Tag Archives: Writing Prompts

Agree to Disagree

Prologue: two weeks ago, it was decided that, for two weeks, I would not be allowed to attend my day activities center in the afternoons. The reason was three new clients would be joining us and that would mean there’d be less support for me – at least while they get used to the day center. This made me quite unquiet. I wrote about this for Five-Minute Friday last week too, struggling to write a long enough, contextual enough post to be search engine-friendly within five minutes. Then I saw that people did prologues and epilogues to their posts that apparently do not count towards your five minutes of wrting time. So I decided to do this too. Here is my actual piece.

Yesterday, my staff asked me if I’d been feeling calmer now that my day activities hours were cut. I didn’t respond initially. Later, I did, assuming she had said, not asked, that I was calmer now.

I told her I feel awful each afternoon. Of course, the group is quieter without me, so I could see where she’d be coming from if she wanted to keep me out of day activities longer. I didn’t assume she had my best interest in mind – or at least the manager, who decided on these matters, didn’t. I’m not intellectually disabled, so I’m not the day center’s primary target population. As such, if there’s a disruption in the group that involves me, I’m the one who is out.

Indeed, today, I was informed that my day activities hours will remain as they were for the past few weeks. It was all in my best interest, the staff tried to say. Well, agree to disagree.

Epilogue: I was quite distressed by this whole thing during the day. Then I remembered someone’s comment on my FMF post from last week, that God never closes a door without opening a window. On Thursday, I will have a meeting with my day activities and home support staff, my community psychiatric nurse and the local authority social consultant. I hope this meeting will yield some positive results.

Linking up with Five-Minute Friday again.

Surrender

Last week, it was decided that, for a while, my day actvities hours will be cut. It was also suggested that my current day activities center, which caters primarily to people with intellectual disabilities, may not be the best fit for me. I’m not intellectually disabled, after all. I’m autistic, but if you’re of at least average intelligence, somehow that doesn’t count as a developmental disability.

I had to accept this, to surrender to the decision made for me. But I decided not to give up. I am okay with this being a temporary thing, but I don’t want to be shoved around like a cart. I’m a person, after all. I know I don’t fit neatly into one dsablity label box. I am both blind and autistic and have mental health issues.

Over the past week I alternated between fight and surrender. When surrendering, I was depressed and didn’t feel like there’d ever be a place for me. I even pushed my husband away, because I wasn’t sure I could choose between him and proper care. Now I know this is a false dilemma.

When in fight mode, I felt energized. I’ve been making phone calls, thinking up next steps. I have an appointment with my community psychiatric nurse on Monday to discuss how to proceed.

It doesn’t help this wasn’t the first time I fell between the cracks care-wise, but in a way, it does. I know how to navigate the system, after all, and I know not to surrender to a poor quality of life.

I am linking up this post with Five Minute Friday. The prompt this week is “surrender”.

Blind People Should

A few years back, there was a flash blog event that had autistic bloggers all finish the sentence “Autistic people should …”. I think the reason was to counter the hurtful search suggestions that Google made when people typed in “autistic people should”. I was reminded of this event when I read this weeks #theprompt, which is “should”.

I was also reminded of my own preconceived ideas about what disabled people should. A few days ago, I wrote to a disability support group on Facebook about feeling like I was setting a bad example for the disability community because I don’t work and spent years in an instituton. Shouldn’t I have to explain why I can’t work or live fully independently? The short answer is: no.

I was feeling like I should have a disability label to justify my every need because of what I learned whilst being part of E-mail groups run by the National Federation of the Blind, one of the two major organizations of the blind in the United States. This was in the early 2000s, mostly before I’d been diagnosed with autism. What I learned was that blind people, unless they have severe additional disabilities, which I’ll address later, should be able to achieve as much as sighted people do. For example, we should be able to read at the same speed, get around with a white cane completely independently, go to college (I think I picked up the term “college-bound” there), be employable, etc. I can’t do or be any of these things. Keeping the bar of expectations high was the motto of the parents’ organization of the NFB or so it seemed. I always imagined a candy bar put up on a star light years away and me being told to reach for the stars.

Sometimes, when people judged blind children or adults they only knew through newspaper articles not to be independent enough, someone would come up with the get-out-of-jail-free pass: “Maybe the person has additional disabilities?” This is a real possibility, since strangers usualy assume my every impairment is due to blindness despite my additional disabilities, so I assume newspaper reporters are no different. Yet does it matter? Should it? Apparently, sometimes.

