The Summer After High School

Posted on by Astrid

It is still incredibly hot here. That is, it should be a lot cooler than it was yesterday. I’m not feeling it though. Probably my room, which is at the front of the house, keeps the heat.

I want to write, but I don’t know what about. For this reason, I looked up writing prompts for the month of June on Google. A prompt I liked is to share about the summer after you graduated high school.

This was in 2005. Man, can you believe it’s already been fourteen years? I remember finding these odd lists of things that mean you live in 2005, such as “You have lost touch with old friends simply because they don’t have an E-mail address”. E-mail is way outdated now. However, I think WordPress already existed, though I didn’t have an account. But I digress.

I graduated from high school on June 24, 2005. Two weeks prior, I had finished the assessment week at the country’s residential rehabilitation center for the blind and had been advised to attend their basic training program. It was expected that I couldn’t start until October.

However, in early August, I received a phone call telling me I could start on August 22. So that’s where I spent the last few weeks of the summer holiday and the rest of the year.

The summer of 2005 was also the summer I had a ton of health worries. Most of them were just health anxiety, but one of these scares did get me sent to a neurologist for suspected shunt malfunction. That was when I first learned about the possible impact of my hydrocephalus on my life. I never had a shunt malfunction *knock on wood*.

The summer of 2005, essentially, was the time I left my parental home and entered the care system. Even though I was supposed to get independence training, my father predicted I would never leave the care system. He was right, but so what?

Today, I had a meeting with the blindness agency which the rehabilitation center is part of to see if I can live with them. I won’t, because their living facilities are all over an hour’s drive from my husband. This meeting did remind me of how I entered the care system fourteen years ago with the aim of doing training for a year (at the center and an independence training home) and then leaving for Nijmegen to live completely independently. It didn’t work out. The disparity between this overly-normal, independent self, the one who is married now and doesn’t need help, and the multiply-disabled self, is still hard to deal with.

Summer Memories: Camping at Vlieland

Posted on by Astrid

A lot of thoughts have been floating through my mind that I’ve wanted to blog about, but I couldn’t motivate myself to actually write. I’m not even sure what about these thoughts I wanted to write, so instead, I looked up a writing prompt again. Over at Mama’s Losin’ It, one of the prompts for this week is to share your favorite summer memory. Here goes.

In the early 1990s, my parents would take my sister and me camping at a campsite called Stortemelk at Vlieland, one of the Dutch Wadden Islands. We would send our baggage there via a now no longer existent transportation company called Van Gend & Loos and ourselves travel there by train and ferry. Our parents didn’t have a car at the time. This made the journey all the more interesting, because we met lovely people on the train.

We would often meet the same people at the campsite, but also we’d make new friends each year. In 1993, when I was seven, I remember we collected shells and bird feathers and such and put them on exhibit near our tent.

In 1994, we went again and this year was the year we built a number of treehouses. I was eight at the time and my sister was six. I still had a little vision, so I was able to join in with the rough-and-tumble play of the other kids. I loved this vacation most.

After that year, we stopped going to Vlieland for several years. The reason was our move from Rotterdam to Apeldoorn, so our parents wanted to use the summers to get to know their new city. When we returned to Vlieland in 1998, it was a lot less fun. I was twelve by this time and too old for treehouses. I was also too blind. I could no longer find my way to the campsite store or anywhere on my own.

The last time we went to Vlieland was in 1999. I have very few memories of that trip. I liked going again but probably just because I was used to the routine. It was no longer fun.

Mama’s Losin’ It

#IWSG: What I Love to Read and Write

Posted on by Astrid

It’s the first Wednesday of the month and that means it’s time for the Insecure Writer’s Support Group (#IWSG) post. I forgot about it altogether until I saw another blogger post their #IWSG post.

This past month, I’ve not been writing much. I published only nine blog posts here and overall haven’t been very active in writing on the Internet at all. I did try out several new writing apps, but none suited me. Maybe that’s because I’d still have to actually have something to write on.

This month’s optional question for the #IWSG post is about your favorite genre to read and write. The question is probably mostly geard towards fiction writers, but I don’t care. I’m going to answer it anyway.

With regards to reading, the genre I read most often is memoir. However, the genre I enjoy most reading is young adult, specifically novels about social issues. I rarely read fiction geared towards older adults, though I’ve come to read it some more recently. In general, the topics I most like to read about are legal and medical issues.

With respect to writing, well, I hardly write fiction anymore, if at all. I would love to try my hand at poetry again soon, but am finding it hard to know where to start. I mean, poetry when I was a teen used to be just a story with random line breaks inserted, but that’s not what it is.

