Hello Monday (July 24, 2023)

Posted on by Astrid

Hi everyone. I’m joining Hello Monday for a weekend recap. The weekend was a true mixed bag, but those who know how much I’ve been struggling please do read on till the end for some exciting news.

Saturday was a truly crappy day. I got a total stranger as my one-on-one for the morning. This is not unusual, but the crappiness started as soon as I voiced my discomfort with her being a total stranger. Rather than try to comfort me, she was like: “What about if I leave you alone till coffee time?” Coffee time is at 11AM and it was just past 10AM. I said no, because despite what the staff here seem to think my one-on-one isn’t a mere suggestion. Fifteen minutes later, she was like: “I haven’t had breakfast yet. I need to grab some food, see you at coffee time, okay?” I went to the communal room, where my assigned staff happened to be, who set this straight with my would-be one-on-one. After that, we played some card games, had coffee and then she quickly decided to swap places with another staff. He’s not a stranger. Not someone I get along with, but at least I know what to expect of him (which is very little, to be honest).

In the evening, there was a staff shortage until 6PM and of course I was asked to come to the communal room to unburden the staff (his literal words). Then I got a staff I barely knew once again and only could play card games once again.

Sunday was better. I did get an unfamiliar one-on-one in the morning, but at least my spouse came by for a visit. We once again drove to Apeldoorn for lunch at Backwerk and hopped into Holland and Barrett for some essential oils. My spouse got a discount card even though we rarely shop there.

In the evening, my new support coordinator – did I share my old one left the agency a few weeks ago? – was my one-on-one for an hour. We went for a walk and discussed some aspects of my care, both unaware of the E-mail landing in my inbox at 7PM. My mother-in-law had forwarded it to me. It was originally sent to her at 11AM that morning. The subject line read something like: Painting Astrid’s new room.

The E-mail started with something like: “I am [name], support coordinator for Astrid’s new care home, [home].” The person writing the E-mail then went on to tell my mother-in-law that, when moving, a client can have one wall in their room painted in a desired color, and which color would I like?

I had heard my assigned staff mention this home among the possible homes considered for me, but I had absolutely no idea I had been accepted into it. I don’t know anything about the home other than what the care agency’s website says, which isn’t to be trusted due to the fact that they make things look better than they are. However, it isn’t really like I care. Any small improvement over the care I receive here is greatly appreciated.

Today, I confirmed with my support coordinator that I am indeed moving to this home. When the move will be, is not yet known for sure, but I’ll find out about two weeks in advance and be able to take a look around a few days before the actual move.

And for those who are wondering, I chose lilac as the color for my wall.

#WeekendCoffeeShare (June 23, 2023)

Posted on by Astrid

Hi everyone. I’ve once again been feeling really unmotivated to blog. I didn’t even bother with the Wednesday HodgePodge this week. Today though, I want to write. I’m joining the #WeekendCoffeeShare linky. It’s been a while. I already had my last cup of coffee for the day, but we all need to stay hydrated, so if join me for a glass of water, that’ll be fab.

If we were having coffee (or water, but I always start my paragraphs this way), I’d start out by sharing about the weather. Ours has been mostly sunny and warm with daytime temperatures of about 27°C. On Tuesday we had a thunderstorm here and on Thursday it rained continuously all evening. My spouse loves thunderstorms, but Lobith didn’t get any.

If we were having coffee, I’d tell you I have been struggling quite badly lately. The staff here seem to have decided to consistently send the least familiar to me staff member they have on board to do my one-on-one, even when that staff isn’t the least familiar with the other clients. I am of course the one labeled manipulative when I get irritable at the unfamiliar staff. I originally wrote a long rant about this situation, but deleted it because really it doesn’t help anyone.

If we were having coffee, I’d share that, due to these difficult circumstances, I’ve been feeling rather depressed and not as motivated to do much of anything. I keep playing dice games on my phone in an app called Dice World. I also play dice with most staff.

If we were having coffee, I’d share that my sister and her family are coming to Lobith tomorrow for an early birthday celebration for me. I will be in Lobith by about 11AM, though my sister won’t be there till 3PM or so. Unfortunately, on Sunday, my mother-in-law has to be on call for the animal rescue service she does volunteer work for, so we won’t be going there.

