When I Was Fifteen

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

Sky Is the Limit #SoCS

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “Sky’s the limit”. I was immediately reminded of a story in Stephanie Kaars’ book Speciale mama’s (Special Mommies), in which this phrase inspired a mother to challenge her son, Sky, who had severe cerebral palsy, beyond his apparent limits.

It then made me think of how challenging someone beyond their apparent limits, doesn’t mean expecting them to be “normal”. I mean, the phrase which inspired the mother says that her son is the limit. In other words, each child or adult is their own limit of what they can achieve and this should not be defined by the person’s characteristics, such as disabilities.

I don’t have as severe a disability as Sky. I mean, yes, of course blindness is seen as a “major” disability for statistical purposes, but it alone doesn’t qualify anyone for long-term care. Severe cerebral palsy does. That being said, I do have a significant combination of disabilities: blindness, autism and mild CP.

I don’t think these disabilities, or rather the stereotyped perception others have about them, limits me. I mean, of course my disabilities impair me, but that’s totally okay. I am not limited by others’ ideas of what a blind person (as that’s my most visible disability) can or cannot do. Because, you know, even though I am in long-term care with the highest care profile in the visually impaired category, people still sometimes say I’m quite capable for a blind person. No, I’m not.

I am also reminded of the current slogan for the National Federation of the Blind: “I can live the life I want; blindness doesn’t hold me back.” The old slogan was: “With proper training and opportunity, an average blind person can do a job as well as an average sighted person.” This may or may not be true for the hypothetical average blind person, but it certainly isn’t true for me.

Is the new slogan? Yes, I think so. I could really go to university if I pushed harder, maybe. Maybe not, I’m not sure. However, I have no desire to go to university anymore. Similarly, I wasn’t dying living semi-independently. Well, I almost was, if you count the two medication overdoses I took, but those weren’t due to blindness. Then again, I am happy to live in my current care facility. I may still have things I want to improve on, but I for the most part do live the life I want.

In Crisis Yet Again #Blogtober20

Okay, this may not be the most appropriate post for #Blogtober20. After all, the prompt for today is “relax”. It is also World Mental Health Day. Most people would use this to advocate for better mental health services, or to share tips on coping with mental health issues. Tonight, I’m too stressed out to do either. In fact, this is just going to be a raw post on my having been in crisis tonight – and not having fully recovered yet as I write this, in fact.

I was on edge all day. By mid-morning, I started feeling irritable, but it was still manageable. When it was time for lunch, a different staff from the one assigned to my side of the home came to eat with us. We also didn’t get the usual weekend lunch stuff, such as sausages, pancakes or soup. We did get a baguette with cream cheese on it. It was okay. IN fact, I much prefer that to our weekday lunches. I don’t think it’s even the fact that I didn’t get the treat I wanted, that set me off, but the fact that so much was different about the lunch. Thankfully, after being on the verge of a meltdown for a bit, I was able to calm down.

Then in the evening, I spiraled into crisis. I don’t even know why honestly. I was getting very irritable about the staff having the TV on even though the volume was turned to low. Within the next fifteen minutes or so, I landed in a full-blown meltdown that seemed to last forever. I eventually asked the staff to fetch me a PRN lorazepam, but then somehow got it into my mind to climb over the balcony railing. I didn’t, but the mere fact that I was standing on my balcony on bare feet in the rain and disclosed my thoughts, worried the staff.

I was near a staff all the time until I had to go to bed at 10:15PM because the evening staff were leaving. They did remove the knob on my balcony door, so that for now I cannot go on there. I gave them permission for this, for clarity’s sake.

The lorazepam has started to kick in, but I’m still pretty tense. I must say that I am completely in awe of how my staff handle my challenging behavior too. It must be hard having a mentally disturbed person on an intellectual disability unit. In psychiatric care, they’d probably have sent me for a time-out off the ward. After all, psychiatric professionals commonly see me as a borderline case. I’m not sure my current place is the most suitable for me, but the staff definitely are.

#Blogtober20

The Kindness of Strangers

Okay, it’s past 2:30AM and I just said I wasn’t going to blog right now, but CrunchityFrog’s prompt for today (well, yesterday) has me thinking. This is supposed to be a daily prompt thing, so I might join in more often. Anyway, the prompt is to write about the kindness of strangers.

I’ve probably written many times already about overbearing, intrusive strangers. Particularly when I was a teen, I didn’t realize that my autistic behavior (of which I was unaware that it was autistic) combined with my blindness often caused people concern. I am more appreciative of people’s attempts, even awkward ones, to help now. That probably changed on the evening of November 2, 2007.

Okay, I’ve shared the story of my mental crisis probably more often than anyone cares to know. Today I’d like to focus on the kindness of the people who helped me stay alive and safe.

