Update on Day Activities

I have not written a diary-style entry in a while, even though I hoped it’d help me write more often. The past few weeks have been rather eventful with things needing to be worked out for my day activities. Not that anything concrete has come out of it yet, but today, I am hopeful that something will.

In early February, we had a “big meeting” to discuss how to proceed now that my day activities hours were cut and I would maybe have to leave this day center. It was decided that we’d involve the Center for Consultation and Expertise (CCE) to help us detail my support needs. In the meantime, my home support hours were doubled as to give my support coordinator some time to help me find a new place.

My CPN took it upon herself to call the CCE. I don’t know how the conversation between her and the CCE person went, but they concluded eventually that my problem was mainly my blindness. I didn’t understand why, since I’d been almost kicked out of day activities for self-injurious behaviors and meltdowns – not your average blind person’s everyday behavior. The whole thing frustrated me to no end, as blindness agencies have consistently said that my main problem is definitely not my blindness and now the CCE was referring me back to them.

When I read my CPN’s notes on the meeting in which she told me about her conversation with the CCE, I got an idea where the misunderstanding had come from. She wrote about my anxiey regarding demands in light of my having to learn new skills. I figured she’d told the CCE person about the recommendation that I get independent living skills training, which is not the CCE’s department. They offer consultations in situations where the client falls through the cracks because of severe problem behavior, after all. Resistance to demands does not necessarily present with severe problem behavior, I suppose.

When I asked my CPN for clarification though last week, I found out that she doesn’t even believe I have severe problem behaviors. I’m not 100% sure either that my behaviors are severe enough for the CCE, but my CPN’s reasoning for dismissing my problem behaviors altogether was rather strange: I wouldn’t be able to be married if I had problem behaviors. She also mentioned that I wouldn’t be able to live independently in that case either, which I understand. Then again, with today’s budget cuts to mental health and long-term care, once living in the community, you’d need to be virtually dead to be admitted back to an institution. Maybe a virtually dead person is the kind of case the CCE usually works on too, and in all fairness, I’m not dead.

I was badly triggered by my CPN’s comments. What mostly triggered me was her saying that I had “escaped” an institution. I hadn’t. I had been kicked out.

Later last week, my support coordinator talked to my CPN about her feeling that we should at least try to get the CCE involved based on my full story. We worked on the application this afternoon, but didn’t finish it yet, as I was getting overwhelmed.

As for finding me a new place for day activities, we currently have two organizations we’re still in contact with. Both are organizations serving primarily intellectually disabled people. Neither has offered me an orientation meeting yet, but at least neither has rejected me yet. Two other organizations did reject me and several others, we are still thinking on contacting but are most likely unsuitable.

Suddenly I Am

Sometimes, I am the wise woman. Inside, I am a college sophomore, though on the outside, life has moved on. I call myself Clarissa. I can talk up a storm about psychology and psychiatry, arguing that, yes, in fact autistic people can have multiple personalities. It’s a shame people tell me they can’t just because that person’s psychiatrist has told them so. It’s nowhere in the DSM-IV or DSM-5. In fact, autistic people are quite a bit more likely to suffer from trauma-related disorders like this.

Then suddenly, I am that autistic teen. Inside, I am 19-years-old, though on the outside, life has moved on. I call myself Carol. I am not your typical intelligent Aspie. In fact, I am quite severely autistic. I use repetitive language and engage in self-stimulatory behavior all the time. I can barely function at a day activities center for people with severe intellectual disabilities, even though I’m not intellectually disabled. I’m not gifted either, no matter what some people like to believe. I’m just average intellectually, but emotionally, I’m severely impaired.

Then suddenly, I am a little girl. Inside, I’m a shy and scared five-year-old, though on the outside, life has moved on. I call myself Little. By the time I first emerged, it was thought I was the youngest alter. I am not. I can’t breathe sometimes. Sometimes, I have to color inside the lines, and I can’t, because I can’t see very well. I am very scared.

