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.

Goodbye to Yet Another Social Networking Site? #SoCS

Posted on by Astrid

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “site/sight”. I was immediately reminded of the Reddit blackout. For those not on Reddit, this was started in the blindness subreddit (or so I believe) as a protest to third-party apps to access Reddit being charged enormous fees in order to use Reddit’s API. This would, or so I’m led to believe, essentially render third-party Reddit clients unable to continue as of July 1.

What does blindness or sight have to do with this? Well, the Reddit app is particularly inaccessible with VoiceOver, unlike some third-party apps. While the Reddit site is slightly more useable than its mobile app, it’s still not fully accessible. The fact that third-party apps will most likely be going out of business as of July 1, means that those without sight will no longer be able to access the Reddit app.

While R/Blind is back online, many subreddits are protesting indefinitely by having gone private and disabled posting. This gives me the idea that more is at stake than just the blind community.

I joined Reddit less than three months ago, but I’m pretty sure I’ll have to let go of yet another social networking platform. Oh wait, I can technically still use Twitter and Instagram and Facebook, the latter of which I do still use for its groups, but I prefer not to. I’m glad I still have WordPress, although I wonder for how long.

Sensory Experiences That Influence My Creativity #AtoZChallenge

Posted on by Astrid

Hi everyone. Today is day 19 in the #AtoZChallenge and it’s time for my letter S post. I was initially feeling a bit uninspired, so looked to The Year of You for Creatives again. In it were several prompts about sounds and sights influencing your creative work. I decided to expand on the prompts and write about sensory experiences in general.

Most times, I prefer to work on my polymer clay in relative silence. That is, I do speak with my staff, but only about the polymer clay project we’re working on. I also don’t have music on in the background. To be honest, I haven’t even actually tried it. It may be relaxing.

I sometimes do have an essential oil blend in my diffuser. Smells can inspire me, as they give off a relaxing or energizing vibe, which I can then translate into the colors I use for my polymer clay projects.

I also find that I’m inspired by sights. I mean, I cannot actually see colors anymore, but imagining a particular color in my mind’s eye does inspire me.

When I write, I do occasionally have music or a soundscape on in the background and I often have an essential oil blend in my diffuser. Right now, I have a playlist of rainforest sounds on Spotify on. My oil diffuser currently diffuses a blend of bergamot, orange, spearmint and ylang ylang essential oils.

I find that music, soundscapes, colors and smells inspire my writing, particularly my poetry and freewrites. I have a journal in the diary app Day One specifically for freewrites and I love to write stream-of-consciousness style based on a snippet from a song or a sound. I haven’t yet included the songs themselves into my journal, as that works only with Apple Music and I don’t use that.

What sensory experiences inspire your creativity?

Describing My Favorite Place

Posted on by Astrid

For her first writing prompt, Ebar asks us to describe our favorite place using all five senses. I was thinking of sharing something about my favorite place in the entire world just yesterday. As someone who doesn’t feel she belongs anywhere, the concept of a favorite place is hard to comprehend. However, right now, my favorite place in the entire world is where I am at this very moment: my room in the care home. Below, let me describe it using my five senses.

I can see the light being on. Though I cannot usually see the colored LEDs on my essential oil diffuser due to being blind, I know they are there and appreciate them. I can see through the windows. Well, not right now as it’s dark outside and the curtains are drawn, but during the day, I can.

I can listen to the sound of soothing music on my music pillow, or to my text-to-speech software on my computer or iPhone through my headphones. I can also sometimes hear the door behind which the laundry and trash cans are stored slam shut right below my room. I don’t like that sound, but the staff are looking into the technical people doing something about the door being made less loud. I can hear the sounds of other clients and staff elsewhere in the home. I may not always like those sounds either, but they are the sounds of my room. I was almost going to say they are the sounds of home, but calling my room “home” just feels like it’s a step too far as of yet.

I can feel the fabric of the chair I’m sitting on. I can feel the characteristic floor my feet touch. When I’m in my bed, I can feel the comfort of my weighted blanket and my stuffed animals.

