If I Could Have Any Pet

Today’s topic for Fandango’s Dog Days of August (#FDDA) is “pet”. One of the suggested topics is to talk about which animal you’d have if you could have any pet. I am going to use this topic as a starter for today’s blog entry.

As regular readers of my blog might know, my husband and I have a cat. We first got a cat, Harry, when we were first planning on living together in 2013. We’ve had Harry since kittenhood. However, he was pretty hyperactive, so we got Barry, thinking the two might make great playmates. Well, they didn’t, so we ultimately rehomed Harry. Now we still have Barry.

I always grew up with cats. The thing with them though is, they invariably seem to sense my inadequacy. Whether this is due to my blindness, I don’t know.

Regardless, cats aren’t quite as confortable with me as I’d like them to be. I still hope I will someday have a cat that will have a true liking for me, but that’s not in cats’ nature, I’m afraid. They’re more introverted than some other animals. Or maybe that’s just been the cats I’ve had so far.

All that to say that, if I could have any pet I wanted, I would like a dog. However, I’d for sure like it to be a psychiatric service dog as well as a trained guide dog. That seems a bit much, maybe, but I know some blind people whose guide dogs also help them with their mental health issues.

I may also want to have a pet rabbit or guinea pig. Rabbits generally need a lot of space, though my sister-in-law keeps three (if I’m correct) in her house. She does have a garden, so I hope they’re able to roam about there at times too.

In general though, I don’t think I’m that much of a pet person. I fed Barry dutifully when I still lived with my husband, and though I did take delight in it, I wouldn’t say he’s like my child or something. I’d love to develop more of a connection to Barry and to whichever future pets I might have. I do care deeply about them, but I just don’t feel the natural attunement to my pets that others do. I can’t say it’s an autistic thing, as a common autism stereotype (thanks, Temple Grandin) is that we have a strong connection to animals. I guess I for one don’t.

#IWSG: The Form Will Find Me?

IWSG

It’s the first Wednesday of the month and regular readers know what this means: it’s time for the Insecure Writer’s Support Group (#IWSG) posting day.

Well, let me say I’m pretty insecure indeed. I did pretty well on the blogging front this past month, but I always dream bigger than I actually live. I mean, I remember saying about four years ago that, within the next five years, I’d like to write my memoir and yet there’s not a single word down on the page. That plus I haven’t a clue where to start. Stories or pieces of non-fiction would flow so easily when I was younger. I have one work in progress that could’ve turned into a young adult novel if I’d just had the willpower to finish it. Not saying it’d be published – it certainly wouldn’t, as it’s rather unoriginal -, but well.

I keep remembering that Stephen King quote in DIY MFA about how you need to write 2000 words a day. I know, the author said this isn’t true, but I do need to write.

Thankfully, I do write. I got a premium subscription to Day One, a journaling app for iOS. Though I haven’t written in my journals everyday, I do find that the words come more easily already after a week of having it. As a result, I did write on my blog everyday for the past week. I really could use some guidance on how to transform my blogging practice into something more powerful.

Now on to the optional prompt question. It’s a quote that says that, although you may write in a certain genre, you don’t have to have that predetermined. Rather, the form or genre will find you once you write. I indeed must say I agree with this to some extent. Though I often set out to write in a specific form, my words don’t usually come out in that form eventually. Even if I do choose a genre in advance, my words often flow more easily when I let them rather than plan what I’m writing in advance.

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.

A Year Ago

One of Mama Kat’s writing prompts for this week is to look back at a year ago. Where were you then? What has changed and what hasn’t? Let me share.

A year ago yesterday, I had my intake interview and tour of the care facility in Raalte. We visited the sensory day activities group and snoezelen® room, as well as the home selected for me. At the home at the time was a respite placement for a man I knew from the day center I went to at the time. He greeted me excitedly: “Astrid!” He then went on to babble “respite fun”, “Mommy and Daddy vacation”, etc. I was shown around two rooms, one this man’s room at the time and one another client’s room. I think that client got moved to another room when I came and I now have his room.

Even though I had been invited on a tour of the facility, I didn’t know for at least another month that I had actually been accepted. The reason was that the staff all had to agree they could provide me adequate support and care, given that my needs are in some ways very different from the other clients’. They, after all, all have severe to profound intellectual disability.

