What If I Lose My Care?

Today’s prompt for the Weekly Prompts Wednesday Challenge is fear. More specifically, the organizers ask us to consider whether we ever worry about the “what if’s” of a situation without looking at the positive present. Fear, for me, takes many forms, including post-traumatic stress, in which I relive the past. However, it also includes worrying about the future indeed.

Specifically, I worry about losing my support. Of course, this is a realistic worry in a sense, in that my one-on-one support has only been approved until sometime in late 2023. However, right now it’s only May 2022 and a lot could happen between now and then.

This worry also takes unrealistic forms. For example, sometimes I’m convinced that the psychologist from the psychiatric hospital who diagnosed me with dependent personality disorder to “prove” that I was misusing care, will find out that I’m in long-term care and will report me for care fraud. If she does and if the authorities follow along with her allegation, I will not just lose my one-on-one, but all my long-term care and will essentially be required to move back into independent living with my husband.

In a sense, the fact that this “what if” is my worst fear, does prove sort of that I do have dependent traits. However, dependent personality disorder or dependency in general is not the same as misusing care. After all, I never disputed my psychologist’s claim that I wished to be cared for. What I disputed, is her claim that this wish is unfounded, in that I don’t really need this care.

In a similar fashion, recently I’ve had “what if’s” in my head about moving to another care home. What if the staff there expect me to be much more independent than I am right now? In a sense, one reason I want to move to another care home is to have a better quality of life, a broader perspective. This may include greater independence. But I don’t want to be forced into it.

I am reminded of a question on a personality test I had to fill out for my autism re-assessment back in 2017. The agree/disagree statement went something like this: “Being left behind alone is my worst fear.” I didn’t know how to answer it back then, as I thought at the time that being in serious pain would be worse, so I ticked the “Disagree” box. Then again, at the time, I hadn’t experienced significant time being left to my own resources in at least nine years. Now, I would certainly tick the “Agree” box even though I know it was a red flag for dependent personality disorder. I don’t care.

What if I lose all my care and am left to my own resources? During the same assessment, I had to answer a question about how difficult it would be to stay on my own for a couple of days. I ticked the “Very difficult” box, not the “Impossible” box that I would have ticked now. Then again, if my husband had stocked up on food and I had my computer and phone with me, would it literally be impossible? Hmmm, well… emotionally, yes, it would be.

#WeekendCoffeeShare (January 30, 2022)

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?

Pocket Money Tales

Today’s topic for Throwback Thursday is chores and allowances. Let me share my experiences.

Regarding chores, I could easily be short and sweet: no, I did not have any. Neither did my sister. We were raised with the expectation that we’d leave the house as soon as we graduated high school, but we were hardly taught any of the skills of independence, much less expected to contribute to the household on a regular basis. My sister was occasionally expected to do the dishes once she was about twelve or so. Same probably for me, but my parents quickly decided I took too long, didn’t do it right or made too much of a fuss over it, probably all three.

My sister, who’s non-disabled, somehow managed the skills of independence by observing my parents anyway. I, being blind and multiply-disabled, did not. When I left for the independence training home right after high school, I had virtually no skills necessary for living independently. I am forever grateful I persevered and decided to take this step rather than moving out on my own right away.

Regarding allowances, or pocket money as it was known in our family, the situation was a little more interesting. I got my first pocket money at age seven. I got one guilder a week. A few months later, I’d turn eight and my father promised me I’d get two guilders a week provided I’d stop leaving the lights on in my bedroom when I wasn’t there. The reason being that, if I no longer left the lights on, he would save on electricity and could give me more pocket money. I doubt it’d seriously make a difference of one guilder a week, but I’m not entirely sure he hadn’t possibly calculated it somehow. That’s how he is, after all.

That brings me to my next pocket money story, some eight years later.
I originally couldn’t remember whether we already used euros at the time. Not that it matters for the morale of the story, but I saw the official documentation relevant to this story and now know we already had euros. I must’ve been sixteen and was rather angry because my sister got a higher allowance than I’d gotten at her age, so I now wanted more too. At first, my parents got all defensive, calling me selfish because I was playing the “not fair” card. Then, after both of us at calmed down, my father asked me to write a budget of things I’d need pocket money for. If it was within reason, I’d get what I’d asked for.

