Disability: Describing My Impairments #AtoZChallenge

Posted on by Astrid

Hi everyone. I know for sure I did a post describing my limitations on my now defunct blog, but don’t think I ever did one on here. Besides, even if I did, I learn something new about myself, including my disabilities, all the time. For my letter D post in the #AtoZChallenge, I thought I’d describe my disabling conditions in lay terms. Oh wait, the lay terminology is going to be really tough.

First, I am blind. I have what is called light perception, which means that I am able to see whether it is dark or light around me, but not what direction the source of light is coming from (that ability would be called light projection). Functionally speaking, even though I can still tell day and night-time apart and this is what sets the totally blind apart from those with any vision in medical terminology here in the Netherlands, I consider myself totally blind.

Next, I (most likely) have mild cerebral palsy (CP). I say “most likely” because my parents didn’t tell me whether I had any diagnosable condition that would explain my mobility impairment and I stopped seeing a physiatrist (physical disability doctor) when I was around nine. In any case, I walk with a drop foot on my left side that gets worse when I get tired. Though I can, with difficulty, walk a distance of about 5km at a time when I’m very energized that day, I do fall more easily than non-disabled people. I didn’t realize this until, several years ago, I read on a CP-related blog about fall risk assessments containing a question about whether you’ve fallen for any reason in the past year. Well, the blogger said hardly a week goes by that they don’t fall. That isn’t exactly true for me, since I hold onto someone’s arm or hand when walking, but I do fall at least once a month.

CP (or whatever it is) also means my fine motor skills aren’t great. I used to get physical therapy for this. I did exercises like touching my thumbs to each of the other fingers. I can now do that easily with my right hand and with some difficulty with my left. I cannot use a knife and f ork to eat with and, even with my specially adapted spoon, often make a bit of a mess. I can type and do so with both hands, but I much prefer to use my right hand and, even though I was taught the ten-finger touch typing, I don’t do it fully correctly. As long as it works, though…

Since CP is caused by brain damage, in my case a brain bleed sustained shortly after birth, it can also come with other difficulties, such as processing issues and lower energy levels. This can also be part of autism, which I was diagnosed with at age 20, of course.

Autism, of course, has its core symptoms of differences in social communication and repetitive behaviors and interests. Because I can hold down a reasonably normal-sounding one-on-one conversation about myself, as clinical assessments often are, I am diagnosed as “mild” or level 1. I am not “mild” by any means, truthfully.

I am tired. I was writing an entire rant on why I am nnot “mildly” autistic, but I was using all kinds of technical terms and I promised you a lay explanation. I don’t think this post makes much sense, but oh well.

Aphantasia and Alexithymia #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to the #AtoZChallenge for 2024, letter A. I don’t have a theme, but I thought I’d do a repeat of what I did several years ago (I think it was in 2019), sharing posts on topics relevant to myself. I might still go off on a tangent every now and again. Awareness posts are one of my strengths and I’ve covered autism more than enough, so today I thought I’d cover two subjects I’m still relatively new to myself: aphantasia and alexithymia.

Aphantasia is also known as “mental blindness”, although it can be related to any of the senses. It’s an inability to form a mental image of something (or to imagine a sound, smell, whatever). As it turns out, most people can see relatively vivid images in their mind’s eye when they think of an object or person even when said object or person isn’t with them right then. They can also picture a scene, such as a beach scene, in their mind’s eye. I, however, can only picture objects and people very vaguely if at all, even when they’re things I used to be able to see in real life when I still had some sight.

Moreover, like I said, aphantasia can affect the other senses too. This was what made me realize I probably do in fact have aphantasia and am not just a blind person who has forgotten what it’s like to be able to see. After all, when doing a meditation practice that, for instance, tells me to imagine a beach scene, including hearing the waves crashing against the beach, seagulls making their sounds in the distance, feeling the sand between my toes, etc., I can’t. And it’s not for lack of trying. I mean, I remember once, many years ago, one of the child alters creating an inner beach by writing its description out here on the blog. I’m pretty sure that wasn’t actually effective.

Aphantasia is related to a phenomenon I did hear about several years ago, called alexithymia. This is the inability to recognize, identify and describe one’s own emotions. I remember getting a questionnaire on this at my last autism assessment in 2017, but was in denial about how significantly alexithymic I am in fact, because I, unlike the stereotype of alexithymia, don’t consider deep, emotional discussions a waste of time. In other words, I am not unwilling to describe my own feelings, but merely unable.

