Opportunities for Peer Support

Posted on by Astrid

Hi everyone. Recently I was talking to my spouse about ways to enrich my life and my spouse mentioned trying to connect to more people through peer support. I have some negative experiences with peer support, for example being kicked out of the Dutch DID peer support group for allegedly being a faker. However, once I’ve found the right tribe, peer support could certainly enrich my life.

Last Tuesday, I attended an online meeting for my regional branch of CP Netherlands, the Dutch cerebral palsy alliance. Even though I’m not 100% sure I have CP, I was welcomed with open arms. Originally, the organizers were thinking we may need to end the meeting early, as there were only five of us in attendance including them. However, we ultimately chatted the entire 90 minutes of the meeting. I even showed the other participants the polymer clay dinosaur my spouse and I had created.

One of the other participants is also visually impaired in addition to having CP. He told me there’s a “young people’s” (ages 25-45) meeting of the Eye Association (for blind and visually impaired people) in Zwolle. Zwolle is about 50km from where I live, so not too far away but not quite in my local area. This means I can travel there at a heavily discounted price using my national ParaTransit taxi card.

I also found out, when looking at the Eye Association website, that there are general meetings in Apeldoorn, Deventer and Zutphen, the three cities nearest to where I live. These meetings, since not catering to “young people” specifically, will most likely be mostly attended by people over age 50, but I don’t mind. I don’t yet have a local ParaTransit taxi card though, so can’t go there yet. My male assigned staff is going to apply for one for me though.

On Saturday, I attended the annual nationwide conference of CP Netherlands. It was less informative than the last few times I attended, since I knew most things the workshop leaders talked about already. However, it was much better with respect to peer support, in that I got to meet several people I’d either spoken with at the online meeting the previous Tuesday or met at nationwide conferences before. I also felt validated once again. And, yet again, I came away with the idea to finally ask my GP for a referral for rehabilitation medicine. Given that most likely my childhood medical records are all gone somehow, I’m pessimistic about getting any answers as to whether I actually do have CP or not. I’m trying to reason that this might be beside the point, but honestly my gut instinct is that it’s not.

I’m linking up with #WWWhimsy again.

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.

Creativity: How I Have Evolved As a Creative Over the Years #AtoZChallenge

Posted on by Astrid

Hi everyone. It’s late once again as I get to my letter C post. I don’t tend to think up my topics in advance. Same with this one. It actually popped up in my mind several minutes ago and here I am writing about my creative journey. Okay, I did my entire #AtoZChallenge of 2022 on creativity so am pretty sure I covered this topic already, but let’s do a repeat in that case.

I am not very imaginative. Like I said on Monday, I most likely have aphantasia. This combined with blindness and my other disabilities doesn’t make me all that great of an artist. And yet, I love to create!

In childhood, I’d often draw dresses and other fashion items, pretending I was a fashion designer. I lost the vision needed to draw around age 12 and, even though my drawing teacher found me paper that would create raised lines when drawing on it, I also hardly drew anything beyond stick figures in boxes from then on. Don’t ask me about their meaning – yes, I know they meant something, but for the life of me I can’t remember what.

I didn’t craft or create art again until my mid-twenties. Then I started card making. Over the next five years followed at least a dozen other crafts. And now, I’m stuck on polymer clay, although to be honest I don’t use the medium nearly as often as I used to.

Creativity can, of course, also involve the written word. I wrote stories from a young age on. I started out writing fiction and the occasional poem. Now, I almost exclusively write blog posts.

I must admit, as I think back on my creative journey, that my level of imaginativeness has probably declined over the years and I didn’t always experience aphantasia. Not that I ever had a rich inner world. Well, that is, I have and always had a strong inner monologue (or inner cacaphony, in fact) and could probably describe an inner world in words, but I couldn’t visually imagine it at all.

I think this lack of imaginativeness is the reason I write personal blog posts mostly and craft mostly realistic figures or things from tutorials. I mean, of course a unicorn isn’t real, but I almost literally copied my style of unicorns from a tutorial. Realizing this makes me feel really sad.

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.

My First Airplane Trip

Posted on by Astrid

Hi everyone. A lot is still on my mind, but today, I’d like to write a lighthearted post. Thanks to John Holton, who provides the Writer’s Workshop prompts, I now have several ideas. One is to write about my first airplane trip. Let me share.

My first airplane trip was also my first trip abroad and my first vacation without my parents. It was a trip from Schiphol (Amsterdam) airport to Moscow on August 4, 2000. I was flying Aeroflot, a relatively okay Russian airline. Still, everyone clapped when the airplane landed successfully, something I recently found out stopped in the 1970s with Western airlines.

One thing I remember quite distinctly is the horrible pain in my ears and head in general during takeoff and landing. I haven’t flown in years, but the memories came back when my spouse reminded me about it, having had a similar experience on a recent airplane trip. Honestly, I can’t imagine people actually taking pictures while the plane is taking off or coming down.

