Category Archives: Personal

I’m Officially Home!: The Road to My Discharge from the Mental Institution

It’s official: I am home. Yesterday was my formal discharge date from the institution. It would’ve been May 1, but got delayed one week because I needed mroe time to make arrangements for my after care. Today, I’ll share my journey to getting the care I need and living in the house I want to live in with the man I want to live with.

Like I said, my original discharge date was May 1. However, a week before that, nothing had been arranged in the way of after care yet. I’d have my first appointment with a psychiatrist from the community treatment team that Friday, April 28. That was all my psychologist said she was required to do in terms of making sure I am in care once discharged. Apparently, she and the social worker had deliberately handed me the responsibility of making sure I’d have day activities and home support, only without telling me I had been handed that responsibility. I didn’t find out about this till April 26, when I had my “exit meeting”, as my psychologist called it. Call me a cynic, but I immediately thought of the Swiss end-of-life clinic by the name of Exit.

After my “etit meeting”, I was very much in distress. I called the patient advocacy person, but she couldn’t do anything for me, as I’d be in the community team’s hands. I called my husband, who was on the road. Desperate, I called my mother-in-law. She asked for my psychologist’s number and somehow convinced her to give me that extra week. It was suggested to me that all it’d take to make sure I’d have day activities was a phone call to the day activity place manager, who was on vacation during the last week of April and would be back May 2. It wasn’t exactly that simple, but in the end it was close to that simple indeed.

On April 28, I had my intake interview with the community treatment team psychiatrist and nurse practitioner. They were much more supportive than anyone in the institution had ever appeared to be upon first meeting them. I suspect this psychiatrist has never worked for a long-term care unit, as she was surprised I didn’t get any therapy there other than day activities. “But it’s a psychiatric hospital,” she said. There she nailed the reason I’ve called it an institution for years: there is very little in the way of actual psychiatric treatment. In fact, a student nurse at one point referred to clozapine, the last-resort antipsychotic the majority of the patients on my unit take, as palliative care. I know for some people it’s a miracle drug, but for many on my unit, all it did was keep them just about stable enough that they could handle an unlocked door.

Like I said, my meeting with the community psychiatrist and nurse practitioner went well. We discussed my syptoms and needs. They would be contacting the home support team, which is with the mental health agency, on my behalf. If no day activities had been arranged by May 12, when I’d have my next appointment, they would also work their arses off to get me day activities.

Last Thursday, May 4, I had appointments at two day activity places. One is for traumatic or acquired brain injury survivors, while the other is for people with an intellectual disability. I had my doubts regarding the first one, which I’d visited in August of last year. This was only confirmed when I went back for an intake interview. It was all very formal. Though this could’ve been because I had already visited the place, it made me feel a little unwelcome. When I disclosed I was also going to look at the other place, the staff at the first place said this might be more suitable indeed. I’d still be welcome at the brain injury place. However, I felt there was too little I could do independently enough there.

I had a taxi drive me to the other day activity place. When I opened the door, some clients welcomed me. They found a staff member, who seated me in a spare room and poured me a cup of coffee while I was waiting for the head staffer to come see me. I talked to him and to one of the staff at the group I’d be placed in. The “orange group” is a group of relatively capable intellectually disabled people who do simple manual labor tasks like packaging, sorting etc. Fortunately, there is no pressure to be quick or do it perfectly. I was a little worried the tasks would be incredibly boring and too difficult at the same time, but I realized it’d either be this or no day activities. Besides, the staff and other clients were very enthusaistic and welcoming. It looked like I might actually have day activities right after my discharge.

Yesterday, however, I had a meeting with the social consultant in charge of my case. The day activity place had already made all arrangements so that I could start “working” there and in fact, yesterday morning I was awoken by the taxi driver ready to drive me there. I had clrearly told the day activity staff that I’d first meet with the social consultant and start “working” on Tuesday, not Monday. For a bit, as I met with the social consultant, it seemed as though it’d all been one big mistake and I wouldn’t be able to start day activities today. However, late in the evening, I received an E-mail from her saying she had pre-approved me for day activities and I could in fact start “working” today.

