#WeekendCoffeeShare (March 8, 2020)

Posted on by Astrid

Okay, so the 10-day writing challenge is going nowhere. I actually missed yesterday’s prompt reminder and cannot think of anything to write on today’s prompt. Then again, the challenge is to write and that’s what I do. At least, I try. Today, I’m joining in with #WeekendCoffeeShare. I just had a nice cup of coffee and a slice of cake. There’s some left over, so come on in and have yourself some.

If we were having coffee, I would tell you that this week was a mostly good one. On Tuesday, I reached the recommended daily step goal, something I hardly ever do. I walked to our neighborhood supermarket for some groceries for the day activities group and bought some for myself too.

If we were having coffee, I would share that I also got weighed in on Tuesday. Though I had a tiny gain of 100 grams, I am very satisfied. After all, I’ve not been minding my diet much at all lately.

If we were having coffee, I would share about my renewed interest in religion and spirituality. As those who read my blog regularly may know, I don’t really practise any organized religion, but I do believe in God. I was discussing my renewed interest in particularly progressive Christianity with one of my staff on Wednesday or Thursday. She actually invited me to her church. I read one of that church’s pastor’s sermons and it touched me.

If we were having coffee, I would tell you that last Friday, I had a meeting with my support coordinator and the behavior specialist from the care facility and my community psychiatric nurse (CPN) from mental health. It was a good meeting. My CPN is going to look into getting me in touch with the team’s psychologist for trauma treatment. We are also working on my fear of rejection or abandonment. For this purpose, we will incorporate cognitive behavior therapy into our regular sessions.

My husband did warn me not to work on too many things at a time. I agree with him that wanting to progress too quickly is a pitfall for me.

If we were having coffee, I would tell you that my husband came by for a visit yesterday. He didn’t make it here till past 4PM because he had a problem with his car. Thankfully, he was able to fix the car and make it to Raalte anyway. We drove to a nearby forest intending to go for a walk, but there were no roads and I can’t walk through the bushes. Then we drove to McDonald’s, but it was overcrowded, so we ate at the Subway restaurant next door, where we were literally the only people.

If we were having coffee, lastly I would tell you that one of our staff is going to buy us clients Chinese food this evening. The reason is that she graduated from social care school recently. I think I’ll love it.

What have you been up to lately?

Writer’s Workshop: If I Could Change One Thing About Myself

Posted on by Astrid

Mama Kat in one of her prompts for this week asks us what one thing we would change about ourselves if we could. She also asks us to think on why it can’t be changed.

This is pretty much a no-brainer to me. If there’s one thing I could pick to change about myself, it would be to widen my window of tolerance. The window of tolerance is the window at which point someone is stimulated enough that they aren’t bored too much, but not so much that they are overloaded. Each individual’s window of tolerance is different. Some people thrive on challenging activities and exciting stimuli. Others can barely handle any sensory or cognitive demands. I belong to the latter category.

If I’m correct, the window of tolerance also refers to the ability to tolerate distress or frustration. My distress tolerance is and has always been extremely poor.

So why can’t it be changed? Well, I tried. Ever since I was a little child, psychologists have recommended I work on distress tolerance. Now I must say I really wasn’t aware of the problem at all until I was about eleven, but even when I was, I had no idea how to heighten my distress tolerance.

My tolerance for sensory and cognitive demands was manageable up until I suffered autistic burnout at age 21. I mean, I was in classrooms with 30+ students in them, doing my schoolwork at a high level high school. Ever since my burnout though, I’ve hardly been able to function in group settings without getting overloaded. I also can’t seem to handle any sort of pressure.

In 2017, when I was being kicked out of the psychiatric hospital, it was recommended that I do dialectical behavior therapy (DBT). One of the modules of DBT is distress tolerance. The community psychiatric nurse (CPN) who started DBT with me, even wrote increasing my frustration tolerance as a treatment goal without my having asked her to. I didn’t see how I could work on this. After all, seeing this goal written on my treatment plan already created such immense pressure that I felt overloaded without even trying to work on the goal.

