Reflecting on My Life: 2003

Last night, I couldn’t sleep. I was looking for some link-up parties to join in and came across the Life This Week linky. In this week’s edition, host Denyse shares her memories of the year 2003. As this is my first time participating in the linky, I should really start my story from the beginning on, but for some reason, I can’t.

I may have shared this before, but in secondary school, I always had this superstition that life ran in circles. There’d be a year of struggle and crisis, a year of renewed hope and finally a year of disillusionment, after which I’d spiral back to struggle and crisis. The year 2003 was a year of disillusionment.

In 2003, I was sixteen. I turned seventeen at the end of June. I was in the tenth grade for the first half of the year and in the eleventh for the last half.

In the summer of 2002, I had barely moved up a year. My grades weren’t that good and I only moved up because I worked very hard the last few weeks of the year. I had been struggling with feeling like an outcast due to my blindness the entire 2001/2002 school year. That was to change by late 2002, or so I believed. My high school tutor promised me he’d help me feel better.

What he did was come up with a social skills assessment for blind students and have the teachers fill it out. That was no good for my self-esteem, as I showed considerable weaknesses. No-one knew at the time that I was also autistic, even though I suspected it.

The year 2003 was the year I started to learn about myself from a possibly autistic point of view. Even though I had started suspecting I was on the spectrum in mid-2002, I didn’t feel comfortable joining online support groups for it till 2003.

This was also the year I expanded my horizons where it came to using the Internet in general. I had gotten an Internet connection in May of 2002. By April of 2003, I started keeping an online diary on DiaryLand, which several years later morphed into my first WordPress blog.

In the summer of 2003, I attended the International Computer Camp for blind students in Switzerland. I had attended it the year before, when it was held in England, too. This year, I felt a bit disappointed in the end, because it didn’t provide me with the cathartic experience I’d felt the year before.

In 2003, I also explored fictional storytelling as a way of expressing myself. I was experiencing some significant selective mutism at the time, which I could circumvent by pretending I wasn’t talking about myself. This is how my “mirror image”, Kirsten, came to be. She is one of my main alters to this day.

Finally, this was the year I was first starting to explore future planning. Here in the Netherlands, students with disabilities attending mainstream education didn’t get any type of special transition planning at the time. I was expected to just get by and go to university straight out of high school in 2005. In 2003, I started to doubt this would be a success, but I didn’t voice my doubts yet. As it is, I didn’t actually make it clear that I wasn’t going to university right out of high school until April of 2005.

Where were you on the path of life in 2003?

Top Ten Books Younger Me Would Have Loved

I’m a day late joining in with Top Ten Tuesday (#TTT), for which the theme this week is books your younger self would have loved. I wasn’t much of a reader as a child. I loved being read to, but hated reading myself, especially in Braille. I was fourteen when I first discovered reading for pleasure through Caja Cazemier’s books.

I didn’t know enough English to read any of these books at the appropriate age. Actually, I didn’t know enough English to actually understand most books much until I was at least fifteen. Even then, only classics were available in accessible formats here in the Netherlands. For this list, I’m pretending that either younger me knew enough English or the books were available in Dutch. Most of these books weren’t published when I was young anyway.

1. Peter’s Asparagus by Angela Nicole Krause. This is a chapter book about a young boy with Asperger’s (autism). I read it in early 2014 and loved it. Of course, younger me didn’t know I am autistic and Asperger’s wasn’t even added to the DSM as a diagnosis till 1994, when I was eight. Still, well, my inner children find it incredibly validating.

2. A Boy Called Bat by Elana K. Arnold. This is a book for slightly older children on the same topic. I read it in like 2018 and really feel it would’ve been a delightful read for younger me, even though it isn’t as relatable as the above one.

3. Deaf Child Crossing by Marlee Matlin. I didn’t finish this one, but I think my younger self would have loved to read it.

