What If I Lose My Care?

Posted on by Astrid

Today’s prompt for the Weekly Prompts Wednesday Challenge is fear. More specifically, the organizers ask us to consider whether we ever worry about the “what if’s” of a situation without looking at the positive present. Fear, for me, takes many forms, including post-traumatic stress, in which I relive the past. However, it also includes worrying about the future indeed.

Specifically, I worry about losing my support. Of course, this is a realistic worry in a sense, in that my one-on-one support has only been approved until sometime in late 2023. However, right now it’s only May 2022 and a lot could happen between now and then.

This worry also takes unrealistic forms. For example, sometimes I’m convinced that the psychologist from the psychiatric hospital who diagnosed me with dependent personality disorder to “prove” that I was misusing care, will find out that I’m in long-term care and will report me for care fraud. If she does and if the authorities follow along with her allegation, I will not just lose my one-on-one, but all my long-term care and will essentially be required to move back into independent living with my husband.

In a sense, the fact that this “what if” is my worst fear, does prove sort of that I do have dependent traits. However, dependent personality disorder or dependency in general is not the same as misusing care. After all, I never disputed my psychologist’s claim that I wished to be cared for. What I disputed, is her claim that this wish is unfounded, in that I don’t really need this care.

In a similar fashion, recently I’ve had “what if’s” in my head about moving to another care home. What if the staff there expect me to be much more independent than I am right now? In a sense, one reason I want to move to another care home is to have a better quality of life, a broader perspective. This may include greater independence. But I don’t want to be forced into it.

I am reminded of a question on a personality test I had to fill out for my autism re-assessment back in 2017. The agree/disagree statement went something like this: “Being left behind alone is my worst fear.” I didn’t know how to answer it back then, as I thought at the time that being in serious pain would be worse, so I ticked the “Disagree” box. Then again, at the time, I hadn’t experienced significant time being left to my own resources in at least nine years. Now, I would certainly tick the “Agree” box even though I know it was a red flag for dependent personality disorder. I don’t care.

What if I lose all my care and am left to my own resources? During the same assessment, I had to answer a question about how difficult it would be to stay on my own for a couple of days. I ticked the “Very difficult” box, not the “Impossible” box that I would have ticked now. Then again, if my husband had stocked up on food and I had my computer and phone with me, would it literally be impossible? Hmmm, well… emotionally, yes, it would be.

The Wednesday HodgePodge (May 4, 2022)

Posted on by Astrid

Hi everyone. I’m participating in the Wednesday HodgePodge once again. Here are Joyce’s questions and my responses.

1. May Day! May Day!…last time you shouted for help? Or maybe just asked?
I’d honestly never heard that expression. That being said, I shout for help quite regularly, most commonly when I’m having a horrible flashback or panic attack. Last Monday, I probably didn’t shout for help, but did plea for help. My one-on-one support staff had left me alone because I’d told her to go away in an irritable voice while melting down. This caused me to spiral into crisis. I will spare you all the details, but I eventually came to my senses and was able to cry out for help.

2. What’s something you may do this month?
Visit my sister and her family. I most likely will, since my sister is expecting a baby very soon. Other than that, there are just too many things I may or may not do, such as finish a book, get to another polymer clay project, etc.

3. “April showers bring May flowers”…is this true where you live? What’s blooming? What’s your favorite springtime blossom?
It’s somewhat true, but we haven’t had that much rain in April this year. I’m not really sure what’s blooming here. I do know one of the nearby care homes has tulips blooming in its garden. My favorite springtime flowers are probably hyacinths, but I love many others.

4. What’s something you learned at your mother’s knee?
I am reminded immediately of a nursery rhyme that goes “One, two, three, four, paper hat, paper hat.”. When my mother would count to four, I’d always reply “Paper hat”. When my father would count to four, conversely, even as a toddler, I’d reply: “Five!”.

5. Share a thought about motherhood.
Now we’re probably supposed to share something positive, such as how beautiful the gift of motherhood is or something. I, however, am not a mother and don’t have the greatest memories of my own mother’s mothering me. Besides, my father was my primary caretaker. Not that my memories of him are any better. All that being said, I feel strongly that mothering is a skill that doesn’t necessarily come naturally as soon as a child comes out of its mother’s womb. I wish it were this way!

6. Insert your own random thought here.
Since it’s Liberation Day (from WWII) tomorrow here, I would like to take a moment to show my gratitude for living in freedom, peace and in a democracy.

Dream Small

Posted on by Astrid

It’s interesting that, since deciding to want to start the process of finding me a more suitable care home, I’ve had the lyrics to the Josh Wilson song “Dream Small” in my head a lot. This is a Christian song about the fact that, while there’s nothing wrong with wanting to change the world in big ways, small contributions matter too.

Of course, that’s probably not the meaning behind these lyrics being stuck in my head. I don’t dream of ending world poverty or solving the climate crisis. In fact, the reason I want to move to another care home, has little to do with wanting to improve other people’s lives.

However, in a sense, the title of this song speaks to me, as do certain points in the lyrics. I may want to change my life in a big way by moving to another care home (assuming one can be found), but that doesn’t mean I don’t need to pay attention to the little ways in which I can improve my life right now. I still need to focus my attention on my current quality of life.

I am grateful that I finally found the motivation to look up a polymer clay video tutorial again. I couldn’t at the time actually go and work on the project taught in the tutorial, but I will later this week.

I am also grateful to have started reading again. I finally picked up Thrive by Kenneth Oppel, since I really need to finish the Overthrow trilogy even though Hatch was a bit disappointing.

All that being said, dreaming small does mean that small setbacks can get me to become unstable easily. For example, yesterday I found out that the headphones I bought at the end of March and that stopped working two weeks later, most likely hadn’t been sent out to the manufacturer by the store I bought them at. The lack of clarity about this sent me spiraling out of control. It may just be a pair of headphones – material things, money if you will -, but to me, the situation was quite unbearable.

With respect to the care home situation, I am also reminded of a fellow patient on the locked psych unit who told me I needed to focus on changing myself, not my living situation. This was over fourteen years and four living places ago. I do not fully agree, but partly, I do, in the sense that my distress is partly caused by internal sources. If I keep focusing my attention on external circumstances, these internal sources will not change. If I can reframe my thinking around those, I can decrease my distress. The problem is, I can’t usually reframe my thinking.

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.