Why Do I Need One-on-One Support? #31Days2021 #Blogtober21

Yay, it’s October and this means it’s time for Blogtober 2021. Last year, the prompts were based on song titles. This year, there are no prompts. However, Kate Motaung of Five Minute Friday also relaunched the 31-day writing challenge after a break last year and there are prompts for this year. The first prompt is “need”. We can do a five-minute freewrite, but I’m no good at sticking to five minutes or at not editing my writing.

Yesterday I had my care plan review. I was really concerned about my need for one-on-one support being reassessed later this year. Not that the care plan review would really matter for this or so I’m told, but now that we were all together (my home and day center staff, the behavior specialist and my mother-in-law), I wanted to raise the issue. It’s the behavior specialist’s job to write the reapplication paperwork and I questioned whether it sufficiently documented my need for one-on-one. To get things clear in my mind, I am going to write out why I need the support I need.

Firstly, I am blind and have a mild mobility impairment due to cerebral palsy. This, combined with my psychiatric illnesses, means I cannot move about outside the care home, or even outside of my room, independently much at all. This means that the staff need to be alerted when I leave my room looking for them, so that they can come out looking for me.

I am autistic. In my case, I get severely overloaded having to function in a group setting, such as at the day center. Even with noise-canceling headphones on, I still get distracted from trying to do things on my phone while there. Besides, if I do have functioning headphones, they will block out so much noise that I’m essentially cut off from my surroundings and can’t be alerted should something happen. This creates intense anxiety.

This anxiety also leads me to be unable to function on my own for long periods of time. I can, if I’m doing well, be left on my own in my room for up to about 30 minutes at a time. It doesn’t help that I know rationally that someone might be in the next room, because emotionally, if they’re out of earshot, they might as well be on the North Pole.

Autism also means I tend to fixate on routines. In my case, I tend to hyperfocus on the times my staff are going to leave me alone and this creates even more anxiety even when they’re still present. For this reason, staff need not stick to rigid rules of what time exactly they’re going to leave me, but rather to the order of activities.

If I’m left alone for prolonged periods of time, I can often feel incredibly unsafe and start to ruminate, which can easily escalate into self-destructive thoughts and actions. I may also run off in a fight-or-flight response.

I have complex PTSD, as well as dissociative symptoms. This means I can experience apparent age regressions. I get triggered very easily. Flashbacks, too, can lead to a fight-or-flight response.

Thankfully, now that I’m on the right medication, I don’t get as many flashbacks as before. However, I still do experience many serious behavioral issues that can be prevented or averted by the fact that I have one-on-one support most of the time.

I’m pretty sure a critical assessor would be countering that my one-on-one would not help me learn to cope with my anxiety. Thankfully, the goal of my long-term care plan is stabilization, not development. In other words, the original assessors for my long-term care funding did not feel I am trainable anymore. Otherwise, I would not have gotten approved for what is essentially lifelong care at all. The only thing is that my one-on-one care exceeds the care normally paid for by my long-term care profile. Oh well, let’s hope the assessor sees my need for it for at least another year.

#WeekendCoffeeShare (September 11, 2021)

Hi everyone. It’s long past my last coffee break of the day, but I’m still joining #WeekendCoffeeShare. Fancy a soft drink or a glass of water? I’m off to bed after I finish this post, but I think we can still have a catch-up.

If we were having coffee (or water or a soft drink, but you get the idea), I’d share that the weather was good for most of the week. On Wednesday and Thursday, the temperature rose to around 27°C. That’s pretty awesome for September, isn’t it? It was also sunny most of the time. We got some slight thundering Thursday and Friday, but thankfully nothing too bad.

If we were having coffee, I’d proudly announce that, thanks to the good weather and my feet cooperating, I was able to get in a lot of steps over the week. I so far got in nearly 75K steps and that’s not including Sunday yet.

If we were having coffee, I would tell you that Shoe Guy finally took my orthopedic shoes to his work station with him. He saw pretty quickly that, not only is the combo with the ankle foot orthosis (AFO) giving me problems, but the shoes are also both far too wide. Let’s pray he’s going to get both issues fixed soon and that’s the end of the footwear saga.

