#WeekendCoffeeShare (September 15, 2019)

Hi everyone, how are you? Let’s catch up over a cup of coffee or once again green tea in my case. I’m joining in with #WeekendCoffeeShare.

If we were having coffee, I’d share that this week was full of ups and some downs, though the downs weren’t as low as I’d expected. As regular readers of this blog know, I will be moving to the care facility in Raalte in eight days. My staff, my husband and I have been doing some preparation in regards to my leaving my current day activities and going to start up in Raalte.

If we were having coffee, I’d share that I finally told my mother I’ll be going to the care facility. I sugarcoated it a little, saying I’d be staying at my care agency in Raalte during the week and going home to my husband on week-ends. As a result, at first she wasn’t sure I’d be actually sleeping at the care facility. After a little “but I thought you were doing so well” and all, she wished me good luck at the place.

I am not 100% sure how to feel about it. In a way, this seemingly supportive attitude contradicts my memories from years before and that is hard to adapt to. However, I’m trying to be gratefulfor her support. I haven’t talked to my father or sister about it yet.

If we were having coffee, I’d share that my sister gave birth to a baby girl, Janneke Sietske, last Tuesday. She is named Janneke after my sister’s and my grandma who died last year and Sietske after one of my brother-in-law’s grandmothers. Janneke had some health issues early on and we haven’t been able to visit yet. We’re planning on visiting her next week though.

If we were having coffee, I’d share that today, my husband and I made some small banana soaps for the staff at day activities. I’ll give them to them on Friday, when I have my leave-taking party.

If we were having coffee, I’d share that my last appoitnment with my nurse practitioner went okay. He has referred me to the mental health agency in Raalte. I haven’t seen the referral letter, but he said he’d written about my trauma but that, for now, here and now work is most appropriate for me. I did try to get it through that ultimately, I do want to process my trauma. I’m not sure that will happen, as most likely I can’t get trauma therapy without at least a C-PTSD diagnosis if not DID/OSDD. Precisely getting my trauma-related issues assessed is a huge trigger for me.

If we were having coffee, lastly I’d share that I finally finished The Fault in Our Stars, which I started reading already three weeks ago. I will hopefully be able to finish at least one more book before the end of the month.

What’s been up with you lately?

Working On Us Prompt: Family Relationships and Boundaries

This week’s Working On Us prompt is about relationships and boundaries. I am going to focus in my post on my relationship with my family of origin.

As regular readers know, I don’t have the best relationship with my parents. They are very unsupportive of me regarding my mental health and disabilities in general. They, in short, believe that I refuse to accept my blindness and for that reason, choose to make up my other disabilities, including mental illness, to have an excuse to be different. They say I somehow crave attention and therefore want to manipulate everyone into providing me care.

Well, let me be very clear that I do not choose to be mentally ill or autistic. In part, my mental health issues are in fact trauma-based, having been caused by my parents’ mistreatment of me.

For this reason, I’ve had to set some boundaries with my parents. None of these I voiced towards them yet. I, for example, have them, as well as my sister, on restricted access to my Facebook, which means they don’t get to see posts I set to friends only even though we are technically Facebook friends. My sister is generally less eager to voice her opinion, but she for all I know 100% agrees with my parents. My brother-in-law isn’t really any bad, but I have him on restricted access just in case. When I created this blog, I purposefully didn’t link it to my Facebook, so that my parents and sister are less likely to find it.

Another boundary is not having told my parents or sister that I’m going into long-term care. I am going to officially disclose my going into long-term care on the afternoon or evening of the day I move to the care facility. I have already had a dozen scenarios run through my mind of how they will respond. They may already know, of course, and never have told me in order to keep the peace. They probably don’t know though. In that case, they may decide to estrange themselves from me, or they may try to talk me out of being in long-term care. They may, in the best case scenario, say it’s my choice and my life.

As far as respecting my boundaries, I’ve never set truly firm boundaries with my parents. I may have to soon, in case they want to talk me out of being in long-term care. I may even have to go no contact with them myself.

In case you are wondering who supports me, I do have my lovely husband and his parents. My husband of course will be missing me when I go into long-term care, but he 100% supports me nonetheless.

The Daily Four (August 26, 2019)

Over at A Guy Called Bloke, there’s a new meme called The Daily Four. I found the questions very inspiring, so I’m participating today.

