Monthly Archives: April 2018

Rays of Sunlight – April 2018

It’s been months since I last posted a list of things I’ve liked and loved, otherwise known as my Rays of Sunlight post. In fact, it’s been over a year, although I did post some positive posts more recently.

April 2018 was really a mixed bag. I’ve been struggling a lot, but there were also lots of positives. Today, I’m sharing these positives.

1. The beautiful weather. Today is a cloudy day, but last week, I was actually able to wear a skirt for the first time this year. It was over 25 degrees Celsius and sunny. I loved it!

2. My mood improving. I mentioned this in my gratitude post as part of the #AtoZChallenge already. Now that I’ve been on the increased dose of my antidepressant for over three weeks, I think I can sincerely say it’s helping some. I am not over the moon happy, but then again I didn’t believe I’d be. Instead, I feel calmer and a little more able to handle stressors such as my husband being home late from work. It’s still hard, but I’m less likely to engage in self-destructive behaviors. Yesterday, for example, hubby wasn’t home till 8:30PM and I felt quite stressed. However, instead of doing something self-destructive, I called the on-call nurse at the mental hospital.

3. Cuddling with my stuffed animals. I have five stuffed animals in our bed. Until recently, I didn’t know how to arrange them cofortably and still have space for myself and my husband to sleep. Now I seem to have figured it out. I love to cuddle with my stuffies just before going to sleep.

4. Nice wax melt scents. I rediscovered my wax melts on Wednesday. I don’t know which I have in my warmer right now, as I opened it when my husband was at work so couldn’t ask him to read the packaging. I love the scent though.

5. Beautiful music. Thanks to My Inner MishMash, I rediscovered Cara Dillon. She is an Irish singer and I just love her music. It’s so relaxing.

6. Kindle. On Saturday, I had a meltdown because Adobe Digial Editions, which I use for reading eBooks from Kobo, was once again crashing on an eBook I had just bought. I tried out Kindle with some free eBooks then. Amazon only accepts credit cards as payment, which I don’t have, but my husband has said I can use his if I can make Kindle work. With my version of JAWS, my main screen reader software, it isn’t working that well, but with NVDA, a free screen reader, it is. Kindle also works on the iPhone. I am loving the free children’s stories I downloaded. I may write a full review soon.

A Cornish Mum

The Five Most Significant Events

Oh my, why can’t I seem to write when I truly want to? I mean, I feel uninspired, but then again I have a lot of collections of writing prompts. I have at least three eBooks full of writing prompts, a few collections downloaded from the Internet and even an app on my phone. From this app, Paperblanks, comes the prompt I’m going to journal on today. The prompt asks me to name the five most significant events of the first 25 years of my life.

This is going to be really hard, as I’m supposed to name just five. The last nearly seven years do not count, so I cannot mention the day I finally left the psychiatric institution or even the day I got married. I am however more tempted to write on more recent events, whereas my childhood was important too. I just don’t remember it that well.

1. The day I came home from the NICU, September 29, 1986. The first one, hence, is going to be one I have zero memory of but that shaped me for the rest of my life. After all, if I’d not made it home from the hospital at three months of age, I may not have been alive or able to share my story today. I came home on my due date.

2. The day I started in special education, May 11, 1992. I had to leave Kindergarten at a mainstream school before the year was over. Till this day, I don’t know why. My parents claim that the reason I had to transfer to the school for the visually impaired is my need to learn Braille, which I didn’t get to learn until more than a year later. They also say my Kindergarten teacher wouldn’t be able to move to first grade with me and no other teacher could teach me. However, then why did I have to leave so suddenly? In my memory, I was ill shortly before leaving the mainstream school, but I don’t know what that has to do with it, if anything.

3. The day I started back in mainstream secondary education, August 25, 1999. This day is significant because it shows my ability to be determined. A lot of people say I’m not determined at all and give up way too easily, but I did complete the full six years of my level of secondary education even though I hated it. I don’t think my parents deserve all the credits for this.

4. The day I started in rehabilitation for my blindness, August 22, 2005. This day is significant because it symbolizes my self-direction. It was the first time I decided I wanted to work on my own goals rather than those set forth for me by my parents.

5. The day of my admission to the mental hospital, November 3, 2007. Do I really need to explain? This day symbolizes my ultimate break-away from my parents’ power over me. Even though those 9 1/2 years in the institution weren’t too productive, I don’t regret having agreed to be admitted at all.

DIY Daddy

Play

And I didn’t continue with the #AtoZChallenge after all. Now I could write my Q post today and just have enough time to get to Z on April 30, but I have no clue what to write about that starts with Q. Besides, I’d just be too behind. I will continue with random reflections whenever I can, but I’m tiref of sticking to the alphabet. At least, the challenge so far taught me that I can, in fact, write a blog post almost everyday.