Then suddenly, I am a precocious seven-year-old. Inside, I take care of the baby self (with help from the inner mother figure), though on the outside, life has moved on. I call myself Suzanne. As much as I want to help the baby,I also want my stuffie sheep meh-beh and beh-meh.

Then suddenly, I am that mother figure. Inside, I am 28-years-old, though on the outside, even now life has moved on. I call myself Esther. I sometimes go on Mommy forums as a child advocate, even though in real life, I don’t have any children. I grievethis fact, but don’t let it show.

Then suddenly, I am a childfree woman. Inside, I am 35-years-old, t hough life hasn’t caught up with me yet. I call myself Annemiek. I like to craft and like my childfree life with just my husband and Barry, our cat.

I don’t know whether switching several times a day, like I described above, is common in people with dissociative disorders. I don’t have a diagnosis of a dissociative disorder anymore, after all. To be honest, I don’t care. I have been told, when I write on this blog about my parts, that I’m obviously a really bad case of borderline personality disorder (BPD( trying to fake having dissociative identity disorder (DID). I don’t care. This is my experience and I don’t care what label best describes it.

This is not always how switching happens either. Usually, one of the functional adult parts is out in the body or “in front” about 80% of the time, though it depends which of the functional adult parts is. I didn’t describe either of the two current main fronters in this post.

It is also possible that multiple parts are out in the body at the same time. This can lead to what psychiatrists call identity confusion and also depersonalization and derealization, where you feel as though your body, mind or the world around you is unreal. The switchig I described above is called identity alteration. Then there is amnesia, which is a hallmark syptom of DID we don’t experience that often at all (so I don’t believe we actually have DID).

With this post, I didn’t mean to give you a thorough overview of dissociation. In fact, it was what randomly popped up in my mind when reading today’s prompt on The Daily Post, which is Suddenly. Like I said, I am not claiming that my experience is representative for those with dissociative disorders. It is just a tiny part of my experience, too.

How Our Cat Barry Became Our Pet

This week on Mama’s Losin’ It, the Writer’s Workshop prompts were beautiful. One of them is to share eight things you accomplished in the last week. I may write on that one later, but today, I’m writing on another one, which is to tell the story of how our cat Barry became our pet.

My husband had always recommended that we get a cat to be my companion when I’d go live with him. In the summer of 2013, he had settled in our apartment and hoped I’d soon join him. His mother, who works for the animal shelter, at the time was raising two kiittens, who were too young to be kept at the shelter at only a few weeks old. One o them, the most hyperactive of the two, we named Henk, while the other we named Harry. My mother-in-law recommended we get Harry, the quieter – or should I say less hyperactive? – one.

We got Harry when he was three months old in August of that year. As it turned out, he was rather the slightly less troublesome one than the quieter one of the pair, as he still ran around the house all the time, threw our belongings from tables onto the floor and climbed into and onto furniture.

In the spring of 2014, my husband figureed that maybe a playmate for Harry would help him calm down. His oldest sister, who also works at the shelter, went on the lookout for another cat for us. This became Barry. Yes, we purposefully named Barry this to rhyme with Harry. In fact, my husband half-jokingly gave me the choice between naming him Barry or Heinrich, and I obviously went with Barry.

Harry and Barry didn’t get along very well from the beginning. My husband thought of rehoming Harry to his sister a few times, but often missed him when he was away at hers. So Harry and Barry both moved to our current home with my husband in December of 2015.

The next spring, Barry got a non-bacterial UTI that was most likely stress-related. At first, we thought Barry’s stress came from wanting to go outside and not being allowed to, as he’d go onto the roof and not get off again. This probably was a factor indeed. It quickly becam apparent though that Harry was the main source of stress. While Barry was still recovering from his UTI, Harry started a play-fight with him that was rather bad. This led my husband to finally decide enough was enough. Harry was rehomed to my sister-in-law. She also has two other cats, but they apparetly don’t mind hyperactive Harry and one of them in fact plays with him a lot.

