If I Could Turn Back Time… #Blogtober20

Posted on by Astrid

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

Posted on by Astrid

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.

I met my partner 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, my now partner 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 my now partner, I was hospitalized onto the psychiatric ward, which didn’t have an Internet connection for patients. I didn’t have his 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 my now partner. It turned out that my now spouse 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 my now partner 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.

My spouse 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 my partner. I really struggled to cope living semi-independently, so eventually applied for long-term care funding.

My partner 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.

My spouse 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 my spouse 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

Activities I Enjoyed As a Child

Posted on by Astrid

Hi everyone! How are you doing? For today, I have a rather joyful post. I’m going to share stuff I enjoyed doing as a child. I mean, I didn’t have the best of childhoods, but there were definitely things I enjoyed. Here is a list of activities I liked as a child, and some I still do.

1. Listening to cassette tapes. At around age five, my parents got me a subscription to the Dutch audio magazine for blind children. It was on cassette tape at the time. It lasted only an hour and was sent out every three weeks, but I still loved listening to it. I also loved listening to old editions. Back then, you had to return the cassette tapes after listening, but you could also send a guilder with the empty case and a note saying you kept the magazine. I did this almost with every edition and listened to a lot of them repeatedly.

My parents got me a subscription for the magazine for blind preteens for my tenth birthday and I started subscribing to the one for teens at age twelve. I had that one for about ten years I believe.

I also loved listening to audiobooks. I hated reading Braille books, but really loved the cassette taped books.

2. Playing with dolls. I had a favorite doll, Roza (it was really spelled with a Z). I got her for my third birthday from my grandma, who had bought it on a trip to Berlin. Roza had blond hair and light skin color. My sister’s favorite doll was called Marijke and she was dark-skinned with black hair. We often played that the dolls came from Suriname and went back there on vacation.

3. PlayMobil®. I started playing with PlayMobil® at around age three. Back then, I had three favorite figures, whom I called Pekel, Laren and Foet, none of which are actual Dutch names. These figures did normal everyday stuff like eating, going to the toilet, etc.

When I got older, I played more complicated games. At one point, when I was around eleven, I had two Native American figures whom I called Ingassa and Maranna. My sister played with these figures, while I played with a red-haired figure called Pippi. We said that Ingassa and Maranna were originally from Costa Rica and we again played that we were going back there. Okay, I sound real racist right now with all my stereotyped games.

4. Playing outside. When I still lived in Rotterdam, we had a sandpit that my father had built. It was made of wood which hadn’t been varnished I think, as it was often moldy. I loved playing in it.

We also had a set of swings. I loved those! In Apeldoorn, we got a large set of playing equipment from our grandma. It included a rope, a horizontal bar to bend over and also swings. Until I was at least thirteen, I spent a lot of time on the swings. At the day center, we have a set of indoor swings and I love them, even though I get dizzy quickly going on them.

What activities did you enjoy as a child?

Weird Dreams

Posted on by Astrid

It’s already Thursday here, so I’m technically a day late to join in on Fandango’s Provocative Question. I’ve never joined in on this meme before, but I really liked this week’s question. It is to share the strangest, weirdest dream you can remember.

I already shared about the dream that got me to quit putting sugar in my coffee some months ago. That wasn’t as weird a dream, considering that refined sugar is by some people considered pure poison indeed.

Another weird dream that had an impact on my later life is one I had when I was about seven-years-old. I dreamt that there was a big soccer match between Ajax and Feijenoord, the two main rivaling clubs in the Netherlands and the only ones I’d heard of at the time. I apparently was an Ajax fan and they won. So far, nothing weird, except that I knew nothing about soccer and certainly wasn’t a fan of any club. The weird bit comes now: someone gave me some pills that made me cry, so that everyone would think I was sad and hence supported the “right” club.

As a side note, I lived in Rotterdam at the time, so indeed Feijenoord would’ve been the club to support. I became a wannabe Ajax fan as soon as I learned anything about soccer at all, as my friends at the school for the blind were Ajax fans. This was probably after our move to Apeldoorn though.

Like I said, the dream had an impact on my later life. Indeed, when I went to the school for the blind at age nine, I got a phys ed teacher who looked a lot like the man who’d given me those pills in my dream. I took an instant dislike to him and even though I knew why, I couldn’t help it. He was a pretty strict teacher, so I may’ve disliked him anyway.

What was one of the weirdest dreams you can remember?

A Time I Decided to Speak Up for Myself

Posted on by Astrid

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.

Book Review: Who Will Love Me Now? by Maggie Hartley

Posted on by Astrid

A few days ago, some people on an E-mail list were discussing a new collection of short stories by UK foster carer Maggie Hartley. I couldn’t find the collection on Apple Books, but I did stumble upon one of her full-size books, called Who Will Love Me Now?. Most people on the list had already read it, but I hadn’t, so I bought it and started to read it.

Summary

At just ten years old, Kirsty has already suffered a lifetime of heartache and suffering. Neglected by her teenage mother and taken into care, Kirsty thought she had found her forever family when she is fostered by Pat and Mike, who she comes to see as her real mum and dad.

