#WeekendCoffeeShare (October 11, 2020)

It’s Sunday and I’m in definite need of some coffee. For this reason, I’m joining in with #WeekendCoffeeShare. It’s not time for my evening coffee yet, but maybe I can enjoy a virtual cuppa.

If we were having coffee, I’d share that the weather is gloomy. It’s been raining almost the entire day and it’s cold enough that I could use my winter coat.

If we were having coffee, I would tell you that I’m struggling quite a bit. Yesterday I landed in crisis. I didn’t sleep all night and was still feeling very tense by this morning. A walk didn’t even help, because I felt cold and was very tired and overloaded.

I am also struggling with what to tell my husband. The crisis was quite bad and I really want to be open to my husband. However, I fear he’s going to be angry with me for it, because in other places, this could’ve led to me being kicked out. In fact, I’m still worried that the staff are going to decide to kick me out after all.

It makes me feel sad that I, being of above-average IQ, am expected to make my own decisions regarding this stuff and make sure my family is informed.

I mean, of course it has its pros that I’m intelligent. If I had an intellectual disability, I wouldn’t be able to blog, for instance. I also wouldn’t have my husband. However, this discrepancy between my IQ and my ability to cope emotionally, is weighing me down quite a bit.

If we were having coffee, I would tell you that, as unlikely as it may seem now, the rest of the week was pretty good. I made some soap and experimented with baking soda modeling clay. I removed some of the figures from their molds today, but I think they hadn’t fully hardened, as they were still pretty brittle.

If we were having coffee, I would share that I’ve been loving browsing Amazon’s Kindle collection for books to get. I don’t want to buy them yet, but I did download a few free books.

I also finally got Listify on Apple Books. This is a book of journaling prompts (yes, again!) but most are list-based.

What have you been up to lately?

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.

It’s My Choice

Yay, I got accepted into a living facility. The one in Raalte that I visited about six weeks ago. I will hopefully move before I’d otherwise move to the house my husband and I are buying in October.

It is mostly very exciting. I love the place and am really glad that the physician, psychologist and the team all agreed that I’d be a good fit for the place.

But… There is of course a but. I haven’t told my parents yet. I told them I got long-term care funding, but told them it makes it possible for my husband and me to live together wherever we want, not being restricted by our local authority. It could do that too, but that’s not the plan. And I didn’t tell them I’m moving into a care facility.

They will hopefully say that it’s my choice. That’s the best response I can get. Not that they support me, but that it’s my choice and I’m an adult so I’m allowed to make that choice. After all, they still feel I don’t need 24-hour care. They still feel that I’m just blind and extremely intlligent and using my IQ to manipulate the world into providing me care.

Well, so what? Of course, I don’t want to be manipulating everyone into providing me care. I don’t want to be a little attention-seeker who thinks the world owes her a living. I wish I could snap out of my need for care and live a successful life by non-disabled standards.

At the same time, maybe if I didn’t care that I’d have to be sedated to the point of sleeping all day, I could do with less care than I’ll be getting in the living facility. As someone once asked, how can you literally need 24-hour care, since you’re (hopefully) sleeping during the night? This person was by no means trying to suggest that sedation could lessen my care needs, for clarity’s sake, but it could. And I’m making a choice not to sleep the day away. If you think that’s me being manipulativve, fine by me. That’s your choice.

I am writing this post for today’s Daily Addictions. The prompt is “Choice”.

Five of the Most Significant Events in My Life

And once again, I didn’t post for nearly a week. I am beginning to feel pessimistic that I’ll complete the A to Z Challenge in April. However, I still would very much love to make it happen. I am pretty uninspired though.

To get back into the writing habit, I am choosing to write about a topic I’ve already posted about on my old blogs a couple of times. It is good though for my new readers of this blog to get to know me. I am going to share a list of important events in my life. Because I need to explain a little about each, this post may become a bit long.

