In Crisis Yet Again #Blogtober20

Okay, this may not be the most appropriate post for #Blogtober20. After all, the prompt for today is “relax”. It is also World Mental Health Day. Most people would use this to advocate for better mental health services, or to share tips on coping with mental health issues. Tonight, I’m too stressed out to do either. In fact, this is just going to be a raw post on my having been in crisis tonight – and not having fully recovered yet as I write this, in fact.

I was on edge all day. By mid-morning, I started feeling irritable, but it was still manageable. When it was time for lunch, a different staff from the one assigned to my side of the home came to eat with us. We also didn’t get the usual weekend lunch stuff, such as sausages, pancakes or soup. We did get a baguette with cream cheese on it. It was okay. IN fact, I much prefer that to our weekday lunches. I don’t think it’s even the fact that I didn’t get the treat I wanted, that set me off, but the fact that so much was different about the lunch. Thankfully, after being on the verge of a meltdown for a bit, I was able to calm down.

Then in the evening, I spiraled into crisis. I don’t even know why honestly. I was getting very irritable about the staff having the TV on even though the volume was turned to low. Within the next fifteen minutes or so, I landed in a full-blown meltdown that seemed to last forever. I eventually asked the staff to fetch me a PRN lorazepam, but then somehow got it into my mind to climb over the balcony railing. I didn’t, but the mere fact that I was standing on my balcony on bare feet in the rain and disclosed my thoughts, worried the staff.

I was near a staff all the time until I had to go to bed at 10:15PM because the evening staff were leaving. They did remove the knob on my balcony door, so that for now I cannot go on there. I gave them permission for this, for clarity’s sake.

The lorazepam has started to kick in, but I’m still pretty tense. I must say that I am completely in awe of how my staff handle my challenging behavior too. It must be hard having a mentally disturbed person on an intellectual disability unit. In psychiatric care, they’d probably have sent me for a time-out off the ward. After all, psychiatric professionals commonly see me as a borderline case. I’m not sure my current place is the most suitable for me, but the staff definitely are.

#Blogtober20

If I Could Turn Back Time… #Blogtober20

Today’s prompt for #Blogtober20 is “If I Could Turn Back Time”. I think we all would do some things in our past differently if we could. I certainly would.

I mean, when I was in the psych hospital from 2007-2017, I regretted almost every step I took or didn’t take. My last psychologist was right in a way that so many places to live had passed that I’d turned down. I had turned down a shelted living place for the mentally ill, a workhome for autistics, a training home for autistics, etc. They were not suitable places for me and I completely understand I decided not to take the step. However, I particularly completely regret the step I did take to move to that last psych ward in 2013. Most of the places I’d turned down, seemed more suitable in hindsight than that last unit.

Still, now that I’m in a suitable place, I can see why the things happened the way they did and I made the choices I made. None of the places offered to me back in those early years in the psych hospital were as suitable as my current care facility is.

For the most part, this boils down to them being psychiatric living and/or treatment facilities rather than those serving people with developmental disability. You see, here in the Netherlands, autism is seen as a psychiatric condition if you have an IQ above 85. And in case it isn’t clear, the care approaches of psychiatry and developmental disability differ significantly. In particular, all psychiatric facilities are aimed at people developing their independence, or as they call it “rehabilitation”. I find this particularly unsuitable an approach to me.

Looking back, I maybe should have accepted the very first placement offered to me: a treatment unit and independence training home for autistics. Maybe the staff would’ve recognized my needs there. Or maybe not. Maybe I should’ve gone to the workhome. At the workhome for autistics, the staff did understand I needed more support than they could offer. They tried to help me and my staff find another place for me but came up with a facility for people with intellectual disability. The staff at the psych unit at the time were very understanding of my needs, but they still felt an intellectual disability place wouldn’t be suitable. You all know that I beg to differ.

To make a long story short, I’ve had quite a few regrets, but in the end, my life is good the way it is now. And that’s what counts!

#Blogtober20

Something I Struggle With

A few weeks ago, Marquessa over at The Next Chapter started a writing challenge to get herself motivated to write everyday. Yesterday, I saw that Cyranny had joined in. Cyranny started with the first prompt. That one didn’t appeal to me, so I will go to the second. It is to share something you struggle with.

Regular readers may be able to guess what I’m going to share. It wasn’t the first thing that came to mind, but I got inspired by Marquessa’s post. She shared that she struggles with being called “pretty”. She then goes on to say that brains matter more to her than beauty. Well, I wouldn’t exactly say I’m the opposite, but I do struggle with being called “intelligent”.