I finally moved in with my husband last May. To be honest, I’m so relieved to just have Barry with us, as Harry was a lot more of a handful. When I first got my iPhone, I worried that Barry would shove it off my table, but he never did *knock on wood*. With Harry on the other hand, I had to pack away all small-enough-to-shove items of value when not using them. That would’ve been quite a stressor to me now that I live here full-time.

Barry was a rather reclusive cat when we first got him and for a long time after. Not the ideal companion for lonesome at home me. Now though, he likes to keep me company even if he still isn’t the kind of cat to like being picked up. He even likes sleeping in our bed at night.

Mama’s Losin’ It

Currently – March 2018

For the first time in many months, I’m participating in the Currently link-up hosted by Anne of In Residence and Sarah of Foxy’s Domestic Side again. This month, the prompts are planning, seeing, making, pretending and wearing. I really love these prompts, so here goes.

Planning: a siblings day with my sister. She called me on Tuesday and talked about going to a spa together someday in June when her husband is in Switzerland for work. One immediately popped up in my mind, but it’s in Nijmegen, which is a fifty-minute drive from my home. The others that are closer by only have swimwear days on Tuesdays, which would be impractical given my sister’s work schedule.

Seeing: sunshine! This morning, while in the paratransit van to day activities, I saw the sun shine beautifully through the front window. The sunny weather didn’t last long though and was replaced by clouds and eventually rain. Thankfully, my day activities staff and I were still able to go for a walk while it still wasn’t raining this morning.

Making: a pineapple banana smoothie. I found this recipe a few days ago on AllRecipes.com I think. It’s made with just banana, pineapple, pineapple juice and ice cubes. I initially planned to buy canned pinapple slices and make this smoothie independently. My husband however said he’d like to help me make it. As it turned out, when grocery shopping with my home support staff, we stumbled upon a fresh pineapple quite easily, so I took that one. I bought bananas that turned out to be still pretty green, so I won’t be making the smoothie till tomorrow.

Pretending: that I’m fine, most of the time. I’m struggling badly with feelings of hopelessness regarding the situation at day activities, but I’m trying to keep a positive outlook. This is terribly hard and often involves pretending.

Wearing: my multicolored vest. I bought it many years ago and wore it for a while, then gained so much weight that I couldn’t anymore. Since having lost 10kg in the past nine months, I’m now able to wear it comfortably again. Or somewhat comfortably, as it itches a bit. I get a lot of compliments on it and apparently it makes me look slimmer than I am.

What have you been up to lately?

Seven Things to Do More Often

Seriously, I’ve been wanting to write more often. Writing helps me, or it used to. Also, it’s not that I’m uninspired. A dozen ideas to write on float through my mind, but once I sit down to actually blog, it seems all pointless. Today I feel relatively well mood-wise, so I’m just forcing myself to write. I am choosing to write for Mama’s Losin’ It’s Writer’s Workshop on the prompt of seven things to do more often. There is also a prompt to write on seven things to do less often, but I couldn’t think of that many things to do less frequently.

1. Write. This I explained above already. Writing used to be a way of helping me process stuff and at the same time a way of distracting me from my depressive thoughts. Now already for nearly two years, I seem unable to write as often as I used to. Whether depressive symptoms are the cause or the effect, I do not know.

2. Move. Last week, I finally bought myself a Fitbit activity tracker. It’s a cool gadget, but so far, I’ve not been able to get moving nearly enough to meet the recommended targets. For example, I average about 3000 steps a day, while 10000 is recommended.

I don’t think my depressed mood is the reason I’m not moving. I just don’t think I can find the opportunity to. I mean, I shouldn’t go running up and down the stairs for fun, should I? And since I can’t leave the house without assistance, going for a walk is rather hard. The weather lately obviously hasn’t helped, as it’s freezing and feels even coldre. I hope that, once the temperature rises, I can get my support workers to take me on some walks again.

3. Meditate. I have two meditation apps on my iPhone but havent’used them in weeks. I really would like to practise mindfulness more.