In an old (like, late 1990s) issue of Future Reflections, the NFB’s magazine for parents of blind children, a blind adult reported his shame when he crticized parents of blind teenagers for not taking their teens to a seminar on independence. It turned out he was speaking to a roomful of parents of teens with multiple disabilities, so obviously they couldn’t bring their teens. I assume most of these teens had the type of disability that seems to have a monopoly on the term “multiple disabilities” when additional disabilities are involved: severe intellectual disability. After all, when I played the additional disabilities card after my autism diagnosis in 2007, I was told to look up Temple Grandin.

I may sound bitter and I shouldn’t be. After all, I do get the services I need now, even though they cater to, well, people with severe intellectual disabilities. That being said, I know I’m incredibly privileged now to have found my particular care agency, because most others would try to fit me into the mentally ill mold or the blindness mold or any other not-completely-fitting mold rather than looking at my needs.

This all brings me to my point, which is that blind people, autistic people, any kind of disabled people, any kind of people in fact, should not have to justify their needs. We are all human and all different, after all.

mumturnedmom

A Place to Belong

When I saw this week’s Five-Minute Friday prompt on Saturday, I just had to participate. It is hard, because I usually take much longer to write my blog posts, so I kept delaying this post. Here is it. It’s a short one. The prompt is “Place”.

I have always longed for a place to belong. I don’t think I ever felt quite “at home” anywhere. I’m still getting used to that feeling now that I’m in fact home.

I mean, when I was first admitted to the mental hospital in 2007, I longed for a supported housing place to call my home, yet none could be found that suited me. My last psychologist at the institution said this was because I just wanted to remain institutionalized forever. There may be some truth to this, in that I fear independence and in some ways long to be taken care of.

However, another facotr is I feel out of place everywhere. The grass is always greener on the other side of the fence, so to speak.

I am trying to make myself at home now in our house, but I’m constantly worrying that this too will not last. Like, we might be moving to our own home someday withint he foreseeable future. I always said we’d buy the home we now live in from the housing corporation and
I’d still be living here in fifty years. I guess not. This is hard. I hate change and yet, I cannot settle anywhere.

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

If Social Media Dies, Make Soap

Gosh, over a week has passed and I didn’t write. It’s not because I didn’t feel inspired as much. After all, July is National Journal Writing MOnth. So are January, April and October, but I hadn’t heard about NaJoWriMo until late April. This month, I’ve had a prompt delivered to my inbox everyday, but I didn’t feel like writing. The reason is that I am in the midst of a new perseveration. Yeah, you guessed it right, I’ve jumped head first into the soap making craft. On Mama’s Losin’ It, one of the writing prompts this week asks what hobby you’d pick up if social media died tomorrow. This is what I’d do.

I have been making various different kinds of soaps. I do melt and pour soaping, so of course I didn’t technically make the soap myself, but I have tried various kinds of soap for the craft. So far, I like the cheapest kind best, but that supplier takes three to six business days to deliver and I’d run out of soap last Friday. That, plus the SLES that’s in that soap, made me decide to get all-natural soap at another store. I especially don’t like this soap’s pre-melted texture, but once melted, it’s easy to work with. The vendor warned that it may not be the best soap to work with layers with, but I made a layered soap that turned out quite good. One of the colors is supposed to be gold but it turned out yellowish white because I hadn’t shaken up the colorant enough before use. I will look into how to get it to look better.

Layered Soap

I have also tried my hand at body lotion making. The instructions I posted last week, weren’t correct. I made body lotions using a recipe I found online and almost everything went wrong that could’ve gone wrong. Like, I didn’t know that I had to heat the water phase, so I didn’t do this. This meant no or little emusification. The site I got the recipe from is also into all-natural stuff, so they probably deliberately skipped the preservative. Since I made a lotion out of mint tea, that meant it’d gone off within a day. I have decided not to spend any money on this hobby for a month, since I already spent way too much on it so far, so I cannot buy the preservative until then. No lotion making for a while then.

I do, however, greatly enjoy this craft. One of the good parts about it is, of course, sharing my work. I do this on Facebook, so if that died tomorrow, I might not enjoy it as much. Then again, if no-one used social media anymore because it died, maybe I’d connect with other soapers through other venues. Forums and E-mail lists aren’t social media, right?

Speaking of Facebook, however, I did connect with a woman who doesn’t live too far from the tiny village and who is willing to soap with me at home. She’ll first visit me next week. I don’t know whether I could make real connections with people if any online connection for social purposes died. After all, I met all my long-time acquaintances online as well as my husband.

That doesn’t mean I wouldn’t enjoy the soaping craft at all. Maybe there’d actually not be as much pressure if social media didn’t exist, because I wouldn’t know what great soaps other people make. I currently make the majority of my soaps for people I know in real life, too. They’re staff and fellow patients at my institution, so I do sometimes wonder whether I’ll still enjoy this craft when I just have my husband and our tiny circle of acquaintances. We’ll just have to see.

