Attention Is a Valid Human Need

Posted on by Astrid

Hi everyone. One of the prompts for this week’s Writer’s Workshop is to write a post based on the word “attention”.

This immediately brings back a flood of memories of my time at the intensive support home. On one particular occasion – but I’m pretty sure there were many more -, a staff said to her coworker about a client in crisis: “It’s all attention.” She said “attention” in English, not Dutch, apparently hoping the client in crisis or his fellow clients (including me) wouldn’t understand. One of my fellow clients immediately chimed in by translating her comment into Dutch.

The idea that challenging behavior is “for attention” is often not entirely based in truth. However, even if it is, attention is a valid human need. And especially at the intensive support home, clients routinely didn’t get it.

You might think we did get more than enough attention, since the staff/client ratio is 1:2 to 1:3 at this home. But more often than not, staff were doing stuff on their phones, chatting to each other and on at least one occasion, I caught two staff playing a board game together and the third cheering for them. That third person was my one-on-one for the moment, but, because I was also playing a game with a fellow client, the staff thought it not necessary to pay attention to me. Then when I started showing signs of distress, he missed them until I ended up in a meltdown, then told me I could’ve said in a calm voice that I wanted to go to my room. Well, guess what? One of my first signs of distress is an inability to communicate effectively.

On another occasion, the fellow client about whom the staff felt the need to communicate his “attention-seeking” in English, was having an outburst again. I told my one-on-one for the moment that I could see why, because he’d been left to his own resources, often locked in his room, for most of the day. My one-on-one told me he’d had more than enough attention, since he had been having a cup of coffee with the client and had created his day schedule. As if a fifteen-minute coffee chat means you can be left alone for the rest of the day.

Remember, I and my fellow clients have a developmental disability. Most of us cannot participate in everyday conversations among non-disabled people, so when the staff are chatting to each other, most of us will feel left out of the loop. And just because staff are in the same room with us, doesn’t mean they’re attending to our needs, as my example of the board game illustrates. At that point, I needed someone to pay attention to the subtle signs that I was going to land in a meltdown.

And like I said, attention is a normal human need. Staff aren’t telling each other that they’ve had more than enough attention because they’ve had a break (that usually lasts for 45 minutes, four times a day) together. In my opinion, honestly, they should.

10 on the 10th (September 2024): This or That?

Posted on by Astrid

Hi everyone. Today I’m participating in 10 on the 10th. This month, it’s a fun this or that. Let’s get into it.

This or that: A long term meaningful relationship with someone you see only once a year (platonic or otherwise) or lots of short term relatively meaningless relationships with people you see regularly.
This is a toughie, as I’m not sure what “relationship” means. Do professional relationships count too? In other words, would I be completely on my own aside from the one time a year I’d see my significant other? That’s impossible for me. However, if it means not having any real connection with anyone else but they could still help me (yet how would we define “connection”?), I’d definitely choose the one meaningful relationship. I, after all, would choose my spouse even for a once-a-year visit over all the meaningless interactions with my staff. I however do need to receive care.

This or that: A bouquet of fresh flowers every week or a flowering bush every year.
A flowering bush every year! I don’t really care for bouquets of flowers and I’d love a flowering bush in my yard-space-thingy at the care home.

This or that: A luxury, all expenses paid cruise to the Antarctic or a week in a beach shack off the beaten path.
A cruise to the Antarctic. I’m not a fan of the cold, but no-one said we had to leave the ship. And I don’t care for beaches.

This or that: Pumpkin spice everything or pumpkin spice nothing.
Pumpkin spice nothing. The only thing with pumpkin spice in it I like a little is coffee, but it isn’t like I don’t enjoy coffee without it.

This or that: Warm, sunny days with high humidity or cold, sunny days with little humidity.
You’ll probably be surprised here, but I’d choose the cold but sunny days with low humidity. Having recently experienced warmer, high-humidity weather, I feel that as much as I loved the heat, I hated the humidity. Last night, in fact, was my first night of not sweating profusely and I am so glad for it.

This or that: A vintage real fur coat or a new faux fur coat.
New faux fur coat. Until I read Marsha’s answer, I didn’t even realize faux fur is bad for the environment, so I thought choosing the new faux fur coat would be a win-win: new coat plus less animal cruelty.

