Some Kind Words Meant the Best Part of My Day

Posted on by Astrid

Boy, am I feeling awful right now. I ate a whole bag of sugar-free candies (a small bag, but still) and now I’m having the worst bowel cramps in the history of this body. A part of me is still not convinced that I should never buy these candies again, as this part believes with their laxative effect, I’ll actually lose weight while indulging into my sweet tooth, so a double win. I have already banned myself from buying candy containing sugar, as that’d mean I’d eat a whole (usually much larger) bag too and I’d have the added drawback of it containing like 1500 calories. My goal is to be healthy though, not skinny and awful-feeling. That same part of me disagrees, but well.

To cheer myself up and to find inspiration to write a post for today, I looked at some question of the day posts on other blogs. On A Writer’s Life, last Monday, the author asked a question that could fulfill both these purposes. They asked about the best part of our day.

I had a pretty boring day today. I didn’t do much that was truly exciting. That is, I exercised on the elliptical for the first day in a while, but that’s while I was already suffering from the aforementioned bowel cramps. At day activities, I did a few things I enjoyed, but nothing that stood out majorly.

However, some kind words from my day activities staff did stand out. Yesterday, I had been taken home by taxi as usual. The drivers know the day activities in this area well as they regularly drive clients there. As such, they know that my group is for pretty severely intellectually disabled people. The driver who drove me home yesterday asked what I, being of at least average intelligence, do at that group. I did go into an explanation, which I later felt maybe I shouldn’t have. I mean, she’s just a driver, not one of my staff.

I also worried that my real staff would soon enoug find out that I’m too good for that group too. So today I asked one of the staff at my group. She said: “Because you can talk so well, people may get that impression, but we know better.” It didn’t sound like it was a blow to my self-esteem at all. She didn’t mean it to highlight my social and emotional difficulties, which are the reason I’m at this group. She just said that they’ve gotten to know me well and we’ve together decided that this is the right froup for me. Phew, was I relieved.

Movement Therapy Again

Posted on by Astrid

It’s incredibly hot (yes, it’s *still* incredibly hot) and I’m not too motivated to write. However, we had movement therapy again today and I feel pretty much obligated to share about it, since our last session didn’t go well.

I was feeling somewhat stressed but also capable of communicating my feelings at the start. I explained about having fought with the therapist about her asking for Astrid to come back. I just realized yesterday how unhelpful this can be on several levels. It’s not just that it creates a fight between us and the therapist. If the one who thinks she’s truly Astrid truly appears, she’s often quite disoriented. Yesterday she did after Marieke tried to be open about herself. I don’t know whether she’s truly the core or just a part who denies our existence. I like to view us as a system as altogether Astrid, but this Astrid part is clearly not us as a whole and can still feel quite dissociated. But I digress.

I told the movement therapist that I’d prefer her asking us to get back into an adult state if we seem to dissociate. This was fine by her, so when this had been cleared up, we could proceed with the session.

I disclosed that our mind was quite full of thoughts. Actually, it was several others chattering but I didn’t say so as to not start another argument. We then did a concentration exercise. We had to move a one-meter-long stick that was standing up from one hand to the other without dropping it. Then from one finger to the same or next finger on the other hand. This was quite a challenging activity and we liked it.

After that, we did a sensory activity with a spiky ball. I was out in the body but Marieke and Suzanne were close by. I chatted to the therapist while they felt and enjoyed the ball. After this, we did a ball-throwing activity. This was definitely calming and enjoyable. It helped that the others had already had their time close by the front, I think.

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.

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.

Consultation Meeting Today

Posted on by Astrid

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

Posted on by Astrid

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.

Last Week at Current Day Activities

Posted on by Astrid

Today is a good day so far. I’m slightly less energetic and motivated than I was over the week-end, but I wouldn’t say I’m depressed either. It feels a little strange having started my last week at my curren day activities. Next week, I start at a new place, thankfully with the same care organization.

I started at my current day activities over a year ago fresh out of the mental institution. I didn’t know it back then, but the manager had gotten the impression that it was just an emergency placement, so I wouldn’t be there long-term. It’s a place for people with intellectual disabilities, which I don’t have. As such, I assume part of the reason I was eventually asked to find another place, is that they need my spot for someone who does have an intellectual disability. The staff don’t say so of course. They say it’s better for me to find another place. I hope that my new place will
prove to be better indeed.

The new place is also for people with intellectual disabilities. They are mostly severely intellectually disabled people at the gorup I will be attending, but they are at least partly capable of their own personal care. On the group I go to now, the clients are all profoundly intellectually disabled and need considerable help with their personal care. Two of my fellow clients need one-on-one support a lot of the time.

