Making Up My Mind: Why I Want to Live in an Institution

Posted on by Astrid

Last week, the behavior specialist for my care home came by for a visit to discuss my housing profile. This is the thing with my wants and needs with respect to a new prospective care home on it. I initially wasn’t too picky, saying for example that I would most like to live on institution grounds but if that isn’t possible, a quiet neighborhood home would do too. Then when I talked to my husband, he said that an integrated neighborhood doesn’t get much quieter than my current neighborhood in Raalte. He also told me I don’t need to make compromises about where I want to live as of yet, since I will be looking to stay in my prospective new home for the rest of my life.

The reason I initially compromised about living on institution grounds, is that my current care agency has only one such institution and that one at least wasn’t admitting new clients back in 2019. I’m not sure about right now or whether not admitting new clients means they aren’t keeping a wait list either. However, I was wary of contacting other agencies due to the bureaucracies involved. Then my husband said though that this shouldn’t be something for me to worry about.

Eventually, after talking about it with my assigned home staff, my husband and my mother-in-law, I decided to make up my mind about my wishes for the housing profile. I said I’d really like to be looking at institutions.

This does mean I had to drop my objection against contacting external agencies. I offered two agencies we could contact other than my current one. One has an institution in Apeldoorn, the city I grew up in, and another in a small town elsewhere in Gelderland, about a 45-minute drive from Lobith, where my husband lives. For reference: Raalte is about a 75-minute drive from Lobith and I did agree with my husband that I won’t be looking at care homes that are farther away. The other agency has an institution near Apeldoorn and one near Nijmegen. I’m not sure the one near Nijmegen was acceptable distance-wise to my husband, but the one near Apeldoorn certainly was.

Both agencies are unlikely to refuse to consider me based on my IQ alone, even though both primarily serve people with intellectual disability. The reason I think so is that both also serve other populations and I have some experience with both agencies.

I do feel all kinds of feelings about the fact that I’ve made up my mind. For one thing, I do feel some form of shame about wishing to live on institution grounds. Back in 2006 and 2007, I wrote agitated articles about the fact that deinstitutionalization was said not to be working by some non-disabled advocates for the disabled, claiming it was poor care, not community living, that was at fault. I meant, for example, the fact that people in the community need more support to go outside if, for example, they aren’t safe in traffic, than they would need in institutions. Then, if that support isn’t provided, it’s no wonder they’d rather go back to living in the woods.

Now one of the reasons I want to go into an institution is the fact that I don’t feel safe leaving my home and the only way of preventing me from leaving it anyway is locking me up. Now tell me again you want the least restrictive environment.

Another feeling has to do with the institution in Apeldoorn specifically. My family home was quite close by that institution. So close in fact that I remember one day when I was eighteen, having an encounter with the police and being asked whether I’d run away from there. I know my parents would feel intense shame if I moved there. Then again, they probably feel intense shame at the fact that I live with people with intellectual disabilities already. Besides, who cares what my parents think?

I do have a few things I need to consider when looking at external agencies. For example, my current agency provides free, pretty much unrestricted WiFi in all rooms of all its homes and it’s available to clients if they wish to use it, which I do. I am not sure the other agencies do, but I will inquire about this when the need arises.

Gratitude List (May 13, 2022) #TToT

Posted on by Astrid

Hi everyone! What a week, what a day it’s been. I really feel like writing, but my head is buzzing, so I thought for a bit of cheer and calm, I’d do a gratitude post. As usual, I’m joining in with Ten Things of Thankful. Here goes.

1. I am grateful my staff were able to get the staffing schedule figured out and actually without temp workers needing to step in. The reality was, the temping agency didn’t have anyone available, so the regular staff ended up overworking, but this was a huge positive for me as it meant no unfamiliar faces.

2. I am grateful that a new staff was finally hired to work here. She did come from another home that’s part of my care facility, so they might now have a staffing shortage, but oh well, that’s not my problem. Until this staff came here, a lot of potential staff were given a look around my home but decided eventually not to want to work here.

3. I am grateful for delicious home-cooked chicken and rice yesterday. I actually cooked it with my day activities staff.

