If The Staff Saw My True Nature…: Reflections on Not Belonging

Yesterday, I was in yet another crisis. I was majorly triggered when a staff told me at the dinner table to calm down or go to my room because she had other clients to attend to as well. This triggered both my fight and flight responses. I was completely convinced that this one remark proved that, if staff truly know me, they’ll abandon me. After all, if they truly knew my nature, they’d know I needed more support than they can offer. I was and still am intensely ashamed of this nature of mine, but for whatever reason, I cannot seem to change it.

I cannot stop this part of mine who thinks she needs almost literally one-on-one support all day. It isn’t even a sense of entitlement, since I don’t feel that I’m somehow deserving of more attention than the other clients. Or maybe at the core I do believe this. I’m not sure. My parents would say I do believe I’m somehow entitled to endless attention.

At one point, I lashed out at the staff member. This led to further intense shame. I was convinced that, in that moment, the staff had seen my true nature and that she was going to make sure I’d be kicked out.

For whatever reason, she didn’t. She did, I assume, write an incident report. Other than that, I must say she was incredibly nice all evening.

And yet all day I was convinced that, if the staff nor the manager were going to kick me out, they must not have seen how wicked I really am. I do know that, in truth, this was one of my worst outbursts of aggression ever. I’ve done more harmful things, but those were harmful only to myself.

The manager came to talk to me late in the afternoon. She reassured me that I won’t be kicked out. I tried to tell her that, despite my desire to be good, I feel I might need more support than my current home can provide. I wasn’t trying to elicit her pity or convince her to apply for more funding for me, but I was trying to make it clear that I may be more of a burden than she can handle. I don’t want to feel attached to the staff and the home and even some of the other clients only to be told in a month or two that after all I’m too much of a handful. The manager sort of reassured me.

And yet, when she was gone, I went online and looked at other places I might be able to move to. Not because I really want to move, but because that’s what I’m used to. I’m used to not being wanted anywhere. And it’s tempting to believe that, with how often I end up in crisis here, I don’t really want to live here myself. Ugh, I don’t know how to answer that question.

In Crisis Yet Again #Blogtober20

Okay, this may not be the most appropriate post for #Blogtober20. After all, the prompt for today is “relax”. It is also World Mental Health Day. Most people would use this to advocate for better mental health services, or to share tips on coping with mental health issues. Tonight, I’m too stressed out to do either. In fact, this is just going to be a raw post on my having been in crisis tonight – and not having fully recovered yet as I write this, in fact.

I was on edge all day. By mid-morning, I started feeling irritable, but it was still manageable. When it was time for lunch, a different staff from the one assigned to my side of the home came to eat with us. We also didn’t get the usual weekend lunch stuff, such as sausages, pancakes or soup. We did get a baguette with cream cheese on it. It was okay. IN fact, I much prefer that to our weekday lunches. I don’t think it’s even the fact that I didn’t get the treat I wanted, that set me off, but the fact that so much was different about the lunch. Thankfully, after being on the verge of a meltdown for a bit, I was able to calm down.

Then in the evening, I spiraled into crisis. I don’t even know why honestly. I was getting very irritable about the staff having the TV on even though the volume was turned to low. Within the next fifteen minutes or so, I landed in a full-blown meltdown that seemed to last forever. I eventually asked the staff to fetch me a PRN lorazepam, but then somehow got it into my mind to climb over the balcony railing. I didn’t, but the mere fact that I was standing on my balcony on bare feet in the rain and disclosed my thoughts, worried the staff.

I was near a staff all the time until I had to go to bed at 10:15PM because the evening staff were leaving. They did remove the knob on my balcony door, so that for now I cannot go on there. I gave them permission for this, for clarity’s sake.

The lorazepam has started to kick in, but I’m still pretty tense. I must say that I am completely in awe of how my staff handle my challenging behavior too. It must be hard having a mentally disturbed person on an intellectual disability unit. In psychiatric care, they’d probably have sent me for a time-out off the ward. After all, psychiatric professionals commonly see me as a borderline case. I’m not sure my current place is the most suitable for me, but the staff definitely are.

#Blogtober20

We’re In Pain

So we’ve had a mouth ulcer for some days now and as of today, it really hurts. Our staff called the GP, since we can’t go to the dentist now due to our facility’s COVID-19 restrictions and also since they already knew it was a mouth ulcer. The medical assistant couldn’t decide what to do right away so she talked to the doctor herself. Our staff called back some time later. At first, the doctor said to just take paracetamol, but our staff nagged a bit, so now we’ll get some lidocaine gel. This will probably arrive tomorrow.

