#WeekendCoffeeShare (June 23, 2019)

Posted on by Astrid

A lot has been floating through my mind today, but until I decided to participate in #WeekendCoffeeShare again, I had no idea how I was going to convey my thoughts into a blog post.

Like last week, I’m having a cup of green tea as we catch up. I love green tea, more so than coffee. I must say though that I’ma bit addicted to coffee. I drink it more to get energized or out of habit than because I truly like it.

If we were having coffee (or green tea), I’d share how I’ve been doing with respect to finding a living facility. On Tuesday, I had an appt with the care consultant for a facility with my current care agency. Because he isn’t in a position to decide whether I’m a good fit, I’ll have to wait for him to discuss my case with the behavioral specialist and manager. He said he’d call my support coordinator next Tuesday, but wasn’t sure whether he’d have any news by then yet.

Because I wanted to remain active, my support coordinator has been contacting some other agencies. We started with the two national blindness agencies. Bartiméus has living facilities about an hour’s drive from my current home. Visio’s living facilities are all at least 90 minutes away. Visio was the first to return my support coordinator’s call and I have a meeting with them next week.

My husband was a little sad, as he thought I want to live in Visio’s facility that’s nearly a two-hour drive away. Of course, I want to be as close to my husband as possible, but I didn’t know how to go about finding a suitable living facility. My support coordinator is going to contact other agencies closer to my current home next week. These are not for the blind, but oh well.

If we were having coffee, I’d also share about our house-hunting experience. The visit to the house on Tuesday was okay, but after reading some reports on it, we decided not to go for it after all.

If we were having coffee, I’d share that my husband and I had lunch at a pancake restaurant today. I had a pancake with blueberries, while my husband had one with raisins and bacon as always.

If we were having coffee, I’d also share that the screen reader company finally called to let me know I could get a new version of JAWS, my screen reader for Windows, covered by health insurance. It is also about time for a new Braille display, he said, and they could let health insurance pay for both in one go. This means that after an eighteen-months-long wait, I may finally be able to get a PC with Windows 10 and the screen reader I love. Of course, I already have a Mac and hence I told the company rep I had to think of it.

My husband was critical at first. He asked which I’d get rid of if I had to choose one: my Mac or a PC with Windows 10 and JAWS. I said I’d get rid of my Mac. I mean, I’ve had it for nearly half a year and still struggle to use it. Other blind people say that’s normal, but I really don’t want to spend that long getting used to a computer. I mean, that’s how long it took me to get used to my very first PC! So my husband offered to get me a laptop with Windows 10 and all if he can have my Mac.

I have been thinking it over and the only thing I can do with my Mac that was a pain on PC was using a good feed reader. Then again, I can’t get used to the way Safari works on Mac, so if I want to actually interact with feeds, I’ll still prefer my iPhone. I no longer use my PC, because it has two broken keys and its Windows 8.1 won’t properly update.

Anyway, I’m going to call the company rep to let him know I’ll go for getting the Braille package as it’s called tomorrow.

If we were having coffee, I’d also share that it’s incredibly hot outside. In the coming week, it’s forecasted to get to 35 degrees Celsius or more. That’s no fun, as we don’t have air conditioning at home or at day activities.

The coming week should be exciting. Tomorrow, the day activities staff are taking some fellow clients and me to a local park and having lunch at a restaurant there.

Next Thursday is my birthday. I love it each year. We are going to eat at an Irish pub with my parents then. My sister and her husband are coming over for a visit on Saturday.

How have you been?

Gratitude List (June 22, 2019) #TToT

Posted on by Astrid

I am feeling okay. Not bad, not good. I am however rather uninspired as to what to write. For this reason, and to hopefully lift up my mood just a little, I’m going to participate in Ten Things of Thankful (#TToT). Here is my gratitude list for the past week. Man, it’s been forever since I did those.

1. Eating rice. My husband bought a rice cooker last week. I love rice, but my husband doesn’t like it when he cooks it the regular way. He does like it when cooked in the rice cooker though. We had rice or risotto several times this past week.

2. Lunch out with my husband. On Tuesday, my husband and I went for a visit at a house we might want to buy. It didn’t work out in the end, but the lunch beforehand was good.

