Prepare #ThePrompt #WotW

We got new carpet in my husband’s and my apartment yesterday. It is one item ticked off our list of things we needed to get done before I’d move out of the institution and in with my husband. Not that I need new carpet myself, but it’d be great if all refurbishing in our apartment is done before I move in. The cats did need new carpet, because the type we used to have was hard to clean.

This week’s prompt over at mumturnedmom is “prepare”. In honor of this, I will be talking about the other things we need to get done for me to move in with my husband. I’m also choosing “prepare” as my word of the week.

First, there are the adjustments we need to make to our apartment. We already got a Senseo coffee brewing system, or at least a system which uses coffee pods. This makes it easier for me to make coffee, because, though I used to be able to work a regular coffee maker, I find ours quite hard to operate. We also got an electric stove, so that I can cook with some help myself. The laundry machine and microwave still need to be labeleed for me to operate them.

We got me a new desk for in the living room. My husband has his own study, but the tiny room that was meant to be my study is taken up by the cats (by my choice). The couch still may need replacement too.

Then there are the arrangements we need to make for my home care needs to be met. In this respect, we’re not yet going anywhere. We got a letter with recommendations from the autism center this week, but my psychologist didn’t agree with most of the recommendations. The center recommended I get an autsim-specialized coach involved to determine my needs for care and help me learn independence, but we aren’t yet sure whether any of the coaching agencies they mentioned are contracted for care by our local government. They also will most likely only be able to provide scheduled services, and that won’t meet my needs.

What I need most, after all, is someone to be available for support when I need it and my husband is at work. My husband works irregular hours too, so office hours are not enough. Ideally, the support worker would be able to come out to my home on occasion if I were in a really bad condition, but most times, phone support would probably be enough. The care officer with the local government didn’t say whether this is a possibility. She only said we can get at most three hours of care a day. She meant direct care, so that’s quite a lot.

My psychologist is considering getting the mental health supported housing agency and the assertive community treatment team involved. Both are not autism-specialized but do provide on-call support. I haven’t yet heard whether she has been able to contact either of these agencies yet.

Before I move out, I need to practise being at our apartment when my husband is at work. I haven’t yet been able to do this. I need to discuss taking this step and actually take it soon.

I have been setting a goal for myself. My subscription for mobile Internet access on my laptop expires in late May, 2016. I have a goal that I want to be living with my husband by then. It’s not that I can’t renew my subscription, but it’s just, I want to move out so badly and having a clear date in my mind helps me stay focused.

mumturnedmom
The Reading Residence

Those First Five Pounds

As regular readers of this blog will know, I am quite overweight. In fact, I need to lose about 30lbs to be at a healthy BMI. Thankfully, I haven’t gained any weight in the past eighteen months, but I haven’t lost any either.

One of this week’s prompts over at Mama’s Losin’ It asks me what is sabotaging my plans of losing five pounds. Though five pounds isn’t even enough to get my BMI under 30, every journey of a thousand miles starts with a single step. So what’s keeping me from losing those first few pounds?

Let me for once not go into the details of my disordered eating habits. I have written many times abut my tendency towards emotional eating and bingeing, but this does not seem to be the only factor keeping me from dropping those first five pounds. Of course, weihgt loss requires self-control, and this is exactly what I lack during a bingeing episode. However, doesn’t everyone have times when they lose control over themselves? Also, I’ve not binged in a few weeks and yet haven’t lost any weight. Could it not be the simple habit of eating too much over an extended period of time and not getting my butt off the chair that is truly keeping me from losing any weight?

I don’t check food labels when I get something to eat. I don’t count calories. Now I’m not advocating obsessing over calories, but some awareness is essential for weight loss. I habitually think that foods are less calorie-rich than they actually are. This doesn’t just go for binge foods like candy, where I can easily exceed 2000 calories in one binge. I was shocked one day when my husband and I went to McDonald’s for lunch and I had downed 1000 calories with what I considered a small meal. Like, a burger, small serving of fries and a small milkshake. Yes, I do know milkshakes are not healthy, but I seriously didn’t know they were that high on calories. My husband warned me that I shouldn’t eat 1000 extra calories everyday or I’d gain over 100lbs in a year. The truth is, I probably exceed the number of calories I burn by at least 500 almost everyday.

