In Crisis Yet Again #Blogtober20

Okay, this may not be the most appropriate post for #Blogtober20. After all, the prompt for today is “relax”. It is also World Mental Health Day. Most people would use this to advocate for better mental health services, or to share tips on coping with mental health issues. Tonight, I’m too stressed out to do either. In fact, this is just going to be a raw post on my having been in crisis tonight – and not having fully recovered yet as I write this, in fact.

I was on edge all day. By mid-morning, I started feeling irritable, but it was still manageable. When it was time for lunch, a different staff from the one assigned to my side of the home came to eat with us. We also didn’t get the usual weekend lunch stuff, such as sausages, pancakes or soup. We did get a baguette with cream cheese on it. It was okay. IN fact, I much prefer that to our weekday lunches. I don’t think it’s even the fact that I didn’t get the treat I wanted, that set me off, but the fact that so much was different about the lunch. Thankfully, after being on the verge of a meltdown for a bit, I was able to calm down.

Then in the evening, I spiraled into crisis. I don’t even know why honestly. I was getting very irritable about the staff having the TV on even though the volume was turned to low. Within the next fifteen minutes or so, I landed in a full-blown meltdown that seemed to last forever. I eventually asked the staff to fetch me a PRN lorazepam, but then somehow got it into my mind to climb over the balcony railing. I didn’t, but the mere fact that I was standing on my balcony on bare feet in the rain and disclosed my thoughts, worried the staff.

I was near a staff all the time until I had to go to bed at 10:15PM because the evening staff were leaving. They did remove the knob on my balcony door, so that for now I cannot go on there. I gave them permission for this, for clarity’s sake.

The lorazepam has started to kick in, but I’m still pretty tense. I must say that I am completely in awe of how my staff handle my challenging behavior too. It must be hard having a mentally disturbed person on an intellectual disability unit. In psychiatric care, they’d probably have sent me for a time-out off the ward. After all, psychiatric professionals commonly see me as a borderline case. I’m not sure my current place is the most suitable for me, but the staff definitely are.

#Blogtober20

If I Could Turn Back Time… #Blogtober20

Today’s prompt for #Blogtober20 is “If I Could Turn Back Time”. I think we all would do some things in our past differently if we could. I certainly would.

I mean, when I was in the psych hospital from 2007-2017, I regretted almost every step I took or didn’t take. My last psychologist was right in a way that so many places to live had passed that I’d turned down. I had turned down a shelted living place for the mentally ill, a workhome for autistics, a training home for autistics, etc. They were not suitable places for me and I completely understand I decided not to take the step. However, I particularly completely regret the step I did take to move to that last psych ward in 2013. Most of the places I’d turned down, seemed more suitable in hindsight than that last unit.

Still, now that I’m in a suitable place, I can see why the things happened the way they did and I made the choices I made. None of the places offered to me back in those early years in the psych hospital were as suitable as my current care facility is.

For the most part, this boils down to them being psychiatric living and/or treatment facilities rather than those serving people with developmental disability. You see, here in the Netherlands, autism is seen as a psychiatric condition if you have an IQ above 85. And in case it isn’t clear, the care approaches of psychiatry and developmental disability differ significantly. In particular, all psychiatric facilities are aimed at people developing their independence, or as they call it “rehabilitation”. I find this particularly unsuitable an approach to me.

Looking back, I maybe should have accepted the very first placement offered to me: a treatment unit and independence training home for autistics. Maybe the staff would’ve recognized my needs there. Or maybe not. Maybe I should’ve gone to the workhome. At the workhome for autistics, the staff did understand I needed more support than they could offer. They tried to help me and my staff find another place for me but came up with a facility for people with intellectual disability. The staff at the psych unit at the time were very understanding of my needs, but they still felt an intellectual disability place wouldn’t be suitable. You all know that I beg to differ.

To make a long story short, I’ve had quite a few regrets, but in the end, my life is good the way it is now. And that’s what counts!

#Blogtober20

The One I Love: My Husband #Blogtober20

Welcome to day two in #Blogtober20. I realize that when I wrote about myself yesterday, I never mentioned the fact that I’m married. Thankfully, the second prompt in the series is “The One I Love”, so now is my opportunity to talk all about my husband, Jeroen. I usually don’t refer to him by his name, but right now it’d be confusing to refer to him as my boyfriend, now husband or whatever constantly.