As regular readers of my blog will know, I was in a suicidal crisis that evening. I had left the training home I was a former resident of and had hoped to find safety in, because I was told the staff had no responsibility for me and I was to leave.

I took the bus to the city’s train station, talking into my former care coordinator’s voicemail. I told her I was going to take my life that night. I was completely unaware that people could hear me until a woman across the aisle from me started to talk to me. She told me that the bus driver had heard me, which initially only caused greater panic. She kept saying over and over again that he was getting help for me. (“Help”, of course, came in the form of the police, as is customary here in the Netherlands if someone’s safety is in question.) I was in utter shock, constantly crying and very overwhelmed. I am forever grateful for this woman’s kindness. And of course for the bus driver’s. It most likely, after all, wasn’t within his duty to report his concerns to the police.

Looking back, I realize I rightfully worried random people on the streets many times before and they were kind enough to help. Even if “help” meant to call the police. My parents often felt that people were just stupid, assuming that a blind person shouldn’t be traveling independently. Some were, indeed, but in some cases my parents were stupid, assuming that I was just blind.

If I Could Turn Back Time… #Blogtober20

Today’s prompt for #Blogtober20 is “If I Could Turn Back Time”. I think we all would do some things in our past differently if we could. I certainly would.

I mean, when I was in the psych hospital from 2007-2017, I regretted almost every step I took or didn’t take. My last psychologist was right in a way that so many places to live had passed that I’d turned down. I had turned down a shelted living place for the mentally ill, a workhome for autistics, a training home for autistics, etc. They were not suitable places for me and I completely understand I decided not to take the step. However, I particularly completely regret the step I did take to move to that last psych ward in 2013. Most of the places I’d turned down, seemed more suitable in hindsight than that last unit.

Still, now that I’m in a suitable place, I can see why the things happened the way they did and I made the choices I made. None of the places offered to me back in those early years in the psych hospital were as suitable as my current care facility is.

For the most part, this boils down to them being psychiatric living and/or treatment facilities rather than those serving people with developmental disability. You see, here in the Netherlands, autism is seen as a psychiatric condition if you have an IQ above 85. And in case it isn’t clear, the care approaches of psychiatry and developmental disability differ significantly. In particular, all psychiatric facilities are aimed at people developing their independence, or as they call it “rehabilitation”. I find this particularly unsuitable an approach to me.

Looking back, I maybe should have accepted the very first placement offered to me: a treatment unit and independence training home for autistics. Maybe the staff would’ve recognized my needs there. Or maybe not. Maybe I should’ve gone to the workhome. At the workhome for autistics, the staff did understand I needed more support than they could offer. They tried to help me and my staff find another place for me but came up with a facility for people with intellectual disability. The staff at the psych unit at the time were very understanding of my needs, but they still felt an intellectual disability place wouldn’t be suitable. You all know that I beg to differ.

To make a long story short, I’ve had quite a few regrets, but in the end, my life is good the way it is now. And that’s what counts!

#Blogtober20

This Is Me: Beyond the Labels #Blogtober20

A few days ago, I discovered Blogtober, a month-long event aimed at bloggers writing a post everyday during the month. There are prompts for each day of the month. They’re based on song titles, but you can do whatever you want. You don’t even have to follow the prompts! The first prompt is “This Is Me”.

So, who am I? When introducing myself, I tend to focus heavily on my labels. I tend to say that I’m blind and autistic and that I have mild cerebral palsy. I tend to say that I live in a care facility. I tend to say that I don’t work, but do day activities at my facility. Then again, are these the things that define me?

I could also be focusing on my passions. I am a blogger. I love to read memoirs and young adult fiction. I love to make soap and other bath and body care products. I am interested in aromatherapy. I am passionate about mental health and disability rights.

These are more “me” than my disabilities, but they’re still labels. Who I am at the core is not a blind or autistic person, or a blogger even.

Still, it is hard to define myself beyond the labels. Here are, however, a few things I think make me me.


  • I am open to new experiences. For example, I love to discover new hobbies. I am also open-minded to differences in people’s identity.

  • I am passionate. When I have an idea in mind, I can truly focus on it for a while. This means I can really be enthusiastic, but it also means I tend to perseverate.

  • I am sensitive, both to emotions and to physical stimuli. This may or may not be a positive characteristic, depending on how much I can handle on a given day.

  • I am intelligent. This is often the first positive quality people mention about me and I tend to hate that. After all, my IQ was often used to show that I should be able to solve my problems in other areas. Now that I am in an environment that doesn’t judge people by their IQ – I live with people with severe to profound intellectual disability -, I tend to appreciate my intelligence somewhat more.

  • I am a go-getter. Some people would disagree, because I have very poor distress tolerance and because I haven’t achieved their goals for me. They see the fact that I’m in a care facility and not working as a sign that I’ve given up. I haven’t. I have just focused on my own true needs and desires.

