First Day at New Day Activities

Posted on by Astrid

We had our first day at the new day activities. The taxi arrived at my doorstep around 8:10AM. Since I’d been informed I’d be picked up around eight, I had already been waiting for about fifteen minutes. That was no problem though. The driver said he’d have to pick up some other people on the way, but I still arrived at day activities by 8:35. That’s very early, since most other clients don’t arrive till nine o’clock. The taxi driver said that he’d pick me up a little later tomorrow.

When I arrived, I had some water. While placing my stuff where it belongs, I stumbled upon a weighted chair. This is a comfortable chair where you can fold the arms inward, which are filled with balls to make them heavier. That way you’ll feel some deep pressure. I don’t really know how to explain it but it was really good and I sat in the chair for a little while.

After that, I did some table-based activity using magnetic building materials until it was time for coffee at 9:30. We went outside to drink our coffee. Meanwhile, I inquired as to whether we’d be going for a walk this morning. This group usually does on Monday mornings, but it’s still very hot so I thought it’d be too hot. One of the staff said it’d be too hot indeed but the other staff would have to go to the supermarket and she could ask whether I could go with her. This was fine with the other staff and we went on the side-by-side bike. I loved this.

After that, I did another table-based building activity. This one I had tried already when I was introduced to the center a few weeks ago, but I discovered new ways of building the blocks anyway.

Meanwhile, the staff were sorting out how to register my attendance in the agency’s computer system. This did stress me out a little, but not too much and I was able to confirm with my support coordinator that it would all be sorted by tomorrow.

The taxi back was again very early. I’d been informed that I’d be taken home by 1PM, but the taxi arrived at the day center by 12:30 and the driver was sure that this was the correct time to pick me up. Well, we were still eating our lunch, so no. I quickly collected my stuff and went home. Overall, it was a good day.

#TakeTheMaskOff: My Experience of Masking

Posted on by Astrid

 

Two weeks ago, the #TakeTheMaskOff campaign for autism accetpance started. I posted an article for it on my main blog, but already then I was thinking of relaunching this blog, for which the original purpose was to be able to be completely honest about my experience. That is, after all, what taking the mask off means. As such, I thought that I’d share this article here too. Like I said, the campaign is aimed at acceptance for the autistic community, but it is also relevant to the trauma survivor community. After all, many people, including myself, mask the reality of their survivorship. So let me share.

 

Today, rather late, I found out about the #TakeTheMaskOff campaign designed to promote autism acceptance and awareness of the effects of masking. I really want to participate, so even though it’s incredibly hot here, I’m writing a post.

 

The campaign consists of six consecutive weekly themes about which participants blog, vlog or post on other social media. The first weekly theme is “What is masking?”

 

 

Masking, put simply, is pretending to be something you’re not. This can be done either consciously or unconsciously. Many autistic adults have learned to mask so well it’s almost second nature. We’re also encouraged to mask on a daily basis when people judge us about being autistic. Then when we mask successfully, we’re told we don’t look autistic.

 

 

For example, I’m often told that I don’t appear autistic. After all, when I hold a conversation, I appear pretty “normal”. I am told I can hold down a reciprocal conversation that doesn’t sound stereotyped or like I’m scripting. I ask people about their interests, for example. Now that it’s been extremely hot here for a few weeks already, I have even mastered some smalltalk about the weather.

 

 

This obviously (to me) does not mean I’m not autistic. Autism, despite what many people think, is not about social niceties. Autism is not the same as a lack of interest in others. Besides, I have 32 years of experience being told how selfish I am for not appearing to show an interest in others. So instead of showing a genuine interest in the people and topics I’m genuinely interested in, I learned to appear to be interested in whatever and whoever I am supposed to be interested in. In other words, I learned to mask my autistic curiosity.

 

 

For example, I was eleven when my mother told me I might be institutionalized if I didn’t become more age-appropriate. My having too many toys and dolls, according to her, contributed to my challenging behavior and I was to get rid of them. Instead, I was supposed to develop an interest in music. I wasn’t all that sophisticated at the time, so rather then developing a genuine-appearing interest in music, I hung Backstreet Boys posters on my wall.

 

 

Similarly, I was encouraged to wear jeans rather than sweatpants even though jeans were a sensory nightmare to me. It was assumed that I wore sweatpants because I didn’t care about my appearance – which is partly true – or because I, being blind, didn’t know that my peers were wearing jeans.

 

 

Masking can become so internalized, apparently natural, that you no longer notice you’re doing it. For instance, I wear jeans without a problem now.

 

 

It is easy to assume that, because the autistic person no longer notices that they’re masking, it must not be affecting them. This often leads to the assumption that, if someone doesn’t appear autistic and isn’t acting out, they must not be autistic after all. Then people go on to assume that, if said neurotypical-appearing person does act out, it must be “manipulativeness”.