We somehow misunderstood the doctor’s telling our staff to just give us paracetamol as her thinking we weren’t in significant pain or that we were overreacting. This caused some of us a lot of upset. Over dinner, we were feeling really overwhelmed by the pain and also other clients’ noise. We somehow couldn’t speak until after we’d had a full-on meltdown. Then we got to express our pain and our staff fetched us some paracetamol. That did help some. We’re still in pain, but it’s manageable.

We generally feel very triggered of late. We’re currently reading a foster care memoir by Maggie Hartley called Who Will Love Me Now?. It’s about Kirsty, a ten-year-old being rejected by her first foster carers after they took her in from a neglectful biological mother as a baby. Understandably, Kirsty feels that no-one loves her now and is acting out a lot to prove this point.

I feel a lot of the more disturbed younger parts can relate to this. Thankfully, our parents never abandoned us, but they did threaten to institutionalize us a lot. Age ten was around the time this started.

I also showed a lot of the behaviors Kirsty shows. I mean, I would also often tell my parents that they didn’t love me. Though I didn’t experience the early abandonment Kirsty did, I do most likely suffer with some attachment issues. I can only speculate as to why this might be.

As we’re now in a place where at least so far the staff are saying we can stay, I notice we act out a bit out of a need to “prove” our point. Which is what, really? That no-one wants us, I guess. I’m not 100% sure how to let go of this feeling.

I did journal a lot in my Day One journals over the past few days. It feels good to let out my thoughts. I’m trying to make this a daily habit and hope my blog won’t suffer because of it.

I Think We Found a Relatively New Alter

So last Friday we for whatever reason landed in a bit of a crisis. Our husband would be visiting us on Saturday and for some reason, we convinced ourselves he was coming to say he wanted to break up with us. Like I said yesterday, it turned out he wasn’t. He’s such a great hubby!

The night staff checked on us at around 10:45PM. This had been agreed on after our crisis last week, because we were scared to press the call button at night. We told the night staff that we were anxious. She tried to tell us to try to get some sleep. Obviously that didn’t work out.

After we’d been going on the computer for a bit, we decided to E-mail our husband. Then, for some reason, we eloped and wandered around outside of the care facility for a bit. We after about half an hour tried to find our way back, but the doors to our home and to all other homes were locked. We started to scream out for help and finally, the sleepover staff heard us. She and the night staff came to our rescue. Of course, we were asked why we hadn’t pressed the call button. So far, I have no idea.

Then yesterday evening, we were watching a video on the Dutch Center for Consultation and Expertise website. It was about a young woman with severe attachment disorder. In the midst of it, our staff came into our room for something, I can’t remember what. We got really agitated and that’s when I realized this might be a relatively new alter. The girl in the video was called Deborah, so that’s the name this new one chose.

What is so unique about her, is her tendency to “test” the staff’s willingness to help us. Some of us, and this may include her, get triggered when we perceive we’re getting less help than we think we need. Some of us express this appropriately, but Deborah doesn’t. She, rather, gets really agitated and self-destructive. Unlike the Deborah in the video, she hasn’t been aggressive towards others as of yet, though inside she definitely feels like it.

We discussed Deborah’s needs with our assigned support worker just yet. She tried to reassure us that we don’t need to leave the care home. Deborah is lucky that she had me (Clarissa) nearby to explain.

Our staff will have a meeting with the behavior specialist and physician tomorrow to discuss our care. We may get a door sensor, which alerts the night staff when we leave our room. After last week’s crisis, we also gave some of the things we were thinking of using as self-harm tools to the staff. This should hopefully be enough, though Deborah’s behavior is in some ways getting worse. We hope it doesn’t get so bad that we need more support than our home can provide.

Clarissa

#WeekendCoffeeShare (April 5, 2020)

I more or less abandoned the What Day Is It Anyway? posts when A-to-Z started, but I wanted to write a check-in anyway. I am joining in with #WeekendCoffeeShare, although it’s a bit late for coffee. I did have a cup of decaf about an hour ago. I also just had a nice orange-pineapple-guava drink. I am not a big fan of fizzy drinks, but thankfully usually we have some non-fizzy soft drinks or juice in the fridge for week-ends.

If we were having coffee, I would ask you all how you’ve been doing on your third week of lockdown. I had a pretty good week. It was better than last week. Last week, after all, I landed in some crises due to missing my husband and all the change that is brought on by this COVID-19 thing.