What are some things that make you uniquely you?

#Blogtober20

#WeekendCoffeeShare (August 30, 2020)

Hello all. I’m not feeling like writing much right now, but maybe by just starting I’ll get somewhere. I just had a cup of coffee and a soft drink. I think the flavor soft drink I had is gone now, but we might still have coffee. As usual, I’m joining in with #WeekendCoffeeShare. Let’s have some drink – there are probably other soft drinks out in the fridge – and let’s catch up.

If we were having coffee, I would ask you how your weather’s been. Ours is okay. Not too hot, not too cold, not too rainy and not too dry. I’ve been out taking regular walks most days. I don’t think I shared this in this type of post before, but come September, I’ll be starting a sponsored physical activity challenge called Steptember. It’s for the cerebral palsy charity. The idea is to get in 10K steps everyday – or as many days as you can get. I find it quite a challenge – both the sponsoring part and the step goal. However, I’m trying.

As regular readers might know, my Fitbit activity tracker broke down some months ago. I’m now using my iPhone’s built-in movement detector to count my steps. That works okay. I did reach the 10K steps on both Thursday and Friday.

If we were having coffee, I would tell you that I spent most of the week escaping into books. I’m okay, but I do need some escapism right now.

If we were having coffee, I would tell you about the appt with my community psychiatric nurse on Tuesday. It went pretty well. We did go in some depth considering her role as just a nurse. She also told me my nurse practitioner was going to refer me to the specialist center on developmental disorders (autism and ADHD). If the information on the website is correct – which I’m not sure of, as the date of the last update was August 27, 2019 and I’m not sure that’s a typeo -, the wait is several months for an intake interview and then another six months for treatment. I’m not sure that’s just for the inpatient units though, as I know that the workhome is part of the center too. That one has a wait of several years due to it being a living facility.

In any case, before I knew there’s likely a long waiting list, I had all kinds of worries and thoughts about it. I mean, I’m hoping to eventually get trauma treatment and lowering my antipsychotic is still on the agenda too. However, I’m very scared either of these could destabilize me. Then again, I just don’t feel my life right now is all it can be.

If we were having coffee, lastly I would share that I spent the week-end in Lobith. It was good. My husband made us hamburgers with cauliflower and baked potatoes, all out of the freezer. I really didn’t taste that about the cauliflower and the burgers and potatoes were delicious too.

As usual, we spent some time together on the couch and some time apart in the two bedrooms. I have a desk in the master bedroom and my husband has his desk in the other bedroom. That one is also used as our cat’s place though.

Then this afternoon, my mother-in-law came to pick me up and drive me back to Raalte. There, I arrived just about in time for my dinner to still be shoved in the oven.

How have you all been?

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 Time I Decided to Speak Up for Myself

The weather has cooled off some, but I’m still somehow lacking motivation to do much. For this reason, I scrolled aimlessly through some journaling prompt books I have in my Kindle app. In one of them, one of the prompts that caught my eye was to recall a time when you spoke up for yourself.

I am usually not one to speak up for myself easily. Especially not when the person I’m needing to advocate to is an authority figure. The memory I’m going to describe involves my last psychologist at the psychiatric hospital.

She was somehow convinced that I have dependent personality disorder. There are good reasons to think so, but her reasons were not among those. To put it bluntly, she thought I misused care.

More importantly than her diagnosis of DPD though was her removing my autism diagnosis that I’d had for nine years. She believed that I could not possibly be autistic because I had a brain bleed as an infant and that instead my diagnosis should be some form of brain injury. She ended up putting hydrocephalus (which I’d developed as a result of the brain bleed) on axis III of the DSM-IV classification and that apparently should suffice in explaining my difficulties. That plus, of course, DPD. Well, it didn’t.

Like I said, I have trouble sticking up for myself. This is indeed a DPD criterion. Honestly I don’t even care whether I might have DPD actually. I can see how I have some traits. But DPD is different from care misuse. And that’s what my psychologist was accusing me of.

So I finally decided to stand up for my rights and demand an independent second opinion. This was extremely hard and my psychologist had been successfully trying to talk me out of it before. Not this time though. In February of 2017, I had an appointment with a clinical neuropsychologist at Radboud university medical center in Nijmegen. Three months later, on my would-be discharge date from the mental hospital, I got my autism diagnosis back.

Autism, of course, doesn’t explain everything I experience. I might have DPD too. And God knows what else. But I don’t misuse care.

My psychologist, interestingly, claimed that I spoke up for myself really well. That’s a rather contradictory statement to the DPD diagnosis. After all, dependents are often seen as passive. I still wonder why she didn’t have the balls to “diagnose” me as a malingerer.

My Daily Routine (Or Lack Thereof)

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

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

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

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

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

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

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

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

What about you? Do you thrive on routine?