Attention Is a Valid Human Need

Posted on by Astrid

Hi everyone. One of the prompts for this week’s Writer’s Workshop is to write a post based on the word “attention”.

This immediately brings back a flood of memories of my time at the intensive support home. On one particular occasion – but I’m pretty sure there were many more -, a staff said to her coworker about a client in crisis: “It’s all attention.” She said “attention” in English, not Dutch, apparently hoping the client in crisis or his fellow clients (including me) wouldn’t understand. One of my fellow clients immediately chimed in by translating her comment into Dutch.

The idea that challenging behavior is “for attention” is often not entirely based in truth. However, even if it is, attention is a valid human need. And especially at the intensive support home, clients routinely didn’t get it.

You might think we did get more than enough attention, since the staff/client ratio is 1:2 to 1:3 at this home. But more often than not, staff were doing stuff on their phones, chatting to each other and on at least one occasion, I caught two staff playing a board game together and the third cheering for them. That third person was my one-on-one for the moment, but, because I was also playing a game with a fellow client, the staff thought it not necessary to pay attention to me. Then when I started showing signs of distress, he missed them until I ended up in a meltdown, then told me I could’ve said in a calm voice that I wanted to go to my room. Well, guess what? One of my first signs of distress is an inability to communicate effectively.

On another occasion, the fellow client about whom the staff felt the need to communicate his “attention-seeking” in English, was having an outburst again. I told my one-on-one for the moment that I could see why, because he’d been left to his own resources, often locked in his room, for most of the day. My one-on-one told me he’d had more than enough attention, since he had been having a cup of coffee with the client and had created his day schedule. As if a fifteen-minute coffee chat means you can be left alone for the rest of the day.

Remember, I and my fellow clients have a developmental disability. Most of us cannot participate in everyday conversations among non-disabled people, so when the staff are chatting to each other, most of us will feel left out of the loop. And just because staff are in the same room with us, doesn’t mean they’re attending to our needs, as my example of the board game illustrates. At that point, I needed someone to pay attention to the subtle signs that I was going to land in a meltdown.

And like I said, attention is a normal human need. Staff aren’t telling each other that they’ve had more than enough attention because they’ve had a break (that usually lasts for 45 minutes, four times a day) together. In my opinion, honestly, they should.

#WeekendCoffeeShare (March 16, 2024)

Posted on by Astrid

Hi everyone. Oh my, I don’t think I’ve ever gone this long without blogging since starting this blog, have I? I’m really struggling and today, I don’t really want to do a gratitude post, so a regular #WeekendCoffeeShare will have to do. I’ve long had my last cup of coffee for the day, since it’s 9:30PM. I’ve also had my soft drink, Dubbelfrisss. I’m afraid I’ve only got water to offer you now, but oh well. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that my burns, which I told you about in my post last week, are almost completely healed. I no longer need them dressed and just need a cream put on them to keep the skin from getting too dry. As a result, I’ve been able to walk regularly again too, meeting my movement goal on my Apple Watch each day this week except today so far.

If we were having coffee, I’d tell you that I had a really rough week this week otherwise. I’ve really been struggling with the fact that staff are to adhere strictly to my day schedule and to make up for every minute I come out of my unsupported time in distress by showing up at my next support moment later. The fact that it’s literally by the minute, wasn’t a misinterpretation, it turned out today when I talked to my support coordinator. It’s been causing me intense distress though, which has gotten me to send staff away with ther “freakin’ stopwatch”, even though when I’m in severe distress staff are supposed to stay with me (and I’m usually open to them making up for it later on when I’m calm). The compensatory system (staff having to make up for every minute of extra support minutes) only applies when I’m in distress and not when I need support during wound care or a pedicure or whatever. The reason, it turned out, is the fact that I’ve been needing more suppport lately and the staff fear my one-on-one will need to be increased, which they say they don’t mind for their own sake (assuming it gets approved) but would think is a pity for me. They seem to think, but I wasn’t to look at it that way, that my distress is attention-seeking.

Honestly, I can see their point, in that I’ve needed more support lately, but my care needs fluctuate and will probably go down again. Besides, they never write it down when I agree staff can leave at 5:15PM rather than 5:30PM to put their pizza in the oven, when I have a lie down for 30 minutes during my one-on-one or whatever, essentially cutting my one-on-one back. I don’t care about those 15-30 minutes, but staff have agreed to cut back on my support if I’m even a few minutes in distress outside of my one-on-one. And it’s not because they have other duties, because like I said if I have a 30-minute pedicure, that doesn’t get compensated for. It’s essentially to encourage “crying it out”, which has actually had the opposite effect.