If we were having coffee, I’d share that the day center reopened on Monday after eighteen months of being more or less closed due to COVID. I, thankfully, get day activities in the home. In fact, during the time of COVID, my one-on-one was combined with another client’s care, but I now have my very own day activities shift from 10:15AM till 3PM. I was kind of scared that this’d mean I had taken a staffer away from my old group, but apparently not.

I am allowed and more or less expected to visit my old group for a little while each morning, thankfully with my one-on-one accompanying me. However, last Thursday, I was busy preparing my niece’s birthday present, so I asked if I could switch my visit to the afternoon. That was totally okay. My fellow clients at the day center do definitely appreciate me visiting. That makes me feel so grateful.

If we were having coffee, I’d share that I’ve been busy with my husband’s wedding anniversary present today. That’s the secret project I mentioned yesterday, but I won’t disclose what it is exactly until my husband has received it himself next week. He did jokingly nag me a little, but I won’t spoil it to him either.

If we were having coffee, lastly I would tell you that, no, I haven’t lived under a rock all day, ignoring the fact that it’s the anniversary of 9/11. Okay, I did mention it in my other post today, only to blather on about myself. However, it could be me, but the news seems incredibly quiet about it too here. I don’t watch television or read newspapers, only scrolling through so-called “important” news on my iPhone’s home screen. I’ve seen announcements of the deaths of Peruvian terrorist leader Abimael Guzmán and Dutch former train hijacker Junus Ririmasse. There’s also another protest against Dutch pandemic management measures today. The only news article mentioning 9/11 I’ve seen today, is about some cartoon on politician Sigrid Kaag. I cannot see the actual cartoon, of course.

I do feel a little off having seemed to ignore the world’s major crisis of my teens. Then again, I’d rather live under a rock than get depressed by the world’s events.

How have you been?

#WeekendCoffeeShare (September 4, 2021)

Oh my, it’s September already! I at first was going to type “July” in this post’s title, then thought that it was August, only to realize that month too has passed. The weather is still pretty nice for late summer/early fall: sunny and about 20°C.

Today, I’m joining #WeekendCoffeeShare. I already had all my coffee for the day, so a soft drink or water will have to do. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week has been a true rollercoaster emotionally. It started with my vision screening by the blindness agency. I really want to share more about my feelings of grief and denial about having lost all my vision. In fact, I still always want to put in a caveat about that tiny bit of light perception I still have left whenever I’m saying I’m now totally blind. But I guess that’s what I am: totally blind.

Then again, I don’t want to wallow in my sadness and would quickly move on to demonstrate VoiceOver Recognition and celebrate the powers of technology.

If we were having coffee, I’d also share that the day center is reopening on Monday after eighteen months of being more or less closed due to COVID. My day activities will largely remain in the home with my own one-on-one staff though.

That being said, I did hyperfocus a lot on the details of my activity program and the times staff aren’t directly available for me. This caused some major distress, but I eventually managed to put things into perspective.

If we were having coffee, I would tell you that I finally surpassed my Mom with respect to step count in the Fitbit app. For a while, I myself had been last among my Fitbit friends. I however did get in over 10K steps two days this past week. That’s a big win, considering I struggled to even get to 5K most days last week.

If we were having coffee, I would vent my frustration about my pasta machine, which I use for polymer clay, not working correctly. The thing I use to attach it to the table, won’t work. Thankfully though, the staff who gave the machine to me has a son who may be able to fix it.

If we were having coffee, lastly I would tell you that I’ve been doing a lot of inner work lately relating to my life as a dissociative (multiple personality) system. After some conversations with my assigned home staff, I finally decided to do a system mapping again. Like I mentioned on Thursday, I used to have a list of all of us here on the blog, but removed that as it was less relevant. My staff though do find it useful.

I also downloaded an app called Simply Plural, in which systems can keep track of who’s “in front” (the alter you see on the outside) and can do system polls on decisions too. I will probably write the developer about some bugs in its usability with VoiceOver and some suggestions, but so far, it seems quite cool.

I also finally decided to download some more books exploring trauma and stuff from Bookshare. I might explore the subject more, be it in my personal journal or here.

How have you been?

