Tag Archives: Independence

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…”.

Disordered Eating: A Cry for Help

One day when I was probably in seventh grade, I read an audio magazine for blind teens. It was really a mixture of its own content with content from other teen magazines read aloud. One of the articles from another magazine was about an eating disorders unit. I just remembered this as I read a passage in J.J. Johnson’s Believarexic, in which Jennifer remembers learning about anorexia for the first time in fifth grade and wondering how the celebrity who died of it, got as skinny as she did. Later on, Jennifer learns about people being hospitalized for eating disorders. She envies them because of their size but also because of the attention they get.

This hit home with me. Back in seventh grade, I had already firmly embarked on the binge eating boat, but since I was at a healthy weight for my age and height, I didn’t notice my eating had spiraled out of control already. I remember once, probably in the same year, being confronted by my classmates about getting five candy bars out of the vending machine and eating them all in one sitting. However, I just got annoyed and didn’t realize that my classmates may have wanted to protect me from unhealthful choices.

We didn’t learn about binge eating disorder or compulsive overeating in health class. All we learned about eating disorders was about anorexia and bulimia. I even did one of my gifted program projects on these eating disorders. I didn’t tell anyone that, as I was writing the paper, I was trying to figure out how I could become anorexic.

No, I didn’t “want” anorexia, like some teens say they do. No-one consciously decides to develop an eating disorder. But I did want the perseverance that I perceived anorexics had. So I began keeping food diaries. This was before I had access to the Internet and I couldn’t read packaging, so I couldn’t check calories. In truth, as I look back at my food diaries of the time, they show a pretty typical overeater’s pattern. But I wanted to have some control over my food intake by keeping these diaries. Not that it worked, of course. Over the years, my binge eating got worse.

Back to the article about the eating disorders unit. For some reason, I felt compelled to be like these patients. I don’t know whether it was pure attention-seeking. I mean, I got plenty of attention from my parents and teachers. What I might’ve been missing was someone who saw how much I was struggling. Maybe, if I became anorexic, they’d see how miserable I was.

The other day, I had a meeting with my psychologist. She wa spushing me to take steps towards independence in preparation for my move in with my husband. I can’t remember whether she said so, but she gave me the impression that she felt I was doing better because I had much fewer meltdowns and emotional outbursts. In truth, I may be a little better, but I still have a pretty miserable life and feel pretty crap. Instead of becoming self-destructive or aggressive, I lie in bed or resort to overeating. A fair quality of life is not just not being a pain in the neck, but also being able to experience pleasure every once in a while. It isn’t that I never do, but it’s quite rare that I do things that bring me any sort of satisfaction. For example, I don’t craft nearly as much as I used to, because I can’t handle the noise and crowdedness at day activities.

I was also telling my psychologist that I’m completely dependent on my treatment team. What I meant was close to the exact opposite: I have no control over what goals are set for me, but it is my sole responsibility to reach them.

In a sense, maybe this whole disordered eating thing is a way of showing peope I need help. It sounds so pathetic though: someone who’s nearly thirty-years-old needing to be taken care of like a little child. IN truth though, often I feel that vulnerable.

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

Mental Health Goal: Move In with My Husband #Write31Days

31 Days of Mental Health

Welcome to day 26 in the #Write31Days challenge on mental health. Today, my husband and I accepted the house to the right side of Arnhem we were offered on Thursday. I am therefore cheating a bit with the 30-day mental illness awareness challenge and choosing the question from day 29. Actually, it isn’t cheating at all since I never followed the challenge to a T. Anyway, for day 29, the question is about some of your goals with regard to your mental health.

My main goal that I’ve been working on for the past nine months now is to eventually be able to move in with my husband. Since we’re moving to the right side of Arnhem in probably less than a month, you may think there’ll be a bit of a delay in finding me care, but things never went that fast anyway. I hadn’t had an intake interview with supported housing on this side yet. Neither had a definite decision about allocated care hours been made. Remember, we’ve been working on this goal for nine months. Things go that slowly.

One factor in this slow-going process was the fact that my treatment team and I were waiting for the consultation with the autism center we didn’t have till the middle of May. Looking back, there’s not a single thing this center has been helpful with. Another factor, however, was the fact that my husband and I had been planning on moving for months. Even though my psychologist said she’d make arrangements as if we weren’t going to move, I at least have a bit of hope (or illusion) that now that the elephant is out of the room, we can actually start making arrangements for my care.

Apart from preparing for living with my husband, I don’t have any real goals for my mental health treatment right now. However, living with my husband requires a greater level of emotional self-control than living in an institution with 24-hour care. My husband works irregular hours and may be working long days. I won’t have support available when I need it right then during my husband’s work hours. If a support worker will be able to come out to the tiny village on call at all, it’ll take at least fifteen minutes if they can leave right away. Fortunately, I am relatively good now at spending time without care if I know at what times I’ll be abe to enlist a support worker or my husband will be home. I still need to work on improving this ability, because my husband cannot always tell when he’ll be home.

