My 2026 Word of the Year

Posted on by Astrid

Hi everyone. I’ve been debating for a few weeks now whether to choose a word of the year (WOTY) this year. I did so some years, but haven’t had a WOTY for a few years. I just came upon Deb’s announcement of her WOTY and this gave me the kick in the behind I needed to decide on one.

So what will my word of the year for 2026 be? I’ve had a few on my mind, but finally settled on: EXPERIENCE.

This year, I hope to experience more of what life has to offer. This includes being more mindful of my daily activities, purposefully choosing ones that enrich me. This includes crafting, cooking and baking, blogging and writing in general and reading. Today, despite struggling quite badly and feeling depressed, I managed to craft and write.

Like I shared when writing about my hopes for 2026, I also intend to expand my social circle. I feel rather insecure about this, being that I’m nearly 40, autistic and multiply-disabled. However, I’m embracing the opportunities to socialize that come my way. Today, I did try out Discord again in hopes of finding the community I used to find on forums back in the ’00s. It’s not the most intuitive social networking app, but I’m getting the hang on it.

I should say that I used to do with Discord servers what I do with Subreddits and Facebook groups, ie. I collect them as it were. This needs to stop. After all, social circles aren’t based on the number of likes or comments on a social media post. It’s about quality, not quantity. I struggle with this. It’s probably in part related to my anxious attachment and the fact that I’ve had more than a few groups I was deeply invested in only to be kicked out. Then again, I didn’t invest in genuine personal connections other than with my wife. That needs to change. If I want to experience all that life has to offer, I have to offer a part of myself too. This is scary, but I hope it’s doable.

My Hopes for 2026

Posted on by Astrid

Hi all! I’m publishing a second post today to share my hopes for the new year. I don’t call them resolutions and I honestly hardly look back at them over the year, but it’s somewhat fulfilling to notice that I did make about half of my hopes for 2025 happen indeed. In fact, when I was talking with my wife about the year 2025, I realized I’d done better than I had expected, contrary to what I said in my yearly review. Anyway, here are the things I hope to achieve in 2026.

1. Get in more and more varied physical exercise. I am pretty sure that this is going to be a hard one, because it looks unlikely that I can go to the gym regularly or go swimming again. However, there are other ways too, like yoga, pilates, etc.

2. Do more meaningful activities, such as cooking, baking and crafting. This was one area in which 2025 has been less successful than I’d hoped but more successful than 2024. I’m still hoping to make that standing unicorn sculpture I mentioned yesterday happen. However, even if that’s not going to happen, I hope to include crafting and kitchen-based activities in my day schedule regularly.

3. Focus on mindfulness and gratitude. I am finding that even a few minutes in the Gratitude app helps lift my mood. I honestly think this is because it’s something new, but I hope that I can keep up the mojo. I already started this habit in 2025 when I wrote the positives and negatives of each day and E-mailed them to my assigned staff. I’ll continue to do so this year.

4. Improve my wake/sleep schedule. Over the past six months or so, I almost always spent most of the morning in bed. I’d really like to change that. Today was good in this respect.

5. Write more regularly. I don’t just mean blogging, although I seriously hope to do more of that too. I mean, my blogging year was better than 2024, but 2024 was about the most disappointing year blog-wise. I hope to write more this year than I did last year. I also started doing Morning Pages again. I however don’t get up early for them, because I know that’s a recipe for disaster. Rather, today, I did mine after breakfast, when I used to hop back into bed.

6. Further taper my medication. I’m having another meeting with the intellectual disability physician, who prescribes my psych meds, next week. So far, I’m pretty sure I’m still able to further decrease my med dosage.

7. Stay relatively mentally stable. This is an almost obligatory item on the list, as I honestly think the above have covered all I can do to help myself along in this respect. Some of the contributing factors to my deep lows have been related to external circumstances. Now I wouldn’t say I have absolutely no influence on those, but it’s not like I’m all-powerful.

8. Stay true to my wishes and needs with respect to my care. This means, for example, that I will continue to assert my right to informed consent for all of my care agreements.

9. Expand my social circle. Like I shared on Monday, I fully intend on going to more meetings in 2026. At least one of those, the brain injury support meeting, is local. I also intend to go to the nationwide cerebral palsy day in April. I intend to go by myself. In previous years, I went with my mother-in-law, but I’m not in contact with her anymore. Besides, I am pretty sure that, now that I know quite a few other participants, being accompanied by her is a hindrance to my social inclusion more than a help.

10. Be more conscious of my food choices and eat more healthily. I stepped onto the scale yesterday evening and the number wasn’t pleasant. Now I do know that part of that is probably holiday weight and part is the fact that I’ve been moving less. Regardless of my weight though, I seriously hope to be making healthier food choices.

Opportunities for Peer Support

Posted on by Astrid

Hi everyone. Recently I was talking to my spouse about ways to enrich my life and my spouse mentioned trying to connect to more people through peer support. I have some negative experiences with peer support, for example being kicked out of the Dutch DID peer support group for allegedly being a faker. However, once I’ve found the right tribe, peer support could certainly enrich my life.

