Tag Archives: Independent Living

Panicked Ramble

Hi, I’m Carol. I struggle a lot with our autism. I’m a little panicky at the moment. First of all, I woke up with terrible pain in my left shoulder. It’s been bothering me alll day. We finally took an ibuprofen when we got home from day activities at 5PM. It’s better now, but still bad.

This morning, I overheard the staff at day activities talking about a possible new client joining our group. I immediately worried that this’d mean I’d be kicked out. Not because they need the place (or maybe because of that too), but maybe if my challenging behavior worsens as a response to the staff being busier. That’s what happened at my previous day activities. Then again, they had three new clients join the group in a matter of weeks.

Moreover, we had a Christmas meal at day activities today. This meant my day was different from the usual Tuesday. One of the staff at my group had to help clean up after the meal, so she was in the kitchen most of the afternoon.

Then the staff started talking about day activities next week. They’re closed on Monday but open on thursday and Friday. Then, only six of us will be at the center, which really isn’t enough to justify staff being there. They said that the center normally closes if fewer than ten clients will be there. We want so badly to attend day activities and I somehow understood they’re considering closing the center next week. The staff reassured me, saying they had to set this rule for next year but for now the center will be open.

Still, when I got home, the whole thing overwhelmed me. I started seeing images in my mind of myself with worsening challenging behavior. I felt unsafe at home alone and rejected too. Like, they kicked us out of the independence training home in 2007 and out of the institution last year because of our behavior. Rather than giving us more care when we needed it, they gave us less. Same with the old day activities place. I really hope we can somehow find us suitable supported housing, but I’m so scared that no place wants me. I finally called the on-call nurse at the psych hospital and had a chat with her. That was good, but I feel guilty about having called, because my team say I really shouldn’t need the prescription phone call anymore.

Where Do I Belong? #Write31Days

One of the questions in The Self-Exploration Journal is simple, yet not so simple to answer. It is: “Where do you belong?” For today’s #Write31Days post, I am going to attemtp to answer this question.

I am a restless person. Even though I crave stability, I keep fleeing from wherever I am. I can never seem to find a place where I feel I belong.

I must say though, it probably has to do with control. I have a pretty horribly external locus of control. This means that I have a feeling that others or circumstances control my life, rather than life being a bunch of choices I make. This isn’t necessarily healthy, but in y case, it is somewhat realistic.

I grew up with parents who had my life planned out for me. I knew by the time I was nine that I’d leave the house at eighteen to go to university. It scared the crap out of me. Lately, I’ve been feeling an insider who holds these memories.

I left the house at nineteen to go into independence traing. That wasn’t what my parents wanted, but I for the first time in my life showed some major rebellion. Even then, I needed my parents’ albeit reluctant approval to actually take the step.

I continued to consistently seek approval from others for my major decisions. This may’ve been a major reason I got moved into independent living after the training home despite the fact that the staff and I agreed this wasn’t the best possible placement for me. The staff after all, had promised my parents they’d prepare me for independence.

I landed in a mental hospital three months into independent living. By this time, I’d lost every bit of self-determination I had. I didn’t know what I wanted and just let the psychiatrist admit me to the hospital.

I regained a small amount of self-determination over the years of my hospital stay, only to have it all destroyed by my last psychologist. She said I was being dependent, not for letting others make choices for me or for needing their approval, but for demanding care she felt I didn’t need.

Now I’m living with my husband. I don’t feel safe here. Not relationally – my husband is lovely. I mean that I lack the support I feel I need.

So I often flee this place too. I don’t feel like I belong. But will this ever change? Will I ever find the peace of mind to live a stable life without needing to constantly be on the run?

Maybe if I get into long-term care, I will. After all, then I’ll hopefully finally feel safe without the pressure of needing to be re-assessed for care at least every year. Then I can have goals that I can take years to maybe meet or maybe not. Maybe then I will find a place where I belong.

My Successes in Life #Write31Days

Welcome to day four in #Write31Days. I use this challenge to write on personal growth. I’m struggling a lot, so as to get myself to think more positively, I decided to take the day one prompt from Lisa Shea’s journaling prompts on positive thinking. It asks us to list our successes in life. This is rather difficult, as my successes are often used against me. For example, the fact that I completed a high level high school, is used as “proof” that I don’t need lots of care. I am just going to write anyway and see where this takes me.