I had asked for €10 a week. I created a budget (that’s the “official documentation” I referred to above!) fitting all my personal expenses, including candy, jewelry, memberships to the children’s choir and the political party I was a member of at the time, into this budget. Ultimately, my budget showed I needed €555,60 a year. When my father saw it, he commented that I’d been far too careful to try to fit my budget into what I’d demanded. I particularly remember him saying he couldn’t believe I’d just spend €2,50 a week on candy, for example. And I must admit he was right. My father told me that €100 a month was a more reasonable allowance and so it happened that I got more than twice the amount of pocket money I’d originally fought for!

Were you taught about budgeting as a child?

Life Skills I Struggle With As a Multiply-Disabled Person

Earlier today, Ann Hickman wrote an interesting list of ten life skills she is teaching her autistic teenager. As a teen, I missed out on most of these lessons she mentioned, leading to a big gap in my skills as well as my awareness of them.

Of course, lack of education isn’t the only reason autistics and otherwise disabled people may struggle with life skills. I struggle with many of them due to lack of energy, executive functioning issues and other things.

Today, I am sharing life skills I struggle with and why.

1. Personal hygiene. I remember vividly my sister gave me a deodorant for my fourteenth birthday as a hint. I didn’t get it. I wasn’t taught about hygiene much beyond childhood, but even if I were, I didn’t grasp the concept.

Similarly, because we had a bath at my parents’ house, I didn’t learn to properly shower. I didn’t know until a few years back that you’re supposed to use body wash when showering each time.

Other personal care tasks, I simply cannot do due to my physical limitations. I cannot clip my nails, for instance. I know some other blind people (presumably without physical disabilities) can, but other blind people I know go to the pedicurist for this.

2. Meal preparation. While in the training home, I tried for weeks to learn to put peanut butter or jelly on my bread without success. My mother can’t do it blindfolded either. My father can, but he assembles all his supplies around him in a very structured manner.

To be honest, I never had to prepare my breakfast or lunch before going into the training home, as we didn’t eat breakfast at my parents’ home and my lunch was always packaged by my mother (or I’d eat a sausage roll at the cafeteria).

There are probably ways I could prepare my own meals if I really need to. I mean, when living on my own, I just ate plain bread without toppings. However, I prefer my staff prepare it for me.

3. Cleaning. This is a difficult task for most blind people, but it can be done. I can dust my desk and table with minimal help if I’m reminded to do so. However, I can’t vacuum or mop the floors. I learned both, but with each house having a different way it’s set up, it’s very hard to find my way around it with a mop or vacuum cleaner.

What I struggle with most with respect to cleaning, is remembering how often each task needs to be done and actually organizing them. For example, in the training home, I’d clean the top of the doors each week despite no-one ever touching them. On the other hand, I’d procrastinate about changing my bed sheets, sometimes leaving them on for months.

4. Getting around. Ann mentions navigation for a reason: regardless of high-tech solutions to help people navigate, they still need to learn to use maps or to use public transportation. For me as a blind person, mobility was always more important, as it additionally involved safe white cane travel. I never mastered this, even with seven years of mobility training in special education and many more lessons once out of special ed. I only recently learned that more blind, neurodivergent people struggle with white cane usage.

Currently, I can for the most part move around inside the care home by myself, but I cannot at all get around outside without a sighted guide. My parents used to blame this on lack of motivation. While I am pretty sure this, as well as anxiety, does play a part, it is also about other things. Besides, lack of motivation is not the same as laziness. In my case, it feels as though the activity of independent travel overloads me cognitively to the point where I feel incapacitated.

I am assuming Ann’s son is “just” autistic, whereas I am multiply-disabled: autistic, blind and mildly physically impaired. However, with this article, I want to make it clear that there are many reasons a disabled teen or young adult might struggle with life skills and, for this reason, many different approaches to supporting them.