I also don’t exercise nearly enough. I get fitness-focused physical therapy once a week and go to the gym once a week for 45 minutes. That’s not enough. In addition, I should be going on the elliptical or stationary bike at least twice during the week. I did this faithfully for a while, but have been too lazy to do this lately. I do go for walks, but not as often as most people do.

Now that I review this post, it’s a miracle I am not over 200lbs already. I went to the gym this morning, so I’m not sure it’s healthy to go on the elliptical now. Then again, I didn’t disclose how much I ate today and am not going to go into detail on it either (hint: 720 calories for lunch). It’s too bad writing about weight loss won’t get me to drop those extra pounds.

Mama’s Losin’ It

First Steps Towards Independence: Blindness Rehabilitation in 2005

This week on the spin cycle, we’re discussing firsts. Last Friday, I visited a woman I first met at the blindness rehabilitation center in 2005. Another guy we both met there too also came over. This was my first time meeting them since I graduated from the rehabilitation center.

The rehabilitation center experience was quite interesting. I had just graduated from high school two months earlier and didn’t want to go straight to university. So in order to have some practice on my first steps towards independence, I became a resident there four to five days a week for four months.

The program was quite intensive. I had orientation and mobility training, occupational therapy, physical therapy, music, textile arts and handycrafts, as well as three different types of communication training and counseling with a psychologist. I also had vision therapy.

During orientation and mobility training, I learned to plan to go someplace and to travel there effectively using my white cane. I learned to be quite a good cane traveler even though I’d always had trouble using the cane correclty, and still do. After about six weeks at the center, I started using public transportation to go there on Monday and to travel back home on Thursday or Friday. I also learned to travel to and from the local supermarket and to use customer service to get my groceries.

Occupational therapy had several components to it. First, there was the teaching of housekeeping and cooking skills. I didn’t yet master these when I graduated from the center, so went on to live at an independence training home afterwards. Another part of occupational therapy was group-based training in compensating for our visual impairment with our other senses. This, for me, was quite easy in the practical sense, but my social skils difficulties emerged there. There was one great workshop on applying make-up without sight. I loved it.

I also had physical therapy because I have poor posture and had developed mild scoliosis as a result. Physical therapy wasn’t all that effective, because I didn’t practise the exercises out of session.

Vision therapy was very interesting. At first, I had a vision therapist who didn’t acknowledge my admittedly tiny fraction of residual vision. When at one of the communication sills training sessions though, another vision therapist joined the trainer and I arranged for sessions with her. My vision was still virtually non-existent, but I learned a lot about what I could and couldn’t do with it. I also had an opportunity to select NoIR sunglasses that would help me cope better with my light sensitivity. This vision therapist was very patient and thorough in answering my questions. Though in the end my emotional adjustment problems surfaced, which of course she wasn’t trained in dealing with, I did feel very much validated.

Music, textile arts and handycrafts were quite useful too. Though I didn’t practise what I learned there for another few years to come, the instructors there taught me that I could indeed do arts and crafts with no vision. Music wasn’t my cup of tea, so I stopped playing the keyboards after graduating from the center.

The communication skills training sessions were great. I took basic communication skills, assertiveness and communication about your visual impairment. I had one trainer for both basic communication skills and assertiveness and another for the communication about your visual impairment training. The first one was great at letting me see that, if I moved past my anxiety, I could be quite sociable. The second trainer was the one who cooperated with the vision therapist.

Counseling was the least useful bit about the rehabilitation program. The psychologist was blind herself and for one thing didn’t grasp my emotional adjustment issues. She focused on the fact that I had to put non-disabled values into perspective and for example learn to ask for help. Though I did accept this eventually, I still couldn’t cope with the many losses of vision loss. I don’t think a four-month-long rehabilitation program is enough for that anyway, as I still don’t fully accept this ten years on. However, the other problem was we just didn’t click in terms of communication styles. I didn’t open up easily and there just wasn’t enough time in the program for me to work on even just those issues that are due to blindness. I understand that, but the psychologist could’ve refrained from rushing me through a dozen issues.

I was a residential client there even though the rehabilitation center was in my home city. In the evenings, the clients spent lots of time amongst ourselves discussing our rehabilitation process. This was very healing to me. It also was a great opportunity to practise social skills.

