#WeekendCoffeeShare (July 17, 2026)

Posted on by Astrid

Hi all! I’m joining #WeekendCoffeeShare once again. It’s now 7:30PM, so I’ve had my last cup of coffee for the day. I need to take a shower in about half an hour, so will let my post sit for a bit then and return after I’ve had my medication and evening soft drink. Feel free to grab a cup of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. We were supposed to get another heatwave here this week. Thankfully, it wasn’t that bad, but only barely so. It’s incredibly dry though. Here’s hoping for rainy weather soon.

If we were having coffee, next I’d tell you I won’t be having a perfect month with respect to my movement goal on my Apple Watch. It’s not necessarily because of the weather. Rather, last week Wednesday, I stubbed my toe and it led to a small fracture. The staff who was here when it happened (in fact, I stubbed my toe on his shoe) initially thought it was just bruised. Unfortunately, I took this to mean I shouldn’t be nagging even though the next day and the next and over the weekend, my toe hurt like crazy. I ignored the pain and kept walking. Then on Sunday, the pain was so bad that I could barely walk outside at all, so the staff who was with me at the time, said we should ring the GP on Monday. The GP’s nurse practitioner came by on Tuesday and said I probably suffered a small fracture indeed. Since it’s my little toe, nothing can be done, but she did give me naproxen for pain relief. It’ll likely take several weeks for my toe to fully heal, but next week, hopefully I’ll be able to get by with just paracetamol.

If we were having coffee, then I’d share that I had a meeting with the behavior specialist, team leader, my assigned staff and support coordinator yesterday about the moving plans. It turns out they have no plans of actually kicking me out against my will. They just believe, like the substitute behavior specialist said about a month ago, that a place for people with brain injury may be more suitable for me. Whether finding me a suitable place is possible given my current care profile and the extra support hours etc., will have to be determined. It’s all quite scary, but I’m not as scared as I was before I had this meeting.

If we were having coffee, I’d tell you I also had a meeting with the intellectual disability physician on Monday. I went down another 1mg of my antipsychotic. I’m now on 6mg of aripiprazole. I can’t believe I was at one point, for many years in fact, taking 30mg.

We also discussed my getting access to my medical records. Thankfully, she gave me permission. The GP will have to sign me into the system though.

If we were having coffee, I’d share that I didn’t cook last Saturday or Wednesday, but I did make another batch of granola on Wednesday. The reason I didn’t cook is the fact that I reasoned it’d be too hard for me given the stress of the two meetings I had. All this being said, I did help with preparing my own lunch by cutting up the vegetables I usually have as a side a few times. This was a good experience.

If we were having coffee, I’d share I did engage in a few creative activities over the past week. One involved making polymer clay earrings. The finished project didn’t satisfy me, but the process was fun.

I also created another unicorn-themed chalk pastel drawing. Can’t remember whether I shared this before, but one of the staff is incredibly creative and she at one point came up with this idea. I used a template for drawing the unicorn and of course I know my six-year-old niece can probably do it better than I can, but who cares? I’m more and more appreciating the fact that I can do something rather than focusing on what I can’t compared to non-disabled people.

This brings me to another creative adventure: photography. I’m hoping to soon take more pictures and to actually share them on the blog. I in fact subscribed to a few blogs that have photo prompts and am liking them a lot. I really would like to expand my creative horizons.

First Steps in Finding a (Truly This Time, I hope) Suitable Care Home

Posted on by Astrid

Hi everyone. It’s been a full week since I last wrote a post on this blog. This week has indeed been full. Not necessarily in that anything spectacular happened, but I’ve been hyperfocusing on the home-finding thing.

This is one reason I finally changed my tagline. I’d been annoyed at my old one for years, but could never think of a more appropriate one. Looking back, it should’ve been easy.

So here I am chronicling my complicated care-finding process. I have been looking up various options online and talking to people on Facebook. Specialist client support hasn’t contacted me yet even though they said they would do so this week. Here’s hoping they’ll contact me on Monday or Tuesday.

I haven’t spoken to the team leader or behavior specialist either. My trust is at a very low point and I’m half expecting this to go exactly like it went with my last several moves: not hearing anything for months until the powers-that-be have found a place they think they can send me to. Staff are saying I’ll have a meeting with the behavior specialist and team leader “shortly”, but they for whatever reason aren’t allowed to tell me when. One staff eventually said it’s on the 16th, but my trust is so low after all the comments that I’m not allowed to know etc., that I’m thinking he may’ve made it up to shut me up.

In the meantime, I am looking at possible new places to transfer to. I don’t want to end up in general psychiatric care again and doubt general homes for people with physical disability, vision impairment or brain injury can cope with my behavior. There are places for people with a combination of impairments, but these aren’t widespread. Like I said last week, staying in this area is no longer a top priority for me, but it’s definitely still on my list of things I hope for.

One thing that scares me, is the fact that I have a long history of being too complicated for one place yet not qualifying for another due to my needs not being (perceived as) significant enough. For example, when I lived independently, I kept being told that I “am not crazy enough” for a psychiatric admission, yet once admitted, I had to lie my way out of the locked unit because the open units couldn’t meet my actual needs. Similarly, I’m quite scared that I’m not severe enough for the complex care units and yet I know for sure that regular care homes won’t meet my needs, in that in those, you either have a physical disability or you have significant mental health or behavioral problems.

