Temp Workers #WotW

Hi everyone. May I take the opportunity to join Raisie Bay’s Word of the Week Linky (a little late) to share about my experiences with temp workers this week? That’s my theme for the week for sure, as the week both started and ended with a temp worker doing my one-on-one shift.

Well, technically the one doing my shift this evening was self-employed, not employedd by the temping agency. However, my point is that neither had been oriented to my shift. The one doing my shift this evening, had had a few regular group shifts in my care home before, but still, she was really new.

On Monday, I lay in bed most of the morning, because this woman was just completely clueless as to what to do and also didn’t seem to show any interest in me at all. She paged through my information folder, but I was rather surprised if she got something right out of it. It didn’t help that the two staff working the regular shifts were also relatively new.

Today, I braced myself for another difficult shift. I had been told that the staff doing my one-on-one today had a lot of experience working in psychiatric hospitals, with which I don’t have the best of experiences. I mean, just because I’m a nutcase doesn’t mean I want to be treated like I’m just a nutcase. And I don’t mean this in the way you’d expect: I don’t want people to expect me to comport myself just like that because all I am is a mental patient who “knows better”. After all, in truth, sometimes I don’t know better.

This morning, I learned that said staff also has a lot of creative talent. My morning one-on-one thought she might be able to teach me macrame. This scared me a little, much as I’d really love someone who knows what they do in terms of creative work. After all, they also know bad crafting when they see it. As it turned out, indeed, the staff was able to talk me out of pursuing macrame any further. She did admire my polymer clay creations though and said I could sell them. This tells me she doesn’t know clay, but I was back in my comfort zone again where I’m the “expert”. I showed her how to blend a color (that I later realized I already have in my collection, but oh well).

I did through both temp worker shifts, notice that my assigned staff made several mistakes in my daily schedule. For example, today at 3:15PM, the afternoon staff came by my room with coffee even though I’d already had coffee at 2:15PM. As it turned out, both times are listed as coffee breaks. I don’t really mind usually, although if the staff who comes on at 4PM also forgets my water, it means I’ll have lots of coffee in me and not enough plain water. I know reports vary on the hydrating effect of coffee and most say you retain at least two-thirds of the water. I try not to make a big deal out of it, but it does get confusing.

Speaking of coffee, I did play today’s staff a little. She was making coffee at 7PM because the regular staff had forgotten. She got the can labeled “regular coffee” and started putting it into the machine. I could’ve said then that, per the home’s rules, we drink decaf at 7PM, but didn’t. We both had a little laugh when I did eventually tell her once she’d already turned the coffee maker on.

Word of the Week linky

The Staff Have the Key

I have a morbid sense of humor that has sustained me through the darkest times of my life. I remember when I was in a suicidal crisis in 2007, being held at the police station while waiting for the crisis service to assess me, telling the officers how I wasn’t all that creative, since I had thought out only a few ways to die. I think one of the officers tried to distract me by saying that I must be creative, since I have a blog, but I wouldn’t listen.

Once I had been admitted to the psychiatric hospital, locked ward, with no privileges (as they are called) to leave the ward unsupervised by staff, I started to crack jokes. They were rather lame jokes if you ask me, jokes I’d plucked off the Internet, such as those about the differences between the patients and staff on a psychiatric ward. First, the patients get better and leave; second, not all patients believe they’re God; lastly, the staff have the key.


This post was written in response to this week’s Six Sentence Story Link-Up, for which the prompt word is “key”.

Autism and Aggression: An Autistic Adult’s Perspective

April was Autism Awareness Month. In previous years, I have dedicated my #AtoZChallenge to autism, but this year, I chose a different topic. For a while, I had it in mind to focus on developmental disabilities in general, but, as you can see, I chose another topic entirely. However, the topic of autism is still on my mind. In the coming weeks, I want to offer more of an insider’s perspective on autism and its characteristics. After all, I am autistic and I feel that the blog coverage on autism is heavily divided between parents of autistic children sharing their stories and adult autistics sharing advocacy. Now there’s nothing wrong with advocacy – I feel passionate about it too -, but there is also nothing wrong with personal experience stories. What is wrong is when these are mostly one-sidedly coming from neurotypical (non-autistic) parents of autistic children. Hence, my insider’s perspective.

