The Downside of Praise

Posted on by Astrid

As a child, I was often praised excessively for my achievements. I remember one day, when I did calendar calculation at a family get-together, calculating what day of the week May 3, 1327 (for example), was, my mother exclaimed: “She’s sublime, she’s a genius!” For those who don’t know, many autistic or otherwise developmentally disabled people, including those with lower measured IQs, have this skill as what is stereotypically called a “splinter skill”. Now don’t get me started on the ableism of the term “splinter skill” when applied to people with lower measured IQs, but calendar calculation alone definitely doesn’t make someone, anyone, a genius.

And just so you know, it’s incredibly counterproductive to praise a person for who they are rather than what they do. It is usually better to praise someone for their achievements by naming those achievements as well done rather than praising the person themself. Moreover, any excessive praise, even if you say “you did an awesome job calendar calculating”, can be taken the wrong way.

Besides, many people feel they are praised for something that doesn’t reflect their personal values. For example, when I am praised for completing a personal care task, all I see is pressure to be able to do it independently the next time too. When, however, I am praised for creating something nice out of polymer clay, for my writing or the like, I feel like I’m valued for my contribution to the world.

There is, or so I’ve read, some school of thought that says any praise, whether person-centered or accomplishment-based, should be avoided by parents or carers. This doesn’t mean parents or carers should completely ignore their child’s achievements. Rather, simply pointing them out and engaging with the child about their achievements, will, according to these people, help the child develop a healthy sense of self. Honestly, I am inclined to agree with this.

It’s Just Us, Or Is It?: Power Dynamics in Care

Posted on by Astrid

I am currently reading a book called The Dark Side of the Mind by Kerry Daynes, a memoir by a female forensic psychologist in the UK. In her first chapter, Daynes writes about how her college date tells her there’s no justice, it’s just us. Then she goes on to talk about her first job, which is really an unpaid position, at a correctional facility called Wakefield. There, the philosophy is “us vs. them”, “us” being the “good” guys (or girls), ie. the staff, and “them” the inmates, who often committed horrific crimes, such as rape, murder or both. This “us vs. them” mentality was often used to reinforce a rather exaggerated power dynamic, to say the least. As it turns out, it’s not that black-or-white, in that, several years later, a staff member Daynes worked with was given a long sentence for similar horrific crimes.

I want to use this example to talk about power dynamics. Not in the prison system, as I have no experience with that, but in the care system. In a sense, in care, at least as much so as in prison, there should not be “us” and “them”, since we’re all people first. The mere fact that I am disabled and my staff are currently non-disabled, shouldn’t make a difference. Neither should it when it comes to my fellow residents who are deemed unable to make their own decisions.

I just had a discussion with one of my staff about this. This person maintains that she’s in fact at my service, almost like I’m her employer. When I pointed out that she gets to decide when it’s necessary to physically drag me to my room (not that she personally ever has), she said this is because I live with nine other people. Yes, but if I lived with nine other people without staff, such as in student accommodation, no-one would be dragging me to my room for yelling and, if the situation did escalate too much, the police (who everyone except for maybe the police themself admits have a position of power) would be called.

I also mentioned some situations from the intensive support home. For example, staff grabbing a large cookie while giving us a tiny biscuit. “Who’s boss here?” one of the staff once actually asked one of my similarly opinionated but unfortunately less eloquent fellow residents. She named the names of the support coordinators. “And when they’re not here?”, he continued, clearly wanting to hear that the available staff are. I pointed out later that no-one is boss here, only to be told that this was a simplified way of explaining this to my fellow client.

When I told my current staff about this and other examples, I was told this is the way the intensive support home works and that she doesn’t agree with it. At the same time, she told me that, if I want a large cookie, I can get it because I’m capable of making my own decisions, while my fellow residents can’t. While I understand this, on a large scale, may be so, it isn’t necessarily true: I don’t technically follow my agreed-upon food plan either and that’s considered my responsibility, while if a fellow client points to a single extra cookie, that’s denied because their family (or the staff) agreed on a food plan. However, if I have an extra cookie, it will do the same for me as it will for another person (unless said cookie has allergens in it for the other person or whatever). I wanted to raise awareness of how, on a micro level, staff, including the staff who believe they’re at our service, are exercising their power more than they should be.

Power dynamics, for clarity’s sake, cannot easily be eradicated. Nor am I absolutely sure they should be. However, those in positions of power should be extra conscious of their position. And especially when it comes to situations in which they believe they have every rhight to make decisions for another person, such as when I got dragged to my room and when the staff decide another resident cannot have a large cookie (but said staff and I can).

