#WeekendCoffeeShare (July 6, 2024)

Posted on by Astrid

Hi everyone. Today, I’m joining #WeekendCoffeeShare. As I start typing my post, I’ve just had dinner, but I probably won’t be finished with my post until after my evening coffee, as I’ll take a break from writing for my evening activity time slot. In case I am able to offer you a virtual coffee – which I will anyway, since it’s virtual -, I will offer you a stroopwafel biscuit with it too. I bought those at the supermarket this afternoon, because the staff ordering groceries this week either forgot to order large cookies for the weekend or thought they’re bad for our health. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, first I’d moan about the weather. It’s been rainy and chilly most of the week with daytime temperatures barely reaching 20°C. On Wednesday, the daytime high in fact was as low as 16°C.

If we were having coffee, next I’d share that I tore my Apple Watch wristband in two last week. That is, I pulled a tear into it when putting it on once, then when trying to put it on once more thinking I could still use another hole, I tore the entire thing in two, thereby dropping my Apple Watch. Thankfully, it didn’t break, but I couldn’t use it for a couple of days because of having no wristband. I mean, the wristband that broke wasn’t the original one, but somehow I must’ve discarded part of the original, since I could only find half of it.

I initially tried to order a new wristband and screen protector online, but the Apple Store would only let me pay by credit card and, though I did manage to order a screen protector off Bol.com, it was delivered to my in-laws’ house and hadn’t been delivered there yet by the time my mother-in-law visited me on Tuesday. I finally decided to just give it a try and order a wristband at another store and have it delivered to the care home. Like I’ve said a few times, the care home does have its own postal code, but I was originally instructed to address mail to the main building and add my home as second address line. Bol.com won’t accept second address lines and so I always used to have them deliver to my in-laws. Not anymore, since the wristband, addressed to the care home, arrived promptly and so did the screen protector I ordered that evening. Now I’ll have two screen protectors once my spouse brings the one that’s lying around at my in-laws’, but who cares? I have a working Apple Watch at last!

If we were having coffee, I’d tell you that the fact that it was raining plus the fact that I didn’t have my Apple Watch meant I didn’t walk nearly as much over the past week as I usually do. On Monday, I got pretty frustrated, because a temp worker happened to be assigned my two-hour activity time slot three times this week. Granted, he’s a regular temp worker here, but I had not yet trusted him enough to do anything other than play games and go for medium-long walks. On Monday I was anticipating two hours of dice games because of the weather, but thankfully it stopped raining eventually and we could go for a short walk.

Then on Tuesday, he told one of my most trusted staff that he’d love to work with clay with me. On Monday, the way he’d suggested we work with clay, it sounded as though he was just rattling off my activity list and I don’t do clay with staff I don’t trust to show at least some interest in it. I mean, they don’t need to know anything about polymer clay or even crafts in general, but if they’re the type to just sit around playing on their phone, a complex activity like polymer clay isn’t for them and me to work on together.

So on Wednesday, I decided to take the plunge and make a unicorn with him. At first, I used Cernit, which was way too soft, so I eventually gave up and chose Fimo. He asked to take the finished unicorn home with him to show his children, which I was happy to allow him to after I’d taken a picture, since I have many unicorns anyway.

Polymer Clay Unicorn

If we were having coffee, I’d tell you I started tapering one of my medications yesterday. It’s not the medication I originally wanted to taper, which was my antipsychotic, aripiprazole (Abilify). Instead, the intellectual disability physician suggested I discontinue my morning dose of topiramate (Topamax), which was supposed to help against nightmares and flashbacks. So far, I’m not noticing any difference good or bad, but it’s still early days of course.

If we were having coffee, lastly I’d tell you all to come to my home tomorrow. No, not really, but we will have a barbecue here. The parents of one of my fellow clients organize it, so I decided to buy them some chocolate as a thank-you gift.

Gratitude List (June 30, 2024) #TToT

Posted on by Astrid

Hi everyone. Today, I’m doing a gratitude post. As usual, I’m linking it up with Ten Things of Thankful. I’m not in a good mood, but, as I usually say, that’s the best time to do gratitude posts, as it usually surprises me with how many things I can come up. Let’s go!

1. I am grateful for the weather. On Tuesday, Wednesday and Thursday, it was a little hot for my liking, but the temperatures setteld down eventually and today the daytime high was 23°C.

2. I am grateful I tolerate the heat pretty well. On those hotter days, when the daytime high was 30°C, everyone was complaining about being hot, but I handled it okay.

