Dear 2021…

Twenty-twenty won
That’s how you begun
For good or for bad
All that we had
Back then, you would continue
And you did

For most, it was probably a sad thing. COVID wasn’t over with. In fact, it’s likely here to stay.

For me, it was a good thing though. At the end of 2020, I was approved for the right level of one-on-one support for a year. I just found out last week that it got approved for another two years to come. I am so relieved! For me, I am more than happy that twenty-twenty won. At least in this respect.


This piece was written for Friday Writings, for which the optional prompt this week is “Dear 2021…”.

Friends and Buddies

This week’s topic for Throwback Thursday is friendship. I was never really good at making friends. I still don’t have any real friends other than my husband. I mean, of course I could consider some of my fellow clients “friends”, but our relationship isn’t as deep as that of normal adult friendships.

In early childhood, I did have one friend. Her name was Kim and we used to make mud castles together. Or anything out of sand and water really. Kim’s last name translates to “peat” and my father used to jokingly call her “Kim Mud” rather than “Kim Peat”.

When I went to the special school for the visually impaired at the age of five, I started in a first grade class despite being of Kindergarten age. All girls in my class were at least a year older than me and they enjoyed “babysitting” me. In exchange, for the next three years, I’d help them with their schoolwork.

By the age of nine, I transferred to a different school for the blind. Though I did have a friend there, I was also an outcast and got heavily bullied.

My best time socially was my one year at the special ed secondary school for the blind. I had one good friend there, but also got along pretty well with everyone else in my class and most kids in my school in general.

All that changed when I entered mainstream high school at the age of thirteen. Within a month, everyone had formed cliques except for me. A few months later, my favorite clique took me under their wing and pretended to be my friends, only to drop me again when they’d had enough of me. I was friendless for the remainder of the six-year program. I didn’t really care. Or maybe I did, but I was determined to show my parents and teachers that I could earn a mainstream high level high school diploma. And I did. Not that I use it for anything now, but oh well.

Another topic mentioned in the Throwback Thursday post title at least is buddies. This reminds me of the autistic student buddy program I was part of during my two months of attending university. This program assigned a psychology student volunteer buddy to an autistic student to help the autistic with planning their coursework or other activities related to their studies. It worked in theory, but the catch was that these buddies were volunteers helping only with certain things for one or two hours a week at most. At the time, you couldn’t get paid support workers for assistance related to college or university studies, as the reasoning was that if you could be a student in college or uni, you should be able to do the planning and related tasks yourself. Needless to say my buddy got overwhelmed within a week. I feel intensely sorry for her.

The reason I mention this, besides it being in the post title, is the fact that I realize I struggle to maintain a distinction between social and professional relationships and, with the buddy, things got even muddier. I mean, friendships are supposed to be reciprocal, while professional relationships are not. For this reason, I am allowed to unload my shit to a professional without needing to listen to theirs. Professionals, however, get paid, while friends don’t. With the buddy, the situation got complicated, in that my fellow students called on my buddy to calm me when I was in a meltdown. That clearly wasn’t her role.

This thing about lack of reciprocity, however, also probably killed off that mainstream high school friendship I pretended to have. I don’t blame myself entirely though: my so-called “friends” also felt obligated to hang out with me out of pity, and that’s never a good reason to be someone’s friend.

My Perfect Lover

I think my husband is perfect. He is the ever-most-beautifullest, ever-most-lovablest
person in the world. That’s why I chose him as my lover.

My husband and I can finish each other’s sentences and it doesn’t get annoying. Or sometimes it does. Then we say “banana spider” and the other knows we’ve bored them out of their mind.

We joke that, when we get old and suffer with dementia, only the two of us will still understand each other, since we have so many special phrases and words between the two of us. At least I hope we’ll have something to laugh at ourselves about then.

Honestly, it’s too bad that my blog is in English and my husband and I communicate primarily in Dutch. After all, our expressions sound even better (or should I say even weirder?) when written or spoken in our native language.

Written for Twiglet #257: “Even Better” and FOWC: “Lover”.

