Truthful Tuesday: Birthdays

Posted on by Astrid

Hi all! It’s Tuesday and I’m feeling a little better still than I was yesterday. I’m still having a cold, but it’s mostly manageable now.

Today I’m participating in Truthful Tuesday. This week’s question is: as you have gotten older, do you still celebrate your birthday, or has it become just another day to you?

The presumption behind this question is that, as we get older and the effects of aging become less positive than they were when we were a child or teen, some people no longer appreciate their birthdays.

I find, and maybe this will change when I get even older, that the opposite is true. I will be 35 in June and have found that, with increased age, does come increased wisdom. I am probably not old enough yet to start feeling depressed about my life’s regrets. That doesn’t mean I don’t have many, but they don’t weigh me down that much as of yet. I hope that won’t come either, but I’m pretty sure it will.

In contrast, when I was a child, I feared growing up. My birthdays were fun because of the gifts I got, but that’s about it. I never felt that flash of excitement that some children and teens feel as they get older. No, not even (or especially not) when I turned twelve, sixteen or eighteen.

When I turned 30 in 2016, I did have some mixed feelings. I was excited to be allowed into the over-30s groups on Facebook but also felt that, at my age, I could no longer have emotional outbursts. I still did. That latter feeling subsided over time though as I realized a neurotypical ten-year-old wouldn’t have meltdowns like mine.

My birthday has always been an exciting yet stressful event. Now though, it’s more exciting than stressful usually. My parents don’t make a point of telling me to act grown-up anymore. For this reason, them visiting me for this occasion – usually the only time a year I see them in real life -, is mostly fun.

I do indeed still celebrate my birthday. Months in advance, my husband starts asking me what I want for my birthday. It’s also a bit of a tradition that he takes the week around my birthday off from work.

Most years, I spread out my birthday party over several days, as I don’t want to have the house full of visitors. Last year, the visiting restrictions due to COVID were lifted the day before my birthday. This meant that my parents could actually take me out for a ride in their car rather than having to sit in the care facility’s garden for the entirety of the visit.

My mother-in-law visited me the day before and brought me the giant bear soft toy. That’s another thing that makes birthdays fun: I love getting gifts. Of course, I can buy myself the things I really want too, but I actually like the fact that people give me something I wouldn’t buy myself.

Maybe, now that I’m inn my thirties and don’t have to act grown-up, as I’m on disability and in long-term care, I can finally feel the excitement of being a kid at heart.

Places I and My Family Have Lived

Posted on by Astrid

Today, I once again looked to a book of journaling prompts for inspiration for a blog post. One of the prompts in the first chapter of Journal Writing Prompts for Child Abuse Survivors is to list all the places you’ve lived. There may not be any need to elaborate on them, but I am going to share my thoughts and feelings that come up. For this post, I’m just going to talk about the houses I lived in with my parents. Otherwise, this post is going to be way too long.

First up is my parental house in Rotterdam. My parents bought the house a year before I was born. To be quite honest, I have very few memories of this house, even though I lived there until I was nine. I do remember my and my sister’s bedroom, which had a bunk bed in it. My sister slept at the top and I slept at the bottom.

I don’t remember most other rooms in the house. I know my parents must have had a bedroom, but I can’t remember its location relative to the kids’ bedroom.

I do remember the garden. It was small, but still big enough to play in. It had swings and a sandpit. I loved to play here with my childhood friend Kim.

I also remember the neighborhood. I played in the “thick street”, a square bit of pavement between two blocks of houses. I also often went to the playground across the road from there. When I had lost some of my vision at around age eight, I felt too scared to cross the road.

Like I said, I lived here until I was nine. Then, my family and I moved to Apeldoorn. We moved to a quiet neighborhood. The house we moved into, had a large kitchen-diner and a living room downstairs. We called the living room the “library” because it housed my mother’s huge book collection. Upstairs where three bedrooms, two large and one very small. One was my parents’ bedroom. The small room was my mother’s office, while the other large bedroom was my father’s.

My sister and I each had a bedroom in the attic. I remember not wanting to have my own bedroom at first, probably because I was used to my sister’s company when going to sleep. I eventually grew to like it though. I had the same bed for all of the years I lived here, one of the original bunk beds. My sister claims I got hers and she got mine after the move.

