Tag Archives: Expectations

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
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Test Scores Don’t Determine Ability to Get By in Life

On a Dutch blog by the mother of a child with autism, I read about the impact of IQ on school choice. The child in question is intellectually disabled. I am not. However, I can totally relate to measured IQ impacting the choices made for me regarding my education.

I have a verbal IQ that was at one point measured at 154. I have had many IQ tests other than this one. I didn’t score as high on all. On one, I didn’t even score within the gifted range. Nonetheless, my IQ score of 154 is mentioned in every diagnostic report about me.

This is a verbal IQ. IQ is composed of two components: verbal and performance. My perfomrmance, or non-verbal IQ cannot be measured because I’m blind. This doesn’t mean it doesn’t impact me. Professionals involved with autism have consistently suspected that my performance IQ is significantly lower than my verbal IQ and this could be one reason my abilities are constantly overestimated. It cannot be measured, however, so let’s just continue expecting excellent, or at least good performance out of me. Or not.

The mother writing the blog I mentioned above desperately wanted her child to have an IQ above 70 so that he could go to a school for children with behavioral disturbance rather than a school for children with an intellectual disability. In my own case, my parents desperately wanted me to score high so that they could convince the special school for the blind to recommend me to regular education. Finally, they needed not just to prove that I am intellectually capable, but that I excel academically, because they had decided I should go to grammar school. I had to have a standardized test score above a certain number and thankfully I scored within the expected range. The special school principal called my parents in total shock, because she didn’t have a clue that I was this capable.

In real life, unfortunately, it takes more than academic excellence to excel, or even to get by. It takes more even than a high verbal IQ. More than a high IQ in general, in fact.

Why do people rely so heavily on test scores to determine what they can expect out of someone? Because my abilities are consistently overesitmated, the autism consultant recommended further testing to determine why I function at a much lower level than my (verbal) IQ would suggest. My psychologist dismissed this idea. I understand, because it takes a lot to be able to assess someone who is blind. Besides, I’m not so sure I’d be able to take yet another exam, as that’s what it feels like.

Why don’t we just understand that people are different? People have different abilities and difficulties and they shouldn’t all have to be Einsteins or prove why they’re not. Yes, I know Einstein is sometimes suspcted of having had practically every neurodiverse codnition under the sun. I don’t care. My point is that, if someone doesn’t get by, they need help and it doesn’t matter whether a test score says they should be able to get by.

January

The month of January has almost come to a close, and I’m getting used to the year being 2015. I only make the occasional mistake of saying “last year” when I mean 2013 – I just did tonight, but it happens way less than it did in the first days of the year.

January started off with great expectations, both good and bad. I expected to be kicked out of the institution and taken off benefits because of all the budget cuts to care and the Participation Act (by which employable people on benefits need to do busywork for their benefits). Then again, for my employability to be assessed as pretty much perfectly nil, the government has until the end of 2018. That means almost four more years to have a slight worry at the back of my mind.

I also wasn’t kicked out of the institution. It isn’t certain that I won’t be, because even though people in my care category fall under the Long-Term Care Act, the institution still has to face budget cuts itself. The Long-Term Care Act, so I’ve heard, guarantees institutional care to those most in need, which includes people in care categories four and up (I’m in five). Then again, if I were to decide to go live with my husband, I’d fall under the local government re funding my care, and they don’t have an obligation to fund anything.

The good expectations, ie. my goals and resolutions, have also gone down the drain pretty much. I had a bingeing episode today again, and am not exercising nearly enough. I also decided not to take up a college course, even though I looked at them a while ago, because, well, I don’t have the money. I might someday take a writing course, but they’re very expensive too. Since my husband and I have plans of refurnishing the apartment before I move in, we could use the extra savings.