I can smell the scent of whichever essential oil blend I choose to put into my diffuser when I want to. Lastly, I can taste the meal delivery service meals in my mouth. I can select from their menu and, though the meals aren’t great and there’s a particular lack of variety, some are quite delicious. I’m going to pretend we have lasagne for the sake of this post.

What’s your favorite place like?

Appreciating the Five Senses

Posted on by Astrid

In Journaling with Lisa Shea, Lisa asks in one of her journaling prompts on gratitude to name our favorite sense and describe in detail what we appreciate about it. I couldn’t possibly pick one sense, so instead, I’m going to describe what I appreciate about each of my five senses. Yes, five, since I am including sight. Here goes.

Sight

First of all, I obviously appreciate the fact that I could once see colors. I am no longer able to see those, but thanks to my sight and my imagination, I am still able to perceive them synesthetically in my mind’s eye.

I also still appreciate the tiny bit of light perception I still have left. Thanks to it, I can see the sunshine, though I can no longer perceive the beauty of a sunrise or sunset.

Hearing

I appreciate my sense of hearing, because it allows me to listen to music. I love all kinds of music, from upbeat songs to dance to, to quiet instrumentals.

My hearing also allows me to hear the sounds of nature, both in real life and as soundscapes on my phone. I particularly love water sounds, such as streams and waves (not rain!), as well as birdsong.

Touch

I’ve covered most of the reasons I appreciate my sense of touch when I wrote about my hands. However, other than my hands, I also love the sense of touch on the rest of my body. I am a true lover of deep pressure, which is why I have a weighted blanket.

I realize now I should’ve included a separate heading for the vestibular sense. However, it is mostly the sense of touch I appreciate about it when I am on a swing or waterbed or the like.

Smell

Well, do I really need to explain? I’m going to mention essential oils of course! When another blogger asked us which sense we’d let go of if we had to choose one, after taste (which I’ll get to in a bit), most people said smell, but I said hearing. After all, I really can’t imagine having to let go of my beloved essential oil scents.

Taste

The reason most people chose taste to let go of first, is that in essence what we perceive as taste is mostly smell. However, for the sake of this post, I am going to assume that my food tasting is an actual sense of its own. I really appreciate it, though to be fair I’m more of a food texture lover. In terms of both taste and texture, I am undersensitive, in that I need a lot of stimulation to feel satisfied. This is one reason I can’t stand mash. But I love tasting good, spicy food.

What do you appreciate most about your senses?

Linking up with #LifeThisWeek.

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.

Creating a Sensory Room Experience in My Own Bedroom

Posted on by Astrid

It’s been a year since the day center closed. For the most part, it was a good thing for me. I, after all, was often overwhelmed in my day activities group. One thing I miss about the day center though, is the sensory or snoezelen® room. Today, I am sharing how I recreated a sensory room experience in my own bedroom. Since I am blind, I skipped the visual aspect mostly, but I’ll add some ideas for it regardless. That way, you can create a sensory environment for yourself.

Sound

In the day center sensory room, we have a really cool speaker system that’s attached to the bed. It isn’t likely that advanced, so with some speakers at the right position, you may be able to recreate it. I don’t own wireless speakers. However, I found that I can recreate similar effects with earbuds or headphones. I would recommend earbuds for better positioning, but since I don’t have wireless ones, I use my wireless headphones anyway.

I mentioned before that I use an app called MyNoise. This app has over 120 soundscapes and you can customize each individual sound to your own hearing. There are nature soundscapes, but also white noise, Buddhist-like and SciFi soundscapes. I prefer the nature ones.

Like I said, I don’t own wireless speakers, though I might want to invest in some at some point. My phone or computer speakers work okay when listening to music though. There are many calming playlists on Spotify and undoubtedly other music apps too. The ones I love most are Harp Music for Sleeping, Peaceful Guitar and Peaceful Piano. There are also a number of nature sound playlists.

