The Wednesday HodgePodge (June 22, 2022)

Posted on by Astrid

Hi everyone. I’m joining the Wednesday HodgePodge once again. Here are Joyce’s questions for this week.

1. Something you learned from your father?
Well, I shared about this on Sunday already: my father mainly taught me academic skills. He also was the one who taught me the limited personal hygiene skills I did learn as a child. There’s a story he used to tell me about having to teach some personal care to my mother when she moved in with him at age 22. In this sense, I shouldn’t really feel embarrassed at the fact that my husband had to teach me to use shower gel when I was in my mid-twenties.

2. Do you like onions? Raw or cooked? How about onion rings? What’s something you love to eat that calls for onions?
Onions, mmm, love ’em! Raw is nice, cooked even better. I love onion rings too! A recipe I love and used to cook when I still cooked independently which calls for lots of onions (and garlic!), is macaroni with mushrooms, bell peppers, onions of course and I’d use a mushroom soup that you’d need to add water to in order to turn it into a soup as the sauce. Sadly, that brand of soup eventually added ham to its mushroom soup, which I don’t care for. When I cooked for just myself, I’d also add chicken, but when I’d cook with my husband, we’d skip that as he was a vegetarian back then.

3. It’s officially summer (in the Northern hemisphere)…your favorite and least favorite things about the season?
My favorite thing is, of course, my birthday at the end of June (in five days’ time!). Other than that, I love the longer daylight. My least favorite thing are mosquitoes and other summertime bugs such as the oak processionary.

4. When you think about the summers of your childhood what are two or three things that come to mind?
Vacationing at Vlieland, one of the Wadden Islands. For the first several years that we went there, I loved it. I remember building treehouses with my holiday friends one year when I was eight. The next year, we didn’t return. And not for another several years. When we returned to Vlieland again the summer I was twelve, I didn’t like it nearly as much, because I’d by then lost most of my vision. Besides, kids my age no longer wanted to build treehouses.

5. A hot mess, the heat of the moment, beat the heat, if you can’t stand the heat, catch heat, in a dead heat…choose a ‘hot ‘phrase and tell us how it applies to your life right now.
A hot mess… that’s my country at this point!
Today, two protests took place in the Netherlands: one by farmers against the government’s nitrogen crisis-related policies (or plans, really, as no real policies have yet been implemented), which will likely cause some farmers to need to stop business; the other by Extinction Rebellion, a group of climate activists, also against the government but with the opposite aim. The farmers caused huge traffic jams on various highways because they were coming to the protest in their farming vehicles. The climate activists gained unlawful entrance to the Tax Service main office in The Hague. The police claimed to be powerless against the farmers, but arrested 22 climate activists.

Thankfully, neither protest is impacting me personally, but all the bad news does worry me.

6. Insert your own random thought here.
I was going to ramble on above about the rapid rise in COVID cases here, but I guess that needs its own heading. Last night I had a slight headache and, since that was how my COVID started last February, I worried that I was going to get it again exactly four months after I’d initially contracted the virus. That in turn would mean canceling my husband’s visit today, my birthday celebrations this weekend and my nurse practitioner’s appt on Monday, which, though Monday is my birthday, I decided to go on with after all. Thankfully, I have absolutely no symptoms indicative of the virus now. Please pray I won’t get sick anytime soon.

Life Skills I Struggle With As a Multiply-Disabled Person

Posted on by Astrid

Earlier today, Ann Hickman wrote an interesting list of ten life skills she is teaching her autistic teenager. As a teen, I missed out on most of these lessons she mentioned, leading to a big gap in my skills as well as my awareness of them.

Of course, lack of education isn’t the only reason autistics and otherwise disabled people may struggle with life skills. I struggle with many of them due to lack of energy, executive functioning issues and other things.

Today, I am sharing life skills I struggle with and why.

1. Personal hygiene. I remember vividly my sister gave me a deodorant for my fourteenth birthday as a hint. I didn’t get it. I wasn’t taught about hygiene much beyond childhood, but even if I were, I didn’t grasp the concept.

Similarly, because we had a bath at my parents’ house, I didn’t learn to properly shower. I didn’t know until a few years back that you’re supposed to use body wash when showering each time.

Other personal care tasks, I simply cannot do due to my physical limitations. I cannot clip my nails, for instance. I know some other blind people (presumably without physical disabilities) can, but other blind people I know go to the pedicurist for this.

2. Meal preparation. While in the training home, I tried for weeks to learn to put peanut butter or jelly on my bread without success. My mother can’t do it blindfolded either. My father can, but he assembles all his supplies around him in a very structured manner.

To be honest, I never had to prepare my breakfast or lunch before going into the training home, as we didn’t eat breakfast at my parents’ home and my lunch was always packaged by my mother (or I’d eat a sausage roll at the cafeteria).

