collard greens, garlic, herbs. What’s your favorite? Any on the list you refuse to eat? Last one on the list you ate?
Wasn’t this a question last year too? Anyway, my favorite is broccoli. There aren’t any on the list I refuse to eat altogether, but I really don’t like celery. The last one of these I ate was a carrot this afternoon with my lunch.

5. What’s the oldest thing you own? Tell us about it.
I don’t think I own anything old, so I’ll have to guess either my stuffed whale which I’ve had since I was a baby or my desk. Though I’ve owned my desk for only like 17 years, it’s secondhand.

6. Insert your own random thought here.
Thank goodness for a bit of sunshine inbetween the rain today. I went for a walk this afternoon and then stopped by the day center cafeteria to have a hot cocoa and a muesli bar, the latter of which my staff treated me to out of the vending machine. Yum!

Hello Monday (April 3, 2023)

Posted on by Astrid

Hello everyone. I’m joining Hello Monday again this evening. Let me share about my weekend.

On Saturday, my assigned staff supported me for part of the morning. We made a melt and pour soap in the shape of a heart. Sadly, I don’t have a picture and I gave it to my husband. I added gold-colored mica powder to the soap and lavender and ylang ylang essential oils.

I also created an essential oil blend for in my diffuser. I used pink grapefruit, bergamot and ylang ylang essential oils in this blend.

I did ask my assigned staff to inquire about my orthopedic shoes. This has been an issue for at least two years: I started out with supportive insoles, then an ankle foot orthosis either with or without semi-orthopedic shoes and finally now orthopedic shoes, but they still don’t fit. The shoemaker is frustrated, wondering when they’ll finally be good enough. Well, when they fit. Honestly, I am skeptical about the method they used to create an image of my feet: not using putty for a “mold” but using an iPad to create digital images, a method they’d used on a client of my care agency for the first time. My guess is this method requires some level of understanding I don’t possess but am assumed to possess based on my expressive language. Anyway, I don’t care how much of a bother I am, but I’m not accepting the reality as it is now, ie. my needing to buy new regular shoes every two months due to them being damaged from the way I walk. If they can’t fit me for orthopedic shoes, they’ve got to find a way to fix my shoe issue some other way.

Saturday was a good day overall. I was supported by two staff – my assigned staff and another – I get along with very well during the morning shift and my day schedule wasn’t disrupted. For the evening shift, three out of four staff were staff I don’t really get along with and I ended up being supported by two of them. I didn’t mind though, as my day schedule wasn’t disrupted and I did get to do some activities I enjoy.

On Sunday, my husband came by for a visit and we drove to Apeldoorn to have lunch at Backwerk once again. I had a tuna baguette. Then we went into several shops, because I wanted to buy some new spring/summer clothes. Sorry, no pictures once again. I bought a blue, flowery skirt and three simple tops in black, white and blue.

Sunday evening was a bit hard. It started out well with the staff explaining to me who would be supporting me throughout the shift. This was repeated several times. Then, at 6PM, unexpectedly a staff who wasn’t supposed to come and whom I don’t get along with, showed up. I had a meltdown and eventually, after a bit of an explanation from the other staff and trying an activity for a few minutes, I chose alone time over time with him.

I also spent my weekend working on the #AtoZChallenge, of course. I don’t generally prepare my posts in advance, so I have lots of work to do on the day itself. I also discovered Reddit last week. That is, I had an account back in like 2008, but they changed things up a lot so that’s no longer valid. I love browsing Reddit now and commenting where I can. I haven’t created a post yet.

Overall, my weekend was mostly good with some negativity due to the unexpected staff change. For those not aware, I am autistic, so it isn’t just that I don’t get along with some staff, but if they’d told me in advance, I could have been prepared.

March 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the last day of the month and this means I’m reflecting back on this month’s happenings. I’m joining What’s Been On Your Calendar? (#WBOYC). Here goes.

This month would have started with my having the meeting on my care on March 2, but it got postponed yet again for the third time. I did get a visit from my mother-in-law instead and we took a walk through a nice park. Here are a couple of pictures my mother-in-law took with her phone of a remembrance stone we saw there.



