Tag Archives: Institutionalization

A Time I Ignored My Intuition: Moving Institutions

I haven’t written at all this past week. It was an eventful week, but I feel reluctant to disclose details. I have also been feeling uninspired to write about anything that isn’t just a diary-style entry starting with the phrase “Today I did…”. Well, that’s not what feels right to me.

I was talking to my assigned day activities staff this afternoon. We were casually discussing places I’d lived in before and I mentioned having moved from one institution to another to be closer to my husband in 2013. That was a big mistake.

The memory came back again when I read a journaling prompt in one of my many collections of prompts. It asked me to reflect on a time I had ignored my gut feeling or intuition. This was a time I did. Let me share.

In late 2012, my husband and I had accepted a rental home in a town near Arnhem, Netherlands. I was at the time living in an institution in Nijmegen, about 30km away. There was a lot of turmoil going on about the unit I resided on. For example, there was talk of us moving to another building. We’d just moved from an old building to a newly-built one in September of 2012 and I didn’t like yet another move. Unless it was closer to my husband. So even when the plan for yet another move was canceled sometime in April or May of 2013, I still said I wanted to move to the other institution, which was in the town next to the town in which we’d rented our home.

I had an intake interview in June of 2013. The psychologist was quite mental if you ask me. I’d come from a unit with 24-hour care and he was expecting me to move into a house with a few other patients and staff dropping in once or twice a day. Well, no way! He said that’d be better preparation for my moving in with my husband than going to another unit with 24-hour care and the in-between unit was full. He gave me the choice though, but I had to be quick. It was Thursday and I was expected to move before the week-end, because if I waited till Monday, the bed on the 24-hour care unit may have been filled already.

I felt rather off, but I reasoned my feelings away. I wanted to be closer to my husband, after all, and I wanted to ultimately live with him. Or so I thought. So I moved the next day.

Let me explain that my staff at the ward in Nijmegen had been as supportive as psychiatric care staff can be. I mean, they were sure I needed a lot of support at least. They had denied me the opportunity to go into a housing unit for people with visual and intellectual impairments in 2011, but it takes a lot for a psychiatric professional to go beyond their expertise and see that a person might be best served in developmental disability services even if they have a high IQ.

The staff in the new institution were not so supportive. Even though they allowed me to stay there for nearly four years eventually, they were adamant that I go live with my husband and eventually kicked me out with almost no after care, reasoning that I had refused to go into any home with more care they’d offered. Which, frankly, was none.

Now, nearly two years into living with my husband, I”m facing the pain. I’m still feeling angry towards the staff at the last institution and regret that I decided to move. From now on, I’ll twust my gut feeling when something doesn’t sit right with me.

Starting My Journey Towards (Hopefully) Going Into Long-Term Care

Last Sunday, my husband asked me whether I had any interesting events this week. I said no, I would just go to day activities and that’s it. Last week, the consultant psychologist on my case called the long-term care funding agency to ask how far they are with processing my application. It’d been sitting with them since Dec 20 and they formally need to finish the process within six to eight weeks. They said it’s on the roll, but that they’d been busy because of the holidays.

Last Thursday, my support coordinator asked whether I wanted to start looking at group homes now while we’re waiting for the funding to hopefully be approved. She had a particular group home in mind which has had an available room for months. I said okay.

She called the group home’s manager and was told I’m welcome to take a tour but to contact the home’s coordinator. Well, to make a long story short, I was invited to the tour yesterday.

This is a home for people with profound intellectual and multiple disabilities. The manager stressed that the current residents all function at a mental age of six months or so. Now I find the whole concept of mental age confusing, probably because I myself function much higher intellectually than emotionally. I mean, obviously I assumed these people can’t talk, but well. I don’t mind.

I drove by paratransit taxi to the home yesterday. It is in a city about 30 minutes from my home. I was told to ring the doorbell if I could find it and else to wait for my support coordinator to arrive. From the need to ring the doorbell, I assumed it’s a locked home. It is. I had already read up on it though and had read that the home has a fenced yard. Otherwise, I wouldn’t have liked a locked place. Like, there’s one my support coordinator has mentioned too in the city my day activities is in too, but that’s on the third floor of a nursing home building. I’d feel like I was in a prison then.

