This was truly a mixed week. I wanted to write a gratitude list for it, and maybe I will do so tonight, but right now I don’t feel like it.
On Monday, I attended day activities as usual. A fellow client, an older man, attended too as usual, but he was very unwell. He had been ill for a long time and the staff had feared for his life on a few prior occasions. I attended day activities during the morning only and I worried in the afternoon that he’d die soon.
On Tuesday, the man wasn’t at day activities. I heard the staff talk about his group home staff having had a scare in the morning, but he was still alive. In the afternoon, I heard them talking about palliative care. By late afternoon, when us clients werre ready to leave, I heard that he’d passed. For those who don’t know, my day activities group is for people with severe intellectual disabilities, so i’m the only one who understands the conversations staff have among themselves basically.
On Wednesday, the other clients were told that this man had died. Most still don’t fully understand, but some have made beautiful drawings in his memory that will be given to his family on Monday. Near the center’s front door is a table with (electric) candles, a picture of the man and all the drawings. I decided to make a butterfly soap for it. I made it on Wednesday afternoon with my support coordinator. It turned out great, a beautiful lavender blue with lavender fragrance oil.
On Thursday, I was off from day activities and I spent the morning in bed. It didn’t really feel good, but I had nothing planned for the day except for horseback riding at 4:30PM. That was a great experience. I rode Aagje, a fjord horse with long hair (which is unusual for this breed).
Today, I showed my day activities staff the butterfly soap I’d made and placed it on the client’s remembrance table. We tried to do day activities as usual as much as possible. We walked to the marketplace in the morning. In the afternoon, when I went for a short walk with the day activities coordinator, I told her I wanted to ask a rude question. I wanted to ask whether, now that this other client had died, I could take his place at day activities on Thursdays. I still feel pretty awkward having asked this, but she understood that, if I waited a while, they might’ve gotten a new application. I E-mailed my support coordinator on this issue too.
Early this week, I got an E-mail from my support coordinator forwarding the termination letter from the Center for Consultation and Expertise. I didn’t understand this, as the consultant had offered to be my contact for the long-term care funding agency. Apparently, she still is somehow. I really hope I hear from that agency soon. My support coordinator did E-mail the local authority’s social consultant, who is in charge of my community care funding, to extend my funding for two months as we wait for long-term care to kick in.
Right now I feel… numb? I was a bit dissociated this afternoon, as my day activities staff were discusing clients’ severe challenging behaviors (not current fellow clients of mine). I remembered my time on the locked psychiatric unit, where I was often threatened with seclusion for problem behaviors and was in fact secluded or restrained a few times. It felt good disclosing this to my staff, but I did feel a bit awkward.
Now I’m waiting for my husband to get home from work. He’s going to bring French fries and snacks. I look forward to that.
I am linking up with Word of the Week. I choose “loss” as my word of the week in my fellow client’s memory.
Yay, it’s time for my gratitude list with #TToT once again. I am also linking up with the Word of the Day Challenge, for which the prompt is “gratitude” today. Do you want to know what I’ve been grateful for lately? I love to share!
1. Two wonderful full days at day activities between Christmas and New Year’s. There were only about five clients there each day and two staff. On Thursday, I went for a walk with one of the staff. We also ate pancakes for lunch. On Friday, the staff drove the center’s van to a restaurant in a nearby village, where we had a drink. I had hot chocolate with whipped cream. One of the clients from my group, an older man who used to drink beers with his friends regularly before he declined from a brain injury, had an alcohol-free beer. I could tell he thoroughly enjoyed the experience. So did I.
2. Resting over the week-end. I was pretty tired from all the Christmassy stuff by last week Saturday. So was my husband, so we chose to have a lie-in. I normally feel bad about getting up at like noon and my husband doesn’t like it either, but neither of us minded.
3. Oil balls or whatever the English term is. These are fried balls made of the same stuff that pancakes are made of. They’re a traditional New Year’s snack here. I was nauseated from them for days, but who cares?
4. Not having gained any weight over the holiday season. That is, I may’ve lost then gained some or vice versa, but in any case I was at the exact same weight last Monday that I’d been in early November. I already mentioned this last Monday, but I’m still so grateful for it.
5. A long walk with my mother-in-law. On Wednesday, she visited me and we went for a walk into the next village. This was about a 5km walk that took us 70 minutes.