Now, a year on, I’m settled nicely into the care facility. I didn’t get to attend day activities at the group they’d shown me. Now though, and for at least another two months, we get day activities at the home.

I think also around a year ago today, my husband had first seen the house in Lobith we ended up buying. I ended up moving to the care facility in the same week we got the keys to our new house. As such, a year ago today, I still lived in the tiny village rental house with my husband.

As I look back, I keep praising God that this whole COVID-19 thing didn’t happen last year. Even though the day center I attended at the time is slowly opening its doors again, community support is still mostly phone-based. I am forever grateful I got my long-term care funding approved last year.

In other news, the weather is drastically different now from last year. Last year, all weather records were broken with temperatures rising to 40°C. Now we’re lucky to reach 20°C and have a few hours of no rain each day.

How is your life different now from last year?

Mama’s Losin’ It

Adult Separation Anxiety

One of the consultant’s comments in my emotional development assessment was that I have a lot of separation anxiety. The rest of my care plan is also full of how I’m afraid to be alone. A little over three years ago, my psychologist at the psych hospital said basically the same by diagnosing me with dependent personality disorder (DPD). Then, I vehemently disagreed. It wasn’t just out of anxiety that I needed lots of care, after all.

Another reason I was in denial of my separation anxiety/DPD, is the judgmental way in which my psychologist approached the matter. She felt I just needed a good kick in the behind and for this reason discharged me from the mental hospital almost with no after care.

Of course, that’s not the way to treat dependent personality disorder. Besides, one of the main features of DPD is not physical dependence, but unquestioning compliance, which I certainly don’t display. I don’t lack assertiveness at all.

I want to clarify here that, at least in my case, I’m not unwilling to be alone. I’m alone right now as I type this blog post. When I’m mentally well, I can be quite happy being alone, as long as I know there’s someone available if I need them.

It’s all too easy to judge people with adult separation anxiety disorder or DPD. Usually though, it’s much more helpful to approach them from an emotional development angle than from a character flaw angle. I again at least don’t want to ask for attention all the time. The things that I get help with from my staff, even though I can sometimes do them myself, I don’t ask for help with because I’m just lazy. In fact, it’s often easier to do some self-care tasks quickly by myself than to ask for help, but then the tasks don’t get done thoroughly.

I have for the majority of my life figured out how to care for myself alone. That’s because, despite all the independence training I got, no-one started with the very basics. Besides, like I said yesterday, I don’t usually distinguish between feelings of hunger, pain, etc. Isn’t it a bit odd then that you’d expect me to remember to do the day’s self-care tasks (which are many!) and actually do them all by myself?

I am so glad my current care facility isn’t as judgemental as my former psychologist was. My current staff don’t assume unwillingness, like she did. We may not find out soon yet what will turn out to have been the best approach. It will also probably depend on what measure of success you use for the outcome: independence, mental wellbeing, cost-effectiveness, etc.

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.

#IWSG: Mid-Year Reflections

IWSG

Wow, can you believe the first half of 2020 is already over with? They were quite eventful six months for most of us, I guess. Anyway, it’s the first Wednesday of the month and that means it’s time for the Insecure Writer’s Support Group (#IWSG) gathering.

This past month wasn’t too eventful in the writing department. I was at times really motivated, but most of the time, I was a bit uninspired.

To get some of my writing mojo back, I started working in the book DIY MFA, though its author claims writer’s block does not exist. The only reason we don’t write, according to her, is that we don’t want it badly enough.

I started writing a short piece of fiction right that same evening. It was based on a writing prompt I found in a collection for July on another blog. It’s still a bit random and not worthy of publication even on this blog. I might try to edit it someday or I might not.

I’ve also been journaling and writing stream-of-consciousness more lately. I like that and it helps me keep my writing muscles active. I don’t have a word goal. One thing I learned from DIY MFA is that there is no rule of thumb or best practice on how to become a writer. I mean, Stephen King claimed you need to write 2000 words a day and read at least 80 books a year. I don’t write as much and I certainly don’t read as much. Now I don’t intend on becoming a novelist. My one published piece of writing was written in the same way I write a blog post, kind of randomly.

