…Not Life Experience Deductible

Posted on by Astrid

Hi all. As I shared before, my birthday is next week. I’ll be 39. This means that next week will mark the start of my 40th year on this planet. It isn’t necessarily something I take too seriously, except that my best friend, who is “only” 36, loves to remind me that I’m the older one of us. Then again, life starts at 40, right?

We were joking about age again this afternoon when my best friend came up with a new mantra for me. I’d have to explain here that, for years when I was in the psych hospital, I had a profile signature at the forum my best friend and I know each other from (and at many other autism and mental health forums). It was: “Time spent in psychiatric institutions is not life experience deductible.” With this mantra, I meant to counter the professionals who told me that proper help and treatment, a long-time place to reside, etc. could wait because I was still young. Yes, seriously.

Now the mantra my friend came up with was: “The first 40 years aren’t life experience deductible.” This is actually the polar opposite of “Life starts at 40”.

While I believe that, indeed, the first (nearly) 40 years of my life matter as much as however long I have left here on Earth, I do believe that it’s never too late to create a brighter future. And that doesn’t have to include huge leaps forward. It can include small sparks of joy. In this sense, nothing I go through or accomplish each day is life experience deductible. Yes, it’s incredibly frustrating that things in the care system progress at such a slow pace, but that doesn’t disqualify the meaning of everyday pleasures.

Written for Fandango’s One Word Challenge for today, which is “mantra”. I love doing these little freewrites.

Bittersweet Birthday

Posted on by Astrid

Hi everyone. As you may know, my birthday is next week. It is a bittersweet day in ways that it isn’t for most people. After all, yes, many adults, particularly those who are childfree, no longer celebrate their birthday because they have the money to buy themselves presents and a day to remind yourself that you’re getting older isn’t special to them anymore. It never was to me, as I hated growing up as a child due to all the expectations set on me.

Now though, I no longer mind getting older. In fact, when I turned 30, it felt exciting because I could finally join the over-30s groups on Facebook.

I do still have mixed feelings about my birthday though. I shared more about this last month. My birthday is rather bittersweet. However, bittersweet does include sweet.

For the most part, I like to turn the end of June into a celebration. It’s summer after all, which is my favorite season. This year, I am once again going to make a cheesecake for my fellow residents and treat them to a burger and salad. I am also still childishly excited about my presents. I know, I can buy myself whatever I want. That is, not really, of course, but I mean I have the financial security to buy my own presents. Still, it’s fun to know what others come up with as gifts for me. Yes, even the rather odd thrift store finds my parents usualy come up with. And by odd, I mean that they’re cheaper in the regular store than at the thrift store. I’m not a thrift store gal, but I appreciate those who are.

Sharing this post with Moonwashed Musings.

When Pluto Was a Planet #SoCS

Posted on by Astrid

This morning, I read on a major Dutch news app that a dwarf planet had been discovered on the outskirts of our solar system, reducing the chances that there’s a ninth planet in our solar system to extremely low.

Wait… there are nine planets, right? That’s what I was taught in school and I’m not that old, am I? Or Maybe I am, since it’s been nearly 20 years since Pluto was officially declassified as a planet. It’s now a dwarf planet just like the newly-discovered one, even though Pluto is four times the size of this one.

That brings me to nostalgia in general. That time when Pluto was a planet, when there were 15 million people in the Netherlands… that’s a song, but there are now 18 million. I guess either time flies or I’m getting old or both, since there will always be 15 million people inn the Netherlands and Pluto will always be a planet. Oh, that’s rather ignorant.

This post was written for Stream of Consciousness Saturday, for which the prompt this week is “that time”. I’ve included the Spotify link to the song because YouTube doesn’t seem to work properly.

Young At 40 Yet Old At 36

Posted on by Astrid

Hi all! A few weeks ago, my spouse sent me a YouTube short about millennials’ reactions to the idea of midlife. According to the American Psychological Association, or that’s what the YouTuber said, midlife starts at 36.

Then I read a blog post today in which the author, now retired, reflects on how she imagined retirement to be when she was still young… at 40.

I am 38. Does this mean I’m in midlife or does it mean I’m still young? It probably depends on your perspective.

After all, with respect to my daily life, since I don’t work or study and since I’m childfree, it allows me the same freedom a retiree would have. I also enjoy many things older people enjoy, such as crafting. That is, often younger women do craft, but it’s more for their kids.

With respect to my health, it’s a mixed bag. I am physically healthier than I was five years ago thanks to weight loss and moving more. I however do notice the effects of my disabilities (and probably my history of obesity too), in that I’m probably less fit than many women my age. For one thing, I do find that my knees hurt regularly.

All this being said, age is in many respects just a number for me. Sometimes, I feel like a lady in her seventies, while at other times, I feel quite childlike, both in a positive and a negative way.