What was the worst thing you did as a child?
I wasn’t a very naughty child, but my parents claim I terrorized the family. Being autistic, I’ve done a lot of destructive things during meltdowns. I ran away quite often and, according to my mother, was physically aggressive towards her as a teen. One day in particular, I remember ruining my sister’s birthday party (I think it was her 10th birthday) with my meltdown.

Growing up, what was your ideal dream job and did you bring that to a reality at all?
I’ve always wanted to be a writer. Though I only had one piece published in an anthology, I am pretty sure that blogging is a dream come true. I always thought that, like Anne Frank, I’d have my diary published someday. I guess I didn’t realize how unimportant my life is compared to hers.

What were the things you both liked and hated about your schooling?
I was often bored at school during my years in special education, but I liked it there nonetheless. At least I had friends, something I cannot say of my time at grammar school. What I most hated though, was the loyalty conflict I had, because my parents were in constant fights with my school over my needs.

Where there is a will, there is a way! Do you agree?
Yes, usually. Some dreams are unrealistic, but there’s always a way to come close. For example, of course, I will never be a plane pilot, being blind, but if I wanted to, I could arrange to see the inside of an airplane. In fact, I did at age twelve.

#WeekendCoffeeShare (July 14, 2019)

Yay, it’s Sunday! I am once again joining in with the #WeekendCoffeeShare fun. It’s relatively early for me to write this post, so the most recent drink I had was actually coffee. I usually drink only one cup of coffee at breakfast )or lunch, as it was nearly afternoon), but my husband made me a second cup saying it’s good for the heart. I don’t know whether that’s true, but oh well.

If we were having coffee, I’d share that my husband picked up my new Windows laptop on Monday and installed it on Tuesday. The adaptive tech guy came by on Wednesday to bring me a new Braille display and install the JAWS screen reader on my computer, so that I could actually use it. I have been playing with my computer ever since. I hope the tech company will get me training on the screen reader and Windows 10, but even without training, I like this computer much better than my Mac. Right now, my husband is resetting my Mac, so that my mother-in-law can have it. I think I just closed the tab with instructions on it from my iPhone.

My mother-in-law offered to pay more for the Mac than the Windows laptop had cost, but we refused. I don’t want to get extra money from switching computers.

If we were having coffee, I’d also share that I visited the living facility in Raalte that’s with my current care agency on Wednesday. It was great. There’s tons of sensory equipment in both the house and day center. The staff are also really nice. The house they felt was the most suitable for me, has twelve clients living there. There are two staff during the day and an extra staff during times the clients get showered and such. The manager and care consultant were a bit vague about the waiting list to move in, but I hope to hear more about that soon.

If we were having coffee, I’d share that yesterday, my husband had the yearly driver’s day at his work. He is a truck driver for a large transporting company and the driver’s day is sort-of-mandatory. I spent the day at my in-laws. Well, my father-in-law had just left for vacation, so I was alone with my mother-in-law. We went for a walk with her dog. Wow, it was hot and humid! My husband came to my in-laws’ house after a few hours when he’d had enough of the event at work. My mother-in-law cooked us dinner, although she was interrupted to pick up a kitten from the animal shelter. She volunteers to bottle-feed kittns that are too young to be kept at the shelter. The kitten was lovely!

How was your week?

Thankful Thursday (May 30, 2019): My Mother-In-Law

It’s Thursday and I haven’t blogged in a few days. I’m feeling the pull of depression worsen and that’s not helped by the fact that I still am not done with the long-term care application process. My husband, in-laws and support staff try to remain positive, but I’m having a really hard time of it. I haven’t updated my list of alters on this blog in a while and several have recently emerged. Some seem like they’ve been around longer, but a recent disappointment in the care application process caused us to split again too. I don’t know whether that’s even possible or it’s a sign of us being a fake dissociator, but oh well.

Thursday means it’s time for Brian’s weekly Thankful Thursday blog hop. I only participated once before and that was when I’d just seemed to lose hope that my situation would ever improve. Because the long-term care laws would be changed in 2021 to allow the mentally ill access, I said that by then everything would fall into place. It looks more like that than ever now. Only thing is, I’m pretty sure I can’t hold on that long. But I digress. This post is supposed to be positive.

Today I am most thankful for my in-laws. When I got the latest disappointing news on Tuesday, my mother-in-law offered to pick me up from day activities. This was unrelated, but it couldn’t have been more coincidental. I spent the evening with her, my father-in-law and my mother-in-law’s niece, who temporarily lives with my in-laws. I spent yesterday evening there too, meaning I had to spend a manageable amount of time alone.