1. The day I left the hospital at three months of age. I was born over three months premature and had to spend the first 94 days of my life in hospital. The unit I was on is commonly referred to as neonatal intensivecare unit or NICU for short, though I wasn’t in actual intensive care the whole time. I was on a ventilator for the first six weeks and, after I learned to breathe on my own, was moved to medium care, the general ward and eventually home. In the NICU, I sustained a brain bleed and developed an eye condition called retinopathy of prematurity. These two conditions are the main cause of my disabilities. I was finally discharged from the hospital on September 29, 1986.

2. The day I started special education. I started school, as most children here in the Netherlands did at the time, on my fourth birthday (June 27, 1990). I started in the first year of Kindergarten, which takes two years here. Just before the end of my second year in Kindergarten though, on May 11, 1992, I was moved into special education for the visually impaired.

The reason why I had to transfer remains a mystery. My parents say it was because I had to learn Braille, but I didn’t get to learn that till over a year later and only because a totally blind boy joined my class. The school was generally only equipped to educate those with low vision. Besides, the first special school my parents chose for me, was for those with mobility impairments. I was turned down because cerebral palsy isn’t my primary disability.

My inner five-year-old holds some memories of this situation. In our memory, I was ill with what could’ve been a partly psychosomatic illness just before moving to special ed. I cannot prove this though.

3. The day I started mainstream secondary school. My parents fought for years to get me out of special ed again. If I have to believe them, they fought from the moment I started in special ed to get me out again. They were convinced I’m far too intelligent for special ed, despite the fact that most schools for the blind offer a normal elenentary school curriculum. Anyway, they finally succeeded after taking me to the third ed psych in eighteen months, a psychologist who’d never even seen a blind person in his practice. This was also when I got labeled as gifted with a verbal IQ of 154. These three digits haunt me till this day.

I started mainstream secondary school on August 25, 1999 at my city’s grammar school. Those six years were awful. I scored above-average academically, but struggled socially and emotionally. I dissociated through most of my time there and hardly have any real memory of it.

4. The day I suffered my psychiatric crisis. After graduating high school in 2005, I’d taken two gap years to work on independence. While in my second gap year, I was diagnosed as autistic. Leading up to this was my increasingly falling apart at the independence training home. I got sent out to Nijmegen to live on my own on August 1, 2007 though. I fell apart within three months. By late October, I was wandering everyday, had multiple meltdowns a day and ended up suicidal. I was eventually hospitalized on November 3.

5. The day I got kicked out of the hospital again. I remained in a psychiatric hospital for 9 1/2 years, but eventually got kicked out on May 8, 2017. I believe the real reason is the government budget cuts to mental health, but my treatment team at the time blamed me. I have been living semi-independently ever since. As regular readers know though, I’m in the process of hopefully getting into long-term care again.

PoCoLo

The Friday Four

I am struggling a lot. I got some really bad news, but I cannot share it publicly at this point. This has caused me a lot of stress, but it did get me to revive my offline journal, which I keep in an app called Dyrii on my iPhone. I have the app on my Mac too, but haven’t yet fully figured it out on there.

That being said, my not being able to share what’s on my mind publicly, did keep me from writing on this blog at all. To get myself back into the writing habit, I am participating in A Guy Called Bloke’s Friday Four. I get the impression that this is the last installment in the series for now, so I’m rather late to the party. I like the questions though.

1] If you are in a bad mood, do you prefer to be left alone or have someone to cheer you up?
I prefer to be with someone to talk to and for them to cheer me up, but I often act like I prefer to be left alone. I tend to withdraw when depressed.

2] What’s the one thing that people always misunderstand about you?
The (lack of) significance of my being of above-average verbal intelligence. I got a bad reminder of this last week (the stressor I cannot share about here). For those who don’t know, I have an above-average verbal IQ, but struggle in almost every other area of cognitive, social and emotional development, adaptive behavior, etc.

3] What do you think about when you’re by yourself?
Usually the current stressor du jour, which often involves the future.

4] What are three things you value most about a person?
Kindness, compassion, respect.

Bonus Series 1 Question
If heaven is real and you died tomorrow, would you get in?
Yes, because I believe there’s no special requirement to get into Heaven (like accepting some kind of savior) and I’m not an altogether evil person.

