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.

Friendly Fill-Ins Week #115

Posted on by Astrid

I discovered Friendly Fill-Ins already a few months ago and participated on my other blog a few times. However, I didn’t like it that my posts always came out way shorter and less “serious” than I intended my blog for. I felt they were cluttering my blog. Well, since this blog is quite chaoitc anyway, I’m giving it a try here.

This week’s questions are:


  1. I deserve a gold star for _________________ today.

  2. Right now, I am loving _____________.

  3. The best advice I’ve ever been given is _________.

  4. If I had to choose a new first name, it would be _________.

My answers

1. I deserve a gold star for blogging so much today. This is my third post for today. I have a rule on my other blog that I can’t post more than once a day and I can’t post less than once a month. Also, posts have to be at least 300 words long, because I seem to remember shorter posts (especially without pictures) are bad for your Google ranking. Now, on this blog, I don’t care about my Google ranking.

2. Right now I am loving the WordPress community. I guess I take my other blog a little too seriously, because I didn’t like connecting with personal/journal-style bloggers. IN fact though, I love this type of bloggers and am so glad to be interacting with them now.

3. The best advice I’ve ever been given is to live your life. I don’t really know who said that, and maybe it’s a combination of advice I’ve received, but I agree. My life is mine alone.

4. If I had to choose a new first name, it would be… I really have no idea. We’d each want our own first name and we have one already. (For those who don’t know, “we” refers to the multiple selves or alters who share this body.) I don’t think we could have one name that we all agree on.

Song Lyric Sunday: Street

Posted on by Astrid

I just discovered Song Lyric Sunday and the theme for this week truly appeals to me. It is “Street”. Not that we’re required to stick to the theme, but I love me some challenge. Oh well, this was a pretty easy-peasy one. My biggest challenge was choosing between my two favorite songs involving “street”.

I am a big country music fan. I love the guitars, the energetic rhythm and the general feel to them. I also love most of the lyrics. Don’t tell my parents, as they’re pretty politically correct leftist folk music fans.

One day, I decided to play a pretty random country music playlist on Spotify. The first song that I truly loved was by Bobby Bare. I don’t remember which it was. I looked for more songs by him. One of them is “Streets of Baltimore”.

I was born in Rotterdam, the Netherlands’ second-largest city, and grew up in a city of 150,000 people too. My husband, on the other hand, feels the city he grew up in is a large city with 11,000 residents. He loves living in a rural area. So, when I discovered “Streets of Baltimore”, I joked my husband could play this song if I ever want to move to a really large city again.

Song Title: Streets of Baltimore
Song writers: Tompall Glaser and Harlan Howard
Singer: Bobby Bare
Release Date: June 1966

I sold the farm to take my woman where she longed to be
We left our kin and all our friends back there in Tennssee
I bought those oneway tickets she had often begged me for
And they took us to the streets of Baltimore.

Her heart was filled with laughter when she saw those city lights
She said the prettiest place on earth is Baltimore at night
Oh well, a man feels proud to give his woman what she’s longing for
And I kind of liked the streets of Baltimore.

Well, I got myself a factory job, I ran an old machine
I bought a little cottage in a neighborhood serene
Yet every night when I came home with every muscle sore
She would drag me through the streets of Baltimore.

Well, I did my best to bring her back to what she used to be
But I soon learned she loved those bright lights much more than she loved me
Now I’m a going back on that same train that brought me here before
While my baby walks the streets of Baltimore.

Yes, my baby walks the streets of Baltimore…

✏

Practising Self-Care

Posted on by Astrid

Yesterday, carol anne of Therapy Bits asked a question about self-care. This really got me thinking. Is self-care a challenge for us? How do we practise self-care?

Self-care can really be interpreted in several ways. Sometimes, what is self-care one day may be the opposite the next. For example, many people see self-care as pampering yourself. While this is good in moderation, it can become destructive if done too much. For example, we like to buy ourselves comfort food as self-care. However, this used to quickly turn into overeating. Now we recently realized that a small bag of sugar-free candy is just as enjoyable as a large bag of sugary candy and it is a lot less unhealthy.

Remember, any self-care activity can turn destructive if done in excess. We happen to be the classic overindulgent type, but exercise or healthy eating can also become an obsession.

We definitely find self-care a challenge particularly when we feel depressed. Like I said, we’re the overindulgent type, so then we sleep and eat all day. When we aren’t depressed, self-care comes relatively easy.


There are a variety of self-care activities we like. For example, we like to practise yoga and mindfulness. We also love the sensory room at day actvities.

Writing is also a good self-care activity for us. I am happy that we relaunched this blog, so that we can write without the pressure of having to create “good” content, as this was realy holding us back on our other blog.

We also try to take good care of our physical health. We are overweight and have been trying to lose weight over the past fourteen months. Though it’s been somewhat successful, it’s not been as successful as we hoped it’d be. We recently started a food log again, but we can’t keep up with it everyday. We try to exercise regularly too, though over the past few weeks that’s been hard due to the hot weather.

What do you do to practise self-care?

Quote of the Day (July 28, 2018): No-One Makes Us Feel Inferior

Posted on by Astrid

“No one can make you feel inferior without your consent.”―- Eleanor Roosevelt

This is so beautiful! It pretty much says that you’re yourself responsible for your feelings. NO-one “makes” you feel anything. I won’t go as far as to say we choose our own feelings, but we have remarkable control over our thoughts and our thoughts influence our feelings.

If someone tries to make us feel inferior, it’s our choice to rise above it and see this as something about them, not us. Another person does not define us – we define ourselves.