On Tuesday, which is my actual birthday, we invited my parents to come to Apeldoorn. We’ll hang out in a park close by where I grew up and then in the evening we’ll have dinner at a Thai restaurant.

I finally decided today that I do want to celebrate my birthday at the institution after all. I’m going to make cheesecake on Monday and we’re going to have French fries and a snack for dinner then.

If we were having coffee, lastly I’d tell you that I finally used my alcohol inks on a polymer clay project. I made earrings, of course. They’re a bit thick and I later found out my particular brand of alcohol inks isn’t very light-resistant, so the color will probably fade rather easily over time. At least now I know I can use my alcohol inks.

Also, I may get my ears pierced someday. I had my ears pierced in 2001, but wore large silver earrings right after the thingies they shoot into your ears when they pierce them. Thing is, I’m allergic to nickel and silver often contains that, so I got bad inflammation and eventually decided to let the holes close up. Now though I really want to be able to wear earrings again. My assigned staff offered to take me, so that’d be really cool.

How have you been?

#WeekendCoffeeShare (June 3, 2023)

Posted on by Astrid

Hi everyone on this first Saturday evening of June. I’m really motivated to write another blog post, so am joining in with #WeekendCoffeeShare. I’ve had all my coffee for the day. In fact, the other residents didn’t even want their evening coffee, so the staff made a cup of Senseo for me. I still probably need to drink some water, so if you’d like a glass of water too, that’s totally cool. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d share about the weather. It’s mostly been quite good, though not summerlike yet. The mornings in fact have been quite cold, but in the afternoons, it’s often warmed up to about 20°C.

If we were having coffee, I’d post pictures of the polymer clay unicorn with wings I created a few weeks ago. Although the glitter on its wings drooped a bit (or a lot), I think it turned out quite lovely overall.



If we were having coffee, lastly I’d tell you all about the meeting with the two behavior specialists – my own and one responsible for a potential new care home (or maybe several, they were deliberately vague) here on institution grounds – I had on Tuesday. Like I might’ve said last week, my assigned staff did mention a few care homes she’d heard about, but she wasn’t sure either and probably didn’t realize I wasn’t supposed to know. I obviously googled these care homes and also ran them by someone I know online who offered to help me prepare for the meeting. She also read the info the website provides on my current care home and concluded that it’s probably all “window dressing”, ie. the care agency trying to make a good impression on their site without giving much info away. She recommended I focus my points in the meeting on what’s important to me in staff attitude.

So that’s what I did. I told the behavior specialists that, regardless of what type of home I’ll move into, it’ll never be a perfect fit because there just aren’t enough people with similar needs to mine in the Netherlands. Therefore, what’s important to me is staff being willing and able to get to know me and accommodate to my needs without constantly shoving “how this home works” in my face. Of course, I did say I’ll need to adapt in some ways, but constantly needing to adapt to “how this home works” in every single way isn’t working for me. I explained that I’m significantly overestimated here at my current care home. I also explained that, while the staff have made some moves in my direction eventually, them majorly shoving “how this home works”in my face during the first few months significantly diminished my trust in them.

They asked a few specific questions, but mostly just listened to me. I hope something will come out of this.

#WeekendCoffeeShare (May 27, 2023)

Posted on by Astrid

Hi everyone. Today, I’m joining in with #WeekendCoffeeShare. It’s been forever since I last joined in with this linky, but I thought I’d share some highlights of the past week with you all. I just had my morning coffee, but am probably going to finish this post after lunch or in my 30 minutes unsupported time before my afternoon coffee. For lunch, I’m just going to drink water, but since this is a virtual get-together, I won’t keep you from grabbing a coffee. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that the weather has been a mixed bag lately. Early in the week, temperatures didn’t rise above 15°C and we had some rain, but today’s daytime high is supposed to be 22°C and the sky is clear. Next week, we’re even supposed to get daytime highs above 25°C.

If we were having coffee, I’d tell you I didn’t really get in as many steps as I’d have liked this week. On Wednesday, I had a bad fall while walking. I hurt my knee and elbow and was dizzy for a bit. Thankfully, I only feel my knee a little now. On Thursday, I only managed a few slow and short walks due to the pain though. I did meet my movement goal on my Apple Watch each day.