As a child, I was often called intelligent. My parents loved bragging about my so-called genius. After I had an IQ test at age twelve, this became even worse. The IQ test, though not the first one administered to me, was the first one about which the assessor actually told my parents the exact IQ outcome. My performance IQ can’t be measured because I’m blind, but my verbal IQ was identified as being 154 on the Wechsler scale. This means I was supposedly within the highly gifted range.

As a preteen and early teen, I didn’t mind my parents bragging about this three-digit number as much. I was proud that, according to my mother, I had the same IQ as my father. Now the only time my father had an IQ test administered, he at least told me that was in the pub with a psychologist friend and he was rather drunk. I’m assuming his real IQ may be higher.

As I grew older though, my apparent high IQ more and more stood in the way of my being myself. It was frequently used by my parents and professionals to “prove” that I should be capable of solving my own problems in social situations. This got me interested in the concept of giftedness as asynchronous development. Later, I was diagnosed with autism. Still, my parents reasoned that I was just extremely intelligent.

The reason I struggle greatly with being called “intelligent” is the assumption that I am smart enough to solve non-intellectual problems. This may be so in most gifted people – I think I remember recent research disproves the theory of asynchronous development -, but it isn’t the case for me. Like I mentioned a few weeks ago, my emotional level is equivalent to someone approximately 18 months of age.

Last year, my IQ was used against me to deny me long-term care. I mean, due to my multiple disabilities and low emotional functioning level, I do best in a care setting normally catering towards severely intellectually disabled people. Because of my IQ though, I can’t get funding based on developmental disability. I am lucky that I’m blind in this respect, because I ultimately did get funding based on that.

Contrary to Marquessa, I do not struggle with compliments about my intelligence because I don’t agree with them. I mean, the IQ test I took at age twelve is rather outdated now and I scored much lower when I took another one in 2017. However, I still know I’m indeed intelligent. That being said, that’s not all I am. In the future, I’d like to be able to take pride in my intellectual abilities without them triggering the fear that I’ll need to be good at other things too.

Emotional Development

Last Tuesday, I discussed my care plan with my support coordinator. She needed to update it because the facility is going to apply for a higher care profile for me. Besides, it needed to be made current for my living in the facility rather than at home anyway.

My care plan is divided into several sections, including general health, diagnoses, intellectual, emotional and social functioning. The part about my intellectual functioning unfortunately still lists my IQ as measured 20 years ago. Since it according to the test dropped some 35 points between 1999 and 2017, I’ve wondered whether this is merely due to Flynn effect or something or I’m actually experiencing cognitive decline. Still, my IQ as measured in 2017 was above-average, so it doesn’t really matter for long-term care funding anyway.

In the part about my emotional functioning, I saw for the first time the results of the emotional development impression the consultant from the Center for Consultation and Expertise had written in 2018. This was a bit shocking to be honest. I knew I’m thought of as functioning at an emotional level equivalent of a toddler. It was difficult though reading that in several areas, i’m supposed to function at a level of less than 6 months. This wasn’t surprising though.

For instance, one area in which I function at a level of 0-6 months, is body awareness. The reason the consultant listed was my inability to make contact when overwhelmed. I would add to that my inability to distinguish different bodily sensations, such as hunger and pain. I tend to react to everything that’s physically overwhelming by acting in a self-stimulatory way. The consultant also listed my craving physical stimulation such as rocking as a reason for this.

I also apparently function at 0-6 months with respect to differentiation of emotions. In other words, I don’t do that. The consultant explained that I have a lot of distress and am hardly ever relaxed. While this is true, I’d like to add that I don’t generally distinguish between different strong emotions. Like, at all. Each strong emotion feels equally overwhelming to me, even strong “positive” emotions.

With respect to verbal communication, my level is 3-7 years. Because this scale was developed for people with intellectual disability, the highest level is 7-12 years and I in some ways expected to be qualified as functioning at that level. I do with respect to handling familiar tools, such as my computer. However, the consultant apparently recognized my less-than-great (understatement!) language comprehension.

It was rather interesting to read this assessment, even though of course the concept of mental age used here is a bit off to say the least.

Not Their Baby Anymore

Tomorrow is my 34th birthday. My parents came for a visit today. My mother, for the first time in so many years, didn’t openly reminisce about the time I was a baby. In fact, she seemed rather relaxed.

