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 (March 22, 2023)

Posted on by Astrid

Hi everyone. I’m joining in with the Wednesday HodgePodge once again. Here goes.

1. Did you celebrate St. Patrick’s Day in some way? If so tell us how. Are you a fan of corned beef? Cabbage? The color green?
No, I didn’t celebrate St. Patrick’s Day. I am not a big fan of cabbage or corned beef, but it’s not like I hate them either. I do love the color green.

2. March 22nd is National Goof Off Day…will you celebrate? Your favorite way to goof off? Last time you had a whole day to spend “goofing off”?
I don’t work and can officially choose my own activities within my day schedule, although a lot of staff will suggest them for me. In this sense, I can “goof off” as much as I like, although it doesn’t often feel like it. My favorite ways to “goof off” would be reading, watching YouTube videos and chilling out with an essential oil diffuser on. By the way, crafting is also a favorite way to spend my time, but since I need support with that, I often don’t feel as playful about it as the expression “goofing off” reminds me of.

3. Something on your to-do list that has been there more than a month? Will this be the month you finally cross it off?
I don’t have a to-do list, honestly.

4. In your opinion, what emotion is the most beneficial? Which one is the least useful?
The most beneficial emotion, to me, is joy. Okay, yes, I copied that from Joyce but I completely agree. I had it as my word of the year last year. The least useful emotion, to me, is bitterness.

5. What was your favorite thing to do as a kid? Elaborate.
Many different things. I enjoyed playing with PlayMobil® until I was at least thirteen. I also loved sitting on the swings in my garden. However, I was also quite nerdy, enjoying geography and drawing maps by hand (obviously not detailed at all due to my severe visual impairment and my poor spatial awareness). My favorite map to draw was that of Italy.

6. Insert your own random thought here.
Just a thought: for those of you who don’t need care, can you imagine what it’d feel like if, each day, five or so different support people, often random strangers, showed up in your home claiming to want to do an activity with you? How about if they felt entitled to ask you personal questions to “get to know you” without disclosing much about themselves (after all, they’re “professionals”). What if, after six months, you’d seen literally over a hundred of them, if not several hundreds? How would it make you feel? I just asked a staff, who is a temp worker here but has supported me about ten times now so I’m supposed to “know” him, this question, after I got very irritated with another temp worker (who’s supported me about five times). The more familiar temp worker seriously replied that he wouldn’t mind who got into his home as long as they’d do the activity with him. I guess this means needing care is too far out of his realm of experience to understand the question.

Early Memories of Physical Activity

Posted on by Astrid

A few months ago, I read on another blog about Carrie Underwood’s book Find Your Path: Honor Your Body, Fuel Your Soul, and Get Strong with the Fit52 Life. One of the aspects that immediately appealed to me in the book, are the journal prompts. Yes, duh, you know, I’m a sucker for journal prompts. However, Carrie Underwood’s journaling prompts are not just random one-liners, they’re deep questions. One of them is about early memories of physical activity. Today, I want to share my thoughts on this.

As a young child, I loved playing outside. I used to build sandcastles in the wooden sandpit my father had built, not even caring that the wood hadn’t been treated so it got moldy every once in a while. I remember telling you all the story of how my father used to call my Kindergarten friend, whose last name translates to Peat in English, “Kim Mud”.

When I got older, I loved learning to rollerskate. I remember joining an informal neighborhood rollerskating “club” led by the oldest of two girls who lived next door. She was my age and could rollerskate real good or so we all thought. I wasn’t nearly as good or even as good as my own younger sister, but who cared? I didn’t.

I got a large tricycle when I was about seven or eight because I couldn’t ride a bike due to my cerebral palsy. Not that I could safely ride a bike, given my visual impairment, but apparently the rehabilitation physician had no idea. I occasionally rode my tricycle, but preferred to walk around the neighborhood.

However, by age seven or eight, when I started to lose my vision, my physical activity level also started to decrease. I am pretty sure it’s more than just my vision though, but there’s no way to prove this as my parents stopped taking me to specialists around that age. I am considering asking my GP or the intellectual disability physician at the care facility for a referral back to rehabilitation medicine, because I want to learn to make the most use of the mobility I do have.