Mid-Year Reflections

Hi all. How can it be the middle of July already? It’s amazing how time flies. This week, one of Mama Kat’s Writer’s Workshop writing prompts is to look back at your new year’s resolutions for 2021. As I do each year, this year I called them hopes rather than resolutions as a way of lessening the pressure. As I look back though, I seem to be doing pretty well.

My first hope was to eat a somewhat healthier diet. Indeed, I am making sure to eat enough fruit and veg each day, unlike apparently during the last few months of 2020. I however still struggle to make healthier breakfast and lunch choices.

In the exercise department, I’ve not been as inventive as I’d hoped. I blame COVID, as, even though gyms reopened to the public a while back, I haven’t felt comfortable to go.

With respect to getting stable mentally, this is a work in progress. I’ve only actually noticed some seemingly significant improvement over the past month or so, after first falling deep into crisis in mid-June. I cannot say for sure the one-on-one support is helping me get mentally stable, but I do know for sure that I certainly don’t want to go back to the situation before the extra care hours were approved.

Faith-wise, I am still on my journey with God. I pray everyday, read the Bible everyday and am learning to put Jesus first. I am however still struggling. I really want to get baptized, but have no idea where to start, as I don’t currently even go to a physical church. More importantly though, I am still regularly tempted to think that, since God is in charge, I shouldn’t even bother with wanting to be saved.

On the leisurely side of things, I’m doing pretty amazing if I can say so myself. I have kept up a pretty good blogging routine and actually love jewelry-making and bath and body product making again. I am glad I didn’t resolve to be able to do these activities independently, as that’d be an unrealistic goal.

The only area I’m not that satisfied with myself about, is my reading. I did a separate post on bookish resolutions for 2021. I guess I should have called those hopes too, as to be honest, I haven’t really met a single of my goals as of yet.

How did you do on your new year’s resolutions so far?

Mama’s Losin’ It

#WeekendCoffeeShare (June 20, 2021)

Hi everyone on this sunny and comfortably warm Sunday. I didn’t join in with #WeekendCoffeeShare last week again. In fact, I haven’t been motivated to write much at all over the past week or so. Today though, I’m trying to get out of my rut and join the Coffee Share community again. I just had my afternoon coffee and will probably take a soft drink break midway through this post. If you’d like a drink, feel free to get one and let’s catch up.

If we were having coffee, I’d share that the weather over the past week has been beautiful. It was even a little too hot for my liking on Wednesday and Thursday and the nights were uncomfortably sweaty. However, I’m liking this much more than the rain we had over the month of May. We did get some thunderstorms during the night though, which scare me.

If we were having coffee, I’d share that I went to the doctor with my lower abdominal pain that I’ve had for about a week now. I wrote about this on Tuesday, but hadn’t been to the doctor at that point. I went on Thursday and, even though the urine sample I’d sent off for checking, didn’t show an obvious UTI, I did get antibiotics just in case while the sample is being further cultured. The doctor explained that it’s unlikely I’ll develop resistant bacteria, as I hardly ever take antibiotics. I am also to take paracetamol for the pain.

If we were having coffee, I would tell you that I’ve been in a bit of a crisis over the last few days. On Thursday, while I was still in quite a bit pain, my care facility’s manager came by to inform me that I cannot get more support than I get now. I realize it may seem silly to get into a crisis over this, but I’ve been struggling with major anxiety lately and was really hoping that more support could help me.

With respect to the anxiety, my husband tried to be supportive, but I ended up being triggered by some of his words. Like, he said he thinks I might have dependent personality disorder. This was the exact diagnosis I got in the psych hospital in 2016 and which was used as an excuse to kick me out. I don’t want to be kicked out of long-term care. I guess that proves I’m just being dependent though, as like I’ve mentioned before, I wasn’t dying living with my husband.

My husband tries to encourage me to do more things independently. While really I would like to be able to, the activities he mentioned (showering, for example) give me a ton of overload even now that my staff help me. Then again, who knows this isn’t just anxiety and dependency either? Apparently I’m not able, in my screwed mind, to make that judgment myself.

If we were having coffee, I’d share that I’m almost certainly going to start taking the topiramate in early July. I started the depo-Provera injectible birth control last Thursday and I will be able to start the topiramate once I’ve been on this one for two weeks. Now I’m only hoping the antibiotic won’t mess things up again.

