Tag Archives: Orientation and Mobility

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

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.