Alarm Anxiety

Posted on by Astrid

I just came across an interesting concept when reading Pat’s Soapbox Thursday for today: alarm anxiety. Alarm anxiety is the fear of the alarm not going off or of not getting enough sleep before it does. When I read her description, immediately alarm bells (pun intended) went off in my head. This is what I dealt with throughout high school and into university.

When I was at secondary school, I’d compulsively check that my alarm was on. Since my alarm was at the other end of the room and I couldn’t visually check it due to being blind, I had to physically leave my bed to do so. And I’d do so at least thirty times a night. And worry that, by the time I’d finally fall asleep, if my alarm did go off, I’d still sleep through it because I hadn’t had enough sleep. This only happened once in my entire six years of secondary school.

I had other compulsions too, but these are too embarrassing to share here. In general, I’d spend hours engaging in my various rituals at night. I wouldn’t necessarily say I had OCD, as these obsessions and compulsions only affected me at night.

They got a lot worse when I lived independently and went to university. I had to check whether my front door was locked, all non-essential electronics unplugged, window open, heating off, alarm on and I’m pretty sure there’s something I’m forgetting right now. All of the things that needed to be checked, were for a reason, of course. For example, the heating needed to be off in case of a carbon monoxide leak (even though I didn’t have my own boiler) and the window needed to be open so that, if such a leak occurred, the chance of me getting poisoned would be lower.

I’d spend hours upon hours pacing through my apartment checking that these things were as I needed them to be. It was exhausting!

Thankfully, my compulsions left immediately when I was admitted to the psychiatric hospital. Either the fact that a staff member was on the ward at all times, comforted me, or the mere fact of my having been removed from my apartment and its specific triggers, caused me to be able to let go. And, of course, alarm anxiety was no longer a thing, as the staff would wake me. Besides, we weren’t required to be up by a certain time anyway.

My Life Story Isn’t Over Yet

Posted on by Astrid

Hi all. Today I’m joining Tranquil Thursday. This replaces Throwback Thursday while Lauren is dealing with her health issues. This week’s topic is (un)written aspects of our life story.

I am 36. On average, this means I’m about at midlife or slightly before there. This should mean about as much of my life story has been written already as the part that’s still unwritten. I struggle to see it this way though. In my mind, I’m perpetually in end-of-life mode.

Especially since moving to my current care home, I no longer make plans. I blame the chaotic situation here, but I’m not sure that’s all there is to it.

I do look back at a life that has been hard, but it definitely has had its positives. Meeting my husband and getting married is an absolutely amazing thing about my life.

As a teen and young adult, I always wanted to write and publish my autobiography. I obviously never did. It had as its working title “Some former preemies will go to university”, after the title of an article in the newspaper my parents read in 2004. The article was about giving preemies born at 24 weeks gestation a chance at active treatment. The neonatologist arguing for this said that some preemies will later go to university. In other words, they’ll prove their worthiness of having been treated actively.

As regular readers of this blog will know, I received active treatment as a preemie too, even though my parents weren’t completely sure I should. I did, indeed, at some point go to university. And failed miserably. But I did sort of prove my worth. Or did I?

My life story isn’t over yet. I might indeed someday be relatively successful at life, whatever that may be. Or I might deteriorate even further than I am now. Then again, everyone deteriorates in old age. And if you need to have had a college degree and worked for 40’ish years before that in order to prove your life is worth it, human values are rather distorted.

Advice I’d Give My Younger Self

Posted on by Astrid

In today’s Sunday Poser, Sadje asks what advice you’d give your younger self. Like in her case, for me it would be different depending on my age.

For example, I could have advised my twelve-year-old self not to be so loyal to her parents’wish to have her go to mainstream grammar school. However, rebellion in a young adolescent is rarely seen as a positive thing and even much less taken seriously. Preteens are expected to be loyal to their parents.

Besides, as someone who had hardly any social contact outside of the home, I didn’t know what was “normal” other than what I saw in the house – which in hindsight was far from normal.

For this reason, I am not really sure what advice to give my childhood self other than to savor the few friendships she did have.

To my teenage self, I would give the advice of standing up for herself more but in a kind way. Then again, this is basically the advice I’d give any younger version of myself and even present-day me, but I have little idea of how to go about actually doing it. I mean, I feel like I’m a doormat that can be walked over and a bed of nails at the same time.

I wish I could give myself the advice not to let others make decisions for me, but the two times I sort of made the decision to move somewhere on my own initiative, both went horribly wrong: my move to the psych hospital in Wolfheze in 2013 and my move to my current care home. For this reason, I’m still unsure I can trust my own decision-making. In truth, of course, I was misinformed in the latter case and not given enough time to process the decision in the former, so it’s not entirely my fault.