Statistically speaking, I do realize I’m at midlife. This sometimes causes me to worry about aging, but then again I always had this worry that I’d die young. That’s not necessarily specific to midlife. I am pretty sure, in fact, that now that I’m physically fitter, the worry is less about myself. That doesn’t mean the worry has gone, but now it’s more of an existential dread regarding the world as a whole. I don’t think one is easier to deal with for me than the other.

I’m linking up with Talking About It Tuesday and #WWWhimsy.

Share Your World (July 22, 2024)

Posted on by Astrid

Hi everyone. I haven’t touched this blog in over a week, but thankfully have been doing okay. Today, I’m joining Share Your World. Here goes.

1. When you retire (or when you retired) do you have a picture of a small cottage with a white picket fence outside in a quiet village or something similar?
I honestly wasn’t fully sure at first what Di meant with this question. Do I have a picture? No. I have just one physical picture in my home and that one is of myself. Oh wait, she meant whether we envision ourselves living in a small cottage blah blah. Well, I for one don’t. I’m not technically retired, in that I’m not of retirement age and, since I never worked, I still consider that age (which by the time I reach it is probably mid-70s) the cut-off point for retirement. I don’t honestly envision myself ever living in a small cottage. In fact, I’m pretty sure I’ll live in a care home forever.

2. What do you associate with school dinners (apart from school of course)?
I envision another post in the making, as I can talk up a storm about school lunches. We didn’t get a cooked meal at my schools. Well, I did a few times when I’d be having after-school activities. I remember one such meal, a dish called “hete bliksem” in Dutch, which is basically a stew of mashed potatoes, apples and bacon. I detested it!

3. Can you play a musical instrument?
No, not at all. I took lessons learning to play keyboards at the training center for the blind when I was 19, but really didn’t get beyond the absolute basics. I have forgotten all of it since. Like I’ve also probably shared before, I took a few guitar lessons when at summer camp in Russia in 2000, but it took me the whole first lesson to figure out what the instructor, who spoke only English and Russian, meant by the “strings”.

4. What made you smile today?
My being able to teach one of the student staff here about care profiles and him appreciating my “lesson”. Care profiles are the care packages and associated budget each client in long-term care is allocated. I really loved perseverating on a topic I know a lot about without it personally affecting me at that very moment (because the student staff isn’t the one making decisions about my care).

Another thing that made me smile today is being able to describe the above image, which Di used for the optional gratitude section, directly from the web through my screen reader. I think I somewhat agree with the sentiment expressed in the quote too. At least, in my case, life may not always get better, but I do get to experience good days at every age.

#WeekendCoffeeShare (May 11, 2024)

Posted on by Astrid

Hi everyone. Today I’m joining #WeekendCoffeeShare. It’s been a long week, honestly, so time for a cup of coffee, green tea or a smoothie. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s been quite warm and sunny most days, with daytime highs around 20°C. Tomorrow, the temperature is even supposed to reach 25°C. The mornings have been cooler though, as it’s not yet July, obviously. Which makes me think, with temperatures like this in May, will we get a soaring hot summer again? Most likely. I love warm weather, but it’s not like I want summertime temps over 35°C.

If we were having coffee, I’d tell you I’ve been walking a fair bit over the past week. I also rode the side-by-side bike yesterday. We finally figured out how to make it so that I can actually push the pedals properly rather than just moving along with the person who’s on the steering side of the bike.

If we were having coffee, I would tell you that, on today’s morning walk, we came by the intensive support home and several clients were calling out to me. I decided to come over and join them in their backyard. Eventually, one of the staff who did work there when I still lived there, joined us and offered me a cup of coffee. I think that’s nice!

If we were having coffee, I’d share that, finally, it looks like my orthopedic shoes are actually good to wear. The last adjustment was to the front, which scratches the ground due to my ever-worsening drop foot, causing the shoe to need repairing almost on a weekly basis. Now, it’s not like it doesn’t still scratch the ground and get damaged, but not nearly as much as it used to. And the big positive: I can actually wear these shoes without getting blisters. Like, okay, that’s normal, but I only used to be able to wear my specific brand of walking shoes and I’d get blisters from everything else, including every pair of orthopedic shoes I’ve tried before. I have actually been wearing these shoes most of the day for the past few days without a problem.

If we were having coffee, I’d report that, speaking of my drop foot, the physical therapist has been here. We went for a 20-minute walk, during which I didn’t walk with a drop foot as much as before, thankfully. It hasn’t had me convinced that my mobility isn’t worsening, but at least it isn’t as bad as I’d feared. I mean, it could just be normal aging with mild cerebral palsy.