3. I am grateful the institution “townhouse” was finally opened last Tuesday. If I’m correct, construction finished over a year ago and I was half-joking that they’d built the thing without realizing budget cuts would mean there was no use for it. It will be used for leisure activities. I do wonder what will happen to the building these activities used to take place in, since that building too had extensive roof work done recently so I’m hoping they won’t just let that building rot.

4. I am grateful for cheesecake. I made it as a birthday treat for the entire home (both sides, so 20 clients plus staff) on Thursday. The staff I made it with, had never made a cake or pie before, but it was a definite success.

5. I am also grateful my order for buns at the local bakery went well. I was going to treat the entire home to hamburgers, but when I tried to order the buns online to be collected on Thursday, something on the payment website caused me to go paranoid and I canceled. My spouse calmed me down and I retried and was successful this time.

6. I am grateful the hamburgers were delicious! I had two of them.

7. Speaking of my birthday, I am grateful many of my fellow clients came by my room in the morning to wish me a happy birthday and to sing for me.

8. I am grateful for two cards from a former fellow client from the intensive support home. I by chance walked by there today and she called out to me and went inside to fetch the cards.

9. I am grateful for the gift voucher for one of my favorite clay stores I got from my sister. I am full of ideas of what to buy with it.

10. I am grateful for the music pillow I got from my spouse as a birthday present yesterday. It is connected to my iPhone via Bluetooth. After a bit of trial and error figuring out how it works, I slept like a log last night listening to one of my favorite calming music albums on Spotify.

What are you grateful for?

A Birthday Visit From My Sister and Her Family

Posted on by Astrid

Hi everyone. It’s really been forever since I last touched the blog. I won’t even promise I’ll try to make a habit out of posting more regularly, as I just don’t know when the motivation and inspiration strike again.

I originally wanted to link this post up to Leigha’s Sunny Sunday, then realized my post, though not overtly negative, wasn’t specifically positive either. I could say that yesterday was a literal sunny Sunday though, with lots of sunshine and daytime temps of 25°C. We’re supposed to get sunny weather at least up till this Thursday. I actually like it, but some people are already complaining that it’s too hot. Then last week they were complaining that we didn’t get a proper summer, as it was raining and the temperature usually didn’t get above 18°C.

Yesterday, my sister and her family (my brother-in-law and two nieces) came by for an early visit for my birthday. They arrived here shortly after 9AM, because they had wanted to visit the petting farm here on institution grounds and, according to the website, its opening hours were 9AM-10AM. When we arrived, we saw that it wouldn’t close till 11AM. Its size was a little disappointing to my sister and my nieces (particularly the older one) were tired so it was hard to keep their attention.

We also took a walk on grounds, during which my older niece went on the swings. I tried to push her, but just as my sister was about to take a picture, she jumped off. Both of my nieces also had a turn playing the outdoors xylophone. At one point, my youngest niece, who is two, played “Jingle Bells”. Couldn’t have been farther away from Christmas, but who cares?

The family gave me two unicorn-themed presents: a unicorn bag filled with shower products and a My Little Pony Unicorn which supposedly has candy-scented hair. I probably looked a bit disappointed when I opened the gifts and to be honest I was, but when I talked to my spouse later on I realized from my nieces’ perspectives these are really well thought out gifts. My sister also promised me a gift card for one of my favorite claying supplies stores, which will be really very much appreciated.

We had lunch in my room and backyard. I had ordered poppy seed and sesame seed buns, as well as muesli rolls, from the local bakery. These were delicious!

The family left at around 1PM. It was a good visit overall, although looking back I’m glad I didn’t have my spouse over as well, as that would’ve been too tiring.

#WeekendCoffeeShare (May 18, 2024)

Posted on by Astrid

Hi everyone. How are you doing? I’m joining #WeekendCoffeeShare again. It’s nearly 9PM Saturday, so I’ve long had my last cup of coffee for the day. If you’d like, I can offer you a cup of green tea, a glass of soda or some water though. 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 quite good with daytime temps most days around 22°C, sometimes higher. On Thursday, we did get a thunderstorm, which scares me.

If we were having coffee, I’d share that, as a result, I had no trouble meeting my movement goal on my Apple Watch each day. I went for walks each day. On Thursday, before the thunderstorm, I also actually rode the side-by-side bike for a little in the morning and then we cycled to Colmschate, a neighborhood of Deventer, the nearest city, in the afternoon. In total, I did 25km of cycling according to my Apple Watch. I reached double my movement goal that day.