Psychological Evaluation

Last week, I would’ve had my ten year Aspieversary/autiversary or the anniversary of my autism diagnosis. I did realize this and even started writing a blog post about it, but it didn’t feel right to celebrate an anniversary of something that no longer is. After all, I’m no longer diagnosed as autistic. I was also quite shocked when it dawned upon me that I’d been institutionalized for almost the entirety of these ten years. I then started thinking about the ten years before that and how much longer they seemed to have taken. Time flies when you’re getting old(er).

I then started writing a post on the psychological evaluation that I had the day before my would-be-Aspieversary. That was hard too – both the evaluation and writing about it. For the first time that I had a psycholoigical assessment, the personality testing was in fact the easiest – or least difficult – part. I just can’t get past the fact that I did rather poorly on some of the neuropsychological tests and didn’t seem to score as great on the intelligence test.

The neuropsych testing consisted of a couple of memory tests. Most went okay, but with one, I kept losing focus. Then there was a test for semantics, the way words and their meanings are formed and articulated. I had to name as may words starting with a given letter or in a given category (animals, occupations) in one minute as possible. In the animals category, I started blurting out donkey, squirrel and Brazilian wandering spider, which are three words I use repetitively, and then I got stuck. I don’t know what the average score is of course, but some of my staff tried this one and did much better than I did. Of course, they weren’t in an actual test setting.

Then I got what I think is the verbal part of the Wechsler Adult Intelligence Scale. Older versions of this intelligence test consist of a verbal and a non-verbal (performance) part, but the performance part isn’t possible for me because I’m blind. The current version does not provide a verbal or performance IQ score, but it still consists of verbal and non-verbal tasks. I did okay and still seemed to have the same strengths (similarities, arithmetic) and weaknesses (compreheension) as when I last had an intelligence test twelve years ago. I don’t think I scored as mind-blowingly high as my parents would want me to though. When I told my mother so, she said I just don’t want to know that I’m gifted. I don’t know whether she meant that I didn’t try my best or that I underestimated my actual performance.

I also got some tests that seem to be specific to autism. One of them was a kind of weird test that seemed to measure theory of mind. I heard these little stories and then had to say whether a character had said something inappropriate. Then there were follow-up questions abou thow each character would feel, whether they could know that what they said was inappropriate, etc. I got rather frustrated with this test.

Some of the questionnaires also seemed to be relevant to my possible autism. One was some kind of systemizing/empathizing test. I once took a similar (or the same) test online and scored below-average on both scales. I mean, I am interested in systemizing, but I can’t actually do it right in daily life. For example, I can’t balance a checkbook, but I do take an interest in random strings of information, such as share prices (yes, I did at one point perseverate on that). There was also this test that asked about the ability to read one’s own feelings. This was a rather weird one to me, but that may be because I barely understand how anyone would be able to tell the difference between for example feelign excited and feeling enthusiastic.

Lastly, I got a coping sytles questionnaire and several personality tests. I scored high on avoidance twelve years ago when I got the same coping styles questionnaire and I think that has only gotten worse. After all, all I’ve learned in the mental hospital is to distract or take a tranquilizer. This is the worst coping style according to my college psychology professor. I did okay on the personality tests. I mean, it’s likely I have at least some personality disorder traits, but that’d show in my behavior too anyway.

A week has gone by since the psychological evaluation. My husband had to fill out another questionnaire about me again over the week-end. It was some kind of executive functioning questionnaire and I felt rather awkward at how many boxes my husband ticked. I also got a call from the student doing the evaluation on Monday with one more questionnaire. It seemed to be the other half of the systemizing/empathizing thing. I got to do that over the phone. The student also asked for my E-mail address, so that the psychologist could contact me regarding some questions and concerns I had written down and taken to the assessment.

I have mixed feelings about the possible outcomes of the assessment. I mean, I don’t even know whether I want to be autistic after all. Of course, you’d think, most people wouldn’t choose to be autistic over neurotypical. That’s not what’s at stake here though, since I won’t change neurotype if the psychologist diagnoses me one way or the other. I still think I need the validation that my impairments are real. Realizing these impairments makes me feel a little inferior to the people I love, and in that sense, it’d be great if I made them all up. Of course, that may be internalized ableism.

