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.

Riding the Train

Posted on by Astrid

Back when I still lived on my own in 2007, I would frequently ride the train. Or go to the train station planning to go on a train somewhere but melt down once at the platform. Then, people would often call the police.

I shared my experiences of riding the train, or wanting to do so, as an autistic and blind person on a public transportation users forum in 2008. I shared pretty much every little detail up till my crisis on November 2, which happened at a train station too. The person who had asked me to share, then pointed out that it might be a little TMI, but that’s how I am.

This piece was written for the Six Sentence Story blog hop, for which the prompt this week is “Train”.

A Very Intense Tuesday

Posted on by Astrid

Wowah, it’s been quite the day! I awoke at 8AM from a nightmare. Thankfully it wasn’t about my current care facility. I got weighed in. Thankfully, despite all the treats the staff who left us left behind, I’d only gained 200 grams.

I then got dressed, got breakfast and then read some. When my day activities staff came, she said the hairdresser was here. Like I said last week, hair salons are allowed to open again, though I overheard a staff say this isn’t until tomorrow. Oh well. I don’t go to the hairdresser each time she visits the care facility, so wasn’t sure I’d go this time, especially at such short notice. I eventually decided to go anyway and she cut about 5cm off my hair.

Then I went for a walk. Once back home, I had to eat, because I’d have to leave for the dentist at noon. I wouldn’t have my appt till 1PM, but it’s about a 45-minute drive to the care agency’s main institution, where the dentist is.

The staff had only told me of my dentist’s appt yesterday, presumably so I wouldn’t worry. I didn’t really, but my anxiety went through the roof once the dentist was doing his job, despite my having taken a PRN Seroquel to calm my nerves. It wasn’t noticeable to the staff, as I practically froze.

I had to have two cavities filled. Both were underneath an existing filling. Despite the topical anesthetic, it did hurt a little. To be honest, one of the teeth still hurts. I also got some protecctive layer over one of my other teeth, which had receding gums and for this reason the root had become exposed. That thankfully didn’t hurt.

Once I was back at the care facility, I tried to rest, but couldn’t. The anesthetic was wearing off and it hurt pretty bad. I decided to do some reading. Then the orthopedic shoemaker visited. He had tried to widen my shoes, so that my AFO (ankle foot orthosis) and arch support both fit into it and I would still be able to get my foot into the shoe. It worked, so now I can start practising walking with my AFO in. In fact, I’m pretty sure I won’t have to practise, as the discomfort is already manageable.

Once the shoemaker was gone, it was time to have dinner. I then had a bit of a meltdown over dessert, or maybe because of the reason it was just a spoiled tantrum. I eventually calmed down though and was able to enjoy the rest of the evening.

I finally gave in and got myself a membership to the International Association for Journal Writing (IAJW). I was a member some years ago, but at the time rarely used the member benefits. Part of the reason is that I didn’t know how to work Zoom and the get-togethers are on there. I still don’t know how to use it, but I think I’ll learn quickly enough.

Now it’s past 8:30PM. I’m not tired yet, but maybe I should have an early night anyway. Tomorrow, my community psychiatric nurse will be here at 11AM. That should go okay. Overall, I’m doing pretty well.

A Favorite Childhood Gift

Posted on by Astrid

One of Mama Kat’s Writer’s Workshop prompts is to share about a favorite Christmas gift you received as a child. Here in the Netherlands though, Christmas isn’t that popular for gift-giving. Instead, we celebrate St. Nicholas on December 5. I can’t remember that many gifts I received for St. Nicholas and the entire celebration was one big stressor once I no longer believed in St. Nick. We celebrated it until I was 20 in 2006. Then in 2007 I was in the psych hospital and my parents didn’t want to risk inviting me. That’s how the tradition ended.

The other major gift-receiving opportunity was and still is, of course, my birthday. It is on June 27, so pretty much as far from Christmas as you get it. Still, I’m going to share about a favorite gift I received for my birthday as a child. Mama Kat twisted the prompt too by listing several things, so oh well.

I can’t remember whether I had invited anyone to a birthday party when I turned eleven. After all, I was pretty much friendless at the time. However, I did celebrate it with my family. The main gift I remember getting was a Barbie doll with aerobic attire. I named her Teresa. I loved the doll, even though I knew already that eleven was a little old to play with it.