Today is a bank holiday and tomorrow, my day activities is closed too. Since my husband does have to work, I would’ve had to spend the day alone at home if not for my mother-in-law. She offered to come by in the morning for a cup of coffee and in the afternoon too for either tea or to take me to my in-laws’ house if my husband would be home from work late.

I am also thankful for my support coordinator and support worker. Next Monday, my day activities will be a bit short-staffed so I can’t go for the weekly Monday-morning walk, as there’s no-one to guide me. However, my support coordinator offered to come by in the afternoon to take me on a walk. She’s also been incredibly supportive of me during the latest developments. My husband said she deserves half a truck filled with Merci chocolates for all the work she does for me. And I agree. My mother-in-law deserves the other half of the truck.

Who Am I Right Now?: Exploring My Identities #AtoZChallenge

Welcome to day 23 in the #AtoZChallenge. I had a topic for my W post in mind for a few weeks, but then wasn’t sure whether to pick that one. I am doing so anyway. Today, I am exploring the things that make me me. My “identities” can, of course, refer to my alters too, but I covered that topic in my letter M post already. Today, I am exploring my different roles.

I am a daughter. My parents are still both alive. I was a granddaughter (and some would say I still am), though my last living grandparent died in 2018. I am a sister and an aunt-to-be, since my sister is 20 weeks pregnant.

I am a wife. I have been together with my husband nearly 11 years and married over seven. My husband is by far the most important person in my life. Through him, I am also a daughter-in-law and sister-in-law. My mother-in-law is the second most important person currently involved in my life.

I am a blogger. I’ve had one blog or another ever since 2007 and really have been an online writer since 2002. I am also an author, though I’ve had only one small piece published in an anthology. It makes me proud nonetheless.

I am an advocate. Though I don’t engage in as much activism as I used to about ten years ago, I still consider myself a disability, mental health and autistic rights advocate.

I am a believer. Though I subscribe to “something-ism”, it does help me to feel connected to a higher power.

I am mentally ill. I am autistic. I am blind. I am multiply-disabled. I am a benefits claimant. I am a service user at a day center for people with intellectual disabilities.

These last few identities may be the most defining of me when I tend to introduce myself. That’s why I listed them last here. I need to learn to focus on the others.

Dealing with Some High School Memories

We are struggling quite a bit. We hardly know why, but yesterday, a memory appeared. It’s not like we weren’t aware of this having happened before, so it’s not a repressed memory. However, it still feels as though only certain insiders can “own” the memory, if this makes sense.

This is hard, because we got told last Thursday by our nurse practitioner that it’s good people aren’t validating our experience of dissociation. For example, they’re reminding us that the body is 32 and we’re all Astrid. That may be so, but it’s only getting us to further disconnect from ourselves.

He told us that being a child at heart is not wrong, but claiming to be a child is. Or something like that. He more or less told us to look beyond the emotional parts’ words to what was actually troubling us. For example, Jace saying she has to move out by age eighteen meant we’re afraid we won’t get long-term care funding. Fine by me but I think it’s not that simple. I think this may be an actual memory bothering Jace and it was just triggered by the long-term care stuff.

Anyway, yesterday evening we started experiencing high school memories. Our high school tutor was our safe person at the time. We trusted him more than we did our parents. Our parents weren’t okay with this. When in ninth grade, we had been struggling and our schoolwork was suffering. Our tutor asked us to tell him what was going on. We wrote it down. Then our tutor told our father, who worked at our school. He refused to disclose what we’d written though. I understand this, but it got our parents angry and led to an incident of bad mental abuse.

Anyway, like I said, this tutor was our safe person. He was the first one to know about our being multiple other than a handful of readers of my online diary at the time. He wasn’t impressed by it as much. In fact, he told us we’re just manipulative. This got us to go in denial and not tell anyone else.

It still upsets us that we could’ve had a chance for real help if we hadn’t been in denial at the time. I mean, the tutor told our first psychologist about our experience. This psychologist suspected DID, but we denied everything. It’s understandable, because we were still in somewhat of an unsafe situation at the time.

We trusted our high school tutor, but he betrayed our trust in some rather overt ways. He told our parents that we suspected we were on the autism spectrum. Not that there was no other way for them to find out, as we wrote about it in our public online diary. However, he told them that we’re a hypochondriac for it. In this sense, he was on our parents’ side. And yet, we didn’t see it.