Like I said, once I’ve calmed down, I’m quite open to staff having to compensate for the extra time they’ve spent with me, because I can see they need to attend to the other clients too. However, having this compensatory system hanging over me and it being strictly by the minute, causes me even more severe distress. I’ve also been ruminating over it at night, leading to night-time agitation and the night staff needing to come out to me. Wednesday night, they even had to come out to me three times. After that, I now have a PRN sleeping pill until Monday per my and my mother-in-law’s request. I only took it Thursday night. It’s a short-acting benzodiazepine, which had a slight effect when I took it. However, I honestly feel I should be able to cope without it now.

If we were having coffee, I’d share that I was two weeks on my new, decreased antipsychotic dosage yesterday and feel a lot more alert. According to my former mental health agency, the first two weeks don’t count with respect to behavior and honestly I’m noticing I’m slightly less irritable than I was until Wednesday. It might have been a night of relatively restful sleep or it might’ve been the fact that the staff who worked over the past few days weren’t stopwatch people. I certainly don’t want to go back on my old dosage.

If we were having coffee, I’d end on a positive note by telling you that my mother-in-law visited me on Tuesday. She was able to bring me the package of crafting supplies I’d ordered a few weeks ago. I ordered a few clear stamps (to be used with polymer clay in my case), a mold for polymer clay, precision paintbrushes and a couple of earring cutters.

Don’t Leave Me Alone! #SoCS

Posted on by Astrid

I am one of those autistic people who doesn’t like to be left alone. That is, I do need a significant amount of alone time, but it has to be on my terms. That might seem weird or normal, I don’t even know. I mean, I’m used to it being seen as weird here at the care home. Staff see it as a sign that I crave attention somehow. Which, even if it were true, well, attention is a normal human need.

I am not sure where I’m headed with this post, but I often feel like a fake autistic for feeling like I don’t want or need to be left alone when I’m in distress. Probably because my former psychologist at the psychiatric hospital used it as a reason to diagnose me with dependent personality disorder. Which I might have after all, I’m not sure. Then again, the treatment for that isn’t to leave someone to their own resources just like that.

I often have this statement in my head: “Don’t leave me alone!” It is cried out, in my head, by a child’s voice. I am pretty sure it is from a book and in Dutch, it sounds different, but I’m writing it like this here for the purposes of this post. Don’t leave me alone. Never leave me alone. Well, people always will. That’s life.

This post was written for Stream of Consciousness Saturday for this week. The prompt is “left alone”.

Self-Injurious, Aggressive and Otherwise Challenging Behavior in People With Intellectual or Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter S post in the #AtoZChallenge. Today, I want to talk about self-harming, aggression and other challenging behavior in people with intellectual and developmental disabilities.

Some people erroneously believe that challenging behavior is an intrinsic part of being intellectually disabled. It isn’t. Neither are self-injurious or aggressive behaviors an intrinsic part of autism. These behaviors, however, do happen more often among people with intellectual and developmental disabilities than among non-disabled people.

The causes and reinforcing factors of challenging behavior are often complex. And though I mention them in one sentence, no, a reinforcing factor is not the same as a cause. Furthermore, if removing a reinforcing factor seems effective at reducing or eliminating the undesired behavior, this does not mean the problem is all solved. After all, especially people with intellectual and developmental disabilities who are at a lower emotional level of development or who struggle with communication are at risk of suffering in silence.

It may be tempting to presume motivators behind challenging behavior that are commonly believed to apply to typically-developing young children, such as attention or “getting their way”. Presuming these motivators, even correctly, is not taking into account the fact that people with intellectual and developmental disabilities are firstly not (necessarily) young children. Secondly, you need to realize that, like all people, they have a need for autonomy and attention and many, especially those living in institutions, are heavily lacking in both.

There are, of course, many other contributing factors to challenging behavior. For example, physical discomfort or pain may be a factor for some, especially those with profound intellectual or multiple disabilities. Others may have experienced trauma and struggle with attachment. I for one have relatively mild attachment issues (at least as apparent in my behavior) compared to some of my fellow clients, hence why I always get stuck with the temp workers. This of late has been causing me a lot of distress and has led to significant challenging behavior, which unfortunately for me isn’t significant enough to warrant any changes. Then again, if it did, those changes might well constitute restrictive measures.

