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.

A Child Called “Baby”

Posted on by Astrid

Today, Emilia of My Inner MishMash asks us about our name. How do you feel about it? Do you know where yours came from or why your parents picked it?

I probably shared this before. In fact, I did indeed write about this topic in 2019. I didn’t bother to actually look up the post until finishing this one though, so well, here’s the story again through a 2023 lens.

When I was born, my parents didn’t have a name picked for me yet. The reason is the fact that I was born three months prematurely. As a result, for a few hours, the name plate on my incubator read just “Baby”. According to my mother, my father was so displeased with this that he quickly came up with a name (or picked one from the names they’d been discussing among each other). And thus I was named Astrid.

Of course, my parents do have a story of why they named me Astrid. Apparently, I am named after Swedish author Astrid Lindgren. Similarly, my sister was named after Sigrid Undset.

I do like my name, sort of. I like its relative uniqueness. I don’t like the fact that it’s hard to pronounce in English, but I do like the fact that in English-language literature for this reason I hardly come across characters named Astrid. I avoid books when I know they have a character named Astrid in them.

I don’t have a middle name and yet, I always wanted one. As a teen, I’d pick random middle names that bore neither an etymological nor a linguistic similarity to “Astrid”, such as “Elena”. Now if I had to choose a middle name, I’d go with something that also has its origin in northern Europe but is relatively easy to spell and pronounce in Dutch and English, such as “Kirsten”. I liked that one back as a teen too but didn’t use it as often. The name “Kirsten” is Christian in nature though, while “Astrid” has Pagan connotations. However, I don’t really care. The combination might actually signify the importance of the Christ, as the name “Astrid” means something like “beautiful God”.

2022: The Year in Review

Posted on by Astrid

Hi everyone. It’s the last day of the year, so in keeping with my tradition, I thought I’d do a review of the past year.

I started 2022 by reviewing the forms for my extra care funding application – my extra care had just been re-approved for two years at the end of 2021 – with the behavior specialist. “Extra care” is what I usually refer to as “one-on-one” here, but I’m told by several staff that it’s not technically one-on-one if it’s not full-time one-on-one. Whether that’s true, I don’t know. I made some suggestions for when the application had to be submitted again in two years’ time. With how much has changed over 2022, I doubt any of it will be relevant anymore.

I also started the year with a healthier food plan and by seeing a dietitian. Over the course of the next nine months, I lost about 4-5kg and, like I had hoped, got to a relatively stress-free food plan. I did, towards late summer, start overexercising a little, but I attribute that to the newness of my Apple Watch.

By April, things started to shift a little, as I officially voiced my wish to explore the possibility of my moving to the main institution or another care agency with an institutional setting. The behavior specialist and I created a housing profile with my needs and wants on it and the behavior specialist gave it to the care consultant.

As it turned out, he only got applications sent out to the main institution and to one other agency, an agency in elder care. The reason was the fact that said agency operates an assisted living facility for blind or visually impaired older adults. With the fact that my long-term care funding is blindness-based, it makes some sense, but the place isn’t suitable at all.

I did get to meet the behavior specialist and two support coordinators for the main institution. As it turned out, they did find a place they considered suitable, ie. my current care home. I moved in early October to what from the care agency’s website looked like my dream home. It quickly turned into a nightmare though.

Thankfully, during the timeframe of late November till late December, some things got settled. I’m still finding I feel very easily frustrated with some things in my home and I’m swinging between letting them go (which is very hard for me) and mentioning them (which may come across as me sweating the small stuff).

For one thing, I lost another 6kg during these three months that I’ve now been here. I know I am still overweight by a few kilograms, so in this sense it’s okay, but it does create some difficulties relating to my disordered eating habits. I’d really like to get in touch with the dietitian again.

In other health-related news, I got some med tweaks in 2022. First, I started pregabalin I think in February. Then, in April, I took my first step lowering my antipsychotic dosage.

I also found out during the summer that my kidney function was mildly decreased. I had it retested about two weeks ago and, though it decreased a tiny bit further, this could be because I have a UTI.