If we were having coffee, next I’d say that, generally, Thursday was my best day of the week. I finally worked on a polymer clay project once again. The new student staff was being introduced to me so I decided to show her how I make a unicorn. I got distracted by the thunderstorm a lot, so the unicorn didn’t turn out as great as I’d hoped, but oh well.

If we were having coffee, I’d tell you that the rest of the week was a bit challenging. I’ve been struggling with attachment issues lately. I keep clinging to my “favorites” among the staff. I’ve decided I will discuss this with the behavior specialist when I’m having en appt with her and my mother-in-law on Tuesday, as it really needs to stop for my and the staff’s sake. I mean, I’m allowed to have preferences re staff I get along with, but my anxiety around them abandoning me and the resulting distress isn’t healthy and besides, it might just lead to that exact thing if they feel I’m too clingy.

If we were having coffee, finally I’d share that my spouse and I were trying to figure out ways for seeing each other over the weekend, since due to Pentecost all shops and lunchrooms are closed on Sunday and Monday. I finally came up with the idea of traveling to our house by ParaTransit on Monday. I haven’t been there since Christmas. It should really be cool.

#WeekendCoffeeShare (May 11, 2024)

Posted on by Astrid

Hi everyone. Today I’m joining #WeekendCoffeeShare. It’s been a long week, honestly, so time for a cup of coffee, green tea or a smoothie. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s been quite warm and sunny most days, with daytime highs around 20°C. Tomorrow, the temperature is even supposed to reach 25°C. The mornings have been cooler though, as it’s not yet July, obviously. Which makes me think, with temperatures like this in May, will we get a soaring hot summer again? Most likely. I love warm weather, but it’s not like I want summertime temps over 35°C.

If we were having coffee, I’d tell you I’ve been walking a fair bit over the past week. I also rode the side-by-side bike yesterday. We finally figured out how to make it so that I can actually push the pedals properly rather than just moving along with the person who’s on the steering side of the bike.

If we were having coffee, I would tell you that, on today’s morning walk, we came by the intensive support home and several clients were calling out to me. I decided to come over and join them in their backyard. Eventually, one of the staff who did work there when I still lived there, joined us and offered me a cup of coffee. I think that’s nice!

If we were having coffee, I’d share that, finally, it looks like my orthopedic shoes are actually good to wear. The last adjustment was to the front, which scratches the ground due to my ever-worsening drop foot, causing the shoe to need repairing almost on a weekly basis. Now, it’s not like it doesn’t still scratch the ground and get damaged, but not nearly as much as it used to. And the big positive: I can actually wear these shoes without getting blisters. Like, okay, that’s normal, but I only used to be able to wear my specific brand of walking shoes and I’d get blisters from everything else, including every pair of orthopedic shoes I’ve tried before. I have actually been wearing these shoes most of the day for the past few days without a problem.

If we were having coffee, I’d report that, speaking of my drop foot, the physical therapist has been here. We went for a 20-minute walk, during which I didn’t walk with a drop foot as much as before, thankfully. It hasn’t had me convinced that my mobility isn’t worsening, but at least it isn’t as bad as I’d feared. I mean, it could just be normal aging with mild cerebral palsy.

If we were having coffee, I would share that I bought yet another pair of new headphones. Originally, I wasn’t intending on giving up on my AirPods, but because they keep losing connectivity to my computer, I needed headphones that come with a wired option. Well, guess what? The wired option for the JBL Tune 770NC headphones isn’t all that awesome, but the headphones don’t lose connection to my computer when connected via Bluetooth. Besides, it can be connected to both my iPhone and computer at the same time. How I wish I’d known about these before buying the AirPods, that were literally three times the price of these headphones.

If we were having coffee, I’d share that I also finally replaced my desk chair. I got a gaming chair. That’s the reason I have been wearing my orthopedic shoes all day: the chair is too high for me to sit on without shoes on. Other than that though, it’s much better than my previous chair.

I also ordered a table and two chairs for in my little backyard. These weren’t in stock at the store I went to, so I’ll have to come back to collect them. While at that store, I saw a really cute unicorn soft toy and just had to get it.

If we were having coffee, lastly I’d admit that I have been struggling with my mental health again and, as a result, haven’t been too inspired in the creative department recently. I do really hope to get back into the groove soon. I did, last week, buy some kitchen tools, like measuring spoons and a sugar/flour sieve. I’ve only used the measuring spoons for smoothie making so far, but that’s a start at least.