Even though my rehabilitation was supposed to be my first step towards independence, I was in many ways at my highest point in terms of independence while there. I don’t like to admit this, since I did learn other sklls in the ten years since. Also, the fact that I didn’t become more self-reliant makes it look like I just need a kick in the pants. In fact, however, the program had lots of one-on-one instruction incorporated, which I can’t get now that I’m a mental patient. I still grieve this loss of independence, but this possibly has to do with my adjustment to my psychiatric illness.

Ten Things I Like About the Netherlands

Flag of the Netherlands

One of Mama’s Losin’ It’s writing prompts for this week is to list ten things you like about your state. I tried listing things I like about my province, but it’s proving too hard to write about Gelderland in English. Therefore, I’m cheating a bit and writing about my country as a whole. After all, a U.S. state is often larger than the entire country of the Netherlands.

1. The landscape. This is something I particulalry like in the province of Gelderland. The landscape here consists of woodlands, hills and rivers. In the western part of the Netherlands, many areas below sea level have been man-made. These areas are called polders. I was born practically in the Alexander Polder in Rotterdam, which is the lowest point in the entire country, being six meters below sea level. Most people who are not from the Netherlands like the polders better than the hills and woodlands of Gelderland.

Wadden Sea
By Uberprutser (Wikimedia Commons)

2. The Wadden Islands. I could’ve included them above, but I like them in particular. These are a set of islands north of the mainland. My parents, sister and I would often go on vacation to Vlieland. I loved the dunes and beach of Vlieland, but the island also has some forestry.

3. The politics. No, I dn’t like the Dutch government, since it’s led by a conservative prime minister who gets his way in every area. Labor is on the government too, but they are fake lefties anyway. What I like about the Dutch politics is that small parties like GroenLinks and the Socialist Party can get onto the parliament too. Of course, this does mean that the Christian right gets on the parliament too.

4. The climate. Dutch people tend to think it’s typcal of the Dutch to complain of the weather, but I believe this is a universal way of starting smalltalk. We have a little of all four seasons, though fall always seems to last the longest. I particularly like the springs and summers here and like the occasional day of snow in winter.

5. The values. The Netherlands is considered extremely liberal by American standards. Most people are irreligious and don’t shove their beliefs down your throat. Though I am a Jesus follower and like to participate in American-based Christian culture sometimes, I like to retreat to my little, liberal church too. The Dutch are usually tolerant, though this has gone down a bit since 9/11 and the emergence of first Pim Fortuyn and then Geert Wilders and his Freedom Party.

6. Social security. It’s pretty good here compared to the United States and even most of the rest of Europe. I get around €770 a month. People not in institutions get more, but they substract my long-term care copay. Many benefits are income-based, which is good sometimes for me but not so good at other times because my husband has an income too. However, generally speaking, the Dutch system is mostly egalitarian despite almost fifteen years of right-wing governments so far. I like that.

7. The health care system. The Netherlands maintains a number one position in the European Health Consumer Index, which measures quality of health care systems. Though health insurance was liberalized a bit with the 2006 Health Insurance Act, health insurance is mandatory and usually quite affordable. The government decides what is covered in the basic package, which is the mandatory piece of health insurane, and people can buy additional coverage (with insurers being allowed to refuse them or raise premiums based on pre-existing conditions). The Long-Term Care Act went into effect in 2015 and covers institutional care. For community supports, local governments decide who will be eligible.

8. The educational system. Though we aren’t as much of a knowledge-based economy as the government would like people to believe, education is usually quite good and a lot more affordable than in the United States. College tuition, unless you take longer than usual to graduate, is about €2000 a year. Elementary and secondary education are free until you’re eighteen. We do have a few expensive, private schools, but not nearly as many as other countries do.

9. Music. Though I don’t care for famous Dutch singers such as Frans Bauer or Marco Borsato, I do like music sung in dialects. My parents live in the province of Groningen and I love listening to music from that province.

Máxima
By Oliver Abels (SBT) [CC BY 3.0 (http://creativecommons.org/licenses/by/3.0)%5D, via Wikimedia Commons

10. Queen Máxima. No, that’s a joke, but I couldn’t think of anything else. Most people in the Netherlands at least used to adore the queen. She isn’t head of state, as her husband Willem Alexander is, and this probably gives her some extra cuteness.

