Time-Out Rooms, Comfort Rooms, Snoezelen® Rooms: Special Care Rooms in Mental Health and Disability Services #31Days2021 #Blogtober21

Today, I’m not feeling too inspired. The optional word prompt for the 31-day writing challenge is “Comfort”. For some reason, probably the fact that I’ve been experiencing a lot of flashbacks to my time in the mental hospital lately, I was immediately reminded of comfort rooms. Then I thought, maybe I could use this post to raise some awareness of the different kinds of special care rooms used in mental health and disability services.

Back in my early days in the mental hospital in 2007, seclusion or isolation was pretty commonly the only intervention used, maybe in combination with forced medication, on disruptive patients. I was initially admitted to the locked ward only because the open ward had no available beds. During my first night in the hospital, I heard a lot of screaming and was later told that the staff “handled it appropriately”. Another patient told me that the screaming patient pretty much lived in the seclusion room. I was pretty scared out of my mind.

Once moved from my parents’ city hospital to my own city’s locked ward, I again experienced seclusion as a witness repeatedly. The ward I stayed on, was the less restrictive locked ward, so it didn’t have isolation rooms. Rather, ours were called time-out rooms, but that didn’t make them any better to be honest.

I experienced one hour forced time-out once, three months into my mental hospital stay. After that though, it was used as a threat repeatedly. This, for clarity’s sake, is illegal: seclusion can only be used to avert danger, not as punishment.

About three years into my mental hospital stay, some wards, particularly locked wards, started deconstructing their seclusion rooms and repurposing them as “comfort rooms”. A comfort room in theory looked nicer, as it had soft toys in it and maybe some special lighting. However, them being repurposed seclusion rooms did mean they still had the vibe of isolation about them. Indeed, the few times I was sent to the locked ward for a time-out once at the open resocialization ward, I spent my time in the “comfort room”. This did not feel comforting at all.

My last psych ward, which I spent four years on between 2013 and 2017, had both a comfort room and a time-out room. This comfort room was indeed actually comforting. There was an essential oil diffuser, a CD player, comfy couch and a few other things. What made it different though was the fact that you couldn’t be locked up into it. If you were to be locked up, it’d have to be in the time-out room.

At the end of my psych hospital stay, I first learned about snoezelen®. This, like I’ve explained before, is a method of helping people with significant intellectual or developmental disabilities by modulating their entire sensory environment. I wanted to experience what a snoezelen® room would be like. My psych hospital had an intellectual disability unit with a room like this, but my psychologist refused to let me visit it, claiming I’m far too capable for this type of activity. I stood my ground and got a place at my first day center with my current agency, which did have a snoezelen® room.

When I was at my first day center with my current care agency, the snoezelen® room was sometimes used as a time-out room for me, in that I was forced to go in there when I was irritable and not allowed to come out. Though the door couldn’t be locked, it did feel intensely triggering to me. It is one reason I still struggle to be in my current day center’s snoezelen® room if no staff is present.

Of course, I must say here that an old-fashioned time-out room has hardly any furniture: just a bed and a stool, both attached to the floor, as well as a toilet made of metal. The seclusion room the screaming patient from my first night in the hospital was locked into, was likely even worse. Comfort and snoezelen® or other sensory rooms are much better. Still, the idea that someone can be put into solitary confinement against their will, is rather disturbing if you ask me.

Ways of Finding Inner Peace #31Days2021 #Blogtober21

Yay, another post today in honor of #31Days2021 and #Blogtober21! The optional day 3 prompt in the 31-day writing challenge is “Peace”. I have been very much on edge over the past couple of days, so I really could be using a sense of inner peace right now. I am not too inspired to write, especially about finding peace. To get some ideas, I reread my list of activities that give me inner peace, which I wrote about three years ago.

The activities could be divided into several categories. Some are spiritual in nature, such as meditation. I wasn’t a Christian at the time, so I’d put prayer and Bible reading in this place now.

Others are physical, such as walking or exercise. I honestly didn’t think of exercise as an activity to give me inner peace right now.

