Tag Archives: Day Activities

Currently – July 2018

It’s still hot, so my book review and several other complicated posts will have to wait yet again. Today, I’m participating in this month’s Currently, hosted by Anne of In Residence and Shelly of The Queen in Between.

Celebrating: my birthday. It was last week, but I still have yet to get my husband’s present for me, as I asked him for a summer jacket, so he’ll have to have me pick one. I don’t like online shopping for clothes, as I won’t be able to feel the fabric then, so we’ll have to go to a brick and mortar store. We were in the nearest larger city yesterday for a mental health appointment for me, but my husband felt it was too hot to go shopping.

My oldest sister-in-law’s birthday is also coming up on Sunday. She doesn’t seem to like celebrating it though.

Visiting: my in-laws. I felt rather lonely and stressed this afternoon, so called my mother-in-law. She offered to pick me up and we drove to my in-laws’ house. I had dinner there and we walked their dog.

Baking: I’m not baking anything at the moment. I wasn’t at my current day activities today, as I was taking a look at a possible new day activities place. We usually do a simple baking or cooking activity at my current day activities on Wednesday and they do the same at the potential new place, but not today.

My husband though baked a delicious strawberry cheesecake for my birthday last week. I am used to getting apple pie on my birthday, but didn’t want that this year. My husband said we did need to have some cake for my parents, who were coming over, so I chose cheesecake.

Wearing: skirts! One of my favorite aspects of summer is being able to wear skirts. I have three of the same kind in red, blue and green. Then I have one other skirt, a blue one with a rose on it, that I got from my husband for my birthday several years ago. Lastly, I have a green one which is just a little too tight for me now, but I’m hoping to fit in it again next year.

Loving: life, mostly. I am genuinely feeling much better than I was several months ago. I still can get self-destructive when triggered, which still happens every now and again. However, I think I can be fairly confident that I’m no longer seriously depressed.

What have you been up to?

Rays of Sunlight – June 2018

Wow, we’re almost halfway through the year! Time definitely does fly. I have a handful of new post ideas in my head, but today, it’s far too hot for a complicated post. Instead, I’m going to share my positives, or rays of sunlight, for the month of June.

1. Summer. The weather is still beautiful. I heard on the radio that we broke a record for heat the second quarter of 2018. My husband also said that the weather institute predicts a very wet summer. I’m hoping not, since for everything other than complicated blog post writing, this weather is great (although my husband thinks otherwise).

2. Going for walks. According to my Fitbit activity tracker, I reached the recommendded step goal of 10,000 daily several times this month. Of course, that isn’t nearly good enough, as it’s a recommended daily goal, but I’m still enjoying competing with myself.

3. Going to a spa with my sister. Back in February or March, my sister said she’d like to take me to some kind of spa someday in June when her husband would be on a business trip. This day came round June 18. We went to a spa called Sanadome in Nijmegen, which has a lot of scentsy baths, bubble baths and warm swimming pools. I loved it. My sister paid, as this was an early birthday gift for me. Afterwards, we went out for dinner at my favorite restaurant, which I discovered when I was hospitalized in Nijmegen back in 2008. Unfortunately, they no longer had my favorite, turkey, on the menu.

4. My birthday. Yay, I turned 32 on Wednesday! I’m still often pretty excited about my birthday and becoming a year older, even though with each year I come closer to old age. As I had already seen my sister when we went to the spa, she didn’t visit on my birthday. My parents did though. We went for a long walk (one of the days I reached 10,000 steps). After that, we had dinner at a Mexican restaurant in Doetinchem, a city about twenty minutes from my home.

5. BBQ’ing with my in-laws. I don’t know whether it was for my birthday (just let me think it was) or some other reason, but my mother-in-law invited us over yesterday. The previous day I’d been stuffed after the Mexican dinner, but I still enjoyed the food yesterday. Don’t ask me about my weight.

6. Kindle. Yes, I have to mention it again. In early May, I bought my first book on Kindle, which I’m slowly moving through. This month though, I rediscovered foster care and inspirational memoirs. I decided to buy one and flew through it. I’ll likely post a review in a few days.

7. Visiting potential new day activities. I will likely write a separate post on this, but let me say that I might finally have found a place that’s suitable. We’re moving slowly and I won’t make any final decisions until we’ve spoken with the Center for Consultation and Expertise consultant. That meeting has been set for July 31.

8. Depression finally lifting. I’m still not feeling overly happy, but at least I can say I’m no longer depressed. I am so glad my increased antidepressant dose hasn’t caused any side effects either.

I hope you’ve had a great June too.

