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

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

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

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

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

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.

The Wednesday HodgePodge (April 26, 2023)

Hi everyone. It’s been a few weeks since I joined in with this meme, but today’s questions for the Wednesday HodgePodge appeal to me. Here goes.

1. April 26th is National Audubon Day, honoring John James Audubon, the French-American ornithologist, naturalist, and painter known for his detailed study and illustration of birds in their natural habitats. Do you have a bird feeder? Any birds in your home decor? Have you ever owned a pet bird? What’s your favorite bird?
I am pretty sure there’s a bird feeder on my terrace, but I didn’t place it there. It was here from before I moved to my current care home and I don’t place bird food in it either.

I don’t have any birds in my home decor, though I do like birds. I’ve never owned a bird as a pet, though one of my fellow residents does currently.

My favorite bird? My first thought goes to the blackbird. I am not really sure why though, as truthfully black isn’t even my favorite color anymore (and I have no idea whether blackbirds are actually black). I do like its sound though.

2. What’s something you took to “like a duck to water”?
Blogging for sure.

3. Empty nest, nest egg, proud as a peacock, free as a bird, birds of a feather flock together, or the early bird catches the worm…choose one and tell us how it currently applies to your life.
I’ll go with “empty nest”, even though none of these expressions really apply to me. I mean, I had to Google “nest egg”, but that’s unrelated to my life too. As a childfree person, I don’t think “empty nest” applies to me either, as I never even had eggs or young in the nest, but oh well. I do feel lonely and bored with not living with my family.

4. Pumpkin seeds, sunflower seeds, flax seeds, chia seeds, sesame seeds, poppy seeds…your favorite seed and a favorite food or dish made with that seed or topped with that seed? Have you tried all the seeds on the list? Any you don’t care for?
Yes, tried all of them and love them all. My favorite are chia seeds and I use them in my overnight oats as well as in my smoothies. I also used to always buy poppy seed bread when I lived at the independence training home (basically regular bread with poppy seeds on its crust).

5. Something in the past week that made you “happy as a lark”?
Nothing really. I have been quite depressed lately, but the visits from my mother-in-law yesterday and my husband on Sunday were a welcome distraction.

6. Insert your own random thought here.
I’m off to try out the giant trampoline here at the institution in about half an hour. That hasn’t yet made me happy, but it’s definitely something I’m looking forward to. The physical therapist has to go with me to see how I do it, but he’s hoping it will help me loosen up my muscles in my back.

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.

How I Like to Spend My Weekends

Hi everyone. Today I’m participating in Sadje’s Sunday Poser. She asks us whether, on weekends, we like to relax at home or prefer to go out. Since I prefer a combination of both, let me share how I usually like to spend my weekends.

On Saturday, most weekends, I stay at the institution (I still can’t really bring myself to call it staying “at home”). My day schedule isn’t any different then from other days, except that we get a treat with our coffee and soda and chips in the evening. I don’t tend to lie in on Saturdays either, because I feel it’d disrupt my circadian rhythm. Which, to be honest, is quite disrupted as it is from the naps I do take. This is not just a Saturday thing though.

Like I’ve probably mentioned before, my day schedule consists of activity slots intertwined with times when I don’t have support. During my activity slots, I usually go for walks, play card games or occasionally do some crafts. During my times without support, I prefer to chill out on my bed with some music on (which usually leads to me falling asleep) or to read.

Sundays are the exciting part of my week, as my husband then visits me. He generally arrives here at around 1PM. Most weekends, we drive to Apeldoorn to go to Backwerk, where we eat a sandwich or baguette. We also usually take a stroll through the city and go to Hema, a department store which is my husband’s favorite. Sometimes, we’ll go to other stores too. I usually arrive back at the institution at around 3:15PM.

Every once in a while, I’ll go to Lobith to spend the weekend. Usually in that case, my husband picks me up on Saturday at around 3PM and I am back at the institution on Sunday around noon. Even though I usually take my laptop with me, lately I haven’t really used it at all, as we were so comfortable relaxing on the couch together that I didn’t feel a need to retreat upstairs.

As for what I prefer, I really wish there were some difference in my day schedule between weekdays and weekends, but this somehow isn’t possible. Other than that, I like the combination of relaxing in my room and going out with my husband.

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

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.