I was born three months prematurely. My due date would’ve been September 29, 1986 instead of June 27. Most if not all of my multiple disabilities are the direct result of my premature birth. I mean, it’s controversial to say this about autism, as most people in the autistic community claim it’s purely genetic. I have some genetic risk factors too, in that both my father and paternal grandfather are/were of the broader autistic phenotype. We can never be sure though how much my genetics contributed and how much the brain bleed and subsequent hydrocephalus I suffered did. In any case, my blindness and mild cerebral palsy are both due to my premature birth. My blindness is caused by an eye condition called retinopathy of prematurity and my CP is due to the aforementioned brain bleed.

As much as I sometimes seek to discuss my early childhood with my parents, I’m happy neither brought up the topic this year. They were in some rather brutal ways confronted with my current life. After all, due to the COVID-19 measures, I couldn’t be at my husband’s home when they visited. This was one of the first times my parents actually visited me in a care facility. When I was in the psychiatric hospital, either they’d visit me at my student apartment or later at my and my husband’s home. I think there were a few years, probably 2010 and 2011, when I had neither, but they always managed to take me out to some restaurant or something then. They were probably confronted with care facilities a few more times, but not in the past eight or so years.

A fellow resident tried to hug my mother when she came in. She didn’t comment. She did ask at some point whether my fellow clients can talk and I honestly replied that most can’t. When I told her there are clients in other homes I can talk to, she did ask why I didn’t live there then. I just said I didn’t have the right care profile for those homes or there was no available room.

Honestly, I’m totally relieved that my parents didnt’criticize me. I know they don’t agree with my being in a care facility. Still, they probably realized I’m not their little baby anymore.

Written for Fandango’s One-Word Challenge (#FOWC): baby.

Whale Sounds #SoCS

When I started day activities at the first center I went to when being kicked out of the mental hospital in 2017, I experienced snoezelen® for the first time. Snoezelen® is a type of sensory experience at day activities for people with intellectual disability. The idea is that the entire sensory environment can be tailored to suit the client’s needs. In that room, there was a waterbed. I lay on it listening to a CD called something like Whales of the Pacific. The waterbed had speakers inside of it too, so that it vibrated along with the music.

I grew to love love love that CD. When I left for another day center, I tried to get ahold of this CD but found out it was no longer available in stores. My staff at the old center tried to copy it for me, but that didn’t work. At the next center, they didn’t really have relaxing music I liked, so I usually just lay on the waterbed without listening to music. Their waterbed didn’t have speakers in it either anyway.

Now at my current day center, I have come to enjoy relaxing music again. I particularly like a CD called Songbird Symphony. It has music and bird sounds on it. I was able to find the album on Spotify too, so that I can listen to it while lying in my own bed or while relaxing in my recliner too.

As for whale sounds, I discovered an album on Spotify of whale sounds with music by a group called Robbins Island Music Group. They also release other types of relaxing and focus-oriented music, but I like the whale sounds the best.

Interestingly, I still really don’t like whale sounds without music. I love whale sounds, birdsong and the like, but there has to be a musical component to it too.

Looking back, I remember asking my psychologist at the mental hospital whether snoezelen® would be a suitable activity for me. She didn’t think it would be, as she claimed this is only suited to people with intellectual disability. Well, I love lying on the waterbed, Songbird Symphony surrounding me. I don’t care that I’m apparently too intelligent for it.

I’m joining in with #SoCS, for which the prompt today is “animal sounds”.

Weird or Creepy Interests

Today I have a lot on my mind, but not much I can put down into writing. To occupy you readers anyway, and to distract myself a bit, I’m participating in My Inner MishMash’s Question of the Day. The question is whether you have any interests most people consider weird or even creepy or gross.

Creepy or gross, no. I mean, yes, I’m interested in medicine, but not specifically in anatomy or bodily functions. I have some interest in genetic conditions, particularly rare ones, and of course I’m into psychiatry. Lately, I’ve been connecting the two and learning more about psychiatric aspects of genetic syndromes. I was fascinated when I was told one of my fellow clients has Christianson Syndrome, a form of X-linked intellectual disability that is similar in presentation to Angelman Syndrome. I at first felt weird googling the condition, but since the staff specifically told me about this client’s syndrome rather than me having overheard it, I felt okay in the end.