3. My husband preparing my breakfast a few times. My husband is off work this week and next week, which means he’s still in the house when I get up at 7:20AM. Normally he leaves the house at between 5:00 and 6:00AM. He prepared my breakfast a few times this week, making me a cup of coffee. I’m normally too lazy and in a rush to make coffee for myself on week days, so this was extra lovely.

4. Nice weather. It’s been pretty good all week. For next week, the temperature is supposed to rise to 35 degrees Celsius, which isn’t what I like. But I’m thankful to be able to wear summer clothes.

5. Being productive in finding me a living facility. We had a meeting with the care consultant for a facility with my current care agency on Tuesday. The outcome was vague, as this person wasn’t in a position to decide whether I’d be a good fit. However, my support coordinator has been trying to contact several other care agencies.

6. Some nice walks with my support coordinator. On Wednesday and Thursday, when we finished the work we were doing for finding me a living facility, we went for a walk. It was fun.

7. Getting free candy. At the marketplace near my day activities, there is a candy, nuts and dried fruits vendor I regularly buy candy at when we visit the marketplace each Friday. This past Friday, he gave the staff some free candy to give us during coffee breaks.

8. Trying out some new workouts. I’m currently trying squats and such, which are incredibly hard. I also reached my five-day exercise goal, but cheated a little, as walks of 15 minutes or more do count and I didn’t go on the elliptical.

9. Curly fries again, yay! I hadn’t had them in a really long time, but my husband ordered them for me yesterday.

10. Leftovers from a fellow client’s celebrating 25 years working at my day activities. I didn’t attend the celebration itself, as it was on Tuesday afternoon, when we were visiting the house on sale. However, we had lots of leftovers on Wednesday.

Oh my, I’m really obsessing about food as I write this list. Can you tell I love eating? Well yeah, I do. Now going to try to exercise some.

Autistic Pride Day 2019: Reasons I’m Proud of Myself

Posted on by Astrid

It’s June 18, which means it’s Autistic Pride Day. I have known this for years, but didn’t realize it today until I saw another blogger share about it just about an hour ago. I don’t really know what to write about for today. I could list positive traits of autism, but others have probably already shared those. Besides, I don’t pride myself on my autism, despite not seeing it as a negative thing. I am proud of myself just for who I am. For this reason, I am going to list some reasons I’m proud of myself. Autism, after all, is part of who I am.

1. I am self-aware. I had a meeting today with a care consultant for a possible living facility for me. I was quite able to articulate my needs and strengths. I am increasingly aware of those.

2. I am resilient. Some people don’t think so, as I’ve had multiple mental health crises. However, I always veer back up.

3. I am determined. I don’t let others tell me what’s best for me. Again, this isn’t always seen as a positive characteristic, but so what? I think these people are just trying to get me to be submissive to their ideas of what I should be.

4. I am honest. I can be blunt, but I always speak my mind.

5. I am open to new experiences. This may contradict some common autism stereotypes. In fact, when I first heard of autism, it was explained to me as “being afraid of new things”. I am not.

6. I am affectionate. I do display affection in my own, autistic way, but I can definitely show love and affection for my husband and others I care about.

7. I am creative. Not in the sense that I can tell imaginative stories – my fiction has a horrible lack of imaginativeness to it -, but I think outside of the box.

8. I can be focused. That is, if something grabs my attention, I can completely hyperfocus on it. This can be a negative characteristic, but it definitely helped me during my school years and helps me focus on what I like now.

What are some reasons you are proud of yourself?

Confessions of a New Mummy

#WeekendCoffeeShare (June 16, 2019)

Posted on by Astrid

I have a ton I want to write about, but I’m not sure I can dedicate a full post to any one of these things. For this reason, I’m joining in with #WeekendCoffeeShare. I should really make this a regular habit, but for whatever reason, I cannot seem to make anything a regular habit where it comes to my blog. Anyway, grab a cup of coffee, while I grab a cup of green tea. Let’s catch up.

If we were having coffee, I’d like to share that this week has been pretty exciting. Not that anything much has happened, but we have a ton of plans layed out for the coming while.