If we were having coffee, I would share that on Monday, my home’s manager came to talk to me. I was scared at first. Thankfully, she came to reassure me that I won’t be kicked out of the facility for having challenging behavior. That was quite a relief to me.

If we were having coffee, I would share that I made delicious crispy chicken with the staff intern at day activities on Tuesday. I made them with dorito chips for the crisp. I think I’d prefer them with slightly more spicy doritos, but I had intentionally picked the cheese-flavored ones, as I normally don’t like the paprika or chili-flavored ones.

If we were having coffee, I would share that I didn’t do as well on my step goal as I did last week, but I still managed to get to 10K steps once and reached over 8K steps on three other days.

If we were having coffee, I would share that I struggled a bit with health anxiety at the end of the week. Like I mentioned in passing in one of my A-to-Z posts, I’ve been convinced for years that, once I’d find a suitable living place, I would get a serious illness and die. This caused me to feel some intense anxiety when I had some health symptoms. Thankfully, I was able to talk it through with my staff.

If we were having coffee, I would tell you that I would originally have had a phone appt with my community psychiatric nurse from mental health last Friday. I waited for twenty minutes for her to call and then decided to call the secretary. Turns out my CPN was off sick and the secretary had forgotten to tell me. Thankfully, I didn’t have a face-to-face appointment.

Because I was struggling a bit, my staff arranged for me to have a phone check-in with the facility’s behavior specialist. She was pretty good at calming my nerves. She reminded me to look at today only. I won’t die today and I won’t be leaving the facility today. That was helpful.

If we were having coffee, I would share that I’d been trying to record a video and then take a picture of myself for my husband. I reasoned he may like to see me now that he can’t come here. We don’t normally video call or anything, so he hadn’t seen my face in a month or so. Unfortunately, the picture I took showed my eyes and nose only. I wonder how other totally blind people learn to take pictures. Anyway, I finally had my staff take a picture of me. In this picture, I’m holding my stuffed panda. I often cuddle it when I miss my husband, because the panda is the largest soft toy I own. No, my husband isn’t fat like the panda, LOL.

How have you been?

Thankful Thursday (March 26, 2020): My Staff’s Approach to a Meltdown

Today I’m having a really hard day. I found out this morning that my husband is not allowed to visit me for the duration of the COVID-19 situation. Only in exceptional cases such as when you’re terminally ill can you have a visitor. Well, I guess I’m grateful I’m not in that situation.

During this time of day activities at the home and the chaotic situation that ensues, I’m struggling a lot with basic mistrust. As I explained to my staff, including the behavior specialist, some weeks ago, I’m finding that I experience a lot of distress due to past trauma. I’m pretty sure I suffer with significant attachment issues and am acting those out towards the staff now that I’m beginning to feel slightly safe. I mean, there’s a part of me who says that if the staff truly know me, they’ll kick me out of here or abandon me in some other way. I guess this part is giving the staff a hard time because they’ll ultimately abandon me anyway so I’d better push them away first.

As such, this afternoon, I had a major meltdown. I was watching a video on the Center for Consultation and Expertise website about a man with mild intellectual disability who had a lot of challenging behavior. The way in which I could relate to him, triggered me. I tried to tell my staff, but couldn’t and then I threw a glass to the ground.

Now here comes the reason I prefixed this post with Thankful Thursday: my staff were amazing about it!

My assigned support worker, who happened to work on my side of the home today, called another home for a staff to come over. This was a staff who had also worked in my home previously. She hugged me and took me to my room to talk while my assigned staff cleaned the mess.

This did further trigger me, but it was a good trigger. I mean, in the psychiatric hospital I would’ve been secluded or kicked off the unit and basically abandoned. I had tears of gratitude and sadness at the same time because of how lovely my staff handled this situation. My assigned staff even said maybe we should watch the video together sometime so that I could point out in which ways I relate.

Now here’s hoping my behavior won’t escalate further. After all, then I may in fact be abandoned. My inner critic still says that I’m making up all the factors behind my challenging behavior and it’s all just attention-seeking and abandonment is exactly what I deserve. Regardless, I’m so extremely grateful for my staff!

A Mixed Monday

Today is a truly mixed bag! I started out feeling relatively well. The flu seems to finally have left me, although I still sound a bit hoarse. Then in the morning I ate just a little too much sugar-free liquorice. This type of sugar-free liquorice has manitol in it, which works as a laxative. If I eat moderate quantities of liquorice, I’m totally fine, but if I eat too much, I get like the worst diarrhea imaginable. I thought I hadn’t eaten ntoo much, but apparently I had. If my husband reads th is, he’s going to say he warned me.

