April 2026 In Review

Posted on by Astrid

Hi everyone. I’m once again joining Natalie’s monthly recap. April was a month of high hopes. I started my new day schedule, which I figured out pretty quickly wasn’t working, in part because my assigned staff had randomly added several unrelated activities to each time slot. What I had hoped for, was a schedule organized around activities that logically follow one another, rather than it being about rigid time slots. I’m still trying to persuade my assigned staff (who is unfortunately still on part-time sick leave), my support coordinator (who will be off for a long while starting next week) and the behavior specialist (who I have only spoken to once) to change this. However, even though I explained why I believe it’d work in several E-mails, I doubt it’ll be implemented, simply because it requires my staff to be more flexible with my one-on-one.

I’ve realized more and more over the past month that no-one really knows my needs. And that includes me. Some people say I’m autistic and need lots of structure and “clarity” (which they confuse with bluntness). Others believe I have attachment issues and need to build trust in my staff, only to be told that I do chatter to some random temp workers so it’s just me being unwilling. Some say that my emotional development is comparable to that of a toddler while others counter that I’m verbally more capable than some of them. Some say I need to process my trauma, but all the while they add extra layers onto it. And that’s not even speaking about my brain injury, my blindness or the fact that I’m “getting older”, which my physician blames for everything.

This month included a few cooking and baking activities, but not as many as my day schedule allows for. I only did crafty activities twice even though it’s now in my day schedule twice a week. Staff often blame me for not “wanting” even though the few times staff actually asked me, I did get something done. Thankfully, I still do enjoy each time I get to do a cooking or baking activity, work with polymer clay or ride the side-by-side bike.

I’m trying to consume fewer animal products. I was inspired both by my wife, who is a vegan, as well as by the new Dutch food pyramid. I cooked a vegan curry for this side of the home at the end of March. In early April, I cooked a chicken pasta for myself, but the other two meals I cooked this past month have been vegan. One was another curry. The image description app I used correctly identified one of the ingredients as sweet potato, which I think is rather cool.

The other was baked potatoes, onion, bell peppers and a veggie schnitzel (which the EU has decided soon can’t be called schnitzel anymore due to it not containing animal, despite no-one knowing where a cow’s schnitzel is located on its body).

Last month, I said the month was hard only to conclude at the end of writing my post that it was better than I had initially thought. I unfortunately can’t say so of April. The last few days have been slightly less horrible than the weeks prior, but I’m not getting my hopes up about this continuing in the right direction. I feel a little guilty about this, because I did do more cooking activities than I used to do. I’m wondering whether I might be depressed or something. Since I’m also experiencing significantly more sensory overload than I used to, something neurological might also be going on. I’m getting bloodwork soon to rule out a vitamin deficiency (possibly B12), because I’ve been on pantoprazole in a high dose for years and have a history of several deficiencies. I’m not sure what I hope the test will show.

Fatigue (For Lack of a Better Word)

Posted on by Astrid

And yet again I did not blog for what feels like an eternity. To get myself back in the swing of things, I’m just opening the WordPress app and writing. I don’t know where this will lead.

I’ve been feeling off lately. Pretty fatigued. This is nothing new, even though when I talked to my staff about it, they originally wanted to chalk it up to my transition into the care facility.

The thing is, this fatigue thing or however to describe it, as well as what I can only describe as a slow decrease in cognitive energy, has been going on forever. I told my staff about it on Tuesday and told her I want to discuss it with the facility’s intellectual disability physician when I have an extensive introductory appointment with her in November. Not that I have an intellectual disability, but the physician wants to have an appt with me, so why not make use of it? That’s probably still going to happen, but the staff called the general practitioner anyway, because I have a history of vitamin and mineral deficiencies. The GP ordered bloodwork, of which I hope to get the results soon. I guess nothing’s up once again and that probably means that my vitamin B12 deficiency that I had in 2015 was indeed due to poor nutrition. Or something. I don’t know.

The annoying thing is, physically I appear fine. Intellectually probably too, simply because I have a lot of reserve. It’s easy to chalk this whole thing up to autistic burnout, but then again doesn’t one ever recover from that? And does it even get worse at the relatively early age of 33?

I still feel like a burden for raising this issue. I mean, yes, I’m more forgetful than I used to be, but I can probably still pass a mental state assessment. Besides, compared to my fellow residents, I’m like superhuman where it comes to independence. So yes, why even see the intellectual disability physician? But she wanted to see me, so yeah.

Last Tuesday, after I told the staff about my concerns, I felt very stressed. The staff was so very nice! She asked if I wanted to take a bath, but I initially declined, because I knew it was several other residents’ bath time. I know that I shouldn’t be filling in what other clients need, but well. Then she offered to take me to the sensory room at the day center. It was great. I still felt very unquiet mentally after it, but physically I could relax.

I’ve been using the sensory room more often these past few days. The staff in charge of the sensory group at day activities even bought me a blanket that’s mine alone to use when there. This kindness totally amazes me. Of course, I’m still waiting for the other shoe to drop, as I seem to have had so much experience of unhelpful support staff (to use an understatement) that I doubt there’s even ever a place where I can feel well cared for.