I still did have a tiny amount of vision back in 2000, so remember looking at the clouds once the aircraft had fully risen.

I also to this day remember the film playing in the airplane. Not that I could understand any part of it, as it was in Russian, but my fellow travelers explained to me that it was called something like “I want to go to prison”. The plot revolved around a Russian character who had heard that, in Dutch prisons, inmates get their own TV etc. (something that isn’t exactly true, by the way), so he wanted to flee to the Netherlands even if it meant going to prison. I bet nowadays this film wouldn’t be considered appropriate.

The Wednesday Hodgepodge (February 14, 2024)

Posted on by Astrid

Hi everyone. Happy Valentine’s Day! It’s Wednesday and I’m joining in with the Wednesday Hodgepodge. Here goes.

1. What does love mean to you?
To me, it means thinking that (and acting accordingly) someone is special to you. This special someone could be God, someone else, but it could be yourself too. I mean, I know that in many traditions, it is commonly believed that to love is to value someone higher than yourself, but I do think self-love is love too. In fact, I recently commented on someone else’s blog that, if everyone loves themselves, no-one will be unloved.

2. Is love blind?
I am blind, so my love certainly is. However, whether love in general is blind, I honestly wouldn’t know. I’m not even 100% sure what this expression is supposed to mean. Probably something along the lines of love preventing people from judging the person they love. Which would be weird, since justice is also characteristically thought of as blind. Oh well, maybe it means love prevents people from judging others based on appearance. In that case, as someone who has never been attracted to anyone for their appearance (in fact, I didn’t know my now spouse’s hair color until we’d been together for several months) but seems to be in the minority here, I cannot be trusted to give my representative opinion on this.

3. How do you remember Valentine’s Day as a kid? Do you have any special plans for the day this year?
I don’t remember it as a kid. In fact, I don’t think back in the mid-1990s, it was a thing for kids here in the Netherlands. In high school, I do remember kids handing out roses and can vaguely remember once having gotten one, probably as a prank.

My spouse and I aren’t celebrating this year. In fact, though we used to give each other small presents each Valentine’s Day, this year, since we both have a lot on our minds, we decided to take the pressure off by agreeing we’d give each other presents whenever we felt like it. I honestly feel that, in a committed relationship, love is an everyday thing. If you need Valentine’s Day to remind each other you still love one another, I doubt the relationship is going to last.

4. Are you a fan of the movie genre known as “rom-com”? What’s your favorite (or one of your favorites)?
I’m not a movie watcher, so no. In books, I do like them occasionally but I wouldn’t say I’m a fan.

5. What’s something you recently put your heart into?
Nothing. I’m struggling a bit, so I don’t feel inspired for any bigger (or even smaller) projects.

6. Insert your own random thought here.
I enjoyed a great Thai meal out with my mother-in-law yesterday evening. We went to Buddha Garden, the same restaurant in Apeldoorn I’d been to with my spouse and parents for my birthday. The food was just as delicious as it’d been the last time I went there.

Finding My Crafty Tribe #JusJoJan

Posted on by Astrid

I first started out crafting as an adult in 2012. Back then, it was card making. Well, let me tell you, picking that craft wasn’t the wisest choice I could’ve made. I’m not saying blind people cannot do card making per se, but I for one could not. And, even though at first I was supported in the process by my fellow card makers in what were then still E-mail groups, criticism quickly grew.

Then came jewelry-making. Same thing really. Though I can string together a basic necklace or bracelet and I don’t need kid-level beads for it, I never moved beyond that. I did make the wise choice of not participating in swaps or the like, like I had done with card making.

For a while, I participated in the trend of rainbow looming. Remember that? It’s so 2015!

Then came soap making. Though I can create a simple melt and pour soap, the fun really disappeared quickly because I never moved beyond that and the only thing I can experiment with are different scents.

And then – after a few steps along the way that I decided to skip for brevity’s sake – came polymer clay. Though I am still a beginner at that too despite having worked with the medium for 2 1/2 years and will most likely never move beyond beginner stage, I feel more like this is a medium in which I can use my creativity. Much like with card making originally, it’s a very versatile medium even for total novices.

Within the polymer clay community, I do have my tribe that I stick to. For example, there’s the Dutch polymer clay Facebook group, in which most members and all admins are incredibly supportive of me and my work. In February of 2023, I helped think up the theme for the monthly challenge. It became “unicorns”, of course, which was probably a little too narrow, as I was the only one who ended up participating. However, I do love the fact that the other members do consider me a valued contributor to the group.

This post was written for #JusJoJan, for which the prompt today, coming from me, is “craft”.

I Am (Not!) 154

Posted on by Astrid

Hi all. Today’s topic for Friday Faithfuls is IQ testing. This topic is very dear to my heart, as IQ tests have often been used and even more often misused to determine my entire life path.