4. Lila and Hadley by Kody Keplinger. Okay, I see a theme emerge here. This one wasn’t published till a few weeks back and I haven’t read it. I want to, but it’s nowhere to be found in Dutch eBook stores. This one would definitely have encouraged younger me.

5. Amina’s Voice by Hena Khan. As a child and tween, I loved learning about different cultures. There was a whole series of children’s books about different countries and cultures out there back then, but as far as I know, the authors weren’t from those cultures. Khan is Pakistani-American and I loved her book. See my review.

6. Pictures of Me by Marilee Haynes. I read this one over New Year’s and loved it. It’d for sure be a comforting read to fifth-grader me.

7. Wonder by R.J. Palacio. I am 75% done with this one and think it’d for sure have given younger me some perspective.

8. Unspeakable by Abbie Rushton. Okay, I’m branching out into young adult books now. I really loved this one when I read it some five years ago and teen me would have loved it too.

9. Scars Like Wings by Erin Stewart. This would definitely have comforted teen me that she’s not alone in having problems. See my review.

10. Diagnosis Asparagus by Catherine O’Halloran. Okay, there are no doubt a ton of other books in the fiction category that younger me would have loved, but I just had to include this one. This one provides a teen’s perspective on being diagnosed with Asperger’s.

As a bonus, I’m going to mention Freaks, Geeks and Asperger Syndrome by Luke Jackson. That one was published around 2003, when I was self-diagnosed with Asperger’s. I would have loved it if my parents had allowed me to read it then.

What books would you wish your younger self had had access to?

After Diagnosis: Dropping a Mask or Seeking Excuses?

I didn’t end up writing anything for the second and third prompt in the 10-day writing challenge. I also skipped the Insecure Writer’s Support Group day yesterday. It wasn’t really that I felt unmotivated or uninspired, but I was busy doing other things.

For example, I read a post on Facebook by a Mom of a neurodivergent child asking the autistic community whether it was possible that the child could be faking autism. That had me thinking. The short answer is that it’s highly unlikely. It is much more likely that, upon learning you are or may be autistic, you drop the mask.

I was self-identified as autistic for some years before I was formally diagnosed. However, my parents and high school tutor shamed me out of seeking an official diagnosis, claiming I was a hypochondriac for believing I’m autistic. Never mind that hypochondriasis is as much a mental condition as is autism.

At the time of my official diagnosis, I was resisting it a bit. I was in college with a psychology major and I didn’t want a diagnosis to stand in the way of my completing the program. Never mind that I was already failing and a diagnosis in fact helped me get some accommodations.

Then after I was diagnosed with autism, I started dropping the mask. Some people, including my parents and staff at the time, thought I was using my diagnosis as an excuse. Well, I wasn’t. I was experiencing what eventually turned out to be extreme burnout.

To get back to the topic of “faking” autism, I won’t deny that a small percentage of people may want to fake a disability to get services or financial help they don’t need. Others might be encouraged by family or friends to “just” go on disability. At least, I know some people who say they experience this. However, with how strict the social security and care systems are here, it is highly unlikely that someone would be granted benefits or care based on just a diagnosis. After all, a diagnosis is just a label.

Besides, said child had already been diagnosed with a neurodivergent condition. More labels doesn’t necessarily mean more care. It can mean more self-knowledge. It did in my case at least.

For example, I’ve over the years been given at least ten different diagnoses. Some may be correct while others most likely aren’t. Exploring these conditions did give me more understanding of myself. Especially with autism, there is a very positive community surrounding it. That definitely helps me finally find my tribe.

Today’s prompt in the 10-day writing challenge was “After”. The idea of the challenge is to write for five minutes. This post took me much longer, but that’s okay too.

Today I Feel…

Today I feel pretty awful. Several of my day activities staff were off sick, so I got assigned a relatively new staff. This was hard enough. To make matters worse, I was pretty badly overloaded all day. I did try to relax in the sensory room, but really couldn’t find my calm.

