Reflections on Being a Thrown Away Golden Child

Posted on by Astrid

I’ve been struggling with memories lately, as well as with the role I played in my family. I was for the most part the golden child. For those not aware of what this means, this is the child in a family in which one or both parents are narcissists or otherwise emotionally immature, who ends up being the parents’ favorite.

My parents often half-jokingly (though it wasn’t funny) said that my younger sister was oh so nicely average. More like invisible, I’d say.

I, on the other hand, was exceptional in both positive and negative ways. I was a genius when doing calendar calculation, which for your information is a common savant skill in people with developmental disabilities. By contrast, I was threatened with being thrown away into institutional care and called all kinds of insults for people with mental illness when I was acting less than excellent. I at one point thought of printing out the table of contents for the DSM so that my parents at least knew the correct terms for what they were calling me.

Then, when I was admitted to the psychiatric hospital in 2007, my parents more or less actually threw me away. No, that’s not even entirely true: they threatened to abandon me when I announced that I was taking a second gap year in order to work on independence skills in 2006 and only came back into my life after the independence training home promised to prepare me for university and independent living. Which they couldn’t.

I struggle with both the fact that I was thrown away and the fact that I was my parents’ favorite before that. After all, it adds an extra layer of shame to my life: the layer of “if only…”. If only I hadn’t taken that second gap year… If only I hadn’t consented to being admitted to the psychiatric hospital… If only I hadn’t applied for long-term care… would I still be the hero… in my parents’ fantasy tale? In other words, isn’t it my choice to have fallen off my parents’ pedestal?

I don’t know how I feel about the idea that it might’ve somehow been my choice to be thrown away. On the one hand, I feel it makes me responsible for not having a “normal” relationship with my parents. On the other hand though, I know how many golden children turn out and that’s not pretty. Many end up repeating their parents’ toxic patterns with partners or children.

I’m forever grateful for being childfree for this reason (and others), as just today I had a memory of shoving my and my wife’s then cat Barry out of the bed. I feel forever guilty about this and the very thought of doing this to a child, makes me sick.

Remembering this and other things makes me realize I’m glad I didn’t stay in the golden child role. If I had, I might as well have ended up in prison… or should have.

September Dreams and Memories

Posted on by Astrid

Last night I dreamt of being admitted to the psych hospital. It’s no wonder, since the anniversary of my actual admission isn’t very far away, on November 3. September 23 is my anniversary of going into long-term care and last Wednesday, I celebrated one year in my current care home.

I was reminded yesterday that September is a bittersweet month. That is, I was reminded of the sweet aspect, ie. it being me and my spouse’s wedding aniversary yesterday. The bitter aspect has overshadowed my days with flashbacks and my nights with dreams more than I’d like. I am, thankfully, still coping.

I am hoping that, as I acquire more pleasant memories here at this home, the flashbacks and nightmares will lessen. I know I was saying something similar when reclaiming November in 2021. I hope this time around I will choose following my dreams and aspirations over re-enacting the past.

Sharing this post with Friday Writings #145, for which the optional theme is dreams and memories. This was more of a freewrite than anything else, but oh well.

The Wednesday HodgePodge (August 23, 2023)

Posted on by Astrid

Hi everyone. I’m joining the Wednesday HodgePodge once again. Here goes.

1. What’s your earliest memory?
My third birthday. My paternal grandma brought me a doll from Berlin and my father taught my sister and me the German word for “doll” (“Puppe”). My sister and I, of course, laughed really hard about this, as “Puppe” sounds just like the Dutch verb for “poo”. The doll, by the way, is named Roza, because my father also said Rosa (but then again, as a child I had no clue how to spell it) is a German name.

2. What’s something about you today that the old you would find surprising?
The fact that I live in an institution. Until I was about 25, living in an institution was my worst nightmare.

3. Do you like to fish? Are you a fish eater? Favorite fish (to eat)? Favorite way to prepare fish?
I’ve only been fishing once and found it intensely boring. Then again, I can’t see so that takes away what little fun I imagine there is to fishing.

I do like fish, but usually just the once with the not-too-distinct flavor. The only exception is tuna, which I love and would probably be my favorite fish to eat. When my sister turned vegetarian and showed my parents info about the unethical consequences of tuna eating, they for a while refused to buy it. I got really upset.

4. What’s your biggest first world problem?
I’m not sure whether my unsuitable care home counts as a first world problem. I guess it does, since most disabled people in developing countries don’t have a choice where they live at all. Neither do I at this point, in the sense that I know next to nothing about my future care home and am told that since I’m moving anyway it’d be pointless to give me more info. I have a post scheduled for tomorrow on this topic. In any case, I’m still fortunate in many ways I guess.