Neither alexithymia nor aphantasia are classified as disorders in their own right. They often co-occur with autism, which of course isn’t necessarily a disorder either but is classified as such and is, in my case, certainly disabling. Then again, so is my inability to identify my own emotions.

The Downside of Praise

Posted on by Astrid

As a child, I was often praised excessively for my achievements. I remember one day, when I did calendar calculation at a family get-together, calculating what day of the week May 3, 1327 (for example), was, my mother exclaimed: “She’s sublime, she’s a genius!” For those who don’t know, many autistic or otherwise developmentally disabled people, including those with lower measured IQs, have this skill as what is stereotypically called a “splinter skill”. Now don’t get me started on the ableism of the term “splinter skill” when applied to people with lower measured IQs, but calendar calculation alone definitely doesn’t make someone, anyone, a genius.

And just so you know, it’s incredibly counterproductive to praise a person for who they are rather than what they do. It is usually better to praise someone for their achievements by naming those achievements as well done rather than praising the person themself. Moreover, any excessive praise, even if you say “you did an awesome job calendar calculating”, can be taken the wrong way.

Besides, many people feel they are praised for something that doesn’t reflect their personal values. For example, when I am praised for completing a personal care task, all I see is pressure to be able to do it independently the next time too. When, however, I am praised for creating something nice out of polymer clay, for my writing or the like, I feel like I’m valued for my contribution to the world.

There is, or so I’ve read, some school of thought that says any praise, whether person-centered or accomplishment-based, should be avoided by parents or carers. This doesn’t mean parents or carers should completely ignore their child’s achievements. Rather, simply pointing them out and engaging with the child about their achievements, will, according to these people, help the child develop a healthy sense of self. Honestly, I am inclined to agree with this.

What, When, Where, With Whom and What After That?

Posted on by Astrid

I have been struggling with staff randomly switching up who will support me, my day schedule being changed for various reasons, etc., a lot lately. This causes me a lot of stress. Like regular readers of this blog may know, I have about eight hours of one-on-one support a day, divided into blocks between 8:15AM and 9:30PM. Between my support moments, I have unsupported time slots that range in length between 30 and 45 minutes.

I often struggle with my unsupported time, looking at my watch every few minutes to see whether my support staff will be coming yet. I also look at my watch a lot during my supported times, because I dread the moment my staff unexpectedly say they’re leaving.

Last night, I thought up a way to possibly solve this issue: to organize my day schedule more by activity. We need to watch out this doesn’t become the stupidly vague day schedule my former support coordinator at the intensive support home gave me. After all, when the day schedule says that we’re going for a walk and doesn’t specify how long that walk will be and there are absolutely no timeframes related to the activity, some staff will take me for a three-minute walk around the home while others will take me for an hour-long walk. Then, if after the walk I’m supposed to have unsupported time until lunchtime, the length of my unsupported time could range anywhere from like 30 minutes to nearly an hour and a half. This was actually what my day schedule back at th e intensive support home was like.

What I’d like instead, is to know what, when, where, with whom and what after that. To put it more concretely, I’d like to discuss during my morning routine who will be supporting me for the rest of the morning shift (and after handover for the evening shift), what we’ll do, including what I’ll do during my unsupported times, and to put those activities on a tactile “picture” board (with Braille instead of pictures). I think knowing what I’ll do during my unsupported times will lessen the number of times I look at my watch too. It also will mean I know who’ll support me for my activities, so that I know whether I feel comfortable with them doing certain activities with me or not.

I’m pretty sure this is all wishful thinking. One of the staff, who happens to be one of my “favorites”, didn’t think it was a bad idea. Then again, my assigned staff said I was lucky that I heard 25 minutes in advance that he was going to be there for my early afternoon activity, because his shift doesn’t start till fifteen minutes before that activity starts and if it was up to him his morning shift colleague would’ve conferred with him prior to telling me that he was coming. That would mean I’d get at best ten minutes notice. According to my assigned staff, no-one specified how much preparation time I need, so technically speaking five minutes should be enough. I think that’s rather, well, literal-minded at best and purposefully twisting the truth at worst.

This post was a rather long contribution to this week’s Stream of Consciousness Saturday, for which the prompt today is “watch”. I usually don’t write pieces that are this lengthy and in fact struggled to maintain stream-of-consciousness style.