There are probably ways I could prepare my own meals if I really need to. I mean, when living on my own, I just ate plain bread without toppings. However, I prefer my staff prepare it for me.

3. Cleaning. This is a difficult task for most blind people, but it can be done. I can dust my desk and table with minimal help if I’m reminded to do so. However, I can’t vacuum or mop the floors. I learned both, but with each house having a different way it’s set up, it’s very hard to find my way around it with a mop or vacuum cleaner.

What I struggle with most with respect to cleaning, is remembering how often each task needs to be done and actually organizing them. For example, in the training home, I’d clean the top of the doors each week despite no-one ever touching them. On the other hand, I’d procrastinate about changing my bed sheets, sometimes leaving them on for months.

4. Getting around. Ann mentions navigation for a reason: regardless of high-tech solutions to help people navigate, they still need to learn to use maps or to use public transportation. For me as a blind person, mobility was always more important, as it additionally involved safe white cane travel. I never mastered this, even with seven years of mobility training in special education and many more lessons once out of special ed. I only recently learned that more blind, neurodivergent people struggle with white cane usage.

Currently, I can for the most part move around inside the care home by myself, but I cannot at all get around outside without a sighted guide. My parents used to blame this on lack of motivation. While I am pretty sure this, as well as anxiety, does play a part, it is also about other things. Besides, lack of motivation is not the same as laziness. In my case, it feels as though the activity of independent travel overloads me cognitively to the point where I feel incapacitated.

I am assuming Ann’s son is “just” autistic, whereas I am multiply-disabled: autistic, blind and mildly physically impaired. However, with this article, I want to make it clear that there are many reasons a disabled teen or young adult might struggle with life skills and, for this reason, many different approaches to supporting them.

Keep Calm and Carry On Linking Sunday
loopyloulaura

My Worst Fear

Posted on by Astrid

This week, one of Mama Kat’s writing prompts is to share one of your fears. I have a lot of fears and phobias, to be honest. I probably would even meet the criteria for generalized anxiety disorder if it weren’t for my autism, which encompasses a lot of worry in itself already. In fact, when my former psychologist had removed my autism diagnosis, she at one point considered diagnosing me with GAD.

She ended up diagnosing me with dependent personality disorder though. And, as much as I used to fight this diagnosis, it fits in some important ways: being left all alone is probably one of my worst fears.

I obviously didn’t tick that box when filling out the screening questionnaires for my independent second opinion after said psychologist’s diagnosis. I also ticked the box for “very difficult” rather than “impossible” on the WHODAS (assessment of level of disability) question on being on your own for a few days. Obviously, that only got me assigned a lower number on level of disability, not a different diagnosis, but I wasn’t aware of this. Besides, my diagnostician was able to see through my not having ticked that one box, so, though she didn’t diagnose me with DPD, she did recommend I work on my self-confidence.

Whether it means I’m pathologically dependent or not, I don’t care though: I fear being left to my own resources. And to be honest, no amount of kicking me in the butt has helped with this so far. Neither have so many years of independence training and therapy. I guess I just need to live with it. And that’s okay at least as long as the authorities aren’t going to see this as a reason to revoke my access to long-term care.

I mean, it’s not just fear. I fear being left to my own resources because I legitimately have no clue how to live my life independently on a daily basis. I can, with a lot of difficulty, perform most activities of daily living, such as showering, brushing my teeth and getting dressed. I now mostly get help with these, because it costs me a ton of time and energy having to do them on my own. For those saying I used to do these things by myself, I would like to add that this came at a cost to my dental health and physical hygiene. But if I really had to, I probably could do all of this. However, where it comes to housework, I’m pretty much lost. I cannot prepare my own food. Like, when I lived on my own in 2007, I ate bread without toppings because I couldn’t put them onto my bread. I wouldn’t die doing this for a few days, of course, and there the “very difficult” answer on the WHODAS may be correct. But it would be my worst fear come true.

Mama’s Losin’ It

A Perfect Health Day

Posted on by Astrid

I can’t remember when or why I bought the book 1000 Journal Prompts That Will Transform Your Health by Sophia Ley, but today, I felt myself drawn to it. In it, one of the prompts asks us to describe a perfect health day. Here goes.

I get up at 8:30AM. I start my day with prayer. This may not be a direct physical health habit, but it certainly helps me get in the right mindset for focusing my day on what’s right. I then get showered if it’s a day I do this or else I get a quick wash.

After I get dressed, I eat breakfast. I eat yogurt with a little crunchy muesli. This may not be the healthiest food choice physically, but it is something I definitely love and don’t really feel I want to give up on. I also eat some fruit.

After breakfast, I take a little break for writing in my journal and Bible reading. Then I go on the elliptical for 20 minutes. I’m assuming it’s a weekday. If it isn’t, I can go for my first walk instead, as my one-on-one will be there. In that case, I’ll go on the elliptical during the afternoon.