For the month of June, I’ve signed up for two challenges on the Challenges app. One is a month-long challenge where points are accummulated based on closing each of your three activity rings, while the other allows participants to choose between basing points on steps or closing of the movement ring (I chose steps).

If we were having coffee, next I’d share that I’ve been pretty paranoid about my support lately. I am finding that I look at everything as a sign that the staff are trying to cut back on my one-on-one support hours. Now they say I get two hours more a day than I formally qualify for anyway, so this makes me feel rather, well, off. I can’t see how I can cut back on my one-on-one support hours as is, but I am pretty sure the staff think I can cope with even less than the hours they claim I qualify for.

I mean, I can cope with about half an hour in the communal room playing a game with a fellow resident most days. Today though, I got overloaded by several different sounds (a staff loading the dishwasher, another resident coming into the room and talking loudly to the staff, etc.). While all of these sounds are to be expected in a communal room (though the staff loading the dishwasher could’ve closed the kitchen door), they did overwhelm me. I managed to keep it together relatively well, but did feel upset that my one-on-one staff of the moment didn’t pick up on the signs that I was becoming overloaded. He claimed I could’ve told him myself and that I was making a big deal out of nothing. This further contributed to my thinking that the staff’s aim is to get me to function in the group without one-on-one. Which, of course, I should really aspire for too, but with how overwhelming even half an hour is in that communal room, I can see this just means being confined to my room alone.

If we were having coffee, lastly, I’d tell you that, on Tuesday, I’m going to meet with a behavior specialist for another care home. Like I mentioned before, I really badly want to move out of this home and my current behavior specialist finally approved this last March. They are currently investigating two possible homes here on institution grounds, but aren’t sure yet whether either will be suitable. Wish me luck with the meeting.

Hello Monday (May 22, 2023)

Posted on by Astrid

Hi everyone. It’s been nearly a week since I touched the blog. Honestly, the week has been less than stellar, but the weekend was lovely. Let me share. I’m joining Hello Monday.

On Friday evening, I finally decided that, screw it, whether I’d get a staff whom I can trust to help me with my polymer clay or not, I wanted to clay. I put my clay box on the chair we don’t normally use, which did mean having to put several things that had been placed on top of the box on the floor. “Why is everything on the floor?” the staff asked me when entering my room. I replied that I wanted to create a polymer clay unicorn. “You do you,” the staff replied.

At first, she seemed rather uninterested and barely did the things I asked her up front to help me with. Eventually though, she did warm up to the idea of us working on a unicorn and she did give me feedback. The unicorn we created – and which I finished on Saturday morning with another staff – is the first one that has wings. It still needs to go in the oven and I intend to add glitter to the wings too.

On Saturday, I finished the unicorn, went for a walk and played a game of dice with a fellow resident here at the care home. Then, my spouse arrived to pick me up to drive to our house in Lobith. On the way there, we went into the carwash (€15 for a mediocre washing!) and got takeout Chinese food.

We had a relaxing evening at home. At around 10PM, my spouse suggested we go for a drive, as the car needed to be moved out of the street. After all, the town fair would be starting on Sunday and there’d be a procession going through our street. I forgot my passport, so we needed to stay in the Netherlands (Lobith is close by the German border). At one point, my spouse suggested we go to Burger King for ice cream, but it was closed. Next question: “Do we drive to Duiven to go to McDonald’s or go home to sleep?” I chose to go to McDonald’s. We each had a McFlurry. I had the Twix one with caramel sauce, which was lovely.

On Sunday, with the car out of the way, we could have a lie-in. I slept in until about 9:30AM.

Several weeks ago, I’d bought white jeans with my staff. I wore them for the first time on Sunday and at breakfast, they had coffee stains in them already. It looked rather gross (I’ll spare you my spouse’s description). For this reason, we decided to go clothes shopping yet again. We, like usual, went to Apeldoorn. I bought darker beige jeans.