When I do live with my husband, additional goals for my mental health will have to do with other aspects of emotion regulation. I want to finally learn to kick the binge eating beast, for example. There are undoubteldy other negative coping skills I need to learn to replace, but I can’t think of them right now. In short, I hope to eventually be able to participate in day activities and live with my husband without too much emotional turmoil or behavioral outbursts.

Autistic Adults and Independence

I skipped a day of the September blog challenge because I was at my parents’. I had a good time. Today I came down with a cold, so am not really in the mood for writing, but I’ve got to keep up with the blog anyway. Besides, I just have to write my own spin on autism and independence, which Pam Byrne wrote an interesting post on.

Pam is the mother of an autistic adult with signifcant care needs. Though I am probably more capable in some ways than Pam’s son Alex, I am an autistic adult with significant care needs. I used to also be an autistic advocate, fighting for the rights to proper care and services for autistic adults. I always said autistics should be allowed to live and work in the community. It took myself being institutionalized to learn that society isn’t prepared for that. Of course, we should fight to get society prepared, but not every autistic person or parent of an autistic person has the resources and time and energy to do so. I bet most do not.

I remember back in 2010 or 2011 reading some research that said most autistic people attain a relatively normal level of independence, but do so around ten years later than most neurotypical people. I do not remember whether the research included autistics with co-existing intellectual disability or other additional needs. Even if it did, there still will be a significant number of autistic adults who do not reach expected levels of independence. For example, as Pam also says, the unemployment rate among autistics is about 70 to 80 percent. You could again put this down to discrimination. I won’t. After all, even the most willing employer could not employ me.

Maybe if I’d gotten early autism intervention, I would’ve been more independent than I am now. Maybe. Maybe not. Maybe it wouldn’t have made a significant difference, because my biggest problem is not a lack of practical skills. It is the fact that it’s not safe for me to be without access to support.

Of course, we need to teach autistic children and adults the skills to become the best they they can be. However, there are some skills some autistic people will just not learn. We could advocate for more applied behavior analysis training for older children and even adults with autism. I won’t. I don’t have the energy to go into all the things that are worng with ABA. Let me just say that I for one am completely overwhelmed with intensive skills training. Instead, we need enough supports to make sure autistic people can live a fulfilling, satisfying life.

Everyday Gyaan

Transitions: Moving Out of Student Housing

One of today’s prompts for Friday Reflections is about moving out of your last home. I have not truly lived in a home since being institutionalized nearly eight years ago. Before then, I lived on my own for three months in a student housing apartment. For this post, I am going to write about moving out of that home.

I was admitted to the psychiatric hospital suddenly in the middle of the night on NOvember 3, 2007. I also couldn’t be sure then that I would never return to the student housing apartment, although the psychiatrist admitting me did say so more or less. The apartment, like I said, was from student housing. This meant you needed to be in college in that city to be allowed to live there. I formally quit college three months into my stay at the psychiatric unit, but persuaded the student housing corporation to let me keep the apartment for a while, then was never given an eviction notice. I held on to the apartment until I could no longer afford it, which came when my long-term care copay was increased in May of 2010.

I was by now relatively stable and had moved from the acute unit to the resocialization unit. I was sure however that I’d not return to this home. I formally left the student housing accommodation on May 3, 2010. It wasn’t a coincidence that this was exactly 2 1/2 years after my admission to the hospital, as long-term care copay started at one year in a facility, you pay the low copay for another year and my social worker applied for an extra six months of the low copay for “resocialization into the community”.

Interestingly, I don’t remember much about letting go of my student housing apartment. I remember the packing. Because we packed rather inefficiently, some boxes were over 10kg and others were just five. I sent them to my parents, so this matters, because you pay extra for sending boxes over 10kg. I remember the argument with my parents (and especially my sister) because I wanted to get rid of my old keyboards that I’d gotten from my grandma. I also remember getting a friend of a nurse to take the stuff I no longer wanted to the garbage collection place. (I can’t believe I trusted that man, whom I had never met, in my home even with the nurse accompanying him.) I didn’t want my husband (who was still my boyfriend then) to help me much, so he did some packing and lots of cleaning. We probably left the apartment cleaner than I’d gotten into it.

Moving out was a bit emotional of course, because it meant, or so I thought, letting go of the idea of living independently. Roughly at the same time that I handed in the keys to my student housing apartment, I handed my parents my key to their old home, which they were selling. This signified my letting go of the home in which I’d grown up. It also signified my letting go of the idea that my parents would always be there for me. Not that they were. After all, since I’d moved into the student housing apartment and especially since I’d been institutionalized, they felt I had now grown up and should take care of myself. I almost said it signified that my parents were no longer the most important people in my life. This is true in a way, because a month after this, my boyfriend proposed to me.