The next Sunday, my husband and I drove to Ikea in Zwolle, where I bought a stuffed orang-utan. I so far didn’t show it on the blog yet, so what better day to do this than today?

On the other Sundays, my husband and I drove to Apeldoorn to have lunch at Backwerk. We did try visiting another lunch cafe once at the recommendation of one of my staff, but literally all tables were dirty.

On March 17, I finally had the meeting on my care. The positive aspect was that the powers-that-be will be looking for another, hopefully more suitable care home for me. The negative aspect is the fact that, in the meantime, nothing will change. This had me spiral out of control quite a bit, which my staff feel frustrated with.

Last week, it led to a bit of a disagreement between me and my assigned staff, because she got frustrated with my negativity. The way she worded it, even if my day schedule doesn’t get disrupted and I’m supported by regular staff for the entire shift, I still find a reason to complain. I countered that this hadn’t happened in months. Even this morning, with three out of four staff being regular employees, the fourth staff supported me for most of the shift.

In the health department, I did pretty well. I finally saw the dietitian last week and we concluded I no longer need to lose weight. Not that weight loss ever was a priority for me, more like a welcome side effect of my healthier-for-me lifestyle. The fact that I’d lost weight rather rapidly over the past five months, meant I had to up my calorie intake to prevent further weight loss. I did gain a bit of weight in the first week on my new food plan, but then again I did eat fries once in that week and a large burger another day. I’m not stressing about the weight gain at all.

In other health news, my cardio fitness level according to my Apple Watch has declined slightly and is in the “low” range again, though just barely. My heart rate recovery, on the other hand, is steadily improving.

All this being said, I’m trying to embrace my body as it is and appreciate my health for what it is.

In the blogging department, I did quite poorly, having written only eleven posts including this one. I am not sure how I’m going to do with the April A to Z Challenge given this reality, but I trust I can do it.

#WeekendCoffeeShare (March 25, 2023)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. It’s past 9PM on the night before daylight saving time sets in, so no coffee for me. I just had an apple-and-cherry flavored Dubbelfrisss with my meds and a small bag of chips. I normally have those at 8PM on Saturdays, but was upset then. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d complain about the weather. Oh wait, how’s yours? Ours has been rainy and chilly for spring. I want sunshine!

If we were having coffee, I’d share that I’ve been struggling a lot over the past week. I was in a crisis on several occasions. I will spare you all the details but I’m not proud of my behavior. The triggers to my severe outbursts involved disruptions to my day schedule and unfamiliar temp workers being placed with me for my one-on-one support. However, I must admit I’ve been on edge almost all the time even when there were few disruptions to my day schedule. For example, today I got upset because my laundry was put through the washing and drying process twice and this means I haven’t been able to change into my pajamas yet, something I normally do around evening med time at 8PM. In this sense, I understand my assigned staff’s saying yesterday that even if there are no disruptions to my day schedule and I’m supported by super familiar staff all day, I still may get upset. Which, by the way, wasn’t the case today, but we got as close as possible: a familiar staff supported me for half the morning shift and from handover at 3:15PM up till dinnertime at 5PM. For which, by the way, I explicitly thanked said staff. I’m pretty sure I’ll hear that because I got upset at 8PM for a minor reason, by which time a relatively new staff was supporting me, apparently familiarity of staff isn’t the issue. And indeed, there is probably nothing that will prevent me from getting upset altogether, but that doesn’t mean that nothing can be done to prevent the most severe of crises.

If we were having coffee, I would tell you that I finally saw the dietitian on Wednesday. She’s the same dietitian I saw in my old care home. I had a good talk with her and the absolute best news is I no longer need to lose weight! Not that this ever was the goal to begin with, but I was obese when I started my healthier lifestyle journey with her in January of 2022. Now I’m at a healthy BMI. The dietitian made some recommendations for me to change my diet to get me from losing weight to weight maintenance. She’s also trying to talk my staff into getting me to choose my dinners from the meal service menu again, but I haven’t heard about that so either my assigned staff said no or that’s still up for debate. The reason the dietitian is trying to get me to choose from the menu is the fact that I’m quite a picky eater and, when I don’t like something, I’ll usually skip it and not be sure how to replace it. My eating disorder voice also often chimes in, saying that the fewer calories I eat at dinner the better.

