Bucket List for 2017

It’s already January 9th. This means it’s a bit late for new year’s resolutions. I wrote about some dreams for the new year on my Dutch blog. The reason I called them dreams rather than resolutions is that I didn’t want to feel the pressure of having to actually keep them. I seem to like writing about my goals much more than actually pursuing them, after all. On my list of dreams was the mandatory weight loss goal that’s been sitting on my resolutions list for years. This year, I admitted that I mostly wrote it down out of a sense of obligation. I am just not that motivated for weight loss. In fact, yesterday I bought a bag of winegums and only shared them with my fellow patients because my husband threw around the risk of my developing diabetes. Now my blood sugar was in the low normal range last week when I had it measured, but still.

My most important goal, of course, is to get out of the freakn’ institution. Now my funding runs out at the end of the year anyway, so whether I’m ready or not I will be out then anyway. I can say that I’m finally feeling a bit ready though. It’s still hard, not knowing what sort of help I’ll get. Other than that I’m pretty much done with the institution, regardless of what my psychologist would like to believe.

Today, rather than repeating some general goals, I am going to write a bucket list of things I’d like to do in 2017. Here goes.

1. Learn to use an iPhone and buy one. I am waiting for the eye doctor who did my surgery in 2013 to write a referral for me to get iPhone use training at the blindness agency. Yes, it has to be an eye doctor referring you, which is stupid, since if you’re totally blind, what use is there in having an eye doc? I will either get this training at the residential home for elderly blind people in the institution town or at the blindness agency in the nearest big city, depending on whether I’m still in the institution once I can get started. Once I learn to use the iPhone, I want to buy one too. (By the way, iPhones are the most user-friendly smartphones for blind people, which is why I’d get training to use an iPhone.)

2. Learn to use Windows 10. I am pretty sure my computer isn’t going to survive 2017. This means getting a new one and that means learning to use Windows 10. Yes, I’ll still want a computer if I buy myself an iPhone, because smartphones cannot do everything PCs can and vice versa. I need to convince my new health insurance to fund a new version of JAWS, because my current one doesn’t work with Windows 10. I initially thought I’d switch to NVDA, a free screen reader, but it still has some major drawbacks.

3. Go swimming. My husband badly wants to go on vacation this year. I don’t care for vacation that much, but I’d love to swim in the sea. Alternatively, I want to finally go swimming at the pool again.

4. Choose and buy some more furniture for in my room at home. Currently, there’s just my desk and the remains of a cupboard. My husband wants me to get a bed in that room. I saw a nice bunk when we went to Ikea on Saturday, but it cost €280. I at least hope I’ll have a nicely-furnished room by the time I move out of the institution.

5. Leave the institution, for goodness’ sake. Need I explain?

What is on your 2017 bucket list?

My Achievements in 2016

The year 2016 is almost over and I feel pretty disappointed. It should’ve been the year in which I finally left the mental institution, but I didn’t. I mean, I’ve been resolving to leave the hospital every single year since 2008, but this time I thought I was so close. It’s even worse, because I get blamed for not having achieved this goal. My psychologist tells me I never want to leave and that I try every single trick to delay my discharge. This to her proves my dependent personalty disorder. Well, it wasn’t me who took four months to come up with that diagnosis. It wasn’t me who still hasn’t referred me to outpatient treatment and it wasn’t because for whatever reason I blocked this – I didn’t.

In many other ways, this year has been a disappointment. Still, I need to focus on the things that I did achieve in 2016. They may not feel important to me at this point, but that is only a matter of perspective.

1. I have not been in seclusion all year. I tend to think that, because I’m supposed to leave and there’s no seclusion outside of the institution, staff are less likely to ask me to go into seclusion. There is likely some truth to this, but I also have been acting out much less over the past year than I used to. It isn’t over yet – I broke a mug and self-injured only a few days ago. It’s better though.

2. My daily medication has been stable all year. I did finally get a prescription for a benzodiazepine to use at most twice a week as-needed. I hardly need it though.

3. I managed to binge eat less than I did last year. Though I resolved to get my BMI under 30 and this was a massive fail, my weight remained stable over the year.

4. We got an elliptical trainer at home. Though I didn’t use it as regularly as I’d have liked, I enjoyed exercsing when I did.