Never a Perfect Day: Is It a Bad Attitude?

Posted on by Astrid

Yesterday, as I was paging through some collections of journaling prompts I own, I came across a prompt that said: “Today was a perfect day because…”. Now I would counter that not a single day in my life was perfect. That in turn reminded me of something my assigned staff at the intensive support home used to complain about. She’d say I never said I’d had a great day and rarely said I had a good day. Most days though, I said my day was “okay”. I’d regularly say a shift had gone “pretty well”. To that, she often asked me to clarify what didn’t go well, since I didn’t say it went well, but said “pretty well” instead. According to her, even if I’d had a perfect day care-wise – my day schedule was followed precisely and I’d gotten all familiar staff -, I’d still find something to complain about.

There are several things I could add to this. For one thing, I wasn’t the one complaining. I think “pretty well” or even “okay” isn’t negative. For another, I never had an entire day where my day schedule was followed precisely and I was only supported by familiar staff. I do have those days now.

Another thing is, I am in near-constant physical discomfort. This may be relatively mild, but it is present nonetheless. I am also perpetually in a state of overload. For this reason, merely going through the day takes me more effort than it would a non-disabled person. I realize neurotypical, non-disabled people cannot grasp what it is like to feel what I feel, but to label my lack of overt positivity as somehow being a bad attitude, is quite something different.

Memories of My Paternal Grandfather

Posted on by Astrid

Hi everyone. Today is National Grandparents’ Day in the United States. I heard of this a few days ago when looking for inspiration for my blog, but didn’t feel like writing about the topic at the time. Now, the subject returns in Marsha’s 10 on the 10th post. This is a meme in which Marsha asks ten questions related to a particular topic of the month. Rather than answer all ten, I’m going with one of them, which is to share a favorite memory involving your grandparent(s).

I have shared about my paternal grandmother a lot of times already. She was certainly my favorite grandparent. Today though, I’m going to share about my paternal grandfather.

My paternal grandparents divorced in 1973, years before I was born. They didn’t have much contact since, as all of their children were adults by that time. In fact, I can’t remember a birthday or holiday when they visited my family on the same day.

My paternal grandfather was a radio technician during his working life. He knew a lot about all sorts of science and tech things. Indeed, my parents tell me I acquired my first spoken word from him. As the story goes, my father and grandfather were discussing aviation and, at one point, either of them mentioned the word “aircraft industry”. I, then ten-months-old (seven months corrected for prematurity), parroted: “Aircraft industry.” This, my parents see as a sign of my being a genius. Most of my psychologists in my adult life have seen it as one of the early signs of autism.

My paternal grandfather was probably on the spectrum himself too (as is my father, though he doesn’t care about diagnoses). We had these traditions built into his visits with us. One of them was him always giving my sister and me ƒ5 each. At one point, when my father had probably decided we were too old for this, our grandfather put the coins in a very hard to open money-box with transparant sides, so that we could see our money but not reach it. I am pretty sure I had a tantrum over it.

My grandpa had a small motorized boat. Well, large enough to sleep in. My sister once went on a week-long sleepover on the boat with him. Mid-way through it, my parents and I visited them and we sailed IJsselmeer a bit. I was both scared and excited, as we could leave the boat when it was anchored and have a swim around.

I went to grammar school, the type of high-level high school I attended, in 1999. My grandfather had attended grammar school back in the 1930s, so he gave me some kind of a button with “grammar school 1” written on it.

By that time, age 75, my grandfather started thinking he was suffering from dementia. My father brushed it off, saying he probably thinks he has dementia when he doesn’t remember the most difficult of the Latin words he learned in grammar school. As it turned out, my grandpa was right after all, as he was diagnosed with pretty advanced dementia in late 2001, age 77. At this point, he needed to be placed in a nursing home. He died not even eighteen months later. Now that I know more about dementia, I know that the stage of not recognizing people and having no short-term memory whatsoever, is by far not the first stage of dementia. I realize now too that my paternal grandmother probably suffered from mid-stage dementia too, but died of another cause before entering the phase at which point my grandfather was diagnosed. It is truly tragic that my grandfather wasn’t taken seriously.