First Appointment for My Second Opinion

Like I said on Tuesday, I had my first appointment for the independent second opinion I requested regarding my diagnosis yesterday. I had chosen to be referred to my province’s university hospital, where the psychiatry department has expertise on autism as well as personality disorders. I after all wanted them not to be too prejudiced for or against an autism diagnosis for me. I mean, I have had autism diagnosed previously and think I have this, but there must be a reason my treating psychologist doesn’t agree. The most important reason for this is her believing that, because I developed hydrocephalus as a baby, my diagnosis should be some form of unspecified brain injury. Since this isn’t in the diagnostic handbooks, I’m now left with “just” a personality disorder, a diagnosis I dispute.

I had a two-hour meeting with a clinical neuropsychologist and a medical psychology intern. Because I had somehow seemed to remember the appointment would take only 30 minutes, this was quite a change of game to me. I however handled it well and was in fact glad that I could explain things. I had thought they’d just rely on the questionnaires I’d filled out last week, which couldn’t possibly give them a complete picture.

First, the neuropsych said I’d come to the right place, as this psychiatry dept know brain injury, autism as well as personality disorders. I said I knew and that I’d requested to be referred here myself. She then asked me to explain my impairments. I focused on sensory and organizational skills difficulties, as my social impairments are not too obvious in my current setting. I mean, I’ve heard nurses say I can’t possibly be autistic because I can hold down a normal-sounding conversation with them. I can, but then again conversations like this aren’t meant to be truly reciprocal. I instead gave examples of sensory difficulties and problems with daily activities.

Then we went over my struggles and strengths throughout life. I started by recounting my elementary school experiences. I realized I remembered social isolation from as early as Kindergarten on. I also mentioned I remembered feeling practically burned out by age five, insofar as a five-year-old can have this experience. I forgot to mention that my parents have always said I was a cheerful preschooler at least and didn’t start having serious trouble until I had to learn Braille by age seven, presumably because I didn’t accept my blindness. I did however explain my difficulties in accepting my blindness. I explained that I temporarily accepted my blindness, or at least pretended I did, when I went to regular school at age thirteen, but never truly accepted it.

I mentioned having some friends in first to third grade, mostly older girls who babied me. I did have one friend in later elementary school too, but did experience more social isolation and trouble navigating the more complex friending process from age nine on. At this point, my behavior problems also became worse. I mentioned screaming, self-harm and physical aggression, though I only know I was physically aggressive because my mother reported it to my diagnostician in 2007. I also mentioned being good at academics. The psychologists asked about my interests. I mentioned drawing maps and calendar calculation. She didn’t ask about play, which was one area in which I was okay if behind. I mean, I still played with dolls by age twelve, but that may be considered a strength in the realm of autism, as it shows imagination.

My parents encouraged me to develop age-appropriate intersts when I was about ten. Looking back, I don’t think they knew what my peers were into either. I told the psychologist about the Backstreet Boys poster on my wall, that I only had for the purpose of fitting in. Another example that I only remember just now is my pretending to be an Ajax fan. Ajax is a major Dutch football club from Amsterdam. I am originally from Rotterdam, which has its own major football club whose fans hate Ajax, but I went to school in another city, so all my peers were Ajax fans.

When I was thirteen, I transitioned from special education to a mainstream secondary school. I mentioned feeling extreme stress then, being bullied and isolated. I did mention the four girls I was “friends” with for a few months in my first year at this school, explaining that I was way too open and clingy to them and pushed them away. I also mentioned clinging to my sister’s friends’ big sisters in later elementary school. I mentioned seeing friends in a more materialistic way than most older children see their friends. I mean, when one girl in late elementary school gave her friends candy, I believed I was her friend when she gave me candy too. I even imitated her friends by asking this girl, in the same tone of voice as they did, “Got something to chew on?”

I didn’t go into that much detail about my secondary school struggles. Honestly, I barely remember this time period, even though I kept a diary throughout secondary school. I did mention feeling like I was out of my own body or living in a movie throughout adolescence. I am surprised as I write about and recall my meeting that I barely used technical terms. I consider this a good thing.