My favorite genre to write in, hence, is memoir. On this blog, I most enjoy writing the personal reflections. Particularly though, the letters I’ve written to myself have been the most interesting to write. It’s sad that my personal reflections are not among the most popular posts on my blog.

When This Is All Over: A Letter From My Future Self

Posted on by Astrid

I am feeling rather low right now. I am in fact struggling somewhat with suicidal thoughts. To motivate myself to keep going, I’m writing a letter as if it were say 2021 (because in 2021, everything will be okay) and I am writing to myself right now. In other words, I am writing a letter from my future self to my current self. Of course, in this letter, I’m assuming that by 2021, I’ll be in long-term care. I really hope and pray I’ll be in long-term care much sooner, but I know that at least they won’t be able to deny me funding by 2021.

Dear you,

I see you. I feel your pain. I understand 2021 seems like far away and I know you hope to be granted long-term care funding earlier. I know you need it. I know you’re struggling right now, seeing that your application is likely to be turned down. I know your support staff are fighting like lions to get you funding. Please appreciate that.

Please don’t end your life now. Things will get better. I am here, in a suitable supported housing facility, looking at you. Look at me and please give me a chance. I don’t want to be dead.

Please, for the sake of me, keep going. You’ve been through so much already. I know that isn’t particularly motivating to keep going, as each disappointment drags you further down the rabbit hole of depression. However, I am here to guide you through.

Please, for your husband, keep going. He loves you. He supported you through the twelve years up to this point and he’ll support you through the rest of the time needed to finish this thing.

Please, for your parents, keep going. They may see you as manipulative. They may have felt in 2007 that the main reason not to kill yourself is that they’d have to pay for your funeral. They no longer do, but they don’t deserve to be proven right about the manipulativeness. Please keep on fighting and show them you can be a happy, positive person.

Please, for your support staff, keep going. You have the best support coordinator you could wish for. She fights like a lioness for what you need. She believes you. Please don’t let her down.

I know you want to be included on the Autistic Memorial Blog if your suicide is successful. Fine by me but I’d rather you be a living person rather than a statistic on a blog. I know you say that your suicide might wake up the politicians and policy-makers involved in healthcare, but they’re already working on changing the law. They can’t speed up things just because you’re gone.

And what if you attempt suicide but fail? Then you’ll be exactly where you are now, except that you’ll be there to remember your parents being proven right about your manipulativeness. Because quite frankly, killing yourself for political reasons is manipulative. I know that, if you ultimately decide to attempt suicide, you’ll not be thinking about this, as you’ll most likely act in an impulse. However, I am here on your blog to remind you that, as shit as this may be, suicidality won’t get you what you want, or even what you need. Look back at yourself in 2007 for that. You might get temporary relief from the current situation, but it won’t last and you won’t be relieved from yourself, except if you truly die. Which I know isn’t what you want or need either. Please, stay safe.

Me

A Beautiful Memory: Clowns

Posted on by Astrid

It looks like, even though I’m still depressed, I’m getting a little bit of my writing mojo back. I have at least been commenting more on other people’s posts and feel like I want to write again. I was inspired to write this post by a question over at Pointless Overthinking. The question was about your most beautiful memory from last year. In 2018, my most beautiful memory was of saying goodbye at my old day activities. I already posted about that when it actually happened though. For this reason, I’m choosing another memory to share.

On November 23, 2017, my old day activities organized a “day out” for all clients. The reason it was called that was because they get money to take each client on an outing each year. This hadn’t happened in years though and, with many clients being profoundly and multiply disabled, it would’ve been hard. Instead of going out with those who could do this, the staff chose to have a “day in”. They organized for two clowns to visit the center.

I attended the group for profoundly and multiply disabled people at the time. I am not profoundly disabled, but I most enjoyed the sensory activities at that group. The clowns visited us and started interacting with the clients. None of the other clients can talk, but they thoroughly enjoyed it. So did I.

In addition to the clowns visiting, the staff had organized for a snack and fries delivery truck to come by. The clients at my group couldn’t make it clear what they wanted from the truck, so at first I too was just given a particular snack. When I discovered you were actually allowed to order your own snacks and fries, and as much as you wanted, I joined the people at the more able industrial group to fetch myself snacks. It was a ton of fun.

I was reminded of this day a few weeks ago, when a staff’s ddaughter visited us practising as a clown. She was in the process of auditioning to become a hospital clown and wanted some practice. She was really good. Unfortunately, she didn’t pass the auditions though.

A Timeline of My Mental Health

Posted on by Astrid

And yet again, I did not write for almost an entire week. My cold is gone, but now I’m fighting the strong pull of depression. I’m having really dark images in my mind, particularly at night. During the day, I can manage, but often feel too unmotivated and/or uninspired to write.