Blogging is the only area in which I’m keeping up with my goals, although I’ve stopped working on my Dutch blog right after posting my new year’s resolutions there. I don’t think I posted any about blogging there anyway. At least I’m writing a few posts each week here. Of course, I do feel guilty about not doing what my pro blogger acquaintances tell me to do. Insert long rant on pictures, social media, affiliate programs and self-hosting here. I actually wrote it, but since this post is about january, not blogging fails, let me just say…

It’s going to be another of those years where nothing happens, nothing changes and I don’t have much to be proud of myself for. That’s what it feels like at the end of the first month. I know that January is my second worst month for winter blues, so it might get better. Let’s hope. For now, the weather doesn’t help much. We had a pile of snow on Saturday, which I hate most of the time. It’s gone now, but now we got rain. Needless to say I’m spending most of my time in bed again. Hoping it gets better real soon.

Age Is But a Number?

Age is but a number, we so often hear. There are many, usually older people who say they never grew beyond age twenty-nine (or whatever age they like the most). Some people even say they remain children at heart.

I can relate to this, and yet I can’t. I can relate in the sense that I strongly embrace my inner children and teens and the fewer and fewer selves who are older than me. Right now, only my crafty self identifies as older than my chronological age.

Yet I am also very much aware that certain developmental expectations are tied to certain ages. I was made aware before I was nine-years-old that, by age eighteen, I’d be leaving the house. My father jokes that the family cat should earn his high school diploma if he ever turns nineteen. The cat is only thirteen, but you get the idea. Even cats need to conform to developmental milestones, so people certainly.

Of course, in the privacy of my own room or even with my husband present, I can be childish all I want. I for example bought a Barbie doll when one of my inner children was particularly active. Nothing’s wrong with that. On the other hand, the only reason I can go on forums that are commonly visited by teens, is that I’m female. Had I been male, I would’ve been seen as a pedophile. (For clarity’s sake: I don’t go on forums that have a clear age limit or ever lie about my age, and I have absolutely no intention of exploiting anyone.)

My age is not only significant in highlighting the inappropriateness of my embracing childlike roles, but also in making clear that I’m missing out on adult milestones. I never spent much time in college, let alone graduating it, though I’m hardly technically a yooung adult anymore. I never held a job, even a summer job. I am not pregnant, let alone a mother. I hardly ever lived independently, which even on sites for people with autism is seen as a rite of passage into adulthood.

I have written about many of these issues before. I grieve the loss of my child identity (and an inner child is no excuse). I also grieve having missed out on adult milestones and likely missing out on even more as time goes by. Age is but a number, but you can’t just act whatever age you feel, at least not in public. That’s with good reason, of course, but it is still somewhat hard to deal with sometimes.

mumturnedmom

“Follow Your Heart!”

While looking at link-ups recommended by the women of the SITS Girls Facebook group, I came across the Pour your Heart Out linky by Shell from Things I Can’t Say. Shell has a great blog. Last week, she wrote a post for the linky entitled Do Your “It”. The message in her post was clear: follow your dreams. Don’t let yourself be held back by people who say that you can’t.

I immediately thought about my post about crafting. I have often been told that I shouldn’t try my hand at crafting, but I did, and, though I’m not particulalry successful, I enjoy it.

On the other hand, I’ve also often been told what I can do. People have told me that I can go to university and become a successful scientist if I stick to the right field. Yet I don’t want to become a scientist. I want to write and craft.

I have been overburdened at least as much as I’ve been underestimated. This is equally discouraging. When you fail time and time again despite being told that you “can”, you feel like a failure. At least I did. It often makes me eager to listen to the people who say that I “can’t”. At least I don’t disappoint them if I don’t try. Yet I disappoint myself.

One of Shell’s commandments is to follow your heart. I do this, or at least I try. I still have dreams that I feel kept from following because of the people who say that I can’t. Following a writing course, for example. I still have dreams that I do not follow because I’ve been pushed too hard in the past and failed, and now I believe I can’t. Finishing my intro to psychology course, for example. Yet this is not as strong a dream as it is an expectation. Really, I’m not too sure what following my heart entails, given all the “cans” and “can’ts” from the outside.

