Finding My Way #31Days2022

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.

A Rather Frustrating Monday

It’s past 10:30PM and I’m still wide awake. I just took a PRN quetiapine. My Apple Watch and the staff’s blood pressure cuff are telling me I should be super relaxed, in that my heartrate is 67 even when sitting upright. That’s rather low for me, but not worryingly low or so the staff say. Oh yes, I know normal resting heartrate is between 60 and 100, but mine is usually closer to 100. Oh well.

Today was quite intense, honestly. In the morning, the manager came by to talk to me about my meeting with the behavior specialist last week. She also, of course, told me a new staff would be starting his orienting shifts here and he’d start right this evening. Of course, like all new staff who’ve been hired over the past six months, the first part of the home he’s being introduced to is mine. Can you read my sarcasm? Well, it should be there. I’m rather annoyed at the fact that every new staff starts working on my side of the home rather than the other one. I know it’s probably because one of the clients on the other side gets really irritable when introduced to new staff. Well, maybe I need to show a little more of my irritable side.

Then, the temping agency housekeeper came to clean my room. She left my bathroom in a horribly wet state and left the tap on its hottest setting. Thankfully, that setting is not hot enough to actually cause burns, but it did hurt a little when I tried to wash my hands.

Once my day activities started, I went for a walk. My cardio fitness level was once again low, but it hardly bothers me anymore.

In the afternoon, my staff and I drove into town so I could buy a new pair of shorts for when I go on the elliptical or ride the side-by-side bike. The old pair pretty much falls off my butt. I also bought socks and some presents for my oldest niece, who will be three on Saturday.

In the evening, I went for a short walk with the new student staff, taking his camera and tripod with us to snap some pictures. I cannot yet show them, as I haven’t yet figured out which ones show what.

Then, I wanted to go on the side-by-side bike again, but got really frustrated trying to fasten the belts around my feet. They need to be really tight or my feet, particularly my spastic left foot, will fall off the pedals. That didn’t work out and I got really overloaded, so had a short meltdown.

Later in the evening, when I was alone, I started fretting about my health. That probably caused me to feel spacey. Now that I’ve processed all this in this post, I feel slightly better. It might be the quetiapine is working as well.

Early Memories of Physical Activity

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?

#WeekendCoffeeShare (April 10, 2022)

Hi everyone! I’m joining #WeekendCoffeeShare today. I just had a soft drink and a glass of water, but if you’d like a cup of coffee or tea, I’m pretty sure my staff can make you one too. Let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that a fellow client passed away on Wednesday. He had had COVID back in February, like most of us, but he didn’t fully recover. This client had been hospitalized several times during December and January because of seizures, but these finally seemed to be well under control. Unfortunately, COVID was the last straw. He had been on a feeding pump ever since he’d had COVID, but because he became increasingly uncomfortable and unresponsive, the doctor and staff decided to discontinue his feedings on Monday. I last saw him alive Monday evening. He actually lifted up his body, smiled and squealed with delight upon hearing my voice. I made the conscious decision, having already been informed that he’d be dying soon, to keep this memory as my last memory of him while alive.

If we were having coffee, I’d share that I finally managed to craft another butterfly with the silicone mold I’d gotten for Christmas last December. I badly wanted to create a butterfly to go with the fellow client’s coffin, but wasn’t sure whether I could use the mold. However, other tutorials seemed even more complicated, so I eventually decided to give it a try. I did the wings in Fimo Effect color blue ice quartz. The body is pacific blue and the antennae are black.

If we were having coffee, I would also tell you that I have finally given in to the polymer clay color mixing thing and bought a precision kitchen scale. That plus a collection of 60 Fimo soft color recipes. Of course, I haven’t tried Fimo professional yet, but if I have to believe my staff, the colors I’ve mixed so far turn out gorgeous despite not being done with the true primary colors.

If we were having coffee, I’d tell you about the nationwide cerebral palsy day I went to yesterday. Of course, because the ParaTransit taxi had arrived at 8AM and we didn’t have to pick up any other passengers along the way, I was in Apeldoorn, where the day would be held, by 9AM. Thankfully, I had called my mother-in-law when I entered the taxi and she’d made sure to be there on time too.

The day started with a live-streamed lecture by Erik Scherder, a neuroscientist from Amsterdam. The message was quite similar to the one he’d conveyed in 2018 when I’d attended the cerebral palsy day too: that exerting yourself physically is needed to stimulate your overall neurological wellbeing. In 2018, the lecture had mostly been geared towards (young) adults, while yesterday it was more focused on children and their parents.

I attended two workshops during the day. One was on aging with cerebral palsy, mostly geared towards those age 40+, so I was a little outside of the scope, but I could relate (sad as it may be) to some of the increasing discomfort that older adults with CP face. The other was a yoga class.