I went on to describe my increasing struggles with self-harm and aggression after high school. I described my crisis of 2007. I didn’t go into that much detail regarding my psychiatric hospital years. I did mention some of my current struggles, like with handling unexpected situations. The psychologist asked about my challenging behavior, such as wandering, self-harm and aggression. I said it’s a lot less frequent now that I’m on medication but still happens. The psychologist wants to speak to my psychologist at the institution regarding psychological treatments for these behaviors. I haven’t had any and have never had the impression that my psychologist feels any would be helpful. This got the neuropsychologist to say she may also write some reccommendations for treatment into her report.

At the end, she concluded she does see signs of autism, but wants my parents (likely my father) and husband to fill out some questionnaires too. I will also get a bunch of questionnaires. Since they are in print only, I said I’d need help filling them out. The psychologist offered to have the intern help me, as I would not feel truly free to be honest to my nursing staff or even my husband. I liked that. She also said she wants me to get some neuropsychological testing done to provide further validation for my strengths and weaknesses. I said my psychologist had not felt this would be possible or even necessary. Some tests may not be possible but others are and this psychologist does feel it’d be helpful.

I also got a bunch of questions regarding depressive symptoms. The psychologist at one point pulled out what sounded like the DSM criteria for major depressive disorder. She didn’t finish questioning me on them, as she drifted off a bit.

I had to have bloodwork done to rule out physical causes of psychiatric symptoms. The intern took me to the waiting room, where my sister-in-law was waiting. She came to me, but I didn’t recognize her and the intern had not seen her before, so she assumed my sister-in-law was the nurse for the blood draw. As she lead me out of the psychiatry department, I remembeed to ask who she was and to say I needed to have bloodwork done. We returned and a real nurse came to do the blood draw. I am extremely hard to draw blood from, so the nurse tried three times, then called a colleague. After he drew blood, he asked whether this had been an intake interview. Since that’s what it’s called, I said “Yes”. This meant I had to have my blood pressure (pretty high), temperature, weight and height (I’m still obese) and waist and hip measurements taken. I forgot to say I’m not going for treatment here, which seemed to be the reason the nurse wanted these numbers. I had not grown in abdominal measurements since they were last taken last year, thank goodness.

Overall, I’m pretty happy with the way this appointment has gone. I will get a letter setting a date for an appointment for the questionnaires and tests.

Spectrum Sunday
Keep Calm and Carry On Linking Sunday

Diagnonsense Once Again

A few weeks ago, I wrote about my disappointment at not finding the right day activities or home support. Unfortunately, it didn’t end there. Over the past few weeks, I have been finding out about the details of my changing diagnosis. Or rather, diagnonsense, as it’s all extremely odd. Let me explain.

In late June, my psychologist pulled me out of day activities to inform me she had changed my descriptive diagnosis. A descriptive diagnosis is a brief description of what’s wrong with the patient, which should be a little more personalized than the patient’s DSM-IV (we still use DSM-IV here, which is weird enough) classification. Her descriptive diagnosis was mostly okay’ish, with one exception: she said that autism as well as dissociative identity disorder and PTSD had been previously diagnosed, but these weren’t too clear. At first, I thought she meant just the DID/PTSD wasn’t clear. I was wrong. She had, in fact, removed autism from my diagnosis.

Now I have been assessed for autism three times in the past and was diagnosed with it all these three times. There were some questions as to whether some of my problems are due to blindness, but overall it was clear that there was more that was going on with me and this “more” is most likely somewhere along the autism spectrum.

I however was also born prematurely and had a brain bleed leading to hydrocephalus (“water-on-the-brain”) as a baby. This was known to all people who previously diagnosed me as autistic and my first diagnostician even added hydrocephalus to axis III (for physical health problems) of my DSM-IV classification. This was when I was in outpatient treatment. For some reason, hydrocephalus was never on axis III while I was hospitalized. It still isn’t. Yet my psychologist says she cannot diagnose autism because of the complications associatedd with my premature birth. Never mind that there is an enormous amount of literature showing that former preemies and children with infantile hydrocephalus are more likely to be autistic than those without these experiences.