I know I have a bit of an external locus of control. This seems to be tied in with poor distress tolerance. I mean, it isn’t that I genuinely think the world owes me a sensory-friendly, low-demand environment. However, I can’t see how I can work on changing my ability to handle sensory stimuli, demands and distress.

Mama’s Losin’ It

After Diagnosis: Dropping a Mask or Seeking Excuses?

Posted on by Astrid

I didn’t end up writing anything for the second and third prompt in the 10-day writing challenge. I also skipped the Insecure Writer’s Support Group day yesterday. It wasn’t really that I felt unmotivated or uninspired, but I was busy doing other things.

For example, I read a post on Facebook by a Mom of a neurodivergent child asking the autistic community whether it was possible that the child could be faking autism. That had me thinking. The short answer is that it’s highly unlikely. It is much more likely that, upon learning you are or may be autistic, you drop the mask.

I was self-identified as autistic for some years before I was formally diagnosed. However, my parents and high school tutor shamed me out of seeking an official diagnosis, claiming I was a hypochondriac for believing I’m autistic. Never mind that hypochondriasis is as much a mental condition as is autism.

At the time of my official diagnosis, I was resisting it a bit. I was in college with a psychology major and I didn’t want a diagnosis to stand in the way of my completing the program. Never mind that I was already failing and a diagnosis in fact helped me get some accommodations.

Then after I was diagnosed with autism, I started dropping the mask. Some people, including my parents and staff at the time, thought I was using my diagnosis as an excuse. Well, I wasn’t. I was experiencing what eventually turned out to be extreme burnout.

To get back to the topic of “faking” autism, I won’t deny that a small percentage of people may want to fake a disability to get services or financial help they don’t need. Others might be encouraged by family or friends to “just” go on disability. At least, I know some people who say they experience this. However, with how strict the social security and care systems are here, it is highly unlikely that someone would be granted benefits or care based on just a diagnosis. After all, a diagnosis is just a label.

Besides, said child had already been diagnosed with a neurodivergent condition. More labels doesn’t necessarily mean more care. It can mean more self-knowledge. It did in my case at least.

For example, I’ve over the years been given at least ten different diagnoses. Some may be correct while others most likely aren’t. Exploring these conditions did give me more understanding of myself. Especially with autism, there is a very positive community surrounding it. That definitely helps me finally find my tribe.

Today’s prompt in the 10-day writing challenge was “After”. The idea of the challenge is to write for five minutes. This post took me much longer, but that’s okay too.

Today I Feel…

Posted on by Astrid

Today I feel pretty awful. Several of my day activities staff were off sick, so I got assigned a relatively new staff. This was hard enough. To make matters worse, I was pretty badly overloaded all day. I did try to relax in the sensory room, but really couldn’t find my calm.

In the evening, I started a Dutch blog again. It’s been the umpteenth time that I started one and I’m not feeling too optimistic about how long I’ll be able to keep it up. Then again, I did finally find a way to link to it from this blog, so that I don’t have to keep switching primary sites each time I comment on a Dutch blogger for them to see it. Of course other bloggers seeing your content shouldn’t be the point of blogging. At least, it wasn’t my point when I first started blogging. I didn’t care about my stats. But that was over thirteen years ago. Now, of course I do care.

I saw a post by a Dutch disability blogger. That blogger in fact inspired me to start a Dutch blog again. She was discussing the notion of “mild” forms of impairments. I generally hate that notion, even though I still often fall into the trap of judging people, including myself, by it.

For example, I am diagnosed with level 1 autism spectrum disorder and probably level 1 cerebral palsy too. Only my blindness can be seen as “severe”. Even so, it’s of course the combined effect of these disabilities that causes me to need the support I need. Thankfully, the long-term care fudning agency got that in my case eventually. It doesn’t get it in some other cases.