6. Horseback riding with my support worker. Yesterday, for the first time in a while, my support worker was available to assist me as I rode the horse. It was truly a lovely trip. While waiting on the taxi back home, a young man from my day activities came into the canteen. Once she’d made out that we knew each other, his staff prompted him: “Who’s that?” I was delighted to hear him say “Astrid!” I only see this man on one of my days at day activities and I hadn’t expected him to recognize me, so it was truly lovely that he did.
7. Fried chicken. Yesterday, my husband cooked a rather boring meal of macaroni with bell peppers and leek. He surprised me at the end by saying that, if I admitted this was the most delicious meal I’d ever had, he might have some chicken for me. So funny! We had wings and filet. I liked the filet better, so my husband gave that to me.
8. Getting a head massage. We havve a head massager at day activities. I love it and today, my staff were doing beauty stuff. I asked for the head massage first, but I also had my nails done.
9. Looking at an online store for sensory supplies with my staff. I already knew the store and have my sensory cat from there, but my staff hadn’t heard of it. They probably got the sensory room modeled by Barry Emons, the inventor of snoezelen, but his shop is harder to use and the itmes are more expensive than the store I found. I was totally excited ooohing and aaahing at all the lovely supplies and all the more excited because my staff was excited too. We might get some stuff for my day activities group.
10. Dancing. On Friday afternoon, one of the staff at another day activities group organizes a “prom” for the entire center. I only went once before, but today, I decided to go again. I loved it.
11. Eating French fries for the first time in a while. Today, my husband heard a doctor on the radio say that you need to go to the snack conrer once in a while or you’ll get fat, or so he said. The real talk was probably about crash diets not working, but I loved my husband twisting it to an excuse to get us fries. We also each had a burger with it.
12. The lovely blog interaction I’ve been involved with this past week. I’ve gotten more interested in reading and responding to other blogs and it probably pays off on my own blog too. Besides, I just love reading other blogs, as it inspires me too.
What have you been grateful for this past week?
The year is nearly over. I have been debating whether to post a review of the year for a while, since I didn’t start this blog till late July. As such, most of the people who read it, may not be aware of what’s been going on for the first half of the year and I might need to explain too much. HOwever, I want to do this review for myself if for no-one else. Here goes.
The year started off rather bad, with me having a major meltdown at day activities on January 3. I didn’t know at the time how significant that event would be, but it was the one event that defined me for the rest of the year and probably into 2019.
I looked back at my old blog’s posts from January 2018, and I can’t believe how blissfully ignorant I was. In the second week, I chose “Be” as my word for the year, for I inteded 2018 to be a year for rest and staying present. A week later, it was decided that my day activities hours would be cut and I would eventually have to find a new place.
In late January, when I had more meltdowns at day activities, I started thinking of involving the Center for Consultation and Expertise (CCE) on my case. They had been involved with me in 2010 and 2013 previously and I’d hoped they could help me find some perspective. For those who don’t know, the CCE is an agency that helps people who fall through the cracks in the care system due to complex care needs and severe problem behavior. I didn’t really know whether my situation was bad enough, but I was desperate.
I was first told by my community psychiatric nurse, who called the CCE on my behalf and minimized my problems, that I’d have to go to the blindness agency for support. My need for sensory activities, after all, was due to blindness and I couldn’t possibly have severe problem behavior, as that would mean I couldn’t be married or live independently. This assertion caused huge internal turmoil. Some parts of me thought we must be too good for day activities and that’s why we’re being kicked out. After all, aren’t we oh so intelligent? Most of the partsin me felt desperate though and didn’t care about my IQ or our marriage in this sense for that matter.
With the help of my support coordinator, I finally was able to get an orientation meeting with the CCE in May. I apparently expressed my despair well enough that they took me seriously and found a consultant.
In the meantime, my support team and I didn’t sit still. This was why we had already found new day activities by the time we’d start the consultation at the end of July. At the time, I was feeling a bit conflicted about my living situation. My husband was trying to warm me up to the idea of buying a house in the city where he works. I didn’t feel like it, but I pushed those feelings aside. Until late September, that is.
Thankfully, the consultation hadn’t been completely closed by this time. I finally gave in to my feelings and admitted that I want to go into supported housing. I initially felt a lot of shame about this. I didn’t know whether my husband would be supportive and I knew my family wouldn’t be. Particulalry when creating my care plan and reading the application for long-term care funding, I felt embarrassed. There is this voice inside my head. It’s my mother telling me, shortly after my admission to the psychiatric hospital in 2007, that I can’t even wipe my butt without a support worker’s assistance. I can, but so what if I can’t?