For my first post, I am choosing a rather controversial topic: aggression. When parents talk about their child with autism, one of the first things they will usually mention is the child’s aggressive behavior. And in fact, this was the first thing my parents would say when asked to describe my problem behaviors too. It was also what got me to be referred to the mental health agency for an evaluation at age 20, which ultimately led to my autism diagnosis.

I don’t know about statistics of aggression in general, but it is highly stereotypical to equate autism with violent behavior. Autistics are not more likely to be deliberately violent than neurotypicals and they are, in fact, more likely to fall victim to violent crimes.

That doesn’t mean aggression doesn’t occur and, when it does, that it isn’t related to the autistic person’s autism. To say that it’s a “comorbidity” is, in my opinion, doing the autistic a disservice. It is, however, an issue that arises in the interaction between the autistic person and a highly autism-unfriendly world. After all, at least I have often gotten aggressive when my needs for autism-supportive care are not met.

For instance, one day in the psych hospital, a nurse, whom I will call Sara, had said one evening that she’d get back to me the following day after morning report to talk about getting me unsupervised off-ward privileges. The next day, I went up to Sara, but wasn’t able to communicate clearly what I wanted. “I’m not your assigned nurse today,” Sara said. “Go to Daisy if you want something.” Now the nurse I’ll call Daisy was a temp worker, so clueless about my needs or what I’d talked to Sara about the previous day. I got very irritable, because Sara had promised me she’d get back to me and now she was referring me to Daisy. I screamed, walked around the ward restlessly and constantly nagged the staff in an irritable voice. By handover, a third nurse, whom I’ll call Robert, came on and said that he’d put me in seclusion if I didn’t calm down right away. “Go on then, stupid,” I shouted. So he did.

This was not my worst incident of aggression ever. As a teen, my mother reports, I would hit her. I currently still occasionally slap or push staff. Usually, this again results from staff not following through on something or not following my daily routine.

I feel strongly that, though not all incidents of aggression can be prevented by parents or carers providing autism-sensitive support, a lot of them can. If an autistic is aggressive anyway, there are much better ways of handling it than solitary confinement.

loopyloulaura

Also linking up with #PoCoLo.

Flash Fiction: Can I Go?

“I just want to go to a friend for two nights,” Patricia yelled, asserting her words with some colorful language, as she grabbed the nearest chair she could reach. “You are NOT going to treat me this way,” nurse Nancy replied with more anger in her voice than she probably intended. More calmly, she added: “If you want to go on leave for longer than originally agreed upon, you need to discuss it with Marjorie, and she’s not available right now.” At that point, a blonde nurse in her mid-thirties entered the ward. As Patricia saw her, her anger rose and, heaving the chair off the floor, she threw it at Marjorie, barely missing her. Turning to the nurse’s station, Nancy told Patricia, not even looking at her: “Here are your meds and the address for the homeless shelter; for your severe aggressive behavior, you’ve been suspended until Monday.”


This piece of flash fiction is based on a true story from a fellow patient at the locked psychiatric unit back in 2008. I always felt rather conflicted about patients, especially those without a home, being suspended for severe challenging behavior. In this case though, the patient got exactly what she wanted.

I am joining the Six Sentence Story Link-Up, for which the prompt this week is “Shelter”. I am also linking up with Friday Writings, even though it’s Saturday. The optional prompt is conversations you’ve overheard. Though I didn’t exactly overhear this conversation, as it was told to me by the fellow patient later on, I thought it’d be fitting enough.

What It Was Like Being a Patient on a Psychiatric Ward #31Days2021 #Blogtober21

I’m still not too inspired to write. Today’s optional prompt for #31Days2021 is “patient”. Obviously, most people will write about “patient” as in the adjective derived from patience. I won’t. I want instead to share what it was like being a patient in a psych hospital.

As regular readers of this blog will know, I spent 9 1/2 years in a mental hospital between 2007 and 2017. I spent my first sixteen months on the locked ward. This is pretty much as I imagined it before I entered the psych system myself: floridly psychotic patients screaming and exhibiting other erratic behavior, staff running around trying to control it. Like I said yesterday, I witnessed people being secluded and being forcibly medicated several times. I was an informally admitted patient, so I couldn’t be subjected to any form of restraint. This isn’t to say it didn’t happen, as I said.