1. I completed a mainstream, high level high school. This doesn’t just show my academic ability, but my persistence too. I hated it with a vengeance from the moment I started it, but finished it anyway.

2. I completed my first year of college. Same shit really. I liked my major though.

3. I tried to live independently. I failed, but I still consider it a success because I tried the best I could. Again, this shows my persistence.

4. I have been a pretty consistent blogger for over fifteen years.

5. I got a piece published in an anthology. In 2015, my piece was published n a book on typed communication by autistic people.

6. I learned to use an iPhone. I thought last year that I may not be able to learn to operate new-to-me technology anymore, but I was.

7. I prepared my own breakfast today and didn’t spill it everywhere.

8. I am surviving. Having been suicidal on too many occasions to count and having run into a little too many other dangerous situations, I’m proud to be alive. Not happy, but proud.

Lessons Learned from Regret #Write31Days

Welcome to day three in my #Write31Days challenge on personal growth. Today, I picked a writing prompt from The Self-Exploration Journal, which is a 90-day challenge. The prompt is about something you regret. What did this experience teach you in the end?

I am choosing my decision to move from the city of Nijmegen psychiatric resocialization unit to a long-term care unit in Wolfheze, a town near Arnhem in 2013.

The rationale for this decision was totally understandable. My husband lived in Doorwerth, a town neighboring on Wolfheze. Since we were exploring the possibility of me moving out of the mental institution and in with him, it seemed just about logical that I’d move to Wolfheze.

What I hadn’t anticipated was that I’d encounter less than supportive staff in Wolfheze. When I went for an intake interview, the responsible psychologist wanted to place me in a sociotherapeutic house, whch meant you’d live practically independently with a few other clients but the staff would come to your house at set times. They reasoned this would be the best preparation for independent living. I don’t think they’re wrong about that, but it became more and more apparent that I couldn’t cope with independent living like this.

So I opted to go into the long-term unit with 24-hour care instead. Even this was a huge adjustment, as staff started expecting me to learn practical independence skills that were too overwhelming.

My new psychologist also pretty soon removed my diagnosis of dissociative identity disorder and PTSD, changing it to borderline personality disorder. From there, it went further downhill. My first psychologist was good enough. She eventually did realize that I’d need lots of long-term support even when going into independent living.

In 2014, I got a new psychologist. This wasn’t my decision, but the old one was leaving. This psychologist had the worst impact on me of all mental health professionals I’ve had in those 9 1/2 years in an institution. She decided right from the start that I’m not autistic. She started to tell me I have acquired brain injury and need to go into a training home to learn independence skills for that. Now let me tell you, i already went into a training home that caters to among other people, those who are blind and those with acquired brain injury. I am confident that this training home offered me the best possible independence training. Yet because it failed, I had failed and I had to try all over again. Since I didn’twant that, I was dependent and misusing care and needed to be kicked out of the institution.

I was eventually kicked out of the institution in 2017. I only later learned that it wasn’t about me, but about the huge budgets cuts to mental health. Of course, the Nijmegen institution would have to face budget cuts too, so I might’ve gone the same route had I stayed in Nijmegen. However, then at least I’d have had supportive staff.

What I learned from this whole thing is that supportive people are the most important. You can live in a better home or a better area, but if the people who support you through and through aren’t there, it’s not going to work.

Struggle #WotW

I want to write so bad, but I’m struggling. Struggling to get myself motivated for writing. Or for anything. Struggling to write coherent sentences. Struggling with my thoughts floating through my mind. Struggling with pretty major depression. I’ve been in survival mode just a bit too long. Now I’m ready to crash.

I am participating in Word of the Week (or #WotW) for the first time on this blog. My word for this week isn’t a shiny, happy one. It’s “struggle”.

This week was an eventful one, yet nothing really did happen. If that sounds like a contradiction, it’s because it is.

Early in the week, it became obvious to me that my depression wasn’t lifting like I’d hoped it would. I mean, I’d hoped that, once my support coordinator was back from vacation and I’d have home support three times a week again, I would feel better. I didn’t. I felt worse.