I was still relatively okay during the morning. Went for a short walk. Then in the afternoon I didn’t feel well. This usually affects my mood before I’m even aware I’m physically unwell. I started to get really frustrated with how quickly my iPhone battery level would go down, which honestly isn’t that quickly at all given it’s an older model. Then I started to get annoyed with my fellow clients’ sounds. My fellow clients are all non-speaking, so it really is no wonder they make sounds. Just because I can’t understand them, doesn’t mean they need to shut up. Finally then I got annoyed with my staff having mindless chatter while I was trying to indicate I wanted help finding something to do. I found a simple shape-sorting task eventually, but it didn’t satisfy me. In this sense, it frustrates me that I need the level of support and low-stress environment geared towards people with severe intellectual disabilities, but at the same time need much more stimulation. My range of understimulation and overstimulation even seem to overlap a lot, so that my window of tolerance is very narrow. I try to tell myself I just need to accept boredom if I want to keep my level of support, for if I am judged to be too much of a handful, the result is likely that I get less support. That being said, telling myself not to be a pain in the neck doesn’t mean I actually am not a pain.

Finally, I started talking to my assigned staff. We agreed to try out soap making again someday soon. It’s something I enjoy and is a relatively quick activity even if I need hands-on assistance, that will nonetheless satisfy me for a while. I will ask my husband to bring my soaping supplies when he next visits me.

When I returned to the care home, I browsed my favorite soaping supplies store. I was talking to my assigned day activities staff about also knowing how to make lip balm. That’s an even easier activity that can be made more complex by using individual oils and butters rather than ready-made lip balm base. While browsing the store website, I came across a starter kit to make your own bath bombs. I’ve been wanting to do that forever, but since the goal up till recently has always been full independence, I thought this wouldn’t be a suitable activity. When I get back in the swing of soaping, I may buy myself the starter kit. It has some supplies I already have, such as colorants and fragrance oils, but you can never have enough of those. We have a bathtub at the care facility, so I’ll actually also put them to use.

In the evening, I was so excited I wanted to tell my home staff about the soaping idea and the bath bomb craziness. Then however the staff were talking among themselves for like an hour. They weren’t talking about clients, but still I beat myself up over wanting to interrupt them. That led to more frustration and overload and I eventually ended up banging my head. I feel incredibly annoyed with myself for being an attention-seeker like this, even though I didn’t act out when I thought the staff were looking. They eventually were though. Now I’m not sure whether this will eventually be used against me to kick me out. The staff said no, I won’t be kicked out, but in the end if I don’t change will they not reason life isn’t better in the facility for me? It is better, generally speaking, but I still struggle a lot.

Loss #WotW

This was truly a mixed week. I wanted to write a gratitude list for it, and maybe I will do so tonight, but right now I don’t feel like it.

On Monday, I attended day activities as usual. A fellow client, an older man, attended too as usual, but he was very unwell. He had been ill for a long time and the staff had feared for his life on a few prior occasions. I attended day activities during the morning only and I worried in the afternoon that he’d die soon.

On Tuesday, the man wasn’t at day activities. I heard the staff talk about his group home staff having had a scare in the morning, but he was still alive. In the afternoon, I heard them talking about palliative care. By late afternoon, when us clients werre ready to leave, I heard that he’d passed. For those who don’t know, my day activities group is for people with severe intellectual disabilities, so i’m the only one who understands the conversations staff have among themselves basically.

On Wednesday, the other clients were told that this man had died. Most still don’t fully understand, but some have made beautiful drawings in his memory that will be given to his family on Monday. Near the center’s front door is a table with (electric) candles, a picture of the man and all the drawings. I decided to make a butterfly soap for it. I made it on Wednesday afternoon with my support coordinator. It turned out great, a beautiful lavender blue with lavender fragrance oil.

On Thursday, I was off from day activities and I spent the morning in bed. It didn’t really feel good, but I had nothing planned for the day except for horseback riding at 4:30PM. That was a great experience. I rode Aagje, a fjord horse with long hair (which is unusual for this breed).

Today, I showed my day activities staff the butterfly soap I’d made and placed it on the client’s remembrance table. We tried to do day activities as usual as much as possible. We walked to the marketplace in the morning. In the afternoon, when I went for a short walk with the day activities coordinator, I told her I wanted to ask a rude question. I wanted to ask whether, now that this other client had died, I could take his place at day activities on Thursdays. I still feel pretty awkward having asked this, but she understood that, if I waited a while, they might’ve gotten a new application. I E-mailed my support coordinator on this issue too.