This or that: The car of your dreams wrapped with a logo of some kind or the car you currently drive.
I don’t drive a car, since I’m blind, so I’m going to choose for my spouse and we’re both happy with the “Freezer Fiat”, my nickname for the car my spouse currently drives. My spouse, in fact, only started the lease on it last January and this one is pretty much our ideal car. In this sense, I get it both ways. Although I personally wouldn’t mind a logo, I know my spouse wouldn’t tolerate it.

This or that: Beautiful stilettos crafted specifically for your feet or sneakers you’ve worn and molded to your feet.
I guess the point of this one is to choose between beauty and comfort and, if you’ve read about my shoe saga, you know I’d choose comfort. My orthopedic shoes are quite ugly but they’re comfortable. Same for my walking shoes, which I actually think are sneakers. Besides, I absolutely cannot walk on heels so stilettos would basically mean a life without walking.

This or that: The house of your dreams painted in colors you despise or a small cottage you can paint in colors you love.
I would personally choose the house of my dreams, but since that basically is a small cottage because I’d get lost in anything larger, I get it both ways again. I am blind, but still would love to have my little living space painted in all pastel lilacs and pinks.

This or that: Your favorite food every day for a year or foods you’ve never tried every day for a year.
My favorite food everyday for a year. I don’t like to try out new foods and would hate to have to try new foods each day for a year. Of course, it would get a little boring eating the exact same food everyday, but I’d take that over having to try out something I probably won’t like.

#WeekendCoffeeShare (September 7, 2024)

Posted on by Astrid

Hi everyone. Today I’m joining #WeekendCoffeeShare. It’s 7:40PM as I start writing my post, so like most times, I’ve had my last cup of coffee for the day. I will have a glass of my favorite soft drink in about half an hour and after that it’s just water, or maybe a cup of bedtime tea. However, I’d love for you to join me for a virtual cup of coffee. Let’s get into my post.

If we were having coffee, first I’d rave about the weather. After all, if you know me, you know that in my opinion summer is the best season. It’s September, but the weather is still summer-like. During most of the week, we had daytime highs above 25°C. Tomorrow, it’s supposed to cool off slightly and after that, sometime next week the temps are supposed to drop to 15°C.

If we were having coffee, I’d tell you that I got in a lot of exercise minutes over the past week, mostly walking. I’m doing a challenge with my spouse on our Apple Watches that lasts up till this Monday and so far, I’m doing much better. I had expected to be slightly better because my spouse is a truck driver, but then again we have the same movement goal even though I’m shorter and as a result lighter than my spouse, which means I burn off fewer calories with the same activity.

If we were having coffee, I’d share that I had my second play therapy session on Wednesday. The first was a bit of a disappointment, because as soon as she saw my staff, the therapist started saying I could come alone next time. I felt mostly disappointed about the fact that she hadn’t asked me or my staff why I need a staff to attend our sessions. When I explained this at this week’s session, she was totally cool with it.

We mostly played with PlayMobil®, which was really intriguing. I did overshare a bit this week, which I later regretted. It feels really challenging to set healthy boundaries, which is one of my goals that I told the therapist about.

If we were having coffee, I’d share that I spoke with my support coordinator again today. On Monday I had a meeting with her and the behavior specialist. One of the things I’d asked to be implemented as soon as possible, is the agreement that staff won’t unlock the door for me when I’m in crisis and will, if necessary, physically prevent me from leaving the home. I had since wondered where the agreement that the door be unlocked came from. I looked at my support agreements, but there was nothing. Today, my support coordinator looked all through my file and couldn’t find the agreement either. This frustrates me, as honestly I have no idea who came up with it. It wouldn’t have been as frustrating, had this not been interpreted as a rule by literally all staff, even staff who hadn’t previously let me out the door. I mean, on Thursday I said I was leaving in an agitated tone and immediately the staff said she’d unlock the door for me. It frustrates me to no end that staff are making rules that they don’t write down and that, as a result, can’t be discussed with me. I hope that, once my support coordinator writes the agreement that I can’t be let out the door, which she’s going to do on Tuesday, this at least will stop in this case. I’m pretty sure there are many other unwritten rules about my care though.

If we were having coffee, lastly I’d tell you I’m really feeling like doing something with polymer clay again, but I am rather uninspired. I did try to make a flower pendant this evening, but so far it’s just a cut out flower with no detail.

A Good Meeting With My Support Coordinator and Behavior Specialist

Posted on by Astrid

Hi everyone. I really want to write more about what’s on my mind and, after a few months of struggling, I finally have some good news. I just saw in my private journal in the Day One app that it was a year ago when I heard my moving date to this home. I moved two weeks later. How time flies! After a meeting with the behavior specialist and my support coordinator on Monday, I can safely say that, if the things we agreed on will actually happen, I’m going to have a pretty good life here.