Thankfully, my support coordinator offered to come by on Tuesday for an extra hour of home support. I am so happy she did, for I didn’t know how else to make it through the day.

On Wednesday, my support worker came by in the afternoon. We ran some errands and I thought I’d do better that day. Not so. In the evenng, when it became apparent my husband wouldn’t be home till past 7PM, I had a meltdown.

On Thursday, I slept in till past noon and again lay in bed for a bit at 2PM. I could’ve been in bed all day, but my support coordinator would be here by 3PM. Thankfully, she was able to motivate me to go for a walk. That was when I decided to start the process of hopefully getting into supported housing. I don’t have my hopes up, of course.

I know that if the powers that be see this post and conclude from here that I’m just struggling with depression, they’ll not provide funding. After all, treatment precludes support. Besides, mental illness only qualifies you for temporary support. So I’m hoping the powers that be will see my needs beyond depression. I’m also blind and have a brain injury and autism, after all.

Interestingly, I had no problem convincing my psychiatric nurse practitioner that I do need 24-hour support. He was one of the first to ditch the dependent personality disorder label I’d been given by my last institution psychologist. As he said when I called him on Friday, I may be a little dependent, but that’s normal because, duh, I’m blind. I’m not sure that’s entirely true, in that to my knowledge most people who are “just blind” don’t need as much support as I do. However, I’m not “just blind”.

The Reading Residence

Leaving the Path Paved for Me

Today’s Finish the Sentence Friday is a stream-of-conscious writing exercise on the prompt of “leave”. I have not been inspired to write much lately, not even snippets that aren’t “blog-worthy” but that I could’ve published here anyway. Yet this prompt immediately turned on a lightbulb in my head.

Yesterday, I made the decision to schedule an appointment with the care consultant for the agency I receive home support and day activities from. We’re going to discuss my options regardign going into supported housing. There I said it and now I’m hoping my parents never read this blog.

Nothing has been decided yet, except for the appointment with the care consultant having been set for October 4. It isn’t certain that I can get funding for supported housing. I’m not getting my hopes up too high, as there are huge budget cuts to long-term care for people with lifelong disabilities, which is the path I want to go. I could also go the community support route, where I could go into supported housing for the mentally ill temporarily. That most likely wouldn’t be of much benefit, as it’s heavily focused on “rehabilitation”.

However, assuming I can get into supported housing one way or the other, this will mean I’m leaving my husband. Not as in divorce, as living together is not required to be married here in the Netherlands and my husband has said he doesn’t want to leave me. In fact, he supports me every step of the way.

It also, however, means leaving my passing-for-non-disabled self behind. It means leaving the path paved for me by my parents (and my last institution psychologist). I’ll be a huge disappointment to them. I have been thinking of how to break the news to my parents. Thankfully, I can wait with that until the point, should it come, where I’m actually moving.

Since I scheduled the appointment yesterday, I’ve been flooded with memories. I told my support staff at day activities and that got me talking about the time I lived independently in 2007. At the time, I considered getting into supported housing too, but my support coordinator said I couldn’t be in their supported housing with my challenging behavior. This may be the case with my current agency’s supported housing too. That’s one advantage of independent living. After all, no matter how much I struggle in independent living, my husband won’t kick me out for needing too much care.

Next Year

Last week, I wrote a post based on a journaling prompt from the book The Self-Exploration Journal about where I’d want to be years from now. The next rpompt asks us to write about where, given our current daily activities and routines, we can realistically expect to be in a year.

If my daily routines and activities of the past sixteen months, living with my husband, have taught me anything, it’s that nothing is certain. I thought, after my last overdose in Ocober of 2017 that I would be stabilizing now at my old day activities and with my home support. That didn’t work out, because within months I was told I’d have to leave the day center eventually.

Now I’ve only just settled in at my new day activities placement. I am pretty content with how things are there now, but am not sure I feel excited about evnetually going four full days rather than just mornings. I mean, I still struggle a lot with overload.

At home, spending my afternoons alone, I feel awful. This could be depression sinking in again, but I’m not sure.

Realistically, based on my current routines and activities, can I expect to move within a year? I mean, I badly want to, but am even undecided as to how I want to live. Maybe next year I’ll be living in another house with my husband. Maybe I’ll be in supported housing after all. Maybe – most likely – I’ll still be holding on by a thread as I live here.