When I was twelve, I had an IQ test administered to me. It was the verbal half of the Wechsler intelligence scale for children (the performance half can’t be administered to me because of my blindness). On this verbal IQ test, I got an overall score of 154. According to the educational psychologist writing the report, this is a sign of giftedness.

There were several problems with this assigned IQ score. For one thing, like I said, it’s just a verbal IQ score. The year prior, another ed psych had tried an intelligence test for visually impaired children which utilizes non-verbal components, but had given up on the test midway through because I got too frustrated. This ed psych had also administered the verbal half of the Wechsler scale, but her report doesn’t give an IQ number.

Another thing, which you might figure out from my previous paragraph, is the possibility of a retest effect, since I took the exact same test twice in a year. The ed psych that labeled me with an IQ of 154 did try to find out whether this had actually happened. He asked me whether I had been told when taking the test the last time which answers were correct and which weren’t. I had, in fact, with some, and besides, my father had given me extensive advice on how to answer some questions even more cleverly than I had done. However, I knew the purpose of this assessment: to get the green light for me to go into mainstream, high level secondary education rather than special ed for the blind. I wasn’t at the time really sure whether that’s what I wanted, but my parents did and I, being twelve, didn’t question their authority. So I said “no” and the ed psych concluded there was no retest effect.

I don’t doubt that I have an above-average verbal IQ. But 154, in my opinion, is probably too high. Besides, verbal intelligence is what you need to succeed in traditional schoolwork. What you need to succeed in life, is more related to performance IQ, if you ask me.

Even now though, nearly a quarter of a century later, the number 154 pops up here and there and everywhere with regards to me. Professionals keep assigning new dates to the original IQ score, calling it a total rather than verbal IQ, and making more nonsense out of these ever-intriguing three digits.

I have tried to talk to the behavior specialist about this. What I really want is to be re-evaluated. Not just with respect to (verbal) IQ, but with respect to other things too. She for now only agreed to write a note by the IQ score of 154 saying that it dates back 25 years.

You’d assume that, in intellectual disability services, it wouldn’t matter whether your IQ is 100 or 150, since it means no intellectual disability regardless. However, several of my current staff have admitted being wowed at my IQ score before they got to know me. I hate that the most, being reduced to being 154.

The Wednesday HodgePodge (October 18, 2023)

Posted on by Astrid

Hi everyone. It’s Wednesday once again, so time for the Wednesday HodgePodge. Here goes.

1. What’s something small you tend to sweat even though you know you shouldn’t?
Hmmm, I tend to get nervous and frustrated about a lot of things that are probably minor to others, but to say they’re things I “shouldn’t” sweat, feels a bit invalidating. I mean, I could choose the situation where staff randomly switch up who is going to support me and as a result a staff I didn’t expect shows up in my room. This often feels minor to the staff, but honestly I think they don’t know what it’d be like to depend on an almost countless number of random staff for your everyday needs.

2. October 17th is National Pasta Day…do you like pasta? What’s your favorite? Cooked at home or eaten in your favorite Italian restaurant? How often do you make/eat pasta?
I love pasta. My favorite is either penne pesto or macaroni Bolognese. I know, in the U.S. it’s spaghetti Bolognese but even that isn’t originally Italian, as it’s a combo of Naples’ spaghetti and Bolognese sauce. The way I understand it, in Bologna they eat their recipe only with tagliatelle.

I enjoy my pasta mostly home-cooked. At my old care home, we’d get home-cooked meals on weekends, which was awesome. Here, we get meal delivery service meals each day, but I already agreed with one of the staff that I’ll be helping her cook macaroni Bolognese on the 28th.

3. Do you consider yourself a spontaneous person? Explain.
No, not at all. And usually when I try to do something spontaneously, it means I’ve forgotten something else and I end up majorly messing up.

4. Who are some of your heroes? Tell us why.
Do people who are no longer alive count? In that case, my paternal grandmother, of course. Some of the autistic activist pioneers, like Mel Baggs and Cal Montgomery too. I admire their work in standing up for their and all of our rights to an actually meaningful life.

5. Let’s wrap it up with something light…Taylor Swift…are you a fan? On a scale of 1-10 how much so? (1=who’s Taylor?, 10=a true Swiftie, seen her in concert more than once). If you’re a fan what’s your favorite T. Swift song?
Uhm, 2 I guess. I’ve heard of her. I’m not a fan, but it’s not about her. The thing is, I’m not a pop music fan at all. In fact, I rarely listen to music except for soothing instrumental music when trying to fall asleep. I honestly couldn’t name any of Taylor Swift’s songs if I had to.

6. Insert your own random thought here.
I want to give a shout out to the app Be My Eyes and its AI-based image description component Be My AI. Until this was introduced several weeks ago, all we blind people had were Seeing AI, Envision AI and some other apps that did rather generic image descriptions. Be My AI, on the other hand, does a rather detailed description of images. I can’t copy an image description here because for some stupid reason I can’t get it to write its descriptions in English, but let me just say it’s great.

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.