5. I found a craft that I enjoy. This is one of my biggest wins of 2016. Though I don’t make soap or skin care products as regularly as I intended to anymore, half a year in I still enjoy the craft. I also finally felt confident enough to make soaps and skin care products for other people. I never quite felt as self-confident about my other crafts. Recently, I experienced some setbacks, in that a few soaps I made over the past few weeks turned out worse than even my first soaps. However, I’m not about to give up (yet).

6. I didn’t give up blogging, even though I was tempted. I kept up one Dutch blog from early June until now, although December was a bad month. Consistent with more posts here, as always, my posting on there declined. I’m not about to give up eithehr blog though.

In short, my theme for 2016 has been “persevere”. I faced many setbacks and disappointments, but I didn’t give up. I hope that 2017 will be better than 2016, but if it isn’t, I hope I will keep on persevering.

You Baby Me Mummy

Christmas Tag

Tags are a big thing on Dutch blogs, but I rarely see them on English-language blogs. I love them. Yesterday, finally, I found an English-language Christmas tag. I alreaddy filled a Dutch one in on my Dutch blog. It’s already 11PM on Christmas day, so I am rather late to the party, but I’d still love to fill this one out.

What’s your favourite Christmas movie?
Honestly, Home Alone is the only one I know and I haven’t even seen it in full. Back when I was a child, my parents and sister used to watch musicals on TV particularly on what in the UK is called boxing day and is called second Christmas day in the Netherlands. I particularly remember one called My Fair Lady, but didn’t like it.

Have you ever had a white Christmas?
I don’t remember. Googled it and the last white Christmas we had here in the Netherlands was in 2010, so yes.

How do you usually spend the holidays?
With my parents or in-laws usually.

What’s your favorite Christmas song?
It’s Gonna Be a Cold, Cold Christmas by Dana. I don’t mind most Christmas songs, although there isn’t any I really like. However, I don’t understand how people’s favorite can be Mariah Carey’s All I Want for Christams Is You.

Do you open any presents on Christmas Eve?
No. We don’t give each other Christmas presents. This used to be because in the Netherlands, St. Nicholas on December 5 is a bigger hliday (although it’s losing ground). Now in my family we don’t celebrate this anymore either.

Can you name all of Santa’s reindeer?
No, I’m clueless about those.

What holiday traditions are you looking forward to this year?
I didn’t look forward to much and we don’t realy have traditions.

Is your tree real or fake?
We don’t have a tree at home, because our cat would climb it. On the ward, we have four fake trees.

What’s your ultimate Christmas treat/food/sweet?
I love most, but my all-time favorite is a type of cookie called cinnamon stars. I haven’t had them in years though.

Be honest! do you prefer giving or receiving presents?
Receiving. I find giving presents stressful, particularly thinking of what others might like.

What’s the best present you’ve ever received at Christmas?
Like I said, we don’t give out Christmas gifts. Besides, I have no idea what the best present I ever received was.

What would be your dream place to visit for the holiday season?
Allow me to stay home please. I don’t enjoy the lights or snow anyway.

Are you a pro present wrapper or do you fail miserably?
I don’t even try.

Most memorable Christmas moment?
I don’t know. I’d say last year’s Christmas gourmet with my in-laws, because that’s the first that comes to mind.

What made you realize the truth about Santa?
This is about St. Nick again. My father had recorded a tape one year in which Black Peter, Santa Clause’s helper, pretended to be stuck in the chimney. (Here, the traditional storyline goes that St. Nick and his Peters ride the rooftops and throw presents down the chimney.) When I had sort of realized the truth, Dad showed me the tape.

What makes the holidays special for you?
The food and nothing else. I hate the forced niceness and togetherness. I also don’t particularly like the decorations.

Hope you all had/have a nice Christmas and boxing day.

#Depression: What It Feels Like to Me

I have had experience with low moods since I was a child. Nonetheless, until a few months ago, I was never diagnosed with depression. During the last round of diagnostic revisions, my psychologst decided to diagnose me with depressive disorder NOS along with dependent personality disorder and borderline personality disorder traits. I am not sure I agree and my psychologist admitted at first that it was more her needing to give me a diagnosis on axis I to warrant me staying in the institution than my actually needing treatment for this.

Today, Aspiecat described what depression is like for her. I could relate to some of these experiences, but nto others. I am going to describe what it’s like to be depressed for me.