Mental health-wise, I don’t expect I’ll be doing much better in a year. That’s partly because my mental health issues are rather complex and partly because we don’t have a clear treatment plan that everyone agrees on.

I don’t expect much improvement in my physical health either, though I do hope to be a bit more in shape. Based on my current habits, I cannot expect to be at or near a healthy weight yet, but will hopefully have lost some weight.

I would really like to do some more learning. I tried to learn German for a bit a few weeks ago, but my head spun with all the information. Maybe I’ll be able to do some learning as I go by engaging with the books and blogs I read. I’ll also hopefully keep up the daily writing practise.

Consultation Meeting at Day Activities

So I had a meeting with the Center for Consultation and Expertise consultant at day activities this morning. First, I talked some with her alone. We discussed my care needs in some more depth than we’d done when she’d visited me and my husband at our home. I still feel the ideal situation is that my husband and I could still live togehter but close by a care facility. I also mentioned that, though my husband supports me wherever I go, he has some reservations about us living in a lean-on apartment together. A lean-on apartment is where you still live independently, but close by a care facility. Since my husband and I together make too much money for renting a home too, and we don’t have a huge financial reserve, choices are limited. This means most likely I’ll either have to manage with the same amount of care I get now, but we could move to a larger town, or I’ll need to go the long-term care route and essentially live away from my husband during the week. I can manage okay’ish now and I don’t want to risk my marriage for better care, so I’ve already reluctantly set my mind on the former.

We also discussed my needs for mental health treatment. We discussed the insiders and I named a few. The consultant, herself an educational psychologist, took my experience surprisingly seriously. I had expected she wouldn’t, given how she seemed to respond when my husband said he’s married to Astrid, “pieces” or not. I mentioned having come out to my psychiatrist. I’ll have a meeting with her and my nurse practitioner on October 2. I mentioned the psychiatrist having said that my treatment may take another five years. Again surprisingly, the consultant didn’t react negatively to that, saying instead that if I felt it’d be beneficial in the end, I should go for it. We also went into childhood trauma a bit, which is the reason the insiders are here. The consultant recommended I discuss getting EMDR with my psychiatrist and nurse practitioner. I said this had been recommended by the psychologist who rediagnosed me with autism in 2017 and on whose report my treatment plan is based. However, that psychologist recommended I do dialectical behavior therapy first. The consultant disagreed, saying that nowadays, people who aren’t very stable or even people with intellectual disabilities can benefit from modified EMDR. She mentioned a therapist’s name that I couldn’t fully understand and a quick Google search came up with nothing.

Then, we drank coffee and after that, the consultant talked with my day activities staff. She asked what activities I do during the day. She also recommended my staff respond proactively to my becoming overloaded. I’m not so sure I like that, but I think it’s for my own good anyway. I mean, we again went on a long walk this morning and I couldn’t fully keep up. As a result, at the end the staff decided not to take me on the full, hour-long walk again for now. I so badly want to meet my goal of 10,000 steps a day, so I feel pretty awful having to cut back.

On October 4, the consultant will make her recommendations at a meeting with my home support coordinator, assigned day activities staff and me. I’m hoping for the best.

Tuesday Ramble

I don’t really know what to feel. Today was, well, chaotic. It started out with me getting up at 7:10AM as usual, still tired as usual. My energy level usually rises during the day, but being on high doses of psychotropics still means I’m at least somewhat tired all the time.

At day activities, everyhing went okay. I did some table-based activities and went for a walk with one of the staff trying to learn the route around the building. Meanwhle, a lot was on my mind. Yesterday, the staff had been telling the new intern how one of the clients acquired his cognitive disability. This was such a sad tale. I mean, yes, it may not be ideal to be born with a severe intellectual disability, but at least then you don’t know better. This man, the staff said, probably doesn’t realize much of what his life was like before his brain injury.

Still, it made me sad. I, after all, do know about my life before my extreme autistic burn-out in 2007. I could reason that, since high school was hard for me too, I should be happy I no longer experience that level of pressure. And I am. But that part of me, the would-be-university-professor, is still there.