When my day activities staff arrives at 10:15AM, I have coffee. I don’t have a cookie with my morning coffee.

Then I go for a walk of about 25 to 30 minutes. After this, I usually will have some time left to do some of my crafting before my staff goes to help prepare lunch.

For lunch, I have two crackers or slices of bread with peanut butter or jelly. Again, these aren’t the healthiest food choices I can imagine, but way healthier than my current choices of lunch food on most days. I also have some slices of cucumber or some cherry tomatoes and a serving of fruit. I will have another serving of fruit in the evening.

After lunch, I will spend some time doing weight training and resistance band exercises. Then, when my staff returns from their lunch break, I’ll go for another 25-minute walk. Then I’ll have another cup of coffee, again with no biscuit.

I will spend the rest of the afternoon on my hobbies, such as blogging or reading. In the evening, I will go on two more walks with my one-on-one. In total, I will reach my goal of 10K steps.

I will have my evening meal from the meal delivery service as usual. For dessert, I will have a small serving of fruit yogurt.

In the evening, I will drink green tea rather than coffee. Throughout the day, I will also make sure I drink at least two liters of water. This means I will have a glass of water after each walk and with each meal, as well as with each medication round. I will obviously take my medications as prescribed. When it’s a perfect health day, I hope I won’t need my painkillers anymore, but that seems to be beyond my control.

I will brush my teeth twice a day, morning and evening. At 9:30PM, I will start to unwind for bed. I will say a prayer. Then, I will diffuse a relaxing essential oil blend and start a soothing sound track on Spotify. I will go to bed at around 10PM. I will probably fall asleep within half an hour and have a good quality of sleep.

Looking over this, some of these things seem relatively easy to include into my day. Some are harder. Of course, I didn’t take into account the possibility of a severely rainy day when I can hardly go for walks. I’ll have to think of alternative ways of getting active then.

Independence

Posted on by Astrid

In last week’s Sunday Poser, Sadje asked what independence means to you. Her question was related to Independence Day in the United States. Of course, one can view independence and freedom in light of one’s national political situation. For example, the Netherlands is a pretty stable democracy. The country has been independent in its current form ever since 1815, though Wikipedia even lists 1648 as the Netherlands’ independence year.

I for one, however, tend to apply independence and freedom much more personally. By independence, I refer to the skills I can do by myself, ie. self-reliance. This includes eating, toileting, dressing myself, writing my blog, etc. But it also includes the skills of self-determination.

I think self-determination is particularly important. By this I mean the ability to know what you want and make it clear in some way or another. Everyone, the disability rights movement assumes, has this capacity. Yes, even people who can’t talk and are labeled as profoundly intellectually disabled. However, it is so commonly overridden by well-meaning family or “helping” professionals.

I remember a client at the first day center with my current care agency for people with intellectual disability I attended. This client had severe cerebral palsy, was profoundly intellectually disabled, couldn’t speak, had epilepsy and was blind. However, somehow, the staff had figured out that bergamot essential oil was her favorite scent.

The same client was also sometimes called “spoiled” when she cried and then was quiet once the staff put a vibrating hose around her body. I’d say she was making known what she wanted. She was using her independence!

With respect to independence as freedom, I, for one, think that self-determination is more important than self-reliance. For example, I get help with my personal care. I myself asked for this after I noticed that it cost me a lot of energy to do it myself. Even though I could, with a lot of verbal instruction, take care of my personal hygiene independently if I really needed to, I decided this isn’t a priority for me. My staff, thankfully, agree.

What is important to you where it comes to independence?

I am also joining MMA StoryTime’s Word of the Day.

Accomplishments for the Day (June 6, 2021)

Posted on by Astrid

Hi everyone! I was feeling a little low this morning after a restless sleep. This afternoon, I felt even lower after I misinterpreted a comment from my husband about my (lack of) Bible knowledge as criticism. It thankfully wasn’t meant that way. Right now though, I am feeling quite accomplished. Let me share what things I achieved today.

1. Got showered and brushed my teeth and hair. Personal hygiene is a struggle of late, so I am very proud that I got these things accomplished.

2. Got weighed in. I had gained a little over a pound over the past few weeks, but I’m okay with that. After all, my diet hasn’t been too healthy lately. It could also still be the fact that I literally stuffed myself full of fries yesterday.

3. Made relatively healthy food choices. I mean, I had three meals that weren’t too unhealthy. For lunch, I had a grilled cheese sandwich at a sandwich place, but I don’t think it was very unhealthy. I had mini rolls for breakfast and my care facility’s meal service’s meal for dinner. I did have chips this evening, but I kept to one serving.