4. I am grateful for the smile on one of my fellow clients’ faces when I offered him a serving of the chicken and rice too. He is the only one in my care home who can eat rice without choking, so the staff, when cooking, never cook rice. I’m so happy he was pleased.

5. I am grateful for Sadje’s comment on my last blog post. I thought WordPress was acting up, since I wasn’t getting any comments. It might still be, but at least someone is able and willing to comment.

6. I am grateful for a visit from my mother-in-law on Tuesday. I am grateful we had a good talk with my assigned home staff. After that, we went to Rijssen, a town about a 30-minute drive from Raalte, to go for a walk and have coffee.

7. I am grateful I was able to mostly stick to my healthier eating plan over the past week. The only exception was the sausage roll I ordered in Rijssen. It not only was unhealthy, but came out of the microwave or so it seemed, so it definitely didn’t score an eight out of ten on how much I wanted to eat it. That’s the rule my dietitian gave me for treats: if they don’t score an eight or above on how eager I am to eat them, I might consider skipping them.

8. I am grateful that I did lose 0.4kg when I stepped onto the scale today as compared to last week.

9. I am grateful my semi-orthopedic shoes arrived back from the orthopedic shoemaker. The last time I sent them back, I had a blister on my right heel after only ten minutes of walking on them. Now I haven’t walked longer than that at a time on the shoes, but so far, so good.

10. I am grateful I got an E-mail from the store I bought the headphones that stopped working after two weeks at, saying they’ll give me my money back. I don’t have it in my bank account yet, but they said it could take up to five business days.

11. I did order new headphones and am grateful they work so far. They are a fifth of the price of the non-working ones, but still I am hoping they keep working.

12. I am grateful for paracetamol. I had to take it several times this past week for toothache or headache, but thankfully it worked.

What are you grateful for?

#WeekendCoffeeShare (May 7, 2022)

Posted on by Astrid

Hi everyone on this Saturday evening. It’s rather late for coffee in my corner of the world, but I’m joining #WeekendCoffeeShare anyway. I don’t know whether we still have soft drinks in the fridge, as I don’t really care for them. My dietitian said that, if I don’t rate a treat at least an eight out of ten on how much I love it, I really should question whether it’s worth taking in the calories for it. Since soft drinks, including diet Dubbelfrisss, are extras, and I don’t rate them an eight out of ten at all, I’d much prefer water. That being said, if you’d like a soft drink, you’re more than welcome to go over to the staff or look in the fridge yourself. Let’s have a drink and let’s catch up.

If we were having coffee, I’d ask about your weather. Ours is good. We’ve had lots of sunshine, warm temperatures and almost no rain. In fact, I found myself pretty happy that we got a tiny bit of a drizzle this morning. Nature needs it (but then again it needs far more).

If we were having coffee, I’d share that this week started out rather rough, but has improved significantly as it progressed. I had some good meetings this week and we set out on the path of finding me a more suitable care home. For this purpose, the behavior specialist gave me some open-ended questions to think about for a “care home profile”. The answers I, my staff and the behavior specialist come up with will then be sent out to the care consultants within my care agency to hopefully find me a more suitable home.

If we were having coffee, I’d proudly tell you that I did quite a bit of walking this past week. I was finally able to go for a few 30-minute walks. They were exhausting, but I did it and I didn’t even use the elevator to go back up to the care home after the walks. Here’s hoping my physical fitness level is finally returning to some semblance of normal after the winter of me sitting on my ass and contracting COVID to top it off.

If we were having coffee, I’d tell you that, on Thursday, my one-on-one staff asked me whether I’d like to go to her home in the countryside to see her goats and their lambs. I loved it! Here are some pictures of me with the goats.



If we were having coffee, I’d tell you that, early this evening, I was startled because all doors in the entire home suddenly slammed shut. This normally happens when the smoke alarm goes off, but there was no smoke nor was there a smoke alarm going off. As it turned out, there was some power outage somewhere within the system. They’re currently working on solving it.

If we were having coffee, I’d share that I bought Cernit translucent polymer clay and am totally in love with a lot of tutorials that use it. I also looked up tutorials on how to use micas on polymer clay, since I still have some left from my soaping days. I can’t wait to start actually crafting again.