If we were having coffee, lastly I would share that today, my one-on-one staff took me to visit her family’s horses. I loved petting the horses. One of them kept reaching for my lower abdomen. The family member whose horses these were, explained that she goes for the person’s body part with the most tension. I guess she’s right.

How have you been?

#WeekendCoffeeShare (June 4, 2021)

Hi everyone! I didn’t participate in #WeekendCoffeeShare last week, but today, I really want to. Even though it’s nearly 9PM, I honestly still crave coffee. So let’s grab a coffee or other drink and let’s catch up.

If we were having coffee, I would share that the weather has been great here over the past week! I mean, right now I’m almost soaking in my own sweat and wishing it could be a little cooler, but it’s much better than all the rain we had during most of May.

If we were having coffee, I would share that, due to the warm weather, I was able to meet my step goal every day of the week so far. In fact, by yesterday evening, I’d gotten in more steps than during the entire week last week. Woohoo!

If we were having coffee, I would share how much I’ve been enjoying nature lately. On Wednesday, I heard a chorus of frogs when walking beside the local canal. Unfortunately, I didn’t have my phone with me and, when I did later that day and yesterday, they weren’t as loud. I still fully intend on capturing some nature video sometime soon.

If we were having coffee, I would share that today, the water system in my care home had to be cleaned professionally because legionella bacteria had been found. It scared me a little, both the contamination and its associated risks, as well as the method of cleaning, which apparently involved chlor gas. I mean, we weren’t allowed in the building while the cleaning took place, but I somehow got it in my head that I’d be forgotten. I wasn’t, of course.

While we had to be outside of the building for the day, some of my fellow clients went to the day center. The staff proposed I go with some other clients to a monkey zoo called Apenheul, which is in the city of Apeldoorn, about a 45-minute drive from Raalte. I initially didn’t want to go, as I felt I’d just be overloaded. Since I would have one-on-one support for the entire day, my staff said I didn’t have to go if I didn’t want to and could decide this morning to sit in the day center or do other activities. My husband tried to persuade me to go anyway and so I did. I didn’t join my fellow clients and took a shorter route through the zoo. Overall, it was a good experience. My one-on-one took some pictures with my phone. Unfortunately, the monkeys didn’t make many sounds.


If we were having coffee, I’d tell you that I might finally start my topiramate next week. At least, the GP figured out my options for going on a different birth control (because topiramate blocks oral birth control) and okay’d my going on the depo-Provera injectible birth control. She said that she’d get back to my staff next week to make sure I can start it. Thankfully, a nurse at my care facility will be able to administer it. Please everyone pray that this means I can start the topiramate soon. I really could use some relief from my PTSD.

If we were having coffee, lastly I would however share how effective learning to be present has been for me lately. This is an exercise I found in the book Coping with Trauma-Related Dissociation and it’s really quite helpful. I haven’t yet been able to practise it when very distressed, but when I’m at a moderate level of distress, it does help.

How have you been?

The Shifting Image of My Care

In September of 2006, when I was still blogging on DiaryLand, I wrote an entry about seeing my life in black and white. I meant not just my life in general, but my care needs in particular. I wrote said post in response to a meeting I’d had with a psychologist several weeks earlier because my behavior at the training home I lived in at the time was spiraling out of control. The psychologist asked me where I saw myself in three years’ time, referring to care needs.

In my response on my blog, I said that I constantly had two images in my mind about what my life would be like, one positive and one negative. These were represented by the two most important alter personalities I had at the time, Carol and Jane.

Jane was fiercely independent. She wanted to live completely on her own without any support, except for maybe a weekly visit from a person to read her mail and the occasional help with deep cleaning.

Carol, on the other hand, saw herself as needing more support. I, at the time, made a point of clarifying that my “negative” image didn’t mean I needed 24-hour care, but that I needed significant help beyond that considered “normal” for someone who’s just blind.

Six months later, I had already discovered that the positive image wasn’t going to come true, yet I shifted my two images. I started to believe that the “good” outcome would be the situation I would live in at my student apartment, which included sixteen hours of support a week. The “bad” image, then, became needing 24-hour care.

