Home Sweet Home

Posted on by Astrid

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.

COVID-19 Reality Check: It’s Still Not Over

Posted on by Astrid

So like I said earlier today, I had a low-grade fever yesterday. I didn’t think much of it. I guess the reality that COVID-19 is far from over yet, hasn’t hit home yet. My husband was immediately worried. I may’ve worried him too much by my wording. I mean, there’s a word for a low-grade fever that I should have used, but I said I had a slight fever instead.

I asked my husband whether he could come tomorrow, now that I no longer have a fever. He said no way and got a little annoyed with me for even raising the issue again. He said if I do have COVID-19 and infect him and then his father, my father-in-law could die. Or if I do develop symptoms again when at my husband’s and my house in Lobith, I won’t be allowed to come back to the care facility. I understand, but it’s hard.

At the beginning of the COVID-19 pandemic having hit the Netherlands, I was somewhat optimistic about its progress. I mean, I predicted that, by September 2020, vacations would still be discouraged but the virus would pretty much have left anyway. It hasn’t.

Then in mid-May, life more or less went back to normal within the care facility for me. At the end of June, the restrictions on visitors were practically lifted altogether. I mean, I’m supposed to call the facility after having been in Lobith to make sure I’m still symptom-free and so is the care home, but I don’t.

In early August, my mother-in-law came by and we went to sit outside of a restaurant for a cup of coffee. No-one asked for our contact details or checked that we met the 1.5m distance requirement. I later heard the rules were made stricter again at the end of that week, but I still am not seeing much of a difference.

My care facility went mostly back to normal over the summer. I mean, the home a floor below me got infected with COVID-19 in late March. After that, staff were not allowed to work on multiple units and the night staff were to keep their distance as much as possible. After all other homes stayed clear, staff are now allowed to work on multiple units again, even in the same day. Staff, except for the night staff, never stopped hugging clients or holding their hand. Some staff wear face masks some of the time. Most don’t.

My husband commented earlier this evening on terraces being packed full of people in Elten, Lobith’s neighboring town across the German border. He sarcasttically wondered whether they had the vaccine already. They don’t.

My husband is scared. He may be more cautious than most, or at least than me. That’s a good thing though. He wants to protect himself and his loved ones. I understand.

Meanwhile, I want to go back to normal – the old normal. I saw a writing prompts book on coronavirus today in Apple books and decided to get it, even though in my mind, COVID-19 was in March, not September. Yet it is.

Mama’s Losin’ It

PoCoLo

#IWSG: Choose One Author

Posted on by Astrid

IWSG

It’s the first Wednesday of the month again. Oh my, can you believe we’re already two-thirds through 2020? I can’t. In any case, the first Wednesday of the month is the #IWSG posting day.

I haven’t been doing as well as I’d hoped in the writing department over the month of August. Yes, I did post to this blog several times a week each week. I remember my husband at one point, when I was in the mental hospital and particularly lethargic, encouraged me to write one blog post each week. It’s been forever since I last struggled with that, but still, I want more.

I saw a few weeks ago that Chicken Soup for the Soul have a book coming out about tough times because of the COVID-19 lockdown. I thought of submitting a story about my husband’s and my forced lack of seeing each other for the first three months of quarantine. Still, I feel pretty insecure and fear rejection. I know, as a writer, rejection is part of the business and if you don’t try, you won’t succeed at all. I however struggle not to take rejection personally. I know that Chicken Soup just won’t notify you if you’ve been rejected, but still. The deadline is October 31, so I still have time.

Now on to the optional question. This month’s question is: if you could choose one author, living or dead, to be your beta partner, who would it be and why? This is a little hard, as I’m not a book writer, so really I’d have to go with someone to critique my blog. I would however still really like to at least write and hopefully (self-)publish my memoir. For this reason, I’m choosing foster care memoirist Cathy Glass. She wouldn’t really be my beta partner – more my writing mentor. Although I must say I’d love to beta read her memoirs too.

In addition to memoirs, she also writes thrillers under the name of Lisa Stone. I’d really love her to teach me how to write fiction.

How about you? Would you like an author to be your writing mentor or beta partner?

Advice to Today’s High Schoolers

Posted on by Astrid

This week, one of the prompts over at Mama’s Losin’ It is to share advice you’d give today’s high school students. I cringed a lot at Mama Kat’s own post, as it was based on the idea that all high schoolers have parents who have their best interest in mind. I mean, I lied regularly as a teen. Though I wouldn’t advocate for that, it was all I could, because honesty led to harsh punishment.