As regular readers of my blog might know, I am not 100% sure I even have cerebral palsy, in that my parents never told me and, by the time I was an adult, things got so overshadowed with other diagnoses it’s unclear. For this reason, I felt validated knowing that I appeared not to be the most mildly affected person, strange as this may seem. In fact, during the yoga class, we had to loosen up our muscles and my mother-in-law told me to loosen up. Someone else half-joked: “That’s about the hardest thing to tell a spastic.” That made me feel good.

How have you been?

#WeekendCoffeeShare (April 2, 2022)

Hi everyone on this cold Saturday evening. I am joining #WeekendCoffeeShare today. I’m afraid I just have water or maybe the staff has put some soft drinks in the fridge by now. My favorite soft drink, Dubbelfrisss, wasn’t cold when I had my evening drink about an hour ago. Anyway, let’s have a chat.

If we were having coffee, I’d tell you that I finally have been crafting again today after a week of just watching crafty videos and doing nothing creative at all. That is, I’ve been blogging, which counts too, of course, but I haven’t touched my polymer clay or jewelry-making supplies or macrame cords or anything.

Today, I finally did a couple of pieces for the mobile for the baby my sister is expecting. I also finished the polymer clay hedgehog I’d started on about a month ago. At first, I was disappointed, because I’d used up all of a particular color for its body and now it was nowhere to be found, so I couldn’t do the ears in the same color. Turns out real hedgehogs also have slightly differently colored ears than their bodies. Besides, I never really meant to be doing a fully realistic sculpture anyway (I can’t).

If we were having coffee, I’d share that the rest of the week was quite meh. I’ve been having tons of plans in my head, but no ability to actually put them into action. Today, I also experienced a ton of flashbacks and internal chaos. Seriously, the discrepancy between my intellectual ability and my emotional immaturity is really getting at me. I find that I can intellectually think of a lot of things that emotionally I cannot handle at all. I’m not sure if this makes sense.

If we were having coffee, I’d tell you that I may want to research an autism support method by Colette de Bruin. My assigned home support staff pointed it out to me and said she’s pretty much using the method on me already, but I may benefit from learning about it myself.

If we were having coffee, I’d share that I am very happy with the latest iOS update. I finally was able to do some reading again on my iPhone yesterday, since the update fixed a bug that caused my Braille display to become pretty unresponsive. I usually read with just my Braille display, as I don’t like VoiceOver’s synthetic speech for that.

If we were having coffee, lastly I’d tell you that I have a quiet weekend, because my husband isn’t coming over and I have no other plans. Next week though is going to be busy, especially the weekend. I am going to the nationwide cerebral palsy day with my mother-in-law. I will be attending a workshop on aging with CP in the morning, which I am really looking forward to. In the afternoon, I’ll be attending a yoga class. I may not be able to write a coffee share post then, especially since I’m also supposed to stay up-to-date with the #AtoZChallenge. I’ll be certain to write about it though.

How have you been?

A Sunday With the Theme of Self-Esteem

Hi all. The past 24 hours have truly been a mixed bag of emotions. I started obsessing over wanting to start another new craft. Yes, another! Somehow, I decided on macrame and got all obsessed about learning its techniques before even having any cords. Then I decided to ask in a Facebook group whether you need to be coordinated in both hands in order to be able to do macrame. The first commenter basically said not only that, but you also most likely won’t be able to feel your way around the knots.

This was late last night, past midnight actually. I went to bed feeling awful about myself. After all, the reason I wanted a new craft is not that there’s nothing more to learn about polymer clay, but that I’m somehow convinced that I’ve reached my full potential.

By morning, I found that other people had been more encouraging of me trying macrame or even card making. You know, remember I’d said I tried that back in 2013? These people said so what if my work doesn’t look good, if I enjoyed the craft. That’s not entirely my kind of attitude, since I do want to be able to share what I make here or on my personal Facebook page at least without feeling like I have to be ashamed of myself.

I have been trying to work on some polymer clay projects in progress again later today by sanding some beads and charms. It felt kind of okay. I also watched some more YouTube videos on polymer clay, but they made me feel like I’ll be taking forever to understand the concepts. Then again, this is even more the case if I start another craft entirely. Guess I’ll just stick with polymer clay and try to be more patient with myself.

As a side note, one person did say that, if I can tie my shoelaces, I can do macrame. That kind of discouraged me at first, since I can’t tie my shoes. Make that couldn’t. At least, after three tries, I was successful at tying my shoelaces while my shoes were in front of me on the table. Then I tried several more times, more or less successfully. I don’t think I want to really be able to tie my own shoes, but it was an interesting boost to my self-confidence.

