Finding My Way #31Days2022

Posted on by Astrid

Hi everyone. The first optional prompt for #31Days2022 is “way”. I thought of several titles for this blog post, but ultimately decided on this one. The rest just randomly flowed out of my fingers.

Only four days before I move to the new care home. I told my mother about it on Tuesday. Somewhat surprisingly, she didn’t react weird to the fact that I’m going to live on institution grounds. Not surprisingly, she did start talking to me about how I might be able to walk around grounds independently then.

I did, indeed, mention to the support coordinator and behavior specialist for the new home, when they came to assess my suitability for the home, that I may want to learn to take a little walk myself on institution grounds someday. Afterwards, my current assigned staff cautioned them against too high expectations. After all, I want to be “normal” pretty badly, but I still remain multiply-disabled in some significant ways.

I know that people who are “just” blind can learn to find their way around institution grounds quite easily. But I’m not “just” blind. For one thing, I am not even sure I could use my white cane in a manner that would allow me to detect obstacles safely, given my mild mobility impairment due to cerebral palsy. For another, due to autism-related executive dysfunction and other factors, my energy level varies greatly from one day to the next. So does my capacity to handle sensory stimuli. Consequently, I may be able to find my way for a short walk around grounds pretty easily one day and get hopelessly lost and frustrated the next.

I remember back when I was in the psych hospital, I voiced a similar wish to learn to take a quick walk around the building. An orientation and mobility instructor from the blindness agency came by, taught me a few times with very limited success. Before she was even finished teaching me, the staff decided it was my responsibility, so no matter my mental state, if I left the ward (even in a meltdown), no staff would come after me. I was then supposed to take my little walk, despite the fact that, in a meltdown, I wouldn’t remember where to go at all.

I know at least here in the Netherlands staff can’t legally restrain you once you’ve left an open ward, but that wasn’t the point, since I didn’t need restraining. Their point was that I was now somehow capable enough to find my way by myself and, if I wasn’t, it wasn’t their problem. This at one point led to my husband needing to drive over from the next town to take me back to the ward.

In a sense, I should know the new care home isn’t like the psych hospital, but I keep getting flashbacks. All I can hope for is that my current staff will do a proper handover.

Joy in September

Posted on by Astrid

Hi everyone. How is it the end of September already? I pretty much forgot the month is almost over, but since it is, it’s time for me to write an update on my word of the year: “JOY”. I am linking up with Lisa’s One Word linky. I am also joining the Word of the Year linky.

September started out with good news, as, on the very first day of the month, I heard that I was first on the waiting list for what I now refer to as the prospective new care home. This gave me some renewed energy, but also stress. I was warned that the wait might still be six months or so. “That’s super quick,” my husband said. Well, those who’ve read my blog over the past couple of weeks, know that it’s gone even quicker: tomorrow, I am to decide whether I want to move to the home and, if I want to (which I do), I’ll move next Wednesday, October 5.

Considering this, the whole month of September flew by in a bit of a haze, in which I was both hyper with excitement and overwhelmed with worry. I am still both as I type this post, in fact. Consequently, I hardly found any clear moments of joy that were just that. After all, things I did feel delight or joy over, were also laden with some level of anxiety or anticipation. For example, at my husband’s and my visit to Ikea, I was thinking about what to buy for the new home.

The month of September, of course, was also the month my iPhone and Apple Watch got their updates and I got really used to my Apple Watch. For the first few weeks of the month, I was compulsively moving to get far beyond my activity goals. This past Friday, my dietitian did caution me against it. The next day, with some emotional struggle, I let a day go by when I didn’t fill all my rings. That seems to have broken the cycle, as I’m now able to be a bit easier on myself. For example, yesterday I was sick to my stomach all day, so really didn’t feel like exercising. I am relieved I am able to permit myself these days now too.

For the month of October, I am of course looking forward to enjoying real food, as the staff at the new home cook homemade meals everyday there. I am also hoping to enjoy visits from family, as I have a few planned already for the first week at my new home. Other than that, I am expecting to have a lot of getting used to at the new home, so I’m just hoping to enjoy some everyday pleasures.