Gratitude List (April 26, 2024) #TToT

Posted on by Astrid

Hi everyone. How have you been? I’m participating in Ten Things of Thankful with a gratitude post once again. It’s been a while. I however have quite a few thankfuls to share, I think, so let’s go.

1. I’m grateful for homemade pizza. My spouse, mother-in-law and I made it together at my in-laws’ house (my father-in-law wasn’t there) last Saturday after the CP conference.

2. I’m grateful for a side-by-side bike ride on Sunday. I was assigned an extremely tall staff member for my one-on-one and, for those not aware, I am short myself. This makes walking with him quite a challenge, as we haven’t yet figured out a way for him to guide me that doesn’t cause me pain. However, I came up with the idea of biking instead.

3. I am grateful for the fact that my attempt at making overnight oats on Monday turned out to be a success! Last time I made them, I added way too much milk.

4. I am grateful because, on Tuesday, I was able to cook köfte for my fellow residents and staff. It took me quite some time, but that’s not a problem.

5. I am grateful for French fries on Wednesday. Oh, I’m making more than half of this list about food, but okay.

6. I am grateful for an opportunity to go swimming yesterday. I had gone swimming twice last week, once with my own home’s residents and once with a small group. I hadn’t expected to be able to join the small group this week again and swimming for my home was canceled because most residents were on the annual trip. However, I was able to join the small group anyway.

7. I am grateful for a trip to the institution museum this afternoon. It’s a really small museum, but it was interesting to learn about the history of the institution. Plus, we got free mini pancakes! Oh wait, that’s another food-related thankful…

8. I’m grateful for a day without rain today. We had rain most of the week and, though I could go on walks everyday inbetween showers, I couldn’t go out nearly as much as I’d have liked. Today though was a rain-free day and we even had a bit of sunshine.

9. I am grateful for an appointment with the nurse practitioner who works at my local GP practice re my decreasing mobility. I’ll have a physical therapy appt soon too but I’d really like to know what’s causing my mobility impairment (CP or something else) and whether a decrease in mobility is to be expected or what can be done about it.

10. Last but not least, I am so grateful I seem to be slowly crawling out of the pit of depression I was in.

#WeekendCoffeeShare (April 13, 2024)

Posted on by Astrid

Hi everyone. How have you been? I’m joining #WeekendCoffeeShare today. I’m writing this post in the afternoon on Saturday, but might not finish it until the evening as I’ll try to fully enjoy my one-on-one support time while there’s staff I get along with well in the home today. It’s a little warm for coffee, so if you’d like a cup of that, fine by me, but I could also offer you orange and tangerine-flavored Dubbelfrisss. I also should still have a couple Mars ice cream bars in the freezer. Let’s have a drink or ice cream and let’s catch up.

If we were having coffee (as I always say), first, I’d talk about the weather. It’s been on the warm side for April here. Last week Saturday, the daytime temperature even rose to 25°C. Yesterday and today, we got daytime highs of 21 and 22°C respectively. The rest of this week, the temps have been lower and we did get some rain. Next week, we’re supposed to get daytime temps barely above 10°C, which I don’t like. However, that’s probably closer to normal.

If we were having coffee, next I’d tell you all that I’m still going strong keeping up with my physical activity by walking everyday. So far, I’ve closed all three of my activity rings on my Apple Watch each day since the beginning of the month (and possibly a few days at the end of March too. I’m aiming for a perfect month with respect to my movement ring at least, which I haven’t had since last September.

If we were having coffee, I’d share that I finally got the long-awaited orthopedic shoes. They fit well, but the brace that’s in them doesn’t effectively help my really bad drop foot and as a result, the left shoe got noticeably damaged after only two fifteen-minute walks.

If we were having coffee, I’d tell you that, last Sunday, my spouse and I together worked on a polymer clay project. I’d proposed we create a unicorn, but my spouse came up with the idea of crafting a triceratops (“unicorn dino” with three horns) instead. It was fun, but definitely an exercise in letting go of my need for control.

Polymer Clay Triceratops

If we were having coffee, I’d tell you that the rest of the week was quite hard. I’ve been struggling with feeling quite depressed lately. I have been feeling like my world is becoming smaller and smaller with all the things I cannot do. It’s been more so on my mind lately given that many of my fellow residents are going on the home’s yearly week-long sleepaway camp at the end of the month and it’s not even been asked to me directly whether I wanted to go too. Rather, I overheard the staff talking about the camp a few months back and mumbled about it not appealing to me and that’s the end of it. I’m supposed to stick to my day schedule, which currently consists mostly of walking around institution grounds and playing dice games. Some staff say I might be able to be in the communal room more, but to be honest I don’t care about being in the communal room just sitting around.