I am not sure how much of my experiences was shaped by my neurotype, ie. being autistic. I mean, the main reasons I was ridiculed and punished harshly were because I was “weird”. However, there are lots of high schoolers who for whatever reason cannot follow Mama Kat’s advice, either because of their own situation or because of their parents.

For this reason, the main piece of advice I would give any high schooler is that it’s okay to be themselves no matter what. Whether your parents accept you, is something about them, not you. Do stand up for yourself if they are abusive or hurtful. You may be a minor, but that doesn’t mean your parents are all-powerful and all-knowing (especially that).

Also, seek out adult role models other than your parents. I felt helped a lot by being in contact with disabled adults. Even for neurotypical, non-disabled teens, it is useful to have people that inspire them other than their own parents.

Use social media, but of course use it wisely. There are spaces on social media for people just like you. Of course, I know most parents supervise their teens’ social media use and I think there is some good reason for that. Mine thankfully didn’t, but then again I was pretty careful not to engage in unsafe behavior online.

I do agree with Mama Kat that honesty is part of a good family dynamic. It has to come both ways though. As teens, it will help you to not give your parents reasons to snoop on your private life by being open about it. If your parents aren’t safe, seek out another adult to talk to.

What advice would you give current high school students?

Mama’s Losin’ It

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.

My Daily Routine (Or Lack Thereof)

Posted on by Astrid

And still it’s incredibly hot here! It did start to rain last night, but it’s not cooled down much in my room. It’s already past 9PM here and I don’t feel like writing. Or doing anything else. But I bet I cannot sleep either. Therefore, I blog.

Today’s #FDDA prompt is “your daily routine”. My daily what, I ask?

Unlike many other autistics, I am not one for clear routines. In the mental hospital, I would just lie around and do whatever, just like I see many people do now during the COVID-19 lockdown. I didn’t have a set time I’d go to bed or get up. I didn’t have a daily personal hygiene routine, as I hated most personal care tasks and there was no-one to say I needed to do them. Well, there was the staff, of course, but it was their view that I was responsible enough to decide these things for myself.

Once I lived with my husband, I did go to a day center each weekday morning. This meant I did have to get up at the same time each day. I did have an okay morning routine back then, as my husband had instilled the importance of personal care into me.

Then I went into long-term care. Pre-COVID, I still had somewhat of a routine, as I was expected to go to the day center each weekday (except for every other Friday). I tried to maintain such a routine when the day center closed, but I cannot seem to really.

Still, I have some set activities I do each day. I go for a walk in the morning and one in the afternoon too. We also have coffee, lunch and dinner at the same time each day. Now that it’s hot though, I don’t go for walks and often skip coffee break too.

These last few weeks, the days have truly been merging into each other like time didn’t really matter. I do still try to blog most days, usually around the same time.

Sometimes, I wish I had more of a strict daily routine. That’s not really possible though and I’m not sure it’s really what would be best for me.

What about you? Do you thrive on routine?

If I Could Have Any Pet

Posted on by Astrid

Today’s topic for Fandango’s Dog Days of August (#FDDA) is “pet”. One of the suggested topics is to talk about which animal you’d have if you could have any pet. I am going to use this topic as a starter for today’s blog entry.

As regular readers of my blog might know, my husband and I have a cat. We first got a cat, Harry, when we were first planning on living together in 2013. We’ve had Harry since kittenhood. However, he was pretty hyperactive, so we got Barry, thinking the two might make great playmates. Well, they didn’t, so we ultimately rehomed Harry. Now we still have Barry.

I always grew up with cats. The thing with them though is, they invariably seem to sense my inadequacy. Whether this is due to my blindness, I don’t know.

Regardless, cats aren’t quite as confortable with me as I’d like them to be. I still hope I will someday have a cat that will have a true liking for me, but that’s not in cats’ nature, I’m afraid. They’re more introverted than some other animals. Or maybe that’s just been the cats I’ve had so far.

All that to say that, if I could have any pet I wanted, I would like a dog. However, I’d for sure like it to be a psychiatric service dog as well as a trained guide dog. That seems a bit much, maybe, but I know some blind people whose guide dogs also help them with their mental health issues.

I may also want to have a pet rabbit or guinea pig. Rabbits generally need a lot of space, though my sister-in-law keeps three (if I’m correct) in her house. She does have a garden, so I hope they’re able to roam about there at times too.