The other two smaller rooms in the attic were a laundry room and a guest bedroom.

We had a large garden. The first summer we lived here, my paternal grandma gifted us a wooden play set that had swings and climbing equipment. I could be found on the swings many hours each dry day until I was at least fourteen.

During the first few years that I lived in this house, I loved exploring the neighborhood. It had at least four playgrounds within a five-minute walking distance from my home. I would often roam about trying to find new playgrounds farther and farther off. When I lost more of my vision at around age twelve, that mostly stopped. Besides, of course I was too old for playgrounds then. I still went to the nearby shopping center regularly, often getting lost on my way.

I generally really liked the house in Apeldoorn. When my parents were trying to sell it and my husband and I were looking for a home, my parents initially offered it for rent to us. We however had the provision that it’d go off the market for a while. Of course, this wasn’t really reasonable. My parents sold the house in December of 2013. I am glad in a way now that they did, as now I have no need to be reminded of the house and my childhood when I don’t want to be.

Gratitude List (March 5, 2021) #TToT

Posted on by Astrid

It’s Friday again and I badly want to write. I’m feeling quite distressed by emotional flashbacks right now. To turn my mood around, I thought I’d do a gratitude list again. As usual, I’m joining in with Ten Things of Thankful (#TToT).

1. I am grateful to live in a care facility. I feel very insecure about my living arrangement right now, but my staff reassure me that I don’t have to leave. I am so extremely grateful for my staff’s patience with my anxiety!

2. I am grateful my staff make sure someone comes to sub when a staff is ill or has other obligations. Today, my day activities staff had to leave unexpectedly at around 1PM, but the staff made sure someone came to take her place. In the psychiatric hospital, we’d just be left with fewer staff if this happened.

3. I am grateful for chicken Siam. A fellow client and staff cooked that up for this evening and I totally love it! This client can’t have the cashews that normally go in, so there’s more left for me. 😉

4. I am grateful I got my second shot of the vaccine yesterday. I am also grateful that I didn’t experience any side effects. In fact, I hardly even felt the needle go in, so worried at first that they were doing something wrong. I try to trust that I got the vaccine correctly though.

5. I am grateful for God’s presence in my life. I have been extra involved with my Bible reading lately. I am grateful I finally figured out how to bookmark, highlight or copy verses in the YouVersion app and how to add notes or prayers.

6. I am grateful for all the lovely treats the staff who left our home last week, left for us. We had winegums, candy bars, ice cream and more.

7. I am grateful for no rain this week. It’s cold outside, but usually sunny. For this reason, I was able to get in over 10K steps each day of the week so far (not counting today, but I will later).

8. I am grateful I’m done with dentistry appts for at least another several months. My experience at the dentist’s was pretty bad last Tuesday, by no fault of the dentist. Let me just say I’m glad I’ve got it over with.

9. I am grateful I got to talk to my parents on the phone on Monday and that they are well. I had a nice chat. I will need to phone my sister later too. My parents were going to visit her and her family on Tuesday.

10. I am grateful for the ability to chat to other clients, including those from other homes within my care facility. I chatted some with a guy from the home next to us while we met outside of the day center a few days back. We used to go on walks together with the staff and also have coffee at each other’s homes, but due to COVID restrictions we no longer can. I am looking forward to being able to hang out more with him and other clients once the restrictions are lifted.

Wow, this turned out much better than I expected and it certainly did help.

What are you grateful for?

When I Was Fifteen

Posted on by Astrid

One of Mama Kat’s writer’s workshop prompts for this week is to explain how a parent or sibling would’ve described you at the age of fifteen. What an interesting thing that Mama Kat should mention age fifteen!

I turned fifteen in June of 2001. By August, looking back, I was close to insane mentally. This was the summer when I first realized I had alters inside of me, although I didn’t know what they were at the time. I just heard some type of voices that were and at the same time weren’t mine.

Neither my parents nor my younger sister knew this at the time. Still, they did realize something was up, if for no other reason, then because I didn’t care about school. I had always been a pretty studious kind of child, but this changed by November or December of 2001.

In addition, I was a rather angry, moody child. I had suffered from depression on and off since age seven or so, but it was particularly bad at age fifteen. I even made suicide plans several times during that year. My parents, being the type to dismiss mental health issues, felt I was just attention-seeking, of course.