The staff/patient ratio at my ward was around 1:5 during the day. This means there’s not much time for staff to keep regular tabs on what patients are up to if they aren’t kicking up a fuss. I, in fact, at one point got told I would be put into time-out if I “needed more care than we can provide”.

After those sixteen months, I transferred to an open resocialization unit and later another open ward. The staff/patient ratio there was around 1:10, sometimes even less. As a result, patients had to help one another out sometimes.

On the locked ward, I had treatment plan reviews once every six weeks. This was because the ward was basically a crisis intervention/stabilization unit, where officially you could stay a maximum of six months. I must say there wasn’t much in the way of therapy. Of course, most patients admitted to this unit, suffered with psychotic disorders, for which the main treatment is medication. For me, it was decided I just had to figure out a place to go after pulling myself out of the worst crisis and, for this reason, I had mostly contact with the social worker.

On the resocialization unit, I did get psychotherapy. This was where I was diagnosed with (complex) PTSD and dissociative identity disorder in addition to autism. Thing is, once I moved to the other ward, these diagnoses were all removed. It was decided I was just care seeking and dependent and needed to be kicked out of the hospital.

We did have day activities most days on each psych unit. However, not all patients were able to participate. I, for one, usually was not.

In summary, my entire psychiatric hospital stay was one lengthy journey of changing diagnoses, social workers who tried to find me a place to live but had a very narrow view of what I needed, limited nursing support and hardly any day activities. I did start two of my three current daily psych meds while in the hospital. However, I must say, looking back, I hardly made any progress during those 9 1/2 years.

#WeekendCoffeeShare (March 12, 2021)

And this time I’m extremely early with my #WeekendCoffeeShare. This week was rather eventful, especially the last couple of days. I just had my afternoon coffee today. You can probably get a cup of coffee, tea or a soft drink from the staff, but I’m so glad this meeting is actually virtual.

After all, if we were having coffee, first I’d share that I’m in room-based isolation. I started having a sore throat yesterday, but wasn’t sure it was the fact that I’d just had a screaming fit or it was actually a symptom of illness. The staff on shift yesterday tried to reassure me. Today though, I woke up very sniffy. I warned the staff, but at first she wasn’t concerned this time either. After she talked to a colleague though, I had to be in room-based isolation. The staff are now wearing protective clothing when entering my room. I’m usually in my room anyway when not walking. For this reason, if I do have COVID, it’s unlikely the other clients will have caught it too, at least from me. The staff though, well, they’ve definitely been at risk.

Thankfully, one of my home’s staff is one of my facility’s appointed testers. She swabbed me right this morning and the test should be at the lab right now. Please all pray that it’ll come back negative.

As for how I’m feeling, well, I’m okay. I’m a little sick to my stomach in addition to the cold symptoms, but overall it’s manageable. I don’t have a fever and my oxygen saturation was normal too.

If we were having coffee, then I’d tell you that I didn’t have as good a walking week this week as I had last week. The reason is that, besides not being allowed out today, I wasn’t allowed outside of the home on Tuesday either. Another client had to be tested for COVID. Thankfully, his test came back negative. I heard this the next morning, but today the staff told me they’d been informed already Tuesday evening at 10PM. I asked the staff to wake me up if this happens with my test too (only if it’s negative).

If we were having coffee, I would share that I had a really productive appointment with my psychiatric nurse practitioner yesterday. The staff who’d seen the PTSD video with me last week, accompanied me. Together, we were able to explain my continuing issues with hypervigilance, flashbacks and emotional dysregulation. I was able to explain about some of my traumas, including traumatic experiences within the psychiatric system. My nurse practitioner was able to validate me from his own perspective as a former psych hospital nurse.

If we were having coffee, lastly I would share that I made a coconut-mango smoothie this morning. It didn’t taste as good as it could have and I’m not sure whether to blame my cold symptoms or the chunks of coconut that weren’t properly blended.

What’s been going on in your life?

Gratitude List (February 8, 2020) #TToT

It’s Saturday and I haven’t published a blog post in a few days. Today I am bored and slightly depressed, so I thought I’d join in with Ten Things of Thankful (#TToT) to lift up my mood.