Yesterday, I tried making a cheesecake with my assigned staff in the communal room but got overloaded by one of the other clients (who will stay here during the camp as well). It led me to spiral into a massive emotional outburst. After all, now everyone tells me I’ll never have a better life anywhere anyway so I’d better accept the life I have now. Why didn’t anyone tell me this two years ago? The answer is simple: at least some of the people at the care facility in Raalte secretly wanted to get rid of me. This is intensely saddening to me.

If we were having coffee, I would end on a positive note though by saying that one of the staff who told me to accept my life yesterday, offered to take me on a short car trip to Deventer this afternoon. We had a cup of coffee (I decided to buy both of ours) and walked around the marketplace, where the staff bought me a stroopwafel and I bought a small serving of garlic-filled olives.

My Favorite Type of Weather

Posted on by Astrid
Daily writing prompt
What is your favorite type of weather?
View all responses

I am pretty sure I answered this question before when rambling on for one of Paula Light’s former #TGIF posts. At least, I did share that Erwin Kroll, the Netherlands’ most well-known meteorologist during the 1990s, said in an interview for the kids’ audio magazine I subscribed to at the time, that partly cloudy weather with a daytime temperature of 22°C was his favorite and I probably added that mine wouldn’t be far off. I’d prefer slightly warmer weather, but I don’t care for daytime highs in the high 20s, let alone 30s or above.

At night, I prefer a temperature below 10°C. Oh wait, I’m being a bit difficult, as with daytime highs in the 20s, you hardly ever get night-time lows below 10°C.

I used to hate rain with a passion, but now, though I don’t care for it, I will still go outside if it’s drizzling a little. I still can’t stand snow, sleet or hail.

As a side note, I had a discussion with one of my staff a few days back. He said he’d love for the daytime temperature to be 20°C now. I said me too, and we will more than likely get our way sooner rather than later given the speed of climate change, but this does mean summer highs will be in the 40s too. Be careful what you wish for…

Gratitude List (March 9, 2024) #TToT

Posted on by Astrid

Hi everyone. This past week has been tough. I was going to write an update only to realize there’s no #WeekendCoffeeShare this week. I could do one on my own, but that’d just leave room for endless negativity. Instead, for this reason, I’m going to turn things around and do a gratitude post. As usual, I’m joining Ten Things of Thankful. I’m going to cheat a little and do this gratitude list for the past ten days so that I can provide a little update anyway.

1. I’m grateful for the night nurse on duty during the night of February 29/March 1. Like I said on February 29, I was intensely triggered by my intake interview for therapy. Though I tried to calm myself down, it didn’t work and I ended up self-harming after my staff had left by throwing boiling hot water over my leg. Thanks to the night staff and particularly the night nurse, who cooled the wound under the shower for over half an hour, I am left with superficial second-degree burns. The wounds still cover most of the front side of my upper leg, but I realize things could’ve been a lot worse.

2. I am grateful my wounds are healing as well as can be expected. I’m getting them dressed once a day now, which is frustrating and sometimes very painful. I looked up my kind of burn (that’s how I found out there are two kinds of second-degree burns) and it usually heals within two weeks. Yay!

3. I am grateful for French fries on Sunday. As I couldn’t walk on Sunday (or most of this week, for that matter) because the band-aid that was on my leg would fall off if I did, I decided that my spouse shouldn’t come by for a visit. Instead, my staff took me to the institution cafeteria in a wheelchair to have fries and some snacks. They were delicious!

4. I am grateful for nice weather last week Sunday as well as over the past couple days. Last Sunday, the daytime temperature rose to 15°C. When having the fries I mentioned above, we sat in the cafeteria yard.

5. I am grateful I am feeling slightly better mentally. I definitely hit rock bottom on February 29 and from that place, you can only go up. I will have to see how things work out in the long run, as the behavior specialist is going to try to talk to the therapist I met on Feb 29 to see whether any changes to the plan need to be made. Though I’m ready to give it a try, particularly the thought of doing the therapy without the support of my staff, feels overwhelming.

6. I am grateful that my support coordinator listened to me when discussing the outcome of the monthly team meeting with me. The team meeting was on Monday and, though I had already asked that some things would be discussed, such as my day schedule, my self-harm made things a priority. The day schedule isn’t changing, as I expected, but I honestly don’t mind as much.