In many ways, moving out of student housing was bittersweet. It was freeing, because it helped me let go of the requirement that I be in full-time college. It also in some ways made me sad, having to let go of the hope of being in full-time college again. The same goes, to a lesser degree now, for living independently. Of course, I plan to go live with my husband, but I didn’t know this back then. Moving out helped me let go of the requirement of living independently, but it also sort of crushed the hope of my living independently again, at least until my husband and I got our current apartment.

As you can see, my moving out of student housing was in many ways a transitional point in my life. It helped me make the transition from daughter to girlfriend and eventually wife, but more so it helped me become my own, independent self. This seems a bit paradoxical, but what I mean is, I no longer held my parents respnsible for making my decisions, and I didn’t hold my boyfriend responsible for making my decisions either. At least not yet. Unfortunately, now that I’m married, I have fallen a bit for the habit of holding my husband responsible for my decisions. I don’t believe in the submissive wife type of bullcrap, so I need to let go of this habit.

Reflections From Me
Everyday Gyaan

All the Light I Cannot See: Adjusting with Blindness

This month, it’s two years ago that I had my last eye surgery, an attempt at removing a cataract from myleft eye. It was hoped that I’d see a little again – before then, I only had a tiny bit of light perception. Though the surgery was a partial technical success, I gained only very minimal functional improvement. I am still classified as having light perception only.

The adjustment process to my blindness is ongoing. I remember ten years ago when I was at the blindness rehabilitation center, my psychologist, herself blind from birth, telling me I just had to accept the fact that I am blind. I didn’t see myself as low vision anymore – hadn’t fo ryears -, but I still had trouble accepting the fact that i’m essentially completely funcitonally blind.

For those who are coming here from a linky and don’t know my story, I was born three months prematurely in 1986 and developed an eye condition common in preemies. It left me legally blind all my life, but until I was around eight, I had considerable vision that I used everyday. I had some vision beyond light perception until I was seventeen.

Even though I’ve been (almost) totally blind for over ten years now, it’s still hard to accept. I don’t miss the loss of independence as much, as I was never all that independent to begin with. Also, though I lost some independence over the years, it’s more to do with my increasing executive dysfunction than with my blindness. What I miss most, is the loss of appreciation. For example, when I craft, I can no longer see what colors I’m using.

I don’t know for sure that I ever had the abilities that I wish I had. For example, it frustrates me that I cannot add pictures to my blog posts without help, because the requirement of having an image go with every blog post is one of the most 101’ish lessons in blogging. Blogs didn’t exist when I still had considerable vision, so I cannot be sure I was ever able to work pics in blog posts. I do appreciate the help kindly offered to me by some fellow bloggers in checking images for me to make sure they go well with my posts. It is a nuisance though having to constantly ask for help. In this sense, I cannot say I miss the loss of independence, but rather the lack thereof.

Sometimes, I wish I were partially sighted again, even though I cannot even know what I’d be able to do that I cannot now with low vision. After all, like I said, blogs didn’t exist back then and I didn’t do many crafts. IN this sense, I wonder whether I truly wish for myself to be the old, partially sighted me, or for myself to be able to compete on equal footing with sighted people.

This post was inspired by the one-word blog challenge. The choices of words for this week were “shame” and “light”.

Everyday Gyaan

First Steps Towards Independence: Blindness Rehabilitation in 2005

This week on the spin cycle, we’re discussing firsts. Last Friday, I visited a woman I first met at the blindness rehabilitation center in 2005. Another guy we both met there too also came over. This was my first time meeting them since I graduated from the rehabilitation center.

The rehabilitation center experience was quite interesting. I had just graduated from high school two months earlier and didn’t want to go straight to university. So in order to have some practice on my first steps towards independence, I became a resident there four to five days a week for four months.

The program was quite intensive. I had orientation and mobility training, occupational therapy, physical therapy, music, textile arts and handycrafts, as well as three different types of communication training and counseling with a psychologist. I also had vision therapy.

During orientation and mobility training, I learned to plan to go someplace and to travel there effectively using my white cane. I learned to be quite a good cane traveler even though I’d always had trouble using the cane correclty, and still do. After about six weeks at the center, I started using public transportation to go there on Monday and to travel back home on Thursday or Friday. I also learned to travel to and from the local supermarket and to use customer service to get my groceries.

Occupational therapy had several components to it. First, there was the teaching of housekeeping and cooking skills. I didn’t yet master these when I graduated from the center, so went on to live at an independence training home afterwards. Another part of occupational therapy was group-based training in compensating for our visual impairment with our other senses. This, for me, was quite easy in the practical sense, but my social skils difficulties emerged there. There was one great workshop on applying make-up without sight. I loved it.

