Care Needs

Posted on by Astrid

Last year, when I was first feeling like I was falling apart at my current care home, I wrote a list of my “needs” and E-mailed it to my assigned staff and support coordinator. I heavily watered down my wishes, thinking a need isn’t the same as a want and whatever comes out of a discussion of my needs, should be working for everybody involved, not just me. For example, I asked for more clarity on what activities I’d be doing each day and offered to use my whiteboard, but also said staff could just ask me what I thought I’d be doing and help me find a suitable activity; this last one was then put into my day schedule, ie. “Staff upon leaving asks Astrid what she’s going to do next”. Needless to say, this didn’t work for me, being autistic, at all, as it leaves the same amount of unstructured chaos as the old wording, which was simply that I had “alone time”, did.

Now, more than a year later and with the Center for Consultation and Expertise involved to help me and my staff improve my quality of life, I’ve written another list, but this time, it doesn’t offer solutions for my unmet needs; rather, it’s simply a list of problems I encounter at this home. In a way, I feel that being solution-focused should be more constructive, but then again this time I have the consultant to think up possible solutions to come closer to meeting my needs.

This post was written for the Six Sentence Story linky, for which the prompt this week is “need”.

Poem: Always Eager

Posted on by Astrid

A very hungry caterpillar,
Never enough, always too much
I consume…

Insatiable I feel,
Always eager
For more…

Will I ever be content?
Feeel that my needs are met?
Or will I never…

Wrap myself in a cocoon,
And wait
Patiently…

For myself
To emerge
A beautiful butterfly…

This poem was written for dVerse’s Poetics, for which the prompt is “cycles of life”. I often use the metaphor of the very hungry caterpillar as a way to describe my perpetual criticism of the care system. In reality though, I think that, when my needs are met, I could evolve like a caterpillar transforming into a beautiful butterfly. Or maybe I’d turn into a moth, who knows?

The Most Important Life Lesson

Posted on by Astrid

Hi everyone. Today Sadje asks us in her Sunday Poser to share life lessons we’ve learned. I was pretty sure I’d done a post on the most important lesson I’d learned in life some years ago, so went to look and indeed, I wrote about this topic in 2018. Wow, how time has flown!

And it doesn’t surprise me that, when I read Sadje’s question, my initial thought was to share the exact same lesson I shared back then: that it’s important to stay true to yourself. Today though, I’m going to make it even bolder: I am the most important person in my life. That sounds selfish, right? But guess what? Each of us is the most important person in our own life. You can’t live for anyone else, by which I mean no-one else can make you happy. No, not even when you think that someone else does; it’s still your understanding of their love or acceptance that makes you happy.

To word it even more bluntly, if everyone thinks of themself first, no-one will be forgotten. This doesn’t mean we need to be going against moral sensibility or harming other people just because we want it. After all, harming others isn’t in our own best interest in the long run either.

By saying that no-one else can make us happy, I also didn’t mean we don’t need connections. However, no-one else can live our life for us.

I also want to share what learning this life lesson has helped me with since 2018. I still struggle with everyday decisions, but I attribute this to the fact that I often get overwhelmed with them.

I am happy to report that, since indeed landing in a less than supportive environment (ie. the intensive support home) in 2022, I was able to stand up for what I needed. I’m now back in quite a supportive place, but I’m glad I’m still able to advocate for myself. This doesn’t mean that the thought that everyone will ultimately abandon me if I’m myself, is gone. It’s worse than ever, in fact. I still need to work on the idea that, even if they do, that doesn’t mean I’m a bad person.

Exploring “Safe Ground” in a Less Than Optimal Care System

Posted on by Astrid

I’ve been exploring the concept of “safe ground”. This is a buzzword in the long-term care sector, particularly in the care of people with severe challenging behavior. It is used to describe the idea that people are unconditionally accepted in their care homes and will not be kicked out for their behavior.

I’ve been feeling drawn to this idea, because I’ve been kicked out of services, or out of the particular service I used, for my behavior several times.