Let me first say that low moods are my default. I am pretty sure that dysthymia, ie. chronic but mild depression, is a more useful diagnosis for me than depressive disorder NOS. Apparently though my psychologist doesn’t feel I meet the criteria for that. Really not remembering a prolonged time when I did not feel low makes me wonder whether I’m truly depressed or just pessimistic. I know that depression and optimism do not mutually exclude one another, but I tend to gravitate more towards the negative than the positive.

Then there is the state, as opposed to the trait, of being depressed. Like Aspiecat, I experience two forms of depression: the first in which I feel numb and inert and the second in which I mostly feel despair, sadness and often anger. The former tends to last longer and be harder to overcome. During this state, I sleep more than usual, eat irregularly but usually more than normal, am slower than usual and generally unmotivated. I don’t usually experience the extremest of dark thoughts in this state. Rather, I worry and feel a bit anxious. I may experience suicidal ideation during this state, though it’s rarer than when I’m in my state of despair. I am also less likely to act destructively, unless you count binge eating. When I do experience suicidal ideation in this state, it’s more of a logical, thought-based kind focused on self-hate rather than an active wish to die. I just can’t be arsed to care about life.

In the state of what Aspiecat refers to as meltdown, I, like her, experience all kinds of negative emotions. I think I may be somewhat alexithymic (unable to read my own emotions) too. I often express my emotions as anger when I’m in this state anyway, even though I think I experience many other emotions. I am more likely to experience suicidal thoughts and to engage in destructive behaviors in this state. I am usually agitated rather than slow.

Unlike Aspiecat, I prefer the state of despair to the state of numbness and inertia. There are several reasons for this, one of which may just be the fact that I’m currently numb and not liking it. Any emotion seems better than this state of inertia now. I however also feel that my despair is more actionable, because it tends to be more situational.

Other people also tend to understand my state of meltdown more than my state of inertia. They see me lying in bed all day as a choice, whereas when I’m in meltdown, they see my despair. They may not accept my agitation in this state, but at least they notice that I’m not doing well. My medication also tends to help with this state more than with numbness. I do take an antidepressant in addition to an antipsychotic, but I’m not so sure it helps with my low moods. The antipsychotic and maybe the antidepressant too do take the edge off of my agitation.

Unfortunately though, people see my state of despair as more needing treatment than my state of numbness. This may be because I don’t tend to respond well to psychotherapy and medication-wise, there is simply more to be done against agitation. I take a high dose of an antipsychotic on a daily basis. I also have a low-potency neuroleptic, an anti-anxiety benzodiazepine and a sleeping pill (also a benzo) as PRN medications. All of these can be seen as depressants. Like I said, I do take an antidepressant too, though in a low dose. I am not so sure it works, but then again it isn’t a great medication for the kind of atypical depression I experience. By this I mean that it isn’t shown to be too effective with depression that is characterized by inertia, eating and sleeping too much and general anhedonia (numbness). This kind of depression is particularly hard to treat.

Because other people are more bothered by my meltdowns than by my state of anhedonia, I also feel they tend to want me to be numb rather than agitated. I mean, of course they don’t actively want me to be numb, but they see it as less of a problem, because it causes little disruption to others. I go along with this and have never asked for more help, medication-wise or otherwise, with my inertia-based depression. I am not so sure that I should.

Review: Bee Good Lip Balm Trio

Last month, my husband took my Burt’s Bees lip balm that I had bought a long while before (and wanted to review but never did) home with him. I make my own lip balms, but there wasn’t one he liked. Quite honestly, most that I make are way too hard for my liking too. That being the case, I needed, or at least wanted, some new lip balm. I checked LookFantastic.com, because I’d bought my Burt’s Bees lip balm there. However, even though I loved it, I didn’t want the same balm again. That’s me being adventurous.

Bee Good Lip Balm Trio

I don’t remember whether I found the Bee Good lip balm trio in the Christmas selection or in the general gift finder. The packaging looks pretty appropriate for the holidays or so I’m told. I loved the shape of the packaging, though the lip balms didn’t seem to fit into it neatly side by side. The biggest drawback of the packaging was that it was hard to open without tearing it up, at least with my poor fine motor skills. The packaging should be reuseable, but I preferred to just let the lip balms sit beside my sink.