 

 

I am, however, definitely masking when I wear jeans, or listen to my husband’s favorite radio station in the car, or engage in smalltalk about the weather or someone’s upcoming vacation. It isn’t always a negative thing, but it is still masking.

 

Song Lyric Sunday: Drink

Posted on by Astrid

Yay, it’s time for Song Lyric Sunday again with the lovely theme of “Drink”. The song I’m sharing was introduced to me by my husband. He at one point was big into punk and Oi! music. As a result, I had to listen to songs by bands such as Booze & Glory and Cock Sparrer. I have come to love some of them too, including this one by The Business. For the record: I don’t drink and I cannot drive.

Song Title: Drinking and Driving
Song Writer: couldn’t find
Band: The Business
Release Date: 1985

Half past 5 I’m in the pub
Six O’clock it’s home for grub
Eight O’clock I’m back to the bar
Sod the walk I’ll take the car

[Chorus]

Knock it back
Have another one
Drinking and driving is so much fun

In the motor off you go
Not too fast and not too slow
Keep your head and keep your cool
Must avoid that rightful pull

As you meander down the road
Don’t forget your highway code
See the spot and take your pick
Out of the car to be sick!…

It Was the Summer of 2007

Posted on by Astrid

Today, for the first time in a long while, I’m linking up with Finish the Sentence Friday (yes, on a Sunday, but I wasn’t inspired on Friday). The prompt this week is “It was the summer of…”.

Last Wednesday marks eleven years since I started living independently in the city of Nijmegen, where I’d go to university. It was a Wednesday back then too. It was the summer of 2007. We’d had a heatwave in July, but as far as I remember, the weather wasn’t good in August.

On August 1, 2007, my parents drove the 40’ish miles from the independence training home in the city of Apeldoorn to Nijmegen with me. The car was packed full of my belongings. While the training home apartments were furnished, I still had some ofmy own furniture. Besides, my new apartment was only partly furnished.

I didn’t feel much on my way to Nijmegen. I was drugged up with the antipsychotic a psychiatrist had prescribed just a week before. I still find it rather weird that I’d started a new medication just a week before a majr transition, because how would we know whether it was working then?

When my parents had put together my new furniture, we went to the nearby Chinese takeaway. I had learned to cook in the independence training home, but I don’t think my parents trusted me enough to do it for them.

After finishing our food and putting the leftovers in the fridge for the next day, I crashed. I cried. I still find it painful to remember, as I was always taught not to cry. My mother saw me cry, whcih was terribly embarrassing. She didn’t comfort me. I was 21-years-old, after all, and no longer my parents’ responsibility.

Good Mother Messages

Posted on by Astrid

I am currently working in the book The Emotionally Absent Mother by Jasmin Lee Cori. My first response to it was: why mothers? I was, after all, raised primarily by my father in my early years. Since my mother didn’t breastfeed me, I’m not even sure she was there much at all when I was an infant. Besides, I spent the first three months of my life in hospital, so didn’t have either parent as a primary caretaker then. As such, my main reason for downloading the book was to work through emotional hurts from my past regardless of which parent inflicted them on me.

In the first chapter, the author talks about “good enough” parenting. She goes on to list “good mother messages” children raised by good enough mothers received. Today, I want to share these and my thoughts on them.

1. I’m glad that you’re here. This message shows that as a child we’re wanted. It isn’t black-or-white though, since many children feel unwanted at times, but this message can be countered by a greater sense of being wanted. Some clear memories pop up into my mind now. The countless times my parents, mainly my mother, threatened to institutionalize me when I attended a school for the blind as a non-residential student from age nine to twelve. Also, when I was fourteen, I was rejected for a summer camp and had a meltdown. At some point, my parents were angry and so was I. I said they’d just as well put me in a children’s home, at which point my father said: “None wants you.”

2. I see you. This message is conveyed through our parents knowing what we’re interested in, how we feel about things, etc. I am not sure about this one. On a deep, emotional level I feel consistently unseen, but no clear memories pop up. My father was relatively tuned in to my interests.

3. You are special to me. The author points out here that this message needs to be paired with us being seen for who we are. Yes, so true. I was seen as special, a genius even, by my mother, but only for superficial achievements such as calendar calculation. I hated this.

4. I respect you. God, this one strikes a chord. The author explains that a parent who sends this message, allows the child to discover and express their unique self rather than having to conform to the parents’ blueprint for them. One particular memory comes up, which isn’t a traumatic memory but is a funny example of the larger scheme of things. When I thought I was a lesbian at age fifteen, I tried to figure out whether my parents would be open to this before coming out. My mother said: “I accept you as you are, even if you turn out to be a conservative.” Well, that said enough: she didn’t accept me as I am.