But when Pat has a heart attack and collapses in front of her, Kirsty’s foster family say it’s all her fault. They blame her temper tantrums for putting Pat under stress and they don’t want Kirsty in their lives anymore.

Kirsty is still reeling from this rejection when she comes to live with foster carer Maggie Hartley. She acts out, smashing up Maggie’s home and even threatens to hurt the baby boy Maggie has fostered since birth. Social Services must take Kirsty’s threat seriously and Maggie is forced to choose between eight-month-old Ryan, who she’s grown to love, or angry Kirsty, who will most likely end up in a children’s home if Maggie can no longer care for her. Maggie is in an impossible position, one that calls in to question her decision to become a foster carer in the first place…

My Review

This book totally spoke to me! I could on some deep level relate to Kirsty. After all, I too displayed many behaviors similar to her at around this age. Age ten was also when my parents first considered (albeit not seriously) institutionalizing me at the school for the blind.

I could and to some extent still can relate to Kirsty’s volatile behavior. I have never had to live with anyone other than my biological parents until I was nineteen, but I did often feel rejected by them and showed this in quite dramatic ways.

I immediately, for this reason, rooted for Kirsty and resented Pat and Mike. It was for this reason that I loved to see how the story unfolded.

I read one earlier story by Maggie Hartley, but that was an eShort. I for this reason already knew I liked Maggie’s writing style. I loved it in this book too.

Overall, this was a great read and I finished it within less than a week.

Book Details

Title: Who Will Love Me Now?: Neglected, Unloved and Rejected. A Little Girl Desperate for a Home to Call Her Own
Author: Maggie Hartley
Publisher: Trapeze
Publication Date: July 20, 2017

Read With Me

A Trip to Berlin

Posted on by Astrid

Fandango has started a new challenge for the month of August and the prompt word for today is Trip. I’m going to write about a train trip my parents, sister and I took to Berlin in 2002.

At the time, you had this bargain called “schönes Wochenende” in Germany, which meant that for just €28, four people could travel all over Germany by train on a Saturday or Sunday. The only catch was that you had to take local railroads.

My parents, sister and I at the time lived in Apeldoorn, Netherlands, which isn’t too far from the German border. So we drove to Bad Bentheim to go on the train. The first train we took, drove us to Osnabrück. Then we took three more trains until we finally arrived at Berlin Hauptbahnhof. The last train we took, I remember, had Frankfurt an der Oder as its final destination. I found that fascinating.

I at the time had train routes as one of my autistic special interests. It was totally awesome learning all about the German local railroads.

The holiday in Berlin itself wasn’t a good experience. I had a lot of meltdowns and was pretty confused. I did like visiting a street called Straße des 17. Juni, because that year on 17 June I had first opened up about my distress that I’d suffered with for years. The street was named after a protest in east Berlin in 1953.

This was, actually, the last trip I took with my parents. The next year, I went to computer camp in Switzerland and the year after that, to blindness skills camp at the country’s training center for blind people. The year after that, I graduated from high school.

I feel pretty sad that I don’t have many memories about the trip to Berlin and the ones I do have, aren’t good. I guess trips rarely were enjoyable for me. That’s probably why I haven’t been on vacation with my husband in six years.

A Year Ago

Posted on by Astrid

One of Mama Kat’s writing prompts for this week is to look back at a year ago. Where were you then? What has changed and what hasn’t? Let me share.

A year ago yesterday, I had my intake interview and tour of the care facility in Raalte. We visited the sensory day activities group and snoezelen® room, as well as the home selected for me. At the home at the time was a respite placement for a man I knew from the day center I went to at the time. He greeted me excitedly: “Astrid!” He then went on to babble “respite fun”, “Mommy and Daddy vacation”, etc. I was shown around two rooms, one this man’s room at the time and one another client’s room. I think that client got moved to another room when I came and I now have his room.

Even though I had been invited on a tour of the facility, I didn’t know for at least another month that I had actually been accepted. The reason was that the staff all had to agree they could provide me adequate support and care, given that my needs are in some ways very different from the other clients’. They, after all, all have severe to profound intellectual disability.

Now, a year on, I’m settled nicely into the care facility. I didn’t get to attend day activities at the group they’d shown me. Now though, and for at least another two months, we get day activities at the home.

I think also around a year ago today, my husband had first seen the house in Lobith we ended up buying. I ended up moving to the care facility in the same week we got the keys to our new house. As such, a year ago today, I still lived in the tiny village rental house with my husband.

As I look back, I keep praising God that this whole COVID-19 thing didn’t happen last year. Even though the day center I attended at the time is slowly opening its doors again, community support is still mostly phone-based. I am forever grateful I got my long-term care funding approved last year.

In other news, the weather is drastically different now from last year. Last year, all weather records were broken with temperatures rising to 40°C. Now we’re lucky to reach 20°C and have a few hours of no rain each day.

How is your life different now from last year?

Mama’s Losin’ It

A College Memory

Posted on by Astrid

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

I Am My Top Priority?

Posted on by Astrid

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.