I met Jeroen on an Internet forum in 2007. Neither of us were looking for a relationship. I wrote on the forum that I was bored and lonely living on my own in student accommodation in the city of Nijmegen, Netherlands. He went to school in Nijmegen at the time. He was also looking to expand his social circle, so he PM’d me asking if we could drink a cup of coffee or tea in Nijmegen somewhere. We met at the bus stop near the university’s dentistry department, because that was the only bus stop near the uni that my bus would stop by. We went for a coffee or tea at the uni’s cafe. I was so nervous that I tumbled off a step and dropped my coffee.

Thankfully though, Jeroen didn’t mind. Though he had been nervous too and had mixed feelings about our first time meeting, he did want to meet again. I invited him to my student apartment, just because I had no clue where else to meet. That could’ve been really stupid, but thankfully it turned out well.

Six weeks after first meeting Jeroen, I was hospitalized onto the psychiatric ward, which didn’t have an Internet connection for patients. I didn’t have Jeroen’s phone number, so asked my staff to log onto the forum and send him a message. The staff didn’t include my phone number, because I hadn’t requested it.

Several weeks later, my father called to ask whether he could give my number to Jeroen. It turned out that Jeroen had found my father’s E-mail address by googling the whois info for his website. I am so grateful my father didn’t have privacy protection on, as I do with my websites.

It certainly wasn’t love at first sight (oh, that sounds stupid for a blind person) for me. On the contrary, when Jeroen told me he was in love with me, I let him wait four months before reciprocating it. Similarly, when he proposed to me in June of 2010, I replied: “So do you think that’d be cool then?” He did really want to marry me and we had our wedding date on September 19, 2011, exactly four years after we’d first met.

Jeroen and I don’t live together. Like I said, he fell in love with me while I was hospitalized. This hospitalization lasted 9 1/2 years, after which I was kicked out to live with Jeroen. I really struggled to cope living semi-independently, so eventually applied for long-term care funding.

Jeroen is 31-years-old (32 next month). He sometimes jokes about my having married a younger man, as I am 34. I am glad he isn’t significantly younger than me though, as, when I was hospitalized on the locked unit, I wasn’t to leave the ward unless with someone 18 or over. We loved going to the hospital cafeteria to have tea or hot cocoa. We also loved playing cards.

Jeroen and I have the same sense of humor. We love wordplay and have our own phrases and terms for communicating certain things. For example, when we get bored of each other, we say “banana spider”. He is also really inventive with new nicknames for me. I, not so much.

I really love Jeroen and want to be married for the rest of our life. Not living together has its ups and downs. Particularly in these times of corona, we’ve had to be separated more than we’d like to. Thankfully, our love has survived.

#Blogtober20

My Medication Musings: Abilify

It’s been a while since I last did a post on my medications. Today I’m writing about the medication I’ve been on the longest: aripiprazole (Abilify). I’ve been taking this second-generation antipsychotic for over ten years.

When I first got prescribed Abilify in 2010, I had been on no psychotropic medications except for PRN oxazepam for over two years. I was having a lot of meltdowns though and the staff at the psych hospital couldn’t adequately care for me. I was sent to the locked ward for a time-out shortly before starting on Abilify.

When my psychiatrist proposed this medication, he made a pun about the drug’s name by saying it makes things a little easier. I didn’t like that, but agreed to take a low dose of Abilify anyway. I started at 5mg a day.

Within half a year, I had had my dose upped to 15mg a day. I did pretty well on that moderate maintenance dose for several years, until I moved to another hospital. There, the staff/client ratio was lower and besides, staff weren’t as willing to accommodate for my needs. I quickly had to up my dose again to eventually 30mg a day.

I wasn’t so sure I wanted to go beyond 15mg, as most clinical guidelines recommend a higher dose for acute mania or psychosis only. My new psychiatrist disagreed and seemed to have no interest in lowering my dose once I had upped it. For this reason, I’m still on 30mg a day.

When I first came here, I expressed a wish to lower my dosage once I’d settled into the care facility. The intellectual disability physician for my facility as well as my psychiatric nurse practitioner recommended I wait at least six months. I’ve now been in the care facility for a year, but haven’t felt comfortable asking to be tapered yet.

Now I must say I don’t experience any of the more major side effects, such as akathisia (a form of physical restlessness). I however do feel slightly sedated.