Mama’s Losin’ It

Top Ten Plans for This Summer

It’s (almost) summertime. The weather has been quite good here lately. Particularly last week, the weather was lovely. This week, it’s getting slightly cooler and we’ve had some rain. However, the weather is still good enough to be outside in a T-shirt without a jacket. That’s one thing I love about spring and summer.

One of Mama’s Losin’ It’s prompts for this week is to share your top ten summer plans. I am really looking forward to this summer and I’d love to share my plans with you. Many are the same as last year’s, but unlike then, I did already make some of my plans happen.


  1. Go swimming. This is one of the items on last year’s bucke tlist that I couldn’t cross off then. This year, I’m participatng in a four-day swimming event this very week. I’m swimming only 100 meters each day, which is the shortest distance you could do. So far, I’ve completed two days of the event, that is really five days, already. You only need to complete four out of five days for the medal, but I plan on swimming each day.

  2. Have a barbecue. This is on last year’s list too. I didn’t think that I’d make this year’s barbecue on the institution unit, but now I think I will. It hasn’t been planned yet, but I heard the head nurse say she was going to get the DJ we have each year booked again.

  3. Sit in the garden. My home garden this time. I didn’t know last year of course that this year I’d have a real garden at home. The unit garden is also going to get remodeled soon.

  4. Eat strawberries, blackberries, blackcurrants, etc. I got raspberries from the market last week, but we don’t have them in the garden. The shrub my husband bought died before we could plant it. We do have many other berries, however. I don’t know how well they’ll do their first year, but I already ate a strawberry out of our garden last week.
  5. Go for walks. I walked form our old apartment to the institution a few times last year. This year, our walks have been in the tiny village. I hope to go to the woods sometime this summer too.

  6. Spend time with family. I’ve got to have an item on the list that I didn’t have last year. My sister and my parents are both coming over to our home next week (if my sister can get the day off) to celebrate my birthday.

  7. Eat the head nurse’s French fries and/or macaroni. There’s a nurse who lives in Turkey most of the year who comes over to work at our unit for the summers. It’s a tradition that she and the head nurse make macaroni from scratch once each year. It doesn’t sound that special, I know, but for people who normally get microwave meals everyday, it is. I’ve also heard the head nurse has plans for making us French fries on a Sunday in July. She makes fries about once a month, but usually on Saturdays, when I’m home.

  8. Wear my new dress. I already wore a skirt several times this year. I also bought two new dresses, one of which I already wore. I want to wear the other one too.

  9. Do lots of reading. This was one of the things I didn’t do enough of last year, even though I could. This year, it’s even easier, since I finally got a full Bookshare membership. I plan on reading a few books that I’ve wanted to read forever but never got down to buying as eBooks. Not that I couldn’t have bought them as eBooks, but I was planning on getting a Bookshare membership all along and so delayed getting the books. Reading books in DAISY format is still easier than reading eBooks. Of course, getting them from Bookshare, which is like a library for print disabled people, is cheaper too. I will review the books that I read here too.

  10. Write. I haven’t been blogging here as much as I’d like to this month or last month. After all, I’ve been feeling pretty uninspired. I hope to be inspired soon.


What are your plans for this summer?

Mama’s Losin’ It

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…”.

Being Powerful, Empowered, Mighty: Making My Needs Known

Today, I actually feel like writing about an experience I had this week, when I created my list of support needs and concerns for when I’m going to live with my husband. I particuarly wanted to write about my various ideas on day activities. Then again, I wanted my post to be prompt-based and have some direction and preferably be suited for a linky. Then I saw that this week’s prompt from mumturnedmom is “mighty”. Well, it was quite an empowering experience and a mighty experience at that. I don’t know whether “mighty” means the exact same as “powerful” or “empowered” and I believe these don’t even mean the same, but who cares? I am empowered, I am powerful, I am mighty, for I can make decisions on my care needs.

Seriously though, this is really empowering. After all, up until last week, I thought all responsibility for making this whole living with my husband thing work lay with me, but all control lay with my treatment team. Late last week, I was ranting about this in a Facebook group for people with borderline personality disorder and someone else said just the right things to get my butt moving. Or rather my fingers. She didn’t say much and I can hardly remember what she actually said, but I was inspired to finally start wrting down my support needs and concerns. My psychologist had been pushing me to do this, but I didn’t know how.

The first thing was about medication: who makes sure I get my meds on time, checks when I’ve run out and gets me a new supply from the pharmacy? Can I get a periodic med review with a psychiatrist? Then came concerns about my handling distress: whom to call and when f I’m in distress? What can I do myself? What needs to be done if I end up in a dangerous situation? Then came concerns about activities of daily living like making coffee (which I can do myself), preparing and serving myself food and suchlike. I didn’t have answers to many of these questions in all of these areas, except that i need to get supported day activities.