Then there are the sensory activities. I have a lot more of those available to me right now than I had back in 2018. For example, now that I have a music pillow, I can not just listen to soothing music with headphones on or through speakers in my room, but through speakers integrated into my pillow. In addition, I obviously have my essential oil diffuser and my weighted blanket now, as well as still having my sensory cat soft toy and several other stuffed animals. I can almost create a sensory room in my own bedroom.

Writing is an activity that still helps me. So does talking to my staff. When I struggle with worries, writing them out just for myself, will not usually be enough, but sending an E-mail to my staff is.

Lastly, there are of course mental strategies for dealing with distress, such as radical acceptance, opposite-acting or “worry time”. Unfortunately, I haven’t found many cognitive approaches to finding inner peace helpful at all.

What strategies or activities help you find inner peace?

#WeekendCoffeeShare (October 3, 2021)

Hi everyone on this rainy Sunday. I’m joining #WeekendCoffeeShare this afternoon. I may add another post for Blogtober and the 31-day writing challenge, though neither challenge requires you to follow a topic or prompts. In this sense, this post could count as my daily post for October 3. We’ll see if I can still find time to write a post on today’s optional prompt too.

As usual, I just had my afternoon coffee, but I’m pretty sure the other clients are still having theirs. Let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that this week is a bit meh. It seems it’s the beginning of fall that’s causing me to feel more depressed and less inspired than usual. I have been going for a few walks over the week, but not many due to the rain. I also hardly did anything crafty. Today, I spent a lot of the morning and early afternoon in bed.

If we were having coffee, I’d share about my care plan review last Thursday. Like I said in my previous posts, it went mostly as expected. It did create some stress in me related to the upcoming reassessment of my one-on-one care. The behavior specialist also told me at this meeting that she’s going to work at another care facility that’s part of this agency, so she will no longer be assigned to my case. It’s not yet decided who her successor will be, but that should become clear pretty soon.

If we were having coffee, I’d tell you that, the evening after the care plan review, my assigned home support staff left her shift early due to being sick. Everyone else is telling me she just has the flu, but I somehow got it in my had that she is suffering burnout and it’s my fault for having sucked up her energy too much.

This situation led to a bit of a crisis Friday night. I left my room initially looking for the late shift, but she’d already left the building. However, my room-leaving detector didn’t alert the night staff yet, probably because it was just before 10:30PM. The people who would receive my alerts at night, are at the main institution in another village and they are then supposed to call the night shift here. In other words, there is no way I can alert the night shift here directly. I went looking for help, but the outside door of the home was already locked.

This led to a bit of a panic and I went into dissociative mode. I grabbed a chair and climbed over the half-door into the kitchen (the kitchen is locked at night to prevent me entering it and self-harming). I tried to self-harm in several ways, but thankfully didn’t really get hurt. When the night staff came to get another client to bed, she saw me and helped me to my room.

If we were having coffee, I’d tell you that, despite all the troubles, the week will likely end on a positive note. Several of us clients have not received meal delivery service meals this entire week because we were supposed to be emptying out the freezer. This did mean I got a lot of the same meals this past week and today I said, if I got noodles again, I’d ask my one-on-one to drive me to the supermarket so I could buy a salad or something. Turned out one of the other clients whose freezer was supposed to be emptied, didn’t fancy his meal for today either, so the staff agreed to order food from the local Italian restaurant. I will be getting a tuna pizza.

How have you been?

Why I’m Content in My Current Care Facility #31Days2021 #Blogtober21

Last Thursday, like I mentioned before, I had my care plan review here at the long-term care facility. It was my first one, even though I’ve been living here for two years, because last year’s got canceled due to COVID. As we were discussing my progress over the past two years and my wishes for the future, I said that I’m about 95% sure I want to stay here. That’s huge for me, as I’ve been constantly on the lookout for another place to move to particularly over the past year.