If we were having coffee, I would share that I bought yet another pair of new headphones. Originally, I wasn’t intending on giving up on my AirPods, but because they keep losing connectivity to my computer, I needed headphones that come with a wired option. Well, guess what? The wired option for the JBL Tune 770NC headphones isn’t all that awesome, but the headphones don’t lose connection to my computer when connected via Bluetooth. Besides, it can be connected to both my iPhone and computer at the same time. How I wish I’d known about these before buying the AirPods, that were literally three times the price of these headphones.

If we were having coffee, I’d share that I also finally replaced my desk chair. I got a gaming chair. That’s the reason I have been wearing my orthopedic shoes all day: the chair is too high for me to sit on without shoes on. Other than that though, it’s much better than my previous chair.

I also ordered a table and two chairs for in my little backyard. These weren’t in stock at the store I went to, so I’ll have to come back to collect them. While at that store, I saw a really cute unicorn soft toy and just had to get it.

If we were having coffee, lastly I’d admit that I have been struggling with my mental health again and, as a result, haven’t been too inspired in the creative department recently. I do really hope to get back into the groove soon. I did, last week, buy some kitchen tools, like measuring spoons and a sugar/flour sieve. I’ve only used the measuring spoons for smoothie making so far, but that’s a start at least.

Getting Older, Being Happier?

Posted on by Astrid

Today’s prompt for Friday Faithfuls is aging. I used to think aging was scary. Even at the early age of four, I didn’t want my classmates to sing in a birthday song that I was growing up.

Then, a few years ago, I heard an episode of All in the Mind, an Australian psychology radio show (I listened to it as a podcast), about aging. In it, people were discussing the positive aspects of getting older and mentioned that, for people who got to age ninety or beyond, the happiest age they’d ever been in their entire life was 82. How they got to such an exact number, I don’t know, but I’ve since clung to that number. It helped that my assigned day activities staff at my old care home always said she was going to live to age 93. Since she is eleven years older than me, we had this inside joke about the two of us meeting up near the end of our lives when she was 93 and I was at my happiest ever, ie. 82.

There actually is, or so the people on the show said, some logic behind older people being happier than younger people. The reason is the fact that the amygdala, one of the parts of the brain responsible for registering fear, shrinks as we age.

Also, many people become more resilient as they experience more of life. Whether this is a biological, social or psychological thing or more likely a combination of all three, it does mean older people may be generally happier than those in their twenties and thirties, for example. Borderline personality disorder, also known as emotionally unstable personality disorder or emotion regulation disorder, of which I have some traits, tends to lessen as people get older as well. This lessening of symptoms usually starts in a sufferer’s early thirties. Indeed, though I cannot say I’m necessarily happier now that I’m nearly 37 than I was ten or twenty years ago, I am generally more emotionally stable.

Older People With an Intellectual Disability #AtoZChallenge

Posted on by Astrid

Hi everyone. I’m halfway through the #AtoZChallenge and this means I’m getting a bit weary of it. Today’s post for the letter O is going to be short I think, as I covered issues around cognitive decline in older people with intellectual disabilities already yesterday. However, today I want to focus on aging in general.

People with intellectual and developmental disabilities are at increased risk of developing chronic health conditions at a younger age compared to those without disabilities. These risks sometimes vary depending on the cause of someone’s intellectual disability. For instance, people with Down Syndrome, like I said yesterday, are at increased risk of developing early-onset Alzheimer’s Disease. People with Fragile X Syndrome are at increased risk of heart problems. People with cerebral palsy (which isn’t in itself an intellectual disability, but can be comorbid with it) are at increased risk of developing type 2 diabetes, high blood pressure, stroke and various issues related to their mobility impairment, such as bone problems.

I once heard my staff at my previous care home say that, for people with significant intellectual disability, you need to add at least ten years to their chronological age to get their biological, health-related age. Of course, this doesn’t mean no severely intellectually disabled person can live into their eighties or even nineties – several at the care home next door did. However, it’s a rarity.

People with mild intellectual disability even more so than those with more severe disabilities often live into old age. This poses challenges to the healthcare system as well as causing these individuals dual risk of discrimination, based both on their age and their disability. Additionally, some older adults with mild intellectual disability, who may or may not have been identified as such, are caregivers to their even older parents.

Some people with unidentified mild intellectual disability end up in nursing homes as they age, where staff are not equipped to support them with their disability-related needs. Here in the Netherlands, thankfully, the intellectual disability care system is quite good, and most agencies have homes for older adults.

The Wednesday HodgePodge (February 8, 2023)

Posted on by Astrid

Hi everyone. I’m joining the Wednesday HodgePodge once again today. This week, it has a love theme, which had me a little confused about the date, since Valentine’s Day isn’t till next week. However, who cares? Here goes.

1. Something you’ve done recently that might be considered a labor of love?
I honestly can’t think of anything. I don’t really do much for others, truthfully, shameful as this is. I still haven’t even crafted anything for my husband for Valentine’s Day yet, even though I usually do something each year.