I did till my mid-teens love to sit on the swings. I’m not sure that counts, as it is a sedentary activity, but you do move your legs pushing yourself. I would go on the swings for hours on end. Now though, I get dizzy even going on the swings for five minutes at a time.

A thing I also did from toddlerhood until I moved out of my parental home at age nineteen, was this crawling-in-place movement while in bed. By the time I hit adolescence, my parents complained that I ruined the bed and made too much noise, but I continued to move in this way exactly until I moved to the independence training home. I could do this for hours on end too and I now realize it’s probably a form of autistic stimming.

Overall, I wasn’t physically active in most of the traditional ways. I wasn’t in sports as a child and P.E. was one of my least favorite classes. However, I can’t say I sat on my butt all the time. I didn’t even as an adolescent, though I probably was more sedentary then than I should have been.

How about you? Were you physically active as a child?

Total Blindness

Posted on by Astrid

A few weeks ago, the topic of MindloveMisery’s Menagerie’s Tale Weaver was the loss of the sense of hearing. I was secretly hoping for a tale weaver on its visual counterpart to come up and my wish was granted today: today we’re asked to weave a tale about a character who’s blind. It doesn’t necessarily have to be fiction or so I believe.

As most of my readers know, I have always been legally blind. I at best had around 20/800 visual acuity in both eyes, although I claimed to have 20/400 for a long while. By the time I was eight or nine and was pretty much given up on vision-wise by my doctors and parents, I had roughly 20/1000 vision in my left eye at best and my right eye was even worse. For those who have no clue what visual acuity means in daily life, I was able to see someone raise their hand at one meter’s distance but not count their fingers.

Even so, I didn’t consider myself functionally blind until I was thirteen and transferred from special education to a mainstream setting where I was the only person with a visual impairment. There, there was no point in accentuating my tiny bit of vision, since compared to my peers, I was as blind as a bat.

To this day though, I find it hard to accept the fact that, in essence, I’m now totally blind. I only started considering this possibility after my most recent visual screening at the blindness agency, which revealed that I only have a small window of light perception left in the central part of my left eye’s visual field. For those unaware, light perception is the ability to detect the presence of the eye doctor’s flashlight, but notably not the ability to detect what direction it is coming from (that would be light projection). In other words, I am no longer able to tell where a window or other light source is located within my visual field or even whether there is a light source present if I’m not directly looking at it.

Since I always had some residual vision, no matter how little, I have always wondered what total blindness would look like. One day in fifth grade, one of my support staff told us about having been blind for two weeks due to some disease and it not looking like darkness at all. Other blind people have asked rhetorically: “Does your forehead see darkness?” No, of course it doesn’t.

Like I said, I was given up on by the eye doctors when I was eight or nine. For this reason, I didn’t have regular visual check-ups. I had one in 2005 at the blindness rehabilitation center and then again in 2013 in preparation for cataract surgery. In 2005, I had light perception and some level of environmental light awareness in both eyes. By 2013, I had gone completely, totally blind in my right eye. However, I was unaware of this until the optometrist tested my light perception in both eyes.

Since being made aware that I’m totally blind in one eye, I’ve tried to cover my left eye to see what total blindness looks like. I seriously don’t get a clue. In fact, the closest I come is that blindness, indeed, is the absence of any sight at all, including the sight of darkness.

This does make me think that, when (I’m pretty sure it’s “when”, not “if”) I’ll have lost that last tiny bit of light perception in my left eye, I won’t be aware of it at all for a while. It terrifies me.

I Saw…: Coping with Vision Loss in the Age of Social Media

Posted on by Astrid

Today’s optional prompt at Life This Week is I Saw…. We are supposed to share photos of what we saw lately. This got me thinking. I saw… nothing really, as I am blind.

I have been totally blind with some light perception since the age of eighteen or so. At age eight, my parents decided to give up on my eyesight, so all reports say I went blind at that age. I didn’t. Legally, yes, but I’ve always been legally blind. Functionally, maybe. I started learning to read Braille at the age of seven. Then again, as a person who lost his vision gradually later in life told me, going from 20/1000 vision to none is worse in some ways than going from 20/40 to 20/1000.

