Decisions Made for Me

Posted on by Astrid

Hi all. I’m joining Denyse’s #WWandPics once again. This week, she talks about the letter D words that relate to her, among which “decisions”. I wanted to write about decisions too, but this time, about the reality of decisions being made for you. This may not happen to non-disabled adults much, but it happens to me all the time.

Like with my upcoming move. I know next to nothing about my future care home and, when I told my assigned staff that this frustrates me, she pointed out that I’ll move there anyway so how would giving me more info help?

Honestly, I wish I were given some way to have any level of input into the process. I know the reason the powers-that-be have decided to give me no choice is probably because they feel I’m too critical anyway. They believe I’m looking for the perfect home, which they and I know doesn’t exist given my rather complicated care needs.

They always tell me that I wanted to leave the care facility in Raalte, which was near-perfect compared to my current one. I did, in a way. That is, I wanted to have a discussion with the behavior specialist to explore the possibility of me finding another care home. That’s not the same. And they were the ones not being up front with me about all the things I’d lose if I wanted to live on institution grounds and have fellow clients with whom I could speak. They may’ve technically allowed me to make the decision to move here, but they gave me the bare minimum amount of information to make that decision.

Now they’re not letting me make a decision at all. It makes me feel intensely powerless and that’s a really distressing feeling. And who will be in trouble if my behavior doesn’t improve? Yup, me. Some staff have come to call me spoiled, in fact, so the burden is on me to show them I can handle whatever this new home has to offer. If I can’t, well, too bad, then I either have to learn to live with the decisions made for me or find myself another way to cope.

Colors, Changes and Connections

Posted on by Astrid

Today, I am joining Denyse’s #WWandPics link-up. Denyse apparently has been sharing posts following an alphabetical theme. Today, she talks about the letter C. I could do this alphabet thing too, but then I’d have to start at A. Instead, I’m taking inspiration from her “C” words to write my post.

Denyse’s first “C” word is “change”. Of course, things are changing in my world too, though I’m not yet sure when. I got informed last Saturday that my new care home will keep my current day schedule for now. That’s in spite of the fact that it apparently indeed does cover two hours more care a day than I get funding for. I still don’t fully understand the technicalities, but I don’t really care, as the number of support hours I get according to my day schedule was never the problem. It was how cut up into at most 60-minute activity blocks it is. It’s okay though. Better than the alternative my staff have been suggesting, saying I need to find a way to cut back on those two hours and go down to 30-minute activity blocks.

I asked my support coordinator about having a care plan review. We haven’t had one in nearly two years due to my moving to my current home right when my last review was due. My support coordinator is going to get the new one to schedule a review once I’m settled there and he will attend too.

He also finally sent my mother-in-law an activation code to access the daily reports on me and my care plan. As far as my mother-in-law is concerned, they mostly report really superficially. For those who are wondering, back several years ago it was agreed upon that I wouldn’t get access because it might cause distress, but I did want someone in my family to have access especially now that I’m struggling significantly. Most daily reports apparently go something along the lines of “mostly had a good day, slightly stressed over ___”. I don’t know whether it’s deliberate, but that’s certainly downplaying my distress.

The support coordinator for the new home did ask my current support coordinator to confirm what color paint I want on my wall, despite the fact that I’m pretty sure I already told him through my mother-in-law. It will be pink, since lilac wasn’t available. Truthfully, all other colors except maybe blue sounded awfully ugly to me. And yes, despite being blind, I do have some concept of color from when I could still see a little.

Through all this change, I am happy about my online connections. I have multiple disabilities, so am in Facebook groups for various conditions. I am also in a few Facebook groups for former preemies or NICU babies in general. The Dutch one is organizing a get-together in September. I sent the organizer an E-mail to sign up, then decided to ask some further questions in the Facebook group. As far as I’m aware, the get-together will be held in a café-style meeting room, so I’ll most likely be able to get the ParaTransit taxi driver to get me right to where I need to be. On the one hand, I’m reminding myself that I used to attend the DID charity meetups independently each month from 2011 till 2013 and even rode the train there by myself. On the other hand, it’s 2023, not 2013 and I’ve probably declined cognitively at least a little. Then again, if I don’t try, I’ll never know if I can do this. I would really love to connect to other NICU survivors, as honestly I’m beginning to realize I might not be alone in experiencing significant attachment issues and they might in fact have started this early on.

Activities I’ve Enjoyed Lately

Posted on by Astrid

Hi everyone. I’m feeling a bit uninspired, but I feel in the mood for a positive post. Not because I feel particularly good – not very bad either though. I’m going to share some activities I’ve enjoyed lately. Here goes.

1. Yoga. Well, yoga without the fluff. I have been doing physical therapy for a few weeks now to help with my back pain. Though initially it was my enthusiasm for yoga (which the physical therapist casually mentioned) that got the therapist to think I might benefit from it, I soon found out that all the breathwork and need to feel present in my body was rather overwhelming. Instead, last Monday, we just did the exercises and that’s it.

2. Jumping on the trampoline. Today, the physical therapist had managed to borrow a side-by-side bike, so we were able to ride it to the large trampoline on the other end of institution grounds. I initially struggled a bit, but this was mostly due to my staff and the physical therapist trying to support me whilst on the trampoline. Once I started to jump on my own, it went really well.

3. Diffusing essential oils. It’s too bad the site I discovered with literally thousands of blends on it, is probably kind of shady, since you need to pay to get access to the blends (after a week’s trial period). Not that I create new blends everyday, of course, but I just love looking at everything. I did just put one of today’s featured blends into my diffuser tonight. Not sure yet what I think of the smell, but then again it usually takes a while for the scents to properly blend.

4. Playing dice games, particularly Yahtzee. I might try to introduce my staff to some new games soon.

5. Polymer clay, of course. Today, I put the unicorn I mentioned on Monday into the oven. No picture yet, but I did finally photograph the polymer clay ladybug and octopus I created several weeks ago. Here’s the ladybug. I did the main parts using black Fimo, used Premo in the color cadmium red for its scale or wings or whatever the dots are on, and used white Premo for its eyes.

Polymer Clay Ladybug

6. Listening to podcasts. I have been searching for podcasts I might enjoy. For some years, I subscribed mainly to true crime and Christian podcasts, but I’m no longer a believer and true crime honestly doesn’t really speak to me either. Now, I mostly listen to podcasts on healing from trauma, the enneagram and related topics. I also found several on neurodiversity. I particularly loved the SquarePeg podcast.

In addition to these, I love listening to bedtime stories for kids on both podcasts and YouTube. I might someday try sleep stories for adults too, but don’t really see a reason for it as of yet, other than the fact that I’m an adult, that is.

7. Creative writing. This is something I really need to do more often, be it on the blog or in my Day One journal on my iPhone. I really enjoy trying my hand at writing based on prompts or trying different styles of writing. I am not a good creative writer at all, but practice makes perfect, right?

I am linking this post to #WWandPics.