Trying to Live a Balanced Life

Posted on by Astrid

This week’s topic for Tranquil Thursday is balance. Maggie’s first question is about work/life balance. Since I don’t work and never have, I can’t speak to that. However, it made me think of the ways in which I need to create a balanced life in general.

I don’t currently have formal day activities. Of course, I have four hour-long activity slots a day, but I can spend them pretty much however I please and sometimes (most times, actually) I feel so uncomfortable with the staff assigned to me that we can’t do more than play a simple card game. I do feel I need to find a balance in my life between being active and passive.

Active, in this sense, does not necessarily mean exercising, although that too needs to happen. I probably don’t need to worry about being extremely sedentary. I fell pretty badly yesterday and still I managed to meet my movement goal on my Apple Watch today. Okay, my goal is just set to 300 active calories, but that’s so that it’s within easy reach even on bad days like today.

What I do mean by being more active is engaging more in stimulating activities such as crafting, food prep such as smoothie making, etc. I also intend to be more active where it comes to actually learning about these topics. I mean, I love copying recipes and experimenting just a tiny bit, but it’d be great if I knew about the science behind them. For this reason, I just downloaded a book off Bookshare on the fragrance aspects of essential oils. How great would it be if I could create my own blends rather than relying on some shady subscription website.

This doesn’t mean I need to be active mentally or physically all day. It’s about balance, after all. I also need to rest. But currently, I feel my life is a bit too much “on hold” for my liking.

Another way in which I need to find balance, which Maggie didn’t ask about, is health. Last week, I agreed with the dietitian on a weight range I need to stay in to maintain a healthy (or near-healthy) BMI and not go overboard with my weight loss. As long as I stay within this range, I am in control of my eating habits. I do need to make sure I don’t slip back into my bulimic tendencies though. I will see the dietitian again in mid-June and will ask her to continue check-ins with me, although they don’t need to be monthly anymore I think. Over the past few weeks, I gained a little weight, but I’m still within the agreed upon range, though I do notice I’m having “cheat” foods more regularly than I’m probably supposed to.

Another question Maggie asked is about your life pie. This is a drawing of a pie divided into six slices for each area of life. You then put dots in each slice to see how well you do in each area and connect them to see which area is relatively unfulfilled. This is a visual exercise, of course, which I can’t do, but it did make me think. My life is most fulfilled in the area of exercise and least, unless you count work (but that’s by societal standards only), in the areas of friends and play. That last one might surprise my staff, as I play card games on a daily basis. However, what I mean by this is truly being creative.

Work: Employment and Day Activities for People With Intellectual Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter W post in the #AtoZChallenge. Today, I want to discuss work and day activities for people with intellectual or developmental disabilities.

People with a mild intellectual disability and no additional problems can often work paid jobs that would otherwise be performed by typically-developing adolescents, such as filling shelves in a supermarket or being waiters in a restaurant. They may not be able to complete all duties required for these jobs, but in the Dutch system, if you can do a task that is part of a job and have minimal employee skills (such as coming on time, respecting authority, etc.), you are expected to join the mainstream workforce. I, thankfully, have not been judged to meet these criteria, but then again I’m lucky in that I’ve been on disability benefits since 2004. A few years back, I heard of a profoundly and multiply disabled woman at my day center who somehow was judged to meet the criteria. The work specialist had probably never seen her, as they said she could do simple manual labor, while she had severe spastic quadriplegia.

Alternatively, there are sheltered workshops for people who can work, but need to do things at a slower pace and need some more support than can be reasonably expected within the mainstream workforce. However, these workshops have been facing significant budget cuts.

When this, too, isn’t an option, you enter the world of day activities. Those still can be “work-like”. In fact, most day activities for more cognitively capable intellectually disabled people simulate a work environment. Some of these activities are truly meaningless, in that the staff will let clients fill the same boxes with a number of items repeatedly only to empty them again so that the client can fill them once more. I honestly have very strong opinions on this: if it’s truly what a person wants and there’s no way of making the activity actually meaningful, I’m fine with it. Otherwise, I don’t see why day activities need to be “work” and things like crafting or music can’t be day activities for more cognitively capable individuals.

For more severely disabled individuals, day activities are usually sensorially-based. This includes snoezelen®, which is being in a room where the sensory environment can be completely controlled to suit the individual’s needs. I actually love this, although only for about 30 minutes at a time.

Other activities include cooking and baking, with which the clients usually don’t really help (although some moderately disabled people can) but will experience the sensory stimuli associated with the process. For example, I used to attend a group for profoundly disabled individuals and, when we’d bake something with apples in it, the staff would massage the clients’ arms with an apple. Music, story time, and simple crafts are also common activities for this population.