Parents’ Dreams and Expectations for Their Disabled Children

Today, Ellen from Love That Max wrote about wondering what her disabled son would do when he grows up. I wrote about this last week. As I said then, I knew early on that I’d become a normal or even above-average college student and later employee when I grew up. Up till age eighteen at least I didn’t show any inkling of thinking I’d not meet this expectation. I know that I had worries at night about burning out at my first job (as a teacher) and returning to the workforce several years later at an entry-level administrative position. I didn’t share these thoughts. I shared my dreams of going to the United States on a college exchange student visa and never returning. Cause, you know, with affirmative action and all my minority statuses, I’d surely get a green card. Sure!

Ellen shares her son’s similarly big dreams. Max will become a fireman when he grows up, and not only that, but he’ll live at the fire station. Ellen knows this is an unrealistic dream, but then again, maybe not. She refers to a news story about a man with an intellectual disability practically living at a firehouse. In similar ways, my parents probably knew the moving to the U.S. dream was unrealistic, but they tried to keep a positive attitude. I appreciate that

What I also want to say I appreciate, is that Ellen doesn’t turn Max’s big dreams into expectatiosn for him. I don’t know whether my parents truly believed I could go to the U.S., but they made it seem lke they did and they were half-expecting me to actually pursue this path.

With disabled children, more so than with non-disabled children, you need to walk the fine line between not encouraging them enough to dreaam and follow their dreams, and turning their biggest dreams into your lowest expectations. I like it that my parents looked up the subsequent cities I was obsessed with living in once in the United States and encouraged me to learn about these places. That is encouraging a child to dream. However, I’d have liked it if my parents helped me do some realistic planning. This doesn’t mean saying: “Girl, you’ll go live in an institution and do day activities there.” I’m pretty sure that, with the right transition planning from me, my parents and the staff at the training home I lived in for eighteen months, I could’ve come far closer to my dreams than I’m now. Then again, I’m relatively happy now – happier than I was when dreaming of the United States.

One last thought, which I’m struggling with. Your idea of success as a parent is not the only conceivable norm. I know that as parents, you have limits too, and, particularly if your child is above eighteen (or 21), you have a right to these limits. You don’t have an obligation to care for your child past this age. In this sense, I can only hope that parents of disabled children have an appropriate transition plan in place before their child turns eighteen. I can only hope they accept their children no matter their path to success, but I still understand that this is not something a child, disabled or not, can enforce.

Worrying About Your Disabled Child’s Future

Today, I came across a post by the mother of an adult with Down Syndrome on the topic of birthdays and more specifically, crying on your child’s birthday because you’re worried about their future. I left a lengthy comment, on which I want to expand here.

My parents probably cried on my birthdays too. At least they were usually emotional. I don’t know whether they worried about my future, but they sure thought about it a lot. I survived the neonatal intensive care unit with several disabilities, some of which wouldn’t be diagnosed until many years, decades even, later. I had had a brain bleed, retinopathy of prematurity, and a few other complications. My parents knew soon that I would be severely visually impaired, possibly blind. I don’t know whether they knew or cared about my other disabilities.

My parents started thinking about my future early on. They started communicating to me about my future early on. At age nine, I knew that I was college-bound and had to move out of the house by age eighteen. I don’t know whether it’s normal to plan so far ahead for a non-disabled child. My parents didn’t do this with my younger sister as far as I know.

It is understandable. With non-disabled children, independent living and college or employment are the default. Positive parents, we’re told by the disability community, keep the bar of expectations high, so they expect the same from their disabled children that they do from their non-disabled children. To be honest, I hate this attitude, which sends the message that to be successful is to meet up to non-disabled standards. We aren’t non-disabled, for goodness’ sake.

Let disabled children be children please. I understand it if parents worry about their child’s future, especially in societies that don’t have socialized health care and if the child is severely disabled. I understand that these worries get somehow communicated to the child. There’s no way of preventing this. What you can do, is minimize the worrying as much as posoible and turn it into positive but also unconditionally accepting encouragement.

That Was Unexpected #Theprompt

It’s time for the prompt over at Mum Turned Mom again, and this week’s prompt is: “That was unexpected.” My thought: well, what isn’t?