#WeekendCoffeeShare (September 16, 2023)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. I just had my afternoon coffee, but will probably not finish this post in one go, as I have an activity moment again in half an hour. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. We’ve had pretty nice late summer weather here with temps rising to between 20°C and 25°C during the day. Next week, we’re supposed to get rain and then I’m pretty sure it’s over with the warm weather, although October can occasionally bring days when the temperature reaches 20°C too. I love telling tales of the day, about five or six years ago, when we had a daytime high of 27°C here in mid-October.

If we were having coffee, then I’d talk about my walking and other exercise. I went swimming on Wednesday. It’ll probably have been the last time for now, as I’m moving to the new care home on Monday, although the swimming instructor did say my new home’s clients go swimming too.

I went on the stationary bike yesterday. Other than that, my physical activity has been hit and miss. Some days, I got in over 10K steps, while on other days, I hardly walked at all.

If we were having coffee, I would however share that, on one of my walks, last Tuesday, I visited the institution petting zoo and took some lovely pictures. The first picture shows the petting zoo’s cat, Macho, on a stack of hay.

There also is a large aviary with parakeets in it. Here are two photos of the birds in their cage.


If we were having coffee, finally I’d tell you all about my visit to my new care home. I went there with a staff and my mother-in-law. Since this staff has been pushing me towards independence more than I can handle lately and since she’ll be doing handover too, I was disappointed that she’d be attending the visit too. After all, that’d mean I wouldn’t be able to talk to my new staff about my needs without her overhearing.

When we got to the home, we were greeted by the man who will be my new assigned staff, same one who’d been talking to my mother-in-law about the color paint on my wall. I had thought he’d be my support coordinator but apparently not. I don’t know who my support coordinator will be yet. Not a problem, since in general you have more day-to-day contact with your assigned staff than your support coordinator. When still outside, I heard a loud singing of “Happy Birthday!”. This turned out to come from the neighboring home though, as no-one had a birthday this day.

We were led into the living room, where a number of residents and another staff were having coffee. I initially thought there were two staff, since one of the residents talked in an almost identical voice and said almost the same things as the staff. This turned out to be echolalia though.

The residents in this home are more significantly intellectually disabled than those at my current home. Most can speak a little though. Like, one told me I had a pretty golden ring. When I told my spouse about this, I was reminded of my preference last year for a home with people with mild intellectual disability. Yeah, I replied, but I didn’t know back then what I had to give up to live with people with whom I can have a conversation.

Overall, the staff seemed much nicer than those at my current care home. For one thing, both staff introduced themselves, while back when I went to look around here last year only the staff who would be giving me the tour told me their name.

I was led to my room, which is the closest to the living room. This has disadvantages, in that I may be able to hear living room sounds more, but it has a huge advantage in that I will be able to find it much more easily than my current room. The wall is a nice baby pink according to my mother-in-law. I wasn’t able to get a real impression of my room without my furniture in it yet, but that’s not a problem.

When shown around, I did make it clear what my needs are re help with my activities of daily living and that I’m not ready to grow yet, since that will take me being stable first. The staff who was with me didn’t comment, thankfully. Overall, I feel less stressed about moving to the new home now that I’ve met my new fellow residents and staff.

I have yet to pack my clothes. Other than that, everything is in boxes now and ready to be moved. I’m ready for a new chapter in my life!

ZZZ: Sleep Issues in People With Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone. Almost every year, my final post in the #AtoZChallenge is about sleep or “ZZZ”. This year is no different.

Sleep problems can affect anyone, disabled or not. However, sleep disorders, including sleep apnea (sleep-related breathing disorder) and insomnia, are more common among people with intellectual disabilities than among the general population. In fact, one review found that as many as 31% of adults with intellectual disability experienced more than one sleep problem. More severely intellectually disabled individuals, those with certain genetic syndromes and those with comorbid neurodevelopmental disorders such as autism, are at particularly increased risk of having more sleep disturbances.

Sleep problems can cause physical and mental health problems in intellectually disabled people just like in the general population. However, they can also contribute to challenging behavior.

There are many factors associated with sleep problems in intellectually disabled people. For example, those with comorbid autism and/or ADHD are at increased risk of having sleep disturbances. Those with certain genetic syndromes, too, may experience certain sleep disorders. I mentioned sleep apnea already in my post on Down Syndrome. People with Smith-Magenis Syndrome, on the other hand, often experience an inverted circadian rhythm.

