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?

COVID-19 Again

Posted on by Astrid

I was rather late dedicating a specific post to COVID-19. As such, you might think that not much has changed. However, then you’d be wrong. I guess our government was late with the infection spread prevention measures too. Then again, we didn’t have cases of the virus here in the Netherlands until some two or three weeks ago I think. I may be mistaken, as I hardly ever watch the news.

As such, I did not hear the prime minister’s two press conferences, one last week Thursday and one on Sunday. I did not hear his address to the public on Monday either. I did not watch the Lower House debate yesterday, in which the public health minister apparently fainted. I wonder how they did the debate, given that gatherings are now prohibited.

I did hear some about the news from my family and staff though. My sister called on Sunday, wanting to catch up. She works in a restaurant, so she’s out of work now. Thankfully, her husband works in an office job, so he can work from home.

My mother called on Monday. My parents are both retired, so they don’t have to worry about unemployment. However, my mother is 64 and my father is 71, so I do worry about their health should they catch the virus.

My husband’s work is still going on for now. He works as a truck driver in what is apparently a vital part of transport.

Like I mentioned on Monday, the day center I go to closed yesterday. The day center staff are now coming out to our homes to provide us with activities. I took some of my stuff from the day center with me to the home on Tuesday. Some staff even transferred my elliptical to the home.

Thankfully here, going outside for walks is not yet prohibited. I hope it won’t ever be. I’ve been going for walks with staff twice to three times a day each day now. I don’t need to worry about not getting my physical exercise for now.

I haven’t been in a grocery store yet since the measures took effect, since my facility orders groceries online. However, my husband said yesterday that the grocery store was completely out of regular bread, but it still carried lots of raisin bread.

I do feel that we live in a rather interesting time. It feels very odd, but in a way it feels comforting knowing that we have the Internet now.

Mama’s Losin’ It

Reading Wrap-Up (March 16, 2020)

Posted on by Astrid

Okay, so clearly I didn’t make a reading wrap-up a regular feature. In all honesty, I didn’t read much over the first two months of the year at all. Thankfully, I got back into the mood for reading just in time for the near-complete lockdown due to the coronavirus this week.

My day center is still open, but tomorrow will most likely be the last day for the duration of the lockdown. The staff and management need this day to be able to decide on staffing issues, as normally the homes aren’t staffed during the day. We’ll see where this goes.

I am linking up with #IMWAYR again, as well as Stacking the Shelves (hosted by Tynga’s Reviews and Reading Reality). Lastly I’m linking up with the Sunday Post.

What I’ve Been Reading

I started reading Amina’s Voice by Hena Khan in January, so it hasn’t made it into a reading wrap-up yet. I finally finished it on Friday and wrote a review on Saturday.

I finally moved along in Left Neglected by Lisa Genova. No, it’s not finished yet (no, still not!), but with the day center closing soon, I’ll have more time on my hands to read and should be able to finish the book this week.

I’ve also been reading Heroine by Mindy McGinnis, which so far I’m really enjoying.

Stacking the Shelves

Firstly, of course I’ve been stocking up on journaling books again lately. The ones I downloaded are free though. I’ve also been downloading a few books of quotations and Bible verses. Then come some handbooks on intellectual disability and autism that I only intend for reference.

With respect to fiction, I added two books to my shelves in the past week, both downloaded from Bookshare. The first is All the Water in the World by Karen Raney. I got interested in it looking for White Oleander by Janet Fitch, which I’ve been wanting to read ever since it came out some twenty years ago and was recently mentioned on another blogger’s reading list. I couldn’t find that one on Bookshare, so am considering buying it from Apple Books as either an audiobook or eBook. Then I saw All the Water in the World in the related books section.

The second is The Institute by Stephen King. I haven’t read any horror so far yet, but this title really intrigued me. I’m also still looking for horror stories about deadly viruses or pandemics or whatnot. I know, we’re living it now, but that’s exactly why I want to read some of this type of fiction. If anyone has any recommendations, please share them in the comments.

What have you been reading lately?

#WeekendCoffeeShare (March 15, 2020)

Posted on by Astrid

Hi and happy Sunday evening to you all! I’m joining in with #WeekendCoffeeShare, although I’m not inviting anyone over for a real coffee. Like I said yesterday, it was recommended that my husband do not visit me for the duration of the anti-coronavirus measures. Two of my fellow clients still got visitors today, so I was feeling a bit jealous. Then this evening after the prime minister held another press conference, the staff decided people can’t visit here unless they really need to at all. Day activities are still going on as far as I know, but that might change. So anyway, you’ll need to grab a virtual cup of coffee.

If we were having coffee, I would tell you how amazed I am at the virtual community building this coronavirus pandemic does. I mean, never before have I felt so much in common with my blogger pals from all over the world. Of course, I have a handful of blogger friends with whom I have a lot in common anyway, but with the #WeekendCoffeeShare community and the wider blogosphere in general, I don’t. Now we all over the world share in a common experience, no matter how tragic.