5. I love you. As the author says, some children hear this multiple times a day, while others go a lifetime without hearing these words. They also need to be felt as sincere. In my case, my mother would often say “I love you” when we’d just had an argument. She was physically affectionate, but it was usually in a ritualized way. Like, I was given a goodnight kiss each night until I was at least twelve. One memory in this respect, happened when I was around eleven. My parents required me to read a certain number of pages of a Braille book. If I didn’t finish them, I could go to bed but without a kiss or any affection. This is probably a relatively minor incident, but it is again a sign of how affection was used generally.

6. Your needs are important to me. You can turn to me for help. This one is a mixed bag. I was helped, yes, sometimes too much so, but I wasn’t taught how to do things on my own. Then once I turned eighteen, my parents expected me to be fully independent. My needs are currently definitely not important to my parents. As I sometimes half-jokingly say, they fed me for eighteen years and then they thought their job was done.

7. I am here for you. I will make time for you. See above. Until I was eighteen, my parents were a relatively consistent presence in my life. They never actually institutionalized me and they’re still together. Then when I turned eighteen, they said I had to take care of myself and more or less vanished. This was clear to me from an early age on, too. As my father at one point told me, a family is like a business, it has to be run efficiently.

8. I’ll keep you safe. I am not sure. This one feels odd on a deep, emotional level. One memory that pops up though, is my parents consistently blaming me for being the victim of bullying. My parents also were pretty much the opposite of helicopter parents. Like I said, they were hardly involved in my life past age eighteen. Not that I care much now, but it feels as though I was hardly protected by my parents. The author says that those who don’t receive this message, feel small and unable to explore the world. Yes!

9. You can rest in me. I’m not sure. I don’t understand this message really. It conveys feeling at home with your parents. Definitely not. However, I don’t feel like I can be at home with anyone.

10. I delight in you. This one is mostly conveyed in non-verbal ways, of which I’m not aware due to being blind. As a result, I’m not sure of this one.

Call #SoCS

Posted on by Astrid

I just got my prescription phone call service re-approved last Thursday. The prescription phone call service is where I can call a mental health nurse at the psychiatric hospital for support when I’m not feeling well but not yet in full-blown crisis. This is for out of office hours, as I can call my mental health treatment team within office hours.

The thing is though, like I said before, I may need to be able to call someone in such cases for a long while to come. The call service got approved for six months and my nurse said we’d really need to look at whether I’d still need it after those six months. I believe I would, but maybe by that time, we’ve found another agency to fill this gap. Such as the disability service agency I get my home support and day activities from now.

I really hope that I can someday do without mental health treatment. People in FB groups were saying that I may confuse not having a mental illness with not wanting the stigma of a mental illness, when I said that maybe I’m just autistic and not borderline at all. I do obviously believe we’re multiple (ie. some form of dissociative identity disorder), but the mental health team doesn’t believe this. Fine by me. Then we don’t get treatment for that. We’re relatively functional anyway and we’d rather not have any treatment than a treatment that doesn’t validate us.

This post is part of Stream of Consciousness Saturday.

Weekly Gratitude List (August 3, 2018) #TToT

Posted on by Astrid

It’s Friday again, so it’s time for Ten Things of Thankful or #TToT. I loved all the positive comments on my post last week. My apologies to those I haven’t commented back on. One of the reasons is the fact that I struggle to comment on Blogspot blogs. However, I may also have been too distracted to comment. Anyway, with no further ado, here are the things I’m grateful for this week.

1. Having had a barbecue with the in-laws. That is, my mother-in-law wasn’t there, but my father-in-law and two sisters-in-law were. The food was delicious and we had a great time.

2. My having lost weight despite not following a healthy diet too strictly and not having exercised much at all. I really hope and in fact I believe I can stick to this healthy’ish lifestyle for a long while.

3. The fact that I click well with the Center for Consultation and Expertise consultant assigned to my case.

4. Good sleep in spite of the hot weather. It’s still over 30 degrees Celsius at midday. Like I said last week though, my husband got us a fan for in our bedroom. As a result, I’m sleeping pretty well.

5. Watching documentary series on Netflix. I haven’t completley figured it out, but it works okay.

6. The fact that my computer hasn’t died yet. It is over four years old and incredibly slow, has two broken keys and many programs aren’t working. I cannot get a new computer yet though. After all, for a new computer, I’d need a new version of my screen reader, which is very expensive and won’t be paid for by health insurance unless I get a prescription from a blindness agency, for which I’m on the waiting list. Thankfully, the two broken keys aren’t letters and I have gotten used to the slowness of things.

7. On a related note, the fact that I finally figured out how to subscribe to blog feeds in my favorite feed reader on this broken PC. This used to only work in Firefox, which is one of the programs no longer working with my outdated screen reader. However, I finally worked my way around this and can now subscribe in IE. This means I can finally follow new blogs I discover.

8. Having still kept up with this blog. I don’t write as much as I did last week, but at least I still manage to write at least one blog post everyday.