After lunch, I went home. I wasn’t even home for ten minutes when we had a massive power outage. I didn’t discover it at first, only noticing my Internet connection had gone. Then, I discovered that my computer was running on battery power, so I went to check the rest of the house to see if we still had power anywhere. That’s hard, being blind with light perception, as I’m not sure I trust my vision enough to check the lights but I tried to anyway., I eventually went to check some other electronic devices throughout the house. Then, I called my mother-in-law and texted my husband. My mother-in-law texted back that she couldn’t find any news about a power outage, but my husband called back to let me know the whole village was out of power. Later, we joked that I had somehow caused the power outage.

My mother-in-law came to pick me up, so that while at my in-laws’ home I could at least do something on the computer. Which reminds me of how dependent on electronics I am, especially when alone. Like, I hardly ever touch my phone while at day activities, but at home, practically the only thing I do involves my computer or phone.

In the evening, my father called me by accident. He never calls me and even when my paternal grandma was dying, all I got was a text message from my mother. As such, I immediately panicked, because why in the world would he suddenly want to call me? As it turned out, it was nothing.

Now I’m supposed to feel good, or at least okay, but I don’t. Oh well. No time for processing, as I’m off to bed in about fifteen minutes.

My Big Burn-Out #TakeTheMaskOff

Trigger warning: suicide.

I so badly wanted to finish the #TakeTheMaskOff series on my other blog, but each time a topic comes up, I feel like I already covered that there. I probably did, but then again, I do want to share. After AutisticZebra posted the story of her big burn-out, I’m going to do the same. For those who know me in real life or through my other blog, this is probably old news, but well.

The year 2007 was an extremely eventful year. Three days in and I was given an ultimatum at the independence training home for the disabled I lived at at the time: another major meltdown and I’d be kicked out. The staff had already referred me to the local mental health agency for what they thought was autism, but they just wanted confirmation that they were doing the right thing. They had no intention of actually changing their support style, because they were allegedly already supporting me based on the assumption that I’m autistic.

On February 10, I had said major meltdown. I had had a fight with my parents over them participating in my autism diagnosis the night before and had been incredibly irritable all day. My least favoirte support worker was on shift, a pretty uncaring woman who kept dismissing my panicky response. So I had a meltdown. And several days later, after the staff had conferred, got told that I would be kicked out. The date for my eviction was set for June 1, which was fair enough given that they usually need to give two months’ notice.

Several weeks later, I was finally, at the age of 20, diagnosed with autism. I was relieved. I could start counseling with a very supportive community psychiatric nurse, who managed to convince the staff at the training home to give me more time to find new housing.

By July 3, I was given the keys to my new apartment in Nijmegen, the city where I’d start college. I moved out of the independence training home on August 1.

The three months that followed are a blur to me. I had almost daily meltdowns, in which I ran off or injured myself. The police were called repeatedly, but I “wasn’t crazy enough” to be admitted to a psychiatric hospital.

That is, until one day I was. On Friday, November 2, I had been wandering all day through my parents’ city, where the independence training home was located as well. In the late morning, I had been kicked off the train station for melting down there on my way to the train back to Nijmegen. I couldn’t count on my parents to support me, so desperately, I went to the training home. I wasn’t supported there by the staff either, so wandered through the city for the entirety of the afternoon and part of the evening. A training home former fellow client then offered me to sleep at her apartment for the night, so that we could find a solution in the morning. That wasn’t acceptable to the tstaff, so I was required to leave. I left the training home, took the first bus to the train station and phoned my support worker in Nijmegen to let her know I was going to commit suicide by jumping in front of a train. I probably half realized that this was going to be picked up, but still tried to convince the fellow passengers on the bus not to clal the police. I remember a woman sitting next to me trying to comfort me, saying that help was on its way. At the station, I was picked up by the police, who took me to the police station and rang the crisis service in that city. This was when I finally got admitted to a mental hospital.

Looking back, this is a clear example of autistic burn-out. I was reminded of this once again by the Center for Consultation and Expertise consultant who came to visit me this morning. I was also told by that same consultant that my former psychologist’s twisting the truth to find a reason to kick me out of the hospital – by among other things taking away my autism diagnosis -, wasn’t about me. It was more likely about the budget cuts to inpatient mental health treatment.