Brain Injury As It Relates to Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone. We’ve arrived at my letter B post in the #AtoZChallenge. I struggled with what topic to choose for this letter, but eventually settled on brain injury. As you will find out, this type of disability has a kind of controversial relationship to intellectual and developmental disabilities. After all, many people view an intellectual or developmental disability as necessarily present from birth. The American Association on Intellectual and Developmental Disabilities (AAIDD), however, considers an intellectual disability as having originated before the age of 22. In the Netherlands, the age of onset cut-of for an intellectual disability care profile in the Long-Term Care Act is 18. As such, people who acquired a brain injury in childhood affecting their ability to learn, are diagnosable as having an intellectual disability.

With respect to other developmental disabilities, such as autism, the diagnostic waters get even muddier. I, for one, was diagnosed as autistic at age 20 despite having suffered a brain bleed as an infant. Then, ten years later, the diagnosis was removed again because apparently a brain injury no matter how early on precludes an autism diagnosis. However, I could not be diagnosed with acquired brain injury-related neuropsychological or behavioral difficulties either, because these would have required a clear before/after difference. Besides, I am blind too, so most neuropsychological testing isn’t possible on me. As a result of this, I ended up with just a regular personality disorder diagnosis. Now I’m not 100% sure I don’t have a personality disorder, but it’s certainly not all there is to me diagnostically.

In the Dutch care system, people with acquired/traumatic brain injury usually fall under physical disability service providers, unless they have really severe challenging behavior. In that case, they usually either end up in an intellectual disability facility or a psychiatric hospital. There are a few specialist mental health units for people with brain injury, but these are treatment-based, not living facilities. There are also nursing home units for people with brain injury, but these cater towards people over 65.

Confronting My Dependent Shadow Side

Posted on by Astrid

This afternoon, I downloaded a small collection of shadow work-based journaling prompts. One of them is to write about the time I felt most offended by someone. What did that person say or do? And more important, what was my reaction? I am encouraged to focus mostly on the emotions involved rather than the mere facts.

The first thing that came to mind, was my former psychologist diagnosing me with dependent personality disorder. This, though, didn’t really offend me: it scared me. After all, she claimed not just that I was being passive and clingy, as people with DPD often are, but that I was misusing care. I, obviously, disagreed and feared losing my care because of her diagnosis. This, indeed, did happen about six months later.

The moment I felt most offended though, was the moment in June of last year when my husband said he thought I might have DPD. He may’ve forgotten that this was the exact diagnosis my psychologist had given me in order to kick me out of the psych hospital, since he did not propose I move back in with him. His reasoning was, however, the fact that, even with one-on-one support for most of the day, I still struggle.

I felt intensely triggered and scared again, but also angry. However, I wasn’t necessarily angry with him, but with my own dependent side. After all, maybe, just maybe, he is right indeed.

Deep down, I do know it is crazy to want – to feel I need – one-on-one attention all of the time. I don’t even want it, truthfully. Right now, I’m very content being by myself. But then again, why do I feel so anxious some of the time when my staff leave? Why can’t I make simple choices? Why do I need my husband to take responsibility for any major parts of my life? These are telltale DPD criteria!

I am not even scared of the diagnosis itself. Diagnoses are just labels. But I am scared of losing the care I have now, like I did in 2017. And then the little voice, my independent part, is telling me that I coped just fine. I mean, I know I took two overdoses of medication during my first six months of living with my husband, but wasn’t that just manipulation?

Couldn’t I have a much better, much richer life if I unlearned this intense fear of needing to fend for myself? Yes, yes, yes, I could! But does unlearning this fear mean being given a kick in the behind and being forced to live with my husband again? Maybe there are steps in between. Like, today I poured myself a glass of fruit-infused water, spilling a little over myself, but I did it anyway. I felt intense anxiety, because I knew my staff noticed and maybe she’s going to expect me to always be able to do this independently. Then again, so what? Then the worst thing that could happen is I can’t get fruit-infused water if this staff is working my shift and I don’t feel like pouring it myself. Is that so bad after all? And just to say, the staff didn’t even tell me to pour the drink myself. I just noticed the bottle was in front of me and I decided to try to do it. I could’ve asked her to pour the water for me, in which case she’d likely have done so. She is a staff who generally encourages independence, which sets off my demand avoidance. However, the fact that I not only did something independently I wouldn’t normally have done, but took the initiative rather than being encouraged (read: pushed), gave me a confidence boost.