In general though, I don’t think I’m that much of a pet person. I fed Barry dutifully when I still lived with my husband, and though I did take delight in it, I wouldn’t say he’s like my child or something. I’d love to develop more of a connection to Barry and to whichever future pets I might have. I do care deeply about them, but I just don’t feel the natural attunement to my pets that others do. I can’t say it’s an autistic thing, as a common autism stereotype (thanks, Temple Grandin) is that we have a strong connection to animals. I guess I for one don’t.

#IWSG: The Form Will Find Me?

Posted on by Astrid

IWSG

It’s the first Wednesday of the month and regular readers know what this means: it’s time for the Insecure Writer’s Support Group (#IWSG) posting day.

Well, let me say I’m pretty insecure indeed. I did pretty well on the blogging front this past month, but I always dream bigger than I actually live. I mean, I remember saying about four years ago that, within the next five years, I’d like to write my memoir and yet there’s not a single word down on the page. That plus I haven’t a clue where to start. Stories or pieces of non-fiction would flow so easily when I was younger. I have one work in progress that could’ve turned into a young adult novel if I’d just had the willpower to finish it. Not saying it’d be published – it certainly wouldn’t, as it’s rather unoriginal -, but well.

I keep remembering that Stephen King quote in DIY MFA about how you need to write 2000 words a day. I know, the author said this isn’t true, but I do need to write.

Thankfully, I do write. I got a premium subscription to Day One, a journaling app for iOS. Though I haven’t written in my journals everyday, I do find that the words come more easily already after a week of having it. As a result, I did write on my blog everyday for the past week. I really could use some guidance on how to transform my blogging practice into something more powerful.

Now on to the optional prompt question. It’s a quote that says that, although you may write in a certain genre, you don’t have to have that predetermined. Rather, the form or genre will find you once you write. I indeed must say I agree with this to some extent. Though I often set out to write in a specific form, my words don’t usually come out in that form eventually. Even if I do choose a genre in advance, my words often flow more easily when I let them rather than plan what I’m writing in advance.

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.

Something I Struggle With

Posted on by Astrid

A few weeks ago, Marquessa over at The Next Chapter started a writing challenge to get herself motivated to write everyday. Yesterday, I saw that Cyranny had joined in. Cyranny started with the first prompt. That one didn’t appeal to me, so I will go to the second. It is to share something you struggle with.

Regular readers may be able to guess what I’m going to share. It wasn’t the first thing that came to mind, but I got inspired by Marquessa’s post. She shared that she struggles with being called “pretty”. She then goes on to say that brains matter more to her than beauty. Well, I wouldn’t exactly say I’m the opposite, but I do struggle with being called “intelligent”.

As a child, I was often called intelligent. My parents loved bragging about my so-called genius. After I had an IQ test at age twelve, this became even worse. The IQ test, though not the first one administered to me, was the first one about which the assessor actually told my parents the exact IQ outcome. My performance IQ can’t be measured because I’m blind, but my verbal IQ was identified as being 154 on the Wechsler scale. This means I was supposedly within the highly gifted range.

As a preteen and early teen, I didn’t mind my parents bragging about this three-digit number as much. I was proud that, according to my mother, I had the same IQ as my father. Now the only time my father had an IQ test administered, he at least told me that was in the pub with a psychologist friend and he was rather drunk. I’m assuming his real IQ may be higher.

As I grew older though, my apparent high IQ more and more stood in the way of my being myself. It was frequently used by my parents and professionals to “prove” that I should be capable of solving my own problems in social situations. This got me interested in the concept of giftedness as asynchronous development. Later, I was diagnosed with autism. Still, my parents reasoned that I was just extremely intelligent.

The reason I struggle greatly with being called “intelligent” is the assumption that I am smart enough to solve non-intellectual problems. This may be so in most gifted people – I think I remember recent research disproves the theory of asynchronous development -, but it isn’t the case for me. Like I mentioned a few weeks ago, my emotional level is equivalent to someone approximately 18 months of age.

Last year, my IQ was used against me to deny me long-term care. I mean, due to my multiple disabilities and low emotional functioning level, I do best in a care setting normally catering towards severely intellectually disabled people. Because of my IQ though, I can’t get funding based on developmental disability. I am lucky that I’m blind in this respect, because I ultimately did get funding based on that.

Contrary to Marquessa, I do not struggle with compliments about my intelligence because I don’t agree with them. I mean, the IQ test I took at age twelve is rather outdated now and I scored much lower when I took another one in 2017. However, I still know I’m indeed intelligent. That being said, that’s not all I am. In the future, I’d like to be able to take pride in my intellectual abilities without them triggering the fear that I’ll need to be good at other things too.