Let me also share about my creative endeavors of the year. I did a ton of polymer clay crafting and really loved it. When I moved to my current care home, I for a while had to let go of this hobby, but now I’m trying to slowly reinvent my creative self.

Lastly, faith-wise, I remain a struggling new believer. I am really hoping and praying that God will lead me further on the right path towards Him in 2023.

Joy in December

Posted on by Astrid

Hi all on this chilly, rainy last Friday of 2022. Today I’m sharing my last update on my word of the year, which is “JOY”. I’m joining the Word of the Year linky as well as Lisa’s One Word link-up.

The month of December started out with something that would have brought me exhilirating joy under different circumstances but brought just a weak smile to my face now: a visit from my two former day activities staff, complete with a full-on lunch buffet paid for by them. I honestly feel a bit guilty for possibly having ruined their meal with my talks of how much I was struggling in the care home. Then again, to be fair to myself, this was just a day after I’d hit the proverbial brick wall.

The next week saw some glimmers of hope, as my now assigned staff (yay, they finally assigned me a staff other than the support coordinator) convinced me to give a new day schedule a try. This finally gave me some opportunities for crafty activities.

Then on the 23rd, I had the meeting with my now assigned staff, the behavior specialist, my mother-in-law and the mediator. This again gave me some glimmers of hope.

Oh wait, “HOPE” wasn’t my word of the year for 2022. It was “JOY”. And I found joy even when the times were trying. A helpful resource in this has been a sheet of paper with two sides on it that I fill out each evening: on one side, I can list two things that didn’t go too well during the day, but on the other, I need to list two things that did go well. Yesterday’s things that did go well included several nice walks and having finished crafting a polymer clay unicorn. After giving it its finishing touches, I just gave the unicorn to my assigned staff, who for the most part helped me create it.

Overall, the month of December definitely included some important reasons for joy. I am also generally pleased with the word I chose as my word of the year. Even though later in the year it was quite a struggle to find joy, I liked to look for opportunities for it in the ordinary.

Joy in October and November

Posted on by Astrid

Hi everyone. I didn’t post an update on my word of the year last month, so I’m doing one now. My word is “JOY”. As usual, I’m linking up with the #WOTY Linky as well as Lisa’s One Word Linky. Here goes.

I honestly can’t remember the joy I was looking forward to experiencing next month at the end of September. I just had a look at the post I wrote then and I said then that I was hoping to enjoy real food, as the staff at my new care home cook. I wasn’t as high with anticipation as I now looking back thought I was, realistically saying I’d have a lot to get used to so was just hoping to enjoy some everyday pleasures. I didn’t specify what these included.

As regular readers of my blog will know, I indeed did and still do have a lot of getting used to do. In fact, I’m pretty sure I won’t ever truly adjust to the chaos that is the new care home. As a result, I didn’t experience much everyday joy over the past few months. I did for the most part enjoy the real food, but not as much as I’d have liked, as I wasn’t involved at all. I’m hoping to be able to contribute to thinking up the menu soon, but the staff usually receive ideas from the clients while they are in the communal room and the staff are in the adjacent office. Since I hardly ever join the other clients in the communal room and there’s no set time for the staff to think up the week’s menu so that I could then, it may be hard for me to participate, but I at least voiced my wish to do so once again.

Over the month of November, I did finally try my hand at crafting semi-regularly again. During October, I tried to as well, but there hardly was any time for the staff to help me so I struggled to find the opportunity. I managed to finish two polymer clay pieces during November, the latter of which unfortunately didn’t cure properly so it broke.

I also enjoyed two hour-long walks during October. During November, my mobility wasn’t as great, so I struggled even with 30-minute walks. I did eventually manage to take a couple of pictures during my walks though.

I also looked forward to enjoying visits from family in October. Indeed, my sister did visit me. So did my husband and mother-in-law, both regularly during the past two months. These visits are a welcome excuse to leave the care home.

Honestly, I am not sure whether, at the end of September, I somehow knew that the new care home wasn’t going to be what it was cracked up to be and that was the reason I didn’t specify the everyday pleasures I hoped to enjoy. Even if I knew then, the adjustment honestly is far more intense than I expected it to be. In truth, I’ve been pushed far beyond my limits and the experience has been mostly a nightmare.