My Bedtime Routine

Posted on by Astrid

Hi everyone. I’m feeling a little stressed out and, as it is past 9PM as I’m starting to write this post, I thought I’d share about my bedtime routine in order to get myself comfy and relaxed for bed.

Usually, the staff come by my room at around 9:45PM to help me get ready for bed, like get into my pajamas and brush my teeth. I usually leave my socks on, as I’ll often want to stay up a little longer. The evening shift here at my current care home ends at 10:30PM, so the staff usually say goodbye then too and turn off my light. In the care home I may move to on October 5, the evening shift ends at 10PM, so I may want to move my bedtime back a little.

I can go into bed by myself, but sometimes I want the staff to stand by while I go into bed. I will pull off my socks. Then, I’ll grab my iPhone if it’s sufficiently charged and select a Spotify playlist to play on my music pillow. The music pillow is connected to my iPhone via its lightning port (and a lightning-to-audio converter). I love the Harp Lullabies playlist, the Guitar Lullabies playlist or some albums by Robbins Island Music Group or Dan Gibson’s Solitudes. I most commonly set the sleep timer for an hour.

I sometimes will have an essential oil blend in my diffuser too. Some aren’t very suited to sleeping, but I know of a number of relaxing essential oil blends, four of which I shared before.

I have a weighted blanket, which I pull up over me almost till my chin. I also will grab ahold of one of my soft toys. Sometimes, I’ll lay the tail of the lemur over my chest, while at other times, I’ll hold the dolphin or unicorn.

Sometimes, I need to shift my sleeping position. I can sleep in every position except on my right side, but my preference will vary. Once I’ve found a comfortable position, I’ll likely doze off pretty quickly.

The night staff does come by at around 11:30PM to check on me. This is mostly to prevent me sitting up all night without anyone noticing. I can also press the call button if I can’t sleep, but of course other than try to comfort me, there is little the night staff can do. That being said, I sleep a lot better now that I have the weighted blanket, music pillow and essential oil diffuser than before I had all these.

loopyloulaura

My Ideal Ways of Spending My Day

Posted on by Astrid

Hi everyone. I have been thinking about ways in which I would like to spend my days if I get to move to the main institution. Like I said yesterday, each client has their own day program, so they aren’t required to go to the day center by default. I also will keep my one-on-one support at least until December of 2023. In today’s post, I want to share my ideal ways of spending my days. These are things I might be able to implement should I remain here, but I’m dreaming big here and thinking of ways the institution could accommodate me too.

First, I would like to start my day in my room like I currently do. I don’t think I can handle eating breakfast in a group as of yet. That might change in the future. I would like to eat all my main meals in my room, but go to the living room for coffee breaks when I want to.

Ways I would like to spend my day, include crafting of course. I would really like to keep on doing my polymer clay work and maybe even sell it in the day center’s shop.

The day activities I am thinking the institution could help me meet my dreams with, are those related to sports and physical activity. I know the institution has a small swimming pool on grounds and I’d really like to use it. I’m not sure whether they might have exercise equipment too, like the type of equipment you’d find in a gym. If they do, I’d love to utilize that too.

The institution is in a rural estate area, so I’d love to go for walks on grounds. I’ll take my iPhone (by then, I might have a new one, who knows?) to take pictures of the beautiful nature.

I’ll hopefully at some point be able to take short walks on grounds on my own too. For that, I’ll need orientation and mobility training from the blindness agency, but I’m sure I can get that.

I may occasionally want to relax in a snoezelen® room. Then again, if I’m correct, I can keep my weighted blanket if I move within this care agency, so I might not even need a snoezelen® room.

I’ll probably also want to go to a day center every once in a while to socialize with other clients. The institution has three day centers I believe, but I’m pretty sure clients from the home I might go to won’t go to all three. That’s okay though, I’ll find out what suits me.