For example, my husband decided he wants to go have a look at a house that’s for sale. It’s in his work city, which would mean a lot of time and money saved on commute. It’s a really old house, but my father said modernizing it should be relatively easy. My husband and I are going to have a formal visit on Tuesday.

My husband did ask whether, if I move there with him, I’ll retain my care. I said yes. The last time I participated in the weekend coffee share linky, I was awaiting news about my long-term care appeal. Well, I won! On June 4, I got approved for long-term care.

This also means I can start looking for a living facility. However, if my husband and I decide to buy the house and move before I’ve found a suitable facility, I will retain my current home support and day activities even though that city isn’t in our local authority. That’s as much as my parents know about long-term care. I haven’t told them I’m probably moving into a care facility.

Speaking of living facilities, I’ll meet with the care consultant for a living facility next Tuesday. This facility is about an hour’s drive from my current home, but it is with my current care agency and seems more suitable than the facility I toured in January. I cannot be sure of that, of course, as I have yet to be fully informed. So on Tuesday morning, I’ll meet with the care consultant and then in the afternoon, I’ll accompany my husband to the house visit.

If we were having coffee, I’d also share that my husband bought a rice cooker. He doesn’t like rice the way he usually cooks it, so was trying whether a rice cooker would help. I liked it. I really love the smell of rice!

Socially Awkward #SoCS

Posted on by Astrid

I am socially awkward. Before I was diagnosed with autism, this was how I saw myself. I even had an E-mail group on Yahoo! Groups titled socially_awkward. This was for adults and teens with social issues of any kind.

Indeed, the main symptom of autism is still seen as social communicative difficulties. I do have them, mind you, but I don’t see them as my main symptom of autism. My main symptom is overload, both cognitive and sensory.

Then again, like I said, I do have issues with social interaction. I haven’t had a friend other than my husband since special education junior high in 1999. I tended often to be too clingy. In this sense, I guess I exhibited the “acctive but odd” style of social interaction that is often exhibited by males on the autism spectrum and is seen as the least impaired style, common in those diagnosed with Asperger’s Syndrome. Yet I do experience severe impairments in other areas.

When I was older, I tended to exhibit a more passive interaction style. Then again, when at meetings, I can still be dominating. This is probably why the people in the Dutch DID group decided I wasn’t safe. They kicked me out, officially because they believed I didn’t have DID or had imagined it, but they cited as reasons for this that I talked bookish about my issues. Well duh, that’s typical of autistic active-but-odd interaction.

But back to how mild or severe my autism is in terms of social interaction or other symptoms. I was diagnosed as ASD level 1 under DSM-5, so the mildest severity level. The reason is probably that I can hold down relatively normal-sounding conversations in structured settings and with people of my intelligence level. At least if they’re focused on me, which diagnostic interviews usually are. I cannot keep up a conversation about someone else for long. This may be why some people, including my parents, used to see me as selfish. I tend to want to dominate or talk about myself. That is, I don’t really want to, but it is the most natural.

In the second symptom category of autism, which is restricted and repetitive behaviors, I was also diagnosed as level 1. I disagree, particularly because sensory issues have been added to the criteria and I’m severely impaired with regard to that. I stim all the freakin’ time, for example. I feel I should definitely be level 2 on this symptom category.

This post is part of #SoCS, for which the prompt this week is “social”.

Summer Memories: Camping at Vlieland

Posted on by Astrid

A lot of thoughts have been floating through my mind that I’ve wanted to blog about, but I couldn’t motivate myself to actually write. I’m not even sure what about these thoughts I wanted to write, so instead, I looked up a writing prompt again. Over at Mama’s Losin’ It, one of the prompts for this week is to share your favorite summer memory. Here goes.

In the early 1990s, my parents would take my sister and me camping at a campsite called Stortemelk at Vlieland, one of the Dutch Wadden Islands. We would send our baggage there via a now no longer existent transportation company called Van Gend & Loos and ourselves travel there by train and ferry. Our parents didn’t have a car at the time. This made the journey all the more interesting, because we met lovely people on the train.

We would often meet the same people at the campsite, but also we’d make new friends each year. In 1993, when I was seven, I remember we collected shells and bird feathers and such and put them on exhibit near our tent.

