#WeekendCoffeeShare (April 5, 2020)

Posted on by Astrid

I more or less abandoned the What Day Is It Anyway? posts when A-to-Z started, but I wanted to write a check-in anyway. I am joining in with #WeekendCoffeeShare, although it’s a bit late for coffee. I did have a cup of decaf about an hour ago. I also just had a nice orange-pineapple-guava drink. I am not a big fan of fizzy drinks, but thankfully usually we have some non-fizzy soft drinks or juice in the fridge for week-ends.

If we were having coffee, I would ask you all how you’ve been doing on your third week of lockdown. I had a pretty good week. It was better than last week. Last week, after all, I landed in some crises due to missing my husband and all the change that is brought on by this COVID-19 thing.

If we were having coffee, I would share that on Monday, my home’s manager came to talk to me. I was scared at first. Thankfully, she came to reassure me that I won’t be kicked out of the facility for having challenging behavior. That was quite a relief to me.

If we were having coffee, I would share that I made delicious crispy chicken with the staff intern at day activities on Tuesday. I made them with dorito chips for the crisp. I think I’d prefer them with slightly more spicy doritos, but I had intentionally picked the cheese-flavored ones, as I normally don’t like the paprika or chili-flavored ones.

If we were having coffee, I would share that I didn’t do as well on my step goal as I did last week, but I still managed to get to 10K steps once and reached over 8K steps on three other days.

If we were having coffee, I would share that I struggled a bit with health anxiety at the end of the week. Like I mentioned in passing in one of my A-to-Z posts, I’ve been convinced for years that, once I’d find a suitable living place, I would get a serious illness and die. This caused me to feel some intense anxiety when I had some health symptoms. Thankfully, I was able to talk it through with my staff.

If we were having coffee, I would tell you that I would originally have had a phone appt with my community psychiatric nurse from mental health last Friday. I waited for twenty minutes for her to call and then decided to call the secretary. Turns out my CPN was off sick and the secretary had forgotten to tell me. Thankfully, I didn’t have a face-to-face appointment.

Because I was struggling a bit, my staff arranged for me to have a phone check-in with the facility’s behavior specialist. She was pretty good at calming my nerves. She reminded me to look at today only. I won’t die today and I won’t be leaving the facility today. That was helpful.

If we were having coffee, I would share that I’d been trying to record a video and then take a picture of myself for my husband. I reasoned he may like to see me now that he can’t come here. We don’t normally video call or anything, so he hadn’t seen my face in a month or so. Unfortunately, the picture I took showed my eyes and nose only. I wonder how other totally blind people learn to take pictures. Anyway, I finally had my staff take a picture of me. In this picture, I’m holding my stuffed panda. I often cuddle it when I miss my husband, because the panda is the largest soft toy I own. No, my husband isn’t fat like the panda, LOL.

How have you been?

Gratitude List (March 20, 2020) #TToT

Posted on by Astrid

It’s Friday and that means the Ten Things of Thankful (#TToT) linkup is open again. I haven’t participated in a while, but in these weird times, we need gratitude more than ever. Here are the things I’ve been thankful for lately.

1. Relatively tasty dinners. Here at the care facility, we get our dinners from a meal delivery company. Last week or the week before, I complained that we got boiled potatoes like four times a week and that I’d like rice, pasta or the like more often. Thankfully they customize the meals for each resident, so it’s not like if I want pasta, everyone gets pasta. I think my assigned staff told the company. In any case, I’ve had pretty varied meals lately. On Saturday, we got tuna macaroni and I loved it!

2. The sensory room. The real one at the day center and the makeshift one at the home. The day center was still open on Monday and Tuesday, so I was able to use the snoezelen® room then. On Thursday, some of the staff created a makeshift sensory room in the currently empty bedroom at our home.

3. Walking. Yay, we’re not in complete lockdown (yet)! I’ve been grateful for walks often before, but in these weird times, I get to appreciate it even more. I managed to get over 9000 steps everyday this week so far except for today (and I’m not going to make it today either).

4. Getting day activities at the home. I was a little scared that, once the day center closed, we’d get no activities at all. Thankfully, that’s not true. I brought some games from the day center to the home with me and we have enough staff to do activities with us.

5. Going on the elliptical. I went on Tuesday, thinking I wouldn’t be able to use it for three weeks after that. However, two staff members transferred the elliptical to the empty room in our home, so that it’s now a combined sensory and gym room. I went on it for like 20 minutes yesterday.

6. Modern technology. I’m so glad this pandemic is happening now that we have the Internet and smartphones and the like. Otherwise I wouldn’t be able to connect to my husband, my family or the wider community at all. I’m so happy this thing does connect us all in a weird kind of way.

7. Meditation. I use an app called Insight Timer on my phone for meditating, but I hadn’t used it in a while. Then I checked it out and saw they have a whole section devoted to overcoming fear in these weird times. I loved listening to some guided meditations.

8. A phone appt with my CPN from mental health. We had a pretty good session. We actually did get started on some cognitive behavior therapy like we were planning on. She’s also going to get me signed up for the eHealth module with the agency.

9. My husband. Yesterday I was suddenly overcome with fear that I’d never see my husband again or that he’d want to divorce me due to our inability to be together in this crisis. My husband reassured me that I won’t lose him. He’s so lovely!

10. My health. I almost forgot that this thing is about a viral disease that takes actual lives. I so far haven’t had symptoms of COVID-19, but I’m confident that when (yes, it’s most likely a “when”) I do get the disease, I’ll survive.

What have you been grateful for lately?

#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

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