Quality of Life #SoCS

Posted on by Astrid

Hi all. I haven’t written a blog post in nearly two weeks, since I’ve been struggling quite badly. However, I saw the prompt for Stream of Consciousness Saturday, which is “starts with Q”. Immediately, the word “quality” and, derived from that, “quality of life” came to mind.

I regularly write about this concept when discussing myself as a former preemie living with multiple disabilities. That’s not what I mean this time though. This time, I mean real, day-to-day quality of life. I’ve seriously been on a quest for a more meaningful life.

You might remember me talking about the cup of green tea I was allowed to have one evening. I said back then that it’s normal to choose when you want tea, so most people will not be appreciative of it. I was. However, as I spiraled further into depression, this cup of tea became the metaphor for how bleak my life is, actually.

It could be a lot worse. It was, back in the mental hospital, where, though I could grab food whenever I wanted (or at least I did), I spent most of my days lying in bed or surfing the Internet. Most of my fellow residents also have even less autonomy than I do. And yes, I know they’re severely intellectually disabled, but quite frankly that’s not an excuse. Just because you’re used to well-intentioned others making every single decision for you (and they are used to it as well!), doesn’t mean that’s how it’s always supposed to be. Or how it should be. Like I was at the time very grateful for the cup of tea at 9PM, that’s not how it always should be. That is, of course it’d be good if I remained grateful for a cup of tea, but in real life, I should be able to make the decision whether I want a cup of tea myself.

Unfortunately, I have a ton of ideas to improve my quality of life and gain more autonomy, but these don’t get to fruition. The reason is in part the fact that an idea has to be put into practice and executive functioning isn’t my best quality. Another reason is resistance from staff, either overt or covert.

I could write a book on all the ways staff have verbally, physically and in other ways hurt me under the guise of being human and having emotions too. Or conversely under the guise of safety for the group or that being the reality of staff-client relationships. But I won’t.

I’ll end by saying that, at least, on Tuesday I had a good day cooking curry for my side of the home. That’s what I mean by day-to-day quality of life: having the ability to prepare my own food, for example, or choosing what I’ll have for dinner. Of course, the other residents didn’t have a say in my choice to make curry, but they did appreciate it. We’re a long way from people in long-term care actually having meaningful lives, but this felt like a tiny contribution.

#WeekendCoffeeShare (July 12, 2025)

Posted on by Astrid

Hi everyone. It’s been a full week since I last wrote a blog post. I really would like to write more, but I’m struggling massively. Today, I’m once again joining #WeekendCoffeeShare. It’s 7:30PM, so no more coffee for me. I didn’t end up having the green tea I mentioned last week, but I might today. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. Honestly, I can’t remember what the weather was like early in the week, but the last few days, it’s been good: partly cloudy with some sunshine and daytime highs around 25°C.

If we were having coffee, next I’d tell you that I’m still going strong with my movement goal on my Apple Watch. I never ended up doing those fitness mat exercises I mentioned last week, because I had to cancel my movement therapy session this week. I’m hoping I can do some exercises next week.

If we were having coffee, then I’d share that I’ve been quite depressed lately. On Sunday, I was even talking ending my life and, on Monday, I had a meltdown in which I self-harmed.

The staff who witnessed me talk suicide and who was the only one able to comfort me after my meltdown, asked the behavior specialist and team manager to come and talk with me. This meeting took place on Wednesday morning, but another staff attended it with me. I was masking heavily during the meeting and constantly rationalizing my feelings away. The team manager at the end said that he was glad I was doing okay, because there’ll be a time when he won’t have time for a meeting. That plus something about things possibly getting worse. This caused my thoughts to spiral and this got me intensely desperate. I was able to tell the staff who’d attended the meeting with me, that this comment caused me distress and she would try to relay this to the team manager.

When, about an hour later, the staff who’d witnessed my meltdown etc. came on shift, I expressed my despair to her, By this time, I was inconsolable. I cried and cried and cried and was intensely hopeless.