You all probably know that the “bad” image eventually came to be true. When I wrote about the 2006 post on my original WordPress blog in 2009, I said that the situation couldn’t get much worse than it had been already at the locked unit. If another three years later, it was worse, I reckoned that’d mean I was in prison or a homeless shelter and hence wouldn’t have access to the Internet.

It didn’t get worse, of course, right? Or did it? I mean, I lived with my husband for some years, but eventually got admitted into long-term care. I now have one-on-one support most of the day. And yet the images are still there.

Jane is still saying I should live independently. Not with my husband, mind you, but fully on my own. Then at least I can’t manipulate people into giving me more and more care and, by extension, cannot drive people away.

There’s another image haunting me. This image wasn’t in my mind back in 2006, or at least I wasn’t aware of it. It is the image of a girl, aged around sixteen, who was a patient in a psychiatric hospital in the late 1990s, where she had been restrained for weeks on end until her parents sought media attention. This is the true worst-case scenario I see in my mind now. But the worst part isn’t the restraints: it’s the fact that the girl was often left completely alone.

I had a few incidents of physical aggression towards staff recently. The staff keep reminding me that they realize that I don’t mean to be aggressive and that they won’t leave me if I am. I hope the worst-image alter, whom I call Rachelle, won’t prove them wrong.

A Very Intense Day Today

Today was an intense day. I started it with a weigh-in. To my surprise, I had lost almost 2kg. Last week, I had gained 1kg compared to the week before, so I had decided to try to cut back on snacks. That lasted all of one day and then I was back to snacking as usual. I don’t really trust my scale, as it isn’t officially calibrated, but well, who cares? I feel pretty fit and healthy and at least remain within the same 2kg range.

At 11:30AM, I had a nurse practitioner’s appt. My new’ish assigned home staff attended it with me rather than my assigned day activities staff, who usually does. Yesterday, this staff had been my one-on-one too and we had discussed my frequent dissociation and switching. She asked me whether I wanted to talk about it to my nurse practitioner and at first I said yes. Then later in the evening, I got anxious and decided to E-mail my nurse practitioner. I explained about the frequent switching and flashbacks. I also expressed my concern that, if the alters take over too much, my team will resort to denying their reality and ultimately to denying my reality as a whole. Then I will have lost all the trust I’ve gained in my team so far.

I can’t remember the entire appt, but at one point, Jane popped forward. She is the one most in denial of my trauma-related symptoms and yet it seems like she’s always the first to pop out and reveal our being multiple to a professional. My staff had probably already met her, and I think so has my nurse practitioner, but not to this extent. Thankfully, neither one objected to her being openly out.

I started feeling depersonalized after Jane was back inside and it didn’t fully clear up till just about an hour ago. In the evening, it got particularly bad.

Then for whatever reason, Karin, one of our fourteen-year-olds, popped out and started talking about a high school memory. We were still partly in the here and now, as she apparently recognized our one-on-one. Thankfully, our one-on-one reassured Karin that she’s now safe and the memories are in the past. She also told us that our teachers and parents, while probably meaning well, didn’t really help us and that none of our issues is our fault. That still feels rather off. I mean, of course I didn’t choose to be blind, but my parents reminded me over and over again that my behavior was definitely a choice. They always saw (and maybe still see) me as one giant manipulator, not an autistic, multiply-disabled trauma survivor. And they’re not the only ones. If I’ve learned one thing in my nearly 35 years of existence, it’s that sooner or later, people will always come to the conclusion that I’m one giant manipulator.

Recovering From Autistic Burnout

Today, the prompt for Reena’s Exploration Challenge is one word: burnout. This word evokes so many thoughts, feelings and memories in me! After all, though I was never diagnosed as suffering with actual burnout, the reason is more that burnout isn’t a DSM-IV or DSM-5 diagnosis than my not having suffered it.

That is, I did indeed not suffer the classic shutdown-type burnout where people are too exhausted to function. Rather, my burnout was more of the meltdown type, where I got so irritable and dysregulated that I couldn’t function anymore.