I, personally, if I had to choose a day activities setting, would choose the one for more severely disabled people. I know I can’t really function in a group setting, which is why I’m stuck at the care home for now, but I honestly have zero interest in meaningless labor.

The Wednesday HodgePodge (August 31, 2022)

Posted on by Astrid

Okay guys, it’s Wednesday again and this means it’s time to join Joyce for the Wednesday HodgePodge. This week, several of Joyce’s questions are related to Labor Day, which is, what, this coming Monday? Time certainly flies. Here are Joyce’s questions.

1. Something you’ve labored over recently?
Nothing really. I don’t have any large projects I’m currently working on, even though I do need to start thinking about what to create for my husband in honor of our wedding anniversary on September 19. I’m in a crafting rut, honestly. I am, however, working hard on my physical fitness. Does that count?

2. How will you rest on Labor Day?
I probably won’t. It’s a regular Monday here in the Netherlands, so I do have my usual day activities. That being said, if I want to rest, I can do so every single day.

3. Margaret Mead is quoted as saying, “I learned the value of hard work by working hard.” Would you agree? Where and how did you learn the value of hard work?
I don’t think I agree. I worked quite hard in school and college, to the point of autistic burnout, but I wouldn’t necessarily say I value hard work all that much. If anything, by working this hard and subsequently suffering burnout, I learned the value of self-care and rest. Then again, I do realize I’m privileged in this respect, in that I got on disability benefits without any trouble as soon as I turned eighteen and sailed through every re-assessment without any difficulty too.

4. It’s National Eat Outside Day (August 31st). Will you? Do you enjoy dining “al fresco” or do you prefer indoor seating?
I had no idea it was eat outside day in the U.S. and it’s past my dinnertime now, so no, I didn’t. I don’t like eating outside anyway.

5. Somehow it’s the end of August. What was the best day of the month for you and tell us what made it so?
The best day of the month was probably the day my husband took me for a drive to Enkhuizen, 100km away, just for some fish. Either that or last Monday, the day I scored 200% on my Apple Watch’s Movement goal, 300% on my exercise goal (but somehow there’s no medal for that) and received reassuring news on my latest health scare. You see, over the weekend when I was in Lobith, my husband noted a large mole on my back and told me to see my doctor about it. Thankfully, it was nothing to worry about at this point and my staff suggested we keep the picture they took for reference should the mole change.

6. Insert your own random thought here.
Today was the last shift for last year’s student staff here. She treated us to French fries and snacks, strawberry cake and she gave me two bars of chocolate. And not just any chocolate, they were stroopwafel chocolate bars. Stroopwafels are my favorite type of cookies, so this is truly awesome. I gifted her a handmade bracelet. She did joke that, since I have money to buy myself an Apple Watch, I should’ve bought her a new phone. After all, her old iPhone was in horrible condition and I’d been nagging her to buy a new one for months, which she finally did a few weeks ago (well, a refurbished one, which I personally would never do). I think she’s happy with the bracelet though.

What I Wanted to Be When I’d Grow Up #Blogtober20

Posted on by Astrid

Today’s prompt for #Blogtober20 is “Wannabe”. I originally had no idea what to write for it, until I saw Mandi’s own post mentioned writing about what she wanted to become when growing up. Mandi chose against this theme, but I’m going with it. I can’t remember whether I ever covered this topic on this blog – I’m pretty sure I did on one of my older blogs, but it might have been here too. Even if I did cover the topic here, I have a lot of new’ish readers, so it may still be interesting.

I remember in Kindergaten we had some type of celebration that included a “fortune-teller” with a crystal ball – of course, it was another grade’s teacher. I remember she asked us all what we wanted to be when we’d grow up. Most girls wanted to be a princess, of course. I can’t remember what I said I wanted to be.

When I learned to write, however, I knew pretty soon that I wanted to be a writer. My parents, realistic as they were, told me up front that writing wouldn’t earn me a living unless I was a real good one. So for money I usually wanted to be a teacher.

I originally wanted to teach small children, of course, because I myself was still young. When I got to the later elementary grades, I made up my mind and wanted to become a high school teacher. Or a professor even. I remember proudly telling people when I was twelve that later I wanted to be a Dutch-language linguist. Later, I wanted to become a mathematician.

This was, at least, what I told others when my parents or teachers were present. Secretly, I made plans to become a psychologist. I wanted to help children or adults with my kind of problems, which I was well aware of by that age.

When I was in my later years of high school, the thought of becoming a psychologist remained at the back of my mind. Openly though, I chose to go the “safe” path and applied to become an English major. Then I made up my mind at the last moment and chose to take a gap year to go to the rehabilitation center for the blind.