I had requested this meeting a few weeks ago and it was originally scheduled for the 17th of September, but thankfully there was time to do it on Monday. We mostly discussed a document I’d written sometime in early August detailing my care needs (as I see them). Thankfully, most were things the behavior specialist and support coordinator could agree with me on. Here are the things we’ve decided.

1. Less staff switches and more clarity about who will be supporting me during the day. Currently, it’s only clear who will do my two-hour-long activity in the afternoon and the rest is guesswork. I wrote that I can’t help trying to figure out in my head who will be supporting me for which of my eight or so support moments during the day. The support coordinator and behavior specialist came up with a schedule for who will support me when based on what times each staff comes on. This, and all other agreements, won’t take effect until sometime in late October.

Staff will also get designated time to write up their daily notes about me. I also requested staff do a short handover (like, two minutes on how I’m generally doing) when they switch. I can’t remember what was agreed upon about this, but it should be relatively easy with the fact that I’ll have mostly no more than four staff supporting me over the course of the day.

2. My day schedule for weekends will be changed to be the same as my weekday schedule. Currently, there’s a fifteen to thirty-minute time difference, which is confusing. I originally proposed to remove an activity time slot from my one-on-one on weekends, so to make it very different, but that didn’t seem to be a good idea. I honestly mostly said this to stick to my allocated one-on-one hours. After all, the other support coordinator used to be really strict on these.

They’re going to try to get me slightly longer staff support in the evenings. Currently after 7:15PM, I’m supposed to be by myself except for a few two-minute check-ins.

They were also very clear that appointments with the physical therapist, play therapy etc. are not dependent on my day schedule. What I mean is, if they happen to be during a support moment, fine, but if the therapist’s most suitable moment is outside of my one-on-one, that doesn’t mean I’ll need to compensate or go to therapy without staff support. The other support coordinator had been shoving my day schedule into the physical therapist’s face before she could even pull out her calendar, which led me to say that PT isn’t day activities so shouldn’t be during my activity time slot and I’ll go alone if this means no support.

Finally, it was agreed upon that, if I come out of my unsupported time in distress, staff will help me and this does not need to be compensated for (unless it takes so long that staff’s other tasks will suffer).

3. The support coordinator will be advocating for there to be a trusted staff for me at least part of the day most days. The other support coordinator is the home’s planner and he’s been really tough to get along with, so we’ll see where this goes.

The support coordinator did say that she and my assigned staff will try to see me regularly too. I can also ask one of my trusted staff whether I can talk with them (support coordinator or assigned staff) about something.

4. I asked for recognition of how far I’ve come over the years with respect to for instance accepting temp workers, accepting unexpected staff changes, etc. This was quite a hard one to explain, but it eventually made sense.

5. I asked to no longer be let out the door when in distress. I agreed to be physically restrained and led to my room if necessary too. This is going to take effect sometime next week, since I felt really let down when the staff opened the door for me.

I later realized that this is really already in my crisis plan, but it contradicts the support agreement that I’m free to leave the home as I please and as such staff unlock the door when I want to leave. How this will all be put down on paper, is not fully clear with me, but I’m confident it will work out.

Overall, I’m really pleased with the outcome of this meeting. The only problem I can foresee is the other support coordinator, who is really coordinator for my side of the home, discarding everything as unworkable.

Reading, Watching and Listening Lately (September 2, 2024)

Posted on by Astrid

Hi everyone. I originally intended to do a reading wrap-up, but then decided that I want to include things I’ve watched or listened to as well. I hope that means my post is still welcome with It’s Monday! What Are You Reading? (#IMWAYR). I’m also joining Bookish Bliss, Musings and More.

Reading

I said this a few days ago already when writing about my love of memoirs, but I recently started reading a book by a relatively new foster care momoirist. The book is called Jacob’s Story and is written by Louise Allen. I think that title is horribly unimaginative, but the story is good. Louise mostly writes from her own perspective, but the prologue parts are written from other people’s perspectives.

I’m also reading a children’s book, Shamrock’s Seaside Sleepover (Unicorn University, #3) by Daisy Sunshine. The first two books in the series, I finished in one sitting but I apparently didn’t feel as much in tune with my inner child when first picking this one up.