Hobbies I Could Turn Into Christmas Gifts

Hi everyone. As regular readers of this blog know, I have a lot of eBooks on journaling. One of them is a collection of 31 Christmas-related journaling prompts and one of its prompts is about turning hobbies into Christmas gifts. The prompt asks us to think of ten hobbies that could be turned into Christmas presents. They don’t have to be physical presents. In fact, the explanation behind the prompt was about a little boy coming to greet Jesus and, rather than bringing riches like gold or myrrh, he brought his drums and played little Jesus a song. Today, I am going to share some of my passions that I could turn into Christmas gifts. I am pretty sure I won’t make it to ten, but that’s okay.

1. Storytelling. Some kind words can mean the world to someone. I am not too much of a wordsmith in terms of poetry or fiction, but I can definitely share some of my positive thoughts with someone I care about this holiday season.

2. Soap making. Okay, I can’t find my Christmas tree mold as I write this, but I could still create a soap in festive colors. After all, I do have gold and red mica powders.

3. Aromatherapy. Related to the above one, I could obviously add a Christmassy scent to my soap or other DIY bath and body care product. I have a ton of seasonal essential oils, including white fir, cinnamon and orange. I also am pretty sure I have a Christmas tree fragrance oil.

4. Polymer clay. Of course. I recently created a polymer clay Christmas tree and am going to buy white Fimo soon so that I can create a snowman too. I have a few Christmas-related cutters, but I prefer creating sculptures.

5. Jewelry-making. I don’t have that many Christmas-colored jewelry-making supplies on hand right now, but if I wanted to, I could purchase them. I can definitely make a holiday-themed keychain or bracelet. If I am going to use my polymer clay to make jewelry with, I do have Christmassy colors.

6. Reading. I could read my fellow clients a Christmas-related children’s story.

7. Baking and cooking. I am not a great cook or baker, but I could with some help from the staff definitely whip up some seasonal treat. I love looking up recipes.

Well, I can’t think of anything else right now, but I am pretty content with how I did on this list.

How could you turn a hobby of yours into a Christmas gift?

Keep Calm and Carry On Linking Sunday

This Is “Profound Autism”?: Reframing the Discussion Around Complex Care Needs

A few days ago, there was a discussion on the Autism Science Foundation’s Facebook page in which parents of autistic adults with complex care needs were describing their children with the hasthag #ThisIsProfoundAutism. I asked to reframe the discussion to include people with multiple disabilities including autism in general, because it is rarely (but not never!) autism, no matter how severe, alone that causes a person to be completely dependent on caretakers. I then explained that due to the combination of my disabilities, I need 24-hour care, including one-on-one for most of the day.

Not surprisingly, I was quickly met with the question whether I was saying I needed 24-hour help with basic tasks such as eating, bathing, dressing myself, etc. Well, the Autism Science Foundation page is a public Facebook page and I didn’t want the people on my friends list (including immediate family) who don’t know this, to judge me for it, but the short answer is yes. While I, like presumably most “profoundly autistic” people who don’t have physical disabilities, am physically capable of eating and dressing myself for the most part with some difficulty, my executive dysfunction means I still need help with them. As for bathing, well, I basically need someone to wash me, because, while I can physically hold a washcloth in my hand, I don’t have the organizational skills to actually work out the ritual without a ton of supervision and even then it’d lead to a lot of meltdowns.

I did, incidentally, point out that I recognize intellectual disability as a valid additional disability that needs to be taken into account when I asked to reframe the discussion. After all, that’s most likely what’s causing these autistic adults to be unable to understand instruction and to be completely dependent. For me, it’s a combination of executive dysfunction, which is a direct autism symptom, blindness, mild cerebral palsy, and other things.

I also do recognize that the need for support with severe challenging behavior is not the same as the need for help with basic personal care. One does not exclude or necessarily include the other and one is not more valid than the other. I, for one, am somewhat more independent in terms of eating, dressing and bathing than my severely intellectually disabled fellow clients. I am a lot more dependent where it comes to the effects of my challenging behavior.