A Cornish Mum

#WeekendCoffeeShare for June 16, 2018

I have seriously been meaning to write more and have had a few ideas floating around my head. Someohow though I could never find the energy or motivation to actually sit down and write a post. This week, a lot happened, so it’s about time I join in Alli’s #WeekendCoffeeShare again.

If we were having coffee, first I’d tell you all about the visit to a few possible new day activities places last Monday. There were four places that I would be visiting: a day center like the one I go to now, an industrial workshop, an arts place and a farm. The care consultant explained about each place and said the farm was pretty large and low-support, so I would most likely not be able to do much there. I don’t like industrial work, so I turned that one down too. The arts place, we did visit, but it didn’t turn out to be suitable. They mostly do textile arts, painting and drawing there, none of which I can do. They also do ceramics, which I can do but don’t usually like. It was also rather crowded and noisy there.

The day center consists of four groups, two of which are relatively high-support. I was shown around these two groups. The first one, which is the highest-support one, seemed really suitable. They have arund a 1:5 staff/client ratio, which is similar to my current group and is doable for me. The group seemed a little more structured than my current group. They go for walks regularly. They also have a garden with some swings and a rocking lounger. The center has a sensory room near this group. I spoke to one of the staff for this group, who happened to have seen me at the horseback riding school a few times. You see, some people from this day center go horseback riding there too. They also go swimming every other Tuesday. I assume this is only for peoople for whom a volunteer buddy can be found, but I hope that should I transfer here, I can do this too.

I was up front about the fact that I could have meltdowns if my irritability isn’t acknowledged and dealt with on time. I think though that if I transfer here, the consultant from the Center for Consultation and Expertise (CCE) can help us figure out a good support plan.

We also visited the other group, where people do mostly table-based activities. This group was a little more crowded and lower-support and I like walking and sensory activities more than table-based tasks. I ultimately chose to try out at the first group. On June 25 and 26, I’ll be spending the mornings there. We’ll be evaluating this on the 26th. I have decided to wait to potentially transfer till we’ve spoken to the CCE consultant on July 31.

I can’t convey through writing how excited I am about this possible new opportunity. I really hope it works out. Transportation may be an issue, but I have my hopes up that this will be sorted out.

Next, I’d be sharing about my next session of dialectical behavior therapy (DBT) with my nurse practitioner. It was good. We discussed rational, emotional and wise mind. Wise mind is like intuition, the integration of emotion and reason. One of the goals of DBT is to get into wise mind more often.

Last week, I had called the on-duty nurse at the psychiatric unit because I was close to a crisis due to feeling very lonely. I had initially felt really bad about having called, because loneliness is a common reason for me to land in near-crisis and need to call them. My nurse practitioner validated me, saying I don’t have their phone number for no reason.

If we were having coffee, I’d share about my weight loss this past week. I lost 1.5kg in just over a week. Now this evening we went to an all-you-can-eat restaurant, so I’ve probably gained it back, but I’ll lose it again soon enough. I also met the recommended daily step goal (10,000 steps) again on Wednesday.

What have you been up to lately?

#WeekendCoffeeShare for May 26, 2018

Today, I’m linking up with Ali’s #WeekendCoffeeShare. The idea behind #WeekendCoffeeShare is to catch up on how your week has been. It’s a good way to share how you’ve been doing without having to devote a separate blog post to everything you’re up to. So sit back and grab a cup of your favorite drink (it’s rather late for coffee here).

The week started off rather relaxed with Monday being a holiday because of it being the day after Pentecost. That being said, I don’t really like days off, as I tend to sleep away the day anyway and feel bored when I’m awake. I’d have rather gone to day activities.

When I came to day activities again on Tuesday, I was a little anxious. There’s a family day at the center next week. Originally, my mother-in-law would be attending, but given the fact that I’m being kicked out of this center anyway, I feel it’d be useless. Besides, I have an appointment with my psychiatric nurse practitioner for dialectical behavior therapy that afternoon. I just told a white lie by omission and said my appointment was the reason I and my mother-in-law won’t be there.

On Wednesday, I had an okay day. My home support coordinator came by. She’d visit me on Thursday too, as my regular home support worker couldn’t come. I may get another support worker in her place, as she has a rather heavy workload. My mother-in-law also took me on some errands.

I found out on Thursday that things might not be as hopeless on the day activities front as I thought them to be. My support coordinator had contacted a day activities farm about 25km from my house. Farming isn’t my ideal sort of day activities, but I’m willing to go take a look there. The coordinator for that place had referred her to another person for placement inquiries. This placement person said they have three other day activities places in that area, all roughly 20-25km from my home. This is quite a bit farther off than the 15km to my current day activities (which is already relatively far), so transportation may be an issue. However, I’m sure my support coordinator will find a solution to this. I’ll be going to visit all four places on June 11. There is the farm, which was said to be good for those seeking experience-based activities too, so you’re not necessarily required to work hard. Then there’s an industrial place (but the placement person said not to worry about pressure), an artsy place with a shop and a day center similar to the one I attend now.