Early Memories of Physical Activity

Posted on by Astrid

A few months ago, I read on another blog about Carrie Underwood’s book Find Your Path: Honor Your Body, Fuel Your Soul, and Get Strong with the Fit52 Life. One of the aspects that immediately appealed to me in the book, are the journal prompts. Yes, duh, you know, I’m a sucker for journal prompts. However, Carrie Underwood’s journaling prompts are not just random one-liners, they’re deep questions. One of them is about early memories of physical activity. Today, I want to share my thoughts on this.

As a young child, I loved playing outside. I used to build sandcastles in the wooden sandpit my father had built, not even caring that the wood hadn’t been treated so it got moldy every once in a while. I remember telling you all the story of how my father used to call my Kindergarten friend, whose last name translates to Peat in English, “Kim Mud”.

When I got older, I loved learning to rollerskate. I remember joining an informal neighborhood rollerskating “club” led by the oldest of two girls who lived next door. She was my age and could rollerskate real good or so we all thought. I wasn’t nearly as good or even as good as my own younger sister, but who cared? I didn’t.

I got a large tricycle when I was about seven or eight because I couldn’t ride a bike due to my cerebral palsy. Not that I could safely ride a bike, given my visual impairment, but apparently the rehabilitation physician had no idea. I occasionally rode my tricycle, but preferred to walk around the neighborhood.

However, by age seven or eight, when I started to lose my vision, my physical activity level also started to decrease. I am pretty sure it’s more than just my vision though, but there’s no way to prove this as my parents stopped taking me to specialists around that age. I am considering asking my GP or the intellectual disability physician at the care facility for a referral back to rehabilitation medicine, because I want to learn to make the most use of the mobility I do have.

I did till my mid-teens love to sit on the swings. I’m not sure that counts, as it is a sedentary activity, but you do move your legs pushing yourself. I would go on the swings for hours on end. Now though, I get dizzy even going on the swings for five minutes at a time.

A thing I also did from toddlerhood until I moved out of my parental home at age nineteen, was this crawling-in-place movement while in bed. By the time I hit adolescence, my parents complained that I ruined the bed and made too much noise, but I continued to move in this way exactly until I moved to the independence training home. I could do this for hours on end too and I now realize it’s probably a form of autistic stimming.

Overall, I wasn’t physically active in most of the traditional ways. I wasn’t in sports as a child and P.E. was one of my least favorite classes. However, I can’t say I sat on my butt all the time. I didn’t even as an adolescent, though I probably was more sedentary then than I should have been.

How about you? Were you physically active as a child?

Joy in August

Posted on by Astrid

Hi all. It’s the end of the month once again and this means I’m reflecting on my word of the year, which is “JOY”. I am linking up with the Word of the Year linky as well as with Lisa’s One Word linky.

The month of July was hard and it ended on an even more difficult note with a health scare. Did I even tell you all about it? Well, I had bloodwork done at the end of July as part of my annual health screening and, while most results came back normal, my EGFR, an indication of kidney function, did not. It’s supposed to be above 90 in healthy adults, had been 81 last year and my nurse practitioner back then had said that anything above 70 was still acceptable. Well, it was 68 this time around. I checked with my GP and he said this could be a one-off lower score, but I do need to be checked again, including a urine test, in a few months.

This health scare, as well as some other worries about my health, did decrease my joy over the month of August. However, I still tried to find moments of joy in the everyday. Like in July, I did sometimes seek joy in material things, for example when I bought a lot of polymer clay supplies a few weeks ago.

However, I also found joy in experiences, such as my and my husband’s trip to Enkhuizen last week and my trip to the town fair yesterday (even though I didn’t buy anything).

Earlier this week, I of course tried to find joy in another material thing by buying an Apple Watch. It’s pure delight seeing how I reach and even exceed my goals. That being said, I did have another health scare today, when the stupid thing told me my cardio fitness level is low. “Low” is the lowest score your Apple Watch will give you. My husband joked: “except for ‘dead’, but that’s not far off.” Great, huh? Thankfully, I do know I can to a degree increase my cardio fitness level by exercising. It is good to feel some sense of control.