I also feel that the medication’s effect has worn off over the years. I recently learned that your neurotransmitter receptors overgrow when you’ve been on psychotropic drugs for a long while. At least, that seems to be the case for the dopamine D2 receptor, the one Abilify mainly acts on. Recommended action is lowering the dosage or trying another medication. I will definitely raise this issue with my nurse practitioner.

As a side note, like I said, I had my dosage upped once I moved to a psych ward with a lower staff/client ratio and less willingness to accommodate my needs. This is not an appropriate reason for medication increases, but I didn’t know what else to do.

Home Sweet Home

This week, Eugi’s weekly prompt is “Home sweet home”. I’ve never participated in this prompt before, but I thought I’d now.

Two weeks from now, I’ll be living in the care facility one year. It feels closer to home than any of the homes and facilities I’ve lived in before did. That feels weird. My parents’ house felt like home, but that’s just because I knew nothing else. My parents felt as safe as possible, but again that was because I knew nothing else.

Then I went into the training home. That was temporary, as you were supposed to live there for at most two years while training for independent living. That’s what I did eighteen months later. I cried my eyes out the first day, in front of my mother, who got angry with me.

It felt horrible to know that this was it forever. I mean, for at least the duration of my university studies, so four years, I’d live there. Then I’d live in a rented house on my own. It completely overwhelmed me.

As regular readers know, it didn’t last. Three months in, I landed in a mental crisis and was hospitalized. Though I stayed in the psych hospital for 9 1/2 years total and for over four years on one ward, it never felt like home. I knew it was temporary, after all.

And then I got kicked out. I lived with my husband in our rented house in the tiny village for 2 1/2 years. Even though I got by okay, it never felt good.

And now I’m here. I got that overwhelming feeling that this is it forever in the first weeks too, but this time, it was good.

I struggle to believe that this is not yet another temporary living arrangement or one in which I cannot cope. I act in and out a lot, probably to somehow “prove” that I’m not suited to this home. That I’m not suited to any home in the world. That there is no home sweet home for me.

Yet my staff so far say that I can stay here for the rest of my life. That, too, feels kind of overwhelming, but like I said, in a good way.

I also of course have my and my husband’s home in Lobith. That one still feels a bit odd to me. I never really lived in it, since we bought it two days after I moved into the care facility. In fact, I struggle to consider it my house too. When I write about it, I often write that it’s my husband’s house, then correct myself and add “and my”. I want to keep a connection to that house too, but it doesn’t feel like home.

A Time I Decided to Speak Up for Myself

The weather has cooled off some, but I’m still somehow lacking motivation to do much. For this reason, I scrolled aimlessly through some journaling prompt books I have in my Kindle app. In one of them, one of the prompts that caught my eye was to recall a time when you spoke up for yourself.

I am usually not one to speak up for myself easily. Especially not when the person I’m needing to advocate to is an authority figure. The memory I’m going to describe involves my last psychologist at the psychiatric hospital.

She was somehow convinced that I have dependent personality disorder. There are good reasons to think so, but her reasons were not among those. To put it bluntly, she thought I misused care.

More importantly than her diagnosis of DPD though was her removing my autism diagnosis that I’d had for nine years. She believed that I could not possibly be autistic because I had a brain bleed as an infant and that instead my diagnosis should be some form of brain injury. She ended up putting hydrocephalus (which I’d developed as a result of the brain bleed) on axis III of the DSM-IV classification and that apparently should suffice in explaining my difficulties. That plus, of course, DPD. Well, it didn’t.

Like I said, I have trouble sticking up for myself. This is indeed a DPD criterion. Honestly I don’t even care whether I might have DPD actually. I can see how I have some traits. But DPD is different from care misuse. And that’s what my psychologist was accusing me of.

So I finally decided to stand up for my rights and demand an independent second opinion. This was extremely hard and my psychologist had been successfully trying to talk me out of it before. Not this time though. In February of 2017, I had an appointment with a clinical neuropsychologist at Radboud university medical center in Nijmegen. Three months later, on my would-be discharge date from the mental hospital, I got my autism diagnosis back.

Autism, of course, doesn’t explain everything I experience. I might have DPD too. And God knows what else. But I don’t misuse care.

