How I’ve Focused My Attention and Energy on What Is Missing As an Enneagram Type Four

I’ve been meaning to write more, seriously. There’s a lot on my mind, but somehow I can’t find the words to express myself. To get started, I chose a prompt from the Enneagram-based journaling prompts book I own for my type. As those who’ve read about me and the Enneagram before will know, I’m a type Four or the “romantic individualist”. The first prompt for my type in this book asks me how I’ve focused my attention and energy on what is missing.

On the surface, this seems to resonate with me, in that I’m always looking to improve my situation even when I’m relatively content. I don’t mean right now – right now I’m far from relatively content. However, back when I was in my former care home, honestly I had it pretty good and even so I was focusing on what was missing. In that case, this was, among other things, a sheltered institution environment. I badly wanted to live on institution grounds and completely lost sight of what I would lose if I took the leap to move here. And that was a lot.

In a sense, focusing on what’s missing isn’t necessarily bad. It allows a person to consider steps to improve their life. For instance, something I’ve often missed is to be a more contributing participant in my care home. Today, my assigned staff and I were discussing my birthday and I mentioned wanting to help cook the meal one of the weekend days (the staff only cook homemade meals on weekends now) around my birthday. She told me this doesn’t need to wait till my birthday and we now have a plan for me to help cook köfte for the home next week.

Often, in this sense, a wish to improve my life starts with something I’m missing. At other times, it starts the other way around, with an impulsive idea to buy something only for me to realize later on that something I feel I’m lacking in is underneath this impulsive idea. An example is my former assigned staff at my old care home having mentioned the idea of me getting a mini fridge. I got all excited, started thinking up ideas, but eventually it turned out I was missing certain supports.

As an Enneagram type Four, I am always longing for something. In this respect, the idea that I’m “always dissatisfied”, as my staff think, is sort of correct. That doesn’t mean I need to settle for something that’s absolutely unsuitable, like my current care home, though. Yes, I took the leap, but that doesn’t in itself mean I am forever stuck here. I am hoping that, if I ever find a place to live that is slightly less unsuitable than my current care home, I can stop chasing the ideal and start embracing what’s missing as an opportunity for growth in myself as much as for improvement in the situation.

Linking up with #PoCoLO and #SpreadTheKindness.

Youth: Issues Specific to Intellectually or Developmentally Disabled Children #AtoZChallenge

Hi everyone. Phew, we’re almost done with the #AtoZChallenge. For my letter Y post, I thought I’d talk about issues specific to youth with intellectual and developmental disabilities.

Children, disabled or not, by definition, are still growing and developing towards their full potential. As a result, most developmentally and intellectually disabled children and young people will not qualify for long-term care. They are, instead, served under the Youth Act, which falls under the local government. This means that their parents or carers will need to reapply for care at least every year.

Most children with intellectual or developmental disabilities will go to school. Like I mentioned before, those with milder disabilities, due to “suited education”, are forced to go into mainstream classes. This particularly applies to autistic or otherwise neurodivergent children with an average or above-average IQ, but when doing research for this post, I found out that children with a mild intellectual disability (IQ 55-70) won’t qualify for special ed unless they have additional needs too.

Children with moderate to severe intellectual disabilities and those with mild intellectual disabilities and additional issues will usually go into special education. Usually, these schools have different educational levels depending on the severity of the child’s disability. I heard that some schools allow pupils in the highest level to take part in the lowest level regular school, called practice education, part-time. Practice education has only recently become part of the regular, diploma-earning educational system; until I think last year or the year before, pupils in these schools would just earn a certificate.

The most profoundly disabled children, who are deemed “unteachable”, will go to day centers for children and adolescents with intellectual disabilities. Some of these day centers do have a “school prep” group too.

I feel very strongly that “suited education” and the Youth Act leave behind a lot of children with intellectual and developmental disabilities. I mean, the government wants to cut the youth care budget even more and, though I understand this given the fact that one in seven children nowadays receives a form of youth services, this should not affect children with genuine intellectual and developmental disabilities. Like myself twenty to thirty years ago, though in my case being left behind was due to my parents’ denial.

Unique: A Rant on the Demise of Individualized Care #AtoZChallenge

Hi everyone. Today for my letter U post in the #AtoZChallenge, I want to rant really. I am not feeling well and really feel like, as an individual with developmental disabilities, my unique needs are missed in favor of what “everyone” or “the group” needs.

Back in like 2009, on my first WordPress blog, I already wrote a blog post criticizing care profiles for their doing away with individualized care. After all, care was now grouped into “care heaviness packages” (the old word for care profiles) based solely on one’s primary disability and one’s score on a rating scale, rather than there being different care classifications for each different sort of care (eg. support, personal care, housekeeping, etc.).

