Moving Into the New Care Home

Posted on by Astrid

Hi all. I’m departing from the #31Days2022 prompts today, because the prompt for today, “other”, didn’t spark any creative muse in me yet. Instead, for today’s post, I am writing about my move into the new care home. It’s been quite the overloading day, to be honest.

I had set the alarm for 7:30AM, because the moving crew would be in Raalte at eight to collect my desk and chair. The rest of my belongings had been moved to the new home yesterday. Not surprisingly, I woke up before the alarm went off. Thankfully, there already was a staff available for me. When the moving crew had removed my furniture, I had breakfast at another table.

Thankfully, there still was time for a walk before it was time for me to collect the stuff that could go into the staff’s car and to drive off to the new home. This stuff included the soft toy I’d slept with, my clothes from the night before as well as the goodbye presents I’d gotten from the home and day center. One of the day center staff specifically came by to say goodbye to me on her day off.

As we got here to the new home, we were greeted by a man whom I’ve come to assume will be my assigned staff but of which I’m not sure. We were allowed to unpack, which took several hours. I had lunch after everyone else had already had theirs.

My staff from my old care home in Raalte left at around 2PM. From then on, several staff have come and gone into and out of my apartment. I did go for a walk around grounds at around 3:30PM. Several clients from other homes greeted me and my staff and started talking to us. I liked it, but it was a bit overwhelming at the same time.

At around 5PM, I got very irritable. The reason was the fact that my call button doesn’t work as of yet. It looks like it may’ve been set to be received at the night staff’s office in the main building, where during the day there’s no-one. I hope that’s true, as otherwise I won’t be able to reach anyone during the night.

I also found out there’s no handle to lock my room’s door from the inside without a key. I immediately drew the conclusion this means I can be locked into my room. Of course, the staff said they wouldn’t, but the mere fact that they can, causes me intense fear.

I am trying to stay as calm as possible as I write on my blog now that I’m alone. Thankfully, I can tell time – the staff verified this, which may seem stupid to those reading my blog but was actually validating to me. Now that they know I can tell time, they can tell me when they will be back. This does help me.

Autism and Aggression: An Autistic Adult’s Perspective

Posted on by Astrid

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.

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

Posted on by Astrid

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.

Time-Out Rooms, Comfort Rooms, Snoezelen® Rooms: Special Care Rooms in Mental Health and Disability Services #31Days2021 #Blogtober21

Posted on by Astrid

Today, I’m not feeling too inspired. The optional word prompt for the 31-day writing challenge is “Comfort”. For some reason, probably the fact that I’ve been experiencing a lot of flashbacks to my time in the mental hospital lately, I was immediately reminded of comfort rooms. Then I thought, maybe I could use this post to raise some awareness of the different kinds of special care rooms used in mental health and disability services.

Back in my early days in the mental hospital in 2007, seclusion or isolation was pretty commonly the only intervention used, maybe in combination with forced medication, on disruptive patients. I was initially admitted to the locked ward only because the open ward had no available beds. During my first night in the hospital, I heard a lot of screaming and was later told that the staff “handled it appropriately”. Another patient told me that the screaming patient pretty much lived in the seclusion room. I was pretty scared out of my mind.

Once moved from my parents’ city hospital to my own city’s locked ward, I again experienced seclusion as a witness repeatedly. The ward I stayed on, was the less restrictive locked ward, so it didn’t have isolation rooms. Rather, ours were called time-out rooms, but that didn’t make them any better to be honest.

I experienced one hour forced time-out once, three months into my mental hospital stay. After that though, it was used as a threat repeatedly. This, for clarity’s sake, is illegal: seclusion can only be used to avert danger, not as punishment.

About three years into my mental hospital stay, some wards, particularly locked wards, started deconstructing their seclusion rooms and repurposing them as “comfort rooms”. A comfort room in theory looked nicer, as it had soft toys in it and maybe some special lighting. However, them being repurposed seclusion rooms did mean they still had the vibe of isolation about them. Indeed, the few times I was sent to the locked ward for a time-out once at the open resocialization ward, I spent my time in the “comfort room”. This did not feel comforting at all.

My last psych ward, which I spent four years on between 2013 and 2017, had both a comfort room and a time-out room. This comfort room was indeed actually comforting. There was an essential oil diffuser, a CD player, comfy couch and a few other things. What made it different though was the fact that you couldn’t be locked up into it. If you were to be locked up, it’d have to be in the time-out room.

At the end of my psych hospital stay, I first learned about snoezelen®. This, like I’ve explained before, is a method of helping people with significant intellectual or developmental disabilities by modulating their entire sensory environment. I wanted to experience what a snoezelen® room would be like. My psych hospital had an intellectual disability unit with a room like this, but my psychologist refused to let me visit it, claiming I’m far too capable for this type of activity. I stood my ground and got a place at my first day center with my current agency, which did have a snoezelen® room.

When I was at my first day center with my current care agency, the snoezelen® room was sometimes used as a time-out room for me, in that I was forced to go in there when I was irritable and not allowed to come out. Though the door couldn’t be locked, it did feel intensely triggering to me. It is one reason I still struggle to be in my current day center’s snoezelen® room if no staff is present.

Of course, I must say here that an old-fashioned time-out room has hardly any furniture: just a bed and a stool, both attached to the floor, as well as a toilet made of metal. The seclusion room the screaming patient from my first night in the hospital was locked into, was likely even worse. Comfort and snoezelen® or other sensory rooms are much better. Still, the idea that someone can be put into solitary confinement against their will, is rather disturbing if you ask me.