This brings me to today’s prompt in the 31-day writing challenge: content. I at first wasn’t sure what to write about on this word. I mean, I wanted to write why I’m content living here, but somehow it felt kind of off. Then I read Lesley’s contribution to the challenge, Contentment Without Complacency, and realized that being content where you are doesn’t mean there’s no ground for improvement. So, with no further ado, I’m going to share why I’m content living in my current care facility.

First of all, I love the way my staff support me. As regular readers of this blog will know, I’ve had quite the journey through the care system. I resided in a mental hospital for 9 1/2 years, where there was constant pressure on meeting goals and getting better. Before that, I lived on my own and, before that, in a training home. As the name suggests, it was heavily focused on independence training.

For those not aware, my current care facility primarily caters to people with an intellectual disability. All other clients in my specific home have severe to profound intellectual disabilities. For this reason, my staff are used to helping them with everyday activities such as mealtimes, personal care, etc.

They are also used to clients needing staff to realize that correcting challenging behavior will not be effective. Whereas in the mental hospital, I used to be often left to my own resources if I’d done something self-destructive, now my staff provide me with affectionate care. This might be seen as reinforcing the behavior, but in my experience, quite the opposite is true.

In addition to liking my staff’s care approach, I like my fellow clients’ lack of social expectations of me. One of my fellow clients will occasionally come to my room asking me to wish him goodnight, but other than that, the clients hardly interact with me. One wish for the future that I voiced at my care plan review, is more interaction with other people, particularly those of higher intellectual level. I do have a couple of friends in other care homes that are part of the complex, whom I talk to when going to the day center or when outside. I however am grateful that I don’t live with these people 24/7.

I also like my room. Some staff call it an apartment, since I have my own bathroom and small kitchenette. I also have my own balcony. I honestly haven’t had a better room in any of my previous places in the healthcare system.

Overall, the reason I’m not 100% sure I want to stay here, doesn’t seem to have to do with my facility itself. It is rather related to my own anxieties and insecurities. Of course, things could always be better, but that doesn’t mean I’m not content exactly where I am right now.

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.

Total Blindness

A few weeks ago, the topic of MindloveMisery’s Menagerie’s Tale Weaver was the loss of the sense of hearing. I was secretly hoping for a tale weaver on its visual counterpart to come up and my wish was granted today: today we’re asked to weave a tale about a character who’s blind. It doesn’t necessarily have to be fiction or so I believe.

As most of my readers know, I have always been legally blind. I at best had around 20/800 visual acuity in both eyes, although I claimed to have 20/400 for a long while. By the time I was eight or nine and was pretty much given up on vision-wise by my doctors and parents, I had roughly 20/1000 vision in my left eye at best and my right eye was even worse. For those who have no clue what visual acuity means in daily life, I was able to see someone raise their hand at one meter’s distance but not count their fingers.

Even so, I didn’t consider myself functionally blind until I was thirteen and transferred from special education to a mainstream setting where I was the only person with a visual impairment. There, there was no point in accentuating my tiny bit of vision, since compared to my peers, I was as blind as a bat.

To this day though, I find it hard to accept the fact that, in essence, I’m now totally blind. I only started considering this possibility after my most recent visual screening at the blindness agency, which revealed that I only have a small window of light perception left in the central part of my left eye’s visual field. For those unaware, light perception is the ability to detect the presence of the eye doctor’s flashlight, but notably not the ability to detect what direction it is coming from (that would be light projection). In other words, I am no longer able to tell where a window or other light source is located within my visual field or even whether there is a light source present if I’m not directly looking at it.

Since I always had some residual vision, no matter how little, I have always wondered what total blindness would look like. One day in fifth grade, one of my support staff told us about having been blind for two weeks due to some disease and it not looking like darkness at all. Other blind people have asked rhetorically: “Does your forehead see darkness?” No, of course it doesn’t.

Like I said, I was given up on by the eye doctors when I was eight or nine. For this reason, I didn’t have regular visual check-ups. I had one in 2005 at the blindness rehabilitation center and then again in 2013 in preparation for cataract surgery. In 2005, I had light perception and some level of environmental light awareness in both eyes. By 2013, I had gone completely, totally blind in my right eye. However, I was unaware of this until the optometrist tested my light perception in both eyes.