I am feeling slightly optimistic about one of these places possibly being a good fit for me. I actually am thinking of mentioning my experience with soap and skin care product making in hopes that I can get the support to pick up that hobby again, either at the artsy place or the day center.

Yesterday I went to the adaptive riding school for horseback riding. Everyone in my class was more noisy than usual and I experienced a bit of overload. Nonetheless, I enjoyed riding my current horse, Angie.

Today, my husband and I went to my in-laws to spend the afternoon and part of the evening. My in-laws have a pretty large house in the countryside. They have horses there. I helped brush one of my mother-in-law’s horses, Remco. We also ate homemade pizza. One half of each of our pizzas had a cauliflower crust. I actually liked it better than the regular crust.

What have you been up to this past week?

An Eventful Week

And again I didn’t write for an entire week. The past week was rather eventful and stressful. I have been distracting mmyself by going on Tumblr and attempting to start something up there. I’ve had one Tumblr account or another ever since 2008 but never quite understood how it works and still I really don’t. However, I’m enjoying the community of mental health users there.

The reason the week was stressful was because of a lot of emotion-evoking events. First, my grandma died Saturday night. This caused a lot of emotions in me, because my grandma was the only family member I had a good relationship with. Her funeral was yesterday and it was good to see a lot of aunts, uncles and cousins I rarely see at all. The funeral service was good. My sister spoke on behalf of the grandchildren. I couldn’t help but laugh at some of the stories she told.

Another emotional event was the orientation meeting with the coordinator from the Center for Consultation and Expertise (CCE) on my situation re day activities. In attendance were the CCE coordinator, my day activities and home support staff, my mother-in-law (who acts as my informal representative), the local authority social consultant, my psychiatric nurse practitioner and me. The coordinator does the first meeting. If she decides it’s necessary, she’ll involve one or more consultants who will help find solutions to the situation at hand.

As it turns out, my day activities staff were hardly open to any suggestions from the CCE coordinator that would allow me to stay at this center. They kept making excuses about my meltdonws (which I haven’t had in a while) causing seizures and aggressive outbursts in other clients. This never really happened. Besides, these other clients get seizures/outbursts from a lot of behavior that other fellow clients exhibit too. I myself witnessed this on Monday.

We discussed the reasons for my meltdowns. Sensory ovelroad, demands and stress often set me off. The CCE coordinator asked whether I’d ever had a sensory integration assessment. I haven’t. It was at one point suggested by another consultant but my then psychologist (the one who kicked me out of the institution last year) dismissed this. Same for the trauma therapy recommended by the CCE consultant when we had a consultation in 2010.

We also discussed my living situation. This had not been the direct reason for contacting the CCE, but now that we had them involved anyway, my home support coordinator suggested we discuss this too. It is really hard. I mean, I experience a lot of stress now that I live independently with my husband. I was open about the worsening of my depression, including suicidal thoughts. I don’t want to die though, so the CCE coordinator asked what I do want. I honestly don’t know. At one point, the CCE coordinator also asked me directly whether I’d have wanted to live independently had the psychologist not kicked me out of the institution. I said “No”. My home support coordinator talked about the possibility of me and my husband moving closer to supported housing. This may be very difficult bureaucratically, as psychiatric diagnoses (including autism) don’t qualify you for long-term care, but maybe the CCE can help us figure this out.

I have mixed feelings about the meeting. I am somewhat hopeful but also a little pessimistic. Since the day activities staff aren’t open to solutions that will allow me to stay there, we’re at the mercy of a possible other day activities center. I hope we can find one.

Memories: Remembering Painful Events #AtoZChallenge

Welcome to my belated day 13 post in the #AtoZChallenge of random reflections. Today, I chose yet another prompt from the 397 journal writing prompts and ideas. It is “Memory” and the prompt is to share your most painful memory. That is really hard, as I have a lot ofpainful memories and also tend to dissociate when remembering painful events. So I’m just going to ramble.

