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.

My Hopes for 2023

Posted on by Astrid

Hi everyone and a happy 2023 to you all! Regular readers of my blog know that I don’t do resolutions or new year’s goals. Instead, I call them hopes. Whether that isn’t just the exact same but worded slightly euphemistically, is up for debate. However, I found that, many years ago, when I did lists of resolutions, they didn’t work out. Now that I call them “hopes”, I usually probably subconsciously stick to them more. I say this every year as an introduction to my hopes.

This year, I haven’t actually thought of many hopes I have. That is, I do hope to achieve many things, but secretly I do think my “hopes” do need to be somewhat realistic in order to make it onto my new year’s list. Doesn’t that make them just like goals? Oh well, I guess so. With no further ado, I’m just going to write down the things I hope to achieve in 2023.

1. Get to a healthy weight. I never dreamt of writing this when I started my healthier eating journey at the beginning of 2022, but I lost over 10kg in 2022 and I’m only 3kg above a healthy BMI now.

2. Keep up my movement routine. I have my movement goal on my Apple Watch set pretty low at 300 active calories a day. I’d really like to surpass it regularly.

I would also like to improve on the parameters of my physical fitness level, such as my heart rate variability. These are all really low right now.

I am hoping to start actually exercising in other ways besides walking. I’d love to start swimming here on institution grounds.

3. Get to a more stable place mentally. In 2022, I hoped to remain stable mental health-wise, which got ruined by my choice to move and its consequences. Now, I’m hoping to get back to a place of relative calm again.

4. Further lower my antipsychotic dosage. I really hope the move to my current care home doesn’t mean I’m on 25mg of aripiprazole forever.

5. Get to a meaningful day structure and day activities. Okay, I have the new day schedule, which is better than the one my support coordinator gave me, but it’s not what I’d hoped for when I came here. I am really hoping to explore day activities beyond my room, beyond 60 minutes at a time and beyond one-on-one.

6. Write regularly. This is another thing I was pretty awesome at in 2021, hoped to maintain in 2022 and lost track of due to the move. I even only wrote five blog posts during the month of November. I am really hoping to get back into the writing groove this year.

7. Further explore my creative side. I’d really like to find ways to do part of my polymer clay work independently, so that I can actually do more complicated things with my 60-minute time slots of supported activity.

8. Socialize more. This was one of the main reasons for the move, at least according to the behavior specialists involved. Indeed, it is a positive aspect of my current home that wasn’t there at my old home. I honestly don’t know whether I can socialize much with the people at my home, but I can at least try and, if that doesn’t work out, there are almost 400 other residents here at the main institution. I’d really love to talk to some of them more.

I’d also love to connect to my peers in the cerebral palsy community more. I’ll hopefully attend the countrywide cerebral palsy day again in April and also hopefully join the online meetings more often. I’m also hoping to get in touch with the Eye Association more. I know this was something I hoped to achieve in 2022 but didn’t.

9. Get serious about the basics of my faith. I had a discussion about faith with my husband yesterday and the bottom line was that I tried to run without having learned to crawl, so to speak, because I was watching John MacArthur videos, which are deeply theological, even though I’m really still a new believer. I mean, okay, I’ve been a Jesus follower for two years, but I’m still struggling with the basic concepts of the Christian faith. That’s probably why I call myself a “progressive Jesus follower” rather than unapologetically claiming my identity as a Christian. I really hope to move closer on my journey towards God in 2023.

I am linking this post up with today’s #JusJoJan post, for which the optional prompt word is “resolution”. I am thinking of writing another post about resolutions in a different sense, namely the Model European Parliament debating contest I participated in during high school. However, it’s past 9PM so I don’t think I’ll have the time or energy for another blog post.

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.

Book Review: The Words We Keep by Erin Stewart

Posted on by Astrid

A few weeks ago, I was looking for something new to read and decided to look on Bookshare whether authors I’d previously enjoyed, had had books released that I hadn’t yet read. It turned out Erin Stewart had. The Words We Keep was already released a few months ago, but I hadn’t yet known about it. Its blurb immediately appealed to me, as I am myself a mental health consumer and I love poetry. Here’s my review.

Summary

It’s been three months since The Night on the Bathroom Floor–when Lily found her older sister Alice hurting herself. Ever since then, Lily has been desperately trying to keep things together, for herself and for her family. But now Alice is coming home from her treatment program and it is becoming harder for Lily to ignore all of the feelings she’s been trying to outrun.

Enter Micah, a new student at school with a past of his own. He was in treatment with Alice and seems determined to get Lily to process not only Alice’s experience, but her own. Because Lily has secrets, too. Compulsions she can’t seem to let go of and thoughts she can’t drown out.

When Lily and Micah embark on an art project for school involving finding poetry in unexpected places, she realizes that it’s the words she’s been swallowing that desperately want to break through.