Environmental factors also need to be considered. For instance, a care home may not be ideal for people with intellectual disabilities to sleep properly due to for example night staff checking on them frequently. This does not happen here. What happens here rather frequently is the reverse, staff leaving clients to “rest” in a sensory room or their bedroom during the day.

The management of sleep disorders in people with intellectual disabilities is somewhat similar to that in the general population. However, more care should be taken to rule out medical conditions such as epilepsy or sleep apnea as the cause for poor sleep. The only medication which is somewhat effective for sleep issues in intellectually disabled people, is melatonin.

Now it’s 10PM and I’m ready for bed myself, I guess.

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.

X-Linked Genetic Intellectual Disability #AtoZChallenge

Posted on by Astrid

Hi everyone. I can’t remember whether, in my post on the genetics of intellectual disability, I mentioned the difference between autosomal and X-linked genetic causes of intellectual disability. Autosomally genetic conditions are those that are present on one of the autosomes, or non-sex chromosomes, the chromosomes 1 till 22. These present equally commonly in those with two X chromosomes (typically assigned female at birth) as in those with an X and a Y chromosome (typically assigned male). X-linked conditions, on the other hand, present more frequently in either of those groups depending on whether they are recessive or dominant.

An example of an X-linked recessive intellectual disability syndrome is Christianson Syndrome. This affects primarily people assigned male at birth because of their XY chromosomes. After all, recessive means that, if a person has an unaffected copy of the X chromosome, that will be dominant and the person (usually assigned female, XX chromosomes) will not have the condition.

At my former care home, there was a man with Christianson Syndrome. He was in his late fifties, which is really old for someone with the syndrome. He, like everyone with the condition, has an intellectual disability. He also has ataxia, although he at least when I still lived there could still walk, unlike most adults with this syndrome. According to the staff, a lot of things made sense now that they knew that he had this syndrome, even his obsession with electronics.

An example of an X-linked dominant intellectual disability syndrome is Rett Syndrome. This only affects people with two X chromosomes (usually assigned female at birth). Fetuses with XY chromosomes and a Rett Syndrome mutation on their X chromosome, will usually be miscarried.

At my old care home, there was another client with Rett Syndrome. I did not know her well though. Rett Syndrome children develop typically until at least six months of age and then regress. They will develop autistic-like behaviors, although social interaction may develop later on. Another typical feature of Rett Syndrome is the loss of hand function. People with Rett Syndrome will usually have involuntary, repetitive hand movements. I do know the client at my old care home loved to play with sensory toys, but I do not know whether she could purposefully manipulate them.

Another syndrome I need to mention is Fragile X Syndrome. This is an X-linked recessive condition, but it does affect some people with XX chromosomes, albeit more mildly. There is also a so-called “premutation”, which is associated with some Fragile X-linked problems later on but not the full syndrome. This “premutation” is differently inherited depending on the sex of the carrier and may lead to a full mutation (Fragile X Syndrome) in their children.

Work: Employment and Day Activities for People With Intellectual Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter W post in the #AtoZChallenge. Today, I want to discuss work and day activities for people with intellectual or developmental disabilities.

People with a mild intellectual disability and no additional problems can often work paid jobs that would otherwise be performed by typically-developing adolescents, such as filling shelves in a supermarket or being waiters in a restaurant. They may not be able to complete all duties required for these jobs, but in the Dutch system, if you can do a task that is part of a job and have minimal employee skills (such as coming on time, respecting authority, etc.), you are expected to join the mainstream workforce. I, thankfully, have not been judged to meet these criteria, but then again I’m lucky in that I’ve been on disability benefits since 2004. A few years back, I heard of a profoundly and multiply disabled woman at my day center who somehow was judged to meet the criteria. The work specialist had probably never seen her, as they said she could do simple manual labor, while she had severe spastic quadriplegia.

Alternatively, there are sheltered workshops for people who can work, but need to do things at a slower pace and need some more support than can be reasonably expected within the mainstream workforce. However, these workshops have been facing significant budget cuts.

When this, too, isn’t an option, you enter the world of day activities. Those still can be “work-like”. In fact, most day activities for more cognitively capable intellectually disabled people simulate a work environment. Some of these activities are truly meaningless, in that the staff will let clients fill the same boxes with a number of items repeatedly only to empty them again so that the client can fill them once more. I honestly have very strong opinions on this: if it’s truly what a person wants and there’s no way of making the activity actually meaningful, I’m fine with it. Otherwise, I don’t see why day activities need to be “work” and things like crafting or music can’t be day activities for more cognitively capable individuals.