This is not what I want to talk about in this post though. Rather, I want to talk about the individual’s care needs being shoved under the carpet because they do not align with what that particular home is used to providing in general. And, in the case of my current home, it isn’t like there aren’t exceptions.

I cannot go into detail without breaching confidentiality – although really the staff shouldn’t have told me confidential information about other clients, truthfully. However, my home consists of “the group”, which are six clients or six clients plus me, and then there’s either me or I’m part of “the group” depending on whom you ask and when, and then there’s a client who gets full-time one-on-one. The one-on-one client is exempt from almost everything “everyone” needs to deal with, such as temp workers, regular switches in staff, of course alone time, etc. I don’t know all the reasons behind this and even if I did, I wouldn’t be allowed to disclose them here, but I frequently find myself being jealous of this client because her needs seem to take precedence over everyone else’s.

Then when competing for having our needs met, it’s me against “the group”. The home employs an extra full-time staff member to do my one-on-one even though I don’t qualify for full-time one-on-one, so I figured this should be a no-brainer: we all get our needs met, since I’d get my one-on-one and then there’s still even some hours when there’s an extra staff for “the group”. “The group” should be in luck! Well, no such thing: I am in luck if I get my one-on-one according to my day schedule and even then staff complain that I ask for too much if I ever so much as dare leave my room once during my time without support.

As for the temp workers, well, my needs get met last, because “the group” needs at least one regular staff and even if there are three regular staff members on shift, usually the fourth will be sent to support me so that the second won’t have to explain too much to number three.

In another situation, too, my individual needs get shoved under the carpet in favor of what “everyone” needs, ie. when I’m treated harshly for having a meltdown. I often hear staff say that they’d treat my fellow clients the exact same they treat me. Well, it may be so, but I’m not my fellow clients. I am me and I have my own unique needs.

Technology and Its Usefulness for People With Intellectual and Developmental Disabilities #AtoZChallenge

Hi everyone. I am back with my letter T post in the #AtoZChallenge. Today, I want to talk about technological advances and their usefulness (or lack thereof) for people with intellectual or developmental disabilities.

There exist a myriad of technological devices to presumably help people with intellectual or developmental disabilities. Some include alternative and augmentative communication (AAC) devices. While these are not for everyone, some people definitely benefit from them. Some of these technologies require a special device, but there is an increasing number of AAC apps available for conventional smartphones and tablets.

Other technologies are used to help people with more severe intellectual or developmental disabilities have different sensory experiences. For example, there’s a thing called the CRDL (pronounced “cradle”), which can be used by a disabled person along with their caregiver. When the device is touched in various ways, it produces different sounds and if I’m correct even vibrations.

Other pieces of technology merely help a person to relax, such as the InmuRelax, a sort of pillow which produces a soundscape when held in order to calm people during the night. Having used the Inmu a few times, I can say I prefer my music pillow, which is far cheaper.

Then there are of course interactive “pets”. These are not stuffed animals and should not be treated like toys, so people with severe or profound intellectual disabilities are probably not suited to handle them. Rather, they are electronics with some fur around them to make them look like real-life cats or (small) dogs, which people can then stroke or cuddle with gently. These interactive animals are mostly intended for people suffering from early to mid-stage dementia rather than for the intellectually disabled, although I’ve seen them being well handled by more capable intellectually disabled people who realize these are like pets, not toys.

Lastly, there currently is a research project going on with “social robots” in long-term care for people with intellectual disabilities. These robots could be programmed to, for instance, remind clients to take their meds, do certain tasks, or they could even ask them questions. It is kind of intended that the robots would become a “buddy” to the intellectually disabled person. I honestly cringe at the idea. Not the reminders or even if the robot woke me up with a cheery “Good morning, Astrid, what would you like for breakfast?”. I am reminded of a time my psychologist, back in like 2013, asked me whether I was okay with a robot doing my morning routine. When I said “Hell, no!”, she saw this as a sign of dependence. I currently start my day on my own anyway, so whether it’s my vibrating, beeping Apple Watch waking me up or a robot, I don’t care. And as for the reminders, I’ve actually thought about asking my staff to help me learn to use a day scheduling app. However, the cringe-worthy thing for me is the “buddy” part. Yes, I know long-term care needs to be cut, but a robot isn’t going to replace human interaction if you ask me.