I also do not mean to say that autism on its own cannot possibly cause a person to need a lot of care. It can. I am reminded of a girl I read about on Dutch social media many years ago, who indeed had hardly any functional communication skills but did have an IQ above 85. She, unlike me, didn’t have any additional disabilities. She was completely left behind in the care system: she was too severely disabled for traditional child and adolescent mental health services, but her IQ was too high for intellectual disability services. Really, I should not have called for reframing the discussion to include those with multiple disabilities, but those with complex care needs in general.

That being said, I strongly disagree with those people who say that just because I can write, means I should have ignored the conversation, since it clearly wasn’t meant for me. The fact that I can write, does not make me not dependent on care providers and does not mean policy or lack thereof won’t affect me. I am autistic and that, along with my blindness and other disabilities, causes me to need the extensive care I get now.

Gratitude List (December 10, 2021) #TToT

Hi all on this cold but lovely Friday. Today, I’m doing a gratitude post, just because I can. As usual, I’m joining Ten Things of Thankful (#TToT). Here goes.

1. I am grateful my mammogram came back all clear. I still suffer with slight discomfort, but I feel comforted knowing it’s nothing serious.

2. I am grateful I got my COVID booster shot yesterday and I didn’t even suffer a sore arm. Well, not that arm, at least. All my limbs were stiff this morning, except for the arm I’d been jabbed in.

3. I am grateful my one-on-one support got approved again. Not only that, but it got approved for two years this time! I am so intensely happy, but still can hardly believe it.

4. I am grateful for crafty inspiration. I am currently working on a mixed media Christmas project which includes polymer clay.

5. I am grateful my husband was able to sort out my health insurance for next year. Here in the Netherlands, basic insurance is mandatory but you get to pick your own private insurance company. The government decides what is covered under basic insurance but insurers get to fill in the fine print and decide which care providers (eg. doctors, hospitals, etc.) to contract with. In addition, they get to offer additional coverage packages. For several reasons, my current health insurance was no longer fitting for me, so I decided to change insurers, but needed my husband to help me make the actual switch. I am so glad it seems to be sorted now.

6. I am grateful we still have pepernoten. That’s a typical St. Nicholas (December 5th) treat and I love it!

7. I am grateful that I was able to have quite varied lunches over the week and most were relatively healthy too. I had Turkish pizza on Wednesday, which was my unhealthy lunch of the week. Yesterday, I had a boiled egg on bread and today, I had a toasted cheese sandwich. On Monday and Tuesday, I think I had my usual lunch of a peanut butter sandwich, which I don’t really like.

8. I am grateful I was able to clean my essential oil diffuser (the new one) yesterday and that it was hardly dirty at all.

9. I am grateful for my Christmas tree and its lights. Its lights were almost out this afternoon, so initially I thought its batteries were empty. That would’ve been highly annoying, since I had only put the batteries in last week. Thankfully, switching the position of the batteries did the trick of turning the lights on again.

10. I am grateful I have been sleeping really well over the past several nights. Last week, I had a few rough nights, but this week is much better.

It was harder than I expected to actually make it to ten things of thankful. I mean, I am overjoyed at my one-on-one having been approved, but that makes for only one item on the list. However, I am trying my best to remind myself that even the little things in life that I am grateful for, can and should make it onto this list.

Describing My Favorite Place

For her first writing prompt, Ebar asks us to describe our favorite place using all five senses. I was thinking of sharing something about my favorite place in the entire world just yesterday. As someone who doesn’t feel she belongs anywhere, the concept of a favorite place is hard to comprehend. However, right now, my favorite place in the entire world is where I am at this very moment: my room in the care home. Below, let me describe it using my five senses.

I can see the light being on. Though I cannot usually see the colored LEDs on my essential oil diffuser due to being blind, I know they are there and appreciate them. I can see through the windows. Well, not right now as it’s dark outside and the curtains are drawn, but during the day, I can.