If we were having coffee, lastly I’d tell you I upped my movement goal on my Apple Watch from 300 to 330 calories per day. It’s a bit of a challenge to reach it, particularly now that the weather hasn’t permitted long walks most days. I did go on the stationary bike once (and planned on going onto it several more times but you know how it works with motivation to exercise). I did surpass my goal each day though.

The Wednesday HodgePodge (March 22, 2023)

Posted on by Astrid

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

1. Did you celebrate St. Patrick’s Day in some way? If so tell us how. Are you a fan of corned beef? Cabbage? The color green?
No, I didn’t celebrate St. Patrick’s Day. I am not a big fan of cabbage or corned beef, but it’s not like I hate them either. I do love the color green.

2. March 22nd is National Goof Off Day…will you celebrate? Your favorite way to goof off? Last time you had a whole day to spend “goofing off”?
I don’t work and can officially choose my own activities within my day schedule, although a lot of staff will suggest them for me. In this sense, I can “goof off” as much as I like, although it doesn’t often feel like it. My favorite ways to “goof off” would be reading, watching YouTube videos and chilling out with an essential oil diffuser on. By the way, crafting is also a favorite way to spend my time, but since I need support with that, I often don’t feel as playful about it as the expression “goofing off” reminds me of.

3. Something on your to-do list that has been there more than a month? Will this be the month you finally cross it off?
I don’t have a to-do list, honestly.

4. In your opinion, what emotion is the most beneficial? Which one is the least useful?
The most beneficial emotion, to me, is joy. Okay, yes, I copied that from Joyce but I completely agree. I had it as my word of the year last year. The least useful emotion, to me, is bitterness.

5. What was your favorite thing to do as a kid? Elaborate.
Many different things. I enjoyed playing with PlayMobil® until I was at least thirteen. I also loved sitting on the swings in my garden. However, I was also quite nerdy, enjoying geography and drawing maps by hand (obviously not detailed at all due to my severe visual impairment and my poor spatial awareness). My favorite map to draw was that of Italy.

6. Insert your own random thought here.
Just a thought: for those of you who don’t need care, can you imagine what it’d feel like if, each day, five or so different support people, often random strangers, showed up in your home claiming to want to do an activity with you? How about if they felt entitled to ask you personal questions to “get to know you” without disclosing much about themselves (after all, they’re “professionals”). What if, after six months, you’d seen literally over a hundred of them, if not several hundreds? How would it make you feel? I just asked a staff, who is a temp worker here but has supported me about ten times now so I’m supposed to “know” him, this question, after I got very irritated with another temp worker (who’s supported me about five times). The more familiar temp worker seriously replied that he wouldn’t mind who got into his home as long as they’d do the activity with him. I guess this means needing care is too far out of his realm of experience to understand the question.

#WeekendCoffeeShare (March 18, 2023)

Posted on by Astrid

Hi everyone. Today I’m joining #WeekendCoffeeShare. It’s nearly 9:30PM as I start writing this post, so I’ve long had my last coffee for the day. I’m afraid I only have water now. However, as this is a virtual coffee share, you can all grab your own beverages of choice. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d ask about your weather, like I normally do. Ours has been mixed, but usually pretty good. Yesterday and today, the temperature even climbed to 16°C.

If we were having coffee, I would say that yet again I haven’t been as physically active as I’d have liked this past week. However, either my sister doesn’t usually wear her Apple Watch or she isn’t as active either, as we’re “friends” on the Fitness app now and I’m more active than she is according to it.

Yesterday, the support coordinator did take me and two other clients on an hour-long walk, partly through uneven terrain. It was good.

If we were having coffee, I’d tell you I’m still struggling quite a bit. Like I wrote yesterday, we finally had the meeting on my care. It was mostly validating, but the bottom line is nothing will change in the short term.