How I Was Disciplined As a Child

Posted on by Astrid

Hi everyone. Today’s topic for Throwback Thursday is “rules and discipline”. I am going to try to keep this post as non-triggering as possible, but if you endured childhood abuse, you might want to skip this post. Then again, maybe what I endured wasn’t abuse at all? Well, in that case actual survivors might want to skip it because it might come across as invalidating.

My parents rarely set clear rules when I was a child or teen. I can’t remember having curfews and, even at ten-years-old, I was allowed to stay awake in my room for as long as I wanted provided I didn’t wake anybody else.

In this sense, none of the provided questions in Maggie’s original post made much sense. I mean, I was often sent to my room as punishment, but I cannot remember what for. I also was never told how long to stay in my room, so I usually stayed for about an hour then slowly re-emerged.

My parents, both of them, also used corporal punishment. However, I get a feeling that they hit me more out of a sense of powerlessness than out of a righteous wish to set me straight. Unfortunately, corporal punishment didn’t stop when I got older. In fact, the last time I was hit, was when my parents more or less kicked me out of the house when I was nineteen. And then I don’t include the time my mother tried to slap away my hand from my hair to prevent me twirling it when I was 23 but I slapped her hand away.

My parents, like I said, didn’t have clear-cut rules, but they did have expectations about socially appropriate behavior. They had their own words for ridiculing me when I “misbehaved”.

The positive side of there not being many clear rules, was that my parents encouraged me to do things most other teens, and certainly disabled teens, would not have been allowed to. I was allowed on a four-week-long summer camp to Russia at age fourteen, being the youngest of the Dutch participants and the only one with a disability (the program officially catered towards the visually impaired). Then again, when I struggled socially in Russia and for this reason wasn’t allowed back the next year, my parents, especially my father, completely guilt-tripped me rather than showing me support.

I was mostly a rule-follower, insofar as there were rules at all. However, as a teen, I became secretive. I actually had my father drive me to a meeting of people with mental illness when I was seventeen, while I’d led him to believe it was a disability meeting (because one of the people there was in a wheelchair). I’m pretty sure he knew, but he never confronted me.

I don’t have children of my own, so I cannot say whether my upbringing influenced the way I discipline them. However, I did find I got easily triggered when I got the impression my sister and brother-in-law used corporal punishment on my older niece (this was before the younger one was born). Thankfully, they were able to reassure me that they didn’t.

Joy in July

Posted on by Astrid

Hi everyone. It’s nearly the end of the month and this means it’s time for me to update you all on my word of the year. As usual, I’m joining the #WOTY linky, as well as Lisa’s One Word linky. My word of the year, as I’ve said before, is “JOY”.

Early in the month, I had a horrible setback, as I got the news that my now former assigned staff would be quitting her job at my care facility. This caused some major sadness and emotional turmoil in me, but after a while, I was able to channel it into something good by creating something for her – a polymer clay hedgehog. I enjoyed the creative process and the smile I brought to her face when I gave her the gift.

Overall, I did find that my joy or lack thereof was more than in the previous months tied to my material success, in the sense that, if I felt I was failing at a crafty endeavor, I didn’t enjoy it either. The same goes for my blog: I was ecstatic when reading all the positive comments to the poem I wrote last week, but didn’t enjoy writing when I had the idea that I wasn’t “successful” in my blogging.

Similarly, my joy is also more tied to material possessions than it used to be. For example, the day my former assigned staff left, I ordered a stuffed dolphin for comfort. While this did help me, maybe at other times I would’ve been able to seek joy without having to spend money. I am not saying spending money on comfort items is necessarily bad, but ultimately, they aren’t material things that will bring me joy.

Joyful experiences included a visit to the trampoline on the last day my now former assigned staff worked my one-on-one shift, eating out with my husband and a visit from my sister and her family. While they involved material things too, in the sense that we spent money on the dinner and my sister gave me some beautiful belated birthday gifts, the experiences themselves were truly great.

In some good news, I did do some Bible reading everyday again this week, while I’d hardly done any over the rest of the month. It is causing me a lot of emotions.

Overall, the month of July was filled with some high peaks but a lot of deep lows too. I must say though that, considering the impact of my staff leaving, I was expecting much worse. I really hope the month of August will be better.