How Sensory Seeking Manifests in Me

Posted on by Astrid

As those who visit my blog regularly will know, I am autistic. My assigned staff put “highly sensitive” rather than autistic on my basic info sheet. This isn’t necessarily incorrect, but it is definitely incomplete. Not just because autism encompasses more than sensory processing challenges and because the hyped-up term of “highly sensitive” doesn’t come close to describing my level of overload, but also because in certain ways, I am not hypersensitive at all. Today, I want to talk about the ways in which I am, in fact, a sensory seeker.

The main aspect in which I’m a sensory seeker, is reflected in the way I approach food. I love love LOVE spicy food. I also love crunchy food. I can’t stand mash, because that is about the polar opposite of both. Honestly though, I find the texture matters more than the flavor, since mash didn’t get better with lots of black pepper on it and I can handle bland yet crunchy foods.

I also chew on hard candy. Like, I’ve tried sucking on it, but I really can’t manage to do that for more than a few seconds before I need to break the candy. Another example, but I’m not sure whether this is sensory seeking or lack of proprioception and/or coordination, is the fact that my staff tell me my spoon always clanks against my teeth quite loudly. I also realize now that drinking my coffee quite hot is probably a sign of being a sensory seeker.

With the sense of smell, I have a love/hate relationship. I love my essential oil diffuser, but don’t usually wear perfumes and can’t really stand anyone else wearing them.

In the tactile sense, I’m definitely a sensory seeker. This doesn’t mean I like all kinds of touch. I mean, I can’t stand it when people unexpectedly pat me on the back. Truthfully though, it should really go without saying that you should never touch another person without asking them first.

However, I love tight hugs, or used to before I broke my collarbone in 2019, which never properly healed. I also love to be rough when brushing my hair and am probably a bit rough when brushing my teeth too. When I wear my hair in a ponytail, it has to be tight too. And my shoelaces can’t really be tied too tightly. And yes, my spouse took up the challenge, only to tell me that, even though I didn’t think they were too tight, they actually were.

I of course need to mention my weighted blanket here too. It is 12kg, which is between 20 and 25% of my body weight. That’s on the heavy side as far as I’m aware. Of course, I got it when I still weighed nearly 20kg more than I weigh now, but then I’d often end up adding another weighted blanket on top of it.

Another aspect of sensory seeking I need to mention is being in constant motion, even if it’s small movements with my fingers or toes. I am not diagnosed with ADHD, though sometimes I think I could have it. I wasn’t extremely hyper as a child – in fact, my parents would describe me as a quiet child. However, I was definitely jumping onto lots of things. I no longer do this, but mostly because I can’t due to my decreased mobility. Now that I think of it, honestly I’m pretty sure that my need to walk a lot, is also a sign of sensory seeking and/or hyperactivity.

With respect to the sense of sound, I’m not generally a seeker. I do listen to soothing music on my music pillow when trying to get to sleep, but that’s it. I can’t stand background noise. Like, some staff suggest we have music on in the background while we play games, but I really can’t concentrate then.

Lastly, of course, is the sense of sight. I’m blind now, obviously, but when I was younger, I still had some sight. I definitely was a sensory seeker when it came to the visual modality. The most striking example is the fact that I’d often make shadows on my desk with my hands and look at them.

There are many other ways in which I express sensory seeking, but you get the idea. All this being the case, don’t discount my sensory overload just because I can be a seeker in other circumstances.

My Random Musings

Also linking up with Senior Salon Pit Stop.

The Wednesday HodgePodge (June 28, 2023)

Posted on by Astrid

Hi everyone. I haven’t touched the blog in a few days once again. It’s for partly different reasons than last week this time though. The different reasons include the hustle and bustle of my birthday. It’s over though so today I’m back joining the Wednesday HodgePodge. Here goes.

1. What’s one thing you’re excited about in the coming month?
The last bit of my birthday celebrations when my mother-in-law visits me next week. We couldn’t visit my in-laws on Sunday. That is, technically we could, but since my mother-in-law was on call for the animal rescue service she volunteers for, it would have been quite boring for me.