Lastly, I’ve been diving deep into the Enneagram again by reading The Complete Enneagram by Beatrice Chestnut. I’m not a Christian, so most Enneagram books don’t fully speak to me as they’re Biblically-based. I still, as a spiritual seeker, find some elements to be useful though. However, this book is totally accessible to people of all spiritual or religious walks of life.

Watching

I don’t currently have a subscription to any streaming services except for YouTube Premium. I also haven’t watched anything of note on YouTube recently.

Listening

First off is the podcast The Art of Growth. I listened to an episode published some months ago in the series Nine Love Languages, specifically the one on type 4. This was also what got me into reading Chestnut’s book.

I also am a lover of true crime podcasts. The episode of the podcast Cold Case Files I listened to recently had me totally chilled to the core. It’s called The Perfect Murder.

I usually listen to podcasts on the app Downcast. I used to love Overcast, but they stupidly revamped that app so I no longer use that one. Besides, though both apps are in English, only on Overcast does VoiceOver recognize that, which is a drawback since it then starts reading the titles of Dutch-language podcasts with a strong English accent. I’d rather have it the other way around, as on Downcast. Both apps will let you manually add podcasts from a URL, but both have a search feature too, through which I found the podcasts I mentioned.

Play Therapy #SoCS

Posted on by Astrid

I had my first play therapy session on Wednesday. That is, I used to have play therapy when I was in elementary school. That was nearly 30 years ago though. Yikes, how time flies!

Anyway, I only had four sessions back then before the school holiday and apparently those were either enough or my parents didn’t consent to more play therapy. Not that they were paying, but oh well. My parents were very reluctant to agree to these first sessions anyway, because they were suspicious of anyone in the helping profession, including the play therapist. I wonder why, since the goal of therapy was that I not get angry as quickly anymore. I back then denied getting angry much at all. However, I did play with toy weapons all the time, threw out the purple-haired dollhouse figurines because people don’t have purple hair and tried to overflow the water tray. That might have been telling. Or not, since I don’t know whose initiative the toy weapons were.

I hated play therapy though, because I had to go to it during my favorite subject in school, biology. I wonder honestly what the point was.

Same now. I was initially told, back in February when I had the intake interview for therapy with two different therapists, that the type of therapy I’d get was called something like “differentiation therapy”. I filled in what I thought this meant and behaved in a way that I thought was consistent with this. I thought that the goal is to learn to identify different feelings, so this Wednesday I constantly named the attributes of the objects I played with. The therapist did note that I was adamant about which types of play-doh I liked or didn’t like, but she didn’t write anything about me constantly saying, for example, that the PlayMobil® figurine was giving its companion its left rather than right hand, etc.

I’m pretty sure I was trying to show off with this behavior. I’m now scared she’s going to think I’m far more capable of identifying feelings than I am. Or think I am. Or whatever. I hope we’ll get something out of play therapy this time around, unlike back in 1996 when I was ten.

This post was written for Stream of Consciousness Saturday (#SoCS), for which the prompt is “school”. I interpreted it loosely, because I really wanted to write about play therapy. I’m going to write an actual post on my first session later.

Memoirs and Biographies

Posted on by Astrid

This week, there are many interesting prompts for the Writer’s Workshop. I am still thinking I might write on a different prompt tomorrow, but usually I don’t get to it. Today, I’m choosing the prompt about memoirs, biographies or reference books. They are, after all, my favorite genre to read.

I was not an avid reader as a child. Still am not a voracious reader, but I did discover the love of reading through memoirs and autobiographies. When I was in my late teens, I briefly was a member of the UK’s national library for the blind. They sent me Braille books. Yes, the clunky hardcover volumes (often eight or more per book).

I usually chose memoirs. Among my favorites were Planet of the Blind by Stephen Kuusisto and Emma and I by Sheila Hocken.

The first is an autobiography by a person blind from the same eye condition I have. If I’m correct, Kuusisto had some vision as a child but lost it later on, like I did too.

The second, which is the first in several books, talks mostly about the author’s experience of getting a guide dog.

I eventually got kicked off the library service for losing two volumes of a book, I’m not sure which one, in the mail back to them. However, this experience is probably what got me to love memoirs and autobiographies.

I currently often read foster care memoirs. My favorite authors are Casey Watson and Maggie Hartley. Cathy Glass is good too, but she stopped writing.

I recently discovered a new-to-me foster care memoirist, Louise Allen. That’s not entirely correct: I had heard of her a while ago, but because her books have horribly nondescript titles like Jacob’s Story, I didn’t fancy reading them. Now I am currently reading Jacob’s Story and think it’s fascinating. I must say though that the book is really a crossover between fiction and memoir, since the author writes from perspectives other than her own too. That makes it all the more intriguing, but I’m not entirely sure the books would count as memoirs.