#WeekendCoffeeShare (January 30, 2022)

Posted on by Astrid

Hi everyone. I’m extremely late joining in with #WeekendCoffeeShare this week. I already had all my coffee for the weekend, in fact, so the title of my blog post is rather off, but oh well. The linky’s still open for another nine hours, so I’m going to take advantage of it and participate. Let’s have a drink and let’s catch up.

If we were having coffee, I’d start by sharing that the weather is slightly better than it was last week. It’s warmed up a bit, at least. That being said, we’re supposed to get rain all of next week, so I’m probably still not going out much.

If we were having coffee, I’d tell you that today is my father-in-law’s 65th birthday. Retirement age is now 67 here I believe, so it’s not significant in that sense. At least, my father-in-law is keeping his dentistry practice until he’s 67. My husband did buy him a beer and I sent him a text, but that’s as far as birthday celebrations go, I think.

If we were having coffee, I’d share that I’ve been creating some quite interesting polymer clay things lately. One is a flower fairy, another a kawaii pig pendant and another a daisy. That daisy didn’t turn out as good as I’d like, but my husband did say he liked the fairy. I haven’t baked any of the things yet.

If we were having coffee, I’d use the rest of my post to whine about how my anxiety is still through the roof. I hardly slept at all Friday night. Then yesterday, I had an okay day until in the evening a fellow client started screeching. I tried to get the staff’s attention but they wouldn’t react until I grabbed the other client by the arm, then only told me that said client, who is non-speaking, couldn’t help her behavior. I’ve been feeling extremely unsettled and unsafe in my current care home ever since. I am all the more triggered because staff keep repeating that I’ll likely feel unsafe in any other place. They probably say it to mean every other place has its drawbacks too, but I take it to mean that my anxiety is my problem and I’m the one who needs to change so I just need to suck it up and stop complaining.

I’ve also been thinking about how I had fewer crises when living with my husband than now that I live in the care facility. Isn’t this telling? I mean, doesn’t this mean that I should get a kick in the butt and go back to living semi-independently? Granted, I had far fewer moments of joy too, but I’m not sure that matters if I was less dependent back then. Isn’t the goal independence, after all? Eek, that scares me, and that in turn should be quite telling, right? I’m probably just one giant mess of a dependent, manipulative, attention-seeking monster.

Okay, if we were having coffee, I’d end on a positive note and say I had a delicious tuna wrap today when going to the Subway drive-through for lunch with my husband. I also had one half of a Bueno candy bar, as my husband had bought it at the supermarket. I originally wanted to refuse as it isn’t on my food plan, but the dietitian had said exceptions are okay.

How have you been?

Suicidal Ideation in Childhood: Some Reflections

Posted on by Astrid

Earlier today, someone online asked a group of autistic women about suicidal ideation in childhood and at what age it started. It is common knowledge that depression and suicidality are near-universal among autistics. After all, we are taught, be it consciously or not, that our autistic way of expressing ourselves is unacceptable.

I remember my first autistic burnout at age five. I don’t have clear, verbal memories of the experience, but my inner five-year-old might and I do experience somatic and emotional flashbacks. The family story about the event is that I was ill with the flu. At the same time (coincidentally or not) my parents were making arrangements for me to start at the school for the visually impaired. I started in mid-May, before the end of the school year.

At the time, I wasn’t actively suicidal as far as I’m aware. I started having those thoughts when I was around age seven. I have a vague memory of telling my mother that I wanted to die sometime around that age.

Interestingly, I never made suicide attempts. Even the times I planned my “final day alive”, I never had any idea how I was going to go about actually doing it. This fact was later used to “prove” that I wasn’t serious.

I mean, when I was 21 and admitted to the psych unit, my parents came to tell the psychiatrist that I’d threatened suicide ever since I was seven-years-old, almost adding triumphantly: “See, and here she is, alive!” They said I just wanted attention.

Then again, is it somehow bad that I, deep down, didn’t really want to die? I just didn’t see any alternative. Of course I didn’t want to die by suicide. I imagine at least most people don’t really want to; instead, they want a better life. But I couldn’t get that at that time or so I thought. Does that make me a bad person? I don’t think so.