Like, a friend of mine shared a newspaper article a few weeks ago about an elderly man who was profoundly hearing impaired, nearly blind and hardly able to walk but still too “mild” for nursing home funding. This man ended up taking his own life. I was incredibly saddened by this and at the same time, it made me feel guilty. I’m trying to turn this guilt into gratitude though.

This post was partly inspired by the first prompt in a 10-day writing challenge I participate in. The prompt was “Today”.

Dentist’s Appointment

Posted on by Astrid

I shared last week that I was going to have a dentist’s appointment soon and was really nervous. I reluctantly agreed with the care facility physician that 1mg lorazepam the night before and 1mg about an hour before my 8:30AM appt should help me enough. It for sure must’ve helped some, but I was a little disappointed in how much of the edge it took off.

I had my appointment today. Went to bed at 8:30PM yesterday evening to hopefully get a good night’s sleep. I didn’t. I half-awoke at least eight times before finally waking up at 4:15AM and not getting back to sleep.

Still, I was calm’ish on the way to the dentist’s office. My dentist’s practice is at the main institution for my care agency in Wilp, which is a 45-minute drive from Raalte. I had fully expected to fall asleep in the car, but I didn’t.

I still didn’t really know what to expect, even though I’ve had a lot of cavities filled before. This was an old filling that needed replacing, so that should be easier. It wasn’t. I did get a topical anesthetic. That reminded me of why I hadn’t had it when I had seven cavities filled at age eighteen. The anesthetic is really, well, weird. I really expected the injection to hurt, but it didn’t. Instead, the feel of numbness and thickness was more annoying.

I was really anxious all throughout the procedure, but had no idea how to make it clear. I mean, my day activities staff was with me and she held my hand, but she apparently didn’t feel me pinching it. Then again, what could we have done anyway?

I had one filling replaced and a new cavity filled. It also turned out I have a pretty bad mouth ulcer near the tooth that needed the filling replaced. That will need to go away on its own. I will need to return in April to get some fillings on the other side replaced.

Now we’re twelve hours on and I do have some slight pain still, but it’s manageable.

I’m just trying to relax this evening. Had a pretty good day overall today. Having lunch with the anesthetic still wearing off, was kind of hard, so we chose to move the Tuesday morning cooking activity at day activities to the afternoon. The tortilla wraps were delicious!

#WeekendCoffeeShare (February 23, 2020)

Posted on by Astrid

I’m late to join in with #WeekendCoffeeShare, but better late than never. I just had coffee. Didn’t track my fluid intake today, as I was a bit lax with it, but I also had water, yoghurt drinnks and green tea.

If we were having coffee, I’d ask you how your week has been? Hopefully the weather has been treating you well. Here in the Netherlands, the week started off pretty well, but over the week-end, we’ve had a storm once again and lots of rain too.

If we were having coffee, I’d share that I did some soap making again early in the week. I made a yellow, banana-scented soap that actually turned out quite well on Monday. I haven’t tried my hand at bath bomb making again this week, but I did try out a bath bomb I’d made last week in the bath last Friday.

If we were having coffee, I would also tell you that this week has been pretty good in the physical activity department. I got over 200 active minutes, 150 being recommended. I wasn’t very active every day, but on the days that I was, I went above my daily goal. In fact, I probably was more active than my Fitbit activity tracker claims I was, as it doesn’t seem to count side-by-side bike rides, as I’m not steering then. I discovered that I really like one of the two side-by-side bikes we have at the day center. With the other, I cannot reach the pedals and I don’t like it if I can’t pedal along.

If we were having coffee, lastly I’d share that over the week-end, I’ve mostly been relaxing. My husband would have come over to take me to a nearby city called Hengelo. I was planning on buying wireless headphones with noise canceling functionality there and then we’d eat out. Unfortunately, my husband was sick, so he didn’t come over.