#WeekendCoffeeShare (November 6, 2021)

Hi everyone on this gloomy fall day. I’m joining #WeekendCoffeeShare. Unlike most days when I write my coffee share post, I haven’t had my last cup of coffee yet. Let’s have a drink and let’s catch up.

If we were having coffee, I’d say that my GP appointment on Monday went okay. My magnesium got decreased in hopes of relieving me a little from my abdominal discomfort. It’s helping a tiny bit, but not enough for my liking.

If we were having coffee, I would tell you that I had an okay week otherwise. I’m struggling quite a bit with the disconnect between my intellect and my emotions. This is causing me to appear well-collected a lot of the time when in reality I feel extremely distressed. I discussed a few examples of this with my assigned staff and support coordinator today and they’re helping me improve these situations.

If we were having coffee, I would share that I finally gave in (or up) with respect to the adaptive footwear situation and had my husband order new walking shoes for me. After all, the old ones will probably have a large enough to get my socks wet hole in them within a week or two at most. I am so grateful my husband found almost the exact same shoes. They arrived in the post today. I am still hoping I will eventually get used to my orthopedic footwear, but it will need some further adjustments for that to happen first.

If we were having coffee, I would share that I am looking forward but also stressing about the national cerebral palsy day in three weeks’ time. I went to the event on my own three years ago, but this is quite hard this time. I can’t afford for a staff member to go with me to the entire event even with my one-on-one being covered by the care facility. After all, I have one-on-one only part of the day and would need to pay like €45 an hour for individual support for the rest of the day. I might go on my own after all, or I might skip the event, like I skipped the online regional meeting today. I was seriously planning on going to that one, but just couldn’t get myself to do it after all.

If we were having coffee, lastly I’d proudly announce that I’m going to be an aunt again in May. I’m pretty sure my sister is fine with me sharing this on my blog now that she’s past three months and all tests so far are fine. My sister’s other child, my niece, is also doing well. I shared a few months back that she was diagnosed with hip dysplasia. She had surgery in September and is currently wearing some type of cast. We are all hopeful that once this will be removed in a month or so and once she’s relearned to walk after that, she’ll be completely fine.

How have you been?

Why Do I Need One-on-One Support? #31Days2021 #Blogtober21

Yay, it’s October and this means it’s time for Blogtober 2021. Last year, the prompts were based on song titles. This year, there are no prompts. However, Kate Motaung of Five Minute Friday also relaunched the 31-day writing challenge after a break last year and there are prompts for this year. The first prompt is “need”. We can do a five-minute freewrite, but I’m no good at sticking to five minutes or at not editing my writing.

Yesterday I had my care plan review. I was really concerned about my need for one-on-one support being reassessed later this year. Not that the care plan review would really matter for this or so I’m told, but now that we were all together (my home and day center staff, the behavior specialist and my mother-in-law), I wanted to raise the issue. It’s the behavior specialist’s job to write the reapplication paperwork and I questioned whether it sufficiently documented my need for one-on-one. To get things clear in my mind, I am going to write out why I need the support I need.

Firstly, I am blind and have a mild mobility impairment due to cerebral palsy. This, combined with my psychiatric illnesses, means I cannot move about outside the care home, or even outside of my room, independently much at all. This means that the staff need to be alerted when I leave my room looking for them, so that they can come out looking for me.

I am autistic. In my case, I get severely overloaded having to function in a group setting, such as at the day center. Even with noise-canceling headphones on, I still get distracted from trying to do things on my phone while there. Besides, if I do have functioning headphones, they will block out so much noise that I’m essentially cut off from my surroundings and can’t be alerted should something happen. This creates intense anxiety.

This anxiety also leads me to be unable to function on my own for long periods of time. I can, if I’m doing well, be left on my own in my room for up to about 30 minutes at a time. It doesn’t help that I know rationally that someone might be in the next room, because emotionally, if they’re out of earshot, they might as well be on the North Pole.

Autism also means I tend to fixate on routines. In my case, I tend to hyperfocus on the times my staff are going to leave me alone and this creates even more anxiety even when they’re still present. For this reason, staff need not stick to rigid rules of what time exactly they’re going to leave me, but rather to the order of activities.

If I’m left alone for prolonged periods of time, I can often feel incredibly unsafe and start to ruminate, which can easily escalate into self-destructive thoughts and actions. I may also run off in a fight-or-flight response.

I have complex PTSD, as well as dissociative symptoms. This means I can experience apparent age regressions. I get triggered very easily. Flashbacks, too, can lead to a fight-or-flight response.

Thankfully, now that I’m on the right medication, I don’t get as many flashbacks as before. However, I still do experience many serious behavioral issues that can be prevented or averted by the fact that I have one-on-one support most of the time.