Rebirth

Posted on by Astrid

I remember reading a story some years ago in the book Preemie Voices by Saroj Saigal. This is a collection of autobiographical letters from people who were once premature babies in the university hospital NICU Saigal worked for. I, like the contributors, was a preemie.

In this particular story, the author shared how she felt she has three birthdays: one, her actual birthday, the second, her original due date, and the third, the day of her rebirth. In this author’s case, her rebirth meant being diagnosed with Asperger’s Syndrome (her choice of words).

I haven’t experienced one such pivotal moment in my life. I mean, I too could choose the day I was diagnosed as autistic (March 16, 2007). Then again, my diagnosis has been removed and reaffirmed so many times that I could just as easily choose the last time I was diagnosed (May 1, 2017). Besides, self-diagnosis is valid too.

I could choose the day I was given long-term care funding (June 4, 2019). Maybe that is the most pivotal moment in my life, but it didn’t exactly mean I was reborn.

I could, of course, choose the day I became a Christ follower (December 7, 2020). Many people in the Evangelical Christian community say they are Born Again and indeed, rebirth in Christ is a common Biblical concept. However, I am more of the opinion that, as Christians, we are on a continuous path towards God. I believe that, each time I consciously pick up my Bible, or the cross my husband gifted me and which I use for prayer, or each time a message from God truly enters me, I am transformed a little bit. I don’t believe that I will be made fully new until the day of Jesus’ return.

All that being said, I do believe I am not the exact same I was a year ago. I am not even the same I was yesterday. Or when I started writing this post. In my view, every single moment is an opportunity for rebirth. Every second we are given is another second chance.

This post was written for Reena’s Xploration Challenge, for which the prompt this week is a theme: rebirth.

Because I’d Had a Stroke…

Posted on by Astrid

I couldn’t possibly be autistic, my psychologist said, because I’d had a stroke as an infant and that somehow precluded a diagnosis of autism. Never mind that autism is genetic and said stroke supposedly didn’t change my genetic makeup to make me neurotypical. I, however, had to be diagnosed with acquired brain injury-related behavior change instead, but then again I couldn’t either, because I was too young when I sustained the stroke for my behavior to be considered as having changed either; after all, a six-week-old infant hardly shows any behaviors that would be considered significant in an adult. For this reason, I ended up with just some regular personality disorders, specifically dependent and borderline PD. Never mind that these have their onset in early adulthood and I’d shown symptoms since childhood. As it later turned out, my psychologist’s reason for changing my diagnosis had nothing to do with logic and everything with her wish to kick me out of care.

This post was written for the Six Sentence Story link-up, for which the prompt word is “stroke”. It isn’t completely factual, in the sense that, though my psychologist kept referring to what happened to me at six weeks of age as a stroke, it was actually a brain bleed. That doesn’t change the rest of the story though.

#WeekendCoffeeShare (February 19, 2022)

Posted on by Astrid

Hi everyone on this gloomy Saturday evening. I’m joining #WeekendCoffeeShare today. I’m right between my dinner and my evening coffee and I cannot offer you a drink other than water right now, as my staff is busy and I don’t want to leave my room. I’ll get to that bit later. So, can I get you a drink of water? Otherwise you’ll have to wait until my staff returns. Anyway, let’s have a chat.

If we were having coffee (or water, in this case), I’d share that we’re quarantining right now, as four or five of my fellow clients are positive for COVID. Four are confirmed and the fifth one can’t be tested but is treated as having COVID too. I took a lateral flow test right after dinner this evening and so far I’m still negative, as are the four other clients supported by the same staff as me outside of my one-on-one hours.

This is the reason the staff are busy, with the staff who care for the COVID-positive clients having to wear PPE and the other staff having to remain out of these clients’ way. It is all rather chaotic.

If we were having coffee, I’d share some of my new clay creations with you too. Like I think I said yesterday, I finally created a cactus on Monday evening.

Polymer Clay Cactus

Then on Wednesday, I created my second-ever polymer clay cane. This one I did using a heart-shaped cutter for the image. I managed to do the reducing all by myself! Then I had my staff cut it into slices, which we then made into beads.

I also created several possible charms to go with these beads. One is a heart which I do kind of like. The other was a unicorn, but I threw that one away. I now only need to make more beads, because, even though I have more than just the four beads shown in the picture above, I don’t have enough for a necklace.

If we were having coffee, I’d share that, this afternoon, I have been experimenting with photo editing and meme making again. I didn’t have any success, of course. I mean, I found a photo editing app called Snapseed, which is relatively accessible with VoiceOver, but the one thing I wanted to do, ie. add text to an image, was not. That is, I couldn’t for the life of me figure out how to enter the text I wanted to add onto the image.