5. What one word would you use to describe your year thus far?
Chaos.

6. Insert your own random thought here.
I almost broke my record of active calories burned on my Apple Watch today. Honestly, I think relatively speaking I already broke it, since my last record dates from September of last year and I weighed 12kg more than I do now, so burned off more calories with the same physical exertion. I still need 20 exercise minutes to break my exercise record (which I set on the same day), but I won’t do that. Those 15 active calories I still need to burn for my movement record should be doable though. Today, unlike the time I set my old record, I did a variety of workouts: walking, swimming, the stationary bike and dancing.

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.

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.

Historical Perspectives on Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter H post in the #AtoZChallenge. Today, I will discuss some of the history of intellectual and developmental disabilities.

Throughout history, people with intellectual and developmental disabilities were feared and stigmatized. However, it wasn’t until the mid-19th century that societies in the western world started taking action to take care of them outside of family homes. At first, institutions were more or less educational, based on the idea that people with intellectual disabilities could learn too. However, towards the end of the 19th century, there interestingly was a shift away from educating towards warehousing. This was when large-scale state institutions were built.

An interesting turn involved the work of Wolf Wolfensberger around the mid-20th century. He believed in “normalization”, a term still used today. In fact, I saw it in the job description for support workers at my home. To be clear, I cringe at this idea, because who decides what is “normal”, anyway? Of course, the idea really should be to value intellectually disabled people’s contributions to society as much as non-disabled (“normal”) people’s. However, I personally find this term used when I am refused a plastic coffee mug to drink from, because a ceramic mug is more “normal”. For those not aware, due to my mild physical disability, I find a plastic one easier to hold.

I can’t end this post without touching on the Nazis’ treatment of the intellectually disabled. Initially, they were open about their eugenic “euthanasia” program, using intellectually disabled people to test mass murder techniques on they could later use on other groups such as the Jews. When families and other people started protesting too much, they went on in secret. The usual methods of killing disabled people in this later stage were starvation and medication overdoses.

I also should really touch on the ever-changing terminology surrounding intellectual disabilities. In the early 20th century, people with an intellectual disability were called “feeble-minded”. Then came terms like “idiot”, “imbecile” and “moron”, referring respectively to people with a severe/profound, moderate and mild intellectual disability. Then came “mental retardation”, which wasn’t actually removed as a term from the Diagnostic and Statistical Manual of Mental Disorders (DSM) until 2013. The current term in DSM-5 is intellectual developmental disorder, but intellectual disability is most commonly used.

I Would Never (Or So I Thought): My Changing Perspective on My Care Needs #31Days2022

Posted on by Astrid

Hi everyone. Today’s optional prompt for #31Days2022 is “never”. I am immediately reminded of my shifting perspectives on my care needs over the 17+ years that I’ve been in the care system. Some things I thought I’d never accept, let alone want, in my care, are now things I wish for.

Most notably, in 2008, when I’d been in the psych hospital for about three months, I was being discussed among some autism know-it-alls. When asked what I wanted them to know before the meeting – since I wasn’t present at the meeting itself -, I wrote down that I wanted to be back in the community as much as possible as quickly as possible.

Out of the meeting came the recommendation that I be transferred to an autism treatment facility on psych institution grounds. I eventually ended up going to the orientation visit for the facility and the treatment coordinator and I mutually agreed it wouldn’t be the best place for me, precisely because of what it was: a treatment facility. I didn’t need further training in independence skills, after all, because, due to the combination of my disabilities, this wouldn’t be successful.

At first, I however misunderstood the meeting’s recommendations and thought they wanted me to go into the workhome, which is essentially a long-term living facility for autistics on the same institution grounds. And this is where I started to object in a way I wouldn’t now: I didn’t want to go live on institution grounds long-term.

For the first several years of my experience in the care system, I thought that institutionalization was an excuse for poor care. I am not saying it isn’t, because people who live in the community may need more support than those who live on sheltered institution grounds. In fact, when my current care facility was built in 2015, grouping several community-based care homes together, it was out of a need for budget cuts.

However, that wasn’t the reason I didn’t want to live on institution grounds. Indeed, the reason was the fact that I perceived myself as far more independent than I currently perceive myself. Not just that, but I had a misguided view of the amount of care I could receive.

You see, in 2007, I left an independence training home, where, during the week, the staff/client ratio was usually 2:7. Granted, there was no night shift, not even a sleeping one. I could deal with that at the time and, as a result, thought I could live in a community supported housing facility with staffing available even part of the day. Never mind that this usually meant a much lower staff/client ratio, so that within staffing hours, I would need to share my staff with a larger number of fellow residents.