I E-mailed my list of concerns to my named nurse and was discussing day activities and recreation with her. My husband had made a few suggestions last week, but I was brainstorming with my named nurse too. I reasoned that I’d like to get my day activities from a developmental disability service provider rather than one for mental health, because they are usually more equipped to accommodate multiple disabilities and sensory needs.

Suddenly something popped up into my mind that I’d said to a nurse at my old institution a few years ago: that I’d like to try snoezelen. Snoezelen is a Dutch term with no proper English translation, but it means that a person with a developmental disability is allowed into a room which is equipped with materials to soothe and stimulate the senses. The sensory environment is completely controlable. It is also safe, like with soft walls and such, because most people who use this type of service have behavioral challenges.

I expected my nurse to ridicule me for proposing this, but she completely got me. My activiyt staff, whom I told the next day, said the institution has a snoezel room at the unit for people with intellectual disabilities and I may get approval to try it there. Of course, since this service is usually provided to people with intellectual disabilities, I may not be approved and if I do get approved, I may not be able to get along with the other clients. Well, screw that last one, which was holding my staff at the old institution back: I can hardly get along with most of my current fellow patients either.

Now I wrote my psychologist, but didn’t talk about the snoezelen idea, because I fear she will most definitely ridicule me. She seems so focused on my intelligence and my mental illness rather than my autism and sensory needs, after all. I did ask my named nurse to go with me to my next meeting with my psychologist so that she might advocate for me.

I also discussed my need for day acitivities in various Facebook groups for autism and other disabilities. Other ideas provided were yoga, swimming, trampolining (on a low trampoline) and gardening. My activity staff also said I need multiple activities that I can do during the week. If I end up swimming or doing yoga, I would like to do it at a day activity center, because then the instructors would be more accommodating than when I’d go to a regular gym or pool.

I feel much more positive, much more empowered than I did last week, even though many people or agencies may still get in the way. Like, my psychologist or social worker may refuse to refer me to a developmental disability service. Then again, my social worker said I need to do the meeting with the governnment people who decide on funding myself. These people might refuse to contract a developmental disability agency for me, or the agencies I have in mind might all turn me down. Still, if I don’s stand up for what I believe I need, I won’t definitely get things done my way.

mumturnedmom
Post Comment Love

Fighting My Disordered Eating

“Fight” is one of the writing prompts from Mama’s Losin’ It for this week. The first thing that came to mind as I reflect on this word is my fight against my eating disorder tendencies. This fight has been on my mind a lot lately.

Last week, had a bad binge and then in the evening, a fellow patient gave us cake. A nurse was joking about all the calories in the cake, poking my tummy as she asked: “Do you want whipped cream on your cake?” This was extremely triggering to me. At first, I thought “screw you” and decided to indeed get whipped cream on my cake. As time went by and I ruminated on what had happened, the nurse’s words and actions took on a life of their own, causing me to doubt my will to recover from binge eating. Not that I didn’t want to lose weight, but my initial instinct was to move back in the direction of bulimia by starting to purge again.

I later told the nurse that what had happened had been immensely triggering and she assured me that she’d just been fooling around a bit. Usually, this nurse has quite good ideas for helping me recovr from my disordered eating tendencies, so I took no further offense.

This doesn’t mean the doubts about how to fight my obesity have gone. In fact, the only thing holding me back from starting to purge again is my chronic heartburn, for which I’m getting an upper GI endoscopy done to see what might be wrong. I don’t have that long of a history of purging, but that doesn’t mean that the purging I did do can’t have caused damage. It certainly won’t get better if I resort back to purging now.

However, eating disorders are not just about preserving one’s health. After all, they often do the exact opposite. There is this hierarchy in eating disorders where restrictive anorexics rank as most perseverant and stubborn, followed by binge/purge anorexics, bulimics depending on their weight and the biggest losers (no pun intended) are the compulsive overeaters. In other words, as someone who suffers from binge eating only, I’m a total failure of an eating disorder sufferer. Yet I am not just an eating disorder sufferer, I am a person who happens to have disordered eating tendencies and who wants to fight these tendencies.

This hierarchy of the eating disordered is, however, also reflected in how seriously I take myself and am taken by other people with regard to my disordered eating tendencies. When I still purged, my GP put in my file that I had bulimia. I didn’t – bulimia has very strict criteria that I didn’t meet -, but it was in my records nonetheless. Now that I probably do meet the criteria of binge eating disorder, I’m commonly seen as just a little overweight at best and as an unmotivated, lazy fatass at worst. It’s probably crazy that I’d rather be seen as sick than lazy.

Mama’s Losin’ It