That being said, if we were having coffee, I’d tell you I’ve been struggling with wanting to do more than I can handle emotionally or physically lately. I’ve also been struggling with the staff overestimating my capabilities. It’s all rather frustrating when I want to be independent and productive but can really not cope.

If we were having coffee, lastly I would however say that I still find escapism in reading, listening to music, blogging and watching YouTube videos even if I don’t get to actually make the things I see.

How have you been?

Autism and Aggression: An Autistic Adult’s Perspective

Posted on by Astrid

April was Autism Awareness Month. In previous years, I have dedicated my #AtoZChallenge to autism, but this year, I chose a different topic. For a while, I had it in mind to focus on developmental disabilities in general, but, as you can see, I chose another topic entirely. However, the topic of autism is still on my mind. In the coming weeks, I want to offer more of an insider’s perspective on autism and its characteristics. After all, I am autistic and I feel that the blog coverage on autism is heavily divided between parents of autistic children sharing their stories and adult autistics sharing advocacy. Now there’s nothing wrong with advocacy – I feel passionate about it too -, but there is also nothing wrong with personal experience stories. What is wrong is when these are mostly one-sidedly coming from neurotypical (non-autistic) parents of autistic children. Hence, my insider’s perspective.

For my first post, I am choosing a rather controversial topic: aggression. When parents talk about their child with autism, one of the first things they will usually mention is the child’s aggressive behavior. And in fact, this was the first thing my parents would say when asked to describe my problem behaviors too. It was also what got me to be referred to the mental health agency for an evaluation at age 20, which ultimately led to my autism diagnosis.

I don’t know about statistics of aggression in general, but it is highly stereotypical to equate autism with violent behavior. Autistics are not more likely to be deliberately violent than neurotypicals and they are, in fact, more likely to fall victim to violent crimes.

That doesn’t mean aggression doesn’t occur and, when it does, that it isn’t related to the autistic person’s autism. To say that it’s a “comorbidity” is, in my opinion, doing the autistic a disservice. It is, however, an issue that arises in the interaction between the autistic person and a highly autism-unfriendly world. After all, at least I have often gotten aggressive when my needs for autism-supportive care are not met.

For instance, one day in the psych hospital, a nurse, whom I will call Sara, had said one evening that she’d get back to me the following day after morning report to talk about getting me unsupervised off-ward privileges. The next day, I went up to Sara, but wasn’t able to communicate clearly what I wanted. “I’m not your assigned nurse today,” Sara said. “Go to Daisy if you want something.” Now the nurse I’ll call Daisy was a temp worker, so clueless about my needs or what I’d talked to Sara about the previous day. I got very irritable, because Sara had promised me she’d get back to me and now she was referring me to Daisy. I screamed, walked around the ward restlessly and constantly nagged the staff in an irritable voice. By handover, a third nurse, whom I’ll call Robert, came on and said that he’d put me in seclusion if I didn’t calm down right away. “Go on then, stupid,” I shouted. So he did.

This was not my worst incident of aggression ever. As a teen, my mother reports, I would hit her. I currently still occasionally slap or push staff. Usually, this again results from staff not following through on something or not following my daily routine.

I feel strongly that, though not all incidents of aggression can be prevented by parents or carers providing autism-sensitive support, a lot of them can. If an autistic is aggressive anyway, there are much better ways of handling it than solitary confinement.

loopyloulaura

Also linking up with #PoCoLo.

Gratitude List (April 29, 2022) #TToT

Posted on by Astrid

Hi everyone. I am feeling a bit meh today. I don’t really feel like writing a gratitude list, but I do feel like writing something and I can’t think of anything else to write. For both of these reasons – to have something to write and to cheer myself up -, I am going to try to write a thankful list anyway. As usual, I’m joining in with Ten Things of Thankful (#TToT). Here goes.

1. I am grateful for pizza today. Yes, again. Another staff is leaving and she wanted to give us pizza or pasta from the local Italian restaurant as a goodbye present.

2. I am grateful I was able to give the staff who’s leaving her present. I didn’t end up making something for her myself and initially wanted to stay in my room while the other staff gave the presents to this staff, but I am grateful I decided to go and give her one of the gifts the other staff had bought on behalf of us clients.