Last Tuesday, I attended an online meeting for my regional branch of CP Netherlands, the Dutch cerebral palsy alliance. Even though I’m not 100% sure I have CP, I was welcomed with open arms. Originally, the organizers were thinking we may need to end the meeting early, as there were only five of us in attendance including them. However, we ultimately chatted the entire 90 minutes of the meeting. I even showed the other participants the polymer clay dinosaur my spouse and I had created.

One of the other participants is also visually impaired in addition to having CP. He told me there’s a “young people’s” (ages 25-45) meeting of the Eye Association (for blind and visually impaired people) in Zwolle. Zwolle is about 50km from where I live, so not too far away but not quite in my local area. This means I can travel there at a heavily discounted price using my national ParaTransit taxi card.

I also found out, when looking at the Eye Association website, that there are general meetings in Apeldoorn, Deventer and Zutphen, the three cities nearest to where I live. These meetings, since not catering to “young people” specifically, will most likely be mostly attended by people over age 50, but I don’t mind. I don’t yet have a local ParaTransit taxi card though, so can’t go there yet. My male assigned staff is going to apply for one for me though.

On Saturday, I attended the annual nationwide conference of CP Netherlands. It was less informative than the last few times I attended, since I knew most things the workshop leaders talked about already. However, it was much better with respect to peer support, in that I got to meet several people I’d either spoken with at the online meeting the previous Tuesday or met at nationwide conferences before. I also felt validated once again. And, yet again, I came away with the idea to finally ask my GP for a referral for rehabilitation medicine. Given that most likely my childhood medical records are all gone somehow, I’m pessimistic about getting any answers as to whether I actually do have CP or not. I’m trying to reason that this might be beside the point, but honestly my gut instinct is that it’s not.

I’m linking up with #WWWhimsy again.

Technology and Its Usefulness for People With Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone. I am back with my letter T post in the #AtoZChallenge. Today, I want to talk about technological advances and their usefulness (or lack thereof) for people with intellectual or developmental disabilities.

There exist a myriad of technological devices to presumably help people with intellectual or developmental disabilities. Some include alternative and augmentative communication (AAC) devices. While these are not for everyone, some people definitely benefit from them. Some of these technologies require a special device, but there is an increasing number of AAC apps available for conventional smartphones and tablets.

Other technologies are used to help people with more severe intellectual or developmental disabilities have different sensory experiences. For example, there’s a thing called the CRDL (pronounced “cradle”), which can be used by a disabled person along with their caregiver. When the device is touched in various ways, it produces different sounds and if I’m correct even vibrations.

Other pieces of technology merely help a person to relax, such as the InmuRelax, a sort of pillow which produces a soundscape when held in order to calm people during the night. Having used the Inmu a few times, I can say I prefer my music pillow, which is far cheaper.

Then there are of course interactive “pets”. These are not stuffed animals and should not be treated like toys, so people with severe or profound intellectual disabilities are probably not suited to handle them. Rather, they are electronics with some fur around them to make them look like real-life cats or (small) dogs, which people can then stroke or cuddle with gently. These interactive animals are mostly intended for people suffering from early to mid-stage dementia rather than for the intellectually disabled, although I’ve seen them being well handled by more capable intellectually disabled people who realize these are like pets, not toys.

Lastly, there currently is a research project going on with “social robots” in long-term care for people with intellectual disabilities. These robots could be programmed to, for instance, remind clients to take their meds, do certain tasks, or they could even ask them questions. It is kind of intended that the robots would become a “buddy” to the intellectually disabled person. I honestly cringe at the idea. Not the reminders or even if the robot woke me up with a cheery “Good morning, Astrid, what would you like for breakfast?”. I am reminded of a time my psychologist, back in like 2013, asked me whether I was okay with a robot doing my morning routine. When I said “Hell, no!”, she saw this as a sign of dependence. I currently start my day on my own anyway, so whether it’s my vibrating, beeping Apple Watch waking me up or a robot, I don’t care. And as for the reminders, I’ve actually thought about asking my staff to help me learn to use a day scheduling app. However, the cringe-worthy thing for me is the “buddy” part. Yes, I know long-term care needs to be cut, but a robot isn’t going to replace human interaction if you ask me.

Friends and Buddies

Posted on by Astrid

This week’s topic for Throwback Thursday is friendship. I was never really good at making friends. I still don’t have any real friends other than my husband. I mean, of course I could consider some of my fellow clients “friends”, but our relationship isn’t as deep as that of normal adult friendships.

In early childhood, I did have one friend. Her name was Kim and we used to make mud castles together. Or anything out of sand and water really. Kim’s last name translates to “peat” and my father used to jokingly call her “Kim Mud” rather than “Kim Peat”.