Early this week, I got an E-mail from my support coordinator forwarding the termination letter from the Center for Consultation and Expertise. I didn’t understand this, as the consultant had offered to be my contact for the long-term care funding agency. Apparently, she still is somehow. I really hope I hear from that agency soon. My support coordinator did E-mail the local authority’s social consultant, who is in charge of my community care funding, to extend my funding for two months as we wait for long-term care to kick in.

Right now I feel… numb? I was a bit dissociated this afternoon, as my day activities staff were discusing clients’ severe challenging behaviors (not current fellow clients of mine). I remembered my time on the locked psychiatric unit, where I was often threatened with seclusion for problem behaviors and was in fact secluded or restrained a few times. It felt good disclosing this to my staff, but I did feel a bit awkward.

Now I’m waiting for my husband to get home from work. He’s going to bring French fries and snacks. I look forward to that.

I am linking up with Word of the Week. I choose “loss” as my word of the week in my fellow client’s memory.

Panicked Ramble

Hi, I’m Carol. I struggle a lot with our autism. I’m a little panicky at the moment. First of all, I woke up with terrible pain in my left shoulder. It’s been bothering me alll day. We finally took an ibuprofen when we got home from day activities at 5PM. It’s better now, but still bad.

This morning, I overheard the staff at day activities talking about a possible new client joining our group. I immediately worried that this’d mean I’d be kicked out. Not because they need the place (or maybe because of that too), but maybe if my challenging behavior worsens as a response to the staff being busier. That’s what happened at my previous day activities. Then again, they had three new clients join the group in a matter of weeks.

Moreover, we had a Christmas meal at day activities today. This meant my day was different from the usual Tuesday. One of the staff at my group had to help clean up after the meal, so she was in the kitchen most of the afternoon.

Then the staff started talking about day activities next week. They’re closed on Monday but open on thursday and Friday. Then, only six of us will be at the center, which really isn’t enough to justify staff being there. They said that the center normally closes if fewer than ten clients will be there. We want so badly to attend day activities and I somehow understood they’re considering closing the center next week. The staff reassured me, saying they had to set this rule for next year but for now the center will be open.

Still, when I got home, the whole thing overwhelmed me. I started seeing images in my mind of myself with worsening challenging behavior. I felt unsafe at home alone and rejected too. Like, they kicked us out of the independence training home in 2007 and out of the institution last year because of our behavior. Rather than giving us more care when we needed it, they gave us less. Same with the old day activities place. I really hope we can somehow find us suitable supported housing, but I’m so scared that no place wants me. I finally called the on-call nurse at the psych hospital and had a chat with her. That was good, but I feel guilty about having called, because my team say I really shouldn’t need the prescription phone call anymore.

Leaving the Path Paved for Me

Today’s Finish the Sentence Friday is a stream-of-conscious writing exercise on the prompt of “leave”. I have not been inspired to write much lately, not even snippets that aren’t “blog-worthy” but that I could’ve published here anyway. Yet this prompt immediately turned on a lightbulb in my head.

Yesterday, I made the decision to schedule an appointment with the care consultant for the agency I receive home support and day activities from. We’re going to discuss my options regarding going into supported housing. There I said it and now I’m hoping my parents never read this blog.

Nothing has been decided yet, except for the appointment with the care consultant having been set for October 4. It isn’t certain that I can get funding for supported housing. I’m not getting my hopes up too high, as there are huge budget cuts to long-term care for people with lifelong disabilities, which is the path I want to go. I could also go the community support route, where I could go into supported housing for the mentally ill temporarily. That most likely wouldn’t be of much benefit, as it’s heavily focused on “rehabilitation”.

However, assuming I can get into supported housing one way or the other, this will mean I’m leaving my husband. Not as in divorce, as living together is not required to be married here in the Netherlands and my husband has said he doesn’t want to leave me. In fact, he supports me every step of the way.

It also, however, means leaving my passing-for-non-disabled self behind. It means leaving the path paved for me by my parents (and my last institution psychologist). I’ll be a huge disappointment to them. I have been thinking of how to break the news to my parents. Thankfully, I can wait with that until the point, should it come, where I’m actually moving.

Since I scheduled the appointment yesterday, I’ve been flooded with memories. I told my support staff at day activities and that got me talking about the time I lived independently in 2007. At the time, I considered getting into supported housing too, but my support coordinator said I couldn’t be in their supported housing with my challenging behavior. This may be the case with my current agency’s supported housing too. That’s one advantage of independent living. After all, no matter how much I struggle in independent living, my husband won’t kick me out for needing too much care.