In 1994, we went again and this year was the year we built a number of treehouses. I was eight at the time and my sister was six. I still had a little vision, so I was able to join in with the rough-and-tumble play of the other kids. I loved this vacation most.

After that year, we stopped going to Vlieland for several years. The reason was our move from Rotterdam to Apeldoorn, so our parents wanted to use the summers to get to know their new city. When we returned to Vlieland in 1998, it was a lot less fun. I was twelve by this time and too old for treehouses. I was also too blind. I could no longer find my way to the campsite store or anywhere on my own.

The last time we went to Vlieland was in 1999. I have very few memories of that trip. I liked going again but probably just because I was used to the routine. It was no longer fun.

Mama’s Losin’ It

Fairy

Posted on by Astrid

Fairy. I have always identified with this word. Or elf. Or changeling. The mythology of fairies taking human children and replacing them with one of their own, a changeling, has always spoken to me. It is a common early explanation of autism in the centuries prior to Leo Kanner and Hans Asperger. Obviously, I don’t agree with this, but I do understand it.

When Elena, one of my most spiritual alters, first emerged, she didn’t see herself as entirely human. She was the first to claim a fairy, elf or changeling identity. ChangelingGirl is one of my most commonly-used nicknames on bulletin boards.

I still like the idea that I have some spiritual aspect to myself. I don’t fully believe in Indigo children or the like. Besides, the theory of Indigo children is rooted in racism, usually favoring White children over those of color. However, somehow, there is some appeal to it. I do believe everyone has some spiritual aspect to them though.

When the body was a teen and Elena was most prominent, we had these weird superstitious rituals. We would’ve been open to pendulums and the like if we’d known about them at the time. More recently, when we did know about alternative stuff like this, I’ve tried to explore the tarot. I have several tarot apps on my phone. Of course, they’re marketed as for entertainment only. I like to use them to inspire my self-reflection. I don’t care that there’s no scientific proof.

This stream-of-consciousness piece was inspired by today’s word of the day challenge.

Song Lyric Sunday: Desire/Lust/Romance/Passion

Posted on by Astrid

It’s Sunday and once again, I am participating in Song Lyric Sunday. Today, the theme is Desire/Lust/Romance/Passion. I am sharing a little song, which I already wanted to share several weeks ago when the theme was Fire or something like it.

In 2008 or 2009, my husband introduced me to Tom Lehrer. The first songs I heard were I Hold Your Hand in Mine and Poisoning Pigeons in the Park. For my 23rd birthday, I however got a CD with lots of songs by Lehrer. One of them is The Masochism Tango, which I am sharing here. I love the upbeat tune and the lyrics, of course.

Title: The Masochism Tango
Singer and Songwriter: Tom Lehrer

Another familiar type of love song is the passionate or
fiery variety, usually in tango tempo, in which the singer exhorts his partner to haunt him and taunt him and, if at
all possible, to consume him with a kiss of fire. This particular illustration of this genre is called
„The Masochism Tango”.
I ache for the touch of your lips, dear
But much more for the touch of your whips, dear
You can raise welts
Like nobody else
As we dance to the Masochism Tango
Let our love be a flame, not an ember
Say it’s me that you want to dismember
Blacken my eye
Set fire to my tie
As we dance to the Masochism Tango
At your command
Before you here I stand
My heart is in my hand . . .
(Yeechh!)
It’s here that I must be
My heart entreats
Just hear those savage beats
And go put on your cleats
And come and trample me
Your heart is hard as stone or mahogany
That’s why I’m in such exquisite agony
My soul is on fire
It’s aflame with desire
Which is why I perspire when we tango
You caught my nose
In your left castanet, love
I can feel the pain yet, love
Ev’ry time I hear drums
And I envy the rose
That you held in your teeth, love
With the thorns underneath, love
Sticking into your gums
Your eyes cast a spell that bewitches
The last time I needed twenty stitches
To sew up the gash
You made with your lash
As we danced to the Masochism Tango
Bash in my brain
And make me scream with pain
Then kick me once again
And say we’ll never part
I know too well
I’m underneath your spell
So, darling, if you smell
Something burning, it’s my heart . . . (hiccup)
‘Scuse me!
Take your cigarette from its holder
And burn your initials in my shoulder
Fracture my spine
And swear that you’re mine
As we dance to the Masochism Tango

I Got Approved for Long-Term Care!