The result of all my experimenting is that now I have eight apps in my Photography folder on my iPhone rather than the four I used to have. And those four already seemed excessive, being that, besides the camera and default photos app, I only use one out of the two image recognition apps I have. Oh well.

If we were having coffee, I’d share about my nurse practitioner’s appointment on Thursday. I am so thankful we were still allowed to leave the home back then, because the appt was really productive. With respect to my new medication, the pregabalin, my nurse practitioner recommended I wait and see another two weeks before concluding it’s ineffective for my anxiety. We discussed my anxiety in a little more depth and also for the first time in a long while went into my diagnosis. He actually said he believes my diagnosis is DID (dissociative identity disorder) or at least some variation of it (ie. other specified dissociative disorder). I quickly talked over it saying it doesn’t really matter, as I know firstly he can’t diagnose me (but then again the psychiatrist can) and secondly I still haven’t had the extensive assessment required for a DID diagnosis in most places here in the Netherlands. That being said, it felt so good to be validated like this! My nurse practitioner also finally will make room for us to discuss my flashbacks at a later appt. He said the reason he didn’t go into it right then was the limited time left in our appt, but he’d definitely like to discuss it with me. That feels kind of weird, but in a good way.

If we were having coffee, lastly I’d share that I’m so glad the storms are finally over. Last Wednesday night, I hardly slept at all due to the high winds. Thankfully, last night and the night before that were better. My husband’s and my house did suffer some damage to the roof though. Hopefully insurance will be able to cover the cost of getting it repaired.

How have you been?

Autism Diagnosis and Rediagnosis: Do Labels Matter?

Posted on by Astrid

Earlier today, I saw a blog post about adjusting to a late autism diagnosis. The author didn’t receive her diagnosis till her mature years, while I was 20 when first diagnosed as autistic. Still, I could relate to some of the things she discusses.

Particularly, I related to the fact that diagnosis changed my perspective in quite a radical way. I was no longer just a bad, difficult person. I was autistic. Always had been.

As regular readers of my blog might know, I have had multiple autism assessments since my first diagnosis in 2007. The reason for this is complicated and mostly related to the fact that professionals kept questioning my diagnosis and wanting further testing. At one point, the records of my most extensive assessment disappeared due to a change of electronic record keeping systems and this led to my then psychologist jumping at the opportunity and removing my diagnosis altogether.

Most autism support groups online are open to self-diagnosed individuals. The main one I was part of at the time, however, I found out, was not. I was heavily criticized and distrusted by the other members after I’d lost my diagnosis. They thought my psychologist had finally unmasked me as someone with a personality disorder rather than autism.

Of course, I also needed an autism diagnosis in order to get the right support. With just borderline and dependent personality disorder on my file, I would be treated much differently by the mental health agency than with autism as my diagnosis. I wouldn’t be able to get support from the intellectual disability services agency either. Thankfully, I got my autism diagnosis back.

Interestingly, the psychologist who removed my autism diagnosis, always said that diagnoses didn’t matter, yet she was the one constantly throwing around new diagnostic labels at me. In a sense, an official diagnosis doesn’t matter, in that self-diagnosis is valid too, at least outside of the need for services. For instance, I self-identify with a dissociative disorder even though I haven’t had this official diagnosis in over eight years. However, to say that labels don’t matter and that all that matters are the symptoms, as she said, is quite frankly wrong. Especially in the context of the need for services.

After all, I am the same person with the same symptoms whether I am diagnosed as autistic or as having borderline and dependent personality disorder. The treatment approach is quite different though. With autism, I need structure and a fair amount of support. With BPD and DPD, I mostly need to be taught to self-regulate by being made to take responsibility. Of course, in an ideal society, services aren’t rigidly based on someone’s diagnosis, but in our current healthcare system, they are. Because of this, I am so glad I currently have a well-established autism diagnosis and that my current support team at least don’t question it.

Treatment Plan

Posted on by Astrid

While in the mental hospital, every six weeks, or later, every six months, I’d have a treatment plan meeting. Not that my treatment or its goals changed anything over the 9 1/2 years that I remained in the hospital; my treatment goal was always to find me a suitable place to live and my treatment involved, well, what, actually? I honestly can’t tell you even now that it’s been over four years since I’ve been out.

What did change, were my diagnoses; from autism and an adjustment disorder (which explained my acute crisis that had led to my admission), to autism and impulse control disorder, to autism, dissociative identity disorder and PTSD, to eventually no autism at all and just borderline and dependent personality disorder and a little bit of depression (not otherwise specified) thrown in (just because with just personality disorders on my file I would have had to be discharged right away). The nurses said the psychologist who’d added depression, did me a favor that way. I think they were just completely clueless as to what they were doing with a complicated case like mine.