Now like I said, my psychologist didn’t add hydrocephalus, neonatal brain injury or anything like that to my diagnosis. She did briefly mention it in my descriptive diagnosis, but it’s your DSM-IV diagnosis which determines your “diagnosis-treatment combination”, ie. what care you’ll get. My DSM-IV classification now lists borderline personality disorder as my diagnosis. Oh and adjustment disorder, which my psychologist says explains why I can’t handle changing situations. It doesn’t. An adjustment disorder is an extreme, disabling response to an identified stressor. For example, when I lived independently and this caused me to land in crisis, I was diagnosed with adjustment disorder to justify my hospitalization. Back then, adjustment disorder was a justified cause for care under the basic (mandatory) insurance pacakage. It no longer is. Long story short: essentially, I’m stuck with just a borderline personality disorder diagnosis to base my care on. It doesn’t seem to matter that BPD is an adult-onset disorder and I’ve had problems all my life. It doesn’t seem to matter that BPD doesn’t explain my sensory and cognitive overload. Oh wait, maybe that’s just me trying to manipulate people into not exercising their right to overload me.

Moving On: Moving in With My Husband, Maybe

As regular readers will know, I reside in a psychiatric institution and have since 2007. Originally, the psychiatrist who admitted me did foresee that it would not just be crisis intervention – getting me to sleep better and pop out of my suicidal thoughts. In addition, we’d need to find a suited supported housing placement to move me to from the psychiatric hospital, because I’d ended up in a crisis from having to live on my own. It just didn’t happen. No suitable supported housing place could be found and, more than seven years on, I’m still residing on a psychiatric unit.

When my now husband became my boyfriend and then my husband, several times the thought of us living together crossed our minds. He usually was the one asking me whether I’d consider living with him. I had my reservations, because I didn’t know I’d be able to cope when he’d be at college or later at work. Also, I didn’t want him to take on a carer role, as we’re supposed to be husband and wife not carer and patient.

I still believe my husband isn’t my carer, but he keeps telling me that even though he does more for me practically than I do for him, what I give him in love amounts to the same. Since I moved to the small town institution in 2013 and my husband had moved to the next town in late 2012, we’ve been closer together than ever before.

There have been a few reasons why I started considering moving in with my husband again late last year. First is my difficult relationship with the nursing staff at my current unit, so that I ended up calling my husband when in a crisis situation rather than enlisting the staff’s help anyway. The staff have on at least one occasion refused to come out to help me when I had run off the ward in a crisis state, and my husband had to come to collect me and get me back to the ward. Of course, this isn’t his job, but when the staff don’t do theirs, someone’s got to do it.

Secondly, it’s become increasingly hard for me to function in a group setting with increasingly little staff support and more severely ill fellow patients. I do know I cause trouble to the other patients too, so this is in no way meant to insult them. I just didn’t choose to live with them, and I do choose my husband to be my husband and hopefully can choose to live with him. Of course, after all, amidst all the practicalities, I love my husband and would very much like to be with him most of the time.

So I called my social worker in December to schedule an appointment to discuss the possibilities of me getting home support while living with my husband. The laws changed significantly at the start of this year, so I had some worries. The appointment was yesterday.

First, one of the main things that absolutely need to be in place for me to live with my husband is an out-of-hours support service that I can call when in an emergency when my husband is at work. They will need to be able to send a support worker to my home should I need in-home support. The area supported housing organization for the mentally ill provides these services, but probably not in my husband’s town. My social worker will look into this.

Additional needs are some day activities for me and possibly a bit of scheduled home support for establishing a daily structure. Thankfully, we won’t need housekeeping, as most local governments have cut out funding for that unless you’re extremely poor.

I told my husband about the social worker’s answers to my questions, which weren’t particularly concrete yet as she’s got to ask the government about what they’ll fund and search around for a suitable support agency. My husband was totally cool, as he said he’s willing to relocate should the right services not be available in his current town. He doesn’t particularly like his town anyway, but I suggested moving to this area because of what I thought were good services. Maybe I was wrong on that.

I am trying to be optimistic that I will be able to live with my husband sometime in the not too distant future. I’ll keep hoping for a positive outcome!

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Christmas 2014

It’s Christmas time 2014. Merry Christmas! I hope you all are having a great day. I really would like to look back on the year today, but I’m having an extremely hard time thinking up things to write about. Therefore, I’m sharing just some thoughts on my Christmas.