2. What was your life like when you were ten years old?
It was a very difficult year. I turned ten on June 27, 1996. The day before my tenth birthday, I had my first out of what turned out to be only four sessions with a play therapist/educational psychologist. Given what I remember of those sessions, I wonder whether the therapist saw signs of autism back then. Either way, I’m pretty sure my parents decided after those four sessions that it was useless to continue. Fast forward to the end of my year of being ten, June of 1997, I had a psychological evaluation supervised by the same ed psych. This, and the recommendations that came out of it, led to my parents finally falling out with the school. Oh, how I wish I hadn’t been loyal to my parents back then…

3. What’s something from your childhood you still enjoy today?
Being creative, although not in the same ways. That is, I did love playing with play-doh (which one might say is somewhat related to polymer clay, even though real polymer clay artists will punch me in the stomach for saying it) as a young child. I loved drawing more though, something I obviously am no longer capable of. One thing I want to say though is that, even though I’m now totally blind, I still appreciate colors.

4. What state (that you haven’t been to) do you most want to visit? Tell us why.
I haven’t been to any U.S. states and honestly have no interest in visiting them anymore either. As for a country I’d like to visit that I haven’t been to: Sweden.

5. Do you like to drive? Tell us how you learned to drive.
Uhm, N/A. I don’t drive, as I’m blind. That being said, I doubt I could’ve learned had I not been blind, because my processing is about as screwed as can be.

6. Insert your own random thought here.
Today, I created a polymer clay flower pendant in just half an hour. I loved the entire process and it turned out quite good. In fact, the only thing I dislike about it is the fact that the eyepin’s direction is off.

I really need to be showing more of my creations on here, I think, as social media hardly work for me. I mean, I do try to use Instagram, although I wish it were more of a microblogging service with the pictures being optional. Then again, that’s what Twitter is supposed to be, but then again I despise Elon Musk. Oh well, the perfect social media platform doesn’t exist.

Don’t Leave Me Alone! #SoCS

Posted on by Astrid

I am one of those autistic people who doesn’t like to be left alone. That is, I do need a significant amount of alone time, but it has to be on my terms. That might seem weird or normal, I don’t even know. I mean, I’m used to it being seen as weird here at the care home. Staff see it as a sign that I crave attention somehow. Which, even if it were true, well, attention is a normal human need.

I am not sure where I’m headed with this post, but I often feel like a fake autistic for feeling like I don’t want or need to be left alone when I’m in distress. Probably because my former psychologist at the psychiatric hospital used it as a reason to diagnose me with dependent personality disorder. Which I might have after all, I’m not sure. Then again, the treatment for that isn’t to leave someone to their own resources just like that.

I often have this statement in my head: “Don’t leave me alone!” It is cried out, in my head, by a child’s voice. I am pretty sure it is from a book and in Dutch, it sounds different, but I’m writing it like this here for the purposes of this post. Don’t leave me alone. Never leave me alone. Well, people always will. That’s life.

This post was written for Stream of Consciousness Saturday for this week. The prompt is “left alone”.

ZZZ: Sleep Issues in People With Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone. Almost every year, my final post in the #AtoZChallenge is about sleep or “ZZZ”. This year is no different.

Sleep problems can affect anyone, disabled or not. However, sleep disorders, including sleep apnea (sleep-related breathing disorder) and insomnia, are more common among people with intellectual disabilities than among the general population. In fact, one review found that as many as 31% of adults with intellectual disability experienced more than one sleep problem. More severely intellectually disabled individuals, those with certain genetic syndromes and those with comorbid neurodevelopmental disorders such as autism, are at particularly increased risk of having more sleep disturbances.

Sleep problems can cause physical and mental health problems in intellectually disabled people just like in the general population. However, they can also contribute to challenging behavior.

There are many factors associated with sleep problems in intellectually disabled people. For example, those with comorbid autism and/or ADHD are at increased risk of having sleep disturbances. Those with certain genetic syndromes, too, may experience certain sleep disorders. I mentioned sleep apnea already in my post on Down Syndrome. People with Smith-Magenis Syndrome, on the other hand, often experience an inverted circadian rhythm.

Environmental factors also need to be considered. For instance, a care home may not be ideal for people with intellectual disabilities to sleep properly due to for example night staff checking on them frequently. This does not happen here. What happens here rather frequently is the reverse, staff leaving clients to “rest” in a sensory room or their bedroom during the day.

The management of sleep disorders in people with intellectual disabilities is somewhat similar to that in the general population. However, more care should be taken to rule out medical conditions such as epilepsy or sleep apnea as the cause for poor sleep. The only medication which is somewhat effective for sleep issues in intellectually disabled people, is melatonin.

Now it’s 10PM and I’m ready for bed myself, I guess.