“You’ll See Someone At Some Point.”: Autism and Day Schedules

I have been thinking a lot about my day schedule lately. It’s okay. Not good. Far from perfect. My assigned staff gets slightly annoyed when I point out it’s far from perfect. She thinks – and I honestly can’t blame her – that it wouldn’t be perfect until I got one-on-one 24/7. I at one point actually told my staff so (well, not exactly 24/7) – which is why I can’t blame them for thinking this. It’s not true though. I need time to sleep, to blog, to read and just to be by myself. I would indeed go crazy if I had someone in my room around the clock.

In fact, when I was talking to my home’s behavior specialist on Tuesday, I told her I could do with longer periods of alone time than the 30 minutes at a time I have now. That is, if staff stuck to the, say, 45 minutes we agreed upon. In fact, I’d love that, as 30 minutes isn’t enough to do any sort of longer meaningful activity alone, like blogging. By extending my alone times from 30 to 45 minutes (or occasionally longer), I could then lessen the number of them and by extension have longer times of supported activity, so that I could actually do something like do a bigger clay project.

This, obviously, isn’t possible at this home. Not only because staff need to leave my room at least every hour for one thing or another, but also because they need to switch as often too, sometimes without warning.

This is where I get really annoyed. I mean, I know that most pro-neurodiversity autistics despise day schedules, but mostly (I assume) because they are imposed upon them in behavioral settings etc. I actually thrive on a day schedule, but it has to be followed. I personally don’t mind Colette de Bruin’s system of What, Where, When, With Whom and What after that, as long as I have a say in the contents of my day schedule.

In my case, the “Where” is usually clear, although it does happen sometimes that I get taken into the communal room without having been given a choice, because “it’s fun”. The “When”, not so much. I do have times on my day schedule, but these are “approximates”. A few days ago, when we didn’t have dinner until six o’clock, whereas the regular time is five, this “approximate” was used against me. I don’t call that approximate.

The “With Whom” isn’t clear at all. Staff don’t tell us clients who will be working the next day or even late shift when it’s still morning, because someone might get sick. This isn’t the worst though: there are four staff in the home for each shift and they switch about randomly. I call that chaos for chaos’ sake.

Today, I called out a staff on the website’s info about the home, which claims the staff know autism. “We do know autism,” she said. Well, if she did, she wouldn’t be constantly telling me: “You’ll see someone at some point,” when leaving my room for my “time by myself”.

Gratitude List (January 7, 2023) #TToT

Hi everyone. I have been struggling a lot lately. I am not the only one in my home – last night, everyone was irritable at least. This among other things caused me a lot of anxiety. To counter these feelings, I’m doing a gratitude list. As usual, I’m joining in with Ten Things of Thankful. Here goes.

1. I am grateful I haven’t caught a cold or the flu (or COVID!) so far. Everyone around me seems to have come down with something. Though cases of coronavirus are on the rise generally too, it seems to be mostly the common cold or flu around here, thankfully.

2. I am grateful I am currently on track with the Bible-in-a-year plan I’m following. Okay, it’s been only a week so far and, though I hope I’ll continue to follow through with it for the entire year, I am not too confident in myself about staying on track. At least I don’t plan on quitting.

3. I am grateful for a visit from my mother-in-law last Tuesday. She initially didn’t plan on visiting this week but thankfully changed her mind because I was already struggling a bit.

4. I am grateful for licorice. I bought some when at the supermarket with my mother-in-law and thankfully put it in my basket in the storage room so that I cannot reach it by myself. For this reason, I still have some left.

5. I am grateful for French fries yesterday. A fellow resident had his birthday, so the staff went out to get us fries and a snack.

6. I am grateful my UTI has gone. Not that I notice any difference in my body’s signals – I wasn’t picking up that I had it and, when I thought I had figured out what its symptoms were, I figured it still wasn’t over. However, I’m glad it’s cleared.

7. I am grateful I was able to teach several staff how to play the card game mau-mau. It was fun.

8. I am grateful for relatively mild weather.

9. I am grateful that, when everyone was irritable and several of my fellow clients were in crisis at night yesterday, the support coordinator stayed in the home for the night. I am grateful that I slept okay’ish in spite of several clients being out of control in the middle of the night.

10. I am grateful a nice staff was my one-on-one staff this evening. I am also grateful another nice staff popped in to say hi every now and again. Lastly, I am grateful that, this evening, my day schedule wasn’t disrupted.

What are you grateful for?

Solo: Making the Most of My Alone Time

Today’s prompt for #JusJoJan is “solo”. It has many meanings, but the overarching one is “alone”. For this reason, I thought I’d use this as an opportunity to write about ways to make the most out of my alone time.