There are three lip balms in this set, of course: vanilla & honey, lime blossom & honey and raspberry & white chocolate. Each is supposed to intensely repair dry, chapped lips. They are enriched with British beeswax. That’s not surprising, as I also always use beeswax in my lip balms and haven’t seen any recipes that don’t use it. However, I tend to think it’s the beeswax that makes my lip balms so hard. These Bee Good lip basm are surprisingly soft.

Each tube has what is called a tapered delivery tip. I don’t know what that means, but it’s supposed to make application easier. Indeed, it’s pretty easy to apply just the right amount of lip balm, at least once I figured out how the tip works. Also, the tip looks like it’s quite hygienic.

Bee Good Raspberry & White Chocolate Lip Balm

I started out by trying the raspberry & white chocolate lip balm. I loved its scent. I was a little surprised to find what felt like exfoliant on my lips. That I think just meant I applied a little too much.

Bee Good Vanilla & Honey Lip Balm

I later tried the vanilla & honey lip balm. This lip balm’s scent was even better. I love vanilla and honey and both could be easily smelled.

Bee Good Lime Blossom & Honey Lip Balm

Lastly, I tried the lime blossom & honey balm. That one’s scent was just too citrus-y for my liking and I didn’t smell the honey. Now I hadn’t expected to like that one, so it wasn’t too big of a disappointment.

I have this weird experience where, though my lips could sure be repaired by lip balms, they feel worse after the lip balm wears off. That is no different with this trio, but at least it isn’t worse. Overall, I like this set.

Classes #FridayReflections

It’s still Thursday in my part of the world, but the #FridayReflections linky has already opened. This week, one of the prompts asks us to decide which class from school or college we’d like to take again if we could.

There were many subjects in high school that I liked. I was big on politics at the time and had a particularly clueless social studies teacher. He once made three big factual mistakes in a five-minute lecture on the elections. In my memory, I corrected him. I couldn’t do that now, as I barely know who’s on the government now. So maybe I’d do social studies again, but hopefully with a more knowledgeable teacher.

I would also love to go back to English class with Mr. E, who had worked a year in the United States while an American teacher came to our school in the Netherlands. This was when I was in eighth grade and could barely understand the American teacher. I wasn’t particularly good at English in seventh and eighth grade. In ninth grade, I was angry with Mr. E for telling me he had to specially type his tests for me instead of handwriting them so I’d better study for them. You can bet that as a fifteen-year-old adolescent, I didn’t bother. From tenth grade on, I loved English though. I had become an avid Internet user over the summer break and had discovered that most valuable information I wanted to read was in English. I became quite proficient at it as I started an online diary (which later morphed into a blog) in the fall of 2002. I loved Mr. E’s stories of his time in the United States, so maybe I’d take his class again.

The first class that came to mind though when I read this prompt, was not a high school class. It was my college psychology class. The teacher was thought of as boring by most students. Because his class was at the end of the day, many students would rather catch an earlier train home than go to his class. You see, we were part-time students, taking our classes on Mondays in the afternoon and evening, and this professor’s class took place from 7:30 till 9:00 PM. Many students, including myself, also didn’t live in the college city, hence the need to take the train home.

This professor though was one rookie lefty and I seemed to be the only one who liked this. He threw Socialist Party merchandise into the auditorium in the days leading up to the 2006 parliamentary election. I was a Socialist Party member, so I didn’t sign the complaint he got for this. Not that I would have signed it had he shown a conservative affiliation either. I did sign a complaint about the first test we got in this class. I still don’t remember why I signed it, but most likely it was largely due to peer pressure. This was obviously before results were in, but I ended up scoring a B.

Looking back, I would’ve loved to attend all of his lectures rather than catching an early train. He had a great sense of humor. Just this morning, I recalled the tale he told us about getting a referral to a psychiatrist for wondering whether the fact that he acquired a spinal cord injury early in life and had to be in rehabilitation a lot changed his personality. The psychiatrist barely listened before writing him a script for an antidepressant. I remembered this tale because, after yesterday’s post, I was wondering what my motor difficulties could be diagnosed as, if anything. If I ever ask my GP to refer me for diagnosis for this, I hope I won’t run into a physiatrist or neurologist with the same attitude as this professor’s shrink.

