The Wednesday HodgePodge (September 7, 2022)

Hi everyone. It’s Wednesday again, so it’s time for the Wednesday HodgePodge. Here are Joyce’s questions and my answers.

1. Tell us a little bit about the best birthday you’ve ever had.
I honestly can’t decide on any specific one. Birthdays were always stressful when I was a child, but they’ve gotten easier as I got older. Now that I think of it, I’m going to pick last year’s, my 35th, because it wasn’t as loaded as the ones before and I got some of the loveliest presents.

2. In what way(s) have you changed in the last five years?
Five years ago, I was struggling greatly living with my husband. I had already had my first major mental crisis, but not my second or third and I was still trying to uphold the image of myself as the successful psych survivor. As such, the most important way in which I’ve changed over the past five years, is having learned to embrace myself with all my limitations, rather than wanting to prove my capabilities to the world. It’s a delicate balancing act and sometimes I wonder if I’ve swung too far to the dependent side of things. I’m trying to reclaim some of my fierce self-reliance indeed, without losing the self-determination I didn’t have five years ago. For those who don’t know, living with my husband rather than in a care facility wasn’t my choice; instead, I had been kicked out of a psych hospital in May of 2017 for allegedly misusing care. I am so glad my community support team and I eventually came to the conclusion that I needed to be in long-term care after all. Now I need to find the balance between passive dependency and stubborn self-reliance.

3. What’s your favorite thing about the street on which you live?
The fact that the care facility is right at the end of the street, overseeing the meadow, so it’s relatively quiet.

4. The Hodgepodge lands on National Beer Day…are you a beer drinker? What’s a recipe you make that lists beer as one of the ingredients? If not beer, how about yeast?
I can’t stand beer, doesn’t matter whether it’s alcohol in it. I honestly don’t know any recipe with beer or yeast in it. That being said, my father used to make bread from scratch, including “waking” the yeast for the dough. That expression always made me laugh.

5. As I grow older I would like to be a woman (or man, if there are any men in the HP today) who…
Practises expressing gratitude everyday.

6. Insert your own random thought here.
Speaking of my answer to #2, I had an interesting conversation with the student staff today. I have as soon as I came here expressed that I’d prefer not to be helped with my personal care by male staff. When discussing this with this student staff a few days ago, I said that I could try to do my personal care myself if there’s no female staff available. This staff either understood this to mean that, if he works on my side of the home, I’ll do my personal care by myself, or I thought he understood it this way. Rather, I had meant it if no female staff are available at all.

It may seem weird that, if I can do my personal care by myself if absolutely necessary, I may want help with it sometimes or most times. The reason has to do with the fact that doing my personal care costs me a lot of energy without giving me much satisfaction at all. I don’t personally feel that self-reliance is an end goal in itself, so I get help with my personal care. Thankfully, my staff agree. Then again, I can’t expect there to always be a female staff in the home, so when there isn’t, I make the choice to invest the extra energy into my personal care in order to preserve my dignity as a married woman.

A Courageous Choice

I was a shy, withdrawn teen who was loyal to my parents even though they didn’t have my best interest in mind. I mean, if they’d had their way, I’d have gone to university and lived on my own straight out of high school in 2005, even though I could barely take care of myself. That had been their attitude towards raising “responsible” children ever since I was a little girl: if I couldn’t – or in their opinion was too strong-willed to – learn a skill as a child, I’d learn it as an adult by myself. Or not. In any case, there was no safety net.

Though I do indeed feel that children benefit from learning by doing themselves, this was not how it worked in my family. I don’t blame my parents for not having the patience to teach me self-care skills, given that I got frustrated very easily, but I do hold them responsible for not having accepted the help they could have gotten. Though it might not have led to me becoming as independent as they’d want me to be, my current situation is about as far from that goal as can be. Then again, my parents hold me responsible for that. And I, in a sense, do too.

I was reminded of this situation when I read a journaling prompt that asked me to reflect on a courageous choice I made as a teen that’s still helping me today. I immediately thought of the choice to go into blindness training rather than straight to university once I’d graduated high school. Though this decision itself did not by far lead to the self-awareness I needed to try to get into long-term care, it was my first step into the care system. And, of course, as my parents predicted, I never fully got out.

Back in June of 2005, when I accepted the blindness training center psychologist’s offer to put me on the waiting list for the basic training program, I still had my head deep in the sand about my lack of independence skills. The psychologist did not. He suggested I go to a training home after finishing the program. He probably knew that, like many young people blind from birth, and especially those from families like mine who value academics over life skills, I wouldn’t be ready to move into independent living after a four-month, basic program. I wasn’t. I never would be. Till this day, I’m not sure whether this is my blindness or my autism or my mild cerebral palsy or what. I believe strongly that, with multiple disabilities, the whole is more than the sum of its parts. Thankfully, the authorities approving my long-term care funding, eventually agreed.

Confronting My Dependent Shadow Side

This afternoon, I downloaded a small collection of shadow work-based journaling prompts. One of them is to write about the time I felt most offended by someone. What did that person say or do? And more important, what was my reaction? I am encouraged to focus mostly on the emotions involved rather than the mere facts.

The first thing that came to mind, was my former psychologist diagnosing me with dependent personality disorder. This, though, didn’t really offend me: it scared me. After all, she claimed not just that I was being passive and clingy, as people with DPD often are, but that I was misusing care. I, obviously, disagreed and feared losing my care because of her diagnosis. This, indeed, did happen about six months later.

The moment I felt most offended though, was the moment in June of last year when my husband said he thought I might have DPD. He may’ve forgotten that this was the exact diagnosis my psychologist had given me in order to kick me out of the psych hospital, since he did not propose I move back in with him. His reasoning was, however, the fact that, even with one-on-one support for most of the day, I still struggle.

I felt intensely triggered and scared again, but also angry. However, I wasn’t necessarily angry with him, but with my own dependent side. After all, maybe, just maybe, he is right indeed.

Deep down, I do know it is crazy to want – to feel I need – one-on-one attention all of the time. I don’t even want it, truthfully. Right now, I’m very content being by myself. But then again, why do I feel so anxious some of the time when my staff leave? Why can’t I make simple choices? Why do I need my husband to take responsibility for any major parts of my life? These are telltale DPD criteria!

I am not even scared of the diagnosis itself. Diagnoses are just labels. But I am scared of losing the care I have now, like I did in 2017. And then the little voice, my independent part, is telling me that I coped just fine. I mean, I know I took two overdoses of medication during my first six months of living with my husband, but wasn’t that just manipulation?

Couldn’t I have a much better, much richer life if I unlearned this intense fear of needing to fend for myself? Yes, yes, yes, I could! But does unlearning this fear mean being given a kick in the behind and being forced to live with my husband again? Maybe there are steps in between. Like, today I poured myself a glass of fruit-infused water, spilling a little over myself, but I did it anyway. I felt intense anxiety, because I knew my staff noticed and maybe she’s going to expect me to always be able to do this independently. Then again, so what? Then the worst thing that could happen is I can’t get fruit-infused water if this staff is working my shift and I don’t feel like pouring it myself. Is that so bad after all? And just to say, the staff didn’t even tell me to pour the drink myself. I just noticed the bottle was in front of me and I decided to try to do it. I could’ve asked her to pour the water for me, in which case she’d likely have done so. She is a staff who generally encourages independence, which sets off my demand avoidance. However, the fact that I not only did something independently I wouldn’t normally have done, but took the initiative rather than being encouraged (read: pushed), gave me a confidence boost.

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.