Since being made aware that I’m totally blind in one eye, I’ve tried to cover my left eye to see what total blindness looks like. I seriously don’t get a clue. In fact, the closest I come is that blindness, indeed, is the absence of any sight at all, including the sight of darkness.

This does make me think that, when (I’m pretty sure it’s “when”, not “if”) I’ll have lost that last tiny bit of light perception in my left eye, I won’t be aware of it at all for a while. It terrifies me.

Childhood Ambitions

Last week’s topic for Truthful Tuesday was what we as children wanted to become when we’d grow up. I already discussed this at length last year, so really didn’t feel like boring my readers with the same old stuff again. I mean, I didn’t end up becoming a professor, a psychologist or a published author, or for that matter any of the other things I wanted to be when I’d grow up. Then I saw the topic is being continued this week. That got me thinking. Maybe, if I look at it differently, I did fulfill some of those childhood ambitions.

For example, I may not be a published author yet. Well, I am, if you count that one short piece of writing published in an anthology back in 2015. But I hardly count that. What I do count, is my blog. Back in my childhood years, the Internet hardly existed, so if I wanted my diary published, like Anne Frank, I’d have to have it traditionally published. Well, thank goodness I don’t strive for that at all now. If I’m ever going to get anything published in print in the future, it will be something much better than those crazy diary entries. But I digress.

Another ambition I reached, is inspiring others, including professionals. As a young teen, I wanted to become a psychologist so that I could help improve care for children or people in general with complex care needs. Though I’m not even a peer support worker by qualification, I have given informal lectures to medical students and other professionals.

Thirdly, I have vastly expanded my knowledge of psychology, education and related topics. I may not actually be of value to anyone with this knowledge except in the ways I mentioned above. However, if you asked my parents what my ultimate passion was as a child, they’d invariably say “collecting knowledge”. I may not have graduated college or even come close. I may live in a long-term care facility for people with intellectual disability. I may not be as much of a nerd as I was when I was younger. However, I still definitely use my brains.

Other ways in which I contribute to the world that I couldn’t even imagine as a child, include my creative endeavors. I bring a smile to my fellow clients’ faces when I bring them handmade gifts. I also am much more empathetic and sensitive than I could’ve imagined I would be. That makes me much prouder than having achieved my high level high school graduation.

What childhood ambitions did you manage to fulfill?

Hope and Faith

Today, Sadje’s Sunday Poser is about your rock in the storm. Who or what keeps you going when the times are tough?

For now, I could – should, maybe – easily say it’s my faith. I became a Christian last year and feel very much comforted knowing that, in the end, it’ll be okay. Not in this life, mind you. Jesus never promised us that there would not be any obstacles in this earthly life for us. Quite the opposite, in fact. We will still physically die and the Bible doesn’t promise Christians any easier end to their earthly life than non-believers. But in the end, in the Kingdom of God, it will be okay.

However, like I said, I didn’t become a believer until last year. I did kind of believe in “something” for many years, but that didn’t quite amount to much. So what kept me going until I started following Christ?

I guess the answer is as simple as the one above, and somewhat related too: hope. I always kept hope alive that, in the end, things would be okay. Even in the darkest depths of my suicidal crisis in 2007, there must’ve been a reason I in fact called my support worker to say goodbye rather than just killing myself without informing anyone. I felt, deep down, that there was still a way out of my darkness, even if I didn’t know what it was right at that moment.

At the time, my rescuers were the crisis service people in my parents’ city, who proposed I get admitted to the mental hospital.

That being said, I’ve never really felt that specific people are my rock in the storm. I mean, of course I appreciate my husband supporting me through everything. However, as unlikely as it is, I always have at the back of my mind the possibility that I’ll lose him at some point. That’s a residual effect of my having had very little stability in my life.