Later that summer, my mother took me on a “mother-daughter walk”, which was mainly an opportunity for her to tell me the school had recommended I go residential there. She claimed the reason was that I had behavior problems, which she attributed to my having too many toys. I can’t follow that train of thought other than through some idea that I was so spoiled I somehow felt entitled to have tantrums. That wasn’t true, for clarity’s sake. In any case, my mother regretted having given me the Barbie doll.

I cherished Teresa even more from that moment on. When, during the following school year, I’d have a meltdown, my mother would often pack a random number of toys and claim to throw them out. (In reality, she hid them in her room downstairs.)

The followign year, when I turned twelve, I felt so ashamed for still playing with Barbie dolls that I claimed they’d aged with me, so it was okay. Most of the dolls are still with my parents, I think. I think at one point I broke Teresa’s leg though and had to actually throw her out.

Mama’s Losin’ It

#WeekendCoffeeShare (November 8, 2020)

Posted on by Astrid

Hi all on this sunny Sunday! Okay, it’s past 9PM here and the sun has set already, but it was sunny during the day. I should really have taken a picture.

I just had my last drink for the day. However, the beauty of virtual coffee shares is that people can join in whenever they want. So grab a cup of coffee, green tea or water. I’m pretty sure there are also soft drinks in the fridge, but I rarely drink those now. Let’s have a drink and let’s catch up. As usual, I am linking up with #WeekendCoffeeShare.

If we were having coffee, I would tell you that this whole week, the weather has been beautiful. It was a little chilly some days, but not as cold as you might expect in November. In fact, today, I even took a walk with my husband without my coat on. I did of course wear a fleece vest. It was sunny and almost warm.

If we were having coffee, I would tell you that I canceled my sister’s visit for this week too. The reason this time is a combination of the stricter COVID-19 management rules and my husband wanting to celebrate his birthday with me this week-end. With respect to the former, for example, my sister could be visiting with her husband and daughter, but three adults are not allowed together outside. This would mean my brother-in-law wouldn’t be able to go on walks with me and my sister. As if the risk of contracting COVID is higher outside than inside.

Also, I wouldn’t be allowed to go to my husband’s after they visited. Or maybe strictly speaking I could, but it’d be against the spirit of the lockdown. My husband felt pressured by me to let my sister and family visit, but eventually it became clear he’d really like to have me over for the week-end to celebrate his birthday. His birthday is on the 12th, by the way. So since my husband’s birthday is more important than a random visit from my family, we’re going to reschedule that sometime after the worst of the lockdown has ended.

If we were having coffee, I’d share that I gave my husband an Airfryer for his birthday. He made us both thick fries in it yesterday. Even though I’m pretty sure he didn’t salt mine, or at least not as much as I’d have done, they were still delicious. My husband joked that we’d have vegan fries (duh!) but to make up for it, we would eat real hamburgers. They were great too.

If we were having coffee, lastly, I would tell you that I was in a bit of a crisis this evening again. I got majorly triggered by a staff raising her voice as she commanded me to go to my room. She had intended for me to seek the quiet of my room, because I was rapidly becoming overloaded with all that was going on with the other clients. Her wording that I’m not the only one (I’m pretty sure she didn’t say it that way, but that’s how I interpreted it) triggered me to feel that I wasn’t allowed to feel the way I did and was attention-seeking. This then quickly spiraled out of control. Thankfully in the end, I was able to talk it through with the staff and also write down my feelings. I did take a PRN lorazepam, but that’s totally okay.

What’s been going on with you lately?

In Crisis Yet Again #Blogtober20

Posted on by Astrid

Okay, this may not be the most appropriate post for #Blogtober20. After all, the prompt for today is “relax”. It is also World Mental Health Day. Most people would use this to advocate for better mental health services, or to share tips on coping with mental health issues. Tonight, I’m too stressed out to do either. In fact, this is just going to be a raw post on my having been in crisis tonight – and not having fully recovered yet as I write this, in fact.

I was on edge all day. By mid-morning, I started feeling irritable, but it was still manageable. When it was time for lunch, a different staff from the one assigned to my side of the home came to eat with us. We also didn’t get the usual weekend lunch stuff, such as sausages, pancakes or soup. We did get a baguette with cream cheese on it. It was okay. IN fact, I much prefer that to our weekday lunches. I don’t think it’s even the fact that I didn’t get the treat I wanted, that set me off, but the fact that so much was different about the lunch. Thankfully, after being on the verge of a meltdown for a bit, I was able to calm down.

