Tag Archives: Blindness

Long-Term Care Assessment

I’ve been wanting to write much more lately, but somehow, I can’t get myself to actually sit down and write. I remember originally posting twice a day almost everyday when I started this blog, and now I’m barely writing twice a week.

I still need to update you all on the meeting with the long-term care funding person. She wasn’t the physician but the one actually making the decision on funding. The physician may still need to contact my psychiatrist in order to advise this person on funding.

She asked a lot about my level of independence in various situations. Like, she asked whether I can cook or clean the house. I was expecting her to ask about much more basic self-care skills like showering. She did ask about those too. I don’t know whether it’s a good thing or bad that she didn’t go into that much detail about my basic self-care. I mean, those are things I at least try to do myself, even though I fail miserably at them. I thought it should be obvious that I can’t cook or clean the house.

The funding person asked multiple times whether I’d had independence training. I couldn’t go into too much detail about that, but I did make it clear that I got tons of it. I also think I explained that the skills didn’t generalize to a new situation, such as living independently.

The funding person said she may want me to get some type of test for emotional development. There is a questionnaire called SEO-R that I think support staff or others involved with the client fill out to determine at what level a client is emotionally. I googled the descriptions of the different developmental stages. In some respects, I would really be like a 6-month-old, while in others, I’m closer to 7 years. I didn’t recognize myself in the most advanced stage, which corresponds to children age 7 to 12. There is probably a stage for adolescents too, but this scale was originally intended for people with mild intellectual disability, who by definition don’t reach this stage. I know the whole concept of mental or emotional age is ableist, but as long as it’s not used to actually infantilize clients, I think there is some use to it.

The intent of this scale being administered in my case is to maybe qualify me for an intellectual disability care profile. The funding person wasn’t impressed with my IQ anyway. I mean, it was measured as being 154 some twenty years ago, but was measured as at least 35 points lower in 2017 and with a ton of discrepancies. Like, I scored high on calculus, but slightly below average on comprehension. Besides, I didn’t say this, but only the verbal part of the IQ test could be administered because of my blindness. I liked it that this person didn’t see me as some sort of genius.

At the end, my support coordinator tried to explain what we’re going to do with the funding if we get it. She explained about the living facility we visited last week. I got a little unquiet at this point, so the funding person offered to talk to my support coordinator on the phone later. She never did. I don’t know whether that’s a bad thing or not.

I’ve been really stressed out these past few days. I dream almost every night about possible outcomes of this assessment. Like, will I get funding based on blindness or intellectual disability? Or will the funding people decide mental illness is my primary disability and deny me funding because I need treatment for that first? And if I get funding, will I get into the place I visited last week? I hope I will, but I’m not getting my hopes up too high yet.

Now my support coordinator is on vacation and won’t be back till the 27th. I think the funding decision has to be made by then. My support coordinator asked me to text her when I heard about the decision, so that she can bring cake if I get approved. Again, not getting my hopes up.

My New Mac: First Impressions

One of Mama’s Losin’ It’s prompts for this week is to write about your most recent purchase. I don’t know what counts as a purchase, but I really want to write about my Mac, which I bought two weeks ago.

I started writing this post on my new Mac. It’s new to me, but it’s the MacBook Air 2017, so I didn’t expect it to be all that advanced. I also didn’t expect to use it much for the first while. I mean, even after fully installing my current Windows PC in July of 2014, it took me two weeks before I started using it and only because I had spilled tea over my old one. Each new version of Windows required me a lot of learning, so I expected that even more with my Mac.

My husband installed it last Saturday evening. I started exploring it and, within an hour, my husband asked whether I could browse the Internet yet. Safari is one of the clunkier apps on the Mac, so I wasn’t expecting it to work. That evening though, I was reading blogs and commenting using my WordPress account. Apparently, I had figured out some basic web browsing on Safari.