My life turned around in a sort of positive way a few weeks before my sixteenth birthday, although no-one saw either the change or how positive it was at that point. On June 16, 2002, my father called me autistic as an insult. This led me to search the Internet for autism and to discover I may be on the spectrum myself. Although it’d take nearly five more years before I was diagnosed, in part because my parents and teachers didn’t believe me, I see this as a pivotal point in my life.

The day after this, June 17, I finally disclosed to my teacher what had been bothering me over the past year. I sugarcoated it a little, not mentioning the voices or suicidality or autism for that matter. I did tell him I was struggling with being blind in a mainstream school and that I realized I had been less than good of a student lately.

My father, at the time, worked at my school. My teacher told him that I had disclosed something to him, but he refused to tell my father what it was. This led to a really traumatic experience, because my parents demanded to know too and they weren’t kind about it at all. I am pretty sure they just tried to gain fuel for their idea that I was one giant attention-seeker.

Many years later, my parents used many of my struggles at age fifteen to “prove” this very point. I can see their perspective, sort of. Thankfully though, my current professionals don’t go along with it.

Mama’s Losin’ It

A Favorite Childhood Gift

Posted on by Astrid

One of Mama Kat’s Writer’s Workshop prompts is to share about a favorite Christmas gift you received as a child. Here in the Netherlands though, Christmas isn’t that popular for gift-giving. Instead, we celebrate St. Nicholas on December 5. I can’t remember that many gifts I received for St. Nicholas and the entire celebration was one big stressor once I no longer believed in St. Nick. We celebrated it until I was 20 in 2006. Then in 2007 I was in the psych hospital and my parents didn’t want to risk inviting me. That’s how the tradition ended.

The other major gift-receiving opportunity was and still is, of course, my birthday. It is on June 27, so pretty much as far from Christmas as you get it. Still, I’m going to share about a favorite gift I received for my birthday as a child. Mama Kat twisted the prompt too by listing several things, so oh well.

I can’t remember whether I had invited anyone to a birthday party when I turned eleven. After all, I was pretty much friendless at the time. However, I did celebrate it with my family. The main gift I remember getting was a Barbie doll with aerobic attire. I named her Teresa. I loved the doll, even though I knew already that eleven was a little old to play with it.

Later that summer, my mother took me on a “mother-daughter walk”, which was mainly an opportunity for her to tell me the school had recommended I go residential there. She claimed the reason was that I had behavior problems, which she attributed to my having too many toys. I can’t follow that train of thought other than through some idea that I was so spoiled I somehow felt entitled to have tantrums. That wasn’t true, for clarity’s sake. In any case, my mother regretted having given me the Barbie doll.

I cherished Teresa even more from that moment on. When, during the following school year, I’d have a meltdown, my mother would often pack a random number of toys and claim to throw them out. (In reality, she hid them in her room downstairs.)

The followign year, when I turned twelve, I felt so ashamed for still playing with Barbie dolls that I claimed they’d aged with me, so it was okay. Most of the dolls are still with my parents, I think. I think at one point I broke Teresa’s leg though and had to actually throw her out.

Mama’s Losin’ It

Some Might Say: Judgments About Me #Blogtober20

Posted on by Astrid

Okay, I said I wasn’t going to take part in the #Blogtober20 prompts anymore, but this one did speak to me. Today’s prompt is “Some Might Say”. People can be incredibly judgmental. Today, I will write about some things people have said about me that indicate they are clueless or insensitive or both.

The first things people notice about me, are my blindness and the fact that I’m relatively well-spoken. This often leads people to assume that I either should be able to be independent or that I am obviously not because I’m blind.

My parents and other people who are relatively educated about blindness, often assume that I should be able to live independently and be employed. Even if they are fine with my “choice” of not pursuing a career, their idea of me is to live independently. Some people who don’t know me that well, ask whether my husband and I have or want kids. To me, it’s obvious that we don’t, but then again that may be internalized ableism. After all, I for one am not able to take care of kids, and besides I value my freedom. Others with my disabilities may definitely be able and willing to parent.