If we were having coffee, I would tell you that this week has been pretty awesome in the exercise department. Though I only went on the elliptical once and never reached my daily step goal, I did get 316 active minutes over the week. That’s more than five hours! I did go for regular walks almost each day. Here’s hoping that the coronavirus crisis won’t ever keep me stuck indoors. I’ve heard in Italy people aren’t allowed to go out on the streets at all, but they sit on their balconies anyway.

If we were having coffee, I’d share that I did some great reading over the past few days. I’m not reading as much as I would ideally want to, but I’m at least picking up books again (figuratively speaking, that is, as I don’t raise my Braille display while reading eBooks).

If we were having coffee, I would share that my husband has been making great progress on living room renovations. We at least used to have softboard on the ceiling, which isn’t fire-resistant. My husband told me he took it all off.

He is a truck driver, so despite the coronavirus management measures, he’s expected to go to work tomorrow. He said it’d be crazy.

If we were having coffee, lastly I would tell you that I spoke to my sister on the phone this evening. My sister works in a restaurant, which is closing for three weeks at least. Her husband can thankfully work from home.

I hadn’t spoken to my sister in a while. She has a six-months-old daughter. I was amazed to learn about my niece’s development. I last saw her in November and apparently she’s making great strides.

How are you all doing amidst the coronavirus craze?

Book Review: Amina’s Voice by Hena Khan

Posted on by Astrid

If there’s one good thing coming out of the COVID-19 thing, it’s that I have finally come to enjoy reading again. I wouldn’t know what to do otherwise, as it was recommended my husband do not visit me for the next two weeks. We are to have as little contact with people outside of the facility as possible. That way, it is hoped that the virus doesn’t enter here. I doubt it’ll work, but oh well.

I downloaded the middle grade novel Amina’s Voice already when it first became available on Bookshare a long while ago. I started reading it last January, after I finally finished Pictures of Me by Marilee Haynes and wasn’t done with middle grade yet. Then, adult and young adult novels caught my attention again. This past week, I’ve been reading a lot, so I finally finished this read. My review may contain spoilers.

Synopsis

A Pakistani-American Muslim girl struggles to stay true to her family’s vibrant culture while simultaneously blending in at school after tragedy strikes her community in this sweet and moving middle grade novel from the award-winning author of It’s Ramadan, Curious George and Golden Domes and Silver Lanterns.

Amina has never been comfortable in the spotlight. She is happy just hanging out with her best friend, Soojin.

Except now that she’s in middle school everything feels different. Soojin is suddenly hanging out with Emily, one of the “cool” girls in the class, and even talking about changing her name to something more “American.” Does Amina need to start changing too? Or hiding who she is to fit in? While Amina grapples with these questions, she is devastated when her local mosque is vandalized.

Amina’s Voice brings to life the joys and challenges of a young Pakistani American and highlights the many ways in which one girl’s voice can help bring a diverse community together to love and support each other.

My Review

I am horrible where it comes to reading diverse books. I mean, I read some fiction featuring LGBTQ+ characters and of course I love books portraying disability. However, where it comes to ethnic and racial diversity, I’m clueless. I saw that some book bloggers were featuring books by authors of color for Black History Month, which was last month I think. Then I thought, how do I even have a clue which authors are Black? I obviously can’t tell by their names and, being blind, I cannot see their pictures. Then again, I guess I’m not particularly drawn to books featuring racially diverse characters either, and I can’t use my blindness as an excuse for that. OMG, I don’t want to use this book as a token diverse read and that’s exactly what I do now! And Hena Khan isn’t even African-American. Sorry.

Anyway, I’m saying all this to make the point that I was very clueless when I started reading this book about what it would be like being Amina. I didn’t understand some of the terminology at first, but I grew accustomed to it pretty soon. I actually loved learning more about Pakistani-American culture and Islam.

More importantly though, this book is about friendship. Amina at first isn’t sure about Soojin hanging out with Emily, but finally she learns that Emily is nice after all. I loved reading about the development of their friendship.

I also loved reading about the support Amina’s classmates and their family, including Emily, offer when the mosque is vandalized.

An aspect of the book that isn’t mentioned in the synopsis, is Amina’s uncle visiting from Pakistan. At first, he is critical of American culture and feels Amina is brought up un-Islamic. He too learns to accept differences of culture and religion eventually.

Overall, I loved this book! Its terminology, including the Islamic words, were understandable. It was an awesome way of learning about Pakistani-American culture. I also could relate to the identity issues Amina was facing. In this sense, it really is a cool read for everyone, whether you belong to an ethnic minority or not.

Book Details

Title: Amina’s Voice
Author: Hena Khan
Publisher: Salaam Reads / Simon Schuster Books for Young Readers
Publication date: March 14, 2017

Read With Me

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