Now, at the end of November, I am noticing some tiny glimmers of hope on the horizon that might mean the new care home could actually become less than nightmarish for me eventually. I am not sure these will mean anything in the coming month yet, so I will continue to focus on small joys. For example, I am hoping to enjoy crafting even if I can’t enjoy it nearly at the level I used to. I am also hoping to enjoy some walking, weather permitting, as well as continued regular visits from my husband and mother-in-law.

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 spouse a kiss when we last saw her in 2016. My spouse 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. For those who don’t know, my paternal grandmother was my official witness during the wedding ceremony.

Saying Goodbye to Mental Health Services

Posted on by Astrid

Hi everyone. October 10 is World Mental Health Day. In honor of this, many bloggers are writing about mental health this week. As a person with serious mental health challenges, I think I need to offer up my contribution too. However, mine will be a bit different, in that just last Tuesday I had my for now final appointment with a professional from a mental health service.

I did not usually share details of my less than stellar experiences with my psychiatric nurse practitioner on the blog, but let me say that my appointments, except for those concerning medication, over the past three years, have for the most part been useless. Maybe my expectations of an assertive community treatment team were too high. For those who don’t know, an assertive community treatment team is an outreach-based team that treats the most severely mentally ill, usually care-avoidant patients. As a result, a lot of the care they do is more like support and steering towards services than actual therapy. They do have a psychologist on the team, but the majority of clinicians are actually community psychiatric nurses.

Back when I got kicked out of the psych hospital in 2017, I did need such a team, as I needed lots of support in my daily life. However, once I’d moved into long-term care, maybe an assertive community treatment team wasn’t the most logical choice of treatment teams. And yet that’s where I ended up.

Not to say it’s all my or my referring agency’s fault. My nurse practitioner did flat out refuse to refer me anywhere else even when he should have realized he couldn’t provide the kind of treatment I needed. He also claimed we were doing “trauma treatment” by merely talking over my mental health struggles, which happen to be trauma-related, occasionally. In my opinion, it was neither specifically trauma-focused nor treatment.

Now I know that my staff and the behavior specialist at the care home are probably as capable as my mental health professionals were at helping me deal with my everyday instability. Neither can provide trauma-focused therapy, while both can provide a listening ear (my staff at my old care home at least often better than my nurse practitioner, in fact).

I did, of course, start my topiramate and pregabalin while in treatment with my now former mental health team. This I do credit the team’s psychiatrist hugely for. I don’t honestly think an intellectual disability physician would’ve been able to come up with this idea and I’m not sure a consulting psychiatrist would’ve gotten the idea either. Then again, now that I’m on a stable dose of both meds and only wanting to slowly decrease my aripiprazole, my agency’s intellectual disability physician can manage that.

All this combined got me to conclude that I don’t think I want mental health services anymore. If I or any of my current professionals ever change our minds, I can always get referred back to a mental health agency.

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.

Coffee, Beer, Night Staff, Etc.: Questions I Asked My New Care Home #31Days2022

Posted on by Astrid

Hi everyone. Today’s optional prompt for #31Days2022 is “coffee”. I was immediately reminded of one of the E-mails I sent to my assigned staff in preparation for my orientation visit at the care home I’ll be moving to on Wednesday.

One of the less important questions I asked was whether they have set coffee times and, if so, whether they brew regular coffee or “decaf shit”. I did point out, with a winking emoji, that it wasn’t like I didn’t want to live there if they served decaf all day, but that this’d mean I’d need to ask my husband to give me my Senseo back (if he even still has it) As it turns out, they serve regular coffee at least in the afternoon.

I asked some other questions too. Most of the first ones I E-mailed, were worded rather formally. Some of the other less important questions were about groceries. I asked whether the home contracts with a local supermarket or with a nationwide healthcare-specific superstore (the latter), whether they did chips and soda or (alcohol-free) beer on weekends and, if so, whether clients had to pay for those treats themselves. It turns out they offer these treats on Saturdays and clients don’t need to pay for that, but each client does have an account with the superstore in order to get extras, which they do need to pay for.