I was lucky that the day activity room was open all week except today and tomorrow. If I have to say one thing about this past year anyway, it’s that it’s been a creative one. So was this week. I made some nice cards and some polymer clay animal figures. NO pics yet as I haven’t scanned the cards and haven’t seen my husband yet since making the polymer clay figures. Besides, he may not yet have found his camera.

I went to church yesterday night. A catholic pastor was preaching and my beliefs lean towards protestantism, but it wasn’t a problem. I like that everyone in my institution who follows Jesus, or even who finds his message inspriing, can come to church. There was a great gospel choir too. I didn’t have money to buy their CD or I would have. In the sermon, the preacher talked about both our personal lives as patients or families of patients in the institution, and about the bigger world news. Of course, the MH17 disaster was mentioned. I did find it a little frustrating that I couldn’t remember the words to any of the songs we sang, even though they were well-known for being sung at Christmas and I recognized most.

There was another church service this morning which I’d planned on going to, but I was too tired. Instead, I spent much time in bed or sitting in the front room drinking coffee and eating Christmassy snacks. I didn’t end up going to my in-laws today. Instead, I’ll be visiting them tomorrow. We had a pretty good institution supper for a ready-made meal. In fact, one of the nurses oven-baked the potatoes.

I’m having a little difficulty with the lack of ordinary structure these two days (today and tomorrow). Thankfully it’s only two days and then next week Thursday which is new year’s. The staff will be making snacks for a few days prior to new year’s because they sell them for extra money for the ward. I don’t like the crowdiness it brings on but I can go to the day activity room then at least.

Was My Hospitalization Inevitable?

I was reminded yesterday about the situation surrounding my psychiatric hospitalization in 2007. I had been put on antipsychotic medication three months prior and had quit taking it again three weeks before I ended in crisis and was hospitalized. Yesterday, when talking to my therapist about this situation, she suggested more or less that being hospitalized could’ve been avoided if I just continued taking my meds.

Really, I consider my crisis inevitable. When I was still taking my medication, I was very irritable; just not irritable enough for the crisis team to intervene and hospitalize me. “But other people don’t like to be hospitalized,” my therapist said, as if by quitting my medication I’d somehow manipulated the crisis team into an unnecessary admission. The thing is, I’d been on the edge of a crisis ever since I moved into independent living. Maybe quitting my medication was the final straw, but is it all that strange that you want help when you’re struggling with meltdown after meltdown after meltdown?

I saw this reasoning all along when I still lived independently. I remember my care coordinator once saying that it was better for me to bang my head against the walls of my apartment, than to go outside and scream. Well, what the bleep? Isn’t a person’s safety more important than the person being a pain in the butt? Besides, it isn’t like I made a conscious choice either way.

For clarity’s sake: hospitalizations aren’t fun. The psychiatrist who admitted me, didn’t do so to please me. In fact, I didn’t ask to be hospitalized, as I didn’t know what I needed really. Hospitalizations happen as a last resort. Long-term institutionalizations are certainly not a choice either. And just so you know, the fact that I’m an informal patient doesn’t change that.

Why did I have a full-blown meltdown yesterday after my therapist asked me to name the pros and cons of asking for help less? Why did I feel offended when she suggested that, with medication, I could’ve been kept at home? Why do I struggle with all this “least restrictive environment” bullcrap that I hear everywhere? I’d like to consider my hospitalization avoidable, and maybe it was if I’d just continued taking those pills. But as I said, I was completely on the edge for all those three months. Apparently, however, intervention is only inevitable if you’re literally (nearly) dead, and if you aren’t, quality of life doesn’t matter. Especially not if you’re also a pain in the neck.

mumturnedmom

Long-Term (S)care Planning

Next year, my institution is going to undergo restructuring and all people with the lower levels of care will be kicked out. Lower levels of care in terms of institutional care, that is, so my level five (out of seven) care package does count. Exceptions are being made for those who’ve been completely institutionalized, so that they can’t live in the community, but that doesn’t include me having spent “only” seven years in an institution.

