Mental Health in People With Intellectual or Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone. I once again didn’t have time for writing my letter M post in the #AttoZChallenge yesterday, because I was at the countrywide cerebral palsy day and then at my in-laws and was too tired once I came back to the institution to write my post. Let me for this reason write it today. For my letter M post, I am going to write about mental health as it relates to people with intellectual and developmental disabilities.

People with an intellectual disability are more likely to have mental health problems, including severe mental illness, than the general population. However, in the general psychiatric system, these people are not usually adequately helped. This means that early recognition of people with an intellectual disability is very important. Here in the Netherlands, some psychiatrists actually advocate for administering a simple screening tool for mild intellectual disability to each person coming into care with significant mental health issues. That way, if a person is identified as potentially having an intellectual disability, treatment can be adapted for them.

Other issues in mental health services for people with intellectual disabilities include the need for more trauma-informed care, since intellectually disabled people are at increased risk of being victims of abuse. Of course, trauma treatment, as well as therapy in general, needs to be specifically adapted to meet the intellectually disabled person’s needs. With EMDR, this is possible even with severely intellectually disabled people. Other forms of treatment, such as dialectical behavior therapy and schema-focused therapy, are, with some modifications, useful for people with mild intellectual disability.

In most countries, people with mild intellectual disability are usually seen by general psychiatric providers. However, here in the Netherlands, at least some mental health agencies have specialized teams or even an entire separate agency serving those with mild intellectual disability and co-occurring mental health issues.

Though autism as a co-occurring developmental disability with mental illness really poses some of the same challenges as does intellectual disability, this is not widely recognized. I mean, most mental health agencies here do have autism teams, but these are often dedicated to diagnosis and short-term psychoeducational support of autistic adults. There are a few specialist treatment centers for autistics with highly complex needs due to comorbid mental illness and/or severe autism, but these are inpatient units with long waiting lists. As far as I’m aware, there hardly seems to be any outreach-based, long-term treatment specifically for autistics with complex care needs.

Saying Goodbye to Mental Health Services

Posted on by Astrid

Hi everyone. October 10 is World Mental Health Day. In honor of this, many bloggers are writing about mental health this week. As a person with serious mental health challenges, I think I need to offer up my contribution too. However, mine will be a bit different, in that just last Tuesday I had my for now final appointment with a professional from a mental health service.

I did not usually share details of my less than stellar experiences with my psychiatric nurse practitioner on the blog, but let me say that my appointments, except for those concerning medication, over the past three years, have for the most part been useless. Maybe my expectations of an assertive community treatment team were too high. For those who don’t know, an assertive community treatment team is an outreach-based team that treats the most severely mentally ill, usually care-avoidant patients. As a result, a lot of the care they do is more like support and steering towards services than actual therapy. They do have a psychologist on the team, but the majority of clinicians are actually community psychiatric nurses.

Back when I got kicked out of the psych hospital in 2017, I did need such a team, as I needed lots of support in my daily life. However, once I’d moved into long-term care, maybe an assertive community treatment team wasn’t the most logical choice of treatment teams. And yet that’s where I ended up.

Not to say it’s all my or my referring agency’s fault. My nurse practitioner did flat out refuse to refer me anywhere else even when he should have realized he couldn’t provide the kind of treatment I needed. He also claimed we were doing “trauma treatment” by merely talking over my mental health struggles, which happen to be trauma-related, occasionally. In my opinion, it was neither specifically trauma-focused nor treatment.

Now I know that my staff and the behavior specialist at the care home are probably as capable as my mental health professionals were at helping me deal with my everyday instability. Neither can provide trauma-focused therapy, while both can provide a listening ear (my staff at my old care home at least often better than my nurse practitioner, in fact).

I did, of course, start my topiramate and pregabalin while in treatment with my now former mental health team. This I do credit the team’s psychiatrist hugely for. I don’t honestly think an intellectual disability physician would’ve been able to come up with this idea and I’m not sure a consulting psychiatrist would’ve gotten the idea either. Then again, now that I’m on a stable dose of both meds and only wanting to slowly decrease my aripiprazole, my agency’s intellectual disability physician can manage that.