I guess, after all, there’s one piece of advice I’d give my younger self. It’d be for my nineteen-year-old self in April of 2006, when my parents threatened to abandon me because I was delaying going to university for another year in order to prolong my training home stay. The advice I’d give her is to let them have their way and not allow the training home coordinator to mediate. This, after all, led to the training home being pressured to require me to live completely independently and go to university after completing the program, something I never even wanted.

I know it’d take immense courage for me at that age to be disloyal to my parents, but had I been completely honest about my needs back in 2006, I would most likely not have ended up in my current care home now and wouldn’t even have needed as much care as I do now.

TGIF: Lonely in a Crowd

Posted on by Astrid

Today, Paula Light talks about loneliness in her TGIF post and I thought I’d follow suit. There is this weird feeling when you feel loneliest when surrounded by a roomful of people. I’ve been feeling this way lately.

It’s not as bad as it was during my high school years, when I felt isolated in the full cafeteria because I knew no-one wanted to talk to me. I mean, back then, especially in the first year, classmates were assigned to guide me through the building and I’d be sitting during lunch break with whoever was my guide for the day. It was very obvious that most if not all classmates didn’t want me there.

The situation is different now. My fellow residents definitely do seem to want me in the living room with them. Several ask when I’m coming to have coffee there again as opposed to in my room. Some specifically come out of their rooms to join me when they hear my voice. In short, it isn’t that I’m unwanted.

And in a sense, it isn’t that I can’t connect either, although that’s probably more where my loneliness is coming from. I struggle to strike up conversations with my fellow clients especially when more than one person is talking at the same time and even more so when the staff are having a separate conversation among themselves. I also get overloaded really easily, but don’t tend to notice until it’s too late. As a result, I struggle with a need for connection but also a need for a sensory-friendly environment and these often clash. Lately, I’ve chosen connection, but I fear this will lead my staff to decide I am ready for less one-on-one support. I don’t want to be seen as too demanding of attention, but when my needs clash, I really do need support to find the right balance.

Visiting Extended Family

Posted on by Astrid

Hi all. Today’s topic for Throwback Thursday is contact with extended family and especially the coming together and leaving.

When I was a child, my extended family lived all over the country. For reference, I live in the Netherlands, so “all over the country” means anyone was still within a three-hour driving distance. However, we didn’t visit with extended family very often. I rarely saw my aunts and uncles except at my grandparents’ house. As for those, we visited my maternal grandparents several times a year even though they lived closer by where I lived as a young child than my paternal grandmother. My paternal grandmother, we saw most often and had sleepovers with each summer and sometimes at Christmas too.

I don’t think we had any rituals for the coming together. For leaving, my paternal grandmother wanted to give everyone a kiss on the cheek. I didn’t mind and hardly even noticed it until she wanted to give my husband a kiss when we last saw her in 2016. My husband politely refused.

Like I said, my sister and I had regular sleepovers at my paternal grandmother’s house. We always slept on thick matresses on the floor, but they felt pretty comfy nonetheless. My grandmother made her own quilts, so she probably lay one of them over us as a duvet.

As for my paternal grandfather, I only ever visited him for day trips, but my sister once went on a week-long trip on my grandfather’s powerboat with him. They actually slept on board.

I can’t remember whether I found saying goodbye to extended family after a visit was over difficult or not. It probably depended on how well I liked said family member.

That brings me to the question of which family member I would like to bring back to life for a visit. I’d certainly choose my paternal grandmother. I have talked positively about her many times before. She declined a lot both cognitively and physically over the last few years of her life and I didn’t feel comfortable visiting her anymore during the last eighteen months she lived. Even so, I know she remained resilient up till the end and, when she could no longer take it, I know she had seriously exhausted all possibilities of remaining optimistic. She died during palliative sedation on May 12, 2018. If I could bring her back to life for a visit, I’d tell her I’m still happily married to Jeroen. For those who don’t know, my paternal grandmother was my official witness during the wedding ceremony.

The Wednesday HodgePodge (October 19, 2022)

Posted on by Astrid

Hi all. I’m joining the Wednesday HodgePodge again. This week’s questions are truly random or at least I cannot see a common theme to them. I don’t mind though. Here goes.

1. What’s something you wish you’d figured out sooner?
That I am the beloved of God and that it really doesn’t matter what my family or anyone else thinks of me in the end, God will ultimately judge my heart.

2. Something from childhood you still enjoy today?
Swimming, playground equipment (when it’s strong enough to carry adult me, such as here at the institution), children’s books.