There is exactly one home in the entire country, if I’m correct, for people who are both visually impaired and autistic. Then again, I doubt it’s either of those disabilities that causes me the most significant problems. I think, and so did the substitute behavior specialist, that it’s my brain injury. Then again, thinking this creates another catch-22, in that my brain injury was the reason my autism diagnosis was at one point removed, yet I didn’t qualify for an acquired brain injury diagnosis either because I had my brain bleed and hydrocephalus in infancy. That’s how I ended up with borderline and dependent personality disorder diagnoses, neither of which truly explains my actual needs.

I can only hope that, in the nine years since I was kicked out of the psychiatric hospital because no place wanted me, I have accumulated enough evidence for my genuine needs that I can at least get sufficient funding. Then the next step is finding a home that will use the funding to meet my needs.

Wife #WotW

Posted on by Astrid

Hi everyone. No #WeekendCoffeeShare this week, so I thought I’d find another way to sum up my week. I’m joining Word of the Week. It’s often hard for me to pick just one word or phrase to summarize my week. This week’s is “wife”. I contemplated other words and phrases, like “divorce prep”, “stressors”, etc., but my wife is the one who’s pulled me through most of the stressors.

For those not aware, my wife and I, who have been best friends for over eighteen years and married for over fourteen, will be getting a divorce sometime in the next couple of months. The reasons are personal and mostly irrelevant, as we’ll remain best friends hopefully for life.

Last Monday, my wife found out that the practical part of the reason we didn’t go through with divorce when we were first deciding on it last year, isn’t likely relevant to us. This was a financial reason that I won’t go into. Suffice it to say that, when we saw the mortgage advisor on Tuesday, we found out that even in the worst case scenario, both of us will manage financially.

I do struggle emotionally with the idea of divorce and particularly the fact that our house will be fully signed over to her. Not that I ever lived in that house or that I’m ever going to again. Practically, it’ll make no difference, but it does feel kind of off that I’ll essentially be signing myself out of the opportunity to live in a “normal” house for life. Then again, in reality, I did this in 2019 when moving into long-term care.

On Wednesday, my wife and I established a pattern of multiple, long phone calls. That day we were on the phone seven times. I was struggling with feelings of self-hatred over the ways I’ve treated my wife poorly over the years. Particularly, I was struggling with the idea of emotional vs. cognitive empathy. I’m an emotionally sensitive person or so my wife says, but I still end up hurting my wife and other people regularly. I guess that’s me being autistic though.

I also talked to my wife about how I’m regularly being confined to my room for having meltdowns in the living room. I somewhat see the reason behind this, though not fully because my behavior scaring other residents, isn’t the full story (there’s also some part about my being presumed competent enough to hold it together). However, what I clearly don’t understand is staff’s inability and might I say regularly unwillingness to help me prevent having a meltdown. I’m still kind of struggling with the battle between autonomy and protection.

Yesterday, I was trying to figure out how to get to a cerebral palsy meeting in Utrecht next week. The restaurant the meeting is being held at, cannot be reached by ParaTransit taxis. I might be able to travel by train, but that’d be quite a challenge too. Again, it was my wife helping me make decisions. I’ll most likely not go to the meeting this time, but remain in the WhatsApp group so that I’ll get a feel for the other people attending and have more time to make arrangements. By the way, my wife and I had four phone calls and she said we’d better create a new pattern or we’d have to call each other a negative amount of times tomorrow (7-4-1-etc.). Maybe I’m wrong though, as my wife said the number of times we’d be calling each other had to be a prime number and four isn’t one.

How I Coped With Losing My “Job”

Posted on by Astrid

Hi everyone. This week, one of the prompts for Writer’s Workshop is to write an essay titled “How I coped with losing my job”. I don’t do well writing fictional essays and have never had a “real” job, in the sense of a paid position or even volunteer work. I did, however, once “lose my job”, in that I got told the day center I went to couldn’t keep me there anymore.

This happened sometime in January of 2018 at my first day center with my current care agency. They had had me there for eight months, in two different groups, but when I was struggling to cope at the second group, they could no longer serve me or so they said.

I felt really distressed about this. The most frustrating aspect was the fact that they blamed me for no longer being suited to the center, while in reality, three new clients had been accepted into my group and no additional staff had been hired. I remember the reason they said it was me being the problem, not the new clients, was the fact that I’d been having meltdowns shortly before they arrived. Now I know that any anticipated change will cause me distress and that doesn’t mean I’m just a problem client. However, in hindsight, I’m pretty sure they wanted me gone sooner rather than later all along, for the simple reason that I don’t have an intellectual disability.

Thankfully, I wasn’t told to leave on the spot, but got time to find a new place. I initially had no clue how to, but did remember that, in 2010, I had been helped by the Center for Consultation and Expertise (CCE). I told the staff that I wanted to involve them again.

This was a bit of a hassle, as my community psychiatric nurse from the mental health agency said I’m far too high-functioning for the CCE. I applied nonetheless and got an orientation meeting in May of 2018.

In the end, I didn’t need the CCE for finding a new day center, but the consultation was what led me to accept that living independently with my partner wasn’t working and I needed long-term care.

I did feel intensely frustrated, like I said, at being “fired” from this day center. However, in the end, I don’t blame the staff, who were just powerless in the face of my challenging behavior. I think the manager, who didn’t look beyond my psychiatric diagnoses, is partly responsible. So was the psychologist from the psychiatric hospital, who more or less made the manager accept me on partly false premises.

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

Posted on by Astrid

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

Posted on by Astrid

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

Posted on by Astrid

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.

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

Posted on by Astrid

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.

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.

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.