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.

Advice to Today’s High Schoolers

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 Trip to Berlin

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

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.

Not Quite a (Traumagenic) System?

I feel so awful right now. The visit from my parents went so well and this is actually confusing me. I mean, I consider some of my childhood experiences traumatic. Quite a few, in fact. How can this be the case if I have such loving parents? I mean, yes, they’re still a bit odd. My father just talked about the birds and butterflies and flowers we encountered. He didn’t ask me any questions or share anything about himself. That doesn’t make him a CPTSD-engendering parent though.

I had a dream yesterday about me needing to take the SCID-D assessment for dissociative disorders and it came back showing that I don’t have a dissociative disorder. It was probably triggered by my having read a message in a DID support group about how plurality is now something anyone can claim because of endogenic (born multiple) systems etc. We’re not an endogenic system, but can we claim to be traumagenic? Can we even claim to be a system at all?

I mean, other than online and to a few specific people who know us closely, we don’t share our names. It could just be that I gave names to different emotions or aspects of myself that I find hard to understand. This is what my community psychiatric nurse said on our last appointment. She said the consultant recommending EMDR for my traumatic experiences hadn’t recommended any type of “deep-digging” therapy. Not that I want that, but on some deep level (no pun intended), her claim that my parts are feelings, made me feel invalidated.

I told my CPN that, whichever treatment approach I try, my parts always show up and disrupt the process. She countered that we hadn’t tried EMDR yet. I know, but this approach is known to cause worsening of dissociation in those with dissociative disorders. Can it get me to “split” even more, even if I’m not a genuine multiple in the first place?

When I shared my doubts/denial on an E-mail list for DID, someone replied that I sign my E-mails with lots of different names. Well, that’s as easy as typing on a keyboard. No-one needs to have any special characteristics to be able to do this. It doesn’t prove my multiplicity. Besides, I know there are parts and they have names, but are these parts truly differentiated enough?

In a sense, it doesn’t matter. I’m not planning on seeking a DID/OSDD diagnosis anytime soon and by the time I might have overcome my fear of psychological evaluations, I guess DID has been removed from the DSM. Either that or Onno van der Hart and other scandalous therapists have given it such a bad name that no-one in the whole country will support me. And that’s even assuming that said assessment would show some type of dissociative disorder. Then again, if I’m claiming plurality for the sake of it, am I not contributing to the stigma surrounding DID myself?

In addition to the dream I had yesterday, I have recurring dreams about my parents finding out I’m in childhood trauma survivor support groups. They always confront me and my husband always sides with them. I guess I should leave those groups in case it really happens. I mean, I’m not an adult child of normal parents, maybe, but then again who is?

#WeekendCoffeeShare (June 27, 2020)

Happy late Saturday evening everyone! Welcome to another edition of the #WeekendCoffeeShare. Today is my birthday. I think I still have tompouces in the fridge, so grab a cup of coffee, tea or your favorite cold drink and let’s catch up.

If we were having coffee, I would share that I was stressed out all week about my parents visiting yesterday. As regular readers of my blog may know, my parents are big on independence and in denial of most of my disabilities. They don’t think I should be in a care facility. Like I said yesterday though, they weren’t overly judgmental. My father made a rather bad pun on the facility’s name and my mother asked whether no-one had taught my nonspeaking fellow clients to talk, but that was about it.

If we were having coffee, I would tell you about all the lovely presents I got for my birthday. My parents gave me a drinking bottle with fruit infusion filter. I’d had it on my wishlist for years and am now loving making fruit-infused water. They also gave me a spiky or hedgehog ball. My father said it looked like a virus and my husband joked that they’d gifted me corona. Lastly, they gave me some punches, which I can use in cardmaking or other craft projects. They got these as well as the spiky ball at the thrift store.

My husband gave me a sturdy bookcase for my iPhone. It’s supposed to protect your phone against dropping from 2 meters. I’d rather not try it out though.

Lastly, my mother-in-law gifted me this giant teddy bear! It’s 1.60m tall, which is even taller than I am. I love it!

Giant Bear

I’m still not sure what to call it. I initially called it just Giant Bear, because my big panda was called Big Bear and my not even that little bear stuffy was called Little Bear. Or something. I can’t remember, honestly. Then I figured I should be calling it Joenie, which is my nickname for my husband. My husband said to call it Baloo after the bear in Jungle Book. I guess I’ll call it whatever strikes my fancy at that moment. Rainbow/Sofie, the unicorn, also has two names, after all.

If we were having coffee, I would tell you I ate some delicious Domino’s pizza this evening. My husband and I had it delivered to the care facility. I had the spicy chicken pizza and so did he, as my husband usually ends up liking my pizza more if we each order something different. I loved it! Then I had some ice cream for dessert. I got a nice present from the care facility too: a Domino’s gift voucher. I already have a reputation for eating lots of yummy food, even though today was the first time I’d ordered Domino’s since coming to the care facility last September.