Mama’s Losin’ It

Blue

Blue

Blue is another favorite color of mine besides green, which I discussed on sunday. Blue, in my experience, can signify many things. It is thought of as a cool color and we often say we feel “blue” when we feel sad. However, the skies are usually a bright color of blue in summertime, too.

If I have to select a color that signifies my personality, it’d be blue. My Myers-Briggs personality type is INTJ bordering on INFJ. The letter T in my synetsthetic experience is a dark shade of blue. What distinguishes INTJs from the INFJ personality type is INTJs’ cooler personality. Again, blue is thought of as a cool color.

Interestingly, when I was in college, I had this competency management book that described various personality types. I just looked it up and saw that introverted thinkers are described as the “blue” type.

People exhibiting the “blue” behavior pattern (or conformity) in work-related situations, according to the book, have perfectionism as their basic emotional state. They have high discipline, are detail-oriented, good observers and painfully conscientious. They need solid, fact-based arguments before they swallow an opinion. They are also obsessed with rules and regulations. They don’t do well with emotions and definitely don’t show them.

I do not currently score high on any of the behavior patterns described in the book, mostly because I cannot hold down a job so don’t have any work-related competencies. However, when I was still in school, I’d be painfully detail-oriented and rigid. I actually had to be taught that I could get away with not doing my homework every now and again. Though it would be a little exaggerated to say my parents taught me to flake out of doing homework, they did truly teach me that I couldn’t remind the teachers of upcoming tests.

Sky

In many ways, as you can see, I’m a blue personality. The same holds true if I have to describe my personality as a state of weather. Though sometimes it’s a thunderstorm, most of the time it is a blue sky with some clouds. That is, I am usually slightly depressed but not so seriously that it’s a problem. I have my sunny days and my stormy days, but my basic affective state is a lighter shade of blue.

This post was again inspired by a writing prompt from 397 Journal Writing Prompts & Ideas by Scott Green. The prompt was to describe one color that would signify your life.

The Color Green

Green

I have not been totally blind all my life. In fact, I could see some colors until I was around seventeen and still have grapheme-color synesthesia. This means that I see colors on the letters and numbers that I read on my Braille display.

The first colors I was no longer able to distinguish were green and blue, even though I have a vivid understanding of both colors in my mind now. I was about eight when I lost the ability to tell green and blue apart. Then, at around age twelve, I started seeing darker shades of green as black. For example, in summer, trees would appear black to me. This was one of the saddest experiences in my journey towards total blindness.

One of my favorite colors is green. Though I have a vivid memory and imagination of what it looks like, it’s hard to describe what green is if I had to describe it to someone wo was born totally blind. The fact is, after all, there is no way of perceiving colors except through sight. I, having had some sight as a child, can visualize what a color looks like when someone gives a description, whether that visualization is at all correct or not. Someone who was born totally blind, cannot visualize anything. Their brain just isn’t wired for it.

If I were to describe the color green to a totally blind person, I could of course name things that are green. I could say grass is green and trees are green in summertime. Green, in fact, is a color often found in nature.</P

I could tell them what feelings I associate with the color green. For example, green reminds me of a feeling of youthfulness, of fresh energy. Green, with its prevalence in nature during spring and part of summer, reminds me of the weather getting warmer. I don’t personally see green as a cool color, though many people do.

I could describe what colors I feel go well with green in clothing or the like. I for one happen to love the combination of green and blue, though I was once told when I wore a green and blue jacket to school in fifth grade, that the colors bite each other. I also love green with purple, pink and of course red. I don’t care for the combination of green and yellow or orange. Then again, these are personal opinions.

I remember once reading a book by Dutch comedian Vincent Bijlo, who is blind, in which the totally blind protagonist met the former tenant of his room. She told him that the walls were painted pink. He was in love with the woman so he said he liked pink because she did. This signifies the fact that blind people associate colors with the people and situations in which they hear about these colors. Pink is not a typical men’s favorite color, and blind boys may be raised with this idea. The man in Bijlo’s book clearly wasn’t. He had absolutely no concept of color, but he liked the color pink because his crush liked it.