My psychologist, interestingly, claimed that I spoke up for myself really well. That’s a rather contradictory statement to the DPD diagnosis. After all, dependents are often seen as passive. I still wonder why she didn’t have the balls to “diagnose” me as a malingerer.

Adult Separation Anxiety

One of the consultant’s comments in my emotional development assessment was that I have a lot of separation anxiety. The rest of my care plan is also full of how I’m afraid to be alone. A little over three years ago, my psychologist at the psych hospital said basically the same by diagnosing me with dependent personality disorder (DPD). Then, I vehemently disagreed. It wasn’t just out of anxiety that I needed lots of care, after all.

Another reason I was in denial of my separation anxiety/DPD, is the judgmental way in which my psychologist approached the matter. She felt I just needed a good kick in the behind and for this reason discharged me from the mental hospital almost with no after care.

Of course, that’s not the way to treat dependent personality disorder. Besides, one of the main features of DPD is not physical dependence, but unquestioning compliance, which I certainly don’t display. I don’t lack assertiveness at all.

I want to clarify here that, at least in my case, I’m not unwilling to be alone. I’m alone right now as I type this blog post. When I’m mentally well, I can be quite happy being alone, as long as I know there’s someone available if I need them.

It’s all too easy to judge people with adult separation anxiety disorder or DPD. Usually though, it’s much more helpful to approach them from an emotional development angle than from a character flaw angle. I again at least don’t want to ask for attention all the time. The things that I get help with from my staff, even though I can sometimes do them myself, I don’t ask for help with because I’m just lazy. In fact, it’s often easier to do some self-care tasks quickly by myself than to ask for help, but then the tasks don’t get done thoroughly.

I have for the majority of my life figured out how to care for myself alone. That’s because, despite all the independence training I got, no-one started with the very basics. Besides, like I said yesterday, I don’t usually distinguish between feelings of hunger, pain, etc. Isn’t it a bit odd then that you’d expect me to remember to do the day’s self-care tasks (which are many!) and actually do them all by myself?

I am so glad my current care facility isn’t as judgemental as my former psychologist was. My current staff don’t assume unwillingness, like she did. We may not find out soon yet what will turn out to have been the best approach. It will also probably depend on what measure of success you use for the outcome: independence, mental wellbeing, cost-effectiveness, etc.

A College Memory

One of Mama Kat’s writing prompts for this week is to write about a college memory. I wrote about the very same topic on my old blog in 2016, some weeks after it was also a prompt on Mama Kat’s blog. I reread that post just now and was actually going to share the exact same memory. Now I don’t think most people who read my blog now, read my blog then. Still, I want to choose a different memory.

In 2016, I shared the memory of my first day at Radboud University as a linguistics major. I had a massive meltdown upon entering the lecture hall then, because I hadn’t known that there were over 200 students in there. I left and called my support coordinator, who took me to her office. This was the first time the psychiatric crisis service was called on me, but they said I wasn’t “mad enough” (my support coordinator’s words) to be admitted to the hospital.

Roughly eight weeks later, on October 30, I had my last day at Radboud University. I didn’t know it at the time, of course, since I wasn’t admitted to the mental hospital until November 3.

I had an exam that morning. It was my first introduction to language and communication exam. Passing this exam wouldn’t award me any credits, as the credits for the course weren’t applied until you passed the second exam some weeks later.

As always, I took a ParaTransit taxi to the university that morning. I think I had a meltdown right as I went into the building the exam was supposed to be held in, but I’m not 100% sure. I definitely had a meltdown when I was finished. The taxi driver driving me home threatened to dump me at the police station.

Regardless, I did sit in on the exam. Introduction to language and communication is basically a course in dissecting words into morphemes and sentences into their different components (no idea what those are called). That’s why the course was also sometimes called universal grammar.

Several months later, when I was home on leave from the hospital, I retrieved my E-mails. Back at the hospital, I sat down to read them. Among them was an E-mail from the director of studies telling me that the intro to lang and comm instructor had been missing me so had I dropped out? I also found an E-mail from administration notifying me of my grade on the exam: I scored 85%.

Several months ago, when my husband was clearing out the attic for our move to our current home, he found a letter from Radboud University. It was my provisional report on whether I could continue my studies or not. “Your studying results are grounds for concern,” it said. I’m so glad I never saw this piece before.