The next day, I explored the Mac further and was blissfully unaware of my incompetence with it. That awareness came Monday, when I couldn’t figure out Facebook or WordPress.com. In the evening, my husband tried to make the mail app work with my self-hosted E-mail account (is that what it’s called?). IMAP wouldn’t work, which caused me to melt down. I said I was going to buy a Windows PC the next day and go back to that. Thankfully, my husband talked me out of making any impulsive decisions.

The last few days have been better. I can more or less work any website that isn’t too chaotic, including Facebook. I finally figured out WordPress yesterday too, although I still prefer to type my blog posts on the iPhone.

Today, I spent my time on the Mac figuring out Apple Music. I have a Spotify premium subscription, but for some reason (them being competitors, I guess), Spotify isn’t available in the app store, or at least I couldn’t find it. I didn’t use to like iTunes on the PC, but so far, Apple Music is good on both iPhone and Mac.

I also decided to put my documents on my Mac. I rarely use offline documents nowadays, but I don’t want to lose them either. I have diaries dating back to like 1999 in my documents. Unfortunately, I couldn’t find Dropbox in the app store either, so I had to retrieve my docs from my external hard drive. That’s a lot easier anyway.

I haven’t installed many apps yet. The only apps I installed so far, that aren’t recommended by Apple, are Kindle and ReadKit. I am not using either yet, because Kindle has a visual-only CAPTCHA to register and I would like to sync ReadKit with a feed reader that also syncs to the app I use on my phone. The most sensible choice for that is Feedly, but I have over 100 feeds I’m subscribed to and then a subscription costs like $65 a year. Maybe I could try Feedly with just a few feeds though to see if it works well with ReadKit and if I can use ReadKit like I want to.

As regular readers know, I am blind and so I use a screen reader. One of the main reasons I chose a Mac over another PC, is that the Mac has a built-in screen reader called VoiceOver. I had read up a lot about accessibility before buying the Mac, but there wasn’t much out there about Braille displays, which I use most of the time. Thankfully though, except for the login screen, everything works fine with my Focus Braille display.

There are also a ton of keyboard shortcuts, both general and VoiceOver-based. I love that, but it is a learning curve. For example, when copying my files from my external hard drive to my Mac, I kept trying to press Enter to open the folders and then realized I had to press Command+O. I also keep trying to press Shift+F10 to open a context menu. I don’t know whether there isn’t such a thing or I haven’t figured it out yet.

This review may seem a bit negative, but it isn’t intended as such. Overall, my Mac is definitely useful. I’m pretty sure I’ll get used to it eventually.

Mama’s Losin’ It

#IWSG: Creative Outlets Besides Writing

I have a ton of things I want to write about, but somehow I can’t get myself to actually write. I started trying to use my new Mac Saturday evening. So far, it works but is still a bit hard to use. The WordPress app for Mac isn’t available in the app store, so it is a pain to install. I’m just using my phone now rather than WordPress.com in Safari, because at least I know how to work this.

It’s time again for our Insecure Writer’s Support Group or #IWSG check-in. This month’s question is about creative outlets other than writing.

I must say I”m not terribly creative. I don’t do any artsy things and am no good at music either. No, not all blind people are musically talented! I tried my hand at learning to play the keyboards and guitar for a bit, but didn’t like either. Granted, my guitar lessons were while I was at summer camp in Russia and the instructor spoke Russian and English only. This was before I knew English, so it took me half an hour to figure out what he meant by the “strings”.

If we expand creativity a bit to include crafts, I have tried a ton of them. I started out trying to make cards in 2012, not realizing how inaccessible this craft is to blind people. I should’ve known, since the blindness agency used to offer card making courses but specifically to the partially sighted only.

Then I tried mixed media, which was similarly inaccessible. Then came polymer clay, which should be doable but not by me. I tried to learn to crochet and loom knit too.

Lastly, I tried soap and bath and body product making. I still love that craft and would someday like to pick it up again, but I can’t do it independently. This is when I realized that the problem may not be exclusively with my blindness, but my cerebral palsy affecting my fine motor skills too.

So in short, no, I don’t do any creative things other than write. But I’d love to learn.