All this combined got me to conclude that I don’t think I want mental health services anymore. If I or any of my current professionals ever change our minds, I can always get referred back to a mental health agency.

The Wednesday HodgePodge (July 20, 2022)

Posted on by Astrid

Hi everyone. I haven’t posted in a few days, because I was too tired from the heat. It’s still quite hot here, but I feel okay now. Today, I’m joining the Wednesday HodgePodge. Here goes.

1. Last time you drove more than 100 miles from your home? Where did you go?
I don’t drive, but I’m assuming riding in the passenger seat counts too. That being said, the last time my husband drove more than 100 miles with me in the car, was probably eight years ago when we went on a short vacation to the Black Forest in southern Germany. We drove in our Kia Rio, which we later found out deserves its acronym, “killed in action”, because shortly after that trip, the car crashed on the highway and my husband could just about move it onto the shoulder before it completely malfunctioned. We thought we had the problem fixed, but it developed the same problem that had caused it to crash back then again half a year later. Needless to say we sold that car. We’re thinking of going back to the Black Forest this September, but my husband has a really small car now, so he might want to replace that one first.

2. Something that drives you batty?
WordPress’ ever-increasing number of ads on free sites. I hope at least that, since I have a paid plan, they aren’t displaying on mine.

3. Do you feel like you’re “on track”? For what?
In my blogging life, I don’t feel as though I’m “on track”, but maybe that’s just my feeling. I mean, I really would’ve wanted to write at least as much this year as I did in 2021 and, up till the month of June, I was keeping up nicely. Now though, I’m not.

Similarly, I have a ton of craft projects waiting for me to finish them. Not that there’s a timeline for those to keep track of, but it does sort of feel as though I’m losing track anyway.

4. Your favorite car snack(s)?
Licorice and winegums (gummy candies).

5. Something you’ve done recently “on the fly”?
Nothing really. I plan most of my activities at least some time in advance. That being said, I do buy things impulsively at times. Does that count? In that case, going to Action (a budget store) in town and buying some random craft supplies last Monday. The trip into town was planned, and I had sort of planned to go to Action too, but I hadn’t planned to buy any of the things I ended up buying.

6. Insert your own random thought here.
Yesterday, I had a review with my nurse practitioner from mental health and the behavioral specialist from my care facility. I could rant about it here, but I’m not going to. Instead, I’m going to say that, after it, I finally concluded that, screw it, I’m ready to face whatever it takes to get real help for whatever it is I’m facing mental health-wise, be this trauma-related or a personality disorder or whatever.

Heal

Posted on by Astrid

Today’s prompt for Five Minute Friday is “Heal”. I read several of the responses before writing mine. Some left me feeling all sorts of things, which I will try to articulate in the below freewrite.

Is it possible to heal from a hurt you can’t explain in words? Can something that you can’t describe in words, a memory that is just visceral, even be traumatic? I am referring to preverbal trauma, of course and, in theory, I know the answer: yes, it exists and yes, healing is possible.

However, in reality, how can I prevent my cognitive processes from constantly interfering with my experiences? Or should this be prevented at all? I mean, if I can rationalize that I’m now in 2022, living in the care facility and not in whatever danger my body thinks (feels?) it’s in anymore, does it even matter that I endured preverbal trauma?

After all, it’s a fact that I did: I was born prematurely, spent the first three months of my life in hospital and had several complicated surgeries before the age of five. The question is whether said possibly-traumatic events affected me and, if so, how to heal from them.

Longing for Belonging As an Enneagram Type Four #Write28Days

Posted on by Astrid

Welcome to my first post in #Write28Days, a writing challenge I use for self-exploration too. Today’s optional prompt is “Longing”. I haven’t had ideas in mind for what to write about many of the word prompts, but for this one, I definitely have.

That is, the first thought that sprang to mind was not really a thought, but a feeling. A feeling of wanderlust, of always seeing that the grass is greener on the other side of the fence. The actual feeling in my body is hard to describe. I could probably best describe it as a longing for perfection.

I am an Enneagram type Four. As a Four, my core life strategy is that I must be understood uniquely as I am. In the real world though, there is no-one exactly like me, so who is going to completely understand me? No-one is!

