Tag Archives: Dependence

Day Activities: Why Do I Seem to Have High Support Needs?

Yesterday, I had a meeting with my day activities and home support staff, my comunity psychiatric nurse (CPN) and the social consultant (local authority person who decides on care funding) in charge of my case. My mother-in-law also attended. The reason for the meeting was my trouble functioning at day activities.

I go to a day center for people with intellectual disabilities and attend a group within the center for people with severe intellectual and multiple disabilities. I don’t have an intellectual disability, but did seem to do best at this sensory-based group up until recently. Then, three new service users joined us, leading to increasing stimulation, stress and staff workloads. I was increasingly overloaded and irritable, which led to the staff cutting my hours because they couldn’t deal with me on top of the other high-support service users for a full day.

The problem is there’s no clear-cut diagnosis to back up why I function best at a low-stress, sensory-based, high-support group. I mean, yeah, I’m blind, but most people who are blind can work regular jobs. Yeah, I’m autistic, but only diagnosed with autism spectrum disorder level 1 (ie. “high-functioning” autism or Asperger’s Syndrome). Yeah, I have mild motor impairments, but my doctor doesn’t know or can’t tell me to what extent they’re diagnosable (as mild cerebral palsy or something else). Yeah, I have mental health issues, but no-one has a clue to what extent these affect me and what they’re even diagnosable as.

As a result, some professionals and non-professionals choose to deny I have high support needs and tell me it’s all dependence, manipulation or attention-seeking. I was lucky that, with one of these professionals being my former psychologist who got me in touch with my current day center, the day center staff and management were up until recently more than willing to accomodate me. For instance, I started day activities at the industrial group at this center, but was soon moved to the sensory group despite, like I said, not even having an intellectual disability, let alone a severe one.

Now that I’m even falling apart at this group, I hear different opinions on where to go from here. At one point, my home support coordinator said maybe the gap between myself and the other service users at the sensory group is too wide, so we need to look at a different kind of place, like a sheltered art shop. I disagreed and not just because my art-making skills are mediocre at best. At more “job-like” day activities places like this, there’s usually more pressure and less support. My day activities staff agreed, adding that I’d tried the industrial group already.

My CPN’s coworker suggested a care farm. As much as I love animals, I know I won’t even be able to navigate a farm without a sighted guide, let alone care for the animals without one-on-one. My mother suggested I look for day activities tailored to the blind. These don’t exist in my area. Besides, I could barely function at the leisure groups at the blindess training center I attended in 2005. My mother said I may be able to now, but I think it unlikely. These places expect a level of independence I don’t have. I mean, I’ve seen my partially sighted friend make soap completely independently after being instructed by me just once, while I still need practically hands-on support after many attempts.

I’m on the verge of crying as I write this. I completed grammar school, for goodness’ sake! Granted, I burned out the minute I left, but I did it nonetheless. Why can’t I even function at a group where people with profound intellectual disabilities can? Or am I really one giant dependent, manipulative, attention-seeking waste of resources?

My CPN is going to contact the Center for Consultation an dExpertise on me. In 2010, they were briefly involved in my case. The consultant wrote in her report that she thinks it’s weird that I’m so cognitively capable and yet cannot do simple activities of daily living such as prpearing my own breakfast. She also wrote something in the report about not knowing whether I’m eliciting care. In other words, she couldn’t say whether or not I’m just one giant dependent, manipulative, attention-seeking waste of resources either. Sigh.

In Between: Walking the Disability Line

This week, the prompt from mumturnedmom is “in between”. I immediately thought of my life as a disabled person. For many years, I’ve thought of it metaphorically as me walking a line between being good enough to be included in the non-disabled world and bad enough to deserve care.

I am multiply-disabled. I reside in an institution with 24-hour care. I am not even in the lowest care category for institutionalized people now that we’ve faced massive budget cuts and the lower care categories got deinstitutionalized.

Yet I am intellectually capable. I am stable enough not to need to be on a locked unit, and in fact am going to leave the institution in a few months. I will then fall in a lower care category, be entitled to less care. Yet I will be able to live a more normal life with my husband.

People often automatically assume that, if you have certain abilities, you are automatically less disabled than if you don’t have these abilities. For instance, I am always seen as “high-functioning” autistic because of my IQ. This is despite the fact that I’m in a similar care category to someone with an intellectual disability who has fewer behavioral challenges, sensory issues, or is more capable in daily living tasks than me.

People also often automatically assume that deinstitutionalization is appropriate only for those with few care needs, those who are “high-functioning” if you will. People don’t take into account that institutional life requires consumers to live in a group setting, which may not be possible for some.

I struggle with this view of disability as a continuum at best and a dichotomy at worst. It makes me walk the line between “high-functioning” and “low-functioning”, when in truth, I’m neither and I’m both and I’m in between.