You see, I don’t really do well with alone time. It makes me anxious. At the same time, I need alone time. It helps me recharge. How can these two coexist, you might wonder. Honestly, I’m not quite sure.

However, the more important question is, how can I make sure the recharging effect gets the upper hand rather than my anxiety? The key to this is making the most out of my time alone.

In my old day schedule, I had random slots of alone time that could last anywhere between 15 and 60 minutes, sometimes longer if I didn’t come out of my room to alert the staff. This caused intense anxiety, because I never knew when I’d have time alone and, when I did, how long it’d last. This meant I didn’t know what activities to do during my alone time.

Now though, I usually have time slots of 30 to occasionally 45 minutes alone. In all honesty, I think the 30-minute time slots could be lengthened to 45 minutes if they could be decreased in number and by extension my time slots of activity lengthened too. This isn’t likely possible at my current care home though.

During the time of my old day schedule, I used to feel stressed when alone and as a result use up the time by wandering around my apartment. Now I occasionally still do this, but I try to put each moment of alone time to good use. For example, Bible study and blogging are things I can’t do when a staff person is in the room. I do these when I have alone time, but sometimes I struggle to finish them off during my 30-minute solo time slots. At the same time, I struggle to find meaningful activities that I can do within my 60-minute time slots (which are usually cut short) of one-to-one support. Part of the reason is my need to get into a routine – for example, of gathering my polymer clay supplies. Part of it is the fact that some staff start out by proposing a certain activity, which makes it hard for me to switch to wanting something else. And part of it is probably my mindset too, in that I get overwhelmed with not knowing how long an activity will take and thinking I “only” have this amount of time. This applies to alone time too.

I often say that, in an ideal world, I’d have one-on-one all the time. This isn’t true. In an ideal world, I’d have good chunks of alone time with staff only popping in once every 45 minutes (because otherwise I’d lose track of time), so essentially no extra care then, during later evenings and part of the weekend. I’d also have good chunks of supported activity during the day. Oh wait, that’s pretty much how I had it in Raalte and I was going to let go of comparisons with old homes. No, wait again, my day schedule back there wasn’t ideal either. But it allowed for longer chunks of activity time during weekdays and that’s really what I dream of.

2022: The Year in Review

Hi everyone. It’s the last day of the year, so in keeping with my tradition, I thought I’d do a review of the past year.

I started 2022 by reviewing the forms for my extra care funding application – my extra care had just been re-approved for two years at the end of 2021 – with the behavior specialist. “Extra care” is what I usually refer to as “one-on-one” here, but I’m told by several staff that it’s not technically one-on-one if it’s not full-time one-on-one. Whether that’s true, I don’t know. I made some suggestions for when the application had to be submitted again in two years’ time. With how much has changed over 2022, I doubt any of it will be relevant anymore.

I also started the year with a healthier food plan and by seeing a dietitian. Over the course of the next nine months, I lost about 4-5kg and, like I had hoped, got to a relatively stress-free food plan. I did, towards late summer, start overexercising a little, but I attribute that to the newness of my Apple Watch.

By April, things started to shift a little, as I officially voiced my wish to explore the possibility of my moving to the main institution or another care agency with an institutional setting. The behavior specialist and I created a housing profile with my needs and wants on it and the behavior specialist gave it to the care consultant.

As it turned out, he only got applications sent out to the main institution and to one other agency, an agency in elder care. The reason was the fact that said agency operates an assisted living facility for blind or visually impaired older adults. With the fact that my long-term care funding is blindness-based, it makes some sense, but the place isn’t suitable at all.

I did get to meet the behavior specialist and two support coordinators for the main institution. As it turned out, they did find a place they considered suitable, ie. my current care home. I moved in early October to what from the care agency’s website looked like my dream home. It quickly turned into a nightmare though.

Thankfully, during the timeframe of late November till late December, some things got settled. I’m still finding I feel very easily frustrated with some things in my home and I’m swinging between letting them go (which is very hard for me) and mentioning them (which may come across as me sweating the small stuff).

For one thing, I lost another 6kg during these three months that I’ve now been here. I know I am still overweight by a few kilograms, so in this sense it’s okay, but it does create some difficulties relating to my disordered eating habits. I’d really like to get in touch with the dietitian again.

In other health-related news, I got some med tweaks in 2022. First, I started pregabalin I think in February. Then, in April, I took my first step lowering my antipsychotic dosage.

I also found out during the summer that my kidney function was mildly decreased. I had it retested about two weeks ago and, though it decreased a tiny bit further, this could be because I have a UTI.