Yet, like most other Fours, I long for this elusive ideal of a perfectly fitting life. I see this in my constant search for the perfect care home. I know all care homes have their drawbacks, but in my heart, I always feel there must be somewhere where I will be fully understood and, as a result, my needs will be completely met. Newsflash: there isn’t.

Most Enneagram type Fours experienced some early trauma, distress or loss and keep chasing after that lost sense of belonging. I feel, in a sense, that so do I, but in a sense, I also feel as though I never belonged. Yet my longing to be fully understood, as well as my belief that there must be someone, somewhere out there who will, shows that I have the capacity deep within me to belong. If only I could stop fleeing from that capacity towards the apparently greener grass of a new external source of belonging!

Most Relaxed When I Am Slightly Distressed?

Posted on by Astrid

I had a meeting with my nurse practitioner today to discuss my topiramate. Like I mentioned last Sunday, the increased dosage isn’t doing what it should. I was experiencing slight tingling in my hands and feet and, more annoyingly, increased drowsiness. Moreover, the medication wasn’t working for my hypervigilance; if anything, it was making it worse. The slight tingling in my hands and feet has decreased to the point of almost disappearing over the past few days. The drowsiness has not. Neither has the hypervigilance.

A theory I came up with recently, in a conversation with the care facility’s behavior specialist, is that my ideal level of alertness is really slight distress. In terms of the care facility’s signaling plan, phase 1 rather than 0 is really when I’m most relaxed. The reason, in fact, is that relaxation scares the crap out of me because it includes a sense of loss of control.

I am reminded in this respect of my last surgery as a child, when I was eight-years-old. I clearly remember going under the anesthesia – I had refused a tranquilizer to calm me beforehand – and I also vividly remember keeping on talking, even when my speech became slurred, up till the moment the anesthetic knocked me out. I was deathly afraid of letting go of my control.

I am also reminded of my fear of going to sleep, which goes back to early childhood. It may in part be related to my trauma-related symptoms, because of course my traumas started as early as infancy. However, I wonder whether this is also somehow related to the fear of losing control.

I once heard that benzodiazepine tranquilizers are no good for people with borderline personality disorder, precisely because the anti-anxiety effect causes aggression in them. I am not sure whether my current diagnosis includes BPD or not, but something similar might be going on with me. I don’t generally become aggressive when I’m under the influence of tranquilizers. However, as my nurse practitioner said, this thing does show that alertness and distress are not some linear thing on a scale from -2 to 3 (on my care facility’s signaling plan) in real life.

The bottom line is that we don’t yet know what to do about my topiramate. We’ve so far decided to wait another week or two to see if, since the drowsiness should decrease with time, this will cause the positive effects to start becoming noticeable. If not, we may go back to my old dosage, but I’m not yet sure what to do about my PRN quetiapine then. After all, we upped my topiramate in hopes that I could do without quetiapine then. Right now, I’ve felt like I would’ve needed a PRN medication quite regularly, but I’m trying to suck it up for now. That’s pretty hard. I’ve had a few almost-sleepless nights over the past week and am pretty anxious most evenings. But yeah, I’m muddling through. Thankfully, my nurse practitioner did give me an extra appointment next week to check in on the meds.

Desperate Yet Determined #WotW

Posted on by Astrid

Hi everyone. What a week it’s been. I’ve been swinging between despair and determination, sometimes experiencing both at the same time. Let me share.

Last week, I was in a very depressive, dysregulated, suicidal state. I finally managed to tell my assigned home staff about the nature of the “monster” in me, ie. my suicidal thoughts. She decided to E-mail the current behavior specialist assigned to my care home asking her for help in finding me someone to talk to about this. I mean, I have my nurse practitioner at mental health, but I cannot seem to get it through to him how I’m truly feeling.

I also E-mailed my nurse practitioner, only to get a response saying we’ll talk about it on the 23rd. Well, that was the final straw for me and I’ve pretty much decided I’ve had it with treatment with him. I mean, I know I should have called the team, but it’s not like this is the first time he doesn’t pick up on my signals, be it in E-mails, on the phone or even face-to-face. Our talks have pretty much been meaningless forever. Honestly, the only thing he’s helped me with is getting the right medication, the topiramate, for my nightmares.