One video I watched on the topic of “safe ground” explored a care home for the most severely challenging individuals. As in, there are only 24 places in the entire country. I don’t know why I was drawn to this video, because I’m not nearly the most challenging resident on grounds here, let alone among the top 24 of the country. In fact, I would say that at least one of my fellow residents here at my home is more challenging than me.

There are two concepts to unpack here, which may or may not be related. The first is, why do I identify so strongly with the most difficult of clients in the care system when I’m probably somewhere in the middle? The second is, is “safe ground” only the idea that people won’t be kicked out for their behavior, or is it more generally speaking unconditional acceptance of clients with their unique needs?

I’ll explore the second concept now. I think “safe ground” means more than just not kicking out clients, and in this respect, it’s relevant to me. I think it means (or should mean) seeing the unmet needs behind challenging behavior. Seeing the person rather than the client. I still think that, even if I don’t end up being kicked out of here for my behavior, there’s still a world to win here. I am hopeful that, when the things we discussed a few weeks ago at the meeting between my support coordinator, behavior specialist and me, will be implemented, we’ll get close.

That being said, it’s still 2024 and this means no optimal care for anyone. I think one of the things I wish people would admit is that they’re having to deal with a strained system rather than blaming the client for their challenging behavior.

I ran into this yesterday, because there’s yet another change in staff hours, and yet the other support coordinator claimed everyone gets the attention they need. No, that’s not true, or it depends on how you define “need”. After all, most of us do mostly get our needs for physical care met, by which I mean we get dressed, showered and have something to eat. Most of us however are still routinely left to fend for ourselves when we’re struggling emotionally. I and the more challenging fellow client are the lucky exceptions to this rule. Even so, I would not call my care optimal. That isn’t going to happen and that’s sort of okay, but it makes a massive difference whether staff blame me or they blame the system. In other words, are we talking about things we as clients shouldn’t expect or things they cannot offer? The end result is the same, in that we have unmet care needs, but the latter is a lot more empathetic towards us.

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.

Sunny Sunday (November 26, 2023)

Posted on by Astrid

Hi everyone. Today I’m feeling all over the place. It’s been like this for most of the week. I’ve been struggling with lots of unfamiliar staff sent out to do my support and my day schedule being screwed up for various reasons. However, I’m going to focus on the positive. I’m joining in with Sunny Sunday. Like Leigha, I am going to focus on the things I’m grateful for, from the general to the specific. I am using Maslow’s hierarchy of needs as a guide.

1. Physiological needs: Food. Particularly, the fact that we had French fries yesterday (oh wait, that’s not a need). My relatively good physical health. A roof over my head.

2. Safety needs: my financial security. The fact that my staff did try to get me a familiar staff person for my one-on-one at least part of the time (although it was after I’d had an outburst).

3. Love and belonging needs: my spouse, who phoned me this evening despite having a headache. A visit from my mother-in-law on Tuesday.

4. Esteem needs: my new day schedule, which will take effet tomorrow, giving me more time to engage in activities I enjoy. Well, technically it’s not more time in total, but the day schedule is less cut up into small parts, so I’ll have a larger time slot in the afternoon for something like polymer clay.

5. Self-actualization needs: renewed motivation for actually doing something creative. It hasn’t yet formed into something concrete, but I’m working on that.

What are you happy about?

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

Posted on by Astrid

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.

Verbalize Your Needs: Assertiveness as Self-Care #AtoZChallenge

Posted on by Astrid

Welcome to my letter V post in the #AtoZChallenge. Okay, I already posted a V post and originally didn’t want to write another one for this challenge or at least not so soon after posting my earlier post. However, I had a topic in mind already. Today, I’m going to write about using assertiveness as self-care.

Assertiveness is nothing more than sticking up for yourself appropriately. It doesn’t mean aggressively dictating how others need to treat you. Like, I am always reminded of a scene in the first Adrian Mole book by Sue Townsend, in which he desccribes that his mother went to an assertiveness training for women only and started to rigidly divide all household chores evenly between his father, herself and Adrian. Well, that’s not how it works.

Assertiveness also doesn’t mean passively agreeing to everything someone else says even if you don’t. I have a tendency to do that and then to complain to other people about the person’s behavior. That’s passive-aggressive.