4. Broke my daily step record. This is the one thing that helped me move from feeling low to feeling accomplished. My old record was 20.2K steps. Now, I have walked 20.5K steps today. Only 200 more to go and I’ll have reached 100K steps in the past week.

5. Read my Bible. I signed up for the Bible in a Year E-mail service earlier this week. Because I had selected the start-to-finish reading plan, I’m now only at Genesis 21-23. Discussing my progress with my husband got me a bit discouraged. He recommended I, being a Christian, read the New Testament first, then got to recommend that if I read the Old Testament now anyway, I could start with Daniel. So I decided to read Daniel.

To get myself acquainted with the story, I got the Immersion Bible Studies book for Daniel, because I like Immersion. That study though combined Ezekiel with Daniel and I’m not intending on reading Ezekiel anytime soon. So I got a little confused and this further discouraged me.

Then I texted my husband in a bit of frustration. He thankfully replied that he had just meant that Daniel might be a more interesting story than most of the rest of the Old Testament. He wasn’t meaning to question my faith.! That lifted my mood again and encouraged me to study the Bible some more.

What have you accomplished today?

Accomplishments for Today (August 25, 2020)

Posted on by Astrid

It’s been a few days since I last wrote a blog post. I just wasn’t inspired. I still am not. For this reason, I thought I’d revisit a type of blog post I did a few times before and share my accomplishments for the day. Here goes.

1. Stayed in bed all night. I’ve been struggling with keeping a proper circadian rhythm lately, sleeping a lot during the day and not at night. Though I didn’t have too restful a sleep last night, it was good enough and I managed to stay in bed all night. I went to bed at 9:30PM and got up at 8:30AM. I also only napped for about an hour this afternoon.

2. Ate three healthy meals. We had cheesecake with our coffee today because it was another client’s birthday, but other than that I ate quite healthily today. I had yogurt with crunchy muesli for breakfast, three slices of bread for lunch and carrots, potatoes and fish for dinner.

3. Brushed my teeth, hair and used deodorant. Personal hygiene has been a struggle again lately, so this is good.

4. Had a productive appointment with my community psychiatric nurse. We discussed some of the sources of my abandonment/separation anxiety and also went into my fear of being one giant attention-seeker.

5. Did 45 minutes of mindfulness. At the appt, my CPN suggested I try mindfulness more often. She said she used to do a 45-minute daily meditation and thought I might benefit from it too. She didn’t specify which meditation she used, but I selected a body scan off Insight Timer. I actually did pretty well doing it. Of course, I couldn’t keep still the whole time, as I just had to scratch a few times when I itched. That should get better though.

6. Read for an hour. This isn’t really an accomplishment lately, as I read most days, but it’s still good.

7. Went for two walks. This is more of an accomplishment now than it used to be, as I’m sometimes seeking excuses not to go for walks. I also used the stairs, which I’m not always doing of late.

8. Did some weight-lifting exercises. I just remembered to do these while writing this post and so took a break from writing to do them. I also did some hand strength exercises.

What is something you are proud of yourself for today?

Today’s Accomplishments (October 29, 2019)

Posted on by Astrid

Last December, I wrote a post in which I shared my small (but important!) accomplishments for the day. I wanted to make this a regular feature, but didn’t. I am not promising it will be this time around, as pressure to do something every day or week with regards to my blog, usually overwhelms me to the point where I quit prematurely. Such was the case with the 31-day writing challenge this October and it’s been the case before. I’m however definitely hoping I can do these more often. Anyway, here are my accomplishments for today.

1. Took good care of my personal hygiene. It’s Tuesday, which means I start my morning routine all by myself and don’t get any help with my personal care. I usually take a quick shower then and often forget to put on deodorant, brush my teeth and hair. I not only took a more thorough shower than usual, but did use deodorant and brushed my teeth. I don’t think I brushed my hair.

2. Took my morning and evening meds, including multivitamin. I got the multivitamin added to my meds recently as I am deficient in folic acid (one of the possible reasons for my fatigue). I often have to remember to ask the staff for this one myself, as it isn’t in the med management system yet.

3. Had three relatively healthy meals. I had two slices of bread with chocolate spread on it for breakfast. That isn’t the healthiest possible choice, but it’s okay. I had two slices of bread again for lunch, plus a banana and a pear. For dinner, we had boiled potatoes, a hamburger and kohlrabi.

4. Walked twice today. Well, three times really, as I also took a short walk in the morning with the day activities staff and two other clients. I took a longer (about 20 minutes) walk in the afternoon with just the staff and took another walk with the living facility staff and one other client in the evening. I don’t have my Fitbit anymore, as its battery is dead and I can’t find its charger, but I’m confident I met my goal for active minutes for the day.

5. Did a short mindfulness meditation. Okay, it took only three or four minutes, but the act of starting a guided meditation in itself is already an accomplishment.

What have you accomplished today?