Restraints and Other Restrictive Measures in the Dutch Care System #AtoZChallenge

Hi everyone. Today, it’s time for my letter R post in the #AtoZChallenge. I didn’t know what to write about for this post, so I looked at some books for inspiration. Then, the topic of restraints came up. This is quite a controversial one and sadly restraint and other restrictive measures are still commonly used here in the Netherlands. At least here at my current care home.

In the Netherlands, in 2020, the Care and Force Act replaced the law on exceptional admissions to psychiatric hospitals that previously regulated restrictive measures. Under the old law, only those involuntarily committed to care facilities or psychiatric hospitals could be subjected to restrictive measures against their will. This was not to say people weren’t pressured into consenting to restrictive measures. For instance, when I had been at the locked psych unit for a few months in early 2008, I was significantly dysregulated. My doctor told me she was implementing seclusion and, “if it doesn’t work, we’re going to file for involuntary commitment”. She should have said “if you don’t consent”, but I had no idea I even had a right to consent.

Under the Care and Force Act, anyone receiving care can be subjected to restrictive measures, which are euphemistically and rather incorrectly called “involuntary care”. Yes, even people receiving care in their own homes. And like I said “involuntary care” usually isn’t care at all, but are measures to restrict someone’s freedom, often in the absence of appropriate care. For instance, if a person with dementia lives independently, they can be involuntarily prevented from entering their own kitchen if they’re a risk of leaving appliances on.

I don’t know the exact criteria for people to be subjected to restrictive measures. It has to do something with risk of significant detriment to the client or others. I was, at my old home, subjected to some restrictive measures. For instance, several doors were locked at night because I would enter those areas (eg. the kitchen) and be a danger to myself there. Here at my current home, the door to the living room and all entrances are locked at night anyway and have been from before I came here. I do know at least one fellow resident is locked up in her room at night. This, to me, feels a bit unfair, particularly because there’s no night staff directly available and the ones in the main building usually just tell us to go back to sleep when we press the call button.

Restraint specifically – restricting someone’s physical movement – is also commonly used here. I, thankfully, have only been physically dragged by several people a few times and was never shoved to the ground or forcibly held in position.

The author of the book I read, which is a parent’s guide to autism, recommends not reacting to a disabled person’s meltdown at all unless in such a way absolutely necessary to keep them and others safe. I am not sure I agree, since honestly I don’t feel that many people with developmental disabilities do have the self-regulation skills necessary to calm themselves. In my experience, “crying it out” will not teach them those skills, but will teach them that you’re not available. In the same way, I honestly don’t feel that someone will actually have a meltdown just so they can be restrained, as the author claims. I, honestly, have never felt that having my movement restricted was comforting.

Long-Term Care for People With Intellectual and Developmental Disabilities #AtoZChallenge

Hi everyone and welcome to my letter L post in the #AtoZChallenge. Today, I want to talk about long-term care as it pertains to individuals with intellectual or developmental disabilities. My post is going to be a bit centric to the Dutch situation, as that is what I know best.

In the Netherlands, people who need lifelong care fall either under the Long-Term Care Act or the Social Support Act. Criteria for the Long-Term Care Act are very strict, as it covers lifelong 24-hour care in a care facility (or in some cases at home, but I don’t know that much about that). In other words, to qualify for this type of care, you need to prove that you will never be able to live without 24-hour care. The Social Support Act covers community-based supports, but also temporary supported housing, such as independence training for young adults. (Care for under-18s is covered by the Youth Act, which is in some ways similar to the Social Support Act but covers more domains.)

The Social Support Act is implemented by the local government. This means that, if you decide to move while receiving social care, you’ll need to reapply. Since care under the Social Support Act isn’t lifelong either, you will also often need to reapply. Some cities will grant significantly disabled people funding for five years, but some won’t and this means you’ll need to have a “dinner table talk” as assessments are called, each year. On the other hand, under the Long-Term Care Act, your right to your care profile is lifelong and countrywide.

Care profiles make up the funding classification system in long-term care. These care profiles are based on one’s primary care ground and then on one’s level of care needed. There are criteria for each care ground and then criteria for each level. For instance, for intellectual disability care profiles, an IQ below 85 that was apparent before the age of 18 is required. I do for this reason obviously not qualify for an intellectual disability care profile. My care profile is based on visual impairment.

Until 2021, psychiatric disorders, and that included autism if you happened to have an IQ above 85, were exempt from qualifying an individual for the Long-Term Care Act. The reasoning was that mental illness is treatable, so individuals with psychiatric disorders cannot prove they’ll need 24-hour care for the rest of their lives.