4. Do sensory-friendly activities, like melting a wax melt or listening to soothing music.

5. Read. I don’t just mean books, but blogs too. I after all don’t seem to have the attention span to read a book most of the time, but I can usually read blog posts.

6. Show my love to my husband. This has been hard lately because of my depressed moods.

7. Focus on the positive. I really want to seek out emotionally positive experiences more. The above six practices will help me achieve this. If I can appreciate positive experiences for what they are, I’ll hopefully feel even better soon.

Of course, these seven things won’t magically make me feel happy, but they will help me move in that direction. Depressive symptoms and inactivity make each other worse, after all.

Mama’s Losin’ It

Detailing My Support Needs

Last week, I wrote about wondering why I seem to have high support needs. The painful truth is, I may never know the answer. After all, most neuropsychological tests that would show executive dysfunction, performance IQ tests and such cannot be administered to me because I’m blind. Even tests that can be administered may not show my actual performance in daily life, because a one-on-one testing situation is different from for example day activities in a group.

In 2013, we had the Center for Consultation and Expertise (CCE) write out my support needs in order to hand those to the local authority once I’d leave the institution so they could decide on care funding accordingly. All my needs were written down really vaguely, particularly those for day activities. I needed a place where I could do creative activities for at least four mornings a week. No detail was given to how much support I’d need doing those creative activities.

As it turns out, the CCE is unwilling to even see me again, as they judged from a phone call with my community psychiatric nurse that the main problem is my blindness. As such, I guess no-one will ever be able to help me detail my support needs, so I am going to write them out myself here. I will include the supports my husband provides me.

During a week day, I can get up, shower and dress myself without assistance. Usually, I eat yoghurt with muesli for breakfast, which I can prepare myself with some difficulty. However, when I spill food doing so, I usually either don’t notice or don’t remember or know how to clean it up. This is a source of irritation with my husband, as he doesn’t know whether I’m just too lazy to clean up after myself or there’s some genuine issue preventing me from doing it. I can’t put my finger on exactly what the issue is either, at least not when I do remember that I need to clean up. When I forget, I honestly don’t know what the issue is either, as I am not known to have a bad memory according to tests. All I know is that all the “rules” that I have to remember regarding proper cleaning up, feel incredibly overwhelming.

I take my morning meds without reminders, but my husband has to put them in my medication box. He does this once a week. My evening meds, I often forget even with a reminder. I have set an alarm at 8PM on my phone for them, but when I can’t drop what I’m doing at that moment and run right to my medicine box, I often forget to take them later.

I have finally learned within the last year to brush my teeth without reminders each morning and evening. I still have an aversion to the feel and taste of toothpaste, but have learned to tolerate it now, though I can’t manage to brush for two minutes. I often spill toothpaste everywhere. I do try to clean it up, but often I don’t see where I’ve spilled the toothpaste (on my face, my clothes, etc.). My day activities staff often remind me to clean my face and sweater even though I’ve tried to before leaving for day activities.

I arrive at day activities at around 8:45AM. Usually, the cab driver or a day activities staff helps me to my group’s room, though I think I could navigate the building independently if I really needed to. My day activities staff gets me a cup of coffee. At home, I can make a cup of Senseo coffee myself.

At day activities, I run into several different issues. First, I find it hard to decide for myself what I’m going to do when it’s free time or the staff are busy caring for another client. When I have something to do, for example an activity on my phone or a sensory activity that I can do independently, I’m usually fine unless I get distracted, ovelroaded or frustrated.

I can navigate my group’s room and the day center with some assistance. For example, when I need to go to the bathroom, I can usually find it by myself but need some assistance when for example someone has moved the toilet paper. I can sometimes go to the snoezelen (sensory) room independently, but usually a staff takes me there so they can see if I can find all the supplies I need there. At home, I move through the house without any assistance and without my white cane. I cannot navigate the backyard though and after nine months of living here still need some directions finding my way to the front door from the cab or my husband’s car.