I bought the headphones I wanted online. Then after I’d ordered them, I discovered that the mobile app they work with, which I’d considered an advantage, had really poor ratings on the app store. Thankfully, the headphones work without the app too and actually the app works fine for me. I’m not sure I’ll keep the app though, as I don’t really need it. The headphones, like I said, have noise canceling. I was a little disappointed in how it worked the first time, but then again I wasn’t sure what to expect. I’ve never had noise canceling headphones before, after all and my room was relatively quiet when I tried it. I will try it out at day activities tomorrow, as that’s what I intended the headphones for. The headphones also have Bluetooth connectivity, which I’d never tried before either. I love that, as I’m now able to walk around the room while having my headphones on. I may try to go onto the elliptical while using them tomorrow.

What have you been up to lately?

Whale Sounds #SoCS

Posted on by Astrid

When I started day activities at the first center I went to when being kicked out of the mental hospital in 2017, I experienced snoezelen® for the first time. Snoezelen® is a type of sensory experience at day activities for people with intellectual disability. The idea is that the entire sensory environment can be tailored to suit the client’s needs. In that room, there was a waterbed. I lay on it listening to a CD called something like Whales of the Pacific. The waterbed had speakers inside of it too, so that it vibrated along with the music.

I grew to love love love that CD. When I left for another day center, I tried to get ahold of this CD but found out it was no longer available in stores. My staff at the old center tried to copy it for me, but that didn’t work. At the next center, they didn’t really have relaxing music I liked, so I usually just lay on the waterbed without listening to music. Their waterbed didn’t have speakers in it either anyway.

Now at my current day center, I have come to enjoy relaxing music again. I particularly like a CD called Songbird Symphony. It has music and bird sounds on it. I was able to find the album on Spotify too, so that I can listen to it while lying in my own bed or while relaxing in my recliner too.

As for whale sounds, I discovered an album on Spotify of whale sounds with music by a group called Robbins Island Music Group. They also release other types of relaxing and focus-oriented music, but I like the whale sounds the best.

Interestingly, I still really don’t like whale sounds without music. I love whale sounds, birdsong and the like, but there has to be a musical component to it too.

Looking back, I remember asking my psychologist at the mental hospital whether snoezelen® would be a suitable activity for me. She didn’t think it would be, as she claimed this is only suited to people with intellectual disability. Well, I love lying on the waterbed, Songbird Symphony surrounding me. I don’t care that I’m apparently too intelligent for it.

I’m joining in with #SoCS, for which the prompt today is “animal sounds”.

Feelings After Watching a Documentary on the Blindness Rehabilitation Center

Posted on by Astrid

Today, I got a subscription to see past episodes of Dutch television programs mostly so that I could see a documentary series called Five Days Inside. It’s where three presenters rotate to visit mostly health care settings or other institutions that are not commonly shown to the general public. The episode of four weeks ago was about the blindness rehabilitation center I attended in 2005. I actually still recognized some of the staff talking to the presenter from when I went there.

Watching it had me very emotional. I don’t know why. I guess because most of the clients who were featured, some roughly my age when I attended the program, are so optimistic about their future despite sometimes having recently lost their vision. When I attended the program, I often felt way ahead of these people and way behind of them at the same time. After all, I had pretty good Braille reading skills. My reading speed at the start was more than twice that which is the ultimate goal of the rehabilitation program for adults. As I learned today while watching the episode, some people don’t even have the tactile ability to ever learn Braille. Most will only be able to use Braille for simple labeling, not for reading books, like I do.

On the other hand, I never learnd to cook. Not in those four months in the center or the eighteen months in an independence training home that followed. It wasn’t for lack of teaching, but I couldn’t manage these tasks. Or even simpler tasks such as putting peanut butter on bread.

Today, I talked to my CPN from the mental health agency. We were talking about my skills or lack thereof. She seems to blame my parents for not having taught me properly. I understand. Then again, with my having had a meltdown each time my parents tried to make me learn new practical skills, it’s only understandable that they gave up. My CPN acknowledged this is a common autistic trait. My parents would say I’m not autistic, just stubborn. Apparently I decided from as early as age seven on that I would never learn practical skills because I couldn’t do them visually. Or maybe because I thought I was too smart for them. I don’t know what my father’s theory boiled down to exactly.