In the evening, I started a Dutch blog again. It’s been the umpteenth time that I started one and I’m not feeling too optimistic about how long I’ll be able to keep it up. Then again, I did finally find a way to link to it from this blog, so that I don’t have to keep switching primary sites each time I comment on a Dutch blogger for them to see it. Of course other bloggers seeing your content shouldn’t be the point of blogging. At least, it wasn’t my point when I first started blogging. I didn’t care about my stats. But that was over thirteen years ago. Now, of course I do care.

I saw a post by a Dutch disability blogger. That blogger in fact inspired me to start a Dutch blog again. She was discussing the notion of “mild” forms of impairments. I generally hate that notion, even though I still often fall into the trap of judging people, including myself, by it.

For example, I am diagnosed with level 1 autism spectrum disorder and probably level 1 cerebral palsy too. Only my blindness can be seen as “severe”. Even so, it’s of course the combined effect of these disabilities that causes me to need the support I need. Thankfully, the long-term care fudning agency got that in my case eventually. It doesn’t get it in some other cases.

Like, a friend of mine shared a newspaper article a few weeks ago about an elderly man who was profoundly hearing impaired, nearly blind and hardly able to walk but still too “mild” for nursing home funding. This man ended up taking his own life. I was incredibly saddened by this and at the same time, it made me feel guilty. I’m trying to turn this guilt into gratitude though.

This post was partly inspired by the first prompt in a 10-day writing challenge I participate in. The prompt was “Today”.

Quote of the Day (February 19, 2020): Everyone Sees What You Appear to Be

“Everyone sees what you appear to be, few experience what you really are.” – Niccolò Machiavelli, The Prince

When first starting this blog, I intended to do a daily quote of the day post. I never did. In fact, my “Quotes” category has only four posts. I do like quotes though, so when I figured I had nothing else to share, I decided to do a quote post again.

Today I checked out a sort of guided self-discovery journal called Happy to Meet Me. This quote was printed above the first prompt. The prompt was about common misconceptions about you. It asks you what you wish people would automatically see about you.

This is harder than I thought. After all, the prompt isn’t what you wish people didn’t immediately know about you. I mean, that would be easy. I wish people would see beyond my blindness. But then what would they see?

I think most people would see me as still somehow disabled if they didn’t see I’m blind. Like my sister said when I was a teen, I don’t appear like someone my age judging from even my way of walking. Of course, I have mild cerebral palsy, but the average Joe won’t have a clue. They’ll most likely think I’m intellectually disabled. Until I start to talk. Then most people will be baffled and start to assume my every way of being different is due to blindness again. After all, most people here are still pretty clueless about autism.

I don’t really know what I wish people would automatically know about me. I mean, back when I was still more serious about blogging, I knew that people had their blog name printed on T-shirts and I even for a fleeting moment considered getting one myself. I’m glad I never did, as honestly in the age of smartphones I don’t think I’d want people in the streets to be able to Google me without ever having met me. I mean, my blog is way too personal for that.

I can think of things I wish professionals would automatically know about me. I wish they understood the disconnect between my intellectual and emotional functioning. I can also think of things I wish friends would automatically know. I wish they’d know about my interests. But what would I want other people in general to know? I guess I’d start with the very basic: I am a human being just like you.

What do you wish people would automatically see about you?

Three Wishes

I’m trying to participate in 7 Days 7 Posts organized by Jessica from Daysixtyfive. That is, I won’t promise I’ll complete the challenge, as I’m having a nasty cold. Yes, again. I hope I don’t end up with a fever this time. That being said, if it doesn’t get worse than it is now, I’ll probably be able to do fine.

Today’s topic is about wishes. You have just been granted three wishes. What are they?

I initially thought that we’re supposed to have big, world-changing wishes like peace everywhere. Then I saw Jessica’s post and her first two wishes are just for herself and her family. Maybe we all are self-centered like this, so I don’t need to feel shameful about wishing stuff for just myself. Here goes.