I got an A for the second test in this class and a B for my research project. I would love to do the research project again, but would choose a different topic. I had many topics in mind that were disorders I later ended up being diagnosed with, like borderline personality disorder, dissociative identity disorder and autsm. I finally settled on the subject of mild intellectual disability though. Maybe I’ll do a similar project one day on one of the topics I had in mind then.

Living my Imperfect Life

Adaptations I’ve Used for My Disabilities

A few months ago, I wrote a post in which I described my limitations in as much detail as I could. I had just agreed to settle on a brain injury diagnosis rather than autism, so had to figure myself out all over again. Since then, that diagnosis was revised several more times and I finally decided to want a second opinion. I want answers to what’s going on with me.

The good point of that post I wrote, however, is that I felt free to describe my limitations in a non-judgmental way. As a follow-up, I am going to write a post today on the adaptations I’ve used throughout my life for dealing with these limitations.

The first adaptations I remember using, when I was about four, were not for what most people think of as my primary disability, ie. blindness. When I was four or five, I had to have my left foot in a cast to prevent my heel cord from becoming too short. This problem is common in children wth motor difficulties like cerebral palsy, though it occasionally happens to children with other neurological conditions too. I also had limited strength in my hands, so I got to use scissors which bounce back automatically. When I finally got to use a Braille typewriter, it had lengthened keys which were easier to press, too.

When I went to the school for the visually impaired at the end of Kindergarten, I was introduced to large print adn later Braille. I started learning Braille when I was seven-years-old. Because I was a print reader before I became a Braille reader, I had an advantage and a disadvantage. I could already read and knew my letters, but Braille wasn’t my first written language. I didn’t become truly proficient at Braille till I was around twelve and still can’t read it as fast as some blind people.

Apparently, around age seven, I had enough vision to ride a bike. I didn’t have the balance though. I still don’t know whether it was my parents being pushy or I truly had enough vision to safely ride a bike, but in any case I got a large trike paid for through the city department of disability services. My parents transported it to our new city when we moved when I was nine, even though this required approval from the authorities. I used the tricycle for about five years, until I became too blind to safely ride it even for purely leisurely purposes in my quiet neighborhood.

By the time I transferred to the school for the blind at age nine, I no longer needed most adaptations for my motor difficulties. I could use a regular Braille typewriter and in fourth grade, we weren’t crafting anymore anyway, so no scissors. I had also by this time become a full-time Braille user, though particularly in fifth and sixth grade I still peeked at the large print atlas every now and again. I got a handheld magnifier for my birthday or St. Nicholas around that time, because without it I couldn’t use the atlas. I had a large collection of tactile maps too, which I also loved.

When I was eleven, I got my first laptop with Braille display. I had occasionally used my parents’ computer before then, but had by this time long been too blind to even see very large letters on the screen. I tried for a bit to use a screen magnifier on the school computer, but I quickly learned to use Braille and syntehtic speech on my own computer.

I also had a white cane, of course. I started cane travel lessons when I was around seven, but rarely used my cane until I was fourteen. Then, when I had entered eighth grade in mainstream education, I had realized I was going to look blind compared to all fully sighted fellow students anyway so I’d better use a cane.

I went through school using mostly my computer for learning. We had a number of tactile educational materials, but I rarely used these. I hated tactile drawings, because I had an extremely hard time figuring them out.

In college and university, I used my computer with Braille display only. I also had gotten a scanner, so that I could scan books that weren’t available in accessible formats. A few years ago, I bought myself an OpticBook scanner that is especially good for scanning books. I rarely used it though, because eBooks became accessible to screen reader users in like 2013. I also rediscovered the library for the blind and last summer, like I’ve said, became Bookshare member.

I never used adaptations for cognitive impairments even after my autism diagnosis. I wanted to learn to use some and I still badly want to get a weighted blanket someday. I also am currently exploring adaptations for my fine motor issues. Because I felt more secure this way, I did for a while use a mobility cane. However, it was too long, then when someone had sawn off a piece it was too short. Also, it isn’t safe to use a mobility cane for me without also using my white cane and because of limited use of my left hand, I can’t use both. The adaptive equipment store does sell mobility canes with the white cane look, but these only have the advantage of making one recognizable as blind. They can’t be used for feeling around for obstacles. I could of course use a mobility cane with the white cane look in place of my white cane when walking sighted guide. However, I have learned to use my white cane for some support. The main reason I choose to use my white cane rather than a mobility cane with white cane look, however, is that I feel too self-conscious. I feel that I’m not mobility-impaired enough for this. I do wonder whether I’d feel more confident walking if I had a mobility cane, but I fear people will judge me for exaggerating my disability.