I’m pretty sure a critical assessor would be countering that my one-on-one would not help me learn to cope with my anxiety. Thankfully, the goal of my long-term care plan is stabilization, not development. In other words, the original assessors for my long-term care funding did not feel I am trainable anymore. Otherwise, I would not have gotten approved for what is essentially lifelong care at all. The only thing is that my one-on-one care exceeds the care normally paid for by my long-term care profile. Oh well, let’s hope the assessor sees my need for it for at least another year.

#WeekendCoffeeShare (August 29, 2021)

Hi everyone, how are you? I’m a bit late joining #WeekendCoffeeShare, as it’s already Sunday. I just had my afternoon coffee and, like I said last week, my Senseo is with my husband now. Now I’m assuming he won’t use it much, as not only is he more of a freshly-brewed coffee person, but he’s trying to cut back on his caffeine intake. That’s his decision though. Let’s have a cup of coffee (or pretend to) and let’s catch up.

If we were having coffee, I’d share that I had a good week overall. The weather’s been okay. Not as warm as I’d like it and a little windy for my liking too, but at least it’s been mostly dry.

If we were having coffee, I would share that I decided not to join Steptember, the annual cerebral palsy fundraiser, this year. I participated last year, but the pressure of having to get in 10K steps each day (or as many as I could) and raise money, was a bit too much for me.

If we were having coffee, I’d also moan about my AFO. Yes, it’s been a while, but if you’d thought that no news is good news, you would be wrong. My AFO had been with the orthopedic instrument maker, whom I’ll call AFO guy, for a few weeks, but upon return, we found out that it’s still not working well in combination with my orthopedic shoes. Now AFO guy and shoe guy were both contacted by the physical therapist and it’s up to them to figure out how to solve the issue.

If we were having coffee, I’d also whine a little about my foot pain. The physical therapist hasn’t gotten back to me about that, so I’m not sure what’s causing it. Could be my shoes, since they’re really old (the non-adaptive ones I now wear). Please pray AFO guy and shoe guy will figure out the issue with my adaptive footwear soon.

If we were having coffee, I’d ask you to pray for my niece. I didn’t ask my sister permission to share her hip dysplasia diagnosis last time, which I think now is wrong, so I won’t be sharing any more details. However, she is definitely in need of continued prayers.

If we were having coffee, lastly I’d share that I’ve been really crafty over the past week again. I created some lovely polymer clay ornaments, as well as a hand cream and keychain for one of my fellow clients, who had his birthday on Wednesday. Yesterday, I encountered a lot of frustration with one of my Fimo Professional clays being very crumbly and hard. I eventually managed to restore it to health though.

How have you been?

#WeekendCoffeeShare (July 24, 2021)

Hi everyone on this late Saturday evening. I’m joining #WeekendCoffeeShare even though it’s rather late for coffee here at nearly 9PM. Besides, I had green tea this evening. I can of course still make you a Senseo, although with the amount of coffee stains in and on my coffee maker I wouldn’t recommend it. So I guess a glass of water or a soft drink should suffice. I hope that’s alright. Let’s have a drink and let’s catch up.

If we were having coffee, firstly I’d share that I’m so grateful the weather has been much milder over the past week than it was the week before. Of course, we here in Raalte weren’t personally affected by the floods either and damage control down in Limburg is still ongoing. However, the weather here has been truly beautiful.

If we were having coffee, I’d share that, thanks to the weather as well as my feet cooperating, I have been able to get in a lot of walking lately. I got in over 11K steps each day of the week so far.

I am still not sure I’ll sign up for Steptember, the annual fundraiser for the cerebral palsy charity this coming September. The aim is to raise funds while aiming for 10K steps each day, regardless of whether this is done while walking, wheeling, biking, etc. Last year, I did participate, but I didn’t really like the pressure I put onto myself by signing up.

If we were having coffee, I would tell you that I’ve been really crafty over the past week. I have been making some new bracelets. One of them, I sent to my mother. She received it in the post today and was happy with it.

I also picked up trying to do latch hooking again. This is a yarn craft for making rugs etc. I learned this at the blindness rehabilitation center back in 2005 and tried to pick it up again briefly in the psych hospital, but was too easily frustrated for it back then. So far, I am not 100% sure I understand the technique again yet, but I’m confident that ultimately I’ll learn.

If we were having coffee, I’d share that I’m truly grateful for all the comments on my blog over the past few days. It makes me feel so happy to see that others read and appreciate my writing.

If we were having coffee, lastly I would announce that tomorrow is my third blogiversary! That is, it’s the third anniversary of my having (re)started this blog. I say “re” because I used this domain (or the WordPress.com subdomain at least) back in 2011 too. I have been on WordPress for over fourteen years and have had an online diary ever since 2002. I still keep learning and growing everyday. I am so, so grateful that, contrary to what some “influencers” say, blogging isn’t dead at all. I hope it never dies.

How have you been?