1. Physical and mental wellbeing. I purposefully wish for wellbeing, not health, as the genie might interpret health to mean I want to get cured of my disabilities. I don’t. I want to remain blind and autistic and having mild cerebral palsy. I even don’t want to be cured of my dissociative disorder, in that I want to remain multiple. What I do want is to be is stable mentally, less anxious. I also want my chronic physical ailments to go away. And while we’re here, I wish this nasty cold away and not to return.

2. To be close to my husband. I would wish for a suited care facility in my husband’s area, so that I could visit him more often. A suited care facility would be much like the one I’m in now, with a day center on grounds, lots of sensory equipment, the staffing level for me to be able to enjoy regular leisure activities, etc.

3. Unlimited ParaTransit access. This was the first that came to mind after a care facility close by my husband. Bigger things like wellbeing hadn’t even come to mind yet. I could wish for an endless stream of money, so that I can hire my own taxi drivers, but I don’t think I’d feel any better then. However, the ability to travel wherever I want without having to worry about public transportation, is very high on my list of desires. Interestingly, for the cost it took to make all trains and buses wheelchair-accessible, the government could have made this a reality for all majorly disabled people.

What would you wish for if you were granted three wishes?

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”.

Why I Am in Long-Term Care

The day 1 prompt for this year’s 31-day writing challenge is “Why”. I immediately thought of the question that keeps popping up in my mind whenever I meet someone new at the care facility: Why am I in long-term care? Today, for example, I met a student doctor who was touring our home. I informed her midway through our conversation that I don’t have an intellectual disability, to which she replied that she could tell. Well, duh! Even when I’m overloaded, like I was at the time, and experiencing pretty bad language problems, I still sound like someone with at least an average IQ.

So why am I in long-term care? To a casual stranger, I could just point to my lack of sight and they’d be satisfied. Not a doctor or even a medical student, I guess. The medical advisor for the funding agency understandably concluded that blindness alone doesn’t warrant 24-hour care. Neither does mild cerebral palsy. And, as regular readers of this blog know, autism, being seen as a psychiatric condition, doesn’t count.

They finally found a way around this situation by saying that my disabilities are intertwined. They are, of course. In multiple disabilities, the whole is more than the sum of its parts. For this reason, the short answer to why I’m in long-term care is because I’m blind and autistic and have mild CP, not because I have any of these alone.

This is the legal answer. The way the funding agency found around the stupidly close-minded look at disabilities the law requires medical advisors to have. The long answer is, of course, that my individual care needs mean I need 24-hour proximity of care.

I have significant executive functioning issues. These cannot be objectified by tests because I’m blind and the tests of executive functioning that are available, are all visual. For this reason, the medical advisor wrongly concluded that I don’t have cognitive impairments. I don’t have an intellectual disability, but that’s not the same.

These executive functioning difficulties make it hard for me to take care of myself. I can do basic self-care activities with reminders and prompting, but then still I often mess up.

People, including my support staff, have used my blindness as an excuse for my difficulty with basic self-care. Of course I can’t see when my clothes are dirty, but if I were just blind, I would be able to prevent the most common causes of my clothes getting dirty. Like, I would be able to prevent myself from drooling over them, or I would be able to find other ways around it.

People also use my blindness as an excuse for my needing proximity of care. If I were just blind though, I would still struggle to know when staff had left the room, but I wouldn’t feel overwhelmed by it.

But I’m not just blind. Had I been just blind, I wouldn’t have needed to apply for long-term care. And yet, paradoxically, my care ground is blindness.

First Few Days in the Care Facility

So I haven’t written in nearly a week. I wanted to, but on Monday, was still adjusting to being in the care facility. On Tuesday, I felt really off. Then yesterday my husband and I traveled to our new house, the house we bought, and to the solicitor to sign the paperwork. That was somewhat of a hassle, as I cannot make a signature that looks remotely like the one on my passport. So for this reason, the solicitor had two coworkers sign in my place. Thankfully though, the thing is now finalized and we’re officially homeowners!