Another judgment I often get is that my marriage isn’t strong because we don’t live together. My last psychologist at the mental hospital even dared to say my marriage isn’t worth anything if I don’t intend on living with my husband. Well, when we got married in 2011, we had zero intention of living together. I was on the waiting list for a permanent workhome for autistic people. It is only because that didn’t work out, that my husband asked me whether I wanted to live with him. And just so you know, our reason for getting married is that we love each other and want to show each other that this is for life. And in my opinion, that’s the essence of marriage. Okay, I know that at least a third of marriages end in divorce, but I hope that if couples get married, they at least hope this is going to be for life.

Like I said, some people, particularly strangers who are clueless about disabilities, think that it’s perfectly understandable that as a blind person I live in a care facility. This misconception often feels as uncomfortable to me as the idea that I am or should be independent. I used to want to educate people that most people who are just blind, can live independently. I no longer do this though. Not only is it none of random strangers’ business that I’m not just blind, and isn’t it my obligation to educate, but I might also be adding to the stigma I fought so hard against as a teen.

By this I mean the National Federation of the Blind’s philosophy that blindness shouldn’t hold you back. It in fact used to say that the average blind person is just as capable as the average sighted person. That led to the idea that, unless you had severe or multiple other disabilities, you were to be pushed to achieve whether you could or wanted to or not. That just doesn’t work for me and it doesn’t work for many blind people.

#Blogtober20

Millennium: Growing Up Blind in 2000 #Blogtober20

Posted on by Astrid

I’m a bit late to publish my #Blogtober20 post today. Well, not as late as yesterday, but then I already had a post up in the afternoon. Today’s prompt is “Millennium”.

Let’s see… we’re now 20 years into the new millennium, which I realize isn’t even the “new” millennium to some adults right now, as they were born in 2000 or later. I always find it surprising that there are people who will be legally old enough to vote in next year’s national election who weren’t even born when politician Pim Fortuyn was murdered on May 6, 2002. Yeah, I’m getting old!

In 2000, I turned fourteen. I was in my first year at a mainstream grammar school. I had already decided I hated it, but my parents and teachers had decided that, if I failed, I’d fail within the first three months and those were up. Woohoo, my mainstream education was a success! Okay, it was, since I did graduate with pretty good grades in 2005, but yeah.

In January of 2000, I suffered a bad case of the flu. I rarely got the flu back then and still get it only once every five years or so, so I remember. In fact, I’m not 100% sure of this but I think it was my only time being off school sick in my entire grammar school career.

In February, my outreach teacher for the visually impaired came to talk to my classmates. They had already decided they didn’t like me one bit. In fact, when the teacher asked casually what having me, a blind student, in their class evoked in them, they didn’t think of a single positive. They started saying that I was being favored by the teachers. They also resented the need to help me get around. This instilled in me the feeling that I had to make up for my blindness in some way by being extra, well, anything.

I had read a book called Het instituut (which translates to The Institution) by blind comedian Vincent Bijlo in 1998. This book is about a boy who goes to a boarding school for the blind and his teachers constantly instill in him the idea that the “sighted school” is really hard and that he’ll need to compensate for his sight loss. For all I knew, my parents and teachers at the grammar school agreed: I was an inherent burden due to my blindness unless I showed my classmates I was more independent, nicer, more hard-working and in any way better than them. Then when I tried to work hard and got good grades, my classmates decided I must be favored by the teachers.

My idea about myself as an inherent burden on the world around me due to my blindness didn’t change till I went to an international computer camp for the blind in 2002 and discovered the English-language Internet in that same summer. It never completely disappeared though.

Later in the year 2000, my classmates started openly bullying me. Again, my parents and teachers blamed me. I was too dependent, too unsociable, too much of a burden in general. I had ruined the only friendship I had developed (which in hindsight was based on pity mostly) by getting my “friends” an only average grade in a music performance in October. Though these girls didn’t actively bully me, they mostly ignored me.

I realize, looking back, that the attitude towards people with disabilities was generally very hostile back in the late 1990s and early 2000s, when I was growing up. I mean, I bullied a girl with a visual and intellectual impairment on the special needs bus to the school for the blind in the late 1990s. Though my parents disapproved of it, both they and my teachers didn’t do much to stop me. When this girl was dying of a brain tumor, my parents even openly criticized her religious parents’ hope that the girl would miraculously survive.

I can only hope that, with more children with significant disabilities being mainstreamed nowadays, that attitudes have changed.

#Blogtober20

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.

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 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.