1. Soap making. On Sunday, I asked my husband to sort through my soaping supplies. He didn’t need to though, as the essentials were all in a wheeled shopping bag. My mother-in-law took me back to the facility on Sunday evening, so she put the entire thing in the back of her car and helped me get it inside. I took it to day activities on Monday and have been making soap a few times this past week already.

2. Ordering new supplies. I didn’t have a lot of soap base in the bag, so I had an excuse to order new soaping supplies. Besides new soap base, I ordered bath bomb and bath salt making supplies. I never made bath bombs or bath salts before. I am really excited to try.

3. The cooking activity at day activities. I used to do a simple cooking activity with the staff intern on Wednesday. Now that her schedule has changed, we do it on Tuesday. This past Tuesday, we in fact had ingredients for two recipes: ham and cheese sandwiches and a creamy cookie dessert. The reason is that last week, we didn’t do the cooking activity because I had a meeting with the behavior specialist then. The intern had time to help me with both. We ate the sandwiches for lunch and had the cookie dessert later in the afternoon. It was extra gratifying, as the clients on my side of my day activities group can’t have sandwiches due to swallowing issues, but most can have the dessert. We served the sandwiches to the other side and I actually had both.

4. My weight. I got weighed in on Wednesday and I had a small gain of 200 grams (less than half a pound). I attribute that to all the treats I had on Tuesday though. I’m also happy, because people actually notice that I’m skinnier (or rather, less fat, of course) than I used to be.

5. Some long’ish walks. I mean, no, I don’t walk for an hour like I used to at my old day activities and with my home support staff, but I did have some walks of about half an hour. Despite not having walked in the evenings much this past week, I did manage to get to 175 active minutes.

6. The support from my assigned staff. I was somewhat distressed this past week, as I’m still not fully recovered from the meltdowns I had last week. However, my support staff are all very helpful.

Like, yesterday I had a meeting with my nurse from the mental health agency. When I explained my difficulty coping with the noise at day activities, she started to suggest I move to an apartment building for autistic people and occupy myself there or go work at a sheltered workshop. This isn’t suitable and my staff helped me explain this to my nurse.

7. French fries and ice cream. My husband said on Thursday that he couldn’t come by for a long visit today but could take me out to have some fries and a snack for dinner. Today, he canceled. Of course, I miss my husband, but I didn’t miss the fries, as my staff thought it’d be a good idea to order fries and snacks for the entire home. We also had ice cream, which was still left over in the freezer from Christmas. I had the last serving of whipped cream-flavored ice cream.

I can’t get to ten, but I’m definitely in a brighter mood now. I guess that should be my eighth grateful on this list. What have you been grateful for lately?

A Letter Explaining My Life Right Now

Today’s topic in 7 Days 7 Posts is to write a letter to someone explaining your life right now. I have been thinking about reconnecting with the head nurse from the psychiatric resocialization unit for a while. She was one of the most supportive people I ever met during my psychiatric hospital stay, but still, she was a bit prejudiced. Here is a letter to her.

Dear K,

How are you? I hope you are well. Do you still work for the psychiatric hospital? When I last spoke to L (my named nurse from the resocialization unit), she informed me that the entire Nijmegen long-term care hospital was closing and moving to Wolfheze. Do you work there now?

When I last wrote to you and L, I explained that I was living with my husband in the tiny village and going to day activities. I didn’t inform you that I was struggling. I eventually got kicked out of my first day center with this agency and transferred to another one.

Still, I struggled with independent living with my husband. My husband is a truck driver now and his shifts are like 12 hours a day. For this reason, we finally applied for long-term care funding at the end of 2018, which after a long battle was granted in June of 2019. As of September, I live in a care facility for people with intellectual disability in Raalte. I know you didn’t want me to go into housing for people with intellectual disabilities. Well, I am happy here.

We involved the Center for Consultation and Expertise again when I was struggling at my first day center. The consultant psychologist assigned to my case assessed my needs. Among other things, she concluded that I function emotionally at a level of around 6-18 months.