3. Are you a fidgeter? What’s the first thing that comes to mind when you hear the word fidget?
I am a definite fidgeter! The first thing that comes to mind is hair twirling. I’ve done it since adolescence. When I was 21, my autism diagnosing psychologist in fact told me I really had to unlearn it because it was a “serious social handicap”. Thankfully, the only people who agreed were my immediate family, who had more or less abandoned me by this time anyway.

4. Your favorite fall vegetable? How do you like it prepared?
Broccoli! In fact, about a month ago, I was discussing with a former staff what vegetable I’d choose if I could eat only one for the rest of my life and I picked broccoli. It is such a versatile vegetable. I love it cooked plain or with a creamy sauce, stir-fried or even raw in a salad. Next up are carrots. I eat them raw as a side to my lunch almost everyday.

5. What’s something you find mildly annoying, but not annoying enough to actually do anything about? Might you now?
My headphones (the cheap Chinese brand ones I bought six months ago as a replacement for the Bose QuietComfort 45 ones that broke within three weeks of me having bought them) being basically useless as wireless headphones due to the battery draining very quickly. I have been intending to replace them for a few weeks, but can’t decide for sure on a new model. For now, I’m using my AirPods with my iPhone, but this is indeed slightly annoying.

6. Insert your own random thought here.
I’ve been in the main institution care home for two weeks today and it’s going pretty well. We had some issues early on, among other things with my medication, but all has been sorted now.

I Would Never (Or So I Thought): My Changing Perspective on My Care Needs #31Days2022

Posted on by Astrid

Hi everyone. Today’s optional prompt for #31Days2022 is “never”. I am immediately reminded of my shifting perspectives on my care needs over the 17+ years that I’ve been in the care system. Some things I thought I’d never accept, let alone want, in my care, are now things I wish for.

Most notably, in 2008, when I’d been in the psych hospital for about three months, I was being discussed among some autism know-it-alls. When asked what I wanted them to know before the meeting – since I wasn’t present at the meeting itself -, I wrote down that I wanted to be back in the community as much as possible as quickly as possible.

Out of the meeting came the recommendation that I be transferred to an autism treatment facility on psych institution grounds. I eventually ended up going to the orientation visit for the facility and the treatment coordinator and I mutually agreed it wouldn’t be the best place for me, precisely because of what it was: a treatment facility. I didn’t need further training in independence skills, after all, because, due to the combination of my disabilities, this wouldn’t be successful.

At first, I however misunderstood the meeting’s recommendations and thought they wanted me to go into the workhome, which is essentially a long-term living facility for autistics on the same institution grounds. And this is where I started to object in a way I wouldn’t now: I didn’t want to go live on institution grounds long-term.

For the first several years of my experience in the care system, I thought that institutionalization was an excuse for poor care. I am not saying it isn’t, because people who live in the community may need more support than those who live on sheltered institution grounds. In fact, when my current care facility was built in 2015, grouping several community-based care homes together, it was out of a need for budget cuts.

However, that wasn’t the reason I didn’t want to live on institution grounds. Indeed, the reason was the fact that I perceived myself as far more independent than I currently perceive myself. Not just that, but I had a misguided view of the amount of care I could receive.

You see, in 2007, I left an independence training home, where, during the week, the staff/client ratio was usually 2:7. Granted, there was no night shift, not even a sleeping one. I could deal with that at the time and, as a result, thought I could live in a community supported housing facility with staffing available even part of the day. Never mind that this usually meant a much lower staff/client ratio, so that within staffing hours, I would need to share my staff with a larger number of fellow residents.

I also rebelled against living on institution grounds because of my wish that more people could be integrated into society with the right support. Then again, I realized within the past several years that just because I and other people would wish for integration within society, doesn’t mean society wants us in it. For example, institution grounds are just much safer to walk on for people who aren’t safe in traffic, and that happens to include me. Just because I wish all drivers would stop their vehicles when they saw me, with or without my white cane, doesn’t mean they do. And it’s not like they can’t tell I’m disabled when I’m not using my white cane.

Also in 2008 or maybe it was 2009, I saw this documentary about a care agency in the southwest of the Netherlands which had completely done away with institution grounds in 1997, even for the most severely disabled clients. The presenter started out by saying that half (I think) of the clients in another province wanted to go back into institutions. The southwestern agency’s director started talking highly of his agency’s approach, where for instance they call their support workers “personal assistants” and where he at first claimed all clients are successfully integrated within the community. The presenter started showing examples of clients who were drowning, figuratively speaking, in the community. The bottom line of the documentary was that the director made up his mind and invited the presenter to come back a year later to hear his revised approach. I am pretty sure I wouldn’t believe the presenter, saying the clients had obviously not received the right amount of support. But if you need a “personal assistant” by your side all the time in the community while you can roam institution grounds freely by yourself, living in the community isn’t necessarily the obvious choice.