Honestly, I’m worried, but also determined. I was actually going to be referred to the Leo Kanner House workhome. The Leo Kanner House is an agency for autistic children and adults, specifically those without an intellectual disability. The workhome is their institutional, long-term placement for the more severely disabled adults, but firstly they have a waiting list a mile long (or two miles, or three), and secndly, my care package will likely by the time they have a place for me, not qualify me for care there anymore. Five out of seven sounded heavy duty when I first was assigned this care package in 2009, because I got there from three and that was already called something about “intensive support”. Currently, those with any care package below five are expected to live independently with outpatient and home supports. Fine with me, and I would’ve loved to attain this level of independence, but it’s not like the people in these care packages get the additional care that living on yur own requires versus living in a group home or institution.

As far as I’m aware, the people in care package five are allowed 24-hour care until the Long-Trm Care Act passes, which is only God knows when. 24-hour care, for clarity’s sake, means having someone available on call or at best in the group home or on the ward 24/7. There’s absolutely no-one who is allowed 24-hour supervision under the Dutch care system. Anyway, assuming that I’m entitled to group home care until whenever, but will be kicked out of the institution next year, I decided to E-mail my therapist to discuss referring me to supported housing.

There are two supported housing agencies in the area that cater to psychiatric patients – and autistics without an intellectual disability fall under the mental health system here. One of the agencies is a larger one which has existed for several decades. On their page about autism care, they only advertise a training home where autistics are trained to live independentlly and have to move out within a year. Not suitable for me, as 1. I already got enough training home experience to know I’m not going to learn much there, and 2. there’s no way I’m going to learn to live with only home supports in a year’s time, if ever. My husband and I are going to E-mail them anyway as, being a larger organization, they might be able to provide some kind of accommodation where we can live together with enough support for me.

The other organization is smaller, having only about six or seven group homes throughout the province, though mostly in my area. They have an autism-specialized group home in the nearest big city, in which they work together with the Leo Kanner House, but there are two drawbacks. Firstly, this group home is located down town, which means I won’t be able to travel safely even for just a walk around the block. The second drawback is that it is part training home too. Then there are two group homes in the countryside near a neighboring town from here. It is one of these group homes I’m asking ot go on the list for if I pass the intake interview. I will be calling this organization tomorrow after I speak to my therapist. Not sure how or when I’ll be contacting the larger supported housing agency.

One of the positives about moving into a group home is that my therapy falls under a different insurance scheme then. Under care packages for those in institutions, you’re only entitled to 50 minutes of “treatment” a week. That’s normal, you’d say. The thing is, “treatment” includes not only psychotherapy, but also art therapy, social work, consultations with a psychiatrist, etc. Basically anything other than staff support and day activities. Based on this, I get psychotherapy only once every other week at best (even though until recently I had no other forms of treatment, but oh well). Under group home care packaging, support will still be covered, but treatment isn’t covered. You’ll have to get that paid for through health insurance. That means, if I’m correct, that you can get more treatment paid for if your diagnosis warrants it, which mine does if I have to believe my therapist, who says that people with borderline personality disorder normally get at least a session a week. (Day activities are from 2015 on covered through the local government to make things complicated, so I have no clue how m uch I can get of those.)

I also asked my therapist to contact the Leo Kanner House about doing a consultation there. In all honesty, I’d like to get therapy there (they offer psychotherapy too) rather than at my local mental health agency, but as far as I know, getting both agencies involved is also possible if you have a dual diagnosis. As I wrote a few weeks ago, however, my diagnosis of autism is being questioned, so I’m asking my therapist to call my old institution to request my old records, too. I don’t mind having to answer a zillion questions about my autism for only about the fourth time (yay, I can do sarcasm, does that make me NT?). What I do mind is having to get my parents to come over again, for the third time in their case, to do the developmental assessment. Oh wait, what if my childhood development has changed since 2007? My therapist had better get the records, and she’ll hopefully straighten up about my blindness, as the Leo Kanner House had a blind client several years ago.

June 16, 2002: Becoming Aware of My Autism

Good Friday has a special place in the mind of Brielle’s Mom, blogger at Brielle and Me, because it was the day she first became aware that something wasn’t normal about Brielle. I do not know when my parents became aware of my blindness, or whether there was a specific event that caused them to worry. I do know they, like Brielle’s parents, knew I was at risk, because they kept warning the NICU nurses not to turn up the oxygen.