Let me also share about my creative endeavors of the year. I did a ton of polymer clay crafting and really loved it. When I moved to my current care home, I for a while had to let go of this hobby, but now I’m trying to slowly reinvent my creative self.

Lastly, faith-wise, I remain a struggling new believer. I am really hoping and praying that God will lead me further on the right path towards Him in 2023.

The Wednesday HodgePodge (December 28, 2022)

Hi everyone. It’s the last Wednesday of 2022, so I’m joining Joyce for the Wednesday HodgePodge. Here goes.

1. Did you set any goals for the new year this time last year? Did you meet them or miss the mark? Tell us more if you’re comfortable sharing.
I don’t set goals. Instead, I call them hopes. That removes the pressure, but they’re pretty much the same. I shared my hopes for 2022 on January 1. For the most part, I sort of reached them early on but completely started falling off course after the move to my current care home. I’m slowly getting back on track.

2. What are three words that might describe the kind of person you were this past year or describe in some way how your life looked?
Transition, stress, creativity.

3. What’s something new you ate, saw, heard, or experienced in 2022? What did you think?
This year was a massively transitional year, since I experienced the move to what I thought would be my dream care home but initially turned into a nightmare. It’s slowly starting to get better though. As a result, I experienced many new things. A tiny one is the fact that I ate mash for the first time in a looong while.

4. Oxford Dictionary has announced it’s word of the year for 2022, and it’s this-goblin mode. Huh? Have you ever heard this phrase? Used this phrase?
No, never heard of it until now. Consequently, I have no idea what it means and honestly don’t know whether I want to know. Oh wait, no, I don’t want to find out, as I just saw that Joyce had the definition written out and I skipped over it. Or maybe now I do want to find out.

If you were in charge, what word would you declare word of the year for 2022?
Russification, if that’s a word in English too (it is in Dutch). We need to be aware of what’s happening in Ukraine and especially the parts of it completely under Russian control, like Mariupol.

5. Any special plans for an end of year celebration in your house or town? The travel channel says the world’s best New Year’s Eve celebrations will happen in Copacabana Beach-Rio de Janeiro, the Orlando theme parks in Florida, London, Sydney, New York’s Time Square, Edinburgh Scotland, and Paris. If you could attend any one of these which would you choose? Tell us why?
I will be going to Lobith for New Year’s . My husband just ordered a waffle maker online so that we can make waffles then. He also said he bought Airfryer snacks.

If I had to choose any of these destinations to visit during New Year’s, it’d be Sydney because it’s summer there right now. Then again, I don’t have any desire to visit there otherwise. I would like to go to Edinburgh someday, but not in winter.

6. Insert your own random thought here.
I’m probably going to end the year on a positive note, as my support coordinator returned from her vacation yesterday and did part of my one-on-one this evening. That’s not the positive news. The positive news is the fact that she said my day schedule is good as it is.

Some Glimmers of Hope

Hi everyone. It’s once again been a week and a half since I last posted. This week and a half hasn’t been boring at all. In fact, it’s been filled with events that triggered all kinds of emotions in me.

Last week Saturday and again on Monday, I had some very difficult conversations with my assigned staff. She turned out not to mean things too badly, but just got very frustrated with my trouble understanding non-literal speech. We also once again ran in circles about this home being very different from the home I come from and my being used to the old home and never getting it like that here. I know, I don’t expect things to go precisely the same as they went there, but there’s something between the way I was treated at my old home and the very harsh way I’m treated here.

These conversations got me so frustrated that I started thinking I may need to get an independent client supporter to help me find another home. After all, moving to another home within my current care agency, isn’t an option.

Then on Wednesday, a staff told me about her plans for getting day activities rolled out at this home. I’m not sure I can participate in all of them, but some I can take part in. This staff also assured me that my assigned staff is completely on my side.

This also became clear when I had the meeting with the mediator, my assigned staff, the behavior specialist and my mother-in-law yesterday. My assigned staff admitted that some (most, in my experience) of her coworkers treat me just like they treat everyone else at this home. Apparently the harsh approach is what the others need, but I don’t (unless I for instance insult a staff member, which only happens during a severe meltdown, 99% of which can be prevented with the right support). We agreed that my signaling plan (for preventing and averting crises) will be revised, but the behavior specialist assured me that for the most part it can stay the same. After all, she said I haven’t become a different person since moving here. That felt validating.