Finding My Way #31Days2022

Posted on by Astrid

Hi everyone. The first optional prompt for #31Days2022 is “way”. I thought of several titles for this blog post, but ultimately decided on this one. The rest just randomly flowed out of my fingers.

Only four days before I move to the new care home. I told my mother about it on Tuesday. Somewhat surprisingly, she didn’t react weird to the fact that I’m going to live on institution grounds. Not surprisingly, she did start talking to me about how I might be able to walk around grounds independently then.

I did, indeed, mention to the support coordinator and behavior specialist for the new home, when they came to assess my suitability for the home, that I may want to learn to take a little walk myself on institution grounds someday. Afterwards, my current assigned staff cautioned them against too high expectations. After all, I want to be “normal” pretty badly, but I still remain multiply-disabled in some significant ways.

I know that people who are “just” blind can learn to find their way around institution grounds quite easily. But I’m not “just” blind. For one thing, I am not even sure I could use my white cane in a manner that would allow me to detect obstacles safely, given my mild mobility impairment due to cerebral palsy. For another, due to autism-related executive dysfunction and other factors, my energy level varies greatly from one day to the next. So does my capacity to handle sensory stimuli. Consequently, I may be able to find my way for a short walk around grounds pretty easily one day and get hopelessly lost and frustrated the next.

I remember back when I was in the psych hospital, I voiced a similar wish to learn to take a quick walk around the building. An orientation and mobility instructor from the blindness agency came by, taught me a few times with very limited success. Before she was even finished teaching me, the staff decided it was my responsibility, so no matter my mental state, if I left the ward (even in a meltdown), no staff would come after me. I was then supposed to take my little walk, despite the fact that, in a meltdown, I wouldn’t remember where to go at all.

I know at least here in the Netherlands staff can’t legally restrain you once you’ve left an open ward, but that wasn’t the point, since I didn’t need restraining. Their point was that I was now somehow capable enough to find my way by myself and, if I wasn’t, it wasn’t their problem. This at one point led to my husband needing to drive over from the next town to take me back to the ward.

In a sense, I should know the new care home isn’t like the psych hospital, but I keep getting flashbacks. All I can hope for is that my current staff will do a proper handover.

The Wednesday HodgePodge (September 21, 2022)

Posted on by Astrid

Hi everyone. I haven’t blogged in several days. A lot is still on my mind, but I’m too all over the place to write it all down in a coherent way. Don’t worry, I’ll get to it, eventually. For right now, I’m joining in with the Wednesday HodgePodge. Here goes.

1. Volume 478. Sounds like a lot. Where were you in 1978? If you weren’t born where were you in 2008?
In 1978, my parents got married. I wasn’t born yet. As for 2008, I spent the entire year on the locked acute psychiatric unit. I got there in November of 2007 and left for the resocialization unit in March of 2009. This year was also the year I started officially dating Jeroen, whom I married in 2011.

2. Raise your hand if you remember records playing at a speed of 78 rpm? What’s a topic that when it comes up you “sound like a broken record”?
No, I don’t think I remember that. As for the second part of the question, anything that causes me stress or worry can get me talking like a broken record.

3. What’s the last thing you recorded in some way?
I rarely if ever make audio recordings. In fact, I did one once in my private diary app Day One just to see if it’d work. Can’t remember when though. Joyce supposes many will reply with something they’ve added to their DVR, but I have no idea what that even is. So yeah, like her, I’m going with something I wrote down and it’s my worries about the prospective new care home. I E-mailed them to my assigned home staff Monday night.

4. Thursday is the first day of fall (in the northern hemisphere). How do you feel about the changing seasons? Something you’re looking forward to this fall?
Fall is my least favorite season, so I don’t really like this change of the seasons. However, I do look forward to hopefully being able to capture some photos of the amazing fall colors. I’ve heard the main institution that I may move to in two weeks is surrounded by beautiful nature.

5. In what way (or ways) are you like the apple that didn’t “fall far from the tree”?
My mother half-jokingly says that I got all my negative traits from her and all my positive traits from my father. Indeed, I do share my mother’s short temper, but I also share her creative talent. In many other ways, we differ. For one thing, she hates to depend on others (except for my father). For this reason, she can’t stand those in the helping professions, including doctors. This is somewhat worrisome now that she’s in her late sixties and her health is declining. However, she considers me an attention-seeker for accepting care.

6. Insert your own random thought here.
I’m so nervous! In less than an hour, I will be headed to the main institution to have my first orientation visit with the prospective new care home. I am really hoping it is as good as people say it is. Please all pray this works out for me.

The Wednesday HodgePodge (September 7, 2022)

Posted on by Astrid

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.