Finally, the staff contacted the behavior specialist, who came again to talk with me and this staff. This was an okay meeting. I’m still skeptical things will improve, but not entirely hopeless.

If we were having coffee, I’d share that I’ve been reading some books about autism by autistic authors. One is The Autistic’s Guide to Self-Discovery. I’m unfortunately struggling quite a bit to concentrate on it, which in turn reinforces the belief that I’m too broken to benefit from it.

If we were having coffee, lastly I’d tell you that my best friend’s mother came by on Thursday. She brought the new nightstand that she and my best friend had bought at Ikea to replace the one that broke when I fell over it several weeks ago. She also brought me a birthday present: some colors of Sculpey Soufflé, which is a brand of polymer clay I don’t have yet.

We went to have lunch at Hema and then went to the supermarket to buy blueberries and candy bars for me and carrots for her. I also told her about my state of mind, since she’s currently my informal representative. I do want to make my best friend informal representative for me too, especially once we’re formally divorced. I still want my now mother-in-law on it too because she has the capacity to attend meetings with me. However, I mostly want to make sure that in no way are my parents or sister contacted to make decisions about me.

#WeekendCoffeeShare (June 28, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. No more coffee for me, as it’s nearly 9PM. I however do still have some slices of cake with nuts and caramel left over from when my sister and her family came over this afternoon. I also have a bag of mini brownies in my cupboard. I didn’t even know I liked brownies, but yesterday we got one with our coffee when my best friend, my parents and I were eating out. They were great! When my father told the waiter that it was my birthday, he offered me a bag of brownies as a treat. So let’s munch on some sweetness while we have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. No complaining from my sister or my nieces about the heat today, yay! It was 26°C this afternoon, but apparently that’s doable for them. The rest of the week was a mixed bag. Early in the week, we had quite windy weather that made it feel chillier than it was. I even wore a jacket on Tuesday.

If we were having coffee, then I’d share that, thank goodness, I survived my birthday! I’m now 39. That’s not what I mean though: I made it through both meeting my parents and the visit from my sister and her family.

Yesterday, my best friend and I drove to Groningen to meet my parents. We walked some time around a library / study hall thingy which had as its only positive for us that you could oversee the city from the roof. Most of the way up, we were able to use escalators, but we had to walk up a flight of stairs to get to the roof. This was a bit scary for me.

After a few hours, we went to a restaurant, the one with the brownies. I was dead set on ordering something I wouldn’t normally eat, so chose the rib eye. When I ordered, the waiter told me it was served with mashed potatoes and, by this time, I was a bit overloaded so didn’t ask for an alternative. Thankfully, my best friend did and I got fries.

The food was good, but seeing my parents was, well, awkward. Thankfully, no arguments and my parents engaged more with me and my best friend than last year. I, however, didn’t want to give them a reason to start making triggering comments so I only replied “Fine” when my mother asked how I was during dinner.

My sister and her family visited me at the institution today. This was actually quite a positive experience. My nieces, who are five and three, were also a lot more engaging with me than last year and a lot less cranky. I allowed both of them to create something with my Fimo Kids clay. I told them I’m going to cure their creations in the oven and could be mailing them their way. Then, my brother-in-law said they’d be in Apeldoorn in a few weeks and could pop over here to pick up their creations then. I actually think I like that.

If we were having coffee, then I’d tell you I got a fitness mat for my birthday from my sister and her family. I really want to work on my strength, but boy is this hard. I tried planking and couldn’t even hold it for ten seconds. When I did a few squats too then checked my heart rate on my Apple Watch, it was 179. It quickly dropped when I was just standing, but this is a good reminder I will want the physical therapist’s advice on starting a strength training routine.

If we were having coffee, next I’d share that we had the institution summer festival on Tuesday and Wednesday. I didn’t participate much, but I did take part in a climbing activity. This was so scary!