Daily Habits I Already Do That Improve My Quality of Life

Posted on by Astrid
Daily writing prompt
What daily habit do you do that improves your quality of life?
View all responses

So many times, we think about the habits we could add to our daily routine to improve our quality of life. I at least do and then the only thing I do is make a list of them, but I don’t actually add most habits to my daily routine. I must admit, there’s very little I do literally everyday. This, however, is a nice reminder to look at the tiny things I do (almost) daily that improve my life.

  1. Get up at a reasonable time. I used to be a big one for lie-ins until late morning or early afternoon. Now though, I always get up between 8AM and 8:30AM. Yes, also on weekends. I sometimes go back to bed after breakfast for about half an hour, but I consider that my chill moment rather than me needing the extra sleep.
  2. Eat breakfast. I sometimes skip lunch or dinner, but I never skip breakfast. This hasn’t always been the case. Like, when I was a teen usually the first thing I’d pop into my mouth would be a candy bar or two from the school vending machine. Even when in the mental hospital, I’d often not wake up until mid-morning or later and would skip breakfast.
  3. Brush my teeth. This is another one that hasn’t always been this way. Like, in the mental hospital I’d skip toothbrushing more often than I’d actually do it. The staff thought that I just didn’t want to brush my teeth and,, since I had a borderline personality disorder diagnosis, this was considered “my choice”. However, I struggled with the feel of the manual toothbrush, the taste of toothpaste and I’d often simply forget to brush my teeth.

    Now, I get reminded to brush my teeth and my staff supervise me. Though I haven’t found a solution to the toothpaste issue, using an electric toothbrush helps a lot already.
  4. Go for a walk. Or several. This is something I don’t literally do everyday, but 99% of the time, I go for at least one longer walk.
  5. Call or text my spouse. Social interaction helps improve quality of life too, so I include this one. I sometimes am so busy with my morning activity that I don’t text my spouse until early afternoon, but not a day goes by when we don’t interact.

Looking at this list, most of these habits I do in the morning. That’s so interesting, since I consider myself a night person. Things I do in the evening that improve my life, however, aren’t usually literally daily habits.

If You Aren’t Prepared For an Imperfect Child…

Posted on by Astrid

Yesterday someone on Reddit’s Childfree sub asked why many parents-to-be have this idea that they’ll get the perfect child. You might say that having dreams for your unborn child is normal, and it is. Having this clear-cut image of what your child will (that is, should) achieve in life, is not.

Of course, there are thankfully many parents who are able to adjust their image of their child if (or rather, when) said child does not conform to their initial expectations. My parents, unfortunately, are not among them.

Like I’ve probably shared on this blog before, when I was a baby and sustained a brain bleed due to premature birth, my parents were concerned for my quality of life. This is more or less normal, although it wasn’t back in the ’80s. In fact, the doctor flat out told my parents not to interfere, since they were keeping me alive period. I am forever grateful for this, despite the fact that the same doctor admitted in 2004 that he sometimes meets former preemies he’d been keeping alive that he now thinks of: “What have we done?!”

At that time, I thought he would not mean me. I was still passing for “just blind” and, though blindness is considered a major disability, it’s one that by itself does not prevent someone from living independently and going to university.

That was the exact same reason my father, when talking about euthanasia of severely disabled babies in 2006, didn’t mean me. He did, however, mean those with intellectual disability and those with severe mobility impairments (the case at hand involved a baby with severe spina bifida). And I’ll never forget that he added to his statement that he didn’t mean me, “because you’re training to live independently and go to university”. As you all know, that didn’t work out.

My parents did find a workaround to the problem of my not being the perfect child they’d envisioned: they decided that my landing in the mental health system and now in a care home for those with intellectual disability, is my choice rather than a necessity. I haven’t fully processed all the ways in which this attitude, which some of my care professionals took over, has impacted me. It hurts though.

Now back to the idea of a perfect child. Even when disability isn’t involved, a child is their own unique individual, with their own strengths, weaknesses, wants and needs. When a parent decides that their child should go to university at eighteen even though they are still in Kindergarten, like my parents did, that doesn’t just impact a disabled child. It impacts any child for whom for whatever reason university isn’t the best place to go at eighteen. Such as, for instance, any child with an average or even slightly above-average IQ. Or any child that is more capable of practical jobs than of academic ones. And any child who, God forbid, doesn’t want to go to university.