And now I see these blind or partially sighted people who are planning on working or going to college. I don’t know how I feel towards them. On the one hand, I feel envy. I wish I could cook tuna macaroni or zucchini soup. I wish I could ride the bus on my own, then go into town to buy raisin rolls. I wish six months of training could teach me the skills to live independently and go to college or work.

Then on the other hand, I feel an enormous sense of relief. I feel relieved that somehow my support coordinator was able to convince a long-term care funding lawyer that it’s at least partly due to blindness that I can’t.

PoCoLo

Taking a Risk

Posted on by Astrid

Today I’m joining in with Five Minute Friday (FMF). The prompt this week is “Risk”.

Last month, like I shared in passing on this blog, I finally opened up to a behavior specialist at my care facility about my struggles. I was really putting myself out there. In my mind, I took a huge risk, because I felt that if I was open about what I really needed, I’d be kicked out of the care facility. I wasn’t.

Then two weeks ago, as I discussed my issues with my community psychiatric nurse (CPN), she started to suggest I live in an apartment building for autistic people. That didn’t sit well with me. I mean, I don’t care who my fellow clients are as long as I get the support I need and I won’t get that in an apartment building. I mean, of course I do somewhat care about my fellow clients, but not in the sense that I need to be able to get along well with them. They aren’t my friends, after all.

I still feel I’m taking an immense risk by opening up about my feelings. I did so again last week, when I asked the staff at my facility to ask the physician for a script for some tranquilizer. The reason is that I’m due to have an old filling repaired at the dentist’s next week. The area surrounding the tooth is already inflamed and I experience considerable pain from it, so I know it’s going to be hard going in and having it fixed, despite the option of getting a topical anesthetic.

So I put myself out there again and asked for something to calm my nerves. Initially, the doctor told me to take 0.5mg lorazepam. Well, that’s not going to work. So I felt off again, like I was being a drug seeker and a burden. I’m used to being seen as a burden, after all.

Being genuinely open about my feelings, my needs and even my wishes is a huge accomplishment for me. I’m totally used to being judged. After all, if people really see me, aren’t they going to discover how wicked I really am? Apparently not.

Quote of the Day (February 19, 2020): Everyone Sees What You Appear to Be

Posted on by Astrid

“Everyone sees what you appear to be, few experience what you really are.” – Niccolò Machiavelli, The Prince

When first starting this blog, I intended to do a daily quote of the day post. I never did. In fact, my “Quotes” category has only four posts. I do like quotes though, so when I figured I had nothing else to share, I decided to do a quote post again.

Today I checked out a sort of guided self-discovery journal called Happy to Meet Me. This quote was printed above the first prompt. The prompt was about common misconceptions about you. It asks you what you wish people would automatically see about you.

This is harder than I thought. After all, the prompt isn’t what you wish people didn’t immediately know about you. I mean, that would be easy. I wish people would see beyond my blindness. But then what would they see?

I think most people would see me as still somehow disabled if they didn’t see I’m blind. Like my sister said when I was a teen, I don’t appear like someone my age judging from even my way of walking. Of course, I have mild cerebral palsy, but the average Joe won’t have a clue. They’ll most likely think I’m intellectually disabled. Until I start to talk. Then most people will be baffled and start to assume my every way of being different is due to blindness again. After all, most people here are still pretty clueless about autism.

I don’t really know what I wish people would automatically know about me. I mean, back when I was still more serious about blogging, I knew that people had their blog name printed on T-shirts and I even for a fleeting moment considered getting one myself. I’m glad I never did, as honestly in the age of smartphones I don’t think I’d want people in the streets to be able to Google me without ever having met me. I mean, my blog is way too personal for that.

I can think of things I wish professionals would automatically know about me. I wish they understood the disconnect between my intellectual and emotional functioning. I can also think of things I wish friends would automatically know. I wish they’d know about my interests. But what would I want other people in general to know? I guess I’d start with the very basic: I am a human being just like you.

What do you wish people would automatically see about you?