I have more or less accepted my blindness now. Even so, with just a tiny bit of light perception left, I still use it. Maybe I shouldn’t, but I do.

One of the most annoying aspects of blindness for me, as a blogger, is being unable to take pictures. I know some blind people have learned to take pictures, but my parents always instilled in me that photos are for the sighted and I shouldn’t want to pursue a visual activity like this. For this reason, I don’t feel comfortable trying to learn to take pictures. I mean, I feel pretty arrogant for believing I could even ever learn to take pictures.

I did mention to my staff that I may want a tripod or selfie stick or whatever for my birthday. Then again, I fear I’ll knock it over and ruin my phone if I’m not careful.

Maybe I need to ask other totally blind people how they take pictures and how they make sure they are blog-worthy or whether they don’t care.

I remember one day, when I was at the blindness rehabilitation center, the staff asked each of the clients in my group what would be the most important thing we’d do if we regained our sight. Many said they’d be able to travel more independently. I said I’d go into nature and enjoy the sights. Right now, I’d say I’d take lots of photos for my blog.

Blindness: Dealing With Vision Loss #AtoZChallenge

Posted on by Astrid

Welcome to day two in the #AtoZChallenge. Today, I am going to tell you about my most obvious disability: blindness.

I was born prematurely. When premature babies could first be kept alive in incubators in the 1940s and 1950s, thousands of children became blind due to a condition first known as retrolental fibroplasia (RLF). The first known cause of RLF was excesss oxygen, as these babies were kept alive because of ventilators and no-one knew that too much oxygen could do harm too. Once doctors and nurses started being more careful with oxygen, the number of RLF cases decreased. However, still, babies develop this condition until today. The name of the condition got changed sometime in the 1970s to retinopathy of prematurity (ROP).

I was born in 1986. At the time, the first sight-saving treatments for ROP had become available. However, early detection is still key to timely intervention. At the time of my neonatal intensive care stay, the pediatric ophthalmologist specializing in ROP was unavailable, so my ROP remained undetected until it’d reached an advanced stage. I did have sight-saving surgery when I was about five-months-old, but I still had only about 20/400 vision left in my better (left) eye.

The bad thing about ROP is that, even though it isn’t in itself degenerative once the baby is out of the NICU, it can lead to further complications throughout life. These can then lead to further vision loss. I developed a cataract on my right eye at age seven. I got it removed, but couldn’t get a lens implant at the time. I could’ve gotten one when I was older, but by this time, my vision had already further deteriorated.

At age eight, when I had only “hand motion” vision (which corresponds to about 20/1000) in my better eye, my parents and the doctors decided to give up on further treatment. I didn’t like it, but I had no say in the matter.

From that point on, i was treated like I was totally blind. I wasn’t, but to a sighted person, 20/1000 looks like not worth it.

At age twelve, I suffered a retinal detachment in my right eye. From that point on, I was blind apart from slight light perception in that eye. I also suffered decreased vision in my left eye, though I considered myself having some minimal functional vision until I was around 17.

Now, I measure as having light perception in my left eye only and no vision in my right eye at all. Light perception is the ability to discern whether it’s dark or light in a room. For example, people with just light perception, can tell the difference between daylight and nighttime, but nothing else. I have some environmental light perception too. Not sure what the correct term for this is, but it means I can detect where for example a window is located. Occasionally, when the light is right, I still have object perception for large objects such as cars or people (within a few feet’s distance). I do not have form perception though, so I do not see the outline of objects.

In 2013, I had cataract surgery on my left eye. I had suffered a cataract on that eye ever since 2001, but, in keeping with my parents’ view, wasn’t going to have it removed. I finally took the step to ask for surgery when I was 27. I didn’t have my hopes up too high. I mean, the university hospital ophthalmologist had gotten my old records from age eight and hoped I’d get that amount of vision back. I just hoped for some color perception mostly, The surgery again was a partial technical success, in that they couldn’t give me a lens implant again. They offered me a second surgery to place it, but the doctors were by this time able to see my retina had atrophied and offered me little hope. I decided not to pursue the second surgery.

Dealing with vision loss can be hard. I mean, to a sighted person, I am considered blind from birth, but I still valued my residual vision when I had it and miss it now that it’s gone.