I also rebelled against living on institution grounds because of my wish that more people could be integrated into society with the right support. Then again, I realized within the past several years that just because I and other people would wish for integration within society, doesn’t mean society wants us in it. For example, institution grounds are just much safer to walk on for people who aren’t safe in traffic, and that happens to include me. Just because I wish all drivers would stop their vehicles when they saw me, with or without my white cane, doesn’t mean they do. And it’s not like they can’t tell I’m disabled when I’m not using my white cane.

Also in 2008 or maybe it was 2009, I saw this documentary about a care agency in the southwest of the Netherlands which had completely done away with institution grounds in 1997, even for the most severely disabled clients. The presenter started out by saying that half (I think) of the clients in another province wanted to go back into institutions. The southwestern agency’s director started talking highly of his agency’s approach, where for instance they call their support workers “personal assistants” and where he at first claimed all clients are successfully integrated within the community. The presenter started showing examples of clients who were drowning, figuratively speaking, in the community. The bottom line of the documentary was that the director made up his mind and invited the presenter to come back a year later to hear his revised approach. I am pretty sure I wouldn’t believe the presenter, saying the clients had obviously not received the right amount of support. But if you need a “personal assistant” by your side all the time in the community while you can roam institution grounds freely by yourself, living in the community isn’t necessarily the obvious choice.

Gratitude List (September 16, 2022) #TToT

Posted on by Astrid

Hi everyone. Right now I’m very hyper because of some really great news I just received. I’ll get to that at the end of this gratitude list, so you’ll have to be patient (or skip ahead). As usual, I’m joining Ten Things of Thankful with this post. Here goes.

1. I am grateful for my improved physical fitness. My cardio fitness level according to my Apple Watch is still low, but it’s slowly creeping up. My heartrate recovery is within the “good” range though. Granted, the watch only measured it after brisk walks, since I can’t run.

2. I am grateful for eggs. The guy from the care home next door to ours who has chickens near the day center, lets me check for eggs during the weekends when he’s home with his family. On Saturday, I found one. Then today, he gave me one just because he wanted to.

3. I am grateful the orthopedic shoemaker finally gave in and is going to get me completely orthopedic shoes rather than the semi-orthopedic ones I had been struggling with for the past two years. The semi-orthopedic shoes kept giving me blisters even after he adjusted them many times. For the fully orthopedic shoes, the shoemaker’s coming to measure my feet and make an imprint or whatever in early October. From that point on, it may still take six months before I get the actual shoes, but oh well.

4. I am grateful the orthopedic shoemaker finished repairing one of my regular walking shoes. For those who don’t know, the fronts keep getting damaged within weeks due to my drop foot. Now the shoes are at the main institution, where normally only a transportation guy picks them up to bring them to Raalte once a week on Thursday. The staff here are trying to send someone out there to pick them up on Monday.

5. I am grateful I decided to buy an extra pair of walking shoes.

6. I am grateful for new clothes. I went shopping for them on Wednesday. I bought two jeans and a blouse.

7. I am grateful for iOS 16 and WatchOS 9. I decided to update on Wednesday after all. Both have a few bugs, but not that many that they cause serious problems. Particularly, I am grateful that, after all sound disappeared from my Apple Watch after the upgrade, a restart (with sighted assistance) solved the issue. I am also grateful not to have encountered the bug so far that causes VoiceOver to stop working after restarting your iPhone.

I am grateful for all the new features with WatchOS 9. I love sleep phases and heartrate recovery like I mentioned. I also love that the Translate app on iOS is now available in Dutch too.

8. I am grateful I am doing pretty well on the fitness challenge I participate in this week. I have consistently maintained a position in the upper mid range, around 25th out of 107 participants.

9. I am grateful for a great weight loss result today. I lost another 0.9kg. Last week, I’d lost the same amount. I’m now 66.5kg, which is pretty awesome considering when I came to the care facility I was almost 10kg heavier and I’ve lost over 5kg since starting my food plan in January. I do realize I need to make sure I’m not overdoing it with exercising or I’ll gain all the weight back once the weather’s not so good anymore and subsequently I’ll lose my motivation to walk.

10. I am grateful for some sunshine today. We had rain too, for which I’m also grateful, but I’m happy I could go for some walks outside in the sun.

11. And now on to the great news… I am grateful the main institution home I’m on the waiting list for has a room for me real soon. I will be orienting on Wednesday and the Monday after and, if then I decide I want to move there, moving date has been set for October 5! Remember it’s up to me and, if I don’t want to move there, no-one is kicking me out of here. This is all causing a whirlwind of emotions and thoughts. After all, the only other time I ever requested to move myself, I had to decide within the day of a place having been found and it was the worst decision I ever made. Thankfully, my husband is coming to the second orientation visit with me and my staff will come with me on both visits. Now I’m going to write out some questions I have for the home.

What are you grateful for?