Keep Calm and Carry On Linking Sunday
loopyloulaura

My Worst Fear

This week, one of Mama Kat’s writing prompts is to share one of your fears. I have a lot of fears and phobias, to be honest. I probably would even meet the criteria for generalized anxiety disorder if it weren’t for my autism, which encompasses a lot of worry in itself already. In fact, when my former psychologist had removed my autism diagnosis, she at one point considered diagnosing me with GAD.

She ended up diagnosing me with dependent personality disorder though. And, as much as I used to fight this diagnosis, it fits in some important ways: being left all alone is probably one of my worst fears.

I obviously didn’t tick that box when filling out the screening questionnaires for my independent second opinion after said psychologist’s diagnosis. I also ticked the box for “very difficult” rather than “impossible” on the WHODAS (assessment of level of disability) question on being on your own for a few days. Obviously, that only got me assigned a lower number on level of disability, not a different diagnosis, but I wasn’t aware of this. Besides, my diagnostician was able to see through my not having ticked that one box, so, though she didn’t diagnose me with DPD, she did recommend I work on my self-confidence.

Whether it means I’m pathologically dependent or not, I don’t care though: I fear being left to my own resources. And to be honest, no amount of kicking me in the butt has helped with this so far. Neither have so many years of independence training and therapy. I guess I just need to live with it. And that’s okay at least as long as the authorities aren’t going to see this as a reason to revoke my access to long-term care.

I mean, it’s not just fear. I fear being left to my own resources because I legitimately have no clue how to live my life independently on a daily basis. I can, with a lot of difficulty, perform most activities of daily living, such as showering, brushing my teeth and getting dressed. I now mostly get help with these, because it costs me a ton of time and energy having to do them on my own. For those saying I used to do these things by myself, I would like to add that this came at a cost to my dental health and physical hygiene. But if I really had to, I probably could do all of this. However, where it comes to housework, I’m pretty much lost. I cannot prepare my own food. Like, when I lived on my own in 2007, I ate bread without toppings because I couldn’t put them onto my bread. I wouldn’t die doing this for a few days, of course, and there the “very difficult” answer on the WHODAS may be correct. But it would be my worst fear come true.

Mama’s Losin’ It

I’d Rather Not Ask

This week’s prompt for #LifeThisWeek is “Questions”. Denyse writes in her original post that she tended to be a question-asker until she was faced with a cancer diagnosis, when she felt too overwhelmed to ask questions. And maybe, I’m assuming here, also a little too self-conscious. She was able to ask some of her questions eventually but even still encounters things she didn’t even know she wanted to know.

I am not a huge question-asker. Like, over the past week, I’ve been asking lots of polymer clay-related questions, but I’ve felt self-conscious each time. I’d rather solve my own problems than ask for help.

Unfortunately, with me being multiply-disabled, that’s often hard. Even when my only recognized disability was blindness, I struggled with asking for help for those things that those who are just blind usually get help with. I’d rather figure things out on my own, only to get frustrated and distressed when things didn’t work out. I considered myself fiercely independent, but I really wasn’t.

As my father at one point said: “You have an issue with only saying when you think people should have helped you.” I realize that’s rather disrespectful indeed, because, well, other people are not mind readers and cannot have guessed that I wanted to ask for help. Then again, I didn’t necessarily want to ask for help.

I’m trying to learn to ask for both explanations and assistance when I need it now, but I often still feel very self-conscious. This happens especially online, where people can’t tell right away that I’m disabled. For example, people in the polymer clay Facebook groups often suggest I watch YouTube videos, so then I feel kind of obligated to say that those won’t work for me as I’m blind. I do tend to say that I’ll ask my support staff for help, because of course I can’t expect a random person online to explain everything in plain text. Each time I feel I have to mention my disabilities though, I feel some of my self-esteem go. I’m not sure that’s justified, but it’s the way it is.