Of course, it is useless to try to convey the actual image of color to a totally blind person. That doesn’t mean that blind people shouldn’t learn what color common objects are or what colors go well together in clothing. They may not be able to conceptualize colors. This however is also true of those who become totally blind later in life. I may be able to imagine what a color looks like, but I will still need to have sighted assistance for matching colors of clothing, for example, because the nuances of colors aren’t easy to describe. This is one reason why I usually wear black.

This post was inspired by one of the journaling prompts in 397 Journal Writing Prompts & Ideas by Scott Green. The prompt was: “If you were to describe the color green to a blind person, how would you do it?”

Stopping at two

Anxiety

One of the Friday Reflections prompts for this week is to write about anxiety. How does it affect me and what do I do to cope? I will write here about my experiences with various types of anxiety. It ties in nicely with last Monday’s post, in which I share tips for relaxation. However, throughout this post, I will share some coping strategies that have and haven’t worked for me too.

In the psychiatrist’s manual, DSM-5, there are various types of anxiety disorders. Now I don’t have a diagnosis of any of these disorders, but they are a good reference point for the various types of anxiety that people may experience.

Generalized anxiety disorder (GAD) is a condition in which a person feels anxious or worried about a variety of situations. This worry is accompanied by a feeling of restlessness, fatigue, difficulty concentrating, irritability, sleep disturbance and/or muscle tension. Generalized anxiety disorder often co-occurs with depression.

Though I haven’t had a diagnosis of GAD, partly because my owrrying can be explained by my autism, I have been a chronic worrier all my life and experienced many of the associated symptoms I mentioned above. Antidepressants can help this type of anxiety and in fact are more effective for GAD than for depression. I have been taking the antidepressant Celexa since 2010 with moderate success.

Some people worry about specific things happening to them. For example, I have a lot of anxiety about getting a serious illness. This is called hypochondria or health anxiety. In the psychiatrist’s manual, it is classified as a somatic symptom disorder rather than an anxiety disorder, but the symptoms overlap with those of anxiety disorders. Some doctors have tried antidepressants for health anxiety and documented significant improvement in their patients. It is also commonly thought that people’s health anxiety lessens, ironically, when they do get seriously ill.

My health anxiety is associated with compulsive behaviors. For example, when I was a child, I was afraid of contracting leprosy. As a means of keeping my worry at bay, I’d count my fingers and toes, since I heard that people who had leprosy had those fall off.

Later on, when I lived independently, obsessive worrying and the resulting compulsive behaviors extended to other situations. For example, I’d be afraid of carbon monoxide poisoning and would have to check that my heating was off and windows open at night. I often checked this twenty or thirty times a night.

Obsessive compulsive disorder (OCD) is classified in DSM-5 under its own category separate from anxiety disorders. The obsessive compulsive spectrum also includes disorders that aren’t commonly seen as anxiety disorders, such as hoardng and trichotillomania (compulsive hair pulling). However, OCD used to be seen as an anxiety disorder. Antidepressants can help, but so can exposure and response prevention. In this type of psychotherapy, the patient is gradually taught to lessen the compulsive response (eg. checking) to a feared scenario. For example, people who have hygiene-related compulsions gradually move from say a three-hour shower down to normal shower time, decreasing their time under the shower by one minute a day. For me personally, my obsessions and compulsions related to the risk of carbon monoxide poisoning decreased dramatically when I was hospitalized.

Another type of anxiety disorder is specific phobia. Everyone probably has something they are fearful of, but a specific phobia is only diagnosed when the fear and resulting avoidance of situations greatly impairs the person’s daily functioning. Similar to OCD, specific phobias are treated with exposure therapy, where the person is gradually intrduced to the feared situation or object and learns to endure the fear. For example, a person with a spider phobia might be first intrduced to pictures of spiders, then videos, then look at a live spider, etc. You can also be asked to simply imagine the feared scenario (eg. looking at a spider). After all, with certain phobias, it is not feasible for the therapist to take the client on to the real experience.

A final type of anxiety is social phobia. A person with social phobia is extremely fearful of social situations because of the fear of making mistakes or being criticized. As a result, people with social phobia avoid certain or all social situations. Many autistic people develop social anxiety as a result of their real social ineptness. I for one do not consider myself that socially anxious, but when I filled out a social phobia questionnaire online, it said I had very sevre social phobia. This is probably because I get overwhelmd by social situations easily and avoid them because of this.