If we were having coffee, lastly I’d tell you my assigned staff, behavior specialist, physician and some others had their meeting with the Center for Consultation and Expertise (CCE) on Wednesday. The CCE are going to ask for a consultant to come to my care home and observe me and the staff and on that basis they’re hoping to provide suggestions for better support. I was initially quite pessimistic, but am now cautiously optimistic that things might improve.

#WeekendCoffeeShare (May 31, 2025)

Posted on by Astrid

Hi everyone. Today I’m joining #WeekendCoffeeShare. I originally wanted to write another post first, but got distracted by a dozen other ideas. It’s 9PM here, so no more coffee for me. I need to drink plenty of water because I have some extra fluid in my right leg. Let’s have a glass of water and let’s chat. Or if you’d like coffee, fine by me too.

If we were having coffee, first I’d talk about the weather. For most of the week, it’s been quite rainy and too chilly for my liking, even though the daytime temperature was probably still higher than it should be. Today though, we have sunshine and a daytime high of 25°C.

If we were having coffee, then I’d share that I haven’t been as physically active as I’d have wanted to be. Like I said above, I have some unwanted fluid in my right leg. My leg also hurts from muscle knots. I had a dry needling treatment at the physical therapist’s on Tuesday and am having another one next Wednesday. I am not 100% sure it’s working, as on Thursday my pain was worse and besides, I don’t know which pain or limitation is from the muscle knots and which is from the fluid build-up.

Today was a good day in the walking department though. Next week is the institution’s four-day walking event. I’m going to take part in the 3km walk, but I’ll be allowed to sit in a wheelchair as needed (thankfully, this event isn’t as strict on walking as some others are). That way, I can take part in the festivities and enjoy the experience but don’t need to overexert myself.

If we were having coffee, then I’d tell you about my creative endeavors over the past week. I finished two unicorns for the home’s volunteers on Monday.

That day, I also found out that one of the student staff would be leaving. He didn’t work with me, but I know him because he used to be a student staff at the care facility in Raalte before coming here. Back then, we used to go on walks together, taking his camera with us and snapping pictures which my image description app could then describe. The app wasn’t nearly as advanced as it is now, so I might want to look up some of these pictures and run them through Be My Eyes now.

Anyway, I wanted to craft something for him but didn’t know what until my best friend asked me what his hobbies are. I initially said that I don’t know, then remembered our photographing adventures back in Raalte and said “photography”. My best friend immediately suggested I craft a camera. I had never done so, but my best friend gave me some suggestions. Here’s the result. Be My Eyes recognized it immediately and even said that the photo of the back I took might be of a miniature camera.


If we were having coffee, then I’d share that I cooked pasta for my fellow residents on Thursday. It wasn’t as good as it could’ve been, because the veg had been overcooked and generally speaking the meal was a bit bland. Better luck next time.

If we were having coffee, lastly I’d share that yesterday, on the student staff’s last shift, I played DJ again at the other side of the home. I initially played some Dutch-language songs that were apparently not well-known, but finally I chose “Oerend hard” by Normaal and that had my fellow residents loudly singing along.

Overall, this week was a good one except for the pain.

Share Our Lives (May 2025): How I Celebrate My Birthday

Posted on by Astrid

Hi all! It’s the second Monday of the month and this means the Share Our Lives linky goes live. This month, the theme is how we usually spend or celebrate our birthdays.

My birthday is at the end of June, so the weather’s usually pretty good. That is, my parents used to joke that my sister, whose birthday is tomorrow, always got better weather on her birthday than I got. It isn’t true and, quite frankly, now that I have more insight into our family dynamics, it feels like one of their endless comparison games rather than a joke. But I digress.

My birthday and the time around it usually are quite stressful, since it’s the only time a year I ever see my parents and that’s with good reason. Over the past few years, my parents, my best friend and I have often been going out for dinner. It’s always awkward but was more so last year. I haven’t made plans with my parents this year yet.