I at one point wanted a music pillow. I may still buy one at some point, but I haven’t yet found one that’s big enough to be used as a sleeping pillow and also works with Bluetooth.

Smell

One thing that my bedroom has and the snoezelen® room didn’t, is an aromatherapy diffuser. I have posted many times about my love for it. Mine cost €40, but they start at as cheap as €15. Essential oils can be a bit expensive depending on the quality you choose. I am obsessed with creating my own blends, so I really like to have a large collection of essential oils. However, if all you want is a nice smell, fragrance oils are also great.

Touch

In the day center sensory room, we had a specially designed waterbed. That felt good, but my own bed is also a pretty good substitute. I usually turn up the head side of the bed slightly.

A thing that’s a true blessing for my senses though, is my weighted blanket. These come in different forms. Some are filled with plastic balls. Mine is filled with sachets filled with granules. It’s a rather expensive blanket at over €500. Thankfully though, my care facility paid for it. With the company we used, you can borrow the blanket on a try-out basis for two weeks for just postage. That helped me make sure it was the right one for me. Mine weighs 12kg, which is relatively heavy considering my body weight of 70kg, but I actually love it this way.

I put a flannel duvet cover over my weighted blanket in winter. When it’s really cold or I need some extra softness for sensory reasons, I use a fleece blanket too.

In addition, I have various soft toys. My favorite is an ordinary stuffed bear. However, I also have a 1.60m large stuffed bear that I got from my mother-in-law for my birthday last year. This one was probably quite expensive. Another of my favorite soft toys, is my sensory cat. This stuffed cat can be microwaved and then gives off heat and a lavender scent.

Sight

Like I said, I am blind with the exception of a tiny bit of light perception. I for this reason don’t benefit from visual stimuli. That being said, I do know a bit about making your room visually appealing to the senses.

My essential oil diffuser works as a night light too. It can be set to seven different colors and I believe also two intensity levels.

Of course, you may want to use your sensory room experience for more than just sleeping. I’m pretty sure in my care home’s makeshift sensory room, the staff put up some form of Christmas lights for the visual effect.

In addition, there are many different visual projection systems. My care facility owns the Qwiek.

Conclusion

I really love my makeshift sensory room in my own bedroom. Generally speaking, creating a true sensory room requires a lot of money. I am so glad though that I could buy some equipment myself or ask for it as a gift. That way, I was able to skip the unnecessary for me expensive things and find things I truly would use. I am very glad that my facility paid for the weighted blanket.

loopyloulaura

Blue to the Blind #SoCS

Posted on by Astrid

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “blue”. The idea is to write about the firsst blue object you see when sitting down to write your post. Well, I am blind, so I don’t see anything blue as I sit here to write. I could be writing about things I know to be blue. The sky is blue. The ocean is blue. Or at least, they’re both seen as blue due to the sun’s reflection on them, or something.

I could be writing about my sensory cat, the soft toy I got for my 31st birthday from my sister. I think the cat is blue. It is filled with lavender, which I know is kind of blue too.

How would I describe blue to a person who’s never seen it? I can, at least, having had color perception as a child, still imagine blue in my mind’s eye. Someone born totally blind can’t. I once wrote a post describing the color green to blind people on my old blog. This was a journaling prompt, just so you know that no actual blind person asked me to describe the color green. Which, I should say, I really can’t.

I mean, synesthesia may be able to help. Blue is a “cool” color. It is the color of the number three in my synesthetic perception. Then again, even with synesthesia, everyone’s perception is different, so that wouldn’t make sense.

Interestingly, there are no blue letters in the word “blue” and the overarching color in the word is orange for the letter B.

I wonder now, does my synesthesia always make words look like the color associated with their first letter. I’m not sure, but the word “green”, even though the two E’s are green, isn’t really green overall. It’s more red with a touch of green. The G is red.

Mondays are green too, even though the word “Monday” has no green letters in it. Fridays are blue and yet again, there’s no blue letters in the word. Isn’t that fascinating?