A few minutes ago, I looked at the friendly fill-in questions for this week. I’m not inclined to join in with the thing in a traditional way. However one of the prompts stuck out to me. It was: “When I was a child, I loved to play ___”. Today, I’m going to write about the joys of playing as a child (and as an adult, too).

As regular readers know, I’m autistic. However, when I was a toddler, I wasn’t the type to line up my toys. In fact, at about age three, I had three PlayMobil figures called Pekel, Foet and Laren. No, these aren’t common Dutch names. The characters would just eat, drink and go to the toilet. Nothing too interesting but nothing too stereotypical either.

I also loved to play outside. I loved the swings in particular. When we were on vacation at the campsite, I’d also climb a tree. I wasn’t as adventurous as my sister, but I nonetheless enjoyed getting outdoors.

One other memory that stands out is my learning to rollerskate at aroudn age eight. My next door neighbor, who was the same age as me, used to teach me and my sister and a bunch of other girls (and a few boys). It was fun until I realized how I, being legally blind, wasn’t able to keep up. Once I was about twelve, I eventually learned to rollerblade too. That too didn’t last long, as my vision became too poor.

My sister and I would play with dolls too. I’d often make up the stories. Like, we were going on vacation to Suriname with the dolls, because, you know, my sister’s doll was brown. Though I showed some level of imagination – more so than my neurotypical sister -, I could be quite controlling. For example, I’d get upset whenever my sister said “said the doll” after a sentence that the doll supposedly said.

I continued to play with dolls and Barbie dolls until I was around fourteen. By the time I was thirteen and about to transfer to mainstream school, I decided I really needed to stop playing. However, I didn’t know what else to do. Once my computer and eventually the Internet took my interest, I hardly ever played anymore.

As an adult, I had a time when my inner child parts were particularly active and I’d even buy Barbie dolls for them. They however usually enjoy stuffed animals. I still sleep wth a bunch of stuffies on my bed.

Perseverance and Procrastination (Or Their Exact Opposites) #AtoZChallenge

Welcome to my belated letter P post in the #AtoZChallenge of random reflections. I was rather uninspired yesterday. I also wanted to spend my time upping my activity as tracked by my Fitbit, so that hopefully I’d reach my 10K steps a day – which I almost did. Today too, I wasn’t feeling very inspired. I didn’t know any words with the letter P to write on. Yes, “Preemie”, but I’ve shared my birth story a dozen times already. Or “Psych”, but I didn’t know what to write about then. My husband came up with two this evening that are rather fitting: “Perseverance” and “procrastination”.

I am both quite perseverant and a terrible procrastinator. How can this be? I guess because, though I tend to take frequent breaks in my activities, I almost always manage to carry on after all. This blog post is living proof of that.

Then again, this combination of perseverance and procrastination can also backfire, as I tend to have rather rigid rules about when I can and can’t keep up with some work. For example, if I haven’t posted on a blog for an entire month, I say I have to give up on the blog. This has gotten me to abandon and restart my Dutch blog at least half a dozen times within the past four years. Thankfully, I still manage to keep up with this English blog.

Like I said in my letter N post, I like my perseverance when I’m passionate about something. This perseverance however can backfire too, as I get too obsessed and then am left with lots of stuff and lots of money gone for my special interest when I lose interest again. For example, I probably spent 500 to 1000 euros (closer to 1000 probably) on cardmaking supplies in the year that I was obsessing over cardmaking in 2012. I want to think I didn’t spend as much on soaping supplies in 2016 and I want to think I’ll still pick up that craft. I’m so glad blogging, at least in my style, isn’t as expensive.

As I look back over my post though, I realize maybe here I described the exact opposite of perseverance and procrastination. After all, I jump head first into an interest without procrastination, but once I lose the interest, I don’t really persevere. Sometimes I do, but, except with blogging, I sooner or later always give up.

Over: The Part of My Life I Consider Truly Over #AtoZChallenge

Welcome to day 15 in the #AtoZChallenge. I typed yesterday’s post rather quickly, so that a typeo ended up in the post title. Sorry for that. Today’s letter is O and I have once again chosen a prompt from the 397 journal writing prompts and ideas eBook. It is “Over” and asks me to write about what time of my life I consider truly over.

Last November, I celebrated ten years since my psychiatric crisis that got me admitted to the hospital. I resolved to look to the future from then on and have a positive outlook on life. Indeed, it is unlikely that I will ever be admitted back into a psychiatric hospital even if I land in a similar crisis to the one that got me admitted in 2007. Psychiatry has changed, after all. As such, I consider my psychiatric hospital life truly over.