I positively told the people attending that, since implementing my new day schedule, things have significantly improved. I also told them I realized this may be all I can expect of the staff, so I am (trying to be) all happy when it goes smoothly. However, when it doesn’t go smoothly – for example, when the staff are frequently late for my assigned support times or leave me alone beyond my assigned alone times more than occasionally -, I’m not happy. It gets worse when the staff justify their tardiness or leaving me alone beyond my assigned alone times with some comment about my not having (full-time) one-on-one. Their reasoning is that, since my one-on-one isn’t full-time, I essentially don’t have one-on-one at all and can just expect staff to pop in whenever they please. Their terminology is a bit screwed (I think I explained it in a previous post) and it irks me beyond belief. I know I don’t have full-time one-on-one and I don’t expect it, but I do have the day schedule for a reason.

Both the behavior specialist and my assigned staff validated my need for the day schedule and for staff to stick to it. I said I understand that a severely challenging situation among my fellow clients could be a factor preventing this, but the behavior specialist said this shouldn’t happen more than a few times a week. Currently, it’s usually at least once a day (and I obviously don’t mean the times my staff is running like five to ten minutes late for my support). My assigned staff actually went so far as to say the extra staff is there primarily for me. She is going to clarify this and some other things in a basic info sheet on me that all staff can read when starting their shift with me.

Altogether, the meeting gave me some glimmers of hope. It remains to be seen whether the staff actually do something with what came out of it. I do still have my worries about my support coordinator overriding all this once she returns from her time off. Then again, I am pretty sure that, if the behavior specialist actually means what she said, my support coordinator can’t really do that.

Things That Made Me Smile (December 12, 2022) #WeeklySmile

Hi everyone. I’m joining the Weekly Smile today. Even though I’m trying not to get my hopes up too much about the new day schedule, this also means I enjoy every moment of it.

For those not aware, on Saturday, I started with a new day schedule that is mostly time-organized and allows for me to choose my activities rather than it being activity-based. It is of course still in its test phase and it may actually be torn apart (figureatively speaking) by my support coordinator once she returns from her time off after Christmas. That’s why I’m not getting my hopes up, but also why I enjoy every moment.

The thing that made me smile most about the new day schedule is that it allows for time for me to work with polymer clay with my one-on-one again.

The most smile-worthy event of the weekend is, of course, the creation of my very first unicorn in the new care home! It isn’t my best unicorn ever, but I completely loved crafting it. The staff I created it with, suggested we place it near the Christmas tree, as its mane and tail are in red and green. My fellow clients and staff love it.

In addition to the unicorn, I crafted a koala and an apple out of polymer clay. I also attempted to create a macaron, but decided not to bake that one, as it wasn’t a success.

One of my staff – a staff who can be a bit direct – did ask me how long it took me to craft the unicorn. I struggled not to see this as criticism, as it took me about ninety minutes total, over two sessions, including gathering my supplies and all. He did ask me whether I could craft a panda, as those are his favorite animals. I told him I’d make one for him and did so this evening. This was harder than I thought it’d be, mostly because the black Fimo I used for the panda’s black body parts kept leaving streaks on the white Premo I used for its white body parts. My staff tried to remove them with alcohol, but it remains to be seen how successful this was. Regardless, I enjoyed the process.

What made you smile recently?

TGIF: Walking and Crafting

Hi everyone on this third Friday of November. I’m joining Paula Light for TGIF. How is your day going? Mine’s almost over, as it is 9PM as I type this.

I had a pretty good day. Have had an okay week in general anyway. Finally got down to creating my first actual polymer clay piece here at the new care home, a flower. Creating this simple piece took me about 45 minutes yesterday, including gathering my supplies, watching the tutorial, conditioning the clay, etc. The piece nearly got ruined when the staff took it off the tile to transfer it to an oven-safe mat, but thankfully she was able to put it back together. I initially didn’t want to cure the clay because, once cured, if a piece is ugly beyond sanding/buffing, all you can do is throw it in the trash. However, after some thought, I decided I wanted something tangible to remember my first actual claying session in the new care home by.

As those who’ve seen my creations from back at the old care home, will know, this one can’t compare to those. However, I feel judging from the fact that I haven’t been actually working with clay in a long while, I did an okay job.

I also went on several walks this past week. Haven’t met my step goal, insofar as I have one – those who know the Apple Watch, know its movement goal is calorie-based, not step-based -, but I have been doing an okay job overall. My movement goal, by the way, is easy to reach. My exercise goal, not so much. My monthly goal for November on the Apple Watch is to reach my daily exercise goal 23 out of 30 days. I reached my monthly goals for September and October – different goals – with ease, but am struggling with this one, because walking and dancing are my only ways of exercising here now that I don’t have my elliptical anymore. I could cheat by starting some ball game workout when throwing a ball with my staff, but that’s not fair.