I also had physical therapy because I have poor posture and had developed mild scoliosis as a result. Physical therapy wasn’t all that effective, because I didn’t practise the exercises out of session.

Vision therapy was very interesting. At first, I had a vision therapist who didn’t acknowledge my admittedly tiny fraction of residual vision. When at one of the communication sills training sessions though, another vision therapist joined the trainer and I arranged for sessions with her. My vision was still virtually non-existent, but I learned a lot about what I could and couldn’t do with it. I also had an opportunity to select NoIR sunglasses that would help me cope better with my light sensitivity. This vision therapist was very patient and thorough in answering my questions. Though in the end my emotional adjustment problems surfaced, which of course she wasn’t trained in dealing with, I did feel very much validated.

Music, textile arts and handycrafts were quite useful too. Though I didn’t practise what I learned there for another few years to come, the instructors there taught me that I could indeed do arts and crafts with no vision. Music wasn’t my cup of tea, so I stopped playing the keyboards after graduating from the center.

The communication skills training sessions were great. I took basic communication skills, assertiveness and communication about your visual impairment. I had one trainer for both basic communication skills and assertiveness and another for the communication about your visual impairment training. The first one was great at letting me see that, if I moved past my anxiety, I could be quite sociable. The second trainer was the one who cooperated with the vision therapist.

Counseling was the least useful bit about the rehabilitation program. The psychologist was blind herself and for one thing didn’t grasp my emotional adjustment issues. She focused on the fact that I had to put non-disabled values into perspective and for example learn to ask for help. Though I did accept this eventually, I still couldn’t cope with the many losses of vision loss. I don’t think a four-month-long rehabilitation program is enough for that anyway, as I still don’t fully accept this ten years on. However, the other problem was we just didn’t click in terms of communication styles. I didn’t open up easily and there just wasn’t enough time in the program for me to work on even just those issues that are due to blindness. I understand that, but the psychologist could’ve refrained from rushing me through a dozen issues.

I was a residential client there even though the rehabilitation center was in my home city. In the evenings, the clients spent lots of time amongst ourselves discussing our rehabilitation process. This was very healing to me. It also was a great opportunity to practise social skills.

Even though my rehabilitation was supposed to be my first step towards independence, I was in many ways at my highest point in terms of independence while there. I don’t like to admit this, since I did learn other sklls in the ten years since. Also, the fact that I didn’t become more self-reliant makes it look like I just need a kick in the pants. In fact, however, the program had lots of one-on-one instruction incorporated, which I can’t get now that I’m a mental patient. I still grieve this loss of independence, but this possibly has to do with my adjustment to my psychiatric illness.

Intelligence and Autism #AtoZChallenge

Welcome to another day of the A to Z Challenge on autism. Today, I will discuss autism and intelligence.

First, what is intelligence? Intelligence is generally defined as a person’s overall cognitive ability across a number of domains, such as verbal comprheension, perceptual reasoning, working memory, etc., as measured by standardized IQ tets. Examples of IQ tests include the Stanford-Binet test used mostly in the U.S. and the Wechsler scales used more in Europe.

An average IQ score is 100. IQ follows the bell curve by which, the further a score deviates from average, the fewer people have this score. The standard deviation used on IQ tests is 15 on the Wechsler scales. This means that an IQ of 70, which is defined as the cut-off for intellectual disability, is two standard deviations below the norm. Approximately 2% of the population have an IQ below 70.

On IQ tests, the score is usually divided in a verbal commmponent and a non-verbal or performance component. Autistic people commonly have a gap between their verbal and non-verbal intelligence quotient. Some non-verbal autistic people show a dramatic increase in their IQ scores once they learn to type. Other people, usually diagnosed with Asperger’s Syndrome, have a high verbal IQ but a lower or even below-average non-verbal IQ.

It used to be thought that autistic people usually had a low IQ or intellectual disability. Current estimates are that approximately 40% of children with autism spectrumd isorder also have an intellectual disability. Children diagnosed with Asperger’s Syndrome by definition do not have an IQ below 70. However, some people with Asperger’s score as borderline intellectual functioning (IQ between 70 and 85) and may benefit from services for people with an intellectual disability.

IQ may be a predictor of how capable a person will be of becoming independent. However, other factors play a role too, such as adaptive functioning. Young children with Asperger’s usually do not have problems with self-help skills or adaptive funcitoning (other than that required for social interaction). However, as children mature, more problems with adaptive functioning in general may arise. I unfortunately have never had an assessment of adaptive functioning, so I don’t know how I’d score. However, people are usually surprised at my ability to use the computer but not, for example, cut up my own food or take proper care of my personal hygiene without prompting.