We also stopped by Holland & Barrett, a wellness store, to look at nothing in particular. We left with six bottles of essential oils though. Initially, when looking at them, my spouse said: “Just tell me what you want, I’m not going to name them all, as they have everything.” I asked for clary sage. After looking for about ten minutes, my spouse at first concluded they didn’t have clary sage, then started naming some oils: “Clary sage, nutmeg, …” I said: “Clary sage, that’s the one I’m looking for!” I also got vanilla and jasmine oils. Don’t tell me these are usually either absolutes or oleoresins, not essential oils, I know. I am not sure about the quality of Holland & Barrett’s oils, but I don’t use them for any therapeutic benefits anyway. We also got a blend of roses and a blend of wildflowers just because one of my oils was one plus one free and the other was second at half price. Lastly, my spouse got rosemary.

We also obviously stopped by Backwerk to have lunch. I got a sausage roll.

In the evening, I started looking all over the Internet for blends to try with my new oils. Of course, I had had clary sage before, so only vanilla and jasmine were new, but I love all the possibilities. I created a blend in my diffuser this morning: equal amounts clary sage, vanilla, sandalwood and frankincense. This evening, I joked to my spouse that the blend made me high, because it’s so very calming. I love it though!

Hello Monday (May 8, 2023)

Posted on by Astrid

Hi everyone. My weekend was quite good, if a little hectic. I thought I’d share about it. I am linking up with Hello Monday.

On Saturday, I had a temp worker who was here for the first time as my one-on-one staff for most of the morning shift. Thankfully, I got along with him okay. This did mean I didn’t feel comfortable going on a walk, let alone working with clay or other crafty things. I did play a game of Yahtzee with a fellow resident in the morning. My weighted blanket was also finally put in the washing machine. I was a little worried that putting it in the dryer would damage it, but the staff told me he knew what he was doing. Thankfully, once I got back from Lobith on Sunday, I found out it was still intact.

In the afternoon, I got a new temp worker once again, but thankfully my spouse was here almost as soon as the evening shift started, so I didn’t have to deal with the temp worker long. We drove to my spouse’s and my house in Lobith, picking up groceries and Domino’s pizza along the way. I had the hot and spicy pizza with pepperoni, bell peppers, onions and jalapeños.

Because I hadn’t been walking all day on Saturday, I decided to do some dancing in the evening. Otherwise, I wouldn’t have reached my movement goal on my Apple Watch and I didn’t want to cheat by lowering it yet again (and I certainly didn’t want to break my 250-odd day streak).

On Sunday, we visited my in-laws for a bit. My mother-in-law and I went for a 40-minute walk through the village. In the evening, when I once again had a temp worker, but thankfully a somewhat familiar one, I went for two more 40-minute walks. Then, because I could, I danced some more. I finally doubled my movement goal on my Apple Watch for the first time in half a year.

Yesterday evening, I had a bit of an issue with my sister. I invited her to my birthday at the end of June, thinking that if I invited her now she would have plenty of time to make sure she actually could make it on one of the days my spouse and I are available. She got upset, because her and my youngest niece’s birthdays are first (this Saturday and on the 19th, respectively). She tried to ask me whether we would come over for her birthday too, which on the surface seems reasonable. However, being that she has both this weekend and the weekend after that planned pretty full with other family and, besides, we don’t do last-minute planning for trips that are this long (my sister and her family live over two hours away), I decided against it. According to my sister, the way it “works” in our family is everyone knows when our birthdays are and is welcome to come by, so it wasn’t like she should have invited me. Being the people pleaser that I am, I actually almost let her persuade me to allow her to ask her in-laws, whom I barely know, to pick me up when they would be visiting them on the 18th. Thankfully, my spouse intervened and told me that would be really unwise, since what if I have a meltdown either on the trip or when with my sister’s family? Finally, thankfully, it turned out she wasn’t really expecting us, but was just upset that I’d mentioned my birthday this close to hers. I can see her point.

Yesterday, as a side note, was my partner’s and my fifteenth anniversary of being a couple. I really feel pleased that we decided to “call it a relationship”back on May 7, 2008. We’ve overcome quite a few hurdles in those fifteen years, but I’m so happy that we’re stronger than ever together!

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.

#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.

#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.