Dear Psychologist: Why I Believe I’m Autistic (And Why It Matters)

My psychologist wrote the referral letter for my second opinion last Wednesday. Because this second opinion thingy is now becoming real, I have been thinking of why I believe I’m autistic after all – and why it matters. I have tried to explain this quite a few times already, but nobody amongst my staff seems to understand. Because some of my readers just might actually get it, I’m writing it on my blog. I chose to write this in the form of an open letter to my psychologist, but I’m not sure I’ll ever consciously point it out to her.

Dear Psychologist,

You have been telling me ever since you became my responsible clinician in late 2014 that you don’t believe I’m autistic. You initially said brain injury explains my symptoms far better, but you seemed not to care. We needed to treat symptoms, not syndromes, you said. Yet last summer, you changed my diagnosis. And you changed it again. And again. You claim this was at my request. Fair enough, I told you I wasn’t happy with just a borderline personality disorder and adjustment disorder diagnosis and I wanted a second opinion. However, it was you who offered to change my diagnosis to brain injury-related personality change, apparently to avoid me getting a second opinion. I was stupid enough to go along. The further diagnostic changes were solely your responsibility.

Yes, I told you it doesn’t matter whether my diagnosis is borderline personality disorder and adjustment disorder or dependent personality disorder, BPD traits and depressive disorder NOS. To me, neither diagnosis explains why I’ve been having problems all my life. After all, personality disorders first become apparent in a person’s teens or early twenties, not when a person is a young child.

There were – or at least, there should’ve been – many signs of a developmental disability when I was young. Even things that my parents tout as signs of genius, should when combined with the signs that point to delay, signal a developmental disability. Like my ability to calendar calculate. Or my first word. It was “aircraft industry”, echoed from my grnadpa when I was ten-months-old (seven months corrected).

These are cute factoids about me. They don’t necessarily signal autism when taken alone. Then there are the signs that point to delay. I had motor skills delays, but these could be due to dyspraxia or mild cerebral palsy. My parents don’t know whether these were ever labeled as such. I was a toe-walker – still am when stressed. Though I walked on time (at fourteen-months-old), I didn’t sit or roll over without physcal therapy intervention.

My language development was quite advanced. I did reverse pronouns, but my parents say this happened only for a short while. I took many things literally growing up. I also had one word that I’d use obsessively and often out-of-context after another. The psychologist who diagnosed me with Asperger’s in late 2007 brushed this off because I couldn’t come up with examples right then. I can now, but I don’t have the energy to elaborate in English.

My social and emotional development was delayed from a young age on. Even though I didn’t have many meltdowns or temper tantrums until I was about six, I did have my problems. I couldn’t talk to children my age. I had trouble forming friendships. I was even more self-centered than any young child.

When I became aware of my differences, I started acting out. Educational psychologists blamed this on my difficulty adjusting to blindness. What if I’d become aware of my social difference then, too? Even though I didn’t start regularly having temper outbursts till I was about six, I remember head-banging and hand-biting from a younger age. I also had this crawling movement in bed that parents of other kids went to the doctor for when the children were toddlers. Well, let me tell you I did this till I was nineteen.

When I became a teen, I had many more difficulties. One could no longer blame my high IQ, because I was in a high-level high school were 30% of the students were intellectually gifted. Maybe then I did it all because I’m blind, even though no-one at the school for the blind had displayed these behaviors either. Or maybe I was precocious for developing a personality disorder. I guess your logic would go like this.

I could give you dozens more examples of why I believe I’m autistic. I have been thinking on these for the last few days. Many, however, are just too embarrassing to go on my blog.

My parents may not be involved with my care now, but you never asked them participate in a developmental interview. Not that I’d want you to do an autism assessment on me, after all the flawed arguments you’ve spun. You won’t believe that someone with hydrocephalus can be autistic, even though there’s plenty of literature showing that they can. You won’t believe that preemies are more likely to develop autism than children born full-term. I even didn’t bother correcting you when you wrote in my referral letter that I had had a stroke. News flash: an intraventricular hemorrhage, which is the most likely cause of my hydrocephalus but was never ascertained, is not a stroke. I don’t expect you, a psychologist, to know the difference, but then at least stop basing your diagnosis on it.