When I went to the special school for the visually impaired at the age of five, I started in a first grade class despite being of Kindergarten age. All girls in my class were at least a year older than me and they enjoyed “babysitting” me. In exchange, for the next three years, I’d help them with their schoolwork.

By the age of nine, I transferred to a different school for the blind. Though I did have a friend there, I was also an outcast and got heavily bullied.

My best time socially was my one year at the special ed secondary school for the blind. I had one good friend there, but also got along pretty well with everyone else in my class and most kids in my school in general.

All that changed when I entered mainstream high school at the age of thirteen. Within a month, everyone had formed cliques except for me. A few months later, my favorite clique took me under their wing and pretended to be my friends, only to drop me again when they’d had enough of me. I was friendless for the remainder of the six-year program. I didn’t really care. Or maybe I did, but I was determined to show my parents and teachers that I could earn a mainstream high level high school diploma. And I did. Not that I use it for anything now, but oh well.

Another topic mentioned in the Throwback Thursday post title at least is buddies. This reminds me of the autistic student buddy program I was part of during my two months of attending university. This program assigned a psychology student volunteer buddy to an autistic student to help the autistic with planning their coursework or other activities related to their studies. It worked in theory, but the catch was that these buddies were volunteers helping only with certain things for one or two hours a week at most. At the time, you couldn’t get paid support workers for assistance related to college or university studies, as the reasoning was that if you could be a student in college or uni, you should be able to do the planning and related tasks yourself. Needless to say my buddy got overwhelmed within a week. I feel intensely sorry for her.

The reason I mention this, besides it being in the post title, is the fact that I realize I struggle to maintain a distinction between social and professional relationships and, with the buddy, things got even muddier. I mean, friendships are supposed to be reciprocal, while professional relationships are not. For this reason, I am allowed to unload my shit to a professional without needing to listen to theirs. Professionals, however, get paid, while friends don’t. With the buddy, the situation got complicated, in that my fellow students called on my buddy to calm me when I was in a meltdown. That clearly wasn’t her role.

This thing about lack of reciprocity, however, also probably killed off that mainstream high school friendship I pretended to have. I don’t blame myself entirely though: my so-called “friends” also felt obligated to hang out with me out of pity, and that’s never a good reason to be someone’s friend.

Gratitude List (January 17, 2020) #TToT

Posted on by Astrid

It’s been forever since I last wrote a gratitude list. This past week has been truly mixed, but I still feel there’s enough I can be thankful for. I’m joining in with #TToT again.

1. Domino’s Pizza. Last week, I went home to my husband for the week-end. When we were in the car, my husband asked me what I wanted to eat for dinner. I said “Pizza” and my husband in turn asked me whether there’s a Domino’s in Zevenaar, the city closest to our home in Lobith. I said there is. However, we’d been taking an alternate route to Lobith, so my husband said we wouldn’t drive through Zevenaar, so did I mind getting pizza elsewhere? Then he started teasing me, saying stuff like “You’re still a bit sick right?” and wouldn’t it be better if we had macaroni with lots of veggies. Eventually though, he did drive to Zevenaar and we had Domino’s pizza. I loved my chicken kebab pizza!

2. The flu being gone. I feel pretty much as well as possible now.

3. Meeting the neighbors. On Sunday, our next door neighbors organized a New Year’s gathering for the people in our street and the surrounding neighborhood. My husband and I are new, so as a kind gesture to me, they had each person in attendance introduce themselves and also describe the appearance of the person next to them. I liked it. The neighbors seem nice. I at first wasn’t too sure how much to disclose about my situation, but eventually did manage to explain some without launching into some type of self-centered and depressing monologue.

4. The soap making plans. I told you about it already on Monday. I’m hoping my husband will be able to bring my supplies tomorrow. He did ask me to think of another activity we can do together in Lobith, since I asked him to bring all my supplies. I after all didn’t feel it’d be a good idea to let him sort through my stuff. Now that I think of it, several ideas come to mind.

5. Ylang Ylang essential oil. I had this in my diffuser on Monday night when I was too hyper to sleep. It’s a lovely scent.

6. Over 8,000 steps on Tuesday. I walked three times. The other days have also been relatively good in the activity department.

7. The peanut butter-chocolate smoothie bowl we made on Wednesday.

8. Chatting to some fellow clients. Like I’ve said before, most people in my home are non-speaking and severely intellectually disabled, but there are some clients in other homes and at day activities who can speak and with whom I can have a normal by non-disabled standards conversation. I had some nice interactions this past week.

9. Lorazepam. Like I said yesterday, I was in a bit of a crisis. Thankfully, the PRN lorazepam I took worked.

10. Getting my Braille display fixed. Some dots had been stuck up for a few weeks. I thought the thing just needed cleaning, so I was hesitant to call the company to get a tech guy to come over. Turned out two cells were broken. I’m so happy the thing is fixed now. I did okay reading with these few dots stuck up, but still, it was a bit annoying.

What have you been thankful for lately?