With regard to my other disabilities, my parents knew about them for years before I was diagnosed. Like, when I was first diagnosed with autis, my parents told the doctor that they’d suspected it since I was two-years-old. That was eighteen years ago at the time.

I do not remeber becoming aware of my blindness at a specific moment, but with the autism, there is a specific moment which caused me to start to wonder. It was June 16, 2002, 3:50 AM. I was in my rooom, the volume of my CD player turned up, writing in my journal. On June 17, I was expected to disclose a very personal struggle of mine to my high school tutor. I had not been able to speak out of anxiety the previous Friday, and he had me come in on MOnday to write down what was going on, what caused me to fail five subjects in ninth grade because of mostly lack of effort. The reason I struggled was my becoming increasingly aware of the fact that I was never going to be seen as “normal”, and that I had to compensate for my blindness in some way. I also started becoming aware of my alters that year, but I didn’t disclose this to my tutor that Monday, or ever until several years later when he read my online journal.

Back to Sunday June 16. My father came into my room shouting. I don’t know until now, and never knew, what made his angry: the loud music, the fact that I was still awake, or what. “Are you autistic or somehting?!” he shouted. I knew better than I know now why he was saying that I was autistic, believing at the time that antisocial behavior like turning up the music in the middle of the night, is typically autistic. It wasn’t the first tiem or the last that my parents labeled me autistic or any number of other neurodiverse conditions or mental illnesses. It was the one time that the message got through. Not that I shouldn’t be up late or play loud music, but that something wasn’t normal about me. I suspect neurotypical teens sometimes play loud music at night too, so in this sense I do not know what made the comment get through to me this time. There were far more typcal signs that my parents commented on: my stimming, my meltdowns my social withdrawal and bizarre behaviors, etc. But this time, I believed my father.

I was obsessed with autism for the next nearly two years, until again it was my father who pulled me out of it. I didn’t want anything to do with autism for the next two and a half years, until my staff at the independence training home decided I needed an evaluation. I was given the diagnosis of autism on March 16, 2007.

If you have a disability, is there any specific event that made you aware of it? If you have a special needs child, when did you first realize they weren’t developing typically?

When I Shouldn’t Reach for My Meds (But I Do)

Today, I had a discussion with my psychiatrist. I’ve been feeling okay overall, but, when my therapist and social worker got talking to me about going into supported housing, it caused me to be irritable for days. I notice this a lot lately: when I’m able to stay in the present and just do my thing, I’ll still have some mood swings, but they aren’t nearly as severe as when I need to focus on the future. My therapist and I are clearly not on the same page in terms of my goals, and this causes me intense frustration. I’ve reached for my PRN medication almost everyday last week, even though it isn’t effective. At least the though that something would be numbing me and I had some control over my emotions was there.

My psychiatrist pretty much said that situational frustration is not a reason to reach for meds, and he’s right. That’s one of the main reasons I stopped my Risperdal, which had been used to make me just numb enough not to have a crisis while living independently, but not so numb that I didn’t feel the intense pain anymore. In a way, I want nothing to do with my increased dose of Abilify either. It wasn’t increased now, but it’s been increased twice since I came here seven months ago, while I’d been stable at a moderate dose for three years before I cam here. Medication isn’t a cure for shitty circumstances.

Yet I reach for medication everytime I feel frustrated. It’s probably what I’ve been learning to do. I can’t get more support if my therapist doesn’t want me to get it, and it’s still a fact that in psychiatric institutions, patients have little say in their treatment, unless their treatment goals are in line with the latest treatment philosophy. Back when patients had to be locked up for the rest of their lives, people wanting to move into the community, were medicated, secluded and otherwise forced into submission. Now that psychiatric services have to face budget cuts and their philosophy has changed to rehabilition, patients like me, who cannot cope with this pressure, are, albeit more subtly, still forced into submission. Still, the only way to numb the agitation that I feel at people trying to control my life, is to reach for my meds. It isn’t going to get me out of this vicious cycle, but then again, what is?