This post was written for the Six Sentence Story Link-Up, for which the prompt word this week is “Treatment”. I am not sure I did it right this time. I hope I did.

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.

Dissociative Identity

Posted on by Astrid

The person in the mirror is not me. The person who carries this body’s name, doesn’t really exist as its own identity. We, as in, me and about 40 other insiders (also known as alters, parts or headmates depending on your perspective), share the body. We each have our own names; none of us claim the body’s given name, even though we’ve never felt comfortable claiming a collective name for ourselves other than Astridetal. We all have our own ages and more or less age-appropriate abilities too.

This evening, I was talking with our assigned staff after another small crisis in which one of the more emotionally immature insiders came forward. I was talking about the fact that we switch between alters more than I’d like to admit on a daily basis. I mean, Annemiek is our crafty insider. When we do polymer clay or jewelry-making, she’s out in the body. She, however, can see in the inner world, even though the body is completely blind. So when she gets frustrated with the intricate aspects of crafting, she shoves someone else forward.

Deborah was out this evening. She is 22-years-old, but very emotionally immature and very mistrusting of others. She is one of the ones claiming to need even more one-on-one support than we already get.

Our staff knows about our existence, but she didn’t know how we juggle the frequent switches on a daily basis. Some of these switches are not as overt as Deborah’s coming forward this evening. For example, when Annemiek is crafting and everything goes to plan, she can be pretty well-collected.

At one point, the staff suggested we create a list of insiders. We used to have one here on the blog, but deleted it as this blog evolved from a mental health blog to a more eclectic blog. Sadly, it turned out I hadn’t saved the file anywhere, but I had created a list some nine years ago for a former therapist. That one was quite eye-opening, as not only have a lot of insiders emerged since then, but some old ones have changed roles. It was very interesting looking at and updating the list.

Sometimes, it hurts that I’ve lived with these strangers for so long. I know for certain that some of us emerged as early as 2001. That’s twenty years ago. Even so, I suspect some of us have been inside this body for far longer, as is commonly the case with people with dissociative identity disorder (a diagnosis we do not currently have, by the way, but used to). I cannot at least remember a time without alters.

This post was written for Reena’s Xploration Challenge #197.

My Worst Fear

Posted on by Astrid

This week, one of Mama Kat’s writing prompts is to share one of your fears. I have a lot of fears and phobias, to be honest. I probably would even meet the criteria for generalized anxiety disorder if it weren’t for my autism, which encompasses a lot of worry in itself already. In fact, when my former psychologist had removed my autism diagnosis, she at one point considered diagnosing me with GAD.

She ended up diagnosing me with dependent personality disorder though. And, as much as I used to fight this diagnosis, it fits in some important ways: being left all alone is probably one of my worst fears.

I obviously didn’t tick that box when filling out the screening questionnaires for my independent second opinion after said psychologist’s diagnosis. I also ticked the box for “very difficult” rather than “impossible” on the WHODAS (assessment of level of disability) question on being on your own for a few days. Obviously, that only got me assigned a lower number on level of disability, not a different diagnosis, but I wasn’t aware of this. Besides, my diagnostician was able to see through my not having ticked that one box, so, though she didn’t diagnose me with DPD, she did recommend I work on my self-confidence.

Whether it means I’m pathologically dependent or not, I don’t care though: I fear being left to my own resources. And to be honest, no amount of kicking me in the butt has helped with this so far. Neither have so many years of independence training and therapy. I guess I just need to live with it. And that’s okay at least as long as the authorities aren’t going to see this as a reason to revoke my access to long-term care.

I mean, it’s not just fear. I fear being left to my own resources because I legitimately have no clue how to live my life independently on a daily basis. I can, with a lot of difficulty, perform most activities of daily living, such as showering, brushing my teeth and getting dressed. I now mostly get help with these, because it costs me a ton of time and energy having to do them on my own. For those saying I used to do these things by myself, I would like to add that this came at a cost to my dental health and physical hygiene. But if I really had to, I probably could do all of this. However, where it comes to housework, I’m pretty much lost. I cannot prepare my own food. Like, when I lived on my own in 2007, I ate bread without toppings because I couldn’t put them onto my bread. I wouldn’t die doing this for a few days, of course, and there the “very difficult” answer on the WHODAS may be correct. But it would be my worst fear come true.

Mama’s Losin’ It