2. What’s one thing you love about being the age you are now?ab
I’m 36. This means, or so I think, still being young enough that my body isn’t completely betraying me yet (although due to my disabilities aging is starting to set in), but old enough to have at least some knowledge of who I am.

3. What do you value more: careful planning or the freedom to be spontaneous? Elaborate.
A little of both, I think. I mean, my days are fairly structured with my day schedule and I still think they aren’t structured enough. My desire for more clarity though isn’t because I don’t want to do anything sort of spontaneously, but because any transition is hard for me. And there still are many in my current day schedule.

4. A home cooked meal or a fancy restaurant? pink or red? watch the sunrise or watch the sunset? wine and cheese or champagne and chocolate?
Home-cooked meal, just because I can’t stand fancy restaurants due to the expectation of my table manners. Pink. Sunset. Chocolate (but skip the champagne please). In all honesty, none of the above particularly appeal to me.

5. What’s your definition of romance? Are you a romantic?
I have no idea about my personal definition of romance. It probably has to do with showing your significant other your love in a special, attuned-to-them way, or something. I’m not a romantic at all. I usually think up ways to show my love in a particularly special way to my husband, but in the planning, things often go horribly wrong so that I end up with nothing at all. As with my idea for a Valentine’s gift this year.

6. Insert your own random thought here.
I am struggling with too many ideas in my head for crafty projects and not enough of something I can’t quite pinpoint to actually make them happen. It could be the fact that my ideas are a chaotic mess and I have no sense of how to actually go from idea to plan to project. Of course, I blame my day schedule, but I’m pretty sure that’s not everything there is to it. Yes, the problem is in part that watching a YouTube tutorial on something takes time, something I do have in only hour-long segments with no guarantee that, when I start on something with one staff (say, watching a tutorial), I can actually follow it up with them too. I am not sure this is the entire problem though.

#WeekendCoffeeShare (April 10, 2022)

Posted on by Astrid

Hi everyone! I’m joining #WeekendCoffeeShare today. I just had a soft drink and a glass of water, but if you’d like a cup of coffee or tea, I’m pretty sure my staff can make you one too. Let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that a fellow client passed away on Wednesday. He had had COVID back in February, like most of us, but he didn’t fully recover. This client had been hospitalized several times during December and January because of seizures, but these finally seemed to be well under control. Unfortunately, COVID was the last straw. He had been on a feeding pump ever since he’d had COVID, but because he became increasingly uncomfortable and unresponsive, the doctor and staff decided to discontinue his feedings on Monday. I last saw him alive Monday evening. He actually lifted up his body, smiled and squealed with delight upon hearing my voice. I made the conscious decision, having already been informed that he’d be dying soon, to keep this memory as my last memory of him while alive.

If we were having coffee, I’d share that I finally managed to craft another butterfly with the silicone mold I’d gotten for Christmas last December. I badly wanted to create a butterfly to go with the fellow client’s coffin, but wasn’t sure whether I could use the mold. However, other tutorials seemed even more complicated, so I eventually decided to give it a try. I did the wings in Fimo Effect color blue ice quartz. The body is pacific blue and the antennae are black.

If we were having coffee, I would also tell you that I have finally given in to the polymer clay color mixing thing and bought a precision kitchen scale. That plus a collection of 60 Fimo soft color recipes. Of course, I haven’t tried Fimo professional yet, but if I have to believe my staff, the colors I’ve mixed so far turn out gorgeous despite not being done with the true primary colors.

If we were having coffee, I’d tell you about the nationwide cerebral palsy day I went to yesterday. Of course, because the ParaTransit taxi had arrived at 8AM and we didn’t have to pick up any other passengers along the way, I was in Apeldoorn, where the day would be held, by 9AM. Thankfully, I had called my mother-in-law when I entered the taxi and she’d made sure to be there on time too.

The day started with a live-streamed lecture by Erik Scherder, a neuroscientist from Amsterdam. The message was quite similar to the one he’d conveyed in 2018 when I’d attended the cerebral palsy day too: that exerting yourself physically is needed to stimulate your overall neurological wellbeing. In 2018, the lecture had mostly been geared towards (young) adults, while yesterday it was more focused on children and their parents.

I attended two workshops during the day. One was on aging with cerebral palsy, mostly geared towards those age 40+, so I was a little outside of the scope, but I could relate (sad as it may be) to some of the increasing discomfort that older adults with CP face. The other was a yoga class.

As regular readers of my blog might know, I am not 100% sure I even have cerebral palsy, in that my parents never told me and, by the time I was an adult, things got so overshadowed with other diagnoses it’s unclear. For this reason, I felt validated knowing that I appeared not to be the most mildly affected person, strange as this may seem. In fact, during the yoga class, we had to loosen up our muscles and my mother-in-law told me to loosen up. Someone else half-joked: “That’s about the hardest thing to tell a spastic.” That made me feel good.

How have you been?