Weird, yes, definitely. I already commented on the original post that I’m into calendars and timekeeping. I still keep and cherish a twenty-year-old newspaper article explaining why the year 4000 shouldn’t be a leap year, among other things.

I also tend to get upset when people make calendar calculation mistakes, particularly when they do it on purpose. My husband likes to talk about 30th February, for example. As a teen, I used to calculate what day a given date fell on. I was particularly fascinated by dates before 1582, so that I could show people that I knew about the Julian/Gregorian calendar transition.

I also, when I still lived in Apeldoorn, loved riding random buses to memorize their route. Apeldoorn’s buses at least all used to go in an eight-shaped route, each time getting back to the station. That way, I’d never get lost even if I rode a bus I’d never been on before. Before I moved to Nijmegen, I had the bus schedule nearly memorized too.

Currently, I don’t have any weird or unusual interests that I’m particularly actively engaged in. However, when it comes to my “normal” interests, they do tend to be abnormally intense and detail-focused.

Do you have any weird interests?

A Letter Explaining My Life Right Now

Today’s topic in 7 Days 7 Posts is to write a letter to someone explaining your life right now. I have been thinking about reconnecting with the head nurse from the psychiatric resocialization unit for a while. She was one of the most supportive people I ever met during my psychiatric hospital stay, but still, she was a bit prejudiced. Here is a letter to her.

Dear K,

How are you? I hope you are well. Do you still work for the psychiatric hospital? When I last spoke to L (my named nurse from the resocialization unit), she informed me that the entire Nijmegen long-term care hospital was closing and moving to Wolfheze. Do you work there now?

When I last wrote to you and L, I explained that I was living with my husband in the tiny village and going to day activities. I didn’t inform you that I was struggling. I eventually got kicked out of my first day center with this agency and transferred to another one.

Still, I struggled with independent living with my husband. My husband is a truck driver now and his shifts are like 12 hours a day. For this reason, we finally applied for long-term care funding at the end of 2018, which after a long battle was granted in June of 2019. As of September, I live in a care facility for people with intellectual disability in Raalte. I know you didn’t want me to go into housing for people with intellectual disabilities. Well, I am happy here.

We involved the Center for Consultation and Expertise again when I was struggling at my first day center. The consultant psychologist assigned to my case assessed my needs. Among other things, she concluded that I function emotionally at a level of around 6-18 months.

I go to day activities at a group for older people with profound intellectual disability, most of whom live with me too. I go for almost daily walks. I love to go to the snoezelen® room too. I also do a weekly cooking activity with the staff intern. It’s sometimes difficult to figure out activities I can do, because the other clients mostly just sit around and I almost need one-on-one support with most activities.

I am still married to my husband. We bought a house in Lobith, but this is mostly for him to live in and for me to go to on week-ends.

I still see the mental health team, but have decided not to pursue any formal therapy program for now. Dialectical behavior therapy, which I used to try, didn’t work out because of my autism and my dissociative symptoms. I don’t feel comfortable going through the assessment for dissociation though.

Anyway, hope you are doing well. I suppose L is around retirement age now, but if she still works at the hospital and you still see her, send her my warm regards.

Astrid

A Mixed Monday

Today is a truly mixed bag! I started out feeling relatively well. The flu seems to finally have left me, although I still sound a bit hoarse. Then in the morning I ate just a little too much sugar-free liquorice. This type of sugar-free liquorice has manitol in it, which works as a laxative. If I eat moderate quantities of liquorice, I’m totally fine, but if I eat too much, I get like the worst diarrhea imaginable. I thought I hadn’t eaten ntoo much, but apparently I had. If my husband reads th is, he’s going to say he warned me.

I was still relatively okay during the morning. Went for a short walk. Then in the afternoon I didn’t feel well. This usually affects my mood before I’m even aware I’m physically unwell. I started to get really frustrated with how quickly my iPhone battery level would go down, which honestly isn’t that quickly at all given it’s an older model. Then I started to get annoyed with my fellow clients’ sounds. My fellow clients are all non-speaking, so it really is no wonder they make sounds. Just because I can’t understand them, doesn’t mean they need to shut up. Finally then I got annoyed with my staff having mindless chatter while I was trying to indicate I wanted help finding something to do. I found a simple shape-sorting task eventually, but it didn’t satisfy me. In this sense, it frustrates me that I need the level of support and low-stress environment geared towards people with severe intellectual disabilities, but at the same time need much more stimulation. My range of understimulation and overstimulation even seem to overlap a lot, so that my window of tolerance is very narrow. I try to tell myself I just need to accept boredom if I want to keep my level of support, for if I am judged to be too much of a handful, the result is likely that I get less support. That being said, telling myself not to be a pain in the neck doesn’t mean I actually am not a pain.