My husband prepares my lunch for me, as this is bread with sandwich spread or peanut butter, which I can’t prepare myself. I need no other assistance during lunch time. During dinner, my husband puts the food on my plate. As of this week, I have a curved sppon, but I’m as of yet undecided as to whether it is easier to eat with it. I still spill a lot of food. Regarding drinking, I can sometimes pour myself a soft drink (depending on the weight/size of the can). I can if I really need to make myself a cup of tea, but for safety reasons I prefer to have tea only when my husband or support staff are with me. I can get water independently, but often forget to drink enough of it despite my husband having given me a one-liter bottle.

My husband cooks and does the cleaning. I sometimes, when I spill something in my own room, try to clean it up, but I tend to at least feel rather awkward doing so. I don’t have any idea as of how often to clean my room or whatever. This again annoys my husband, as he says I can do it.

The hard part is, I learned to do a lot of the things I now need assistance with independently when I was in blindness training from 2005 to 2007. It may be tempting to say the problem is my blindness and I just need more training. Here we come back to the beginning, which is that for whatever reason, it feels completely overwhelming, but I don’t know why.

Spectrum Sunday

Considering Getting a Psychiatrist’s Appointment on My Depressed Mood

Tomorrow, I have an appointment with my community psychiatric nurse (CPN). Part of our appointment will likely be about where to go from here regarding day activities. My CPN already E-mailed me that she’d contacted the Center for Consultation and Expertise. They will hopefully take on my case and help me and my staff assess my needs. That will hopefully help us find a new place or get me the right support at my current place.

I also intend to ask her to get me an appointment with my psychiatrist. I feel too embarrassed to schedule one through the secretary. It’s been 3 1/2 months since my last appointment, so in that sense I could request one just for a catch-up. However, I want to discuss something specific with the psychiatrist and I feel incredibly ashamed of it. I’m finally coming to the conclusion that my depression symptoms are getting worse and to a point where I don’t know how to handle them anymore.

I was more or less by chance diagnosed with major depression last year. This came to light when I had my autism-related independent assessment. I had to fill out a screening tool for depression as part of the intake procedure. I scored as severe on that one. I was then evaluated further and was diagnosed with recurrent moderate depression. Because this was an independent assessment, my psychiatrist isn’t affiliated with this hospital and doesn’t need to take over the diagnosis. I don’t know whether she has.

I do take an antidepressant and have since 2010. Same medication, same dose all these years with no med review whatsoever. I don’t even know for sure why I was put on this medication, except that my Abilify (an antipsychotic) had been increased twice in a few months and I was still irritable.

This is the main reason I feel embarrassed about asking my psychiatrist to evaluate my mood. I mean, irritability bothers other people and ttat’s always been the main reason I was in care. Like, in 2007, when I was admitted to the mental hospital, it was really because of suicidal ideation but my staff always said it was because I’d been having public meltdowns.

I don’t know whether I truly believe that psychiatry’s job is to keep people, or me specifically, from being a pain in other people’s asses. I don’t think it should be. However, I’m rather afraid that my psychiatrist thinks so at least in my case. I’m not exactly sure why, as so far she’s been pretty understanding. I guess they may be left over feelings from all these years being treated like a cumbersome waste of resources.

Keep Calm and Carry On Linking Sunday

Friendly Fill-Ins #1

A few weeks ago, I discovered the Friendly Fill-Ins linky hosted by 15AndMeowing and McGuffy’s Reader. I loved the idea but wasn’t inspired to write then. Today, I rediscovered the linky and the questions were rather interesting. Therefore, I’m participating now.

1. My Chinese zodiac animal sign is Tiger. I don’t know anything about Chinese astrology, so I googled it. They are said to be independent, courageous and powerful but arrogant too. I can see how that applies to me and definitely how it used to apply to me before I was institutionalized. Tigers born in June, like me, are said to have a life that twists and turns around a lot. That’s so true for me too. They also may be ambitious but won’t achieve their goals without support and financial resources. Those born on the 27th, like me, are said to have the perfect husband (or wife).