Still, I hope to someday publish more. As such, I hope that the publishing world will become more diverse than it is now in the future. I mean, I’ve looked at mainstream places to submit my work and I always think my story is a bit out of the ordinary for them. I can’t be sure, of course, until I submit my work and see how it does.

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.

Decisions

This week, V.J.’s weekly challenge is all about decisions. V.J. is facing a decision regarding an opportunity to buy a house.

My husband and I faced a similar decision last summer. I had been approved for long-term care funding on June 4. This would mean higher costs for my care, as the copay for long-term care is several hundreds of euros a month, while the copay for community care is at most €19. This made our search for a house to buy more urgent. After all, mortgages are usually cheaper than is rent on a similarly-priced house. We had inquired about buying the house we were renting at the time, but the housing corporation had refused.

My husband did most of the visits to possible houses by himself, including the one to the house we ended up buying. This house was about the only house within our budget that wasn’t falling apart or being rented out for an undefined time. The latter of which is illegal, but that didn’t help us.

So my husband ended up choosing our house in Lobith. I was hardly involved with the paperwork, except where I had to be because we’re married. I was pretty sure I wasn’t going to live in this house for long anyway.

Similarly, my husband left all decision-making regarding the care facility I was going into up to me. Of course, this is in a way different, in that I’m a legal owner of our house and he’s not legally anything regarding the care facility.

I ended up moving to the care facility in Raalte just two days before we were to sign the contract on our house.

It’s indeed somewhat interesting that my husband and I leave each other so much room for decision-making regarding our own lives. Other married couples probably do much more shared decision-making. I don’t know whether it’s a good thing or not the way we do it. People have encouraged me to get more involved with the financial and legal aspects of the house. I’ve also been told my husband could (should?) be more involved with my care. But as long as we’re both competent adults, it works okay.

I’ve been thinking of making my mother-in-law my official decision-maker should that ever change in my case. I know my nearest relative would be my husband, but I want in any case to prevent my parents or sister from becoming my guardians. After all, I’m not too sure they truly would have my best interest in mind, though obviously they’d think they do.

Listening to My Inner Voice(s)

The day two prompt in The Goddess Journaling Workbook is about listening to your inner voice. This is incredibly hard. Not just because I have multiple inner voices, but because a lot of them carry shame.

Today I found out Onno van der Hart, one of the world-s top experts on dissociation, had his psychotherapy license revoked indefinitely for violating a patient’s boundaries. He was the main proponent of the structural dissociation theory. This theory is controversial in its own right, as it dehumanizes alters. For example, therapists are supposed to only talk to the host or apparently normal part, who is then supposed to relay messages from the other alters or emotional parts. One of the main problems with this is shame. The host often feels uncomfortable sharing the other alters’ thoughts because they are painful.

So, as an act of radical rebellion, I am going to now let each alter who’s willing to speak on this issue share their thoughts.

I knew this. DID is bullshit. It’s not real, at least in my case. I’m so happy I am not diagnosed, as this Onno van der Hart, a so-called expert, took twenty years therapying with a client only to make her dependent and then dump her like a pile of poo.

I’m scared. I wish I still had the diagnosis so I could get trauma therapy. I want my therapist to comfort me. I don’t want to integrate, but I do want to process stuff. I’m not sure. I’m scared that no-one will believe me now that the Netherlands’ top expert on DID lost his license.

I don’t want no fucking therapy. I don’t want to be forced to be anything I’m not. I just want to be me and be myself and be accepted.

Fuck. I’m manipulative. The whole trauma thing is made up.

Well, I realize I’m not really even capable of letting each of us share their honest thoughts. I still find that I was going to redact out the four-letter words. I feel tons of shame surrounding this whole controversy and the DID thing as well.

As a side note, Onno van der Hart wasn’t sued for his theory of structural dissociation. I think it will continue to guide psychotherapists and the multidisciplinary guideline for treating DID. Van der Hart lost his license for boundary-violation, including unloading his own personal problems onto the patient, sending her unsolicited, emotionally laden E-mails, etc. My husband said he was just trying to cash on her and if no-one saw it, something’s wrong with psychotherapists in general. I’m not sure how I feel about that.