3. I am grateful for quiet time to write. It’s now nearly 9PM and between 6PM and 7PM, a guy from the home next door was blasting his music on top volume. Even with noise canceling headphones (unfortunately still the ones I have on loan) on, I still could hear the music clearly. I’m so glad it’s quieted down now.

4. I am grateful for a good phone talk with my mother-in-law on Wednesday. I was able to tell her I’m going to discuss entering the process of finding another care home. To my surprise and gratitude, she fully supports me.

5. I am grateful for a nice phone call with my mother on her birthday yesterday. I obviously didn’t tell her I’ll be looking for another care home. We made some smalltalk and it was okay.

6. I am grateful for sleep. Despite feeling quite on edge lately due to a lot of issues, I am sleeping relatively well.

7. I am grateful to have been able to go to the day center for a considerable time twice this week.

8. I am grateful for funny stories to listen to on YouTube. There is a Dutch children’s book author called Jacques Vriens who read his own stories aloud on YouTube. There are also English-language YouTube channels for children’s stories, which I also love, but Jacques Vriens is a childhood favorite of mine.

9. I am grateful I was able to go onto the large trampoline on Wednesday. It was great fun!

10. I am grateful to be relatively financially secure. I won’t go into detail here, but I am just happy my husband and I can handle a little financial setback.

What are you grateful for?

The Wednesday HodgePodge (April 27, 2022)

Posted on by Astrid

Hi everyone. It’s King’s Day, so I have the day off from my day activities. This means for me that I don’t have one-on-one support between 1:30 and 4:00PM. This in turn means plenty of time to blog, so I’m aiming for two blog posts today. First, I’m participating in the Wednesday HodgePodge for this week. As the questions went online yesterday and the host participates in the #AtoZChallenge too, her questions are all related to words starting with the letter V. Here goes.

1. What does the word values mean to you personally? Where did your values come from? What are some of the values that have guided you throughout your life?
I discussed some of this yesterday already. Values to me are those abstract qualities that are important in my life. Among my values are authenticity, connection, self-determination and growth.

as for where they came from, I’d like to say I developed them in spite of my upbringing. My parents are very success-minded and more concerned with outward appearance than authenticity. I do think my self-determination comes from my parents though, as they did somewhat raise me to make my own choices.

2. Your favorite vanilla flavored something?
I love everything vanilla really (well, except for vanilla coke, because I can’t stand fizzy drinks), so picking just one is hard. I’m going with ice cream though, yum!

3. What’s something you’ve seen/done recently that you found to be very difficult, very confusing, very helpful, very interesting, or very special. Elaborate.
Deciding to have a discussion with the behavior specialist on the possibility of finding me a more suitable care home. It’s been a very difficult, very confusing time. I thankfully have been able to share my thoughts with most staff, who all have been as supportive as possible.

4. Something you own and love that is violet in color?
I don’t think I own anything that’s specifically violet. I mean, I have a lot of shades of purple in my polymer clay collection, including lilac and translucent lilac, lavender, plum and a couple colors I mixed myself. However, none are exactly violet. I’ve heard it’s one of the harder colors to mix with polymer clay too.

5. Do you have vacation plans on the calendar this summer? Tell us more.
No, I don’t. I was joking around with my husband yesterday about going camping out this summer, but really, we haven’t been on vacation since 2014. I really would like to someday, but I’d go into a hotel then (like we did the last couple of times we went on vacation). My husband is off work for two weeks around my birthday in late June and two more weeks around our wedding anniversary in September. We may plan some extra time together then, but that’s it.

6. Insert your own random thought here.
I just want to share I went on a giant outdoor trampoline this morning. Last year this day, my assigned home staff asked me whether I’d like to go to a playground in a neighboring village that had a giant trampoline and I said yes. I was discussing ways to get out of my room today when I remembered this and so we went again. It was fun!

Gratitude List (April 23, 2022) #TToT

Posted on by Astrid

Hi everyone on this sunny but windy Saturday afternoon. I’m writing a gratitude post once again. As usual, I’m joining Ten Things of Thankful. Here are the things I’ve been grateful for lately.