2. My zodiac sign is Cancer. The Cancer personality also definitely applies to me. That being said, I was born prematurely and should’ve been a Libra. I don’t believe in astrology, so when I read my horoscope and Cancer doesn’t seem to fit, I look at Libra.

3. Income tax season is confusing. I hate having to file for income tax, so I usually have my husband do it for me. Once, in like 2009, I filed for income tax for three years at once, since I hadn’t done this the two previous years. I wasn’t required to, but got a lot of money back when I finally reported my income.

4. In hindsight… Well they say hindsight is 20/20 but I’m still unsure about many decisions I made in the past. Usually, I know that I made the wrong decision but don’t know what the right decision would’ve been. I try not to dwell on regrets, although this is pretty hard.

Do you relate to your astrological sign?

Are My Day Activities Challenging Enough?

Last night, I was flooded with memories of elementary school. I attended a school for the blind that was next to a school or institution or whatever for people with intellectual disabilities from fourth to sixth grade. The school for the blind I went ot also had a departmnet for those with “multiple disabilities”, which referred just to visual and intellectual disability. I mean, I attended the single-disability department even though I’m autistic and have a mild otor impairment in addition to blindness. Of course, no-one acknowledged that. Besides, like I said, “multiply-disabled” always somehow includes an intellectual disability.

I remember when our teacher told us about snoezelen. Snoezelen is a type of sensory activity where the person with a disablity goes into a room where the sensory environment can completely be controlled by that person or their staff. It struck a chord with me as soon as I heard of it. Now, more than twenty years later, it’s one of my favorite activities at the day center. It is usually catered towards people wiht severe intellectual disabilities.

At around the same time, a girl was in the news who was being restrained long-term in an institution in Utrecht. She had a mild intellectual disability, so mild that she had two years previously been able to attend a low-level high school. She was judged to be too intelligent for intellectual disabilities services but couldn’t be served adequately anywhere else. She was eventually transferred to a psychiatric institution for youth with intellectual disabilities.

This story struck an enormous chord with me. I knew I wasn’t intellectually disabled, but my school didn’t think I was very bright either and above all, I had significant behavioral challenges.

It’s a shame that, more than twenty years after this girl was in the news, still, disability services are so segregated according to IQ. I am hugely lucky that I’m allowed to use the snoezelen room and even attend the group for the most severely intellectually disabled people at my day center. My recent outbursts do get people to believe this wasn’t the right decision after all. My home support coordinator said this afternoon that, if I could be moved back to the industrial group, I may’ve been able to stay at this day center. I doubt it, since at the industrial group, I had more outbursts than now that I’m at the sensory group.

I remember being told about snoezelen once more, during a college lecture when I took applied psychology. The professor told us about it being suitable to those with end-stage Alzheimer’s or other forms of dementia. Again, not a positive image of this activity as soothing for people with any kind of disability (or no disability at all).

When I tell people about my problems functioning at day activities, I invariably hear that they’re not challenging enough for me. As much as I’d like to deny this, there is some truth to this. Indeed I get understimulated when I have to sit in a chair for twenty minutes while the other service users use the bathroom. Not that I think the others are particularly excited having to sit on a toilet for that long, but they can’t tell the staff that they’re bored. I also don’t know that I could use the snoezelen room for hours on end. Yesterday, I spent about an hour in it and that was fine, but the other service users and staff were there too. When I’m just dropped in the room alone, I manage for twenty minutes at most.

The problem is though, as much as I’d like to do more challenging activities, I need practically one-on-one support with that and that’s just not possible. The staff/service user ratio at my group is 1:6. At the industrial group, it’s 1:9. That’s just not working if I’m wanting to do any type of remotely challenging activity except for using the computer, which quite frankly I can do at home, too.

I wish I were more independent. I wish snoezelen wasn’t the only activity I can do without help. My sister said maybe I need training to learn new skills. Well, I don’t know where to go for that.

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

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

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

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

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

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

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

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

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