That doesn’t mean it’s easy owning our feelings. We struggle with this a lot. We are often told we have an external locus of control and that’s probably partly true. In oter wrods, we look to other people or circumstances to “make” us feel good. That’s not how it works and I realize this.

Of course, being a trauma survivor, I do not need to blame myself for having post-traumatic symptoms. A mental illness is not a choice. On the other hand, it’s not my abusers’ or anyone’s responsibility to make me feel better either. In our case, most of the trauma we endured was not intended as abuse. That doesn’t change its effects, of course. It doesn’t mean we don’t suffer and we are allowed to hold the people who hurt us responsible for their actions. But not for our feelings.

This does not mean the trauma we endured is not an explanation for our symptoms. It is. However, it’s not an excuse to wallow in self-pity. Enduring trauma is not a choice. Having post-traumatic symptoms is not a choice. Recovery, however, is a choice.

The Last Book

Posted on by Astrid

Today’s question of the day over at My Inner MishMash is: What was the last book you purchased or borrowed at the library. I loved this question so am going to answer it here.

I rarely borrow books through the Dutch library system. I am a member of the library for the blind, but use it mostly for the access to magazines, as I prefer English-language over Dutch books. As such, I’ve not downloaded a book out of the online library in months. I also have a subscription to Bookshare, an American-based book service for print disabled people. However, since the software I use to read Bookshare’s books won’t boot anymore, I don’t read books from Bookshare really anymore and won’t until I’ve either figured out a mobile app or bought a new computer.

I also used to buy books in EPUB format from Kobo. The software I use for reading those files, Adobe Digital Editions, however has destroyed several of my eBooks already. I was so happy when I recently discovered Kindle. I love it.

I haven’t downloaded that many books on Kindle yet. The last one I bought was Journaling: This Is My Life by Emilee Day. This is a book of journaling tips and writing prompts. I bought it because I looked for inspirational writing prompts and this one looked to be the best for its cost.

Besides this one, I have a ton of books and files containing journaling prompts in my Adobe Digital Editions, in my Bookshare books library and scattered on my computer. I just love them. It’s not even that I use them for direct inspiration often, but having these books does motivate me to write. Or so I like to think. Some of these prompts are really thought-provoking. I must say the Emilee Day book is a little disappointing as far as I can tell now.

Weekly Gratitude List (July 27, 2018) #TToT

Posted on by Astrid

Today, I’m participating in Ten Things of Thankful (#TToT). I have been looking at this link-up for a few weeks and wanting to participate, but somehow, never managed to actually go about it. I don’t promise I’ll be able to share ten things I’m thankful for right now, but I’ll try.

1. Sunscreen. It’s incredibly hot and sunny here. So hot in fact that it’s not funny anymore. I originally wrote “sunshine”, but then realized at this point I’m not thankful for the sunny weather anymore. I am, however, thankful for sunscreen. I recently started on a new medication and the doctor didn’t tell me it can cause photosensitization, which means you burn more easily when in the sun. This I’m not amused about, as I did explicitly ask about risks or side effects. It’s summer, man! It’s over 30 degrees Celsius. Thankfully I found out before starting the medication.

2. My sun hat. My husband bought it for me last year provided I promise to wear it. I never kept that promise until this week. It looks pretty cool on me or so I’m told.

3. Fresh fruit. Last Wednesday, I went to the supermarket with my mother-in-law and bought some peaches and blackberries. I’ve eaten them all by now, so maybe I’ll need to ask my husband to buy new fruit or take a trip to the supermarket myself again. I love love love fresh summer fruit!

4. Focaccias. Don’t know whether I spell this right, but they’re delicious and my husband bought some for us earlier this week.

5. Money in the bank. I received my disability benefits last Monday and that’s always something to be happy about.

6. My support coordinator. My main home support worker is on vacation now, but my support coordinator is thankfully able to fill in for her somewhat. This means I’ll at least have some home support.

7. My mother-in-law. She tries to come by on the days that I don’t see my support coordinator. I’m truly grateful to have her.

8. The fan my husband bought for in our bedroom. Thankfully, they weren’t all sold out by Wednesday, so I slept really well last nght in spite of the heat.

9. Being back in the blogging mood again. For those visiting from #TToT or otherwise unaware of this, I have been blogging on WordPress ever since 2007 and on other platforms ever since 2002. I have a terrible habit of dropping in and out of the blogging mood though. It seems it relates a lot to my general mental state. As such, I’m hoping to stay in this mood for a while.

10. Soap making. I made melt and pour soap again yesterday, this time with the help of my support coordinator. It makes me so thankful to have seen the result when she did the pouring bit, which wasn’t much better than mine. I don’t mean this to offend her at all, but it’s good for my self-confidence to see sighted people make a mess too.

Yay, I succeeded! What have you been thaknful for this week?

Quote of the Day (July 26, 2018): The Way to Get Started

Posted on by Astrid

“The way to get started is to quit talking and begin doing.” – Walt Disney

This sure has to got to be the motto for this blog. And maybe for my healing journey as a whole. I may talk healing, but if I don’t work hard in therapy and such, I’ll not accomplish much.

This also reminds me of a conversation we had a few days ago with our husband. I said I miss talking to him, really connecting to him, like I did when I allowed my alters to be who they are. I thought my husband didn’t want us to be us. This isn’t the case. My husband told me to actually stop talking openness and connection and start opening up. That’s the only way to actually connect. And though that opening up involved talking, it also involved connecting on a deeper, more-than-words-can-say level. We loved it.