In order to resolve interpersonal disagreements, I like the DEAR MAN approach from dialectical behavior therapy. DEAR MAN stands for:

D: Describe. Describe the situation as objectively as you can in order to get on the same page with the other person about what you’re actually talking about.

E: Express. Tell the other person how you feel and what you think. Use “I” statements and take responsibility for your stance.

A: Assert. This is where you verbalize what you need or want or don’t want. Be as clear as you can be. Don’t expect the other person to know what you mean if you’re vague.

Remember, we all have different love languages (which apply to friendships and family relationships too). Say your partner’s main way of expressing love is through kind words, but you prefer physical touch. Then you will consistently feel disappointed if they keep saying “I love you” without touching you. State clearly that you want your partner to hug you more often. COVID-19 permitting, they’ll most likely be happy to do so.

R: Reinforce. This means to reward the other person for their behavior. Sounds weird, right? You know you are not dealing with a 5-year-old who gets candy for eating his veggies. Okay, sometimes you are, but in this post I’m mostly talking about relationships between equals. However, what I mean is simply to focus on the positive you want instead of the negative behavior the other is showing you. Often we tend to react negatively in times of conflict, such as by yelling or threatening or withholding our affection. I definitely do. Instead, express how the other person’s changing behavior makes you feel more appreciated, respected or loved.

M: Mindful. Be present and in the moment. Don’t bring up past grievances. I’m often guilty of bringing past stuff into conflicts.

A: Assertive. Stay calm, make eye contact (if possible), keep an even voice. Don’t shout or threaten. It’s okay to express emotions, but let your words express your needs or wants.

N: Negotiate. Once you’ve done all these previous steps, it’s time to let the other person express their reasons for possibly not changing. You need to listen to these mindfully. If you can’t negotiate or you come to an impasse, it may help to ask the other person how they would react if they were in your situation. If nothing else works, you can always agree to disagree.

Worrying: Will I Be Kicked Out of the Care Facility?

Posted on by Astrid

I have had a lot of dreams in which I was kicked out of the care facility lately. They’re no fun. I don’t know why I have these dreams. I mean, yes, a new client may come to my home, but I didn’t find out about that until today. Besides, my staff say it doesn’t mean I’ll have to leave. After all, there’s still an available room in my home.

Still, it scares me. I worry that, if this other client needs a lot of support, I will not get my needs met. I mean, not because of this other client, but because staff will be busier. Oh my, this sounds incredibly attention-seeking. I don’t want to need more support than I can get.

And what if this other client is very noisy? He’ll most likely be assigned to the other communal room than the one I’m assigned to. However, I think he’ll attend my group at day activities, which is already very crowded and noisy as it is. I was told they had many more clients before I came, but well, then this place wouldn’t have been suitable to me.

I talked about my worries to my former support coordinator on the phone. She told me these are just my thoughts and there’s no reason I’ll have to leave because of this other client. Then again, I didn’t get to elaborate on my worries.

I don’t want to be seen as needing too much. I was often seen as needing too much. Either needing too much or claiming to need more than I got. The two are different. The people at the first day activities I attended with this agency, truly thought I needed one-on-one support most of the time, which isn’t even what I was asking for. The staff on my last psychiatric unit thought I needed little care but was just demanding a lot out of some feeling of inadequacy that was apparently unfounded. Either way, I was asked to leave the place. With the psych ward, things were a little nastier than with the day center, but the result was the same.

I saw the behavior specialist who worked for that first day center today. That fueled my worries even more. I mean, she was extremely supportive, but didn’t really know how to handle my issues either. Then again, she never got to talk to me beyond the one time when she made sure I got transferred from the industrial activities group to the sensory group. That was a good move, but when it didn’t fully work out, I guess the manager stepped in and said he’d been accommodating enough and I would have to leave. That’s what I think will happen here too. I mean, my staff are very accommodating, but what if it isn’t enough? Will we find other solutions? Will I get even more accommodations? Or will I at some point just be kicked out? I’m very unsure and that worries me.