Independence

In last week’s Sunday Poser, Sadje asked what independence means to you. Her question was related to Independence Day in the United States. Of course, one can view independence and freedom in light of one’s national political situation. For example, the Netherlands is a pretty stable democracy. The country has been independent in its current form ever since 1815, though Wikipedia even lists 1648 as the Netherlands’ independence year.

I for one, however, tend to apply independence and freedom much more personally. By independence, I refer to the skills I can do by myself, ie. self-reliance. This includes eating, toileting, dressing myself, writing my blog, etc. But it also includes the skills of self-determination.

I think self-determination is particularly important. By this I mean the ability to know what you want and make it clear in some way or another. Everyone, the disability rights movement assumes, has this capacity. Yes, even people who can’t talk and are labeled as profoundly intellectually disabled. However, it is so commonly overridden by well-meaning family or “helping” professionals.

I remember a client at the first day center with my current care agency for people with intellectual disability I attended. This client had severe cerebral palsy, was profoundly intellectually disabled, couldn’t speak, had epilepsy and was blind. However, somehow, the staff had figured out that bergamot essential oil was her favorite scent.

The same client was also sometimes called “spoiled” when she cried and then was quiet once the staff put a vibrating hose around her body. I’d say she was making known what she wanted. She was using her independence!

With respect to independence as freedom, I, for one, think that self-determination is more important than self-reliance. For example, I get help with my personal care. I myself asked for this after I noticed that it cost me a lot of energy to do it myself. Even though I could, with a lot of verbal instruction, take care of my personal hygiene independently if I really needed to, I decided this isn’t a priority for me. My staff, thankfully, agree.

What is important to you where it comes to independence?

I am also joining MMA StoryTime’s Word of the Day.

Good Enough

Today’s optional prompt word for #LifeThisWeek is “Good”. Denyse takes on a cynical approach to the word, which reminds me of the many degrees of being called “good” I experienced.

In my elementary school years, my parents were in a constant fight with the schools for the blind I attended about my educational needs and my potential. According to the school, I was a good enough student. That’s the literal translation of the words that appeared on my report card often. Sometimes, when I was better than average, just “Good” appeared.
My parents thought I ought to get some more recognition. They thought I was excellent, sublime, a genius.

My schools thought I should be going to their secondary school program, which at the highest level catered to average students. My parents believed I could do far better.

I doubt, to be very honest, that my teachers truly didn’t see that academically, I was above-average. At least some of my teachers must have seen this. However, socially and emotionally, I was significantly behind. This was probably the real reason my schools recommended I continue in special education. My parents disagreed. They felt that I would be overprotected and underestimated in special ed. They might’ve been right. We’ll never know, since my parents took me from educational psychologist to educational psychologist until they had the recommendation for mainstream high level secondary education in their hands.

What I do know, is that I ended up being overestimated and underprotected. My parents would love to deny this and blame the staff in independence training for essentially setting me up for long-term care. Agree to disagree. Then again, we’ll never know, because I didn’t go into independent living and on to university right out of high school.

Sometimes, I wish I was just the average, good enough student that some of my teachers saw me as. Then at least I wouldn’t have to face the enormous challenge of both a high IQ and an emotional level comparable in many ways to an 18-month-old child. Then, I might not be writing blog posts in English, but I also might not need 24-hour care.

Then again, I enjoy writing blog posts. I like my care facility. Life is good enough for me.

New Normal

Earlier today, Stevie Turner wrote a great piece on adjusting to the new normal of serious illness. In her case, it’s cancer. I have so far been able to avoid serious physical illness, but I get the idea of adjusting to a “new normal”.

In 2007, as regular readers may know, I suffered a serious mental health crisis. It was probably autistic burnout, though it got various labels over the years. I was 21 at the time and attending university and living on my own.

In the early months of my psychiatric hospital stay that followed the crisis, I was convinced I could go back to college, university or work and living more or less independently if I just had a little more support. I rejected the first place offered to me because I wouldn’t be allowed to cook in my own apartment. This, looking back, is ridiculous! After all, now, thirteen years later, I live in a group home with 24-hour care. I cannot cook, clean or even do some personal care tasks without help.