My sister and her family will also visit me. Last year, this was a bit hard, as my oldest niece was tired and, being four at the time, easily bored. This led to her being cranky and me being cranky from being overloaded as a result. For my birthday this year, we’ve planned a relatively short visit.

All this being said, I do like to have somewhat of a birthday party at the care home. Even at the intensive support home, I treated the entire group to fries and a snack. Last year, I made a cheesecake and also treated the home to home-cooked burgers and salad.

I think gift-receiving is also a fun part of my birthday. The best gift I ever received was my music pillow, which my best friend gave me last year. My parents usually buy me a small gift plus some thrift store items. It may seem stupid, but I do like not knowing what I’ll get even though chances are I won’t be using it much. Besides, I haven’t bought my parents gifts in years.

Now that I look over this post, I realize I honestly don’t know why I usually say I like my birthday, as now that I’m an adult I could easily be buying my own gifts and I don’t like most of the company I get. I think part of it is childlike excitement.

Like a Rolling Stone… #SoCS

Posted on by Astrid

Today’s prompt for Stream of Consciousness Saturday is “favorite place”. I am not a fan of traveling, so I have absolutely no idea what my favorite place to go on vacation would be. I did go on a postponed honeymoon in 2012 to the Swiss town of Zug and it was beautiful. That is, walking through the mountains was quite an experience. The town itself was full of top-notch expensive cars.

We haven’t been on vacation since 2014 and, though my best friend and I (my best friend currently still being my spouse, for those who don’t know) have discussed vacation plans, neither of us is keen on going anywhere, honestly.

I would probably be considered a homebody. Except, what is my home? My staff often refer to the care home as “home” when talking to me, but it still feels off. And though I have no plans of traveling to any exotic locations anytime soon (or ever, considering most truly exotic locations are not easy to get to for someone who hates flying), I wouldn’t consider my room in the care home to be anything close to a favorite place. Or maybe it’s my least hated place out of all. After all, I’ve never truly felt home anywhere. Not with my parents, not in independent living or with my spouse nor in any of the places in the care system I’ve resided in.

I guess I’m like a rolling stone. After all, I’ve never truly connected to any particular place. This feels sad.

#WeekendCoffeeShare (April 27, 2025)

Posted on by Astrid

Hi everyone. I really wanted to write a #WeekendCoffeeShare post yesterday, but was dealing with neck and shoulder pain and was quite tired, so I lay in bed by 9:30PM. I originally intended this to be a quick lie-down and planned to write my post after my music pillow had auto-disconnected after thirty minutes. Well, before those thirty minutes were up, I set the pillow to keep playing until I either manually turned it off or its battery was empty. Guess what? I know for a fact that the latter happened sometime during the night, because the pillow was no longer connected when I woke up at 8:30AM, but I swear I didn’t hear its pretty loud sound indicating it needs charging. I slept like a log!

Anyway, all this to say I’m doing my coffee share on Sunday evening. I’ve just had my last cup of coffee for the day, but I can serve you some soda or tea. Let’s have a drink and let’s catch up.

If we were having coffee, first as usual I’d talk about the weather. We’ve had some rain, some sunshine and some clouds. Today, the daytime temp was 19°C. We’re supposed to get almost summerlike temps of 23-24°C this coming week.

If we were having coffee, next I’d share that I’ve been crafting again. I made several polymer clay frogs for staff members who are recovering from surgery. The frog (Dutch: “kikker”) is sometimes used as a symbol for cheering someone up (“opkikker”). The first one took me over an hour to finish, but the second one was so much easier once I’d figured out how I wanted it. Here’s the second one.

If we were having coffee, then I’d tell you that I have a new assigned staff. One of my two assigned staff is on long-term leave for familial reasons and the other is a student. I had been a bit angry at the student for various reasons, among which her way of communicating the temp worker situation with me. The new one will be my assigned staff together with the student. I can get along with her pretty well.