My husband turned out to support me. The CCE consultant is willing to stay on my case until we’ve finalized the process of getting me long-term care funding. The application was finally mailed on the 20th of this month.
Can I say this year that I fulfilled my word of the year? Not really. However, over the past few months, since deciding to apply for long-term care, I’ve felt a certain sense of calm. It seems as though I hit rock bottom this year and I can only go up now.
Besides the day activities and living situation, other things happened too. My paternal grandma died. This, for whatever reason, helped me find the strength to distance myself a bit from my family of origin. Since no longer expecting them to be genuinely interested in my life, I’ve felt a sense of calm in this respect too.
I’ve also learned to accept mysselves, that is, my alters, as they are. I am still not fully at a point of accepting myself without the need for diagnostic labels, but I am getting close.
With regard to blogging, I’ve improved much in the past year. I’ve been able to keep a pretty regular blog for five months now. I am so glad I started this blog, even though sometimes I feel disappointed in my stats. This blog is where I can be myself.
It’s Friday again, yay! Last week I skipped my gratitude list post. Not because I didn’t have much to be thankful for, but because I wanted to write some other things and was feeling sick with a cold. Today, I’m taking my chance to do the post. I have a lot to be thankful for this past week. Here goes.
1. The wonderful Christmas box I got last week. I already wrote about it last week, but I want to mention it here too. I particularly love Snowflake, the stuffed unicorn. I also loved the fleece blanket I got in my package. I sat covered in it on Saturday when my cold was at its worst.
2. My cold being almost over. I am still a little sniffy, but with how bad my cold felt last Saturday, I”m truly grateful it’s much better.
3. My staff being well again. My support coordinator was off sick for a few weeks, but late last week, she returned to work. She first visited me on Wednesday. My nurse practitioner, who was off sick even longer, returned to work this week too. I had a good appoitnment with him.
4. A Christmas meal at day activities. On Tuesday, we had a delicious lunch. It was a little chaotic, but good too.
5. Horseback riding again. It was rainy yesterday, but thankfully we could still go on an outdoors ride.
6. Eating delicious tuna macaroni with my mother-in-law. She went horseback riding with me and after that, I ate at her house. It was just the two of us, so I could decide what we had.
7. The application for long-term care being mailed. It was sent out yesterday. It was a little hard reading the application, because my staff had to fill out how impaired I am in various areas on a 0-3 rating scale. I got quite a few 3s.
8. My husband being supportive. He showed his support of me even when I disclosed some rather embarrassing aspects of the long-term care application (ie. The fact that I am quite impaired in my personal care). He knows to some extent, of course, but still it’s a little awkward to admit.
9. All the Christmas decorations at day activities and some at home too. I didn’t use to like those. In fact, the first Christmas of my psychiatric institutionalization, I even pulled them all off the wall on my ward. Now I like a little Christmassy cheer.
10. The weighted blanket a staff made for my day activities group. She gave it to us a few weeks ago and I may’ve mentiooned it before, but then I mention it one more time. I love being in the sensory room and lying under it.
11. Painkillers. I had bad shoulder pain last Tuesday and still it’s not completely gone. I also had a headache today. However, ibuprofen and paracetamol worked well respectively.
12. Christmas songs. I can’t get some out of my head, but it’s lovely. This year is the first year I can appreciate Christmas.
This list was a bit random in its order, but I can’t seem to reorder the items on my phone and am too lazy to open my computer. I hope you enjoyed reading it anyway. I looked forward to linking up with #TToT, but saw it had come to a close for 2018 last week. The linky also is no longer open, but I hope some of those who visit me from #TToT regularly, will leave me a comment anyway.
Hi, I’m Carol. I struggle a lot with our autism. I’m a little panicky at the moment. First of all, I woke up with terrible pain in my left shoulder. It’s been bothering me alll day. We finally took an ibuprofen when we got home from day activities at 5PM. It’s better now, but still bad.
This morning, I overheard the staff at day activities talking about a possible new client joining our group. I immediately worried that this’d mean I’d be kicked out. Not because they need the place (or maybe because of that too), but maybe if my challenging behavior worsens as a response to the staff being busier. That’s what happened at my previous day activities. Then again, they had three new clients join the group in a matter of weeks.
