Song Lyric Sunday: Drink

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

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

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

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

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

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

“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!

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!

Consultation Meeting Today

This is Clarissa, but a lot of us are near. I just had the meeting with the Center for Consultation and Expertise (CCE) consultant this afternoon. The CCE is an organization that helps in complex care cases where a client with a disability or illness gets stuck due to “severe problem behavior” and their quality of life is at risk. We originally started this consultation last May because we had to leave our current day activities due to our challenging behavior and were stuck in the process of finding a new place.

Now that we’ll start on our new place next week, we decided to go ahead with the consultation anyway because we still lack perspective in many respects. For one thing, we’re struggling to live independently with our husband. For another, we’re unsure as to whether the treatment we receive from the mental heath team is really the best for us. We do dialectical behavior therapy because it was recommended to us, but we really struggle to apply its skills in daily life.

One thing in this respect which the consultant said, was that maybe all this treatment isn’t working because we talk too much and do too little. Or something like that. She didn’t mean that we don’t move our arse. What she said was, our treatment is based on a borderline personality disorder diagnosis while in reality our autism, which can’t be treated, is more relevant. As such, we might do better living our life with enough support rather than constantly needing treatment.

Wow. This had us thinking. Could we really live our life without a psychiatrist and other mental health professionals on board? Sounds really dependent as I write it now, as if we depend on our mental health team, whom we mostly see every other week, to keep us functioning. But the truth is, do we really need them?

Most of us are so excited at the prospect of just being allowed to be ourselves. As it is now, we need some mental health staff for support when we need to talk and our support worker isn’t around. However, it doesn’t really take a mental health degree to help us in most of these cases. Other than that, we go to the obligatory DBT sessions with our nurse practitioner and to movement therapy, neither of which we feel is terribly effective and both of which are temporary.

I will have to give it some thought. We really most likely need support for the rest of our life, and that’s okay. Our need for an on-call support worker (now that’s a psychiatric hospital nurse) will most likely not vanish if we finish DBT. And yet our “prescription phone call” service has to be renewed every six months. If my husband and I move closer to a supported housing facility, and/or we get access to a non-psychiatric support phone line, wouldn’t that be far better? I’ll really have to discuss this with the consultant when she visits our home on August 14.

Creating an Inside Beach

Hi hi, I am Milou. I am 8-years-old and I have blonde hair. Earlier today, Allie wrote about creating an inside beach in therapy. I want one too! I really want to go back to Vlieland to see the real beach, but the bigs say I can’t. So now Esther is helping me create an inside beach. She put up real beach sounds on the computer for me to listen to.

I hear the waves. They are the North Sea waves. I love swimming in the North Sea. The bigs say I can’t go in too far.

I see the sun. It’s evening now that I write this, so the sun is going down soon. I love seeing the sunset. The sun is bright orange.

I can feel the sand under my feet. I can play in the sand. I like to build jellyfish castles. Yeah, that’s real, I add dead jellyfish to my sand castles. The bigs laugh and say it’s yuck. I can also dig a hole in the sand.

The sun has been shining all day, so the breakwaters (that’s what I’m told they’re called in English) are hot. You can stomp your foot in them and leave a footprint. You can also write your name in them with a pointy object. Read me write “MILOU”.

Oh, this was such a fun activity! Like Allie said, we can always add more to our inside beach. I can come play here whenever I want. Nighty-nighty from Milou.