Then in the evening, I spiraled into crisis. I don’t even know why honestly. I was getting very irritable about the staff having the TV on even though the volume was turned to low. Within the next fifteen minutes or so, I landed in a full-blown meltdown that seemed to last forever. I eventually asked the staff to fetch me a PRN lorazepam, but then somehow got it into my mind to climb over the balcony railing. I didn’t, but the mere fact that I was standing on my balcony on bare feet in the rain and disclosed my thoughts, worried the staff.

I was near a staff all the time until I had to go to bed at 10:15PM because the evening staff were leaving. They did remove the knob on my balcony door, so that for now I cannot go on there. I gave them permission for this, for clarity’s sake.

The lorazepam has started to kick in, but I’m still pretty tense. I must say that I am completely in awe of how my staff handle my challenging behavior too. It must be hard having a mentally disturbed person on an intellectual disability unit. In psychiatric care, they’d probably have sent me for a time-out off the ward. After all, psychiatric professionals commonly see me as a borderline case. I’m not sure my current place is the most suitable for me, but the staff definitely are.

#Blogtober20

The Kindness of Strangers

Posted on by Astrid

Okay, it’s past 2:30AM and I just said I wasn’t going to blog right now, but CrunchityFrog’s prompt for today (well, yesterday) has me thinking. This is supposed to be a daily prompt thing, so I might join in more often. Anyway, the prompt is to write about the kindness of strangers.

I’ve probably written many times already about overbearing, intrusive strangers. Particularly when I was a teen, I didn’t realize that my autistic behavior (of which I was unaware that it was autistic) combined with my blindness often caused people concern. I am more appreciative of people’s attempts, even awkward ones, to help now. That probably changed on the evening of November 2, 2007.

Okay, I’ve shared the story of my mental crisis probably more often than anyone cares to know. Today I’d like to focus on the kindness of the people who helped me stay alive and safe.

As regular readers of my blog will know, I was in a suicidal crisis that evening. I had left the training home I was a former resident of and had hoped to find safety in, because I was told the staff had no responsibility for me and I was to leave.

I took the bus to the city’s train station, talking into my former care coordinator’s voicemail. I told her I was going to take my life that night. I was completely unaware that people could hear me until a woman across the aisle from me started to talk to me. She told me that the bus driver had heard me, which initially only caused greater panic. She kept saying over and over again that he was getting help for me. (“Help”, of course, came in the form of the police, as is customary here in the Netherlands if someone’s safety is in question.) I was in utter shock, constantly crying and very overwhelmed. I am forever grateful for this woman’s kindness. And of course for the bus driver’s. It most likely, after all, wasn’t within his duty to report his concerns to the police.

Looking back, I realize I rightfully worried random people on the streets many times before and they were kind enough to help. Even if “help” meant to call the police. My parents often felt that people were just stupid, assuming that a blind person shouldn’t be traveling independently. Some were, indeed, but in some cases my parents were stupid, assuming that I was just blind.

Negative

Posted on by Astrid

This is probably going to be a quick post. Like I said on Sunday, I was interrupted while blogging by a staff to tell me I and all other clients with cold symptoms were from then on in room-based isolation. We would be tested for COVID-19 as soon as possible. Thankfully, yesterday morning, the facility’s nurse came to test us. It wasn’t pleasant, but it was okay. I am however pleased to inform you that I, as well as all other clients, tested negative for coronavirus!!!

It was no fun being in room-based isolation. The hardest part, for me, was the fact that staff had to go to each client’s room for individual support rather than combining care activities, so there was effectively less time for each of us. The staff who had come to inform me of the isolation, said I could press the call button as often as needed. Well, press the call button I could, but that didn’t guarantee a staff would have time to come.

Yesterday, I landed in a rather bad crisis. Initially, I had been really upset and crying and screaming. Then one staff came to inform me that she wasn’t wearing protective clothes and the staff who was, would come “in a while”. That’s a rather unclear comment to make to an autistic person. I freaked out and became destructive.

For those asking why that staff wasn’t wearing protective clothes, staff need to change into different protective clothing when visiting each person suspected of coronavirus separately. They also need to leave the protective clothing at the client’s doorstep. After all, suppose my snot gets onto the staff’s protective clothing and they then go help someone who isn’t showing symptoms. Then that person runs extra risk of contracting COVID-19. You see, over half of the clients did not show symptoms.

Thankfully, the staff in protective clothing came about ten minutes later. She was able to comfort me a little.