If we were having coffee, I would tell you that next week, I have a meeting with my community psychiatric nurse and nurse practitioner from mental health. We’re going to discuss my possibly getting EMDR treatment for some of my traumatic experiences. Now that my visit with my parents went well, I feel slightly guilty about considering some of my experiences with them traumatic, but well.

If we were having coffee, I would report on my steps as usual. This week so far, I reached just over 60K. I managed 69K last week and am doubtful I’ll reach that this week, as I’m probably going to have a lazy Sunday tomorrow.

How are you all doing?

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.

Gratitude List (June 20, 2020) #TToT

Hi everyone! How are you all doing? I’m a bit tired, but not ready to go to bed yet. Instead, I’m going to write a gratitude list again. As always, I’m joining in with Ten Things of Thankful (#TToT). Here goes.

1. Sunshine. The weather was really good over the past week. We had some light rain some days, but most days were sunny and warm.

2. An anti-allergy medication. I have bad eczema that itched like hell for some weeks. I finally went to the doctor on Wednesday and got an antihistamine called desloratadine. It didn’t help at all the first few days, or maybe without the medication the itch would’ve been even worse. In any case, now it does seem to help.

3. An antibiotic ointment. One spot, which the doctor initially thought was the result of an insect sting, got inflamed. Thankfully, with some Fucidin applied topically, the inflammation is a lot less now.

4. The night staff. A few nights ago, the itch was so bad and the inflamed spot so painful that I got really scared. I called for the night staff to apply some oily cream to the eczema. She did this, but I remained very scared. Somehow, I had gotten it in my head that I’d get sepsis from this. I pressed the call button again at around 2:30AM. The night staff was so kind and reassuring.

5. Alternatives to bread. I don’t really care for bread for lunch, at least not when topped with the ordinary kind of things you normally put on bread, such as cheese, peanut butter, etc. Thankfully, we had some lettuce left over from making burritos last week, so I had a salad for lunch one day. Another day, I had noodles.

6. Pancakes. Today, two staff came to our home on a voluntary basis just to bake us pancakes. They were so delicious!

7. Reaching my step goal. I reached over 12K steps (my goal being 10K) on three days this week. Today, I didn’t do so well, so I will still need to get some 5K steps tomorrow to break my weekly record of just under 65K steps.

8. The visiting rules at my care facility likely being relaxed as of next week Friday. The announcement will go onto the facility’s COVID-19 page on Monday.

9. My parents offering to visit me. I called my Mom last Sunday and, as we were discussing the visiting rules, my father asked if they could come too. I initially was a bit hesitant and I’m very nervous, but also excited. They will be visiting me next Friday.

Oh, and now I can’t think of a number 10, but whatever. I’m grateful for being able to express my gratitude. Consider that my tenth thankful. Besides, the number is just a suggestion.

What are you grateful for?

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.

Expressing Faith By Expressing Anger

Last week, for some reason, I felt called to listen to a church service. When I do, I usually listen to United Church of Christ services, though occasionally I check out Protestant Church in the Netherlands services locally too. The service I ended up listening to was delivered at Mayflower Congregational UCC in the Oklahoma City area. It was titled “disorientation”.

The topic was how many Christians think they’re not healthy or whole enough to attend church. Many Christians are taught to believe that we shouldn’t show our distress or be angry with God. Though I grew up in an atheist home, I too was taught not to complain or be angry. “Gets angry easily” was often written about me in psychological reports. This may have been so, but anger in itself isn’t bad.

Rev. Lori Walke, in her sermon from May 10, talks about the psalms, nearly half of which are psalms of lament. In one of the psalms she discusses, psalm 13, David cries out to God in anguish:
“How long, Lord? Will you forget me forever?
How long will you hide your face from me?
How long must I wrestle with my thoughts
and day after day have sorrow in my heart?
How long will my enemy triumph over me?
Look on me and answer, Lord my God.
Give light to my eyes, or I will sleep in death,
and my enemy will say, “I have overcome him,”
and my foes will rejoice when I fall.” (Psalm 13:1-4 NIV)

Rev. Walke goes on to recite the rest of the psalm:
“But I trust in your unfailing love;
my heart rejoices in your salvation.
I will sing the Lord’s praise,
for he has been good to me.” (Psalm 13:5-6 NIV)

This expression of anguish shows, according to Walke, that David deep down still has faith. After all, if he didn’t believe his anger would do anything, what good would there be in expressing it? As such, those who hold their anger inside and keep silent, usually are more hopeless than those who cry out.

This is why Walke invites us all to take our troubles to church. We don’t need to put up a happy face all the time. Indeed, in our expression of anger, we also show an expresssion of faith.

This totally struck a chord with me. I was taught as a child not to express my anger. Like I said, it was said about me that I was angry too easily. When I landed in the mental hospital at age 21, I even for a while had the unofficial nurses’ “diagnosis” of “angry and dissatisfied”. While there definitely was some truth to this, stuffing my anger only fueled my hopelessness. It was in my expressing my despair that I also showed that deep down I still believed in a good outcome.

Joining in with Let’s Have Coffee.