Testing, Testing… In So Many Ways…

Posted on by Astrid

Hi everyone. Today I’m once again joining in with Esther’s writing prompt. The word this week is “test”. I could, like I’ve done so many times, rant about the use and misuse of testing in education and care. I mean, everyone who’s followed my blog for some time knows about the nearly thirty-year-old, horribly flawed IQ score still in my care plan today. However, I recently saw the housing profile that will be used in finding me a more suitable place and it thankfully never mentions my IQ.

There are, of course, many other meanings to the word “test”. It could refer to something new you’re trying. For example, today I cooked a cabbage and mashed potato dish. It was the first time I cooked something with mashed potatoes (or boiled potatoes in general, for that matter). When I mashed the cabbage/potato mixture, it sounded horribly soggy, so I almost threw out the entire pot. Thankfully, a staff convinced me to let it sit and see if I and/or my fellow residents would like it regardless. Turns out that, though the texture was too smooth for my liking, it wasn’t nearly as bad as I’d expected.

On Monday, I also took out my AirPods to test if they still worked. My best friend had cleaned them several months ago and I was too impatient to let them properly dry. Turns out my right earbud was ruined, though the left one still works. I have been using headphones ever since, but don’t particularly like the feel of headphones on my ears. I do have earbuds, but cannot use those to make phone calls.

This got me thinking of finally buying new AirPods. Browsing the Apple Store online sent me down a rabbit hole of thinking I might want to buy a Macbook again. I had one for about six months in 2019, but struggled to get used to it. The thing is though, I bought that one without researching it properly first because my previous Windows laptop had been near-dead for several months and health insurance wouldn’t pay for me to get JAWS for Windows. JAWS at the time didn’t have a subscription plan, so I’d have to pay like €1000 for just a screen reader. That didn’t make sense to me, so I spent this money on a new Macbook. Six months later, insurance changed its mind and I couldn’t wait to buy a Windows laptop again. I sold my Macbook to my then mother-in-law. Now that my Windows laptop is still working and, besides, I do get annual JAWS upgrades, I have more time to actually orient myself before making a choice.

My best friend was a bit worried when I mentioned the idea of buying a Macbook, because well she doesn’t want me to get overly stressed about it like I was in 2019. That being said, Windows has near-weekly updates that change things around, so I’m more used to adjusting to changes in my tech than I was back then. We’ll see where this goes…

A Good Mood

Posted on by Astrid

Hi all on this rainy Wednesday. I just found Esther’s writing prompt for this week, which is “mood”. Since I’m in a pretty good mood right now, it feels appropriate to write about it.

Yesterday, I had a meeting with my support coordinator and the behavior specialist who’s filling in while my home’s regular one is on maternity leave. As regular readers of my blog might know, we’re in the process of designing a new, activity-based day schedule for me. Initially, the draft didn’t appeal to me, because for one thing I’d wanted it to include time for me to have a cup of tea in the living room later in the evening. As those who’ve followed me for a long while will know, I introduced this cup of tea last summer and it helped me through a dark period. Of course, I’ve mentioned more than once that if a cup of tea is the only thing to lift my mood during a day or even week, that’s not really all that good. I mean, yes, it signifies that I’m not majorly depressed, but it isn’t particularly a sign of good quality of life.

My support coordinator yesterday told the behavior specialist about my daily positives and negatives, which I’ve been sending out to her and my assigned staff on a weekly basis. She mentioned that my positives usually include activities that have meaning for me, such as crafting, cooking, baking or the like. My negatives usually involve situations in which the staff don’t adequately support me based on my needs of that moment, such as when they place too much responsibility on me.

Yesterday, I for the first time in a while had a day in which I didn’t see any negatives. When I wrote in the Gratitude app in the evening, I even rated my mood as “good”. Not “great”, but I don’t expect to feel great. I usually rate my daily moods as “okay” at best.

I listed several positives yesterday too. One was my having made another batch of homemade granola. This takes only about half an hour total, but it significantly lifts my mood to make it.

Similarly, on Monday, we had twenty minutes left of my long activity time slot in the afternoon after having gone on a walk and having had coffee at the institution townhouse. My staff initially proposed we play a dice game, but I suggested we try making a simple bracelet. My staff questioned whether we’d have enough time to finish this, but I challenged her by saying we could at least try. Usually, I’m the one suffering from inertia because I fear we cannot finish an activity within my allocated time slot. That’s one reason I proposed doing a more activity-based day schedule, of course including approximate times for the activities. Anyway, guess what? We finished the bracelet on time!

Today, if nothing major happens to diminish my mood, I’ll also have a day with no negatives. This morning, I started off by feeling a bit stuck by fear of there not being time for an activity. Thankfully, I pulled myself through it and guess what? I made not just the one thing out of polymer clay I’d wanted to make, a rolling dice for a staff who’s leaving and with whom I used to play dice all the time. I also started on a project for a staff who’s just become a father. Of course, since the dice had to be painted, I didn’t finish it right then, but I did in the afternoon, just on time for the staff’s goodbye.

My support coordinator is definitely right that meaningful activities are what help me get in a good mood. Isn’t that normal though?

Mother As the Giving Tree: Reflections on Conditional Acceptance

Posted on by Astrid

Hi everyone. Last Monday, I attended an online meeting for adults who spent time in the NICU as infants. It touched me on many levels. One thing that was mentioned was the fact that most NICU parents go through their own emotional process, which then is passed on somehow to their child in the NICU and beyond. For example, many parents back in my day and before didn’t know whether their baby would survive, so they didn’t attach to their babies as they normally would have.

I was also reminded of something I read in the book The Emotionally Absent Mother. In it, motherhood is compared to the giving tree in Shel Sinverstein’s writing. I don’t think I’ve ever read this piece, but its point is that the tree keeps on giving and giving and expects nothing in return.

I have been thinking about my parents’ attitude to me as a multiply-disabled person. When I suffered a brain bleed in the NICU, my father questioned my neonatologist about my quality of life and what they were doing to me. “We’re keeping her alive,” the doctor bluntly replied. My father has always been adamant to me that he wouldn’t have wanted me if I’d had an intellectual disability, because “you can’t talk with those”.

I have always felt the pressure of conditional acceptance. I’ve shared this before, but when I was in Kindergarten or first grade, it was already made clear to me that, at age eighteen, i’d leave the house and go to university. I tell myself every parent has expectations and dreams for their child. This may be so, but most parents don’t abandon their children when these children don’t meet their expectations and certainly not when it’s inability, not unwillingness, that drives these children not to fulfill their parents’ dreams. Then again, my parents say it’s indeed unwillingness on my part.

I still question myself on this. Am I really unable to live on my own and go to university? My wife says yes, I am unable. Sometimes though, I wish it were within my power to make my parents be on my side. Then again, the boy in Shel Silverstein’s writing didn’t have to do anything to make the tree support him either.

I’m linking up with #WWWhimsy. I was also inspired to write this post when I saw Esther’s writing prompt for this week, which is “giving”.