Back to care profiles. For intellectual disability, there are I think six different profiles. Most people with profile 3 and 4 (profiles 1 and 2 no longer exist) will live in community-based supported housing. I am more familiar with people with care profile 5 and 8, which are severely intellectually disabled people who need a lot of (profile 5) or total care (profile 8). I am also familiar with profile 7, which is for individuals with an intellectual disability and significant challenging behavior. My visual impairment care profile is comparable to profile 7 in intellectual disability.

These three profiles I mentioned, are the only ones that can qualify a person for “extra care”, ie. what I usually refer to as one-on-one support. Extra care, unlike the care profile itself, is temporary and specific to the regional Care Office. For this reason, if I am to move out of the area of my Care Office, I will lose my one-on-one and my new care agency will need to reapply.

Legal jargon aside, what is it like living in long-term care? Well, most agencies for the intellectually disabled have one or more main institutions but they do aim for community-based living when possible. In fact, when integration was hyped up in the 1990s, some agencies simply demolished their institutions and started moving even the most severely disabled or behaviorally challenged individuals into the community. Back in 2006 or 2007, I criticized a documentary criticizing this move, saying it was poor care that caused deinstitutionalization to fail. However, let me just say I’ve made up my mind.

Hello Monday (April 3, 2023)

Hello everyone. I’m joining Hello Monday again this evening. Let me share about my weekend.

On Saturday, my assigned staff supported me for part of the morning. We made a melt and pour soap in the shape of a heart. Sadly, I don’t have a picture and I gave it to my husband. I added gold-colored mica powder to the soap and lavender and ylang ylang essential oils.

I also created an essential oil blend for in my diffuser. I used pink grapefruit, bergamot and ylang ylang essential oils in this blend.

I did ask my assigned staff to inquire about my orthopedic shoes. This has been an issue for at least two years: I started out with supportive insoles, then an ankle foot orthosis either with or without semi-orthopedic shoes and finally now orthopedic shoes, but they still don’t fit. The shoemaker is frustrated, wondering when they’ll finally be good enough. Well, when they fit. Honestly, I am skeptical about the method they used to create an image of my feet: not using putty for a “mold” but using an iPad to create digital images, a method they’d used on a client of my care agency for the first time. My guess is this method requires some level of understanding I don’t possess but am assumed to possess based on my expressive language. Anyway, I don’t care how much of a bother I am, but I’m not accepting the reality as it is now, ie. my needing to buy new regular shoes every two months due to them being damaged from the way I walk. If they can’t fit me for orthopedic shoes, they’ve got to find a way to fix my shoe issue some other way.

Saturday was a good day overall. I was supported by two staff – my assigned staff and another – I get along with very well during the morning shift and my day schedule wasn’t disrupted. For the evening shift, three out of four staff were staff I don’t really get along with and I ended up being supported by two of them. I didn’t mind though, as my day schedule wasn’t disrupted and I did get to do some activities I enjoy.

On Sunday, my husband came by for a visit and we drove to Apeldoorn to have lunch at Backwerk once again. I had a tuna baguette. Then we went into several shops, because I wanted to buy some new spring/summer clothes. Sorry, no pictures once again. I bought a blue, flowery skirt and three simple tops in black, white and blue.

Sunday evening was a bit hard. It started out well with the staff explaining to me who would be supporting me throughout the shift. This was repeated several times. Then, at 6PM, unexpectedly a staff who wasn’t supposed to come and whom I don’t get along with, showed up. I had a meltdown and eventually, after a bit of an explanation from the other staff and trying an activity for a few minutes, I chose alone time over time with him.

I also spent my weekend working on the #AtoZChallenge, of course. I don’t generally prepare my posts in advance, so I have lots of work to do on the day itself. I also discovered Reddit last week. That is, I had an account back in like 2008, but they changed things up a lot so that’s no longer valid. I love browsing Reddit now and commenting where I can. I haven’t created a post yet.

Overall, my weekend was mostly good with some negativity due to the unexpected staff change. For those not aware, I am autistic, so it isn’t just that I don’t get along with some staff, but if they’d told me in advance, I could have been prepared.

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

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.

March 2023 Reflections #WBOYC

Hi everyone. It’s the last day of the month and this means I’m reflecting back on this month’s happenings. I’m joining What’s Been On Your Calendar? (#WBOYC). Here goes.

This month would have started with my having the meeting on my care on March 2, but it got postponed yet again for the third time. I did get a visit from my mother-in-law instead and we took a walk through a nice park. Here are a couple of pictures my mother-in-law took with her phone of a remembrance stone we saw there.

The next Sunday, my husband and I drove to Ikea in Zwolle, where I bought a stuffed orang-utan. I so far didn’t show it on the blog yet, so what better day to do this than today?