Now to be honest, I at the time didn’t have a realistic picture of what living in my own apartment in supported housing would be like. The training home I went to before living independently, had a 1:4 staff/client ratio during most of the day. That’s pretty high and it allowed for staff to help with most household tasks. If I went into supported housing in my own apartment, I’d be expected to clean it all by myself. The fact that I wouldn’t be allowed to cook, was understandable, as there wouldn’t be the staff to supervise me.

Then again, I thought I could handle a low staff/client ratio. It was 1:7 on week days at the resocialization ward and 1:14 on week-ends. I did okay with this. Now, not so much. The staff/client ratio here is 1:6 at the least and I get one-on-one for several hours during the day.

I often look back at myself before my crisis. When I was eighteen, I attended mainstream high school despite being blind. The autism or other issues hadn’t even been diagnosed yet. I coped with classrooms of 30’ish students with just one teacher. Sure, I had meltdowns multiple times a week, sometimes multiple times a day, but I somehow survived. Now, I can barely handle having my coffee in the living room without my one-on-one present to calm me if I start melting down. Oh my, this feels sick. I feel shame admitting this. Yet it’s my new normal. Whether I’m just lazy and manipulative and unwilling to be independent or I’m genuinely unable, it’s the way it is.

I often feel sad when I am reminded of my old life. I often dream that I go back to university. I most likely never will.

That being said, I’m also grateful for what I do have. I am forever grateful that my staff and behavior specialist saw the need for one-on-one. I am grateful whenever I can do a small activity, like this morning I made clay punch-out figures. Back in the psych hospital, I often couldn’t blog even once a week. Now I blog almost everyday.

The most frustrating aspect of my “new normal” is not knowing why. I constantly second-guess myself, wondering if I’m truly such a terribly manipulative attention-seeker. That thought is scary. Worse yet is the fear that this might be some type of neurological thing, that I might actually be deteriorating. There is apparently no reason to think this, but it’s still on my mind. Then again, it is what it is and I’ve got to deal with it.

What Recovery Means to Me

Yesterday, one of the daily word prompts here on WP was Recovery. I didn’t see it till it was already time for me to go to bed, so I’m writing about this word today. Today, I am sharing with you what recovery from my mental health conditions means to me.

First, there are a few things recovery doesn’t mean to me. Recovery isn’t the same as being happy all the time – that’d be an unrealistic goal. It also isn’t the same as independence. I don’t intend on ever living independently again and there are few things with respect to life skills I’d really still want to learn.

Recovery does mean no longer being scared when I’m able to do something independently. Currently, I constantly expect people to overestimate my abilities, so when I can do something independently, I think people will expect me to do it all the time.

Similarly, recovery means no longer being afraid of my feelings, both good and bad. Affect phobia is a thing, you know? I currently tend to dissociate from my feelings a lot. I also often counter joy or sadness with anger, because that’s the easiest emotion for me to express.

Recovery means having a relatively stable sense of self. I don’t necessarily want to integrate all alternate parts of my personality, although it’s okay if it happens spontaneously. We do want to achieve cooperation among ourselves. This also means being able to accept the seemingly opposite sides of me.

Recovery means, as a result of the above, no longer needing to rely on negative coping strategies such as self-harm, rage or impulsive behavior. I will no doubt still have times when I indulge into an unhealthy habit such as overeating or buying stuff I don’t need. That’s okay, since I don’t think total self-control is a realistic goal. I just don’t want to use these as coping skills when feeling overwhelmed, and I no longer want to engage in self-harm at all.

Lastly, recovery means no longer expecting people to abandon me if they know the real me. Currently, I have such a negative self-image that I believe any positive aspects of me are a façade and at the core I’m so wicked no-one should want to be associated with me. Overcoming this is probably the hardest thing to achieve, as expectation of abandonment is such an ingrained thought pattern. I really hope to someday stop seeing myself as one giant manipulator though.

In addition to the word prompt, I am linking up with #LifeThisWeek and #SeniSal.