I am “high-functioning” because of my IQ and my language skills. I am “low-functioning” because of my poor daily living skills. In most ways, however, I’m neither and I’m both and I’m in between depending on circumstances both within myself and in the environment. Yet I’m forced to choose.

And I refuse to choose. I want to be accepted as a human being with her own set of capabilities and difficulties. I refuse to choose between being “high-functioning” and being “low-functioning”, between being dependent and independent. After all, I am interdependent, like veryone else.

mumturnedmom

Fear of Demands

I admit it, I have a fear of demands. I originally wrote that I have a fear of independence. In fact, I thought for a while that I may have dependent personality disorder. People with DPD have a pathological need to be taken care of. They can’t make everyday decisions without a lot of counsel, need others to take full responsibility for the bigger decisions in their life, and may even stay in abusive relationships out of fear of losing someone to take care of them. They appear incredibly easy on therapists at first, agreeing with their every counsel. On a deper level though, this is just a way of maintaining the care relationship.

I still believe I have some traits of DPD, but this last bit is where I realized dependence may not be the core of things. I am not easy on a therapist at all. In fact, I remember being seen as very defiant when I was on a locked unit in 2007 and 2008.

I do have a fear of practical independence, I admit. Then again, it’s more a fear of other people taking contorl over what I can and can’t do practically. I’d love in fact to have full control over deciding what I can and can’t do independently. My fear is not of doing things independently myself, but of other people deciding I can do them independently.

This is where pathological demand avoidance enters the picture. PDA is a conditon along the autism spectrum in which people have a persistent anxiety of direct demands placed on them. They often appear defiant, but underneath this is a deep fear. It could be fear of failure in some ways, but it’s more.

There is an interesting aspect to my fear of doing things independently, and that’s that I can do them fine when no-one’s watching me. Also, when I take the initiative to do things independently I can do them much better than when others tell me to do them. I remember E-mailing around for a therapist to treat my dissociation in 2012 and I had no problem doing it. (I stll had anxiety about it, of course, but that’s more fear of the response.) I called the social consultant and client advocacy organization last week and was fine. On the other hand, when someone asks me to make a phone call or E-mal someone, it’s much harder for me. I also took the initiative to go live with my husband. Then, when my staff took away my control over it and demanded I show certain capabilities if I wanted to live with him, I backed away.

Unfortunately, the care system is built on the premise that psychiatric patients just need a little pushing to do things independently. Despite the rehabilitation and recovery models, which I applaud, people are only allowed to take control if they’ve shown their competence first. I cannot do this. It scares the crap out of me. I want recovery without having to prove myself. Hopefully, I’ll be able to accomplish this when I live with my husband.

Linking up with Finish the Sentence Friday. A little late, i know. The prompt sentence was: “One of the biggest fears that I’ve ever had to face…”.

D – #AtoZChallenge on Mental Health

Welcome to my letter D post in the #AtoZChallenge on mental health. Today, I have quite a few words to share with you again.

Danger

In the Dutch mental health act, people can be involuntarly committed to a mental hospital if they’re a danger to themselves or others. Danger can refer to many things, including self-harm or aggression, but also to “social disintegration” or “eliciting other people’s aggression with one’s behavior”. In other words, if you’re plain irritating, you’re a “danger” to yourself.

Dependence

With the current rehabilitation model of psychiatric care, we’re not supposed to become dependent anymore. That is, we can clean our rooms and do other household chores, but often only when told to. I have often experienced the same sense of dependence no matter whether practical independence was encouraged or not.

Depression

One of the more common mental illnesses within the general population. It is not as common among long-term mental hospital inpatients, although some will claim they feel “depressed”. That usually refers to minor, everday depression. I was once screened for depression because a mental nurse insisted I get screened after teling him how low I felt. Being borderline, I often feel slightly depressed but my emotions also shift rapidly.

Diagnosis

What the mental health professionals say is wrong with you. You need a primary diagnosis, which dictates practically everything about your treatment. If you happen to have more than one mental disorder, too bad.

Discharge

When you’re let out of the mental hospital or, in outpatient treatment, when treatment is discontinued. Discharge is usually a mutual agreement between the patient and their treatment provider. An exception is involuntary commitment, when someone can be discharged when their section runs out. People can also be forcibly discharged if they have improved so much that they no longer need the mental hospital, have broken the hospital rules multiple times, or refuse every treatment offered.

Drugs

This can refer to either the drugs handed out like smarties by mental health professionals or to the street drugs patients get in the hospital parking lot. Seriously, drug dealers wait right outside of a mental hospital and patients with privileges will get their (and other people’s) drugs. Outside of my unit is a billboard that says drug use is prohibited, but I’ve smelled people smoke marijuana and who knows what else right next to the billboard.