If we were having coffee, I’d tell you that, because of this distressing situation, I’ve been in crisis quite a few times lately. I self-harmed a few times and today, I actually eloped from the care home and wandered around institution grounds for over an hour before the staff found me. I know this isn’t going to help my chances of going to a less behavior-oriented home, but I really can’t keep myself from spiraling out of control like this.

If we were having coffee, I’d share that I bought another pair of headphones for like €330 and it turned out I don’t like them. I’d been wanting to buy them forever, but they don’t fit comfortably (are too large) and the noise canceling function isn’t as great as the reviewers say it is. It’s going to be returned.

If we were having coffee, I’d end on a positive note by saying today the support coordinator took me for a walk to the coffee bar (I know you English-speaking folks call it a “coffee shop” but I just can’t bring myself to use that phrase) here in town this afternoon. I had a black coffee and a piece of honey-walnut cake. It was delicious!

Finally, the Meeting on My Care

Posted on by Astrid

Hi everyone. How is your Friday going? Mine’s okay. Guess what? The meeting between me, my assigned staff, my mother-in-law and the behavior specialist finally happened today. Let me share.

The behavior specialist opened the meeting by saying we needed to discuss how I’m doing now and how things have gone since our agreements at the last meeting. To both, I could give relatively short answers: I’m doing crappy and the agreements led nowhere. Then, my mother-in-law helped me word my wishes for the meeting: to discuss my wish to get insight into my care plan, including allocated extra care hours (what I call “one-on-one” here), and to discuss my wish to start the process of finding a more suitable home. The behavior specialist is going to ask my support coordinator to get me insight into the care plan.

I did go into detail about why I want insight, namely the fact that I keep being told I ask for more than I get funding for. The behavior specialist told me she had heard that indeed the home provide more extra care than they get funding for. Whether this refers only to my one-on-one or to the thirteen hours a day total that there’s an extra staff member, I couldn’t get clear. I was quite worried in the former case, because I really can’t cope with less one-on-one than I get now.

My assigned staff confirmed that indeed sometimes – quite regularly in fact – my one-on-one that I’m supposed to get according to my day schedule is cut short due to for instance another client acting out. She explained that my staff is the first to come to their coworkers’ rescue. This is somewhat understandable, because the other extra care client at least on the surface appears to need her one-on-one more and it isn’t like staff should be beeping for other homes’ staff to come to their rescue when there’s one available right in my room. However, I do suffer significantly from this. Yesterday, due to this situation, I self-harmed twice.

The things I said could improve my care here, according to my staff, weren’t realistic. This is understandable, among other things due to the fact that I am usually supported by temp workers. We might be able to tweak my day schedule and the list of support agreements a little bit though.

Then we got to discuss what type of home I’m looking for being moved to in the long term. My assigned staff is pretty certain that I shouldn’t be placed in another intensive support home, but the behavior specialist didn’t seem so sure. She pointed out that some staff at my old care facility had struggled to support me. She also made it clear that there’s this rigid divide between support and care, where you either need behavioral support or you need a care-based approach. Something inbetween doesn’t seem to exist.

The behavior specialist asked me whether I’d mind having to live in a smaller space, like just one room, not a separate living room and bedroom. I told her I had that at my old care home and considered that room pretty spacious. I know most rooms at care-based homes here on institution grounds are smaller than what I had there, some actually with shared bathrooms. I don’t even mind that, although I’d need a staff to make sure it’s clean when I need to use it.

We also discussed my preference for staying with this care agency, but if this agency doesn’t have a suitable home, I don’t mind moving to another either. I said, and my husband confirmed this when I texted him about it, that it’d be ideal if a new home wouldn’t be too far from where he lives but that isn’t a top priority.

Overall, the meeting went quite well. At least, my assigned staff understood my point of view and the behavior specialist is willing to start the process of finding me a more suitable home. She also admitted she hadn’t realized when placing me here that it’d be as chaotic as it is here.

Thankfully, my assigned staff isn’t going to give up on me. I specifically asked about this, because several staff have been saying things along the lines of: “Why should we even try our best to make things better if you want to leave anyway?” I understand big changes aren’t going to happen if I’m leaving anyway, but then again they aren’t happening if I’m not leaving either. Tiny things that will make my life easier, can still be done though.