Starting My Journey Towards (Hopefully) Going Into Long-Term Care

Last Sunday, my husband asked me whether I had any interesting events this week. I said no, I would just go to day activities and that’s it. Last week, the consultant psychologist on my case called the long-term care funding agency to ask how far they are with processing my application. It’d been sitting with them since Dec 20 and they formally need to finish the process within six to eight weeks. They said it’s on the roll, but that they’d been busy because of the holidays.

Last Thursday, my support coordinator asked whether I wanted to start looking at group homes now while we’re waiting for the funding to hopefully be approved. She had a particular group home in mind which has had an available room for months. I said okay.

She called the group home’s manager and was told I’m welcome to take a tour but to contact the home’s coordinator. Well, to make a long story short, I was invited to the tour yesterday.

This is a home for people with profound intellectual and multiple disabilities. The manager stressed that the current residents all function at a mental age of six months or so. Now I find the whole concept of mental age confusing, probably because I myself function much higher intellectually than emotionally. I mean, obviously I assumed these people can’t talk, but well. I don’t mind.

I drove by paratransit taxi to the home yesterday. It is in a city about 30 minutes from my home. I was told to ring the doorbell if I could find it and else to wait for my support coordinator to arrive. From the need to ring the doorbell, I assumed it’s a locked home. It is. I had already read up on it though and had read that the home has a fenced yard. Otherwise, I wouldn’t have liked a locked place. Like, there’s one my support coordinator has mentioned too in the city my day activities is in too, but that’s on the third floor of a nursing home building. I’d feel like I was in a prison then.

I asked the home’s coordinator why this is a locked home, since I assumed all residents are in wheelchairs. Turns out some can walk and may elope. So do I when in a meltdown.

We started the tour in one of the two living rooms. It had a lovely sensory atmosphere. The coordinator asked, since I arrived shortly past noon, whether I’d had lunch. I hadn’t, so she offered me a slice of bread. I liked that.

Once my support coordinator arrived, we talked about my care needs. I function emotionally at a really low level, which is why my support coordinator had believed this place might be for me. The home’s coordinator understood and liked the opportunity to get to know me.

In the home, you have your own bedroom. You share the bathroom with one other resident. Since most clients use diapers, not all bathrooms have a toilet, but the one adjacent to the available room does. Then there’s a large sensory bathroom with a tub. I loved it. They also have sensory materials to use in the living room or an individual resident’s room.

I didn’t get to tour the yard, but was told there are lots of swings in it, including a cocoon swing like the one I love at day activities. They also have one they can use indoors in the living room.

As for the rules, there are no strict visiting hours. Family are actively involved in the residents’ life. They also have volunteers who go for walks with the residents almost each evening. Sometimes, volunteers cook for the residents. When they don’t, the residents get readymade meals like the ones I got in the mental institution. Once a week, a music therapist comes to the home. It’s a facility which offers treatment, so you get the opportunity for physical, occupational or speech therapy if needed. There’s also an intellectual disability physician and a psychologist involved.

During the night, a staff sleeps in an upstairs room. All residents’ bedrooms are downstairs and there’s no need to go upstairs to find the night staff. Rather, they use technology to listen for suspicious noises in the bedrooms, but the coordinator did say this could be turned off in my bedroom if I were able to phone the night staff myself.

If I get funding for long-term care, it needs to be tweaked somehow if I want to live at this place, because my funding would be based on blindness and this is an intellectual disability facility. Then, the manager, physician, psychologist and all need to agree that I’m the right fit. This includes a risk assessment. The coordinator says this is in case of things like severe epilepsy, but my husband told me to mention elopement.

Of course, I feel internally conflicted as to whether I want this to work out. I’m excited about the facility itself, but still feel like I shouldn’t need this much care. I’m afraid the funding authority is going to agree here.