I go to day activities at a group for older people with profound intellectual disability, most of whom live with me too. I go for almost daily walks. I love to go to the snoezelen® room too. I also do a weekly cooking activity with the staff intern. It’s sometimes difficult to figure out activities I can do, because the other clients mostly just sit around and I almost need one-on-one support with most activities.

I am still married to my husband. We bought a house in Lobith, but this is mostly for him to live in and for me to go to on week-ends.

I still see the mental health team, but have decided not to pursue any formal therapy program for now. Dialectical behavior therapy, which I used to try, didn’t work out because of my autism and my dissociative symptoms. I don’t feel comfortable going through the assessment for dissociation though.

Anyway, hope you are doing well. I suppose L is around retirement age now, but if she still works at the hospital and you still see her, send her my warm regards.

Astrid

Friday Evening Ramblings

Hi all,

A lot has happened over the past few days. Last Tuesday or Wednesday, we were checking out the website for our current care agency and we found out they have stories from clients, family and staff on the website. One of the stories was about a woman who lives with minimal brain dysfunction. This is the old term for invisible effects of brain injury. She had this from birth. I loved reading her story. It was so relatable. Then again, some of us were feeling off. Like, this woman lives in housing for people with brain injury and some wondered whether we can do this too.

Then we had an idea. We read about a training program called Hersenz. This translates roughly to “brain etc.” It is kind of like a continued course about the effects of brain injury and learning to handle those at home. For like when you can’t be in a rehabilitation center but can’t quite cope at home either. I don’t know whether it’s for people who live independently only, as we have no intention of leaving this facility.
I then inquired about whether there’s a brain injury cafe in my area, where people with brain injury come once a month to discuss their issues. There isn’t as far as we can tell, so oh well. Oh, you all know that we have some level of brain injury from a brain bleed we sustained shortly after birth right?
We also have been thinking of asking whether we can have our story on the agency website too. That would be fab!
Today we had a meeting with our psych nurse and nurse practitioner from the mental health team. I can’t quite remember all that we discussed but it was a good meeting.
Oh by the way, I’m Danique. I’m 21 like Clarissa and I guess I split off from her. Not really sure why. I don’t care though. There’s someone softly telling me that splitting isn’t possible in adulthood unless you experience recurring trauma, which we don’t right now. Well I don’t care. We also think we found a younger one who is 11 and is called Janita or Janique Or Janelle but she isn’t really sure about her name.
I feel pretty awesome right now! I guess there’s someone else feeling triggered or sad or whatever, as I sense those feelings too.

Danique

Panicked Ramble

Hi, I’m Carol. I struggle a lot with our autism. I’m a little panicky at the moment. First of all, I woke up with terrible pain in my left shoulder. It’s been bothering me alll day. We finally took an ibuprofen when we got home from day activities at 5PM. It’s better now, but still bad.

This morning, I overheard the staff at day activities talking about a possible new client joining our group. I immediately worried that this’d mean I’d be kicked out. Not because they need the place (or maybe because of that too), but maybe if my challenging behavior worsens as a response to the staff being busier. That’s what happened at my previous day activities. Then again, they had three new clients join the group in a matter of weeks.

Moreover, we had a Christmas meal at day activities today. This meant my day was different from the usual Tuesday. One of the staff at my group had to help clean up after the meal, so she was in the kitchen most of the afternoon.

Then the staff started talking about day activities next week. They’re closed on Monday but open on thursday and Friday. Then, only six of us will be at the center, which really isn’t enough to justify staff being there. They said that the center normally closes if fewer than ten clients will be there. We want so badly to attend day activities and I somehow understood they’re considering closing the center next week. The staff reassured me, saying they had to set this rule for next year but for now the center will be open.

Still, when I got home, the whole thing overwhelmed me. I started seeing images in my mind of myself with worsening challenging behavior. I felt unsafe at home alone and rejected too. Like, they kicked us out of the independence training home in 2007 and out of the institution last year because of our behavior. Rather than giving us more care when we needed it, they gave us less. Same with the old day activities place. I really hope we can somehow find us suitable supported housing, but I’m so scared that no place wants me. I finally called the on-call nurse at the psych hospital and had a chat with her. That was good, but I feel guilty about having called, because my team say I really shouldn’t need the prescription phone call anymore.