On the other Sundays, my husband and I drove to Apeldoorn to have lunch at Backwerk. We did try visiting another lunch cafe once at the recommendation of one of my staff, but literally all tables were dirty.

On March 17, I finally had the meeting on my care. The positive aspect was that the powers-that-be will be looking for another, hopefully more suitable care home for me. The negative aspect is the fact that, in the meantime, nothing will change. This had me spiral out of control quite a bit, which my staff feel frustrated with.

Last week, it led to a bit of a disagreement between me and my assigned staff, because she got frustrated with my negativity. The way she worded it, even if my day schedule doesn’t get disrupted and I’m supported by regular staff for the entire shift, I still find a reason to complain. I countered that this hadn’t happened in months. Even this morning, with three out of four staff being regular employees, the fourth staff supported me for most of the shift.

In the health department, I did pretty well. I finally saw the dietitian last week and we concluded I no longer need to lose weight. Not that weight loss ever was a priority for me, more like a welcome side effect of my healthier-for-me lifestyle. The fact that I’d lost weight rather rapidly over the past five months, meant I had to up my calorie intake to prevent further weight loss. I did gain a bit of weight in the first week on my new food plan, but then again I did eat fries once in that week and a large burger another day. I’m not stressing about the weight gain at all.

In other health news, my cardio fitness level according to my Apple Watch has declined slightly and is in the “low” range again, though just barely. My heart rate recovery, on the other hand, is steadily improving.

All this being said, I’m trying to embrace my body as it is and appreciate my health for what it is.

In the blogging department, I did quite poorly, having written only eleven posts including this one. I am not sure how I’m going to do with the April A to Z Challenge given this reality, but I trust I can do it.

#WeekendCoffeeShare (March 25, 2023)

Hi everyone. I’m joining #WeekendCoffeeShare today. It’s past 9PM on the night before daylight saving time sets in, so no coffee for me. I just had an apple-and-cherry flavored Dubbelfrisss with my meds and a small bag of chips. I normally have those at 8PM on Saturdays, but was upset then. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d complain about the weather. Oh wait, how’s yours? Ours has been rainy and chilly for spring. I want sunshine!

If we were having coffee, I’d share that I’ve been struggling a lot over the past week. I was in a crisis on several occasions. I will spare you all the details but I’m not proud of my behavior. The triggers to my severe outbursts involved disruptions to my day schedule and unfamiliar temp workers being placed with me for my one-on-one support. However, I must admit I’ve been on edge almost all the time even when there were few disruptions to my day schedule. For example, today I got upset because my laundry was put through the washing and drying process twice and this means I haven’t been able to change into my pajamas yet, something I normally do around evening med time at 8PM. In this sense, I understand my assigned staff’s saying yesterday that even if there are no disruptions to my day schedule and I’m supported by super familiar staff all day, I still may get upset. Which, by the way, wasn’t the case today, but we got as close as possible: a familiar staff supported me for half the morning shift and from handover at 3:15PM up till dinnertime at 5PM. For which, by the way, I explicitly thanked said staff. I’m pretty sure I’ll hear that because I got upset at 8PM for a minor reason, by which time a relatively new staff was supporting me, apparently familiarity of staff isn’t the issue. And indeed, there is probably nothing that will prevent me from getting upset altogether, but that doesn’t mean that nothing can be done to prevent the most severe of crises.

If we were having coffee, I would tell you that I finally saw the dietitian on Wednesday. She’s the same dietitian I saw in my old care home. I had a good talk with her and the absolute best news is I no longer need to lose weight! Not that this ever was the goal to begin with, but I was obese when I started my healthier lifestyle journey with her in January of 2022. Now I’m at a healthy BMI. The dietitian made some recommendations for me to change my diet to get me from losing weight to weight maintenance. She’s also trying to talk my staff into getting me to choose my dinners from the meal service menu again, but I haven’t heard about that so either my assigned staff said no or that’s still up for debate. The reason the dietitian is trying to get me to choose from the menu is the fact that I’m quite a picky eater and, when I don’t like something, I’ll usually skip it and not be sure how to replace it. My eating disorder voice also often chimes in, saying that the fewer calories I eat at dinner the better.

If we were having coffee, lastly I’d tell you I upped my movement goal on my Apple Watch from 300 to 330 calories per day. It’s a bit of a challenge to reach it, particularly now that the weather hasn’t permitted long walks most days. I did go on the stationary bike once (and planned on going onto it several more times but you know how it works with motivation to exercise). I did surpass my goal each day though.