Long-Term Care Assessment

I’ve been wanting to write much more lately, but somehow, I can’t get myself to actually sit down and write. I remember originally posting twice a day almost everyday when I started this blog, and now I’m barely writing twice a week.

I still need to update you all on the meeting with the long-term care funding person. She wasn’t the physician but the one actually making the decision on funding. The physician may still need to contact my psychiatrist in order to advise this person on funding.

She asked a lot about my level of independence in various situations. Like, she asked whether I can cook or clean the house. I was expecting her to ask about much more basic self-care skills like showering. She did ask about those too. I don’t know whether it’s a good thing or bad that she didn’t go into that much detail about my basic self-care. I mean, those are things I at least try to do myself, even though I fail miserably at them. I thought it should be obvious that I can’t cook or clean the house.

The funding person asked multiple times whether I’d had independence training. I couldn’t go into too much detail about that, but I did make it clear that I got tons of it. I also think I explained that the skills didn’t generalize to a new situation, such as living independently.

The funding person said she may want me to get some type of test for emotional development. There is a questionnaire called SEO-R that I think support staff or others involved with the client fill out to determine at what level a client is emotionally. I googled the descriptions of the different developmental stages. In some respects, I would really be like a 6-month-old, while in others, I’m closer to 7 years. I didn’t recognize myself in the most advanced stage, which corresponds to children age 7 to 12. There is probably a stage for adolescents too, but this scale was originally intended for people with mild intellectual disability, who by definition don’t reach this stage. I know the whole concept of mental or emotional age is ableist, but as long as it’s not used to actually infantilize clients, I think there is some use to it.

The intent of this scale being administered in my case is to maybe qualify me for an intellectual disability care profile. The funding person wasn’t impressed with my IQ anyway. I mean, it was measured as being 154 some twenty years ago, but was measured as at least 35 points lower in 2017 and with a ton of discrepancies. Like, I scored high on calculus, but slightly below average on comprehension. Besides, I didn’t say this, but only the verbal part of the IQ test could be administered because of my blindness. I liked it that this person didn’t see me as some sort of genius.

At the end, my support coordinator tried to explain what we’re going to do with the funding if we get it. She explained about the living facility we visited last week. I got a little unquiet at this point, so the funding person offered to talk to my support coordinator on the phone later. She never did. I don’t know whether that’s a bad thing or not.

I’ve been really stressed out these past few days. I dream almost every night about possible outcomes of this assessment. Like, will I get funding based on blindness or intellectual disability? Or will the funding people decide mental illness is my primary disability and deny me funding because I need treatment for that first? And if I get funding, will I get into the place I visited last week? I hope I will, but I’m not getting my hopes up too high yet.

Now my support coordinator is on vacation and won’t be back till the 27th. I think the funding decision has to be made by then. My support coordinator asked me to text her when I heard about the decision, so that she can bring cake if I get approved. Again, not getting my hopes up.

My Greatest Dream in Life #Write31Days

Welcome to day five in #Write31Days. So far this month, I’ve used a bunch of prompts from various sources already, each with a different perspective on personal growth. Today, I picked a prompt from one of my older collections of journaling prompts, a book of 100 self-help journal prompts by Francie Brunswick that I have in my Adobe Digital Editions. Adobe Digital Editions is no longer accessible with my outdated version of the JAWS screen reader, but I managed to get it working a little with NVDA, an open-source screen reader.

The prompt is to journal about your greatest dream or the ultimate goal you have in life right now. I do have goals, but if I have to be really honest, my biggest dream is to feel mentally stable and safe.

I have suffered with depression on more than off ever since middle childhood. My parents tell me that, before then, I was a cheerful, laid-back child. I still had social and emotional deficits, but they were manageable. According to my parents, my psychiatric struggles didn’t start until I was around seven. They blame it on my becoming aware of my blindness.

I am in contact with an autism-specialized consultant for getting me proper care. She says that many children with normal or above-average IQ and autism get stuck in school at some point. Usually the first point of actual breakdown is the beginning of secondary school. I remember this point really well. One day, in my first year of secondary school, only one month in, I wrote in my journal that I’d rather earn a high level high school diploma in six years than have to settle for a lower level with more special education support. In the years that followed, I kept hearing this inner voice: “YOu don’t want to go back to special ed, do you?”