Then again, is it okay for me to think in terms of being on someone’s side or not? I mean, our parents were supportive in some ways. Our mother was at least. Our father was and still is too self-absorbed to actually care about anything other than his intersts and opinions. It’s not black-or-white. People can be good and still do bad things. Or something like it.

Was I Sometimes Raised as a Golden Child?

I have been feeling really off lately. I keep having flashbacks. I also keep having what I’d describe as flashforwards, where I imagine my parents’ reaction to the different possible outcomes of the long-term care situation. These then lead to more flashbacks. One particular flashback I keep having is to a phone conversation I had with my mother when I’d just been admitted to the mental hospital in 2007, or maybe it was shortly before then. She yelled at me “You can’t even wipe your butt without your support worker there”. While this was and still is exaggerated, I do have issues with my personal hygiene, including sometimes with toileting.

I have noticed that there’s a lot of shame attached to my needs. Like, there is this constant nagging voice in my mind saying that I really do manipulate everyone into giving me more care. After all, am I not getting by? This part of me is telling me to erase everyone from my life and just go live on my own, since even if I lived with my husband and no support, there was still my husband to be manipulated.

I was discussing all this with my nurse practitioner last Thursday. He said even if I do manipulate people (and I no doubt do, as does everyone else), these people also let themselves be manipulated. Like, if they have an attitude like they’d rather help me with every little thing than endure my frustration, it’s no wonder I become dependent.

There was this show on Dutch television last Sunday about a second grade class. I didn’t see it, but a term used in it that was repeated often throughout the week, was “curling mother”. I have no idea whether that’s the correct English term, but it refers to a parent who helps their child with everything until they’re eighteen and then magically expects them to have learned independence and leave the nest. My nurse practitioner was reminded of this when I described my parents. It feels odd, because even though yes my parents did help me with every little thing, this expectation that I move out at eighteen was made very explicit from an early age on. It wasn’t like my parents were hoovering over me not realizing that they’d not be there for me forever. In fact, I’m pretty sure they couldn’t wait for me to move out. It just ugh, feels so off. Like I was spoiled somehow because my parents did everything for me.

At this point, I remember a discussion in an inner child healing group in which the original poster commented on some author or speaker saying that the golden child of narcissistic parents suffers a lot. This person was confused, because the golden child is the child favorited by the narcissistic parent, the child who doesn’t get abused (or so it seems). Some people said that the golden child suffers a lot because, well, they are only the narcissist’s favorite as long as they live up to their perfect standards.

I was raised in a household where the golden child/scapegoat roles reversed repeatedly. For those not aware, the scapegoat is the main target of obvious abuse in a narcissistic family. As such, I can relate to a lot of golden child attributes. Like, I was often praised excessively, bragged about and let off the hook. Then again, I was, and this was always very clear, expected to livve up to my parents’ perfect-image plan for me. Once I stopped doing this, I was placed in a clearer scapegoat role.

It still feels off to think of myself as having been spoiled. I know Pete Walker says spoiling is a severe kind of trauma too. However, in society, it is often treated like the spoiled child is to blame for being spoiled. And they definitely aren’t. Only as adults can they choose to undo the effects of this trauma, but they have to admit it first. I have to accept this.

Gratitude List (February 2, 2019) #TToT

I didn’t write much this past week. Not because I didn’t have anything to share, but because somehow the words wouldn’t make it onto the page. I had an extremely eventful week, which I will share more about later and which I already shared a bit about last Wednesday. Today, I’m going to write a gratitude list for the past week. As always, I’m linking up with #TToT.

1. My shoulder pain being almost over. Like I said two weeks ago, I suffered a small collarbone fracture. Yesterday was the last day of my strong painkillers. I had wanted to quit them earlier, but my husband said not to be too hard on myself. Today though, I only took two paracetamol and am more or less fine. Granted, I didn’t do a lot of repetitive work, so after I’ve finished this post, it’ll probably hurt more.

2. Being able to exercise again. I went on the elliptical for a total of 35 minutes yesterday. I did take breaks, but I felt my legs more than the injured arm.

3. Sensory activities. I already shared last Wednesday about the living facility I might go into that has lots of sensory supplies. Seeing this inspired me to explore the sensory equipment at day activities more. I found a large cylinder which you can roll on. I also spent time in the small (almost too small for my overweight body, but not yet) indoors cocoon swing.