However, hope has always kept me going. It is interesting in this respect that most people who superficially know me, see me as a pessimist. I might look at things from a negative angle most of the time, but when it ultimately comes to it, I always have hope.

#WeekendCoffeeShare (September 25, 2021)

Hi everyone on this cloudy but warm Saturday afternoon. We’re supposed to get temperatures to rise to as high as 25°C tomorrow. I remember once, I think it was in 1999, writing in my diary in late September that I wished for this high a temperature for once that year still. Three or four years ago, it even got to 27°C one day in mid-October.

Anyway, I’m joining #WeekendCoffeeShare. It’s 2:30PM, so I just had my afternoon coffee, but the other clients are still having theirs. Yesterday, the late shift actually came to my room with another cup of coffee at 3:15PM, because apparently the other clients had been late having theirs and she erroneously thought this meant I still needed to have coffee too. I didn’t mind, of course. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that I managed to get my corona pass ready in time for this requirement in restaurants and indoor events today. Not that I’m likely to go eat out at a restaurant or go to the theater anytime soon. In fact, I’m feeling a bit off about this requirement, even though, as a fully vaccinated person, I’m good to go. Getting the CoronaCheck app, on which you need to create your pass, to work, was a bit of a hassle, because for some stupid reason the “Next” button to get beyond the introductory screen wasn’t easy to locate with VoiceOver. I eventually asked one of my staff to click that button for me and from there could do everything myself.

If we were having coffee, I would share that I celebrated two years in the care facility earlier this week. I made a cheesecake with my favorite large cookies, ie. stroopwafels.

Stroopwafel Cheesecake

I did worry at first whether the other clients could eat it, as most are at higher risk of choking. However, apparently the staff were able to sufficiently blend the cake so that it was edible by everyone.

If we were having coffee, I’d tell you that this week was quite a good one in the walking department. I got in over 10K steps almost everyday. That one day that I didn’t reach my goal, I really should have looked at my Fitbit, since I needed only like 100 more steps to reach it.

If we were having coffee, I’d tell you that, at the recommendation of one of the community psychiatric nurses at the mental health team, I’ve been taking my phone with me whenever I go on walks. We were discussing my grief about my vision loss and the wonders of technology and she suggested I take more pictures on my walks. Last Tuesday, I took a picture of the cows in a nearby field.

Cows in a Field

If we were having coffee, lastly I would share that I sadly haven’t been too creative lately. I tried to create a necklace this morning, but found out midway through it that I didn’t have enough of a certain kind of beads that I needed for it. I didn’t want to start redesigning it all over again, so will do that at some later point.

Overall, this week wasn’t too intense, other than Wednesday. It was a pretty good week.

How have you been?

Grateful For the Right Care

Today’s prompt for Five Minute Friday (#FMF) is “Care”. Most writers, I’m assuming, are writing about how God takes care of them, how they should not be distracted by the cares of this world, how important it is to care for others and other spiritual meanings of the word “care”. I do find these important too, of course, but was particularly impressed with the timing of this prompt. After all, yesterday marked my two years being in the long-term care facility.

I cannot keep from thinking that God put the people and circumstances in my life that led to me being here now. He did, as He has a plan for all of us. However, since I didn’t become a Christian till late last year, before then it was easy to consider these circumstances, these people, all working together to get me the right care, just chance.

I want to use this space to give thanks for the blessing that is my being in long-term care, with my current support team and my current care plan. I also want to give thanks to all the people God put into my life who worked and in many cases continue to work so tirelessly to keep it this way. My support coordinator and support workers from when I lived with my husband. My psychiatric nurse practitioner at the time. The Center for Consultation and Expertise coordinator and the consultant she hired to help get me the right care. My staff at my old day center. My staff, the manager and behavior specialist here at the long-term care facility. The people in authority who decided whether to grant me long-term care funding at all and eventually decided to grant me the one-on-one I get now. Last but not least, my husband, who sticks by me through it all.

Looking back at all the time I’ve been busy fighting for the care I get now, I realize some of the events are nothing short of miraculous. I am so intensely grateful for this!