It’s so sad that, at least in my family, the red flag of long-time, severe suffering was ignored as a sign of “attention-seeking”. As if a seven-year-old even has the capacity to use suicide threats to manipulate their parents for mere attention without anything else going on with them.

If I Have a Good Day…: Ramblings on Fear of Joy

Posted on by Astrid

Today is a slightly better day than yesterday. I actually managed to make a soap for a staff and also go on walks. I even reached my daily step goal! In addition, I have been exploring my faith.

Still, fear of joy is haunting me. Until a few years ago, I never knew it was a thing. That is, I had read about it on a fellow trauma survivor’s website. That was many years ago already, but I never quite understood what it meant. I never realized I experience it. And yet I do.

I think this fear is intertwined with my core belief that, if people truly knew me, they’d abandon me. It is the exact opposite, in a way, and yet it’s similar too. I mean, if people abandon me regardless, why bother trying my best?

Deep down, I feel that people are going to abandon me if they find out how wicked I am. I also, conversely, feel that people are going to abandon me if they think I can cope fine on my own. And these different views are not mutually exclusive. After all, my psychologist at the mental hospital thought I was bad and manipulative, and yet she also thought I would cope fine on my own.

My belief that people don’t see the real me, the wicked, attention-seeking, manipulative me, makes me want to disappear. It makes me feel ashamed of my needs. But it also causes intense anger, because at the core maybe I want to prove myself right.

On the other hand, my belief that people don’t see my genuine need and think I can cope fine on my own, leads to actual care-seeking behavior. It’s not the same as attention-seeking, but maybe in my current context of a care facility, it’s worse.

I have a sense that both of these beliefs cause me to fear joy. On Sunday, I felt abandoned by the staff. Then on Monday, I was trying to “prove” that I’m more needy and hence more wicked than my staff believe. Today though, I’m feeling slightly better, but this scares me. It scares me because I’m convinced I’ll be expected to cope on my own if I’m managing.

Maybe that psychologist was right after all that I have dependency issues. I worry the staff will agree at some point and this in fact reinforces care-seeking behaviors. Which, of course, is counterproductive.

A Mixed Monday

Posted on by Astrid

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 too 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.

Working On Us Prompt: Suicide and Suicidal Thoughts

Posted on by Astrid

I have lots of things I want to write about, and yet all I do is sit behind my computer and try to figure out which feed reader would be best (or least bad) on my Windows PC. I’ve yet to make a final decision, but I’m frustrated with it for now.

I’m joining in with Beckie’s Working On Us Prompt again. This time, the topic of discussion is suicidal ideation and suicide attempts.

As regular readers of my blog know, I do experience suicidal ideation on a regular basis. I have in fact lived with re-occurring suicidal ideation ever since the age of seven or so. My most severe suicidal break however was in 2007, when I was 21. Ironically, my parents thought that, since I had had suicidal thoughts on and off ever since age seven, I must not be serious and it all must just be “for attention”. Well, let me be very clear on this: suicidal thoughts are no fun and, if they ever happen “for attention”, there probably is a very good reason the sufferer is seeking attention.

I had never attempted suicide when I had my break in 2007. This break too involved “just” threats. However, it doesn’t mean I wasn’t genuinely struggling. I genuinely thought death was my only option. Same when, in 2002, I wrote a goodbye letter but had no idea how to go about actually taking the final step. People commonly say that, if you truly want to end it all, you will and, if a suicide attempt fails, it must not have been serious. That’s not necessarily true. People die from impulsive suicide attempts and people who’ve tried to kill themselves many times and are adamant they want to die, may still be alive.

In 2007, I was hospitalized, because my suicidal ideation was so serious that I needed help for it. That is, because I was suicidal due to be overwhelmed living independently and going to university, it helpd already to be taken out of the situation. That doesn’t mean my suicidal thoughts were gone immediately. That took at least three months and they’ve returned frequently since.

I did not actually get much help overcoming my suicidal thoughts. When I was on the locked unit, I had no therapy and no medication other than PRN oxazepam. I started therapy at the resocialization unit, but it was mostly just supportive.
In 2017, after my discharge from the psychiatric hospital, I made two suicide attempts by overdosing on medication. I am hesitant to call them suicide attempts, because both were impulsive and I’m not sure my intent was to die. I was most definitely depressed though. My suicide attempts were “for attention”, yes, but I had a very valid reason to seek attention.