If we were having coffee, finally I’d make use of the fact that I write my coffee share on Sunday to share that my spouse and I had an important discussion today after our outing to have lunch and shop. We have made up our minds that we’re getting divorced. We will continue to be best friends, but since there’s no sexual or romantic component to our relationship and we’re not living together nor intending on ever doing so again, it makes sense that we officially divorce. We have been having this on our minds for several months already, so the discussion, though hard, wasn’t altogether a surprise to me. We mostly need to work out how much my spouse owes me for my contribution to our mortgage, so that the house can be completely my best friend’s and no longer mine. I guess I will from now on refer to my spouse as my best friend to ease the transition for me.

It may seem like I’m not affected emotionally by this decision, but I am. I mean, I’ve mentioned a few times that my spouse and I will always be soulmates, but the fact is nothing is for certain. When we got married after all, it was to affirm our everlasting love to one another. Though our feelings for each other haven’t changed all that much since we first met in 2007, there’s this voice in me telling me this is the beginning of the end. I tell myself this is attachment anxiety talking. Whether it is or this fear is real, doesn’t really matter in the present moment though, as right now we’re still soulmates.

#WeekendCoffeeShare (April 19, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare tonight. It’s almost 11PM here, so definitely no more coffee for me. If you’d like to grab a drink, feel free to and let’s chat.

If we were having coffee, first I’d talk about the weather. We finally got rain. Not as much as was originally thought and not nearly enough, but we got rain. The temperatures have also been lower, usually around 15°C. This is still warmer than normal, but I still yearn for 20°C.

If we were having coffee, then I’d tell you that, as a result of the rainy weather, I haven’t walked as much as I did in previous weeks. I still kept my perfect streak with respect to my movement goal on my Apple Watch, but didn’t meet my exercise goal everyday.

If we were having coffee, I’d share that I’ve finally been crafting again. I created a polymer clay bear holding a heart for my support coordinator, who is on maternity leave. Unfortunately, one of its ears fell off during baking, but thankfully I noticed it in time and was able to add a new ear.

I also made another attempt at creating a polymer clay trinket dish today, but failed once again.

If we were having coffee, I’d report that I had a meeting with the intellectual disability physician, who prescribes my psych meds, on Wednesday. The good news is that I’m allowed to further taper my antipsychotic. The bad news is no answers regarding my tremors. She thinks they may be related to my spastic cerebral palsy and this means that they can get worse when I’m stressed.

If we were having coffee, I’d tell you that I had a dietitian’s appt on Wednesday too. This went well. I’m staying in a sort of acceptable weight range and not having binge eating episodes or purging. My next appt will be in three months.

If we were having coffee, I’d moan about the temp worker situation once again. On Wednesday, when like I said I had two appointments, the staff wanted to orient a new “regular” temp worker to me. As soon as they told me, I told them that this wasn’t going to work out that day, but they kept telling me to see what’d come out of my doctor’s appt first and then we’d discuss it again. Well, no-one ever allowed for any discussion after the appt and, when the time came for the worker to be oriented, the staff doing the orienting kept pushing me in overt and covert ways to accept him. Like, the temp worker was constantly sneakily, without talking, being in my presence. This gave me a horribly unsafe feeling, because I, being blind, couldn’t be sure whether he was there or not.

The staff doing the orienting at one point seemed to show some understanding and told me she was going to talk it over with the other staff. She came back to tell me that it’d been agreed between my assigned staff, the support coordinator, behavior specialist and the team manager that, if I refused him now, I’d had my chance. She never told me who’d told her that when she was “talking it over”, so I assumed it was my assigned staff. I still refused the temp worker and to this day feel horrible about the whole situation. I mean, this whole agreement among the powers-that-be is showing that they believe I refuse staff for their one orientation moment just because I feel like it. Honestly, I still disagree with that whole thing about just one orientation moment and then they’re as regular as the regular staff who’ve worked here for years.