That being said, the memory is still too fresh to truly close the chapter. So I’ll have to look back at another time in my life that I consider truly and well over. This is my time in high school.

I graduated from high school in 2005. This is thirteen years ago this year. Though I still can’t say I never remember my high school days anymore, I do consider this time of my life really over. I mean, even if I end up in an institution again – which is possible, even if it’s unlikely -, I will never go back to high school. I graduated that, so I won’t have to.

This is also the most recent “success story” in my life. Yeah, I know, leaving a mental institution after 9 1/2 years is a greater accoplishment, but that’s not “normal” success. My parents show pride in my having graduated from high school. They don’t show pride in my living with my husband.

Because of this, my high school days also are symbolic for my obeying my parents’ wishes for me. I don’t do that now. Letting go of my high school years means letting go of the need to meet up to my parents’ expectations. They are not realistic and besides, I don’t live for my parents. I live for myself.

Neurodiversity: What I Like About My Neurodivergence #AtoZChhallenge

Welcome to day 14 in teh #AtoZChallenge. Phew, I completed half the challenge already. Today’s letter is N and my word for today’s post is “Neurodiversity”. Neurodiversity is the concept whereby people with different neruologies, such as autistics, are still equal. People who support neurodiversity value autism and other similar conditions as neurological variations rather than disorders.

I for one appreciate neurodiversity. I am not a radical supporter, as I do see autism and such conditions have clear disadvantages. However, I support the social model of disability in this respect. As such, I see autism as a disability, not just a difference, but not a disorder either.

I am neurodivergent. I am formally diagnosed autistic and self-identify with a couple other neurodivergent conditions. Today, let me share what I like about my neurodivergence.

First, I like my ability to perseverate on things I truly feel passionate about. I do not have one special interest that I’ve had for life. Rather, I’ve had many over the course of my lifetime. However, when I have a special interest, I can really be passionate abut it. Unfortunately, I don’t have one now.

On a similar note, I like my ability to hyperfocus. If I want to get information about something, I will fully dive into it. For example, when my husband and I were discussing moving out of area, I had no trouble comparing all the community care policies for the different cities we were thinking of moving to.

I like my “splinter skills”. This is what professionals call areas in which autisitc people have a lot of knowledge that is out of line with their general intellectual ability. Though my general intellectual ability is above-average already, my calendar calculation skills at least used to be far better. They’re not as good now, unfortunately.

What special talent do you possess?

Memories: Remembering Painful Events #AtoZChallenge

Welcome to my belated day 13 post in the #AtoZChallenge of random reflections. Today, I chose yet another prompt from the 397 journal writing prompts and ideas. It is “Memory” and the prompt is to share your most painful memory. That is really hard, as I have a lot ofpainful memories and also tend to dissociate when remembering painful events. So I’m just going to ramble.

The first memory that came to mind is that of the day I was admitted to the mental hospital. This was November 2, 2007. I’m pretty sure I shared the details of that day already though, but oh well. I had been planning on returning home from my parents’ city that day, but freaked out at the train station. The police were called and removed me. I wandered through the city for a few hours. The police were called several times and instead of speaking to me, they called the training home in that city, in which I’d been a resident before moving to another city. In the evening, I was close to the training home and a fellow client called me into her apartment. She said I could sleep at hers fo the night and we would find a solution the next morning. However, the staff came in and kicked me out. That was when I spiraled into full-blown crisis. I walked to the nearby bus stop. In my memory, the sun was shining brightly, but this isn’t possible, as it was 8PM in November. I phoned my support worker and the training home’s coordinator to let them know I was going to commit suicide. This was what led the bus driver to call the police, who took me to the police station and called the crisis service.

Another memory that came to mind happened 9 1/2 years later. It was the “exit meeting” I had with my psychologist in late April, 2017. I tried desperately to get her to see that I needed support once leaving the hospital after 9 1/2 years. She didn’t see my point. Apparently, it had all been my responsibility to make sure I get after care, as I supposedly didn’t want anything. Because it was thought back then that a simple phone call to the day activiities manager for the center I go to now, would sole everything, I was given a week’s extra time. As it turns out now, the day activities manager interpreted it as me only needing day activities at his center for a short while. This is backfiring now that I’m being kicked out of there.

Both of these are not the most painful memories I have. Those are childhood memories. However, I don’t want to trigger myself by sharing them.

Linguistics and Other Things I Wanted to Study in College #AtoZChallenge

Welcome to day 12 in the #AoZChallenge of random reflections. Today once again I don’t know what to write about. I write this post at past 9PM on April 13 and am deciding what to write on as I go. I looked at the A to Z of me I wrote in 2015 and saw “linguistics” as my letter L word. This was my college major for the two months I studied at university in Nijmegen in 2007. Now I don’t know what to write about linguistics, so instead I’m going to write about the things I at one point considered majoring in. This may be going to be a long list, LOL.