If you aren’t ready for a disabled child, a child who isn’t a top achiever, a child who might I say has their own personality, by all means don’t become a parent. You don’t know what your child will be like, after all. Having dreams is alright, but be ready to adjust your image of your child when the need arises. And for goodness’ sake, don’t guilt trip your child for being themselves.

I’m linking this post up with this week’s #WWWhimsy.

#WeekendCoffeeShare (August 10, 2024)

Posted on by Astrid

Hi everyone on this beautiful Saturday in August. I’m joining #WeekendCoffeeShare today. It’s nearly 10PM, so I’ve long had my last cup of coffee and my soft drink for the day. I, however, do have Kinder Country candy bars in my cupboard, as well as lots of other candy. I bet I could persuade the staff to open the cupboard for you, but I can’t persuade them to brew you a coffee. Water will have to do. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, I’d start by sharing about the weather. It’s mostly been quite warm with daytime temps in the mid to high 20s Celsius. We did get rain yesterday, but thankfully no thunderstorms. On Monday, the daytime high is supposed to be 32°C. I’m a warm weather person, but that’s too hot even for my liking.

If we were having coffee, I’d tell you I did a lot of walking over the past week. On four days out of the past seven, I got in over 100 exercise minutes according to my Apple Watch and I didn’t even go swimming this week, as the institution pool is closed now.

If we were having coffee, I would tell you that I’ve been struggling a lot lately. Part of the reason I’m showing it more might be the fact that I discontinued my morning dose of topiramate a little over a month ago, but it’s not (just) that which explains why I’m feeling like crap. After all, I’ve been feeling like crap for months. Make that years, honestly. I am realizing I never recovered from the blow to my self-esteem that was being more or less kicked out of the care home in Raalte. No, don’t interrupt that I wasn’t kicked out, since I know I literally wasn’t. However, when I realized the intensive support home was the nightmare it was and asked to be put on the waiting list to return (or actually return, since I asked before my room was filled up), I was told that some people had actually been glad that I’d left.

Why is this relevant now? Because, even though my current home is better than the intensive support home, I’m still feeling like I’m massively overloaded and my capabilities are massively overestimated when I’m struggling. This leads to staff not following my current support agreements, which even when followed to a T create just about barely manageable a care situation if even that when I’m feeling low (they’re okay when I’m feeling good). I know I said the same of my day schedule back at the intensive support home, but I only said so because my staff there had already decided I was a spoiled brat and wouldn’t stop complaining until I had full-time one-to-one. Which was almost correct before topiramate, but it wasn’t when I was on this medication. And it isn’t now either. After all, when I wished for near full-time one-on-one back in 2021, I didn’t realize its implications in care. I do now.

I realize I might need to go back on my full dose of topiramate (even though the evening dose is going to be discontinued next week too), but I don’t think it’s an excuse to keep everything else the exact same, since my needs weren’t being met before I discontinued this medication. In short, yes, the med might get me to shut up, or it might not, but either way something else needs to change too.

After many meltdowns, I finally wrote down my care needs in a document and E-mailed this to my assigned staff. I did water them down a little to make them manageable within the way my home operates, but not so much that I’d have every reason to still complain if the team decide to implement this. At the end of the document, I put in a brief summary of my care in Raalte (in early 2022, so when the team had already fallen apart) and asked for recognition of the improvements I’ve made since. I mean, I don’t seriously request to be moved now (I do blurt it out during meltdowns) and I wish I got half as suitable care as I got back then.

The support coordinator mostly making decisions about me, is on vacation now, but she’ll return on Tuesday. I hope I’ll have a meeting with her and the behavior specialist soon to discuss my needs.

If we were having coffee, lastly I’d share some positives of the day today. I realize this post was mostly negative, after all, but today was a pretty good day. Here are some reasons why:

  • My assigned staff was here this morning.

  • She brought me a cup of coffee right when waking me up.

  • Even though we were late finishing my morning routine, the staff coming for my morning activity came right on time.

  • I went for three walks today.

  • I had a waffle with forest fruit jelly, powdered sugar and whipped cream on it with my afternoon coffee. And a macaron in the morning. Sorry not sorry, dietitian.

  • I was able to ask the staff who did my afternoon activity with me, whether she’s leaving (which I thought because I’d seen her with a client from another home) and thankfully she said no. I am proud of myself for up front asking her rather than getting distressed.