Overall, this week is going okay with respect to my care. A slightly modified version of the day schedule I mentioned last Saturday got shoved down my throat once again on Tuesday, but thankfully, most staff are willing to take it with a grain of salt (or a whole bucket of salt).

Unfortunately, the situation had to get worse over the weekend before it got slightly better and the slightly better (ie. an okay week this week) might just be chance. I won’t disclose details of the, in my opinion, unacceptable care I received over the weekend.

I talked to an independent mediator about my care situation today (this is not a secret, all staff know I did). I won’t disclose what exactly we discussed, but we’re hoping to resolve the difficult care situation as peacefully as possible.

Here’s hoping you’ll all have a good weekend.

#WeekendCoffeeShare (November 12, 2022)

Hi everyone. It’s once again been a while since I last wrote. Today, I’d like to write a post for #WeekendCoffeeShare. I drink more coffee here at the new care home than I used to and it’s not decaf in the evenings. That’s one thing I don’t mind, although I now realize the caffeine might be contributing to my poor sleep. Like I said a few times before, I’m struggling greatly otherwise too. Let me try to share a bit about this past week. Grab a cup of coffee, cappuccino (we have a milk frother here) or tea if you’d like one and let’s chat.

If we were having coffee, firstly I’d start out with the slightly positive: the weather. Although others – climate activists – would see this as a negative (and I understand why), I am so relieved we have relatively mild fall weather here. Daytime temperatures rose to a maximum of between 12 and 17°C over the past week and we didn’t get much rain.

If we were having coffee, then I’d share about the negatives, the list of which starts with my day schedule. I requested one because, otherwise, staff would give me one-on-one support whenever they so wished. However, as it turned out, the day schedule was so vague that staff could still interpret it however they wanted to.

For instance, some staff had gotten it in their heads that, between each activity, regardless of how long that activity took, they’d need to leave me alone for 30 minutes. I said sarcastically that I’d have to think of activities that lasted two hours then, but the last staff who openly told me this about the 30 minutes between each activity didn’t get my point and said an activity could take 30 minutes or whatever too. For clarity’s sake, I have unlearned to initiate activities that take longer than 30 minutes myself because I know staff will usually tell me they don’t have the time, even though I got 90 minutes of uninterrupted one-on-one from my old home’s staff each weekday morning and two hours each weekday afternoon.

Like you may guess, my day schedule is organized around activities, not timeframes. I understand this if you want to put into it specific activities such as “walking” and can’t be sure how long each walk will take. That’s why my old home had “supported activity” in my day schedule. However, it appears as though my staff here want to be able to decide on a daily basis how much one-on-one support to offer me and usually this is not dependent on my need for it, or even on my fellow residents’ daily care needs. Not that those should matter, since my one-on-one is *my* one-on-one, not my fellow residents’. However, it’s about 90% dependent on staff qualities: whether they smoke, whether they’d rather do stuff on their phone or chill out with coworkers than help clients, whether they can or want to set boundaries on my fellow residents’ demands, etc.

As a result of all this, I tore up my day schedule on Monday and life hasn’t been worse since.

If we were having coffee, lastly I’d share it’s my husband’s birthday today. He doesn’t celebrate it or so he told me, but he will be coming here for a visit tomorrow.

How have you been?

TGIF: Lonely in a Crowd

Today, Paula Light talks about loneliness in her TGIF post and I thought I’d follow suit. There is this weird feeling when you feel loneliest when surrounded by a roomful of people. I’ve been feeling this way lately.

It’s not as bad as it was during my high school years, when I felt isolated in the full cafeteria because I knew no-one wanted to talk to me. I mean, back then, especially in the first year, classmates were assigned to guide me through the building and I’d be sitting during lunch break with whoever was my guide for the day. It was very obvious that most if not all classmates didn’t want me there.

The situation is different now. My fellow residents definitely do seem to want me in the living room with them. Several ask when I’m coming to have coffee there again as opposed to in my room. Some specifically come out of their rooms to join me when they hear my voice. In short, it isn’t that I’m unwanted.

And in a sense, it isn’t that I can’t connect either, although that’s probably more where my loneliness is coming from. I struggle to strike up conversations with my fellow clients especially when more than one person is talking at the same time and even more so when the staff are having a separate conversation among themselves. I also get overloaded really easily, but don’t tend to notice until it’s too late. As a result, I struggle with a need for connection but also a need for a sensory-friendly environment and these often clash. Lately, I’ve chosen connection, but I fear this will lead my staff to decide I am ready for less one-on-one support. I don’t want to be seen as too demanding of attention, but when my needs clash, I really do need support to find the right balance.