1. I am grateful for some lovely colors I’ve been able to mix with the Fimo Professional true colors pack I got from my staff last week. I so far mixed a purplish red, a beautiful green and of course the sky blue I already may’ve posted about last week.

2. I am grateful for Chinese takeout food. We went to get Chinese food last Monday. Originally, I’d gotten a little upset about it, because the staff generally default to satay with noodles. However, I talked it over with my assigned staff and we decided to order chicken with pineapple and sweet and sour sauce too. One of my fellow clients was completely delighted.

3. I am grateful for a text conversation with my sister. She’s still doing well with her pregnancy (she’s nearly 37 weeks along), for which I’m grateful too.

4. I am grateful for the support from my staff. I’ve had a rough couple of days this week, but my staff pulled me through.

5. I am grateful I was able to go on the elliptical for the first time in a long while this week. I went on it for only five minutes or so, but that’s the way to get started.

6. I am grateful I am sometimes able to go for slightly longer walks than just a walk around the day center and for several walks during the day now too.

7. I am grateful I did better than expected at my physical therapy this week.

8. I am grateful my husband is supportive of me even when I’m struggling. I am grateful that my husband is trying to help me come up with solutions to the obstacles I face in life.

9. I am grateful I was able to show a temp staff worker and the intern my polymer clay collection yesterday.

10. I am grateful for soothing playlists of nature sounds and instrumental music on Spotify.

11. I am grateful for sunshine. Despite the fact that it’s chilly and windy, I like it that it’s quite sunny.

12. I am grateful that, despite Easter and all the “bad” food I had over the past couple of weeks, I’m still just plain overweight rather than obese. I am actually at the same weight I was two weeks ago. This is not an excuse to continue having “bad” treats, of course.

That was a better gratitude list than I expected. I initially struggled to get to ten and now I got to twelve, which should be another reason to be grateful, yay!

What are you grateful for?

Happiest When…: My Creativity-Related Happy List #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter H post in the #AtoZChallenge. Sorry for my being late to post. I am also a bit tired, because I had a rather intense day, so I may not elaborate as much as I normally would. For my letter H post, I once again looked to The Year of You for Creatives. One of the prompts asked us to complete the following sentence ten times: “I am happiest when I…” I decided to tweak it to: “I feel happiest when…” Of course, I am going to answer this with things related to my creativity. In my letter E post, I shared general things that give me joy about my creative work. Today, I am going to try to be more specific. I am going to try to list some things about my crafting as well as my writing. I am aiming for ten things, but if I can think of more, I won’t stop there.

1. I feel happiest when I am watching a YouTube video of a polymer clay tutorial that I think I’ll be able to follow. I have a few favorite YouTubers who provide good voiceover and/or easy-to-follow tutorials.

2. I feel happiest when I find I’m almost perfect at something after a lot of practice, such as doing the twisted mane of a unicorn.

3. I feel happiest when a difficult polymer clay project comes out of the oven better than expected.

4. I feel happiest when online window shopping for new supplies for my crafts, even if I don’t end up buying anything. I feel particularly happy when I find new shops. I recently discovered Etsy. Though I haven’t ordered physical products there because of shipping and possibly customs clearance costs, I did order some digital products there.

5. I feel happiest when I’ve decided on the perfect colors (whether they are based on a color mixing recipe or not) for a project.

6. I feel happiest when a color I’m mixing comes out of the pasta machine blending process exactly as it should.

7. I feel happiest when finally, after a lot of work, a polymer clay slab comes out of the pasta machine without air bubbles or other imperfections.

8. I feel happiest when I’ve been able to take a good photo mostly by myself rather than someone else basically snapping it for me.

9. I feel happiest when I get nice comments on Facebook when sharing my creative projects.

10. I feel happiest when I get a lot of nice comments on a blog post I’m also content about.

11. I feel happiest when showing my staff my new creations or ideas, be it my new folder of color mixing recipes, my latest polymer clay creation or a YouTube video I’d discovered and want to base a new project on.

12. I feel happiest when I can make someone else smile by giving them a handmade gift. Last Monday, I gave a fellow client at the day center a handmade necklace and matching bracelet. Granted, I’d created them a while ago and they weren’t my style, which is why I wanted to get rid of them, but she was over the moon about them.