But you’ll say we should look at symptoms, not syndromes. You’ll say it doesn’t matter for my care whether I’m diagnosed with brain injury, even if it isn’t in my DSM-IV classification, autism or a personality disorder. To be honest, the main reason this whole diagnosis thing is important to me, isn’t care. It’s understanding. I need recognition of my struggles. I need to know I’m not the only one. As much as you hate this, I need something I can google and join support groups for. I’m tired of shooting in the darkness. Granted, care matters too. Personality disorder patients have far fewer self-care problems than autistics and warrant a totally different approach. I wouldn’t mind that approach if it turly worked for me, but it doesn’t. However, I don’t mind having a personality disorder diagnosis along with autism – I had one for nearly three years.

You won’t understand a thing about autistic culture. I won’t explain. I don’t have the spoons for that. (Google the spoon theory if you want to know what I mean, if you even care.) Suffice it to say that autism is not just a disorder – it’s an identity. It’s something, unlike brain injury, that is part of us before we’re old enough to realize it. It’s not a disease – it’s a part of who I am.

Hannah Spannah

A Call to Revive the Concept of “Cousins” in the Autistic Community

Today, I was rejected from a Dutch autistic women’s forum. I had already been kicked off last August for having lost my formal autism diagnosis, but had reapplied because I am in the process of getting a second opinion. Back then, my losing my diagnosis had stirred up a lot of commentary as to why I’d been presenting as autistic for six years – the time that I’d been a member of the forum – if I wasn’t. Well, for one thing, that’s just one professional’s opinion that I’m not autistic, while three others said I am. Not recently, but since when does one lose an autism diagnosis as one ages? However, the fact that the admins doubted I’d get anything but suspicion and hostility if I came back, prompted them to reject me for good. Thankfully, people in other autism groups, especially international ones, were still welcoming and supportive.

Then I read Mel Bagg’s blog post from last month, which was on the subject of autistics and “cousins”. A “cousin” is someone who is not autisitc, but who has some significant experiences that are similar to those experienced by autistics due to a related condition. For example, Mel Baggs tells the story of a person with hydrocephalus who could relate to many of the social and communicative difficulties that autistics experience, but wasn’t autistic. As I have hydrocephalus myself, this struck a chord with me.

Mel Baggs”post is a call to revive the concept of “cousins” in the autistic community. I applaud this, for it’d finally mean I could fully feel in place in the autistic comunity again. I mean, autistic communities used to ask that no neurotypicals join or participate. now they’re asking allistics – a term I’d never heard of but which means non-autistics – to keep out. Though most internatoinal communities who state allistics are not allowed, welcome self-diagnosed autistics, I still feel a bit left out.

Like Mel Baggs says, the autistic community can be very excluisionary. An example is the Dutch forum I got kicked off from. I didn’t know this until I lost my diagnosis, but apparently it has the rule that people who suspect they’re autistic get a year to get a formal diagnosis and if they don’t get it, they’re out. I mentioned this is a women’s forum for a reason, because women have a particularly hard time getting formally diagnosed. The other main Dutch autistic community, open to all genders, doesn’t ask for a formal diagnosis. Another act of exclusion applied by autistic communities is the assumption that Aspies (people with Asperger’s Syndrome) are somehow fundamentally dfferent from other autistics, and subsequently the creation of Aspie-only spaces. Other groups allow “high-functioning” autistics in only. This, obviously, perpetuates the division of the autistic community, which perpetuates discrimination. For example, if Aspies are fundamnetally different from other autistics, people can use the idea that Aspies are not really disabled, which is populated by some, to exclude anyone they see as an Aspie from protection by laws like the ADA. They can also continue advocating for harmful “treatments” against autistic people’s wishes based on the idea that autistics who can advocate for themselves are not “autistic enough”. I don’t say that the autistic community is responsible for discrimination by non-disabled people. I do say that those who exclude some people from the community based on being “not really autistic”, “not autistic enough” or too “low-functioning” or “high-functioning”, do contribute to it.