Today at around 2:15PM, I heard the day activities staff tell another symptomatic client that he was free to leave his room. I thought I heard her say that “all is well again” or something like that, but I didn’t dare hope I was negative too. Well, I was! The first thing the staff asked when telling me everyone had tested negative, was whether I wanted to go for a walk. Of course I did.

We also had French fries at the facility’s cost to celebrate the good outcome. I was almost writing “positive”. It’s a positive outcome indeed that everyone was negative!

We’re In Pain

Posted on by Astrid

So we’ve had a mouth ulcer for some days now and as of today, it really hurts. Our staff called the GP, since we can’t go to the dentist now due to our facility’s COVID-19 restrictions and also since they already knew it was a mouth ulcer. The medical assistant couldn’t decide what to do right away so she talked to the doctor herself. Our staff called back some time later. At first, the doctor said to just take paracetamol, but our staff nagged a bit, so now we’ll get some lidocaine gel. This will probably arrive tomorrow.

We somehow misunderstood the doctor’s telling our staff to just give us paracetamol as her thinking we weren’t in significant pain or that we were overreacting. This caused some of us a lot of upset. Over dinner, we were feeling really overwhelmed by the pain and also other clients’ noise. We somehow couldn’t speak until after we’d had a full-on meltdown. Then we got to express our pain and our staff fetched us some paracetamol. That did help some. We’re still in pain, but it’s manageable.

We generally feel very triggered of late. We’re currently reading a foster care memoir by Maggie Hartley called Who Will Love Me Now?. It’s about Kirsty, a ten-year-old being rejected by her first foster carers after they took her in from a neglectful biological mother as a baby. Understandably, Kirsty feels that no-one loves her now and is acting out a lot to prove this point.

I feel a lot of the more disturbed younger parts can relate to this. Thankfully, our parents never abandoned us, but they did threaten to institutionalize us a lot. Age ten was around the time this started.

I also showed a lot of the behaviors Kirsty shows. I mean, I would also often tell my parents that they didn’t love me. Though I didn’t experience the early abandonment Kirsty did, I do most likely suffer with some attachment issues. I can only speculate as to why this might be.

As we’re now in a place where at least so far the staff are saying we can stay, I notice we act out a bit out of a need to “prove” our point. Which is what, really? That no-one wants us, I guess. I’m not 100% sure how to let go of this feeling.

I did journal a lot in my Day One journals over the past few days. It feels good to let out my thoughts. I’m trying to make this a daily habit and hope my blog won’t suffer because of it.

A College Memory

Posted on by Astrid

One of Mama Kat’s writing prompts for this week is to write about a college memory. I wrote about the very same topic on my old blog in 2016, some weeks after it was also a prompt on Mama Kat’s blog. I reread that post just now and was actually going to share the exact same memory. Now I don’t think most people who read my blog now, read my blog then. Still, I want to choose a different memory.

In 2016, I shared the memory of my first day at Radboud University as a linguistics major. I had a massive meltdown upon entering the lecture hall then, because I hadn’t known that there were over 200 students in there. I left and called my support coordinator, who took me to her office. This was the first time the psychiatric crisis service was called on me, but they said I wasn’t “mad enough” (my support coordinator’s words) to be admitted to the hospital.

Roughly eight weeks later, on October 30, I had my last day at Radboud University. I didn’t know it at the time, of course, since I wasn’t admitted to the mental hospital until November 3.

I had an exam that morning. It was my first introduction to language and communication exam. Passing this exam wouldn’t award me any credits, as the credits for the course weren’t applied until you passed the second exam some weeks later.

As always, I took a ParaTransit taxi to the university that morning. I think I had a meltdown right as I went into the building the exam was supposed to be held in, but I’m not 100% sure. I definitely had a meltdown when I was finished. The taxi driver driving me home threatened to dump me at the police station.

Regardless, I did sit in on the exam. Introduction to language and communication is basically a course in dissecting words into morphemes and sentences into their different components (no idea what those are called). That’s why the course was also sometimes called universal grammar.

Several months later, when I was home on leave from the hospital, I retrieved my E-mails. Back at the hospital, I sat down to read them. Among them was an E-mail from the director of studies telling me that the intro to lang and comm instructor had been missing me so had I dropped out? I also found an E-mail from administration notifying me of my grade on the exam: I scored 85%.

Several months ago, when my husband was clearing out the attic for our move to our current home, he found a letter from Radboud University. It was my provisional report on whether I could continue my studies or not. “Your studying results are grounds for concern,” it said. I’m so glad I never saw this piece before.

Mama’s Losin’ It