My Ideal Ways of Spending My Day

Posted on by Astrid

Hi everyone. I have been thinking about ways in which I would like to spend my days if I get to move to the main institution. Like I said yesterday, each client has their own day program, so they aren’t required to go to the day center by default. I also will keep my one-on-one support at least until December of 2023. In today’s post, I want to share my ideal ways of spending my days. These are things I might be able to implement should I remain here, but I’m dreaming big here and thinking of ways the institution could accommodate me too.

First, I would like to start my day in my room like I currently do. I don’t think I can handle eating breakfast in a group as of yet. That might change in the future. I would like to eat all my main meals in my room, but go to the living room for coffee breaks when I want to.

Ways I would like to spend my day, include crafting of course. I would really like to keep on doing my polymer clay work and maybe even sell it in the day center’s shop.

The day activities I am thinking the institution could help me meet my dreams with, are those related to sports and physical activity. I know the institution has a small swimming pool on grounds and I’d really like to use it. I’m not sure whether they might have exercise equipment too, like the type of equipment you’d find in a gym. If they do, I’d love to utilize that too.

The institution is in a rural estate area, so I’d love to go for walks on grounds. I’ll take my iPhone (by then, I might have a new one, who knows?) to take pictures of the beautiful nature.

I’ll hopefully at some point be able to take short walks on grounds on my own too. For that, I’ll need orientation and mobility training from the blindness agency, but I’m sure I can get that.

I may occasionally want to relax in a snoezelen® room. Then again, if I’m correct, I can keep my weighted blanket if I move within this care agency, so I might not even need a snoezelen® room.

I’ll probably also want to go to a day center every once in a while to socialize with other clients. The institution has three day centers I believe, but I’m pretty sure clients from the home I might go to won’t go to all three. That’s okay though, I’ll find out what suits me.

#WeekendCoffeeShare (September 3, 2022)

Posted on by Astrid

Hi all on this beautiful first Saturday of September. I for whatever reason keep typing “July” rather than “September”. Maybe that’s me wishful thinking. Anyway, here’s my post for this week’s #WeekendCoffeeShare. I just had my afternoon coffee, but the other clients are currently having theirs, so I bet there’s still some left for you. Let’s have a cup of coffee (or another drink, if you so prefer) and let’s catch up.

If we were having coffee, I’d start out by asking about your weather. Ours is beautiful. Today, we’re supposed to get daytime temps of up to 27°C. On Monday, the temperature’s even forecast to rise to 30°C. I guess my husband was wrong a few weeks ago when he predicted that it’d get only colder from that point on.

If we were having coffee, I’d tell you about all the physical activity I got in this past week. I got in a total of 330 exercise minutes according to my Apple Watch this week so far, exercise being anything at least the intensity of a brisk walk. I guess this means I can up my goal from 20 minutes to at least 30 a day. Then again, I badly want to reach it everyday.

If we were having coffee, I would use the rest of this post to share the details I promised you all in yesterday’s post about the potential new care home. You see, on Thursday at 2PM, the behavior specialist came by my room. The appt had already been planned or so I believe, because of the situation I shared a few weeks ago about an application having been put in for me to live at a senior citizens’ home for the visually impaired, a place I don’t consider suitable. I knew from my care facility’s manager that she understood this place doesn’t sound suitable indeed and also that she had heard that the people at the main institution for my current care agency, with whom I’d met at the end of July, were pretty enthusiastic about me. However, the manager didn’t expect to hear anything from them until next week.

Well, as it turned out, my behavior specialist had planned a meeting with the behavior specialist whom I’d met in July as soon as she could, which was last Thursday. It turns out I am number one on the waiting list for a home at the main institution. The home caters primarily to people with moderate to severe intellectual disability with a need for intensive support due to additional problems such as autism, attachment issues, etc. The level of intellectual disability is significantly less severe than in my current home, so I can actually make smalltalk with the other residents. The staff offer help with activities of daily living (personal care) where needed. Each resident has their own day program. This means that residents aren’t required to go to the day center by default. In fact, some of the residents go some of the time, others ride their bikes around institution grounds, while still others can’t leave the home unsupervised.

I told my husband about this home and he immediately replied that it sounds perfect. Well, I said, that isn’t possible, but it does sound pretty good indeed.

Of course, I am on the wait list, so there currently isn’t an available room, but the behavior specialist said they are working towards finding a new home for one of the current residents. She said it might go quickly but it might still take six months or so. Well, if you ask me, even if it’s going to take six months, that’s still super quickly. That’d honestly mean I’d have found a place within the year from saying I want to find a more suitable home.

I will get an extensive orientation, getting to look around at least twice before I decide whether I want to move to this home. I am both nervous and excited. Mostly quite excited though. I’d read up about this home before and wished I could live here and now my dream might come true.

How have you been?