Initially, in the team meeting, the staff had agreed to stick with announcing staff switches half an hour in advance. I was really disappointed. Though I understand the staff don’t want to designate a one-on-one shift, I feel it will help me immensely if I know more in advance who’s going to support me for my activity slots. I am grateful my support coordinator reluctantly agreed to this.

7. I am grateful my support coordinator reassured me that she and the behavior specialist at least aren’t planning on asking for less one-on-one for me anytime soon. Of course, they aren’t the ones making those decisions, but then again neither is the therapist I met last week.

8. I am grateful I did manage a few crafty endeavors over the past week. Not as many as I’d hoped, but I did craft yet another polymer clay unicorn, as well as finally making the crocodile I’d promised one of the male staff here. He actually helped me make it. It’s maybe a little too cute, but oh well.

Polymer Clay Crocodile

9. I am grateful my spouse came by for a visit today. We sat in my room talking, playing a card game and such, as I still didn’t feel comfortable going out.

10. I am grateful for the few short (as in, fifteen minutes tops) walks I did manage over the past few days. It’s been a pain f(sometimes literally) inding the right band-aids and other things to go over the wound. Let’s hope Dr. Google is right and my wound heals within the expected timeframe of two weeks.

#WeekendCoffeeShare (February 24, 2024)

Posted on by Astrid

Hi everyone. I’m joining in with #WeekendCoffeeShare again this week. It’s the last Saturday of February and I honestly can’t wait for spring. How have you been? I’ve had my last cup of coffee for the day already, but I can still offer you something to drink if you’d like. Let’s catch up.

If we were having coffee, first I’d talk about the weather, as usual. I’m really disappointed in it this week. It’s been raining a lot and it’s been quite cold. On Thursday, another storm even raged by and management decided we weren’t allowed to go outside. This was in light of the situation in which a staff member died last December from being hit by a falling tree while going out in a storm. I want sunshine, for goodness’ sake!

If we were having coffee, then I’d tell you that obviously I haven’t been all that active lately. I think I only met my movement goal on my Apple Watch three times tops this week.

I might go swimming soon though. My assigned staff told me they found a spot for me to go into the pool on Thursdays. However, I’d need a staff to actually accompany me in the water, because I won’t be able to follow instructions when shouted from the side and there will be other clients in the pool too. If there’s no staff available who’s willing to come into the water with me, he said we could do fitness instead. There’s some gym equipment on grounds here, but there won’t be an instructor there. I’m fine with this, since I know how to work most equipment or my staff will be able to figure it out.

If we were having coffee, I’d share that I did have quite a productive week in the crafty department though. I made a polymer clay unicorn (yes, another one) on Tuesday. I didn’t do it fully independently, but that’s okay. I did add wings to this one, as well as Hotfix stones below each wing.

I also made a bird’s nest out of polymer clay on Thursday. That one is still waiting for more projects to join it so that I have more things to put into the oven together.

If we were having coffee, lastly I’d tell you that my support coordinator came back to me on Monday after talking to the behavior specialist. My emotional functioning won’t be re-assessed until June at the earliest and my day schedule won’t change until after the summer at the earliest. At the end of our discussion, she gave in on the day schedule and said she’d discuss it in the team meeting. I honestly don’t really care about the day schedule as much. I mean, it’s not perfect, but no day schedule is going to be perfect. What I do care about, is to lessen the chaos of my care. I mean, I know it’s better than it used to be at the intensive support home and I probably sound like a Very Hungry Caterpillar if I request more accommodations. I said as much to my support coordinator, but she tried to validate me by saying my attitude stems from my trauma.

The fact that there’s no designated one-on-one shift, however, has a lot of drawbacks and not just the fact that I get confused about who’s going to show up each support moment. It’s frustrating also because only the staff who works until handover, writes the day’s logs and those usually aren’t the staff members supporting me. I do, for this reason, notice a lot of irrelevant logging and, last Thursday, when I had a near-perfect day, there weren’t any notes at all. I think my staff probably hate me comparing my situation to the one in Raalte, but there, my designated one-on-one had fifteen minutes at the start of their shift to read the previous days’ log notes and fifteen minutes at the end to write up theirs. This meant I didn’t have to explain everything half a dozen times, like I do now. I also feel like having a designated shift would mean I could be much more clear on what I am going to do, lessening the mere talking and increasing the actual activity. I see why, if I keep rambling to a staff member for all of my activity time slot, they won’t want to spend another time slot with me, but I don’t like to spend all of my activity time rambling about the same issues either. The only reason I do is because I can’t count on getting it across.