I have often been one to plan ahead, to make life seem predictable. I have another post in the w orks about my plans for the then future, now present, that didn’t come true. What I want to focus on now, however, is an unexpected occurrence that was positive: meeting my husband.

In Septembe rof 2007, I was strugglign greatly living on my own, feeling very alone. I wrote about this on a forum on which my now husband happened to be active back then too. He was looking to expand his circle of friends and sent me a private message asking to meet over coffee or tea somewhere in the city I lived in at the time. We first met in real life on September 19, 2007. It took over half a year from then before we were officially in a relationship, but that is beyodn the scope of htis post.

I used to believe in some western variety of karma. That is, when I was still badly depressed during the first few months in the psychiatric hospital, I believed my situation was some kind of punishment for my childhood behavior problems. I was almost completely oblivious to the guy visiting me roughly every other week, sometimes more often, and certainly didn’t realize he was in love with me. Isn’t it odd how the mind can play tricks on us during times of strong emotions or distress?

Journaling on Accomplishments and Hopes

From the age of ten or eleven on, I used to keep a journal, first on paper and then on the computer. I quit in 2003 when my computer crashed and I’d lost the last four months of journaling. Besides, an Internet diary had taken over my mind. In 2006, when I moved into independence training where we didn’t have an Internet connection, I started again. I continued to write a journal through my first two to three years in the psychiatric hospital, and then the Internet took over again. My online diaries have often been pretty persoanl, but over the years, I learned to write more for a general audience.

Nonetheless, journaling never ceased to capture my interest. I read and enjoy a lot of personal blogs. A few months ago, I tried to start a weekly gratitude journal here on this blog, but I never got past the first entry.

Today, I bohgt Journaling Tools by JanMarie Kelly, which is basically a very introductory explanation of journaling plus an assortment of prompts, alnd I thought I’d createa “jouranling” category here on the blog.

The first and third prompts in Kelly’s book are about accomplishments you’ve completed and expectations you have for yourself. Kelly asks the journaler to write ten of each, but I am not sure I can get to that many, so I guess I’ll just reflect on a couple.

My biggest accomplishment so far has been graduating from high school. I went to a mainstream school where I was the only blind or visually impaired student. I am also gifted, as were about thirty percent of the students, and of course I have Asperger’s, which I suspected at the time but had not been diagnosed with yet. I remember when I was in the tenth grade, my teachers saying in a performance that only students who had something different about them – gifted, Asperger’s, blind, dyslexic, etc. -, could go to their school. “But our little Louis William George has nothing wrong with him, not even fear of failure, so he can’t come to this school?” Quite funny.

My second biggest accomplishment is choosing my own path of study, which was quite at odds with my parents’ ideas of an appropriate field of study for me. I chose psychology, and completed my foundation (first year) in 2007. I reaalize that psychology is not an ideal major for someone with a communication disorder like autism, and I guess so neither is linguistics, which I majored in the following year. The only thing I can say I accomplished during the two months at that university, is getting a B in intro to linguistics despite taking the exam in the week of the crisis that led to my hospitalization.

I honestly cannot think of any more accomplishments that I consider big enough to list here. Of course, I lived independently for three months and am married, but are these accomplishments or just things I did?

I also cannot think of ten expectations for myself. I used to be able to think of several dozens when I was still in school. I wanted to graduate from college, get a Ph.D., live in the United States, get a job as a researcher, and many other expectations that are out of reach for most non-disabled people. Now I cannot get beyond hopes. I will just write a list of hopes that I have for my future, and think I can get to ten with this.


  1. Complete some more further education.

  2. Get a volunteer job.

  3. Live in a workhome or other suitable supported housing.

  4. Learn to cook independently again.

  5. Work as a recovery worker either on a voluntary or paid basis.

  6. Get any paid job.

  7. Live with my husband./Li>
  8. Visit the United States.

  9. Take and complete some writing courses.

  10. Write a memoir.


Yeah, I made it to ten. 🙂 In fact, I could think of some more, but these are enough f o now.