Monthly Archives: February 2018

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.

Agree to Disagree

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

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

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

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

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

Linking up with Five-Minute Friday again.