The Summer After High School

Posted on by Astrid

It is still incredibly hot here. That is, it should be a lot cooler than it was yesterday. I’m not feeling it though. Probably my room, which is at the front of the house, keeps the heat.

I want to write, but I don’t know what about. For this reason, I looked up writing prompts for the month of June on Google. A prompt I liked is to share about the summer after you graduated high school.

This was in 2005. Man, can you believe it’s already been fourteen years? I remember finding these odd lists of things that mean you live in 2005, such as “You have lost touch with old friends simply because they don’t have an E-mail address”. E-mail is way outdated now. However, I think WordPress already existed, though I didn’t have an account. But I digress.

I graduated from high school on June 24, 2005. Two weeks prior, I had finished the assessment week at the country’s residential rehabilitation center for the blind and had been advised to attend their basic training program. It was expected that I couldn’t start until October.

However, in early August, I received a phone call telling me I could start on August 22. So that’s where I spent the last few weeks of the summer holiday and the rest of the year.

The summer of 2005 was also the summer I had a ton of health worries. Most of them were just health anxiety, but one of these scares did get me sent to a neurologist for suspected shunt malfunction. That was when I first learned about the possible impact of my hydrocephalus on my life. I never had a shunt malfunction *knock on wood*.

The summer of 2005, essentially, was the time I left my parental home and entered the care system. Even though I was supposed to get independence training, my father predicted I would never leave the care system. He was right, but so what?

Today, I had a meeting with the blindness agency which the rehabilitation center is part of to see if I can live with them. I won’t, because their living facilities are all over an hour’s drive from my husband. This meeting did remind me of how I entered the care system fourteen years ago with the aim of doing training for a year (at the center and an independence training home) and then leaving for Nijmegen to live completely independently. It didn’t work out. The disparity between this overly-normal, independent self, the one who is married now and doesn’t need help, and the multiply-disabled self, is still hard to deal with.

39 Odd Things About Me

Posted on by Astrid

I found this survey on several other blogs and thought I’d participate. I don’t know who created it. It’s originally called “40 Odd Things About Me” but there was no question #31, so I corrected it.

1. Do you like bleu cheese? No.

2. Coke or Pepsi? Neither. I don’t like soft drinks.

3. Do you own a gun? No.

4. What flavor of Koolaid? I don’t think Koolaid even exists here in the Netherlands. If you mean lemonade, I don’t care for it but the one I’d drink if I had to is raspberry.

5. Hot dogs? Yes!

6. Favorite TV show? I rarely watch TV.

7. Do you believe in ghosts? No.

8. What do you drink in the morning? Black coffee or water.

9. Can you do a push-up? No way!

10. Favorite Jewelry? My wedding ring.

11. Favorite hobby? Writing.

12. Do you have ADD/ADHD? Maybe. I definitely am disorganized but I’m not hyperactive. If I don’t have ADD, I’m pretty sure I have some type of executivve functioning disorder.

13. Do you wear glasses? No (they wouldn’t help my sight anyway).

14. Favorite cartoon character? Donald Duck. Is he a Dutch invention?

15. What three things have you done today? Done my morning routine, gone to day activities, read blogs.

16. Three drinks you drink all the time? Water, coffee and green tea.

17. Current health worries. Don’t know.

18. Do you believe in magic? A little.

19. Favorite place to be? The sensory room at day activities.

20. How did you bring in the New Year? I don’t remember.

21. Where would you like to visit? The USA.

22. Name four people that will play along: I don’t know.

23. Favorite movies? I don’t watch movies.

24. Favorite color? Blue and green.

25. Do you like sleeping on satin sheets? I don’t know.

26. Can you whistle? No.

27. Where are you now? Home.

28. Where would you rather be? Somewhere cooler.

29. Favorite food: Chicken.

30. Least favorite chore? Vacuuming.

31. What’s in your pockets? I’m wearing a skirt and T-shirt, so no pockets.

32. Last thing that made you laugh? Reading these questions on another blog.

33. Favorite animal? Cats when it comes to pets, dolphins when it comes to wildlife animals.

34. What’s your most recent injury? Hitting my toe on the elliptical three weeks ago. It still hurts.

35. How many TV’s are in your house? One.

36. Worst pain ever? My collarbone fracture.
37. Do you like to dance? Yes but I can’t.
38. Are your parents still alive? Yes.
39. Do you enjoy camping? No.

#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