I also asked what my mailing address would be, since the home has a fake within-institution mailing address. Mail should be sent to the institution’s main address, with the fake address as an additional address line (I’m not yet sure how mail delivery people aren’t going to get confused).

More important questions had to do with the availability of staff. As it turned out, the early shift starts at 7AM and the late shift ends at 10PM, except on Saturdays and Sundays and every other Friday, when it’s 7:30AM and 10:30PM. That had me a little concerned at first, because I was worried I might not be able to get the right support at night.

Another important question was about the night shift. I knew that the institution night staff operate from a central office in the main building, but I wondered whether one night staff would be allocated to my home (and a few others) or whoever received my call, would come or send someone. It turned out whoever was in charge of receiving calls at that point, would send someone who was close by.

Thankfully, at my second orientation visit, I found out the door to the home is locked at night, so I cannot leave the home then. This is good in light of the 30 minutes or so between the late shift leaving and the night shift being able to fully step in. I am not in a medically fragile state, so it’s not likely I would die of a seizure or something within those 30 minutes. However, if I could leave the home on my own, it would’ve been quite possible that I’d wander around grounds all night. I am happy I will be as safe as possible in my new home.

I Give In: Following My Heart to My New Care Home #31Days2022

Posted on by Astrid

Hi everyone. The optional prompt for day 2 in the 31-day writing challenge is “give”. Again, this is a bit of a freewrite as I prepare for the move to my new care home on Wednesday.

You see, when I originally moved to my current care home in 2019, it was the first place that wanted me. I also had some rather odd preconceived ideas about the kind of place I needed to be in to get my needs met. I thought that, in order to get a high staff/client ratio, you needed to be in a home for severely or profoundly intellectually disabled people. After all, places I’d known before in the psychiatric system, had a much lower staff/client ratio and so did so-called “supported housing” facilities for those with milder intellectual disabilities. (I did already know that I wanted to be in a place for people with intellectual disability rather than mental illness even though I’m not intellectually disabled, because the intellectual disability services approach is far less training-focused than that on the mentally ill.) At the back of my mind, I did know about a few homes on the care agency’s main institution grounds that catered towards those with mild or moderate intellectual disability with severe challenging behavior, but I couldn’t get the right “care profile” (on which your funding is based) for that. Not at the time, at least.

So I accepted the room at my current care home. It didn’t feel that good right from the start, but what else could I do? I was hardly getting by living with my husband. And, indeed, I don’t know what I’d have done had I had to survive lockdown while living independently. Unsuitable as this home may’ve been, it was a much-needed step on my journey.

Once I lived in my current care home, where all my fellow residents have profound intellectual disability, it became apparent pretty quickly that I needed more intensive behavior-related support than my care profile would allow for. I was first very scared when I heard that my support coordinator was applying for the highest care profile – the one I would’ve needed for the homes still at the back of my mind. After all, at first, my funding had been denied altogether. Not just the highest care profile – any long-term care funding. Were they going to re-assess me all over again? It turned out not: either I’d get the higher care profile or I’d remain in the lower category, but my funding couldn’t be taken away. Within a month, we heard the good news that my funding got upped to the highest care profile. Five months later, my additional one-on-one support got approved.

Still, I didn’t dare give in to my wish to move to one of the “intensive support” homes on main institution grounds. Not consciously, at least. When no-one was looking, I did look all over the care agency’s website to see the descriptions of their homes, all while saying I didn’t want to move.

In fact, at my care plan review last year, I said I was 95% sure I wanted to stay here and those other 5% were because of the distance to my husband. My husband said I needn’t worry, as it’s not like there are dozens of places for me to choose from. Then again, I don’t need dozens to choose from.

The home I’m moving to on Wednesday, is again the first home that wants me. However, it is also the home that stood out to me on those searches on the care agency website. It is most certainly not perfect – I know that before I’ve even moved in. However, I have my hopes up that I won’t regret having given in to following my heart.