This week, I’ve been swung back and forth between the thought that truly there is no hope for me and the thought that, maybe, if I stand my ground firmly enough, I will be able to access the right help somewhere.

I’ve also been ruminating over those two years I’ve been in treatment with my current mental health team. My nurse practitioner told me a year ago that “we could search half the country for a suitable therapist but that wouldn’t make sense”, adding that we’re stuck with each other (as if it was something he hadn’t just decided on himself). Half a year earlier, he wanted to refer me to the specialist autism center, but that got shoved off the table for a reason I was never told. I have been saying for all of the two years that I’ve been in treatment with this team that there are two things I want to work on: my trauma-related symptoms and seeing if I can lower my antipsychotic. Neither has even remotely been started yet. After two years, I’m done.

I am not so naive to think my nurse practitioner is actually going to give in and actually help me find someone else this time around. I have a tiny bit of hope focused on the behavior specialist for my care home, but not much. Even so, I’m pretty sure I can get by with no help from any mental health professionals at all. It won’t be easy on me or my staff, and that’s one reason my staff might pressure me to stick with mental health. Thankfully, so far they don’t.

On the physical health front, I’ve also been swung back and forth between despair and determination. After thinking kind of wishfully that my abdominal discomfort was almost gone last week, it returned on Saturday and has been pretty bad all of this week. Nonetheless, my GP wants me to stick to my current regimen of one magnesium tablet (laxative) per day for two more weeks and have the staff call back to evaluate then. I was pretty upset yesterday when I heard this. Now I’m more resigned to the idea that there’s no hope for improvement of my symptoms.

Overall, right now, despair is taking over, but thankfully I’m not actively suicidal right now. There must be some tiny flame of determination in me somewhere.

How was your week?

Word of the Week linky

Dealing with Anxious Attachment and Attachment Loss

Posted on by Astrid

Okay, I’m probably giving up on the 31-day writing challenge. I love the prompts, but right now, they just don’t seem to inspire me. I’m not feeling well at all right now. Haven’t for about a week or more. Like I shared in my post on Sunday, I have been feeling triggered by my staff being on sick leave. It’s not just that, of course. The change of seasons with all its triggers to my time in crisis back in 2007, doesn’t help either. The emotional flashbacks are so bad I’m considering asking my nurse practitioner to temporarily up my topiramate. For now though, I’ll write a little about attachment loss and abandonment issues.

When I was first diagnosed with complex PTSD and dissociative identity disorder in 2010, part of the consultation that led to this diagnosis involved an attachment styles questionnaire. I scored highest on the anxious/preoccupied attachment style. This means that I tend to depend heavily on others. I struggle to admit this, but it is true.

As such, I fear attachment loss or abandonment a lot. Most anxiously attached people tend to seek another relationship right away when one ends. I don’t have any exes, since my husband was also my first boyfriend, but I do notice it in other areas. For example, now that my assigned staff is on sick leave, I’ve already been thinking about who will become my assigned staff if she ends up not returning. Which, in fact, is something I cannot get out of my head for whatever reason.

Anxiously attached people also tend to cling to dysfunctional attachment figures far too long. Again, I don’t experience this in my marriage, but I did experience it in the psych hospital. I had an assigned staff who was rather adamant that I become more independent than I could be, but I accepted her as an authority for far too long. Same with my psychologist.

I, thankfully, left that place. However, I do find that something I read while researching attachment loss for this post, makes a lot of sense: the idea that leaving a relationship on paper doesn’t mean being emotionally detached from that attachment figure. Again, not my marriage, but with respect to my care situation, yes, that’s so me! I still experience vivid dreams (not necessarily nightmares!) about the psych hospital. I also still look up things about my former care agencies, thinking maybe I should go back. I still find myself being influenced by what my past care providers said about me, no matter how harmful and wrong. This may be one reason I don’t generally meet the avoidance criterion of classic PTSD, but am rather the opposite: I find myself drawn to things that trigger me. Now if only I could find a way to truly let go of the emotional baggage I’m carrying with me.

#WeekendCoffeeShare (September 4, 2021)

Posted on by Astrid

Oh my, it’s September already! I at first was going to type “July” in this post’s title, then thought that it was August, only to realize that month too has passed. The weather is still pretty nice for late summer/early fall: sunny and about 20°C.