Once I’d returned home, my support coordinator called me. She had heard from the funding authority physician. The consultant psychologist had already explained my needs, but she wants to see me anyway. That appt is going to be tomorrow at 10AM. I assume this is to validate I in fact have the needs the application says I do. Then, the physician will write a report for the funding decision-maker, I guess.

My support coordinator is going on vacation on Feb 7 and won’t be back till the 25th. She said though that, if my funding gets approved while she’s on vacation and I want to start the process of applying at this living facility, I can do so with the care consultant and my support worker.

PoCoLo

Sorry Not Sorry

Today I am not sorry I suffer with mental health issues. I didn’t choose them, no matter what some people think. I don’t necessarily have a bad attitude – and when I do, it has nothing to do with my mental illnesses.

Today, I”m not sorry I am a trauma survivor. I didn’t choose to endure the traumas I endured. These traumas and the resulting mental health symptoms do not make me weak. They do not make me not resilient. People can be resilient and suffer from mental health issues or trauma-related symptoms nonetheless.

Some people choose to believe that the fact that I don’t live up to my intellectual potential, means I’m not resilient. They reason that, if I were persistent enough, I would have finished university and had a job by now. They also judge my lack of persistence in these areas as a sign of a bad attitude.

Today, I’m not sorry I live with multiple disabilities. I don’t care whether you consider these disabilities valid or not. The people who judge me, think I use my disabilities as an excuse not to fulfill their expectations of me. They don’t realize that it’s my life and I have absolutely zero obligation to fulfill their dreams for me. No, not even when these people are my parents. I have no obligation to prove I am worthy of life.

People who don’t know me well commonly assume I must be very resilient for the mere fact that I’m alive. I didn’t use to like this attitude either, but then I read today’s post by carol anne, which inspired this post. Both of us were born prematurely. Both of us suffer with lifelong disabilities as a result. Both of us endured childhood trauma. Doesn’t the fact that we survived and haven’t succumbed, mean we’re pretty resilient? I think it does. We’re badass!

Queen of Questions (December 7, 2018)

A few days ago, I discovered The Haunted Wordsmith’s Queen of Questions. In it, the author posts a set of questions each day for other bloggers to answer. I badly wanted to answer the questions that day, but didn’t get to do so back then. Now I’m participating for the first time.

1. You have to take the setting from one book, plot from another, and characters from a third to create a new book: What did you take?
I am not that much of a fiction reader, so I really have no idea how to go about this one.

2. What is your favorite candle scent?
Oh, I love love love scented candles! Or rather, wax melts, as candles are a bit risky for me to use. I have a lot of favorites. Now that I think of it, I think my all-time favorite is the Cappuccino Truffle one from Yankee Candle, although Mango Peach Salsa is also great.

3. What is your favorite thing to eat for breakfast?
Yoghurt with crunchy muesli and some fruit in it, especially blueberries. I must say though that I eat this combination mostly for dessert when at my in-laws. For breakfast, I usually eat it without the blueberries.

4. Did you play video games in the arcade? If yes, what was your favorite (pinball counts too)?
No. I have no clue what the arcade even is. I am blind, and back when I was interested in computer games, all the accessible ones were boring.

5. Pool, darts, beer pong, or something else?
Showdown. Not that I like it, but it’s the only remotely similar game played by blind people.

6. What was the last thing you saw that made you do a double take?
I don’t really know..

7. How do you like your peanuts?
Salted but otherwise not coated. I hate the plain ones that you still have to pop out of the shell, because I’m way too lazy to do that.

8. What is your favorite lunch meat?
I don’t particularly like any kind of lunch meat, but if I have to choose, i’d go for salami.