My First Date

Posted on by Astrid

Hi everyone. Today’s topic for Throwback Thursday is first dates. Since my now husband was the only person I ever actually dated, I’m going to share my experiences about meeting him.

As regular readers might know, we met on a message forum. More specifically, he met me there, because I barely knew him by the time he private messaged me. He, on the other hand, had read most of my posts on the forum, as well as my blog.

I wrote on there, for all forum members to see, that I was feeling lonely living on my own in my student apartment in Nijmegen. At the time, he had decided he wanted to expand his circle of acquaintances. Neither of us were really looking for love, so in that sense, maybe it wasn’t actually a date.

He PM’d me asking to have a cup of coffee or tea somewhere in Nijmegen. I agreed, then backtracked, fearing he was a “creep in his fifties”, as I worded it. You see, I had barely read his introductory post. He invited me to the forum meeting in Utrecht where, according to him, at least fifteen other forum members could vouch for him that he didn’t appear creepy and was nowhere near fifty. He was eighteen at the time and I was twenty-one.

Looking back, I still took an enormous risk, as I never went to that Utrecht meeting. I did tell my support worker where I’d be meeting him, but, me being an adult, I didn’t have a curfew or anything.

I can’t remember whether I was stressed beforehand. During our meeting up, I certainly was. I can’t remember who paid for my coffee and his tea, probably him. As I’ve mentioned before when discussing this first “date”, I tripped over some steps in the cafe, spilling my coffee. I screamed in frustration.

As for who did the talking and who did the listening, neither of us talked much. He asked me about my taste in music, to which I replied vaguely that I like world music. I honestly wouldn’t have a clue how to respond now either, as I’m not really that much into music.

This “date”, to be honest, was quite the disaster, but he had it in his mind that, if he tried to meet me another time, we’d have many more dates. And we did. We got married exactly four years after this date.

My Safe Space

Posted on by Astrid

A few months ago, my former behavior specialist introduced a kind of visualization exercise to me called something like “A safe space” It doesn’t necessarily involve just visualizations though. Rather, the idea is to imagine your safe space, real or imaginary, in as much detail as you can. For today’s blog post, I’m going to describe mine.

I am in a kind of artificial forest surrounded by trees. The ground, however, is smooth, so that I can walk on it. When I want to rest, I can sit on a soft, cushioned bench in the forest. It feels like moss, but smoother and velveter. I can pull a weighted blanket over me when I want to fully relax. Of course, it’s always comfortably warm here.

I smell the scent of various plants and trees in the forest, such as lavender, sweet orange, pine, etc. They vary with the time of day or week and with the seasons, creating ever-changing combinations of aromas.

There are, of course, unicorns in the forest. The unicorns have all kinds of colors and sparkly or shimmery or glow-in-the-dark mane, creating a beautiful sight. Since my safe space is imaginary, I can see well enough to actually perceive these colors and sparkles and everything. When I feel like it, I can ride one of the unicorns. I can also cuddle with the colts and fillies. The unicorns comfort me.

There’s water in my safe space too. It has all the pros of a swimming pool (the cleanliness, smooth surface to stand on at the shallow end, etc.) but is still natural in a way. There are dolphins in the water that I can do dolphin therapy with.

I hear calm harp music and birdsong in the background when I’m in my safe space. Sometimes, the birdsong is replaced by dolphin sounds.

All combined, the unicorns and dolphins with the music, scents, and comfortable feel of the weighted blanket, will calm me.

Of course, aside from the real dolphins and the unicorns, everything I have in my imaginary safe space, I either have in my real room at the care facility or could somehow create elsewhere. I mean, I have a weighted blanket, an essential oil diffuser, a music pillow and a Spotify account to create the soothing music. The staff also offered to take me swimming once in a while again and I could obviously find a real forest (though that does not have the smooth ground to stand on). I can still imagine many colors in my mind, so this visualization exercise may help me create the colorful experience of the unicorns I described above. In truth, though merely imagining a safe space isn’t necessarily going to make me feel any calmer, it does get me closer to realizing the things I have right here in order to create it.

loopyloulaura