1. Mathematics. When I was about eleven, I decided I wanted to become a mathematician. I barely knew math beyond calculus, but I liked that aspect so assumed I’d like everything about math.

2. Dutch. When I was in junior high school, I wanted to become a linguist, but I didn’t know the word, so I thought I’d become a Dutch major.

3. English. UPon high school graduation, I decided I wanted to study English, and specifically American studies. In Nijmegen, you could choose from your first year on to learn American rather than British English. I had a dream in which I’d go to America in my third year of university and never return.

4. Psychology. I really wanted to major in psychology, but my parents had a problem with psychologists, so I never took that step. I did major in applied psychology for a year at college when I was 20, but only passed communication skills because the instructor cut me some slack. I took psychology classes at Open University again while in the mental hospital.

5. Linguistics. I ultimately decided to major in linguistics at university. I was obviously still mostly interested in psycholinguistics and thought I might be able to enter the speech and language pathology program when I’d be a graduate student. I never made it that far, obviously.

Keys: My Time on a Locked Psychiatric Unit #AtoZChallenge

Welcome to day 11 in the #AtoZChallenge of random reflections. The letter K is really hard for me. It was everytime I did this challenge. Somehow, each word that comes to mind starting with K doesn’t seem right. For example, the 397 journal writing prompts and ideas eBook says “Kindness”. In the A to Z of me I chose “Kids”, but I wrote about my childless life already. Now that I write this, something pops up in my mind. In 2016, when I did the A to Z of mental health, I posted among other things about “Keys”. Today, I am picking up this word and reflecting on my sixteen months on a locked psychiatric unit.

It was never intended by the psychiatrist who admitted me to hospital in 2007 that I go to the locked ward at all. However, the open ward was full at the time of my urgent admission, so I was placed on the locked ward. This was in my parents’ city and I only was there for a week-end. When I was transferred to my own city, I wasn’t even told what unit I’d be placed on, but I ended up on one of the two locked units. It was the “least restrictive” locked unit, which didn’t have real isolation rooms. It did have time-out rooms in which you could be locked up, which aren’t much better.

Two weeks into my stay, my doctor informed me that I could in his opinion transition to the open unit. He however soon made up his mind, as I had terrible meltdowns. This was in fact what kept me on the locked unit for sixteen months, because the open resocialization unit initially didn’t want me.

For the first three months of my hospital stay, I had almost no privileges, which meant that I could only leave the unit accompanied by an adult. These three months were a long time, considering that most people don’t even spend that long in a psychiatric hospital. In the grand scheme of things though, it sounds like a very short time. Within a month from getting some unaccompanied off-ward privileges, I had full privileges and they were never restricted again.

I didn’t really mind being on a locked unit, but it’s still pretty strange. I mean, now that I live independently, I still struggle to leave the house without someone else even to sit in the garden. This is in part due to my terrible orientation and mobility skills, but it may also be a form of continued institutionalization syndrome.

Joyous: The Last Time I Felt Genuinely Joyful #AtoZChallenge

Welcome to day 10 in the A to Z of random reflections. Today, I picked yet another prompt from the 397 jorurnal writing prompts and ideas. It is “joyous” and asks about the last time you felt joy.

Now I for one aim to find joy in little everyday things. However, for a long time, I have been distinctly remembering th elast time I felt genuinely happy. This was in November. Let me share.

We had a “day out” at day activities. We weren’t actually going anywhere, but the money the staff used to organize this special day for us was originally intended to take us on a trip. Since many of my fellow clients are severely intellectually disabled, they wouldn’t benefit more from an actual day out than they would from a special celebratory day at the center, or so the staff reasoned.

In the morning, two female clowns were visiting the center. They visited each group separately, so we didn’t have to all come together. It was a lot of fun. First, one clown called out a fellow client’s name. I chimed in, calling her name in my typical echolalia voice. This got the clown to think I had this client’s name as well, so she came to me. I was allowed to feel her clown shoes and hat and we also danced a little.

After the clowns left, a local snack bar sent a vendor with French fries and all sorts of snacks. I attend a group for severely intellectually disabled people, so for my fellow clients and initially for me too, the staff was deciding which snack we would eat. I asked to visit the industrial group (for more capable people). As it turned out, we were allowed to get as many snacks as we wanted, so I had some fellow clients from the industrial group help me to the vendor. I didn’t binge, but I definitely ate more than would’ve been healthfully responsible. Then again, we only get this type of event once in at least a year.

What was the last time you felt genuinely happy?