Today, I’m joining #WeekendCoffeeShare. I already had all my coffee for the day, so a soft drink or water will have to do. Let’s have a drink and let’s catch up.

If we were having coffee, I’d share that this week has been a true rollercoaster emotionally. It started with my vision screening by the blindness agency. I really want to share more about my feelings of grief and denial about having lost all my vision. In fact, I still always want to put in a caveat about that tiny bit of light perception I still have left whenever I’m saying I’m now totally blind. But I guess that’s what I am: totally blind.

Then again, I don’t want to wallow in my sadness and would quickly move on to demonstrate VoiceOver Recognition and celebrate the powers of technology.

If we were having coffee, I’d also share that the day center is reopening on Monday after eighteen months of being more or less closed due to COVID. My day activities will largely remain in the home with my own one-on-one staff though.

That being said, I did hyperfocus a lot on the details of my activity program and the times staff aren’t directly available for me. This caused some major distress, but I eventually managed to put things into perspective.

If we were having coffee, I would tell you that I finally surpassed my Mom with respect to step count in the Fitbit app. For a while, I myself had been last among my Fitbit friends. I however did get in over 10K steps two days this past week. That’s a big win, considering I struggled to even get to 5K most days last week.

If we were having coffee, I would vent my frustration about my pasta machine, which I use for polymer clay, not working correctly. The thing I use to attach it to the table, won’t work. Thankfully though, the staff who gave the machine to me has a son who may be able to fix it.

If we were having coffee, lastly I would tell you that I’ve been doing a lot of inner work lately relating to my life as a dissociative (multiple personality) system. After some conversations with my assigned home staff, I finally decided to do a system mapping again. Like I mentioned on Thursday, I used to have a list of all of us here on the blog, but removed that as it was less relevant. My staff though do find it useful.

I also downloaded an app called Simply Plural, in which systems can keep track of who’s “in front” (the alter you see on the outside) and can do system polls on decisions too. I will probably write the developer about some bugs in its usability with VoiceOver and some suggestions, but so far, it seems quite cool.

I also finally decided to download some more books exploring trauma and stuff from Bookshare. I might explore the subject more, be it in my personal journal or here.

How have you been?

Unsettling Dream

Posted on by Astrid

Last Monday, I had an appointment with my nurse practitioner. First, I said that I was doing pretty well. This is a big step for me, as I’m not normally accustomed to saying I’m well. He started talking about decreasing the frequency of our appointments and possibly even working towards ending my treatment. While I was able to say that this is far too early for me, at least talking about termination, it all still unsettled me.

I mean, I’ve had my latest med tweak only two weeks ago. Two weeks prior to that, I was in a major crisis.

Honestly, looking at it this way, it seems nuts that he even mentioned terminating. This honestly confirms my fear that if I’m doing well, it automatically means I’ll lose my help. Thankfully, I was able to keep myself from panicking and calmly told him that I’m not ready to stop my treatment now or in the foreseeable future. After all, I still want to lower my Abilify dose and that’d take a psychiatric provider to supervise too.

We eventually agreed on a re-evaluation in December or January and to keep the frequency of my appointments as it is now until then at least. My nurse practitioner already seemed to make it pretty clear he really wants to decrease our appointments by then, but oh well.

The following night, I had my first trauma-related nightmare since going on the topiramate. It wasn’t a direct reliving of a traumatic event, thank goodness. However, my dreams rarely are.

In my dream, I was standing on top of the Erasmus building of Radboud University in Nijmegen, a 20-storey building. Someone I didn’t recognize but who sounded strangely soothing was holding me in a comforting embrace. Then, she said: “Sit down please. I can’t hold you any longer.” Just as I was going to sit down, my right leg slipped and I was standing there with my right foot hanging in mid air. Then I awoke. I immediately realized the symbolism in this dream.

I had the sensibility to press the call button and the night shift came by. Thankfully, she didn’t just soothe me, but encouraged me to actually tell her my dream, which I did. She then confirmed that I’m not in Nijmegen now, but in Raalte.

Needless to say, I’m going to make sure at my next appt, my nurse practitioner understands that just because I’m doing well for a few weeks, doesn’t mean I’m ready to quit my treatment.