For this reason, I dug up one of my many collections of journaling prompts. A prompt that spoke to me is to draw a timeline of my life. I’m pretty sure I did this already, but can’t remember whether it was here or on one of my old blogs. I searched this blog for “timeline” and nothing came up, so if this is a duplicate post, I’m sorry. I think I wrote a timeline of my mental health on my previous blog in 2015 or 2016, but I’m just going to write one again.

2006: This was when I entered mental health services for the first time. I had my first appointment with a psychiatry resident on December 12. I was very nervous and could hardly speak a word.

2007: The most eventful year. First, in March, I got diagnosed with autism. I started treatment with a community psychiatric nurse. In July, I started my first psychiatric medication (other than sleeping pills for a while in 2006), an antipsychotic called Risperdal. This was a week before I moved out of independence training to go live on my own. In October, I stopped my antipsychotic again. In November, I landed in a suicidal crisis and was hospitalized.

2008: I remained on the locked acute unit for this entire year. Various follow-up placements were discussed, but none wanted me.

2009: I moved to the resocialization unit.

2010: I got diagnosed with dissociative identity disorder and PTSD in addition to my autism. I started medication again. First, just Abilify (an antipsychotic), but then, Celexa (an antidepressant) was added. I also was put on the waiting list for a workhome for autistic people.

2011: The workhome didn’t work out (no pun intended). Other options were unsuitable for various reasons.

2012: I started to think that maybe I could live with my husband. This wasn’t because I really wanted it (or thought I could do it), but because every other option seemed to have been exhausted and at least my husband wasn’t going to refuse to be with me for needing too much care.

2013: I moved to the hospital closest to where my husband and I had rented an apartment. This was one of the biggest mistakes I’ve made in life. First, my diagnosis of DID and PTSD got changed to borderline personality disorder. This should’ve been a warning sign.

2014: I had to change psychologists. My new one said at our first appt that she didn’t believe I’m autistic.

2015: My husband moved to our cuurrent house. I tried to arrange to be transferred again, but this was refused by my social worker and psychologist. I tried to make arrangements to be placed in supported housing in my new area, but got told that the train has to move on and I had to live with my husband.

2016: My autism diagnosis got removed and replaced by dependent personality disorder, BPD traits and depression not otherwise specified. The process by which this diagnosis came to be, was the weirdest I’ve ever seen.

2017: I got kicked out of the hospital with almost no after care. In my final week, I got some day activities arranged, but that was it. Thankfully, I did get my autism diagnosis back after seeking a second opinion. My current treatment team agree with this diagnosis.

2018: I had a mental crisis at day activities and was told I had to leave that place. Thankfully, I found another place. I started dialectical behavior therapy and movement therapy, but quit again too because I couldn’t really apply what I’d learned. I finally got put on an effective dose of my antidepressant.

2019: I currently get only suppportive counseling with my nurse practitioner. I still take the high dose of both Abilify and Celexa. Would someday like to lower my Abilify dose, but that’s something for the future.

#IWSG: Post-A2Z Ramblings

Posted on by Astrid
IWSG

And yay, it’s May! It’s time for the Insecure Writer’s Support Group (#IWSG) day again. As you may have noticed, I didn’t write for the past few days. As such, I didn’t finish the A to Z Challenge. I am still thinking of doing at least the letter Z post, for which I have a cool theme.

The reason I didn’t finish A to Z is that, on Saturday, when I was supposed to do the letter X post, I was off to my parents’ all day. I didn’t get home till past 11PM and, though I had my phone with me, I didn’t really have time to write at my parents’. That’s a good thing in a way, in that I didn’t feel the need to retreat. Usually I do feel that need, as I find conversing in general and with my parents in particular challenging. Now, not so.

I had a good visit with my parents. No hard questions. We did discuss my life a bit, but mostly it was about my premature birth and what has become of my treating neonatologist. I think I mentioned in my letter Q post that I wasn’t even sure he’s still alive. Well, he is, as he’s still a member of the Dutch Pediatric Society. I assume he no longer practises as a doctor though.

Then on Sunday, I felt just too tired to write. If it had been an easier letter I’d have to write on, I might’ve found the motivation to catch up that day, still giving me two days to complete my letter Y and Z posts. Well, it didn’t happen. Then on Monday, I spent the day at day activities and then was off to my in-laws. Yesterday, I started to write a different post, but got frustrated with my Mac and iPhone again, so I didn’t write then either.

My husband encourages me to finish the challenge late, so that at least I have some sense of succeeding rather than feel I failed the challenge yet again. I understand his point of view, but I have several other posts I want to write. So, we’ll see.