The next point of breakdown usually happens in college. I finished one year of college only with a lot of support. Then I broke down at university. I never fully recovered.

Over the next eleven years, I resided in general mental health facilities until being kicked out for allegedly being dependent. People had control over my life all this while and I never felt safe. Now I’m away from the controlling professionals and my parents, living with my husband, but I still feel extremely unsafe.

I was originally going to write down my goal more specifically. I was going to write that my biggest dream right now is to get into long-term care. That sounds extremely off though. I’m still not free from the interalized stigma surrounding long-term care. Still, I think I should be too “high-functioning” for it. I’m scared that, if we apply for long-term care funding, the decision-maker will read this blog and say that someone who can write a blog, should not need 24-hour care. That’s a terrible misconception that could cost people their lives. And yes, that includes me.

Seven Things I Wish My Unsupportive Parents Understood About Me

I just read BPD Bella’s post about ten things she wishes non-borderlines knew about her. I have only some BPD traits and couldn’t relate to everything she describes. However, this post inspired me to do my own list. I’m dedicating this list to my parents by sharing some things I wish they understood about me. For those who don’t know, my parents are particularly unsupportive of my disability experience.

1. I am not “just blind”. I know that many blind people like to minimize the impact of their disability, to prove that they’re competent adults, blindness and all. My mother at one point told me about one of my sister’s college friends, who is blind. She then remarked she wished every blind person had the same abilities. That’s not how it works. But guess what? Sighted people vary in their abilities and difficulties too.

2. My needs are valid. I wasn’t being “manipulative” when I threatened suicide in 2007 while living on my own. I was desperate. If I had really been able to cope, I would have. Similarly, I’m not being “manipulative” by trying to get into supported housing now. No, I’m not in a suicidal crisis on a daily basis anymore, like I was in 2007. However, I want to prevent it from getting that far.

3. If you want me to have a skill, teach me. This is too late, since my parents should’ve gotten this message when I was young. They expected me to be able to live fully independently right out of high school in 2005, though I didn’t have most daily living skills. I appreciate how hard it was for them to teach me growing up, but that’s no excuse to drop the ball.

4. A family is not a business. One of the reasons my parents didn’t teach me independence, was that it got in the way of them running their family efficiently. That’s not an excuse.

5. Not everything is my IQ. My parents are convinced that I am such a genius intellectually that I should be able to use it to overcome all of my difficulties (except maybe my social ineptness). Also, this genius IQ enables me to manipulate the world into believing what I want them to believe, which is apparently that I’m weak and dependent and need lots of care. (I am not trying to say needing lots of care makes a person weak and dependent.) No. I would’ve graduated university and gotten a job if I could.

6. Depression is real. Some professionals believe that my childhood irritability stems from depression. I’m not sure that’s entirely true, but it’s possible. I definitely suffer from depression on and off in adulthood. My parents instead say it’s an attemtp on my part to make other people feel miserable, presumably because I refuse to accept the fact that I’m blind. Well, going blind can be traumatic and is not something you “just need to accept”.
Besides, depression is an illness, not a weakness or choice. When depressed, I do make other people feel miserable, but it’s not because I want to.

7. I am an adult, I make my own life choices. In 2006, my parents threatened to abandon me over my wanting to delay university one year. In 2008, they showed up at my hospital ward to take me home with them, because they didn’t agree with the social worker’s plan for my follow-up care. I’m pretty sure that, if I go into supported housing, they’ll try to guilt trip me into not doing it. I couldn’t handle that in 2006. I could in 2008. I am pretty sure that, should they decide to abandon me for good this time, I’ll be able to handle it.

I see this list sounds rather accusatory towards my parents. It is. I don’t even intend for my parents to read it. I know that I’m past setting things straight with them. They won’t change. Besides, my childhood and early adulthood won’t change. I can change to an extent, but I doubt this will lead me closer to my parents. I don’t care.