9. Snack veggies. My husband bought a bucket of cherry tomatoes and a bucket of snack cucumbers on Tuesday, but I forgot about them until he reminded me yesterday. Now I can enjoy snacking without guilt.

10. The hugs, cards and presents I got from the people at my now old day activities. The leave-taking was bittersweet but I truly loved how nice everyone was.

What have you been thankful for lately?

Saying Goodbye at Day Activities

Posted on by Astrid

Today was my last day at my now old day activities. It was a good day. My assigned support worker wasn’t on my group today but she was in the building. Yesterday already, another support worker I like came for a cup of coffee on her day off so she could still say goodbye to me, as she doesn’t work Fridays either.

First, I had a cup of hot chocolate. I usually drink coffee but wanted a treat. Don’t tell me it’s summer and hot chocolate isn’t a summer drink, because I just loved the sweetness. Then, like most mornings, I went for a walk with one of the staff. It was lovely walking by the river.

As the other clients arrived, we had coffee and fruit. The people on my group are all profoundly intellectually disabled, so they probably don’t understand that I’m leaving. As such, I didn’t make a big deal out of it at my group.

I had decided to go make ham and cheese sandwiches at the group my assigned support worker worked at today. They make ham and cheese sandwiches each Friday and I’ve participated a few times before. First, however, I gave each of the staff at day activities a tiny handmade soap that’s shaped like an apple.

When we were making the sandwiches, the people from the industrial group that I originally started day activities at, came over. They handed me a card and a Winnie the Pooh coloring page that a woman I’m close with had colored. Unlike the people at my group, they and particularly this woman did understand that I was leaving.

Then, they gave me some gifts the staff had bought for me. I got a smoothie cup with a straw, because I love making smoothies and milkshakes. I also got a lovely unicorn soft toy. It is white with a lilac tail and rainbow-colored hair. I sleep with like six stuffed animals in my bed and have two more in my favorite chair in the living room. Now the unicorn has joined those two. I challenge my readers to think up a name for her.

Lastly, I got a lovely set of body care products. They are a body scrub, a body butter and body mist. I have a huge collection of body care products already, but these truly smell awesome!

Leave-taking is bittersweet, but I truly hope to have a good time at my new day activities and to not have to say goodbye there within at least a couple years.

Challenge: The Skill of Dialectics

Posted on by Astrid

“The best person you can become is yourself.” I once read this in an advert for a personality disorders treatment center. It seems so true, and yet it suggests that people with personality disorders are not being themselves. As if a personality disorder is somehow superimposed upon the otherwise healthy person. That’s probably not how it works.

I was reminded of this as I thought of my meeting with my mental health nurse today. I was very open about my thoughts regarding treatment and its effectiveness and my maybe wanting to stop it. The challenge, in this respect, is figuring out which aspects of myself I still want to improve on and which I want to accept as part of myself.

I clarified that I’m afraid treatment is always focused on making the patient more independent. That’s not a problem, but it is when practical independence comes at a cost to autonomy. I am and will always be multiply-disabled. No amount of mental health treatment will change that. My nurse agreed, but said that she doesn’t feel I’m at a point where I can accept myself and just live yet.

The biggest challenge in my life seems to be and always has been to find the right balance between apparent opposites. Between my intellectual capacity and my social-emotional disability. Between my wish for autonomy or self-determination and my need for support. Between my desire to progress and my desire to just be.

I remember several years ago checking out a dialectical behavior therapy self-help manual that started with the skill of dialectics, of finding the right balance between two opposites. This is such a cool skill. I think I’ll accept the challenge and work this skill again tonight.

I am joining RDP #63: Challenge with this post.

Weight Loss, Yay!

Posted on by Astrid

I have some awesome news! I’ve been trying to lose weight for the past fourteen months. It’s been going with a lots of ups and downs. I was at 79.8kg (176lbs) last year in June when I started trying to lose weight. Then, I set a goal to be under 70kg (154lbs) in a year’s time. That would mean a BMI below 30, which would mean I’d be just overweight and no longer obese.

Well, long story short but I didn’t reach that goal. That is, I did, last January, but then I stood still for a while and started gaining weight again last May. As a result, by June, I was at 71.6kg (158lbs). My husband said to motivate me that I may not have gotten an A for weight loss but I did get a B.

By the end of June, I’d still not lost weight, so I talked to my husband about what to do. He said he’d be more careful with my portion sizes (he cooks and serves my food). I also started a food log for accountability.

Well, guess what? I lost weight again and now am under 70kg! I’m in fact at 68.9kg (roughly 152lbs). This means I surpassed my low weihgt of last January. I am so proud!

Today, I did have a few treats, but I’m pretty sure i’ll make up for that tomorrow. After all, I hardly buy junk food anymore and my treats are usually fruit. Which I love!