I asked the home’s coordinator why this is a locked home, since I assumed all residents are in wheelchairs. Turns out some can walk and may elope. So do I when in a meltdown.

We started the tour in one of the two living rooms. It had a lovely sensory atmosphere. The coordinator asked, since I arrived shortly past noon, whether I’d had lunch. I hadn’t, so she offered me a slice of bread. I liked that.

Once my support coordinator arrived, we talked about my care needs. I function emotionally at a really low level, which is why my support coordinator had believed this place might be for me. The home’s coordinator understood and liked the opportunity to get to know me.

In the home, you have your own bedroom. You share the bathroom with one other resident. Since most clients use diapers, not all bathrooms have a toilet, but the one adjacent to the available room does. Then there’s a large sensory bathroom with a tub. I loved it. They also have sensory materials to use in the living room or an individual resident’s room.

I didn’t get to tour the yard, but was told there are lots of swings in it, including a cocoon swing like the one I love at day activities. They also have one they can use indoors in the living room.

As for the rules, there are no strict visiting hours. Family are actively involved in the residents’ life. They also have volunteers who go for walks with the residents almost each evening. Sometimes, volunteers cook for the residents. When they don’t, the residents get readymade meals like the ones I got in the mental institution. Once a week, a music therapist comes to the home. It’s a facility which offers treatment, so you get the opportunity for physical, occupational or speech therapy if needed. There’s also an intellectual disability physician and a psychologist involved.

During the night, a staff sleeps in an upstairs room. All residents’ bedrooms are downstairs and there’s no need to go upstairs to find the night staff. Rather, they use technology to listen for suspicious noises in the bedrooms, but the coordinator did say this could be turned off in my bedroom if I were able to phone the night staff myself.

If I get funding for long-term care, it needs to be tweaked somehow if I want to live at this place, because my funding would be based on blindness and this is an intellectual disability facility. Then, the manager, physician, psychologist and all need to agree that I’m the right fit. This includes a risk assessment. The coordinator says this is in case of things like severe epilepsy, but my husband told me to mention elopement.

Of course, I feel internally conflicted as to whether I want this to work out. I’m excited about the facility itself, but still feel like I shouldn’t need this much care. I’m afraid the funding authority is going to agree here.

Once I’d returned home, my support coordinator called me. She had heard from the funding authority physician. The consultant psychologist had already explained my needs, but she wants to see me anyway. That appt is going to be tomorrow at 10AM. I assume this is to validate I in fact have the needs the application says I do. Then, the physician will write a report for the funding decision-maker, I guess.

My support coordinator is going on vacation on Feb 7 and won’t be back till the 25th. She said though that, if my funding gets approved while she’s on vacation and I want to start the process of applying at this living facility, I can do so with the care consultant and my support worker.

PoCoLo

Developing My Fighting Spirit

Over at Pointless Overthinking, DM asked what circumstance got you to learn something surprising about yourself. I already responded there. I explained briefly about the time my psychologist removed my autism diagnosis and diagnosed me with dependent personality disorder instead. In this post, I’m going to expand on my answer.

In August of 2016, it had come to my attention that my psychologist had changed my diagnosis. I was at the time hospitalized long-term and had had an autism diagnosis ever since 2007. For a reason I still only partly understand, she had decided to remove it. I’m pretty sure she didn’t fully understand her own reasoning either, as she kept coming up with different excuses. When I involved the patient liaison person and requested an independent second opinion, she even started to negotiate diagnoses.

Being a little too trusting of people’s good intentions, I at first went along with her proposal of a new diagnosis. I wouldn’t get my autism diagnosis back, but I would get diagnosed with brain injury-related emotional issues, which still gave me a reason to believe my impairments weren’t imaginary. It made some sense, in that my psychologst said the brain bleed I had sustained as a baby, was her reason for removing my autism diagnosis.