Why, you may ask, did I end up in this group? Well, I am not intellectually disabled, but the care approach to developmental disabilities suits me much better than the one for mental illness. I started day activities last year at a group for relatively capable people with mild intellectual disabilities. They do industrial activities there. This definitely wasn’t my type of activity. Also, the constant chatter that I couldn’t make sense of, was overloading me. So I often retreated into the sensory room. I prefer sensory activities to industrial-type work anyway. The center psychologist was consulted because my behavior was getting out of hand at the industrial group and she recommended I be transferred to the sensory group, which is the one I attend now.

There, I did well for about six months. Then, my behavior spiraled out of control again when several new clients joined my group and as a result there were lots of changes. After an incident in which I self-harmed, the manager decided I’d need to leave this place. Thankfully, he gave me time to find another place. The new place is with the same care organization but in a different town.

At the new place, the other clients are slightly more independent than at my current place. Also, the staff are more used to dealing with challenging behavior. It is pretty crowded and noisy, but when I’m overloaded, I’m allowed to retreat into the sensory room. I spent a few days at the new place to see if I’d like it and I did. As such, they’re more prepared than my old place. After all, the staff there only got a bit of information about me from my institution psychologist, most of which I reckon was incorrect. After all, said psychologist felt I’m dependent rather than autistic and as a result exaggerate my sensory issues in order to elicit care. Well, I’m not.

Movement Therapy Yesterday

Posted on by Astrid

Trigger warning: strong language.

So yesterday we had movement therapy. We feel it’s really helping but we also switch a lot during this type of therapy. We’re not formally diagnosed with a dissociative disorder. Were formally diagnosed DID but that got changed to BPD five years ago. Our current mental health team’s opinion is that the “pieces” are allowed to be there but there’s no need for a dissociative disorder diagnosis or any form of specialized treatment. We do DBT individually with our nurse practitioner (not in a group because we’re autistic and would be overwhelmed by a group) and the movement therapist tries to incorporate some DBT too. We really try to fit our “pieces” into the DBT model of emotional/rationa/wise mind (we purposefully avoid the word “alters” as to not suggest we self-diagnose, as our former psychologist believed we made up the DID).

The thing is, Astrid is rarely out. That is, always when we think we’ve found the core or “real” Astrid, we realize it’s yet another alter. We don’t mind as most adults can present as Astrid and act pretty much normally. However, yesterday in movement therapy Katinka was out from the start (she’s one of the main fronters). Then for some reason Suzanne popped out and the therapist called for Astrid to come back. Katinka came back with some difficulty and explained that she’s fine being called Astrid but she isn’t Astrid. The therapist insisted that she may be Katinka now but Astrid was out at the beginning. It was quickly time to end the session and we were still pretty spacey but didn’t say so. To be honest we didn’t feel fully safe to go home yet (one of us was having destructive urges), but we didn’t say anything and managed to go home anyway.

Now some of us are thinking of quitting movement therapy or the whole mental health treatment altogether. We’ve run into just a little too many disagreements with our treatment team. I mean, they’re overall good people, not like our former psychologist who just was one giant bitch. We don’t need a fucking DID diagnosis (we’re not fully DID actually). We’re fine calling ourselves pieces or whatever, but we’re not going away. Now we’re pretty sure we’re going to be taken out of movement therapy for it destabilizing us. Well, whatever. If the goal is to keep us acting apparently normally all the time, then we don’t need nor want no fucking mental health treatment for that.

Starting Over (Yet Again)

Posted on by Astrid

I’ve had this blog for over seven years and have started and restarted it at least a dozen times. I keep being unsure of how open to be about my experience, but to be very honest, I need a place to write about my healing journey. I hope this time we’ll be successful. I don’t primarily write this blog for my readers, although I hope it’ll help some of you too. I don’t intend on going social with this blog too much, but if I make it altogether private, I’ve noticed that I miss the opportunity to interact and still feel restrained by this being WordPress. And yes, I’ve tried truly secure diary apps and sites, but none have satisfied me so far.

In case you stumble across this blog and don’t know me, I’m Astrid. That is, we’re Astrid et al, since the core of us, the “real” Astrid, is rarely if ever out. We are multiple. No, we don’t have a formal diagnosis of dissociative identity disorder, but we don’t care (or try not to care). We don’t experience amnesia much if at all, but that doesn’t make us any less real. We are a trauma-based system, but we’re fine with natural/endogenic multiples interacting too.

Here’s where we’ll share our daily struggles as well as our travels along the healing path. We’ll also post some random bits and pieces here. I hope you’ll feel welcome here.