The first memory that came to mind is that of the day I was admitted to the mental hospital. This was November 2, 2007. I’m pretty sure I shared the details of that day already though, but oh well. I had been planning on returning home from my parents’ city that day, but freaked out at the train station. The police were called and removed me. I wandered through the city for a few hours. The police were called several times and instead of speaking to me, they called the training home in that city, in which I’d been a resident before moving to another city. In the evening, I was close to the training home and a fellow client called me into her apartment. She said I could sleep at hers fo the night and we would find a solution the next morning. However, the staff came in and kicked me out. That was when I spiraled into full-blown crisis. I walked to the nearby bus stop. In my memory, the sun was shining brightly, but this isn’t possible, as it was 8PM in November. I phoned my support worker and the training home’s coordinator to let them know I was going to commit suicide. This was what led the bus driver to call the police, who took me to the police station and called the crisis service.

Another memory that came to mind happened 9 1/2 years later. It was the “exit meeting” I had with my psychologist in late April, 2017. I tried desperately to get her to see that I needed support once leaving the hospital after 9 1/2 years. She didn’t see my point. Apparently, it had all been my responsibility to make sure I get after care, as I supposedly didn’t want anything. Because it was thought back then that a simple phone call to the day activiities manager for the center I go to now, would sole everything, I was given a week’s extra time. As it turns out now, the day activities manager interpreted it as me only needing day activities at his center for a short while. This is backfiring now that I’m being kicked out of there.

Both of these are not the most painful memories I have. Those are childhood memories. However, I don’t want to trigger myself by sharing them.

Joyous: The Last Time I Felt Genuinely Joyful #AtoZChallenge

Welcome to day 10 in the A to Z of random reflections. Today, I picked yet another prompt from the 397 jorurnal writing prompts and ideas. It is “joyous” and asks about the last time you felt joy.

Now I for one aim to find joy in little everyday things. However, for a long time, I have been distinctly remembering th elast time I felt genuinely happy. This was in November. Let me share.

We had a “day out” at day activities. We weren’t actually going anywhere, but the money the staff used to organize this special day for us was originally intended to take us on a trip. Since many of my fellow clients are severely intellectually disabled, they wouldn’t benefit more from an actual day out than they would from a special celebratory day at the center, or so the staff reasoned.

In the morning, two female clowns were visiting the center. They visited each group separately, so we didn’t have to all come together. It was a lot of fun. First, one clown called out a fellow client’s name. I chimed in, calling her name in my typical echolalia voice. This got the clown to think I had this client’s name as well, so she came to me. I was allowed to feel her clown shoes and hat and we also danced a little.

After the clowns left, a local snack bar sent a vendor with French fries and all sorts of snacks. I attend a group for severely intellectually disabled people, so for my fellow clients and initially for me too, the staff was deciding which snack we would eat. I asked to visit the industrial group (for more capable people). As it turned out, we were allowed to get as many snacks as we wanted, so I had some fellow clients from the industrial group help me to the vendor. I didn’t binge, but I definitely ate more than would’ve been healthfully responsible. Then again, we only get this type of event once in at least a year.

What was the last time you felt genuinely happy?

Changes

This week has been rather eventful and yet, nothing really did happen. A lot of changes are on the horizon for me, yet nothing has really changed yet.

First, I found out a few weeks ago that next week, my primary day activities staff will be leaving the day center. It is great for her, as she’ll embark on a new and challenging path in her career. For me though, it’s quite hard. Some of my other staff and family have been askign whether I mind at all, since I’ve been struggling at day activities and she was the one who filed the incident report that led to my day activities hours being cut. Yes, I do mind, since despite this, I like this staff a lot.

Then on Thursday, I found out that my CPN is leaving too. It’s also to embark on a new and challenging path in her career, but it’s sad nonetheless. My CPN and I have had quite a few misunderstandings over the ten months so far that we’ve worked together. However, I’ve noticed that I did make progress. It seems odd, since both my husband and my psychiatrist have been commenting on how I didn’t get far on the DBT course yet and it’s apparently my CPN’s fautl. Apparently, she should be limiting my bringing up only indirectly related topics.

I know the nurse practitioner who will be replacing her already from my intake interview last year. It is a slight disadvantage that he’s male, but other than that, I think I could get along with him just fine. However, it’s still a bit stressful that so many people are leaving at the same time. After all, my nurse will also be taken off my case. We’re not yet 100% sure who will be replacing her.

On Friday, I had a meeting with my psychiatrist. We discussed my progress on the DBT course, my medication and I mentioned I’ve been rather depressed lately. I did say it’s been going on for half a year already, so if I can hold it together for that long, it must not be that bad. She ignored this comment and proposed to increase the dose of my citalopram from 20 to 30mg. It’s a bit scary, since I’ve been on 20mg ever since 2010 with no med review whatsoever and I didn’t even know why I’d been prescribed it. IN this sense, I like it that my psychiatrist did ask to see me in a month’s time for an evaluation. I really do hope the med increase will help with mood improvement.

Update on Day Activities

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

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

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

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

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

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

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

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

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