9. Do you believe in magic?
Not really. Sometimes I try to, but it’s more of an entertainment thing than true belief.

10. What song best describes your mood right now?
Dancing Queen by ABBA. Not that I’m dancing, but I feel like it.

Blogging on My iPhone

Man, it’s been so long since I last wrote! I really want to write, but I don’t know what about. I’ve been starting and restarting this blog post a few times. I write it on my iPhone to see if I can get the WordPress app working properly. So far, it seems to work really well. That doesn’t get me out of writer’s block though. 🤣

My husband said on Monday that he believes I’ll buy one more laptop before doing everything on my phone. He says smartphones are the future, so he recommended I try to do most of my work on my iPhone. Over the past few days, I’ve been trying to do this. Not just to satisfy my husband, but also because my rather outdated version of the screen reader on my laptop doesn’t support an increasingly large number of apps. Like, it doesn’t work with Kindle, Adobe Digital Editions (which I used to use for eBooks) or even Firefox or Thunderbird.

So I’ve been trying to transfer my stuff from my computer to my iPhone. I started with books, because my inability to read those on my laptop was frustrating me the most. Now I can read all my books again, yay!

Also, I discovered this afternoon when at my in-laws’ house, that I can actually work my mother-in-law’s iPad without any difficulty. Isn’t it amazing that I can now just use any iDevice without the need to install special software? I wish computers were the same.

I am not sure what else to share right now. It’s still a bit awkward blogging on my iPhone, but I’ll hopefully get used to it real soon.

To Live a Meaningful Life

What does it mean to live a meaningful life? Does it mean to be successful? To contribute to society? I used to think that’s what it meant. I was raised with the idea that, in order to be worthy, you needed to contribute. Many people sitll hold this opinion and it creeps up in my mind every now and again.

Since I’m nowhere near successful by non-disabled standards, does this mean I don’t live a meaningful life? Especially since I used to conform to these non-disableed standards? Until my crisis of 2007, I lived a pretty normal, fulfilling, successful life. Now I seemingly don’t.

I mean, I need considerable care. I’m still not fully convinced that I even contribute to my marriage, even though my husband says I do. I don’t work. I live semi-independently, but this is so hard that I am applying to move into long-term care again. I do day activities at a place for people with severe intellectual disabilities.

Yet if I say this means I don’t live a meaningful life, am I not saying the same of those other people at my day activities place? They don’t contribute to society in any kind of tangible way. Yet they spread kindness and smiles all over the place.

Can’t I redefine meaningful living in a similar way that the National Federation of the Blind wrote a new slogan? They used to say that, with proper training and opportunity, blindness can be reduced to a physical nuisance. They also used to say that the average blind person can do the average job as well as the average sighted person can. This was significantly dismissive of those with multiple disabilities, or those who for any other reason couldn’t contribute as much to society as the average non-disabled person. Now they say you can live the life you want, blindness isn’t what’s holding you back. This is more tuned into the wishes of people to live meaningful lives in such a way that feels good to them. It moves away the focus from the need to contribute and onto the wish to fulfill one’s own dreams. How wonderful!

Linking up with Stream of Consciousness Saturday. The prompt for this week is “Mean(s)”.

Seven Things I Wish My Unsupportive Parents Understood About Me

I just read BPD Bella’s post about ten things she wishes non-borderlines knew about her. I have only some BPD traits and couldn’t relate to everything she describes. However, this post inspired me to do my own list. I’m dedicating this list to my parents by sharing some things I wish they understood about me. For those who don’t know, my parents are particularly unsupportive of my disability experience.

1. I am not “just blind”. I know that many blind people like to minimize the impact of their disability, to prove that they’re competent adults, blindness and all. My mother at one point told me about one of my sister’s college friends, who is blind. She then remarked she wished every blind person had the same abilities. That’s not how it works. But guess what? Sighted people vary in their abilities and difficulties too.

2. My needs are valid. I wasn’t being “manipulative” when I threatened suicide in 2007 while living on my own. I was desperate. If I had really been able to cope, I would have. Similarly, I’m not being “manipulative” by trying to get into supported housing now. No, I’m not in a suicidal crisis on a daily basis anymore, like I was in 2007. However, I want to prevent it from getting that far.

3. If you want me to have a skill, teach me. This is too late, since my parents should’ve gotten this message when I was young. They expected me to be able to live fully independently right out of high school in 2005, though I didn’t have most daily living skills. I appreciate how hard it was for them to teach me growing up, but that’s no excuse to drop the ball.