Posted on by Astrid

Last Monday, I was so discouraged that I wrote a letter to myself motivating myself to keep going at least till 2021. I was in the process of applying for long-term care and I wasn’t expecting my funding to be approved until 2021. After all, my original application early this year had been denied. My support coordinator appealed for me, but I wasn’t expecting much out of it. The reason I had my hopes focused on 2021 is that by then, mental illness will no longer be excluded as a ground for long-term care, meaning that those with lifelong mental health conditions preventing them from living independently, will qualify.

Of course, I’m not just mentally ill, even if you see autism as a mental health issue (which it isn’t in my opinion). I am blind and have mild cerebral palsy too. I met some people at the CP conference who qualify for long-term care for just CP, even if it’s as mild as mine is. Then again, the rules have gotten stricter and those who lived in group homes or supported housing prior to 2015, qualify much more easily than those who didn’t, like myself. In this sense, my long psychiatric hospitalization works against me.

Two weeks ago, the lawyer in charge of my appeal with the funding agency (I didn’t have my own lawyer) said I probably didn’t qualify for long-term care. The reasons were complicated. From one person, I heard that the physician in charge of making medical recommendations was willing to recommend long-term care but was restricted by law because of my history of mental illness. From another, I heard that I couldn’t get long-term care because the physician couldn’t decide whether my primary disability is blindness, cerebral palsy or autism, so they decided not to qualify me at all. That’s rather weird, because they almost made it look like I would qualify with my exact limitations if only I didn’t have a psychiatric diagnosis on file.

I don’t know how they eventually managed to do it, but late Tuesday afternoon, the lawyer called my support coordinator to inform her I had been approved after all. I am so happy! I qualify based on blindness as my primary disability.

Now I feel weird. I know I should be happy and I am, but I feel also disconnected from myself. In a way, being approved for long-term care is an ending, in that I’ll (unless the laws change) never have to prove that I need 24-hour care again. On the other hand, it’s a beginning, enabling me to start looking for a group home. Because I qualify based on blindness, we may or may not be able to get me into a group home with my current care agency. After all, they primarily serve those with intellecctual disabilities. I prefer this agency though, so we may be looking into tweaking my care profile. If I can’t live with this agency, we’ll check out the two blindness agencies here in the Netherlands. One has housing about an hour’s drive from my current home, while the other agency’s housing is 90 minutes to two hours away. My husband said though to prioritize suitability of the group home rather than proximity to our current home.

I feel pretty distressed about telling my parents. They will be visiting me for my birthday at the end of the month, but I don’t know how far things will have moved along then. I don’t really know when to tell them. It’s okay though, I tell myself. I don’t need their approval.

#IWSG: What I Love to Read and Write

Posted on by Astrid

It’s the first Wednesday of the month and that means it’s time for the Insecure Writer’s Support Group (#IWSG) post. I forgot about it altogether until I saw another blogger post their #IWSG post.

This past month, I’ve not been writing much. I published only nine blog posts here and overall haven’t been very active in writing on the Internet at all. I did try out several new writing apps, but none suited me. Maybe that’s because I’d still have to actually have something to write on.

This month’s optional question for the #IWSG post is about your favorite genre to read and write. The question is probably mostly geard towards fiction writers, but I don’t care. I’m going to answer it anyway.

With regards to reading, the genre I read most often is memoir. However, the genre I enjoy most reading is young adult, specifically novels about social issues. I rarely read fiction geared towards older adults, though I’ve come to read it some more recently. In general, the topics I most like to read about are legal and medical issues.

With respect to writing, well, I hardly write fiction anymore, if at all. I would love to try my hand at poetry again soon, but am finding it hard to know where to start. I mean, poetry when I was a teen used to be just a story with random line breaks inserted, but that’s not what it is.

My favorite genre to write in, hence, is memoir. On this blog, I most enjoy writing the personal reflections. Particularly though, the letters I’ve written to myself have been the most interesting to write. It’s sad that my personal reflections are not among the most popular posts on my blog.