Bar of Expectations #MondayMusings

Last week, I was readig the book Believarexic by J.J. johnson. I have not been able to get far into the book, because I got easily triggered. The book is about a girl, Jennifer, probably the author as a teen, who has an eating disorder. She eventually decides to tell her parents and have her Mom call a hospital for help. At the intake interview, Jennifer’s Mom is skeptical that Jennifer really has an eating disorder and isn’t just seeking attention. The psychologist tells them that only time will tell whether Jennifer’s eating disorder is legitimate. Legitimate. As if it were some rite of passage. In the hospital world of course, it is: without a mental illness, you aren’t admitted to a psychiatric unit.

This all reminds me of my own experience being admitted into the psychiatric hospital in 2007. The psychiatrist had to practically make up a diagnosis to get me admitted. That is, she diagnosed me with an adjustment disorder, which is really an extreme, debilitating reaction to stress. It is serious, but it is not a severe mental illness. Basic health insurance in the Netherlands as of 2012 no longer covers care for it. Of course, there are exceptions. I was suicidal, so I probably would still get care under these new insurance guidelines.

The story goes on with Jennifer being admitted to the eating disorders unit. One of the rules of the unit is patients having to resign complete responsibility over their eating habits. That was another trigger. In today’s treatment models, patients are usually required to take a lot of responsibility for themselves. Certainly patients with eating disorders are. So are patients with, well, borderline personality disorder, which is what I’m diagnosed with.

It isn’t that I’d like to resign all my responsibility. In truth, if I could, I’d be completely self-reliant. But I can’t, and I’m stuck in the middle between self-reliance and dependence. This is terribly hard. It means I constantly need to negotiate the right kind of help and the right level of independence and assistance.

Today, as I was on the edge of a meltdown, I told a nurse I’d rather be sent to the locked ward and stay there for the rest of my life. Regardless fo the fact that no-one can just stay on a locked ward without any sort of participation in their treatment being expected of them, I’ve not had good experiences on locked units. I rather meant that I’d finally like to make a choice between being completely self-reliant and responsible and being completely dependent. As I can’t choose complete independence, I’d choose dependence instead.

More so, I don’t want people’s expectations to constantly exceed my abilities so much. Currently, I’m constantly reaching for a bar of expectations that, no matter how high on my toes I stand, I just can’t reach. I’m thinking of jumping to the bar so high I fall flat on my face. Then at least people have to lower the bar.

#MondayMusings

Graduation

In the U.S., May is the month of graduation. In the Netherlnds, high school students are currently in the midst of their final exams, which will determine whether they will graduate or not. I still have nightmares about final exams, even though I graduated grammar school with above-average grades in 2005.

As Ginny Marie points out in her spin cycle prompt for this week, graduations can mean many things. People can graduate from preschool, elementary school, high school or college, but they can also graduate from certain life events or habits. For me, high school graduation marked my graduation from pretending to be normal. Two weeks before the graduation ceremony, with me already having had my final exams, I E-mailed the student counselor to let her know I wasn’t going to Radboud University to study English after all, but was instead going to my country’s blindness rehabilitation center.

The high school graduation ceremony was okay. The principal had planned a lot of pooha about how great my school had been to accept a blind student – I was the first and so far only blind student at this school – and how wonderfully they’d helped me graduate. When I heard of these plans, I was pissed. I argued that I didn’t want to be singled out. This was one reason for my objection. Another was the fact that grammar school had been a bad experience right from the start. In September of 1999, I wrote in my diary that I knew I’d rather graduate a grammar school in six years than a low-level special education high school in four. I don’t know how much of that was truly wanting to, and how much was needing to in order to please my parents.

High school graduation marked my graduation from doing what my parents and teachers wanted me to, which was (or seemed to be) pretending my invisible disabilities didn’t exist. Even though it was my high school tutor who had arranged the initial intake interview at blindness rehab, he half assumed these people could push me to go to college better than he could. In reality, they ended up recommending the basic rehab program. My parents were initially not amused, because the program lasted only four months, but they eventually accepted that I needed to work on myself first before going to university.

Even though I graduated from parent and teacher-pleasing, I didn’t graduate from dependence. Till far into my stay at the acute ward in 2008, I did just do what my social worker or doctor wanted me to. Even though this lessened a bit when I got to the resocialization ward in 2009, I’m now at once at the opposite end of the pendulum, defying my staff constantly, and at once I’m still dependent on them. I ultimately end up doing what they want me to, after all.

Now I know that no-one is truly independent. Then again, parent/child relationships, schools and institutions instill more dependence on the child, student or patient than does ordinary adult life. Next year, it’ll have been ten years since my high school graduation. Will I move towards true interdependence then?