What makes you feel happiest, creativity-related or otherwise?

No Unwholesome Talk

Posted on by Astrid

“Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen.” (Ephesians 4:29 NIV)

I had a very bad anger outburst this afternoon. For a very minor reason, I yelled at and insulted a staff member quite majorly. I told her to leave, which she did, but not just because I told her to. In fact, I’d caused her to get a little teary.

Obviously, I regret my outburst, though initially I didn’t fully see that it was all my responsibility. I mean, I did feel as though this staff member had triggered me. I see now that my anger was extreme and way out of proportion to the situation.

Then, in a collection of journaling prompts, I was pointed to this Bible verse. I didn’t know what it said, so went and looked it up because I find that Paul’s letter to the Ephesians usually appeals to me. There it was. Do not let any unwholesome talk come out of your mouths. Wow!

This does not refer just to no swear words. If it had, I could’ve said I don’t use those. Instead, looking at the second part of the verse, we’re supposed to only use words that build others up. In other words, calling someone names is the exact opposite of what Paul asks us to do here.

I did eventually apologize. Initially, this was a kind of half-hearted apology. Not because I had meant my insult, but because I struggle to prevent this happening again and because, at the time, I didn’t fully see that I alone was responsible for my behavior. I see now. I am praying that, with God’s help, I will learn better anger management strategies.

God, I want to confess that I am a very sinful person. You know this already, but I need to realize that my behavior is wrong. I had a horrible anger outburst and I didn’t even fully acknowledge that it was my fault. Please help me take responsibility for my anger. Please also help me come to You in future situations where I get triggered rather than react in anger. I pray for forgiveness and hope that You will still accept me even though I am not living up to even human expectations, let alone Yours. In Jesus’ name, Amen.

#WeekendCoffeeShare (April 2, 2022)

Posted on by Astrid

Hi everyone on this cold Saturday evening. I am joining #WeekendCoffeeShare today. I’m afraid I just have water or maybe the staff has put some soft drinks in the fridge by now. My favorite soft drink, Dubbelfrisss, wasn’t cold when I had my evening drink about an hour ago. Anyway, let’s have a chat.

If we were having coffee, I’d tell you that I finally have been crafting again today after a week of just watching crafty videos and doing nothing creative at all. That is, I’ve been blogging, which counts too, of course, but I haven’t touched my polymer clay or jewelry-making supplies or macrame cords or anything.

Today, I finally did a couple of pieces for the mobile for the baby my sister is expecting. I also finished the polymer clay hedgehog I’d started on about a month ago. At first, I was disappointed, because I’d used up all of a particular color for its body and now it was nowhere to be found, so I couldn’t do the ears in the same color. Turns out real hedgehogs also have slightly differently colored ears than their bodies. Besides, I never really meant to be doing a fully realistic sculpture anyway (I can’t).

If we were having coffee, I’d share that the rest of the week was quite meh. I’ve been having tons of plans in my head, but no ability to actually put them into action. Today, I also experienced a ton of flashbacks and internal chaos. Seriously, the discrepancy between my intellectual ability and my emotional immaturity is really getting at me. I find that I can intellectually think of a lot of things that emotionally I cannot handle at all. I’m not sure if this makes sense.

If we were having coffee, I’d tell you that I may want to research an autism support method by Colette de Bruin. My assigned home support staff pointed it out to me and said she’s pretty much using the method on me already, but I may benefit from learning about it myself.

If we were having coffee, I’d share that I am very happy with the latest iOS update. I finally was able to do some reading again on my iPhone yesterday, since the update fixed a bug that caused my Braille display to become pretty unresponsive. I usually read with just my Braille display, as I don’t like VoiceOver’s synthetic speech for that.

If we were having coffee, lastly I’d tell you that I have a quiet weekend, because my husband isn’t coming over and I have no other plans. Next week though is going to be busy, especially the weekend. I am going to the nationwide cerebral palsy day with my mother-in-law. I will be attending a workshop on aging with CP in the morning, which I am really looking forward to. In the afternoon, I’ll be attending a yoga class. I may not be able to write a coffee share post then, especially since I’m also supposed to stay up-to-date with the #AtoZChallenge. I’ll be certain to write about it though.

How have you been?