My Review

This story is told entirely from Lily’s point of view in first person perspective. I like that, as it shows Lily’s innermost thoughts and experiences through her own eyes. Interspersed are Lily’s made-up words (which took me a while to figure out weren’t actually real English words) and her poems. These aren’t particularly excellent, but they definitely give me a glimpse into her world too. Besides, my poetry as a teen (or even now) is probably worse.

Even though this book deals with heavy subject material, I really wanted it to be a feel-good read too. In this sense, some of the twists I didn’t see coming, disappointed me a little, but they were also important to the overall story.

I really liked Erin Stewart’s writing style of alternating between storytelling and such vignettes as poetry or Lily’s made-up words.

Overall, I gave this book five stars on Goodreads, but I would’ve given it 4.5 stars if Goodreads did half stars. The reason is the disappointment I felt at some of the plot twists. This book really gave me a bit of a book hangover.

Book Details

Title: The Words We Keep
Author: Erin Stewart
Publisher: Delacorte Press
Publication Date: March 15, 2022

#WeekendCoffeeShare (July 23, 2022)

Posted on by Astrid

Hello everyone on this fourth Saturday of July. I’m joining #WeekendCoffeeShare today. It’s been a few weeks. Let me share what’s been going on.

If we were having coffee, I’d ask how your weather is. We haven’t had an official heatwave here, as we had only three days of daytime high temps above 25°C. Then again, on Tuesday, the temperature reached 39°C. That’s not a record, for your information: the Netherlands’ official all-time heat record was reached three years ago and it was almost 41°C.

If we were having coffee, I would tell you that, on Monday, I took a trip into town with my staff. I had to get some toiletries and new baby wipes (which I use for cleaning my claying supplies). I also went into Action, a discount store, actually looking for origami paper. I didn’t find any, but did buy some clear stamps, a stamping pad, blank cards and alcohol ink. As it turns out, I will most likely only be able to use the alcohol ink for my clay, and I’m not 100% sure how, as it contains glitter. I mean, that may damage my pasta machine rollers, so I may need to only roll by hand when I’ve used this alcohol ink. I might find other uses for the other supplies. I was thinking of starting up simple card making again. Now my past self is laughing and telling me “No!” in a firm voice at the same time, but I’ve already decided not to invest any more money into it. If I can’t do this at all, that’s €4,95 wasted, but some people at the day center may still be able to use my supplies.

If we were having coffee, I’d share that I’ve been loving coming up with some ideas for my polymer clay. I’ve also been watching a lot of YouTube tutorials. I’m still not actually crafting much, but that will hopefully change soon, as I managed to blend three different intensities of the same color green that I intend to use for a unicorn. Let’s hope this unicorn turns out great!

If we were having coffee, I would share that I really need to mind my food plan again soon. I am still just overweight as opposed to obese, but I do need to watch out that my weight isn’t creeping back up. On Monday though, my sister and her family will be here for a belated birthday visit and we’re going to order pizza I think. That will be the fourth time in a month that I’m either eating at a restaurant or ordering takeout. After that, I’ll seriously watch my diet. I’m already trying to make sure I’m not having too many treats. For instance, yesterday I was hungry mid-afternoon and decided to have some carrots rather than going for my licorice. I think that counts for something.

If we were having coffee, I would resist the urge to rant about my appointment with my psychiatric nurse practitioner and the care facility’s behavior specialist on Tuesday. It was really frustrating, but I’m not ready to share the details. I would instead refill your cups and ask you how you are.

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.

Mental Health and Creativity #AtoZChallenge

Posted on by Astrid

Hi everyone. For my letter M post in the #AtoZChallenge, I’d like to talk about mental health as it affects my creativity and vice versa. There’s a common stereotype, and it isn’t entirely untrue or so I’ve heard, that people with severe mental illness are also often particularly creative. At the same time, autistics are commonly thought of as especially unimaginative. Now I indeed don’t have the most vivid imagination, but I wouldn’t say I have aphantasia (the inability to form mental images) either. I wish I were more imaginative and able to create things in my mind’s eye than I am though.

Anyway, my mental health is interconnected to my creativity in that, when I am depressed, I cannot usually put the effort into doing anything creative. For years while in the mental hospital, I struggled to write even one blog post a week. Now that I’m more stable, I at least find myself able to write almost daily. Still, I notice that my crafting ebbs and flows with my mood.

I also experience a huge flow of ideas sometimes, but am not always able to put them into action. For example, I have been wanting to craft a polymer clay squirrel for weeks and did indeed mix the colors I wanted to use for it, but I haven’t actually gotten down to starting on the sculpture itself.

Due to my autistic obsessiveness, I can perseverate about a particular aspect of my craft for a while, then lose interest completely. Some autistics have special interests that last for years or even a lifetime. I don’t. In my case, I am really lucky that I still enjoy polymer clay pretty much everyday nine months after having started the hobby. I do tend to change which aspect of it I’m most interested in though. Right now, of course, it’s mixing colors.