4. A family is not a business. One of the reasons my parents didn’t teach me independence, was that it got in the way of them running their family efficiently. That’s not an excuse.

5. Not everything is my IQ. My parents are convinced that I am such a genius intellectually that I should be able to use it to overome all of my difficulties (except maybe my social ineptness). Also, this genius IQ enables me to manipulate the world into believing what I want them to believe, which is apparently that I’m weak and dependent and need lots of care. (I am not trying to say needing lots of care makes a person weak and dependent.) No. I would’ve graduated university and gotten a job if I could.

6. Depression is real. Some professionals believe that my childhood irritability stems from depression. I’m not sure that’s entirely true, but it’s possible. I definitely suffer from depression on and off in adulthood. My parents instead say it’s an attemtp on my part to make other people feel miserable, presumably because I refuse to accept the fact that I’m blind. Well, going blind can be traumatic and is not something you “just need to accept”.
Besides, depression is an illness, not a weakness or choice. When depressed, I do make other people feel miserable, but it’s not because I want to.

7. I am an adult, I make my own life choices. In 2006, my parents threatened to abandon me over my wanting to delay university one year. In 2008, they showed up at my hospital ward to take me home with them, because they didn’t agree with the social worker’s plan for my follow-up care. I’m pretty sure that, if I go into supported housing, they’ll try to guilt trip me into not doing it. I couldn’t handle that in 2006. I could in 2008. I am pretty sure that, should they decide to abandon me for good this time, I’ll be able to handle it.

I see this list sounds rather accusatory towards my parents. It is. I don’t even intend for my parents to read it. I know that I’m past setting things straight with them. They won’t change. Besides, my childhood and early adulthood won’t change. I can change to an extent, but I doubt this will lead me closer to my parents. I don’t care.

Struggle #WotW

I want to write so bad, but I’m struggling. Struggling to get myself motivated for writing. Or for anything. Struggling to write coherent sentences. Struggling with my thoughts floating through my mind. Struggling with pretty major depression. I’ve been in survival mode just a bit too long. Now I’m ready to crash.

I am participating in Word of the Week (or #WotW) for the first time on this blog. My word for this week isn’t a shiny, happy one. It’s “struggle”.

This week was an eventful one, yet nothing really did happen. If that sounds like a contradiction, it’s because it is.

Early in the week, it became obvious to me that my depression wasn’t lifting like I’d hoped it would. I mean, I’d hoped that, once my support coordinator was back from vacation and I’d have home support three times a week again, I would feel better. I didn’t. I felt worse.

Thankfully, my support coordinator offered to come by on Tuesday for an extra hour of home support. I am so happy she did, for I didn’t know how else to make it through the day.

On Wednesday, my support worker came by in the afternoon. We ran some errands and I thought I’d do better that day. Not so. In the evenng, when it became apparent my husband wouldn’t be home till past 7PM, I had a meltdown.

On Thursday, I slept in till past noon and again lay in bed for a bit at 2PM. I could’ve been in bed all day, but my support coordinator would be here by 3PM. Thankfully, she was able to motivate me to go for a walk. That was when I decided to start the process of hopefully getting into supported housing. I don’t have my hopes up, of course.

I know that if the powers that be see this post and conclude from here that I’m just struggling with depression, they’ll not provide funding. After all, treatment precludes support. Besides, mental illness only qualifies you for temporary support. So I’m hoping the powers that be will see my needs beyond depression. I’m also blind and have a brain injury and autism, after all.

Interestingly, I had no problem convincing my psychiatric nurse practitioner that I do need 24-hour support. He was one of the first to ditch the dependent personality disorder label I’d been given by my last institution psychologist. As he said when I called him on Friday, I may be a little dependent, but that’s normal because, duh, I’m blind. I’m not sure that’s entirely true, in that to my knowledge most people who are “just blind” don’t need as much support as I do. However, I’m not “just blind”.

The Reading Residence