My adjustment to living in the care facility has been harder than I imagined. On Monday, I did pretty well. Tuesday I started day activities. It was a good day weather-wise, so I was able to enjoy some time outside.

Then tuesday night I suddenly was overcome with shame about my care needs. It all makes me so confused, since if I truly function emotionally at a 16-month-old level, I probbably shouldn’t be able to feel shame. And yet I do. My father’s voice is in my mind like all the freakin’ time. So is my former psychologist’s.

Yesterday, my husband came to pick me up for the official stuff at 11AM. We returned to the care facility at around 6:30. I did okay other than obviously missing my husband. I rationalized that away though. He told me he was a little disappointed in how far the journey is from our new house to here. There will no doubt be a solution, for example me traveling to our house by train and ParaTransit taxi. Still, the conversation did upset me.

I’m constantly facing this bit of cognitive dissonance between the parts of me that are severely disabled and truly function at a young child’s level and the parts that can be married and have a normal life. I can’t and don’t want to disown either, but it’s a huge challenge finding the middle ground.

Besides, even if I wanted to, I can’t go back to my life before moving here. The old day center has a pretty long waiting list and they’ve most likely filled up my place by now. I don’t have a room to myself in the new house. I can’t go back to community support funding from long-term care. Now of course if I truly could disown the severely disabled parts of myself, I might’ve been able to find a solution to at least the last of these problems. Long-term care funding is available to those who live at home too, after all. Maybe I just need to admit that I’m too darn selfish to actually choose my husband over proper care.

Losing Myself and Finding Myself (Reena’s Exploration Challenge #96)

I remember when and where I lost myself. My old self, that is. It was November 2, 2007 at 8:01PM when I stepped onto the bus at Balustrade bus stop in Apeldoorn. I had decided this was it.

I phoned my old support coordinator at the training home. I’d just been told to leave the home’s premises, because according to the on duty staff, I was making them take unwarranted responsibility for me. I had come there in distress and a housemate had offered for me to spend the night with her, so that we had time to find me a new place to stay in the morning.

I wasn’t homeless. That is, I had a roof over my head. In the Netherlands, the word that translates to “homeless” also refers to people who are wasting away in their residence. And I was.

At 8:01PM November 2, I phoned my old support coordinator to tell her I was going to kill myself. I was on the bus and the bus driver and fellow passengers heard me. They called the police and, after a long wait at the police station, I was admitted to the psychiatric hospital in the middle of the night.

At that point, my old self went away. I lost the self that went to college, had plans for working and lived independently.

I’m still not 100% sure who will replace her. When and where I’ll find myself. My new self, that is. I know my old self is gone. Even though I live semi-independently now, I do not have anything close to a “normal” life, whatever that may be. But that’s okay. I know I will ultimately find a new eqwuilibrium, when I’m in a living facility that suits me.

In September of 2006, I wrote a post in my online diary about the two different images I had of myself. One was “white”. This image represented a “normal” life. Living independently, going to university, finding a job, marrying, getting children and whatnot. The other image, the “black” one, represented my need for support. It wasn’t that I needed 24-hour care, but that I needed more than just the once-a-week visit from a support worker to read me my mail that’s normal for people who are just blind.

By April of 2007, I knew the “black” image was coming true, but I was seeing the colors in it. I eventually did live independently and go to college, but I would get sixteen hours of home support a week.

And then that image too died, on November 2. It was hard. I grieved. But I didn’t give up. Gradually, I started to see how colorful a life I can have if I accept care.

The care facilities I’m looking at moving into, couldn’t be closer to the “black” image of myself. They are 24-hour intensive support facilities. Yet I don’t see that life as bad. I see it was exactly as colorful and rich as, or even more so than the “normal” life I envisioned for myself.

I am joining in with Reena’s Exploration Challenge #96.