Finally, I started talking to my assigned staff. We agreed to try out soap making again someday soon. It’s something I enjoy and is a relatively quick activity even if I need hands-on assistance, that will nonetheless satisfy me for a while. I will ask my husband to bring my soaping supplies when he next visits me.

When I returned to the care home, I browsed my favorite soaping supplies store. I was talking to my assigned day activities staff about also knowing how to make lip balm. That’s an even easier activity that can be made more complex by using individual oils and butters rather than ready-made lip balm base. While browsing the store website, I came across a starter kit to make your own bath bombs. I’ve been wanting to do that forever, but since the goal up till recently has always been full independence, I thought this wouldn’t be a suitable activity. When I get back in the swing of soaping, I may buy myself the starter kit. It has some supplies I already have, such as colorants and fragrance oils, but you can never have enough of those. We have a bathtub at the care facility, so I’ll actually also put them to use.

In the evening, I was so excited I wanted to tell my home staff about the soaping idea and the bath bomb craziness. Then however the staff were talking among themselves for like an hour. They weren’t talking about clients, but still I beat myself up over wanting to interrupt them. That led to more frustration and overload and I eventually ended up banging my head. I feel incredibly annoyed with myself for being an attention-seeker like this, even though I didn’t act out when I thought the staff were looking. They eventually were though. Now I’m not sure whether this will eventually be used against me to kick me out. The staff said no, I won’t be kicked out, but in the end if I don’t change will they not reason life isn’t better in the facility for me? It is better, generally speaking, but I still struggle a lot.

Nuts! #SoCS

I first heard about the details of the Care and Force Act in the Netherlands a few days ago through a fellow mental health advocate. I’d heard of the bill being passed before, but never quite understood or cared what it entailed. Now I know, from both her opposing side and thesupporting side, namely my own long-term care organization.

As it turns out, the Care and Force Act impacts everyone who receives mental health or developmental disabilities services, whether voluntarily or not. Before this law, only those committed involuntarily to a psychiatric hospital, psychogeriatric nursing home or intellectual disability facility, could be subjected to involuntary care. Now, basically everyone who receives (or, I assume, is supposed to receive) care for a mental illness or developmental disability, can be subjected to involuntary care. Yes, even if you live at home. Support staff are allowed by this law to enter someone’s home without their permission and hold them down there, force medications on them, install cameras for monitoring the client, etc.

This all sounds pretty nuts to me. Of course, that’s what said mental health advocate said too. My care facility says that forced care is not allowed unless… and then they go on to list the law’s reasons involuntary care is allowed. This is a long list, including obvious reasons such as self-harm or aggression, but also “endangerment of the person’s development”. Well, WTF?

I understand the well-meaning intentions behind the law. For example, a client with Prader-Willi Syndrome, which makes them eat and drink without inhibition, can be prevented from accessing sources of food or drink. The long-term care facility said in this case (in a flyer by my care organization) they’d decided to disable the client’s bathroom tap so that they cannot drink like 5 liters of water at night. However, quite possibly, this could be affecting people like me who suffer with compulsive overeating. I am sensible in that I try to ask for help in preventing binges, but I mean, I’ve heard clients being told not to enter the kitchen because they eat lots of cookies and are prediabetic. Well, this is physical health, which I understand on at least some level. But isn’t this whole bill meant to make us all conform to the non-disabled standards of “normalcy” whether we want to or not?

And besides, there are huge budget cuts to mental health and disability services, so will this bill not just be used to facilitate lower levels of actually helpful care?

For example, I could in a worst-case scenario be confined to my bed at night so that I have fewer reasons to bother the night staff when I go to bed later than most other clients. Or I could be banned from using Facebook or the Internet altogether during certain times of the day for reasons such as my needing to socialize more, study, or whatever. Like I said, danger to one’s development is a grounds for forced care.

In theory, the law doesn’t sound too bad, but I can imagine treatment providers such as the ones in the mental hospital, whom I couldn’t trust, can misuse this law for very harmful purposes. Does this mean anyone deemed nuts or dumb, to use some slurs, is at the mercy of the so-called helping profession? It’s crazy!

This post is written for #SoCS, for which the prompt this week is “Nuts”.