Back to “cousins”. The criteria for autism keep changing over time. I easily met DSM-IV criteria for Asperger’s Syndrome. I probably meet DSM-5 criteria for autism spectrum disorder too. However, I also have hydrocephalus, which according to my current psychologist, means I can’t be autistic. I believe DSM-IV might agree, though DSM-5 definitely doesn’t. Does the fact that I meet the criteria for an autism spectrum disorder, mean I’m legitimately autistic, or does the fact that I have hydrocephalus, mean I’m not? Really, that shouldn’t matter, if “cousins” are welcomed into the autisitic community again. After all, what counts then is not diagnosis or self-diagnosis, but whether I relate to the lived experience of autistic people. It also means the community can no longer be divided along the lines of stereotypes, formal diagnosis or the lack thereof, or suchlike. Everyone who shares the experience of social and communication problems, is welcome. This in turn means we can form a better front against discrimination, because we no longer fall into traps like being accused of not being disabled enough for protection.

Book Review: Handle With Care by Jodi Picoult

Last June, I got a Bookshare membership after delaying it for years. The proof of disability form had literally been sitting in my drawer since like 2010. Granted, back then people who weren’t U.S. residents or citizens had only very limited access to books, so it was hardly worth it. Since the Marrakesh Treaty though, international distribution of books for the purposes of access for visually impaired people is much easier. Don’t ask me about the technicalities. I’m just happy that most books are now available to me.

I read My Sister’s Keeper by Jodi Picoult in like 2005, when I briefly used the UK’s National Library for the Blind. I was no longer able to use their services after some books were lost on the way back. Yes, they at least used to distribute Braille books to international members only. Anyway, since reading My Sister’s Keeper, I badly wanted to read more by Picoult. Partiuclarly, I wanted to read Handle With Care from the moment it came out. Now, with my Bookshare membership, I got a chance to read it. Because I started reading many other books too, I didn’t finish Handle With Care till yesterday. Here is my review of it. It contains spoilers!

Synopsis

When Willow is born with severe osteogenesis imperfecta, her parents are devastated–she will suffer hundreds of broken bones as she grows, a lifetime of pain. Every expectant parent will tell you that they don’t want a perfect baby, just a healthy one. Charlotte and Sean O’Keefe would have asked for a healthy baby, too, if they’d been given the choice. Instead, their lives are made up of sleepless nights, mounting bills, the pitying stares of “luckier” parents, and maybe worst of all, the what-ifs. What if their child had been born healthy? But it’s all worth it because Willow is, funny as it seems, perfect. She’s smart as a whip, on her way to being as pretty as her mother, kind, brave, and for a five-year-old an unexpectedly deep source of wisdom. Willow is Willow, in sickness and in health.

Everything changes, though, after a series of events forces Charlotte and her husband to confront the most serious what-ifs of all. What if Charlotte had known earlier of Willow’s illness? What if things could have been different? What if their beloved Willow had never been born? To do Willow justice, Charlotte must ask herself these questions and one more. What constitutes a valuable life?

Review

The book, like My Sister’s Keeper is written from every main character’s viewpoint alternatingly except for Willow’s. Throughout the book, the main characters tell the story as if addressed to Willow. In other words, she is referred to as “you” all the time. I like this. Even though Willow doesn’t get a voice till the near end of the book, the other main charactes do give the reader a great insight into her character.

All main characters are very well-formed. Because of this, a lot of other stories are interwoven with the main story of the wrongful birth lawsuit that Charlotte files against her obstetrician. For example, Piper, Charlotte’s obstetrician, is also her best friend. Marin, Charlotte’s lawyer, is dealing with the search for her birth mother. And Amelia, Willow’s sister, struggles with bulimia and self-injury.

Because each charater gives their own viewpoint, both sides of the wrongful birth lawsuit are equally described. Though I hoped most of the time that Charlotte would win, I also symapthized with the other party. I wasn’t sure of the outcome until it was spelled out in the book.

The fact that the book has a lot of twists and turns, so that you’re never sure of how it ends, is mostly a good thing. It ends up being a very bad thing though as I read the last few pages. The book ends with Willow dying, which in my opinion only spoiled the entire book. I mean, there was some point to Anna dying in My Sister’s Keeper. I didn’t see that this time. As such, the book definitely deserved a five-star rating before I’d completely finished it. Once I’d read those last few pages, not so.

Book Details

Title: Handle With Care
Author: Jodi Picoult
Publisher: Atria Books
Publication Date: March 2009