I can listen to the sound of soothing music on my music pillow, or to my text-to-speech software on my computer or iPhone through my headphones. I can also sometimes hear the door behind which the laundry and trash cans are stored slam shut right below my room. I don’t like that sound, but the staff are looking into the technical people doing something about the door being made less loud. I can hear the sounds of other clients and staff elsewhere in the home. I may not always like those sounds either, but they are the sounds of my room. I was almost going to say they are the sounds of home, but calling my room “home” just feels like it’s a step too far as of yet.

I can feel the fabric of the chair I’m sitting on. I can feel the characteristic floor my feet touch. When I’m in my bed, I can feel the comfort of my weighted blanket and my stuffed animals.

I can smell the scent of whichever essential oil blend I choose to put into my diffuser when I want to. Lastly, I can taste the meal delivery service meals in my mouth. I can select from their menu and, though the meals aren’t great and there’s a particular lack of variety, some are quite delicious. I’m going to pretend we have lasagne for the sake of this post.

What’s your favorite place like?

Final Goodbyes

Yesterday, the fellow client who passed away was temporarily moved from the morgue into her room in the care home. I went to have a quick look yesterday evening. This morning, since I had finished my polymer clay butterfly and flower, I went back into her room and set them at her remembrance table next to her coffin. My assigned home staff was with me and asked me whether I wanted to touch her coffin, the things she had with her and even her hand. I did. Her hand was cold, which was the final reminder I needed that she’s really dead.

This afternoon, we went back into her room to pick a rose from her remembrance bouquet. We then went outside and stood in a circle with all other clients and staff who were close to this client and the family. Everyone laid a rose on the coffin. The client’s brother and our support coordinator spoke a few words and then the coffin was put into the funeral car and driven away. My assigned staff cried a few tears. I did feel sad too, but I couldn’t cry.

This is the first time I’ve ever been this close to a deceased person. I mean literally, as in touching her hand. When my maternal grandfather had died in 1995, I did pay him a quick visit at the funeral center, but was only able to have a quick look and with how little vision I had back then, I probably could hardly make out what he looked like. With my other grandparents, I didn’t ever get to see them while in their coffins. I had originally thought I wouldn’t benefit from visiting this client in her room because I couldn’t see her, but I actually did benefit. I was able to say my final goodbyes. Now I know she’s really gone.

Written for E.M.’s Random Word Prompt #7: “Remembrance”.

A Few Really Intense Days

Last Thursday was a weird day. I had to have my mammogram at 11:45AM at the hospital in the nearest city, which is half an hour’s drive away. We arrived about fifteen minutes early, which was good, since I still needed to get an ID label. Normally, the hospital give you an ID card with your first visit, but the receptionist said I should already have one since my ID was in their system. It probably was from when I had my abdominal X-ray at the outpatient clinic here in town, where apparently they don’t do ID cards. Oh well, he printed off a label and sent me on my way.

The mammogram people were running a bit late, so I got a little stressed. As it turned out, the person doing my mammogram was also a guy, which made me feel slightly uncomfortable. I tried to reassure myself that it’s his job. The mammogram was painful but thankfully it was over with quickly and I knew that it being painful said nothing about possible results.

In the evening, a male I initially didn’t recognize was in the care home. As it turned out, he was our GP. I was already distresssed from my schedule going to pieces due to the mammogram. It was getting even worse, because it turned out a fellow client had to go to the hospital. She had Down Syndrome with severe heart complications and the doctor suspected her heart was acting up again.

Later, it turned out she had RSV, a type of pneumonia that normally only affects babies and small children. She was tested for COVID too but was negative. As she was moved from cardiac care to the lung unit, she seemed to improve over Friday and Saturday, but wouldn’t be discharged until Monday as there are no doctors to do that over the weekend.

Thursday night, I myself started experiencing nausea and bad stomach pain and could hardly sleep. I vomited a few times in the morning, then was exhausted and lay in bed most of the late morning and early afternoon Friday. Thankfully, by Saturday, most of my symptoms were gone.