By November though, my psychologist came up to me to say that she’d rediagnosed me yet again. This was it and there was no further room for negotiations. My diagnosis was changed to dependent personality disorder, borderline personality disorder traits and “developmental disorder” not otherwise specified. I didn’t know what that last one was, but I accepted it anyway.

A week after that, I found out that the “developmental disorder” had not been put into my records at all, but instead depressive disorder NOS had been written into my chart. In Dutch even more than in English, these words are so differently spelled that it couldn’t have been a typeo. My psychologist finally admitted that she’d not diagnosed me with any type of neurological or neurodevelopmental disorder and wasn’t intending to either. She said she’d written depressive disorder NOS into my file because a diagnosis on axis I of DSM-IV is required for someone to stay in the mental hospital. She was vague as to whether she believed I was depressed, being convinced that I was still mostly just dependent. A nurse added insult to injury by saying the psychologist did me a favor by giving me an axis I diagnosis.

When I was first told I’d been diagnosed with dependent personality disorder, I assumed that the psychologist would probably remove it if I fought it hard enough. After all, DPD is characterized by passivness, compliance and an inability to voice disagreements with others for fear of losing care or approval. She said she wouldn’t. Besides, suggestible as I am, I quite easily tacked off the five out of eight required criteria.

At first, I was just angry and defeated. Pretty soon though, my fighter insider, Leonie, emerged. I requested an independent second opinion and this time I left no room for negotiation. I got re-assessed for autism in early 2017 and got rediagnosed on May 1.

Readers who don’t know me, might be wondering why I care. Well, the reason I care about my diagnosis is that I experience significant limitations that can’t be explained by just blindness. I do try my best and this to me signals that something else is going on. My psychologist felt I was making up my impairments. She didn’t say so, but she did say I couldn’t be diagnosed with autism because of my brain injury, yet I couldn’t be diagnosed with that either. She felt that the fact that occupational therapy was mostly ineffective, proved that I had no self-confidence. Her way of helping me develop self-confidence was to kick me out of the hospital almost with no after care. It was effective, in that it did allow the figher insider to fully develop.

Only later did I find out that, even though she rationalizes her decision to this day, it probably wasn’t about me. There are significant budget cuts to mental hospitals, so my psychologist was under pressure to kick some people out. She picked me, probably because of my relatively young age and the fact that I wasn’t psychotic. She claims that dependent personality disorder was the most appropriate DSM-IV code for someone with bad institutionalization syndrome. That completely overlooks the fact that I’d not been admitted to hospital for no reason 9 1/2 years prior, of course.

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.

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.

Angry

Hiya everyone,
My name is Kelly. I am 10-years-old. I am so angry now. I wanna call my mother and shout at her and all that, but the grown-up people say I can’t. I am angry because my parents say I’m angry too easily when in fact it’s them who do stuff like tough love.

I mean my mother says “So you wanna go residential at Bartiméus?”. That’s the school for the blind we go to. So if I’m not being good she’s gonna send me away. She also throws out my toys cause she says I’m defiant because I have too many toys.

Oh and Mrs. B our low vision teacher doesn’t want me to do low vision anymore. Well I don’t care what people think.

I was typing up this memory thingy but then my Internet crashed and I lost the piece I’d written. I will try to share again.

One day a social worker comes by my house to talk to my parents. I dunno who wants it my parents or the social worker. My mother says the social worker had said I’m angry too easily and I need play therapy. I go there during biology class, which is the only interesting class in school. so it sucks. I gotta play with this grown-up man I don’t even know. I wanna flood the water tray and throw out the purple dolls in the dollhouse because ya know, dolls can’t be purple. I don’t know why but my parents take me out of this therpay after four sessions. So why the fuck did they put me into it? I mean I’m not supposed to magically snap out of my anger by four sessions of stupid play therapy am I?

I’m confused now. Yes I’m angry. My parents say I wanna make them miserable. I have stopped caring. They’re gonna put me in residential if I don’t stop playing with my toys anyway and yet I’m suppose to play with this grown-up during biology class. I’m so angry. I don’t know why, cannot write it in English or maybe not even in Dutch either. I’m just pissed off.