At one point, I went into the communal room and another staff, one of my “favorites”, was there. She asked me what was up and I explained that I had two appts that originally the staff didn’t think I could handle in one day and now they added this orientation thing to it too. The temp worker was present too and I told him it wasn’t that I didn’t like him, but he hadn’t even spoken a word to me during his previous shifts here and now he was creeping up on me. He apparently had been instructed to do so. The other staff understood and I actually talked a little to the temp worker.

Unfortunately, when I read my daily log notes for the past week today, I saw there wasn’t a single word about how I’d talked to him eventually. Neither was there anything about how I’d accepted the other temp worker (who’d had her orientation moment with me last week) for my activity on Tuesday, nor that I showed the new student staff my clay yesterday on his first shift here. This is relevant because it signifies that they’re still only reporting my challenging behavior and not the things I do accomplish in spite of the stress it gives me.

If we were having coffee, I would once again end on a positive note by sharing some small pleasures of the week. First was the BBQ on Thursday. It was good. Next up is a visit to the next town’s market yesterday. My spouse was a little surprised that I didn’t buy olives, as I usually buy those when going to the market. I did buy candy. I also went to the supermarket to buy some ingredients for my smoothies. We also went to that town’s coffee shop run by disabled people and had the most delicious caramel latte.

Speaking of which, I’d tell you that I’ve been having a new interest lately: coffee brewing. I’d really like to be able to create my own coffees. Still need to look into all the necessary supplies, but it should be fun.

#WeekendCoffeeShare (March 29, 2025)

Posted on by Astrid

Hi everyone on this last Saturday of March. I’m joining #WeekendCoffeeShare today. It’s nearly 8PM as I write this, so no more coffee for me. However, a fellow client’s parents brought us cheese, sausage and maybe other little snacks to go with our soft drinks this evening. I’ll have apple and peach-flavored Dubbelfrisss as usual. Let’s have a drink and let’s catch up.

If we were having coffee, first as usual I’d talk about the weather. It’s been mild most days with daytime temperatures around 15°C, though night-time temps have been around freezing. We had a little rain on Sunday I believe, but I think that was before I woke up. Honestly, I’m pretty sure nature could use some showers.

If we were having coffee, then I’d talk about my physical fitness routine. I am still going strong with my goal of a perfect month on my Apple Watch and, on Thursday, got in over 20K steps again.

If we were having coffee, then however I’d moan about my tremors. I’ve mentioned a couple of times that my right leg trembles horribly sometimes and, usually when it’s been happening, the rest of my body follows suit and starts twitching. Yesterday, it was really bad. My intellectual disability physician usually says it’s most likely influenced by stress, though both of us know that my medication (particularly my antipsychotic) could be causing it too.

With respect to my meds, I’ve often been reacting out of fear of becoming unmanageable and for this reason asking for a very slow taper. My physician has been constantly asking whether my life will become more difficult soon due to for instance more temp workers, because apparently that’d be a reason not to taper further for a while. Now I’ve decided that being manageable is not a reason to put my body through the effects of strong meds. Besides, yesterday I had an aggressive meltdown precisely because I couldn’t cope with the tremors anymore. Now thankfully on Monday my staff will contact the intellectual disability physician, my GP or both.

If we were having coffee, I’d also moan about my shoes. I’d worn one pair of orthopedic shoes for only a week last Thursday and they were already badly damaged. The physical therapist took a look at them and said she thought the orthopedic shoemaker might not have done the last repair properly. I’m not sure that’s the reason they get damaged so quickly. On Friday though, the physical therapist came by and took a video of my walking, which she is going to compare to a video she took about half a year ago. I’ll see her again next Friday and hope she’ll have some ideas.