People with social phobia, often children, may also suffer from a co-existing condition called selective mutism. This is an inability to talk in certain situations (eg. at school) while the child has adequate speech in other situations (eg. with parents). I displayed signs of selective mutism as a teen. Though this was in part anxiety-related, it also related to my autism.

There are still many other types of anxiety and related disorders, such as panic disorder and agoraphobia. Post-traumatic stress disorder (PTSD) also used to be classified as an anxiety disorder. I used to have a diagnosis of PTSD and still have some of its symptoms, but I may discuss this at a later time.

Reflections From Me

Back-to-School Memory

One of the prompts over at Mama’s Losin’ It is to describe a back to school memory. Usually, my first days at school were quite eventful, and not usually in a positive way.

I remember the day I started in seventh grade at a new school for the blind in 1998. It was my first time taking my laptop to school on a weird-looking troller, because I couldn’t carry the backpack myself. In elementary school, we’d all used braille typewriters. We started the school day with a talk from the principal, and then everyone went to their classrooms.

For my first class, we had computer education, for which we didn’t use our own laptops, since not everybody had one. In fact, I was the only one who had a laptop not provided by the school.

Our next class was either biology or English. We’ll say it was biology, and there, I had to use my computer. And it wouldn’t start up. I had my teacher take a look, but she couldn’t figure out the problem either. Neither could my English teacher for the next hour. I had an utter meltdown, fearing i’d ruined my entire school experience because I couldn’t even figure out my own computer. As I usually do, I refused every opportunity at finding a solution, such as my taking my schoolwork home to do it once my parents had figured out the problem. I was in total panic.

As it turned out when I got home, my parents had set a password on my computer which they hadn’t told me, and had forgotten to have my computer bypass the password upon startup. They’d set the password to prevent teachers from doing stuff with my computer they weren’t supposed to, and they hadn’t told me for fear I’d let it slip off my tongue.

Recently, I related this story to my husband, who is quite computer savvy. He got a post-secondary certificate in computing at age twelve, so he knew a bit about the computers of the late 1990s. He told me that the way my parents had set up the password was not a safeguard anyway.

I have had countless more back to school experieneces ever since and many more bad experiences with computers at school. Once I went to a mainstream secondary school in 1999, I was lucky to have my father work in computers there. At least, I was lucky when my computer acted up. I wasn’t so lucky when I acted up, because inevitably my father would find out.

Mama’s Losin’ It

Strategies for Relaxation

If you haven’t figured it out already, I need to make a confession: I am very easily stressed out. As I wrote on Thursday, I have been on or over the edge of a meltdown a couple of times lately. Since we are discussing what helps us relax on the spin cycle this week, I thought I’d list a couple of things.

1. Mindfulness and meditation. I do guided meditations every once in a while. Simply focusing on my breathing for a bit also helps. It is important not to make yourself do anything other than focus. If your attention drifts off, notice it and go back to focusing on the meditation or your breathing. You can also use a mantra.

2. Yoga. I discussed this before. Yoga can be hard when you do difficult poses, but remember yoga is for everyone. If you can’t do a certain pose exactly as experienced yogis do it, there is usually a way to adapt it to make it easier. That way, you are practising self-care, which is important in relaxation.

3. Essential oils. I own an AromaStream essential oil diffuser. It doesn’t use water or heat, so can be left on without supervision or even when you’re sleeping. There are many oils that are thought of as having relaxing properties. Examples are chamomile, lavender, bergamot, ylang ylang and jasmine. You can of course make diffuser blends.

4. Herbal teas. I have discussed these a few times. I find particularly chamomile, lavender and valerian root relaxing. St. John’s wort is thought of as having antidepressant properties.

5. Soothing music or sounds. I find that, while music that’s a little more upbeat helps cheer me up, if I truly need to relax, I benefit from nature sounds and soft music.

6. Blankets. I still need to buy myself a weighted blanket. However, lots of regular blankets also do the trick of helping me relax.

What helps yu relieve stress and relax? I’d love to read your responses in the comments or in a post of your own. Why not link it up with the spin cycle?