Mama’s Losin’ It

Not Their Baby Anymore

Tomorrow is my 34th birthday. My parents came for a visit today. My mother, for the first time in so many years, didn’t openly reminisce about the time I was a baby. In fact, she seemed rather relaxed.

I was born three months prematurely. My due date would’ve been September 29, 1986 instead of June 27. Most if not all of my multiple disabilities are the direct result of my premature birth. I mean, it’s controversial to say this about autism, as most people in the autistic community claim it’s purely genetic. I have some genetic risk factors too, in that both my father and paternal grandfather are/were of the broader autistic phenotype. We can never be sure though how much my genetics contributed and how much the brain bleed and subsequent hydrocephalus I suffered did. In any case, my blindness and mild cerebral palsy are both due to my premature birth. My blindness is caused by an eye condition called retinopathy of prematurity and my CP is due to the aforementioned brain bleed.

As much as I sometimes seek to discuss my early childhood with my parents, I’m happy neither brought up the topic this year. They were in some rather brutal ways confronted with my current life. After all, due to the COVID-19 measures, I couldn’t be at my husband’s home when they visited. This was one of the first times my parents actually visited me in a care facility. When I was in the psychiatric hospital, either they’d visit me at my student apartment or later at my and my husband’s home. I think there were a few years, probably 2010 and 2011, when I had neither, but they always managed to take me out to some restaurant or something then. They were probably confronted with care facilities a few more times, but not in the past eight or so years.

A fellow resident tried to hug my mother when she came in. She didn’t comment. She did ask at some point whether my fellow clients can talk and I honestly replied that most can’t. When I told her there are clients in other homes I can talk to, she did ask why I didn’t live there then. I just said I didn’t have the right care profile for those homes or there was no available room.

Honestly, I’m totally relieved that my parents didnt’criticize me. I know they don’t agree with my being in a care facility. Still, they probably realized I’m not their little baby anymore.

Written for Fandango’s One-Word Challenge (#FOWC): baby.

I Am My Top Priority?

Today I decided to buy The Goddess Journaling Workbook by Beatrix Minevera Linden. This book of journaling prompts focuses on the Greek goddesses to explore yourself and keep a manifestation mindset all through the year. The first goddess to be explored is Persephone. She was led into the Underworld by Hades and ate a pomegranate there. This fruit was the fruit of the dead, so Hades could really keep her in the Underworld forever. Eventually, Hades and Persephone’s mother Demeter reached an agreement to keep Persephone in the Underworld half the year and in the upper realm the rest of the year.

Persephone’s story is used as a metaphor for our darker side and our mistakes that follow us throughout life (like Persephone’s eating the pomegranate did). The first prompt in Persephone’s chapter is titled “You are your top priority”. It asks us when we didn’t put ourself first.

Well, my first thought is: am I really supposed to be my own top priority? My husband often says he values me more than himself. I tend to reply that I value him more than myself too. Whenever I doubt that I value him more than myself, I feel guilty. But really, I currently choose myself over my husband whether that’s supposed to be so or not.

It wasn’t always this way. Until I made the decision to try to go into supported housing on September 20, 2018, I always put others first. Not just my husband, but literally almost everyone seemed more important than me.

I was diagnosed with dependent personality disorder in 2016. Though the diagnosis was made for all the wrong reasons, there is some truth to it. I remember my psychologist used my lack of resistance to her opinions against me and she was right. Until I decided to ask for a second opinion in November of that year, I never openly fought her list of ongoing misdiagnoses and mistreatments. It’s interesting that, later, she said I am very assertive but maintained that I have DPD nonetheless.

What also comes to mind, is that as a child and even as a teen, I always did what others wanted and put them before myself. I remember at one point using the Persephone myth to describe how I felt about my relationship to my classmates in high school. (Remember, I went to grammar school, so the classics were taught a lot.)

Still, I was thought of as self-centered or selfish even by my parents. This is probably because, in a materialistic way, I did put myself first. I was often jealous when my sister got gifts. Indeed, she did get more than I did, but I got more attention, albeit most negative.

Now I do generally put myyself first. I decided to go into long-term care despite no doubt disappointing my husband a bit. I mean, of course I struggled greatly living semi-independently, but it wasn’t like I was dying. Or maybe sometimes it was, because I did take two overdoses that could’ve killed me. Then again, wasn’t I selfish for doing this?

Linking up with Life This Week.