For more severely disabled individuals, day activities are usually sensorially-based. This includes snoezelen®, which is being in a room where the sensory environment can be completely controlled to suit the individual’s needs. I actually love this, although only for about 30 minutes at a time.

Other activities include cooking and baking, with which the clients usually don’t really help (although some moderately disabled people can) but will experience the sensory stimuli associated with the process. For example, I used to attend a group for profoundly disabled individuals and, when we’d bake something with apples in it, the staff would massage the clients’ arms with an apple. Music, story time, and simple crafts are also common activities for this population.

I, personally, if I had to choose a day activities setting, would choose the one for more severely disabled people. I know I can’t really function in a group setting, which is why I’m stuck at the care home for now, but I honestly have zero interest in meaningless labor.

Visibility of People With Intellectual and Developmental Disabilities in Mainstream Society #AtoZChallenge

Posted on by Astrid

Hi everyone. I’m really late writing my letter V post in the #AtoZChallenge. I am not too excited about today’s topic either, but that might change as I write. I just came up with it two minutes before opening the new post window on WordPress. Today, I want to talk about visibility of people with intellectual and developmental disabilities in mainstream society.

Until the mid-1990s, individuals with intellectual disabilities were routinely institutionalized on grounds like mine, sheltered away from the general public. While there are advantages to this, it did mean the general population hardly saw any individuals with intellectual disabilities, especially not adults or those with more severe disabilities.

In the 1990s, institutions were often demolished altogether and individuals with even the most severe disabilities were moved into the community. This, however, did little to help society be more accepting of people with intellectual disabilities.

Now, with “suited education”, which was introduced in the mid-2010s, individuals with disabilities are encouraged to attend mainstream education if at all possible. This means that more people with mild intellectual disabilities and other developmental disabilities, who would otherwise attend special ed, are now in regular classes.

I, having been forced into mainstream education with very few accommodations, am not a fan of “suited education”. My opinions on deinstitutionalization are mixed. While I do feel that we need to be allowed to be visible in mainstream society, I do not feel that this is a case of the disabled needing to assimilate or be “normalized”. Truthfully, I do not feel that we need to prove our right to exist beyond the margins. That being said, the reality is that society doesn’t want us. At least, it doesn’t want me, a high support needs autistic and multiply-disabled person. When I still ventured out into the world on my own, I had just a little too many encounters with the police that often weren’t pleasant.

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.

Self-Injurious, Aggressive and Otherwise Challenging Behavior in People With Intellectual or Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter S post in the #AtoZChallenge. Today, I want to talk about self-harming, aggression and other challenging behavior in people with intellectual and developmental disabilities.

Some people erroneously believe that challenging behavior is an intrinsic part of being intellectually disabled. It isn’t. Neither are self-injurious or aggressive behaviors an intrinsic part of autism. These behaviors, however, do happen more often among people with intellectual and developmental disabilities than among non-disabled people.

The causes and reinforcing factors of challenging behavior are often complex. And though I mention them in one sentence, no, a reinforcing factor is not the same as a cause. Furthermore, if removing a reinforcing factor seems effective at reducing or eliminating the undesired behavior, this does not mean the problem is all solved. After all, especially people with intellectual and developmental disabilities who are at a lower emotional level of development or who struggle with communication are at risk of suffering in silence.

It may be tempting to presume motivators behind challenging behavior that are commonly believed to apply to typically-developing young children, such as attention or “getting their way”. Presuming these motivators, even correctly, is not taking into account the fact that people with intellectual and developmental disabilities are firstly not (necessarily) young children. Secondly, you need to realize that, like all people, they have a need for autonomy and attention and many, especially those living in institutions, are heavily lacking in both.

There are, of course, many other contributing factors to challenging behavior. For example, physical discomfort or pain may be a factor for some, especially those with profound intellectual or multiple disabilities. Others may have experienced trauma and struggle with attachment. I for one have relatively mild attachment issues (at least as apparent in my behavior) compared to some of my fellow clients, hence why I always get stuck with the temp workers. This of late has been causing me a lot of distress and has led to significant challenging behavior, which unfortunately for me isn’t significant enough to warrant any changes. Then again, if it did, those changes might well constitute restrictive measures.