I got the opportunity to study psychology, albeit not at university, in 2006. I jumped at the opportunity and did eventually earn my foundation (first-year diploma) in applied psychology. I passed communication skills only if I promised that I wouldn’t continue in this field though. I know, psychology isn’t the best major for an autistic. But I didn’t want to do something I didn’t like, so I picked linguistics as my university major with the intent of doing my minor in speech and language pathology. As most of my readers know, it didn’t work out.

I still intend on someday taking some more psychology or pedagogy classes. I will most likely never work at any paid job though. Still, my original dream of becoming a writer, has at least partly come true.

#Blogtober20

It’s Just Another Manic Monday #Blogtober20

Posted on by Astrid

Today’s prompt for #Blogtober20 is “Manic Monday” and how appropriate this is today! One of my day activities staff celebrated 25 years working for this care agency. For this reason, the manager and a few of her coworkers from the day center came round for coffee and cake. You see, the day center is still not operating as usual due to COVID-19 restrictions and this staff usually provides day activities at my home now. She did visit her normal day activities group for a bit in the afternoon, where currently another home’s clients do day activities.

Anyway, due to the manager and some other staff coming by for a visit, it was really hectic here this morning. I did enjoy a cup of coffee and some cheesecake, but I was really overloaded most of the time.

The staff had really done her best to make us feel festive. In addition to the cheesecake, we got Airfryer snacks for lunch and candy bars with our afternoon coffee. Another staff had also decorated the home with photos of this staff from throughout her career.

Thankfully, I managed a mid-morning walk after the manic events of the manager’s speech and coffee with cheesecake. That went well, although my accompanying staff’s chatter did get a bit on my nerves.

I spent the afternoon so far relaxing in my room or having coffee with a candy bar. I still need to make a present for this staff, like a soap, but that can wait and of course isn’t a requirement. I did after all contribute to the home’s gift to this staff.

This evening, I intend on checking other blogs and just chilling out in my room. If it’s not raining, I might go for a walk after dinner. I may also read a little. Right now, I’m reading a Dutch book chronicling a year in the life of an obstetrician.

Normally, my Mondays aren’t as manic as today. In fact, I like the hustle and bustle of it, compared to boring Sundays. After all, I spend a lot of my Sundays in bed. On Mondays, day activities start back up, so I normally go for a walk or two and/or make a soap or some other craft or DIY project.

Of course, compared to parents or people who work, I’m not as busy even on a Monday. I mean, I still get more than enough time to relax and even the activities I do during the day, don’t feel like chores or work. I do, however, feel easily overloaded by lots of stimulation, so it’s exactly right the way things are right now.

#Blogtober20

Job: What I’d Want to Do If I Were Employable #AtoZChallenge

Posted on by Astrid

Welcome to day ten in the #AtoZChallenge. As with most difficult letters, I’ve had a theme word for today’s post in mind for a few days but wasn’t sure how to go about it. I am pretty tired already, so this will be a bit of a random ramble.

I am unemployable according to the Dutch social security administration. The guidelines for this were revised in 2015 and I was scared that I’d be deemed employable. After all, the guidelines say that someone who can do at least one task that is part of a job (so not a full job) and who has basic employee skills, is often employable. These skills that are part of a job, include for example doing the dishes. I thought I could do this until my husband informed me that I can’t. He also felt I didn’t have basic employee skills such as coming on time and accepting leadership. Apparently, the social security people agreed.

Until I had my major crisis at age 21, I thought I’d be perfectly employable and not just by the current standards. I was convinced I’d be able to have a regular, in fact high-level job. I studied linguistics and wanted to become a speech-language pathologist.

If I were to design my ideal job, I’d however be a type of social worker with some educational psychology involvement. I would be the person to find out what people in complex care situations really need and try to deliver that. Of course, with my poor social-communicative skills, I will never be a social worker. Educational psychology is also pretty much inaccessible a field to the blind because of its heavy reliance on statistics.

I think I’m pretty good though at coming up with creative solutions to problems at least when they are within my field of interest. I can be critical of my staff and often ask them why they do things a certain way. They are not always able or allowed to tell me, as I’m just a client. However, if I were a support worker, social worker or the like, I would not run into this.

Ever since I was old enough to be aware of my own unique situation within the care system at around age twelve, I’ve been wanting to be this kind of ed psych/social worker mix. I was convinced I could help prevent other people in similar situations to mine from falling through the cracks.

I tried to study applied psychology at college one year. With this one year behind me, I could’ve chosen a major such as social work or psychodiagnostics. I didn’t, after all, because my communication skills teacher told me I would be passed on the oral test if I didn’t continue in this field. This feels a little sad to me, but I still have the capacity to learn on my own terms. I will most likely never be employable, but I can still learn new things in this field.