My creativity impacts my mental health in a positive way, in that I find in it a means of distracting myself from my anxious or depressing thoughts. When I accomplish something in the area of my creativity, it is a true mood booster. Conversely, of course, when I experience frustration while crafting, it can have a negative effect on my mental health.

Where I Think I’ll Be in a Year’s Time Based on My Current Daily Actions #Write28Days

Posted on by Astrid

Hi everyone. Welcome to day four in #Write28Days. Today’s optional word prompt, “nesting”, didn’t quite speak to me. I also wasn’t really inspired to write any sort of in-depth personal growth article. Rather, I picked up a collection of journaling prompts called The Self Exploration Journal and chose a prompt I hadn’t used on this blog before. It asks us to reflect on where, based on our current daily actions, we can expect to be in a year’s time.

Now I know that my future is in God’s hands, not mine. I have no way of knowing where I will be one year from now. That however doesn’t mean that I can’t take daily actions to hopefully live a healthier and more enriched life. Today, let me share some things I’m doing to take care of myself and some things in which I could still improve on and what I think these will mean for my future.

First, last month, I started on a healthier diet. It’s been a rocky road and I’m still struggling to find my balance on it. During the first week, I felt like I was just eating lettuce and carrots and was disappointed that I’d lost only 0.5kg. Now, I think I’ve found a better balance, but I might’ve swung slightly too far to the other side again. After all, this week, I had a sausage roll for lunch on Wednesday and a cheese roll today. I still am losing weight (or at least, I had a maintain this week). Based on my overall daily actions, I can expect to probably have lost a few kilograms next year, but I can’t expect to be anywhere close to a healthy BMI. Then again, that isn’t my goal.

Given that I hardly walk or exercise in other ways lately, I can’t expect my physical fitness level to improve. It’ll probably have declined by next year.

Mental health-wise, I can expect to still be in treatment and take my medication as prescribed, but I can also expect to still be quite vulnerable. Of course, I am always hoping that the next med tweak or change of treatment will be the thing that’s going to help me stabilize forever, but I have to be realistic: that’s not going to happen.

In the creative department, I can expect to experience ebbs and flows. I will probably have improved my polymer clay craft, having explored mixed media. I will likely still be a blogger, publishing several posts a week at least.

Given that, even though I look at other living places almost daily but haven’t actively decided I want to move, next year, I’ll likely still live in my current care facility. I’ll likely still be married to my husband too.

In summary, I can’t expect anything major to change for the better in the coming year but I am hopeful that I won’t make a turn for the worse either. I am hoping for slight improvements in the healthy eating and crafty departments. And, of course, I do really need to get my behind off the chair, but we’re talking current daily actions and that’s not happening right now.

House Inspection

Posted on by Astrid

One of Mama Kat’s writing prompts for this week is to tell us about a time someone showed up at your front door. Since I no longer live in regular housing since moving into the care facility, no-one ever shows up at my front door unexpectedly and, if they do, the staff will open it for me. When I still lived with my husband though, several times, people would show up at my front door unexpectedly. Not salespeople, thankfully. However, my experiences with the housing corporation were so bad that my husband actually asked me not to open the door. I always reflexively did anyway.

One time, the housing corporation, or I’m assuming some technical company sent by them, showed up when I did expect them. They were supposed to be repairing our gutter, but asked a ton of questions about where the problem was located and what kind of gutter we had. I had no idea and the people said they couldn’t just climb onto the roof and have a look. I called my husband to inquire, but he didn’t answer the phone, so they left without having done anything. This encounter led me to get into a mental crisis.

The first time the housing corporation showed up unannounced was in early August of 2017, just two weeks after the gutter repair guys had showed up. They came to ask us to weed the path behind our backyard. I had no idea there even grew plants there, but, under pressure, agreed to ask my husband to do it within a couple of weeks. Apparently, the back neighbors had been complaining, since I don’t expect the housing corporation to come out from the town to check on our tiny village house for no reason.

The other time was in September of 2019. My husband had scheduled the final inspection of our home for the 26th, when I’d be at the care facility and he’d be home alone. However, they showed up a week early when I was home alone. I was sleeping when I heard the doorbell and felt I had no time to dress into my day clothes, so quickly ran downstairs to open the door.

I told them they were a week early, but they insisted they take a look around “now that we’re here anyway”. After their inspection, they asked me to sign a document. I initially refused, but they insisted I am a renter too (I was). Then they asked: “Can you read?” I explained that I can, but not print, since I am blind. “There’s nothing to worry about in this document,” they told me. In my overwhelm, I signed and sent them on their way. My husband did complain about the way they’d treated me this time and it was my final reminder of why I want to never live in regular housing again.

Mama’s Losin’ It

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