Gratitude List (May 6, 2023)

Posted on by Astrid

Hi everyone on this first Saturday of May. I’m joining Ten Things of Thankful (#TToT) for a gratitude post today. Here we go.

1. I am grateful for a trip to buy some new plants for in our care home garden last Saturday. One of the student staff had been planning on us having a vegetable garden here. While that’s not exactly gone to plan, we do have a few flower beds and some space for vegetables too. I loved helping pick out the first few flowers and plants.

2. I am thankful for new duvet covers. My husband last week told me he needed new ones for our bed in Lobith. Too bad twin bed duvet covers don’t come in cute colors, but those for my single bed do. I got one with rainbows on it and one with butterflies on it.

3. I am grateful for sleep. I have been able to sleep reasonably well over the past couple of days.

4. I am grateful for some success with physical therapy. The physical therapist came by on Wednesday to try to do some yoga exercises with me in order to help me loosen up my muscles. It was hard but rewarding. I am grateful my assigned staff said I can have a staff member with me during physical therapy even when it’s not during my allocated activity time.

5. I am grateful for nice weather on Thursday. We hit 20°C for the first time this year that day.

6. I am grateful for no thunderstorms that I was aware of yesterday. A lot of rain, hail and thunder had been predicted, but thankfully I was indoors when it rained and, insofar as we got any thunder at all, it was far enough away not to make me startle.

7. I am thankful for a lot of compliments on my skirt and shirt that I wore on Thursday. These aren’t really suited to the colder months (unless I find panties or leggings that will go with the skirt, but I only have black panties now). Most clients really liked my outfit. I bought both the skirt and shirt relatively recently.

8. I am grateful for ice cream. On Thursday, two staff took me and another resident to Deventer, the nearest city, to get ice cream. We originally intended to go to a place that’s supposedly really good, but couldn’t find a space to park near there, so decided to go to Talamini, an ice cream chain that’s good too. I had caramel and Kinder Bueno, a candy bar flavor, on a cone. Unfortunately, I did get the ice cream all over my skirt, shirt and into my hair.

9. I am grateful to have been supported by my assigned staff more than usual lately. She also makes it clear that it isn’t like she’d been avoiding me, but that, with all the chaos and crises among other clients and her being a regular employee here, it just isn’t always possible for her to support me regularly.

10. I am thankful I haven’t lost all hope yet. Sometimes, it feels like it, but I am glad I can still appreciate the little things in life.

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

Posted on by Astrid

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.

Currently (May 2023)

Posted on by Astrid

Hi everyone. I remember joining in with Currently every once in a while way back many years ago, but then the person who used to host the meme discontinued it and I never found it again. Now, I’ve rediscovered it. The Currently linky is a meme in which we share what we’re currently up to based on five monthly verb prompts. Here goes.

Loving:
First up is smoothie making. I am loving experimenting with ingredients, such as instant coffee and cocoa powder. One smoothie, in which I added just a little (or a lot!) too much instant coffee, turned out rather bad. One of my fellow residents still claimed she loved it though. We’re not officially allowed to give each other things, but since I just can’t make just one smoothie serving and she’s the one who enjoys my smoothies most, I make sure to consider her first when I have some left over.

Next are my tactile dice. I had and probably still have them at my and my husband’s house in Lobith but they’re probably down in some junk closet, so I decided to order new ones. I have been loving playing the game of yahtzee with the same fellow resident.

Picturing:
I will be going clothes shopping with my staff tomorrow and am kind of imagining how that will be going, both positively and negatively.

Craving:
I just had lunch when I started writing this post, so nothing at that moment. Now that I’m finishing up this post at 3PM, I’m craving white chocolate. I just hit my lowest weight since my wedding (in 2011) this morning and am really pleased with it though.

Wishing:
To find a more suitable care home. It’s been really hectic here at my current care home and I’m pretty sure the powers-that-be are testing my limits. For those visiting from the linky: I reside at a care home for people with mild intellectual disability and significant challenging behavior. I am supposed to get one-on-one support for most of the day, but this often doesn’t happen because others need or are supposed to need more care. I finally got the okay to be looking for another care home last March, but of course this can be a long process.

Collecting:
Smoothie recipes, of course. I downloaded several smoothie recipe collection books off Bookshare, the accessible book service for the blind or dyslexic. I don’t have all the ingredients for any one smoothie, unfortunately, but like I said, I’m trying to experiment.

Share Your World (May 1, 2023)

Posted on by Astrid

Hi everyone. I’m really wanting to continue my blogging streak and, even though I have a lot I could still write about, I don’t feel like writing a long blog post. Instead, I’m joining Share Your World. Here goes.

1. The First of May is a Bee Gees Song.

Do you like the Bee Gees and if so, what is your favourite track?
I had to look up the group on Spotify to know what they produced, but my hunch was I couldn’t stand them. Indeed, they’re the ones behind Stayin’ Alive, More Than a Woman and other equally annoyingly-sung tracks. So no, I’m not a fan.

2. What was the first record (single or album) you bought?
I would like to say an A-Teens (ABBA cover band) album, as that’s what I listened to most, but probably it was the 1999 album Urban Solitude by Anouk.

3. Do you know what was top of the charts the day you were born?
I had to look it up and checked the number one in the top 40 for my birth week in the Netherlands too just to make sure it wasn’t completely different. It was On My Own by Patti Labelle and Michael Mcdonald. It’s another song I cannot stand.

4. Do you and your partner have a “special tune”?
No, not at this point. Our taste in music tends to develop together though: when we first were dating, we were both into Irish folk. Then came Tom Lehrer. Then followed German schlager and truck driving songs. Then punk (or that was before the schlager and trucking songs, I can’t remember). Then more recently country. Now we’re both into pop. I am more into dance too, as I don’t really listen to music just for its lyrics.

Gratitude:
Music has no hidden agenda, it can inspire, soothe and calm.
I agree wholeheartedly, although I must say people can misuse the idea of music. I mean, staff often tell me to “just” put on some music when I’m distressed. It can definitely help and I won’t deny that, but it’s no cure-all.

To end this post on a positive note, I am going to share one of my favorite songs to dance to.

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.

The Wednesday HodgePodge (April 26, 2023)

Posted on by Astrid

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.