In 2007, I suffered autistic burnout. This is an actual thing and is more and more recognized by autism professionals too. It involves an inability to function in daily life as a whole, not just work, due to the experience of being overloaded, being autistic in a neurotypical society.

I have shared my experience of landing in a mental crisis in 2007 many times before. I was at the time living independently (though with a lot of community support) and going to university. That all changed within a matter of days: on Tuesday, I was sitting an exam, while the following Saturday, I was a patient on the locked unit of a psychiatric hospital. First, while there, I had to stabilize. I had to get back into a normal sleep/wake rhythm and regain my will to live.

Once I was no longer nonfunctioning and suicidal, however, I had to get my life back on track. My social worker thought I could go into supported housing for autistic people. I, at first, thought so too. Until I saw all the criteria relating to independence, lack of challenging behavior, trainability, etc. That wasn’t going to work out.

To be quite fair, I never fully understood my actual level of functioning until sometime in 2020. I had wanted to prove myself for so long. I had worn so many masks that hid the real, messy truth of who I am. Consequently, I constantly overestimated myself and my abilities. So did the people around me. Until one day, in November of last year, I crashed again. I probably suffered another burnout. That was when my one-on-one support was started.

There still are voices in my head telling me I could, should in fact go back to my life of before my first burnout in 2007. Back to independent living and college. Otherwise, how can I claim recovery?

The thing is, people who experience work-related burnout, usually don’t go back to their exact jobs from before their burnout either, if to the same job at all. Why should I then go back to a life I hated from the get-go? I try to see recovery from burnout not in terms of recovering lost functioning, but in recovering lost pieces of myself.

#WeekendCoffeeShare (May 2, 2021)

Hi everyone on this first Sunday of May. I still honestly can’t believe it’s May already, but it is. Today I’m joining in with #WeekendCoffeeShare. It’s still early in the afternoon, but I didn’t want to be very late with my submission. I’m having my afternoon coffee in a bit, so if you’d like one too, that’s okay. Let’s have a coffee and let’s catch up.

If we were having coffee, I’d tell you that this week was a mixed bag weather-wise. We’ve had sunshine, clouds, wind and rain. The temperatures are still below normal though.

If we were having coffee, I’d be excited to share that, on Tuesday, I went to a playground in a neighboring village with my one-on-one staff. It was King’s Day, so we had the day off from day activities, but I had a lot of fun anyway. The playground had a trampoline, a seesaw and several swings. My husband wondered why I had my shoes on while jumping on the trampoline, but this was apparently allowed.

Me on the trampoline.

If we were having coffee, I’d also share that, on Thursday, I revived my Instagram account. That is, I had posted exactly one photo some four years ago and had deleted that a few months back. On Thursday, as you can see, I uploaded a photo of a soap I’d made with my one-on-one last week. I am not yet certain I will really be posting to my Instagram more often, as I don’t think my pics are really Instagram-worthy, but well. I had fun making the soap and wanted to show it somewhere.

Speaking of soap making though, I’m planning on making a lip balm real soon. I also found out early this week that I will be able to make shampoo bars after all, since it doesn’t require saponification with lye. Now the stuff that is used to make shampoo, is quite concentrated too, but I think I may give it a try after all.

If we were having coffee, I would tell you that the physical therapist once again urged me to wear my AFO after all. It still hurts and, to be honest, I feel as though she dismisses my pain. Then again, I understand the need for the AFO. Let’s just hope my semi-orthopedic shoes will be here soon. I doubt it though.

If we were having coffee, I’d tell you that the manager came by on Thursday to inform me that the opening for a new staff had finally been filled. The new staff will start orienting at my home tomorrow. At first, she will not be working with me, but eventually she might.

If we were having coffee, lastly I would share that I spent the weekend in Lobith with my husband. We had delicious meatballs for dinner yesterday. We also had rice and cucumber. In the evening, my husband gave me a picky eater test he’d found online to see if I had a high score. I scored eleven points, he scored six. Then again, I probably was a little strict on myself, as I said for example that I wouldn’t eat celery. This morning, it was in a salad we had for breakfast and, while I didn’t love it, I didn’t hate it either. There are only a few foods I definitely will not eat. That being said though, the list of foods I’d rather avoid, is quite long.

How have you been?