COVID-19 Worries

Posted on by Astrid

The coronavirus came to the Netherlands a few weeks ago. Yesterday, we had the first case in the care facility’s town. The care facility hasn’t yet been affected as far as I know, but still, I grow more scared as the days go by.

I’m not scared of falling seriously ill or dying from the virus. Though some of my fellow clients are in their sixties, we don’t have anyone in my home who is otherwise at risk of serious illness or death as far as I know. I am not really sure whether I should worry about my family in this respect. So far, the thought has only fleetingly crossed my mind.

What I do worry about though is the consequences this will have for our society at large. I worry about people stockpiling food. I know my husband got some extra stuff a few weeks ago already when he saw it coming.

I worry about another economic meltdown. My husband has a pretty secure income, having just been hired indefinitely at his job a month ago. He might be forced to take time off, leading to a significant decrease in income, but he won’t be jobless. I am not sure about my income, as I’m on benefits. I don’t know that I will be able to handle yet another round of budget cuts to health care though.

More importantly in the short term, I worry about the need to isolate if you’re infected. What if I get the virus and need to stay in my room 24/7 for two weeks, not being allowed any human contact? Some other blogger idealized this by writing they’d finally have time to read all the books and binge watch all the Netflix series they wanted. As much as I’d like to escape the day center at times and just hide out in my room, I don’t think I could make this work for two weeks straight.

I also worry about staff needing to self-isolate if they get infected. Will this mean there won’t be staff to care for us? My staff has been trying to reassure me, but the letter sent out to clients’ family yesterday, had no information about what if the virus enters the facility in it. Which seems to be more of a “when” than an “if”.

I’m linking up with today’s RagTag Daily Prompt, for which the word is “Isolate”.

#AutisticBliss Is…

Posted on by Astrid

A few days ago, I came across a discussion on Twitter with the hashtag of #AutisticBliss. I don’t follow many autistic bloggers, so I cannot be sure the conversation has been taken over to WordPress yet. Regardless, I wanted to write a blog post in contribution to the topic. Here are a few things I consider sincere bliss as an autistic person.

1. The sensory room at the day center. I mentioned this in my Twitter reply too. Back when I was trying to prepare for leaving the mental hospital in 2017, I asked my psychologist whether I could try out snoezelen® at the intellectual disability unit. She said I couldn’t, as it is only offered to people with severe intellectual disability. I’m so extremely grateful I ended up attending a day center for people with intellectual disability once kicked out of the hospital. Ever since, I’ve come to very much enjoy the sensory room.

2. My own sensory equipment in my room. When at my first day center after leaving the psych hospital, I discovered an online sensory equipment store while looking for birthday presents for myself. I currently own two lavender-filled, microwave-safe soft toys from that store, one in my room at the care facility and one in our house in Lobith. I also have a lot of soft toys that aren’t specifically sensory. I enjoy my exercise ball too, as well as my essential oil diffuser.

3. Being able to hyperfocus on my special interests. One of the main autistic characteristics I love about myself is my ability to perseverate. I love it when I’m in hyperfocus mode and actually have an interest I’m passionate about.

4. Being able to collect things, particularly if they’re cheap or free. For example, I have at least a dozen books of journaling prompts on my phone. Most were free either on Kindle or in Apple Books. Now that I am more money-conscious than I used to be, I no longer spend as much on my special interest du jour. However, I really love collecting free stuff.

5. Stimming. Especially if I’m happy. Stims were often so discouraged that I struggle to find ones I can engage in for fun, but when I can, that’s utter bliss.

6. Having found my tribe. I love being part of the autistic community. It helps me feel that I belong somewhere.

What surprising aspect of life do you find is utter bliss?

Monday, Merry Monday!

Posted on by Astrid

Today is a pretty good day. Of course, I did experience some anxiety while at day activities, but it was manageable. One of the reasons I was anxious was the fact that a new client was supposed to come to our home today. This woman isn’t going to attend my day activities group, but somehow this got me thinking of what if things change at my group and I get less care. Ultimately, the client’s move in was deferred for now for reasons unrelated to me.

I took a walk in the morning. In the afternoon, I went on the elliptical for twenty minutes. I struggle to make myself exercise, but I can tell it’s definitely helping to lift my mood. I get a lot of satisfaction from seeing my stats on my Fitbit activity tracker. Today, I managed to get 59 active minutes and get 250+ steps an hour for six out of nine hours between 9AM and 6PM. I took a short walk in the evening too.

In the afternoon, I also played a card game similar to Uno with my assigned day activities staff. I won all three games. When my husband and I were in the early stages of getting to know each other, we played this game a lot. Then we forgot about it or did other things. My day activities staff bought a deck of cards for me a few months back and I’ve played games a few times.

I read some Wikipedia entries this evening. Read up on the coronavirus outbreak. The coronavirus in some ways both scares and fascinates me. I mean, I heard there’s at least one confirmed case in the nearby town my husband and I visited on Saturday now. I’m not afraid of getting seriously ill if I catch the virus myself, but all the measures to prevent spreading of the disease do scare me. As far as I know, my care facility doesn’t have a plan on what to do if there’s an outbreak here. I do worry about lots of staff falling ill if there is. Back when the Mexican flu pandemic happened in 2009, I resided in the psych hospital. It didn’t hit the hospital, but if it had and lots of staff would fall ill, management and clinicians would’ve been expected to work on the wards.

As a side note, my iPhone’s spell checker still doesn’t recognize the word “coronavirus”. I think that’s funny.

#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”.