Moreover, we had a Christmas meal at day activities today. This meant my day was different from the usual Tuesday. One of the staff at my group had to help clean up after the meal, so she was in the kitchen most of the afternoon.
Then the staff started talking about day activities next week. They’re closed on Monday but open on thursday and Friday. Then, only six of us will be at the center, which really isn’t enough to justify staff being there. They said that the center normally closes if fewer than ten clients will be there. We want so badly to attend day activities and I somehow understood they’re considering closing the center next week. The staff reassured me, saying they had to set this rule for next year but for now the center will be open.
Still, when I got home, the whole thing overwhelmed me. I started seeing images in my mind of myself with worsening challenging behavior. I felt unsafe at home alone and rejected too. Like, they kicked us out of the independence training home in 2007 and out of the institution last year because of our behavior. Rather than giving us more care when we needed it, they gave us less. Same with the old day activities place. I really hope we can somehow find us suitable supported housing, but I’m so scared that no place wants me. I finally called the on-call nurse at the psych hospital and had a chat with her. That was good, but I feel guilty about having called, because my team say I really shouldn’t need the prescription phone call anymore.
As I write this, I deal with a nasty cold that I’ve been feeling come on for a few days but wasn’t willing to accept was coming on. Not that there’s anything I can do about it. Whenever one of us has a cold, my husband always searches the Internet to find out whether they’ve found a cure yet. So far, no luck. I’m not terribly sick as of yet anyway. I think my husband suffers almost more from the weird noises my body makes when I can barely breathe than I do.
A lot has been on my mind lately. I could of course write a gratitude list and devote a sentence or two to each thing. I may do that eventually, but right now, I want to share about a specific experience in more detail.
Last week, we told our staff at day activities about ourselves. We disclosed that we may have dissociative identity disorder (calling it multiple personality) and explained that it’s a trauma-based survival mechanism. The staff member we told was totally fine with it. She actually validated us, saying she’d seen a little come out to her.
Then on Monday this week, we had a flashback while at day activities. A fellow client needs to be given oxygen at times. This reminded one of our littles of the time we needed oxygen as a four-year-old because our trachea had closed up. An adult alter was able to explain this to a staff before the little came out, but then we could no longer keep ourselves from switching and the little popped out.
This little started talking to our staff, the one we’d come out to the week before. She asked to sit on the staff’s lap. We had agreed when we first came out as multiple that this is okay with both the staff and us. It was such a nurturing experience.
Afterwards, an adult did feel the need to check with this staff that it’d been alright with her, but it had been no problem. That’s a good thing about doing day activities at a center for intellectually disabled people. I’m pretty sure that in psychiatric care, we’d not be allowed to express such a “childish” need for affection.
Hi and welcome to my gratitude list for this week. As always, I am linking up with #TToT. Here are the things I’ve been grateful for lately.
1. My writing spirit returning. In November, I only managed twelve blog posts. That’s really not as much as I’d like. I cannot say for sure that I’ll keep in the writing mood, but I certainly am today.
2. Getting to know new bloggers. I’ve been checking out a ton of bloggers and writers lately and am loving it.
3. St. Nicholas. We celebrated it at day activities on Wednesday. It was a little chaotic, but still lots of fun.
4. Festive candy. I love all the St. Nicholas and Christmas-related candy. So sad they don’t have it in the stores all year, although that’d probably be bad for my body.
5. My supportive staff. My support coordinator is still off sick, but my support worker and day activities staff have been incredibly accommodating. This week, my support worker offered to come on Thursday early in the afternoon even though that wasn’t supposed to be a support time for me at all. On Monday, I will be allowed to stay at day activities for the full day again, because my support coordinator was supposed to see me then.
6. Swimming. According to my Fitbit, I managed 53 laps this week. I can’t believe it, but oh well.
7. The stationary bike at day activities. Our staff are trying it out to see if they want to buy it for the day center. I hope they will. I went on it threee times this week. Unfortunately, my Fitbit doesn’t track my going onto it.
I can probably think of more things, but it’s time to go off to bed now. I hope you all had a great week.
I wanted to write a post yesterday, but I spent the entire day at my in-laws, so I didn’t have the time to write. Today, I’m joining in with #WeekendCoffeeShare again. I didn’t have coffee today, but green tea counts too. Otherwise, I did have coffee yesterday.
If we were having coffee, I’d ask how you’ve been. I’ve missed the Weekend Coffee Share linkup, not having participated in months, and