Then on Sunday morning, I got the news that the fellow client who’d gone into hospital Thursday evening, had passed away after all. My first thought was: “This won’t affect staffing, will it?” I quickly silenced those thoughts, knowing they are selfish. When the manager came by to support the staff, she did pay a quick visit to my room though and I asked her whether the vacant room would be filled quickly now. She reassured me that the staff and clients will have time to process this loss first.

I have been busy all of yesterday evening and today thinking about how to make something for the client out of polymer clay to go with her to the funeral. Yesterday, I initially made a butterfly using a mold, but I did it all wrong and it turned out rather rubbish. Then I decided to create a multicolor flower. However, one of the staff who knows the family’s wishes about the funeral etc., told me a butterfly would be especially fitting. So I stressed all day about how to make a butterfly using my rather inflexible mold. I might’ve found a way. My nurse practitioner, with whom I had an appointment this morning, did reassure me that I am well-intentioned regardless and that’s what matters.

This afternoon, I got the results of the mammogram. Thankfully, there are no abnormalities! At least that’s something to be happy about.

Song Lyric Sunday: Kitchen

Hi everyone. It’s been forever since I took part in Song Lyric Sunday, but today, I wanted to. Today’s prompt is house/room/shower/kitchen/attic. This wasn’t as easy as it initially seemed. I mean, I know a ton of songs about “home”, but “home” isn’t necessarily the same as “house”.

Then, I was tempted to share that famous Venga Boys song. You know, Boom, Boom, Boom, Boom, I want you in my room? I was a little too old for this music at thirteen when the Venga Boys were popular, but still I liked them more than my younger sister did and this song was definitely a guilty pleasure.

I finally decided to check out one of my favorite country singers, Bobby Bare, on Spotify and see if he had any songs that fit the prompt. Then, I quite easily stumbled upon Singin’ in the Kitchen. I’d honestly never heard this song before and I don’t really like it now that I have, but I like Bobby Bare and am guessing this isn’t a song many others would come up with, so…

Song Title: Singin’ in the Kitchen
Singer: Bobby Bare
Songwriter: Shel Silverstein

Shall we do it? (Shall we do it?)
Okay this is, uh (no, I think we shouldn’t)
Is everybody ready now? (Yeah!) Okay!
Here we go singin’ in the kitchen, all together now, singin’ in the kitchen
Everybody singin’ in the kitchen, bangin’ on the pots and pans
Mommy and daddy singin’ in the kitchen, baby laughin’, singin’ in the kitchen
All the kids singin’ in the kitchen, bangin’ on the pots and pans
Supper’s done and the table’s clear, baby wants a bottle and I want a beer
Lord I sure am glad I’m here where there’s lots of love to share
And I clap hands and everybody sings, dishes cling and the banjo rings
There’s gravy on these guitar strings but I don’t really care
‘Cause here we are singin’ in the kitchen, all together now, singin’ in the kitchen
Everybody singin’ in the kitchen, bangin’ on the pots and pans
I’ll play the comb and you’ll play the spoons
I’ll sing the words and you’ll sing the tunes
We’ll wake up the old man in the moon ’cause we sing so loud (yeah)
I’ll hug ya all and you’ll hug mother, snuggle up close to one another
Just like bread on a piece of butter, Lord it makes me feel so proud
‘Cause here we are singin’ in the kitchen, all together now, singin’ in the kitchen
Everybody singin’ in the kitchen, bangin’ on the pots and pans
Now the fireplace embers are glowin’ red, everybody’s tired and it’s time for bed
Baby’s noddin’ his little sleepy head so let’s sing quiet now, shh!
What do we love? (Singin’ in the kitchen) can’t get enough (singin’ in the kitchen)
Whole lotta love (singin’ in the kitchen) bangin’ on the pots and pans
Mommy and daddy (singin’ in the kitchen) a little bitty baby (singin’ in the kitchen)
All the kids (singin’ in the kitchen) bangin’ on the pats and pans, shh!
Everybody singin’ in the kitchen, bangin’ on the pots and pans
Yeah, mommy and daddy singin’ in the kitchen, baby laughin’, (singin’ in the kitchen)
All the kids singin’ in the kitchen, bangin’ on the pots and pans