4. Buying my Macbook. I haven’t unboxed it yet, but I’m glad I finally put one foot in front of the other and bought it.

5. Stuffed animals. Today, I experienced severe overload and had a meltdown while at my in-laws. My mother-in-law brought me a huge collection of Disney soft toys and other stuffed animals. I loved them.

6. Sleep. I didn’t sleep well early in the week. Thankfully, towards the end of the week, I slept better.

7. Getting some delicious treats for myself on Thursday. Some were healthy too, like blueberries. Some were not (liquorice!) but I loved them nonetheless.

8. The day activities staff treating us to some special food on Friday. She decided to spoil us, so for lunch on Friday, we had croissants and some salty crackers with cream cheese and olives. I went to the marketplace to buy them with this staff.

9. My husband. I need to be extra grateful for him because this past week has been stressful.

10. My support coordinator, whom I saw four times this week.

What have you been grateful for this past week?

Gratitude List (January 4, 2019) #TToT

Yay, it’s time for my gratitude list with #TToT once again. I am also linking up with the Word of the Day Challenge, for which the prompt is “gratitude” today. Do you want to know what I’ve been grateful for lately? I love to share!

1. Two wonderful full days at day activities between Christmas and New Year’s. There were only about five clients there each day and two staff. On Thursday, I went for a walk with one of the staff. We also ate pancakes for lunch. On Friday, the staff drove the center’s van to a restaurant in a nearby village, where we had a drink. I had hot chocolate with whipped cream. One of the clients from my group, an older man who used to drink beers with his friends regularly before he declined from a brain injury, had an alcohol-free beer. I could tell he thoroughly enjoyed the experience. So did I.

2. Resting over the week-end. I was pretty tired from all the Christmassy stuff by last week Saturday. So was my husband, so we chose to have a lie-in. I normally feel bad about getting up at like noon and my husband doesn’t like it either, but neither of us minded.

3. Oil balls or whatever the English term is. These are fried balls made of the same stuff that pancakes are made of. They’re a traditional New Year’s snack here. I was nauseated from them for days, but who cares?

4. Not having gained any weight over the holiday season. That is, I may’ve lost then gained some or vice versa, but in any case I was at the exact same weight last Monday that I’d been in early November. I already mentioned this last Monday, but I’m still so grateful for it.

5. A long walk with my mother-in-law. On Wednesday, she visited me and we went for a walk into the next village. This was about a 5km walk that took us 70 minutes.

6. Horseback riding with my support worker. Yesterday, for the first time in a while, my support worker was available to assist me as I rode the horse. It was truly a lovely trip. While waiting on the taxi back home, a young man from my day activities came into the canteen. Once she’d made out that we knew each other, his staff prompted him: “Who’s that?” I was delighted to hear him say “Astrid!” I only see this man on one of my days at day activities and I hadn’t expected him to recognize me, so it was truly lovely that he did.

7. Fried chicken. Yesterday, my husband cooked a rather boring meal of macaroni with bell peppers and leek. He surprised me at the end by saying that, if I admitted this was the most delicious meal I’d ever had, he might have some chicken for me. So funny! We had wings and filet. I liked the filet better, so my husband gave that to me.

8. Getting a head massage. We havve a head massager at day activities. I love it and today, my staff were doing beauty stuff. I asked for the head massage first, but I also had my nails done.

9. Looking at an online store for sensory supplies with my staff. I already knew the store and have my sensory cat from there, but my staff hadn’t heard of it. They probably got the sensory room modeled by Barry Emons, the inventor of snoezelen, but his shop is harder to use and the itmes are more expensive than the store I found. I was totally excited ooohing and aaahing at all the lovely supplies and all the more excited because my staff was excited too. We might get some stuff for my day activities group.

10. Dancing. On Friday afternoon, one of the staff at another day activities group organizes a “prom” for the entire center. I only went once before, but today, I decided to go again. I loved it.

11. Eating French fries for the first time in a while. Today, my husband heard a doctor on the radio say that you need to go to the snack conrer once in a while or you’ll get fat, or so he said. The real talk was probably about crash diets not working, but I loved my husband twisting it to an excuse to get us fries. We also each had a burger with it.

12. The lovely blog interaction I’ve been involved with this past week. I’ve gotten more interested in reading and responding to other blogs and it probably pays off on my own blog too. Besides, I just love reading other blogs, as it inspires me too.

What have you been grateful for this past week?