If we were having coffee, I’d share that I’ve been having bad memories of my time in the mental hospital. Like I said above, the intellectual disability physician here constantly talks about the possibility of more temp workers as an excuse not to taper my medication. This was precisely why I was prescribed medication in the first place: I’d become severely irritable because of the large number of temp workers at the time and my psychologist was threatening me with seclusion if I continued to have meltdowns. Similarly, when on the locked ward, I was literally told I’d be locked up in the “quiet room” if I needed more care than they could provide. I realize rationally that this is institutional abuse, but I’ve internalized a lot of all the bullcrap institutions feed me.

If we were having coffee, I’d end on a somewhat positive note by sharing that the behavior specialist finally filled out the forms to get the Center for Consultation and Expertise involved on my case.

#WeekendCoffeeShare (March 22, 2025)

Posted on by Astrid

Hi everyone. It’s nearly 10PM here. I really wanted to write today but, for reasons I’ll explain in a bit, didn’t get to it. I’m joining #WeekendCoffeeShare. No more drinks for me except maybe some water, but if you’d like to, feel free to grab your favorite beverage.

If we were having coffee, first I’d talk about the weather. It’s been absolutely delightful. Yesterday, the daytime temperature was as high as 22°C and I wore a skirt. I usually don’t wear skirts in colder weather because I don’t like wearing tights. It felt so good to be able to wear a skirt. I also loved the sunshine.

If we were having coffee, then I’d tell you that I got in a lot of walking again over the past week. I really liked being active.

If we were having coffee, next, however, I’d share that I’ve been struggling badly again. I had an unannounced visit from the behavior specialist on Monday. My initial question was whether any progress had been made in involving the Center for Consultation and Expertise on my care. The answer to that was “No” and the behavior specialist didn’t offer any clarity on when she was going to get the ball rolling. My feeling is it’ll be 2034 by the time they get involved.

She did, however, have a lot of new so-called “agreements” (I’d call them executive orders) on my care. She pretty much ignored my input and there’s nothing about the things I said in the bullet points my assigned staff wrote in my records. Some of the new rules include:


  • New staff get only one chance to be oriented to me for each task (activity, morning routine, meal) and then they’re supposed to be “regulars” and can be assigned to me whenever the staff want. If I am not accepting them for their orientation time, it’s a missed opportunity on my part. I didn’t find out about that last bit until today.

  • I can be physically dragged to my room if I’m having a meltdown in the communal areas.

  • Staff will no longer be forced to rotate almost each support moment. Sounds good and it was what I wanted, but now they’re supposed to decide at the end of each moment who will come for my next moment, giving me only half an hour to adjust.

If we were having coffee, I’d tell you that the staff tried to orient three new “regular temp workers” (that’s an oxymoron in my opinion) to me within the next three days. I didn’t accept two of them. One because it was the evening after the meeting with my behavior specialist and a relatively new staff would be orienting her colleague. The other, I never said I wasn’t accepting but I was in a lot of distress and somehow my assigned staff made up that it was because of the new one.

The third one, I accepted without protest for my morning routine even though I later found out staff are supposedly first oriented to an activity. The staff being oriented kept asking me whether I’d explain things to her if she forgot. Well, actually, no, since I’m pretty easily overloaded by lots of questions. “She does pay attention, don’t worry,” the regular staff told me. Well, I do worry.

Unfortunately, I got a lot of negativity in my records for my behavior and yet there wasn’t the slightest acknowledgement of the fact that I’d accepted the third new staff without protest. That feels intensely unfair to me.

If we were having coffee, I’d share that the support coordinator did, for some reason probably only he knows, decide the new “regular temp workers” can’t be assigned to me yet even though by the behavior specialist’s rules, I’ve had my chance with all three. I am grateful for this, although I do understand I’ll need to accept them soon enough. That, hopefully, will go okay.

If we were having coffee, lastly I’d share that I’ve been writing up positives and negatives of the day each day for a few weeks now. Looking over these, it shows that I do appreciate small joys.

For example, there’s a new sensory room on the other side of the home and I’ve been eager to use it. I’ve also donated some stuffed animals and cushions to it.