Who Am I Right Now?: Exploring My Identities #AtoZChallenge

Posted on by Astrid

Welcome to day 23 in the #AtoZChallenge. I had a topic for my W post in mind for a few weeks, but then wasn’t sure whether to pick that one. I am doing so anyway. Today, I am exploring the things that make me me. My “identities” can, of course, refer to my alters too, but I covered that topic in my letter M post already. Today, I am exploring my different roles.

I am a daughter. My parents are still both alive. I was a granddaughter (and some would say I still am), though my last living grandparent died in 2018. I am a sister and an aunt-to-be, since my sister is 20 weeks pregnant.

I am a wife. I have been together with my husband nearly 11 years and married over seven. My husband is by far the most important person in my life. Through him, I am also a daughter-in-law and sister-in-law. My mother-in-law is the second most important person currently involved in my life.

I am a blogger. I’ve had one blog or another ever since 2007 and really have been an online writer since 2002. I am also an author, though I’ve had only one small piece published in an anthology. It makes me proud nonetheless.

I am an advocate. Though I don’t engage in as much activism as I used to about ten years ago, I still consider myself a disability, mental health and autistic rights advocate.

I am a believer. Though I subscribe to “something-ism”, it does help me to feel connected to a higher power.

I am mentally ill. I am autistic. I am blind. I am multiply-disabled. I am a benefits claimant. I am a service user at a day center for people with intellectual disabilities.

These last few identities may be the most defining of me when I tend to introduce myself. That’s why I listed them last here. I need to learn to focus on the others.

Voice: Expressing Myself Through This Blog #AtoZChallenge

Posted on by Astrid

Welcoem to the letter V post in the #AtoZChallenge. This letter was very hard. No topic came to mind spontaneously, except for “vision loss”, which I already covered in my letter B post. So I looked at a book of journaling prompts which has, among other things, a prompt for each letter of the alphabet. The prompt for V was “Voice”. The attached question was to write about something you’ve always wanted to tell someone. I am instead going to write about the way I use this blog to express myself.

When I started this blog, I intended for it to be as free and open as a public place on the Internet could be. I didn’t want to feel limited by beliefs about what should be blog-worthy. In a way, I wanted this blog to be as authentic as my first online diary was, before I knew the impact of sharing stuff online. I would, of course, take care to avoid using people’s real names – something I didn’t do back then -, but I would not keep much hidden to prevent getting criticism.

Now, nine months on, I must say I reached this goal most of the time. Of course, there are still things I don’t share on here, but those are things that shouldn’t go on the Internet at all mostly. Like, I don’t go about describing an argument I had with my husband. In this sense, it is good that my blog isn’t like my first online diary, in which I did describe every argument with my parents.

I still do care a little about the quality of my posts, but that’s not bad. I mean, maybe I wish I were as open as some of my online friends are on their blogs, sharing stuff I share in small E-mail groups on here. That probably won’t happen. My inner critic is too harsh for that, and I don’t even know whether that’s a bad thing.

Unusual Interests: Calendar Calculation and More #AtoZChallenge

Posted on by Astrid

Welcome to day 21 in the #AtoZChallenge. Today, I will be writing about my unusual interests. You see, like many autistic people, I tend to have interests that are intense and unusual in focus.

As a child, I was advanced for my age in math. When I was around six, my father taught me to do square and squareroot calculations. He used a set of squares (which were really computer chips) to teach me, laying three in one row and then squaring it to nine. I loved this.

When I was eight and the kids in my class were doing multiplication tables, this would be boring to me, as I had all tables from one to twelve memorized already. To make the activity useful for me anyway, I chose to start with the table of nineteen. Don’t ask me why I skipped thirteen to eighteen, but I did.

When I was a bit older still, I taught myself to do calendar calculation. Most people not familiar with autism I encounter have never even heard of that skill, which is a common savant skill in autistics. It involves calculating on what day a certain date falls. Usually, this skill is presumed to be memory-based, but I actually knew the rules for doing it. I also learned about the change from Julian to Gregorian calendar in 1582 and took those ten days that were skipped into account when working with dates before then. I have a newspaper article from late 1999, which I still treasure, titled something like “the fight about time” in Dutch. It explained why the year 4000, unlike other centennial years divisible by 400, shouldn’t be a leap year. How fascinating!

Later, I developed other “unusual” special interests. For example, I used to draw maps when I was around ten or eleven. I always drew Italy, though I knew a lot about topography in general.

When I was in the psychiatric hospital and touring potential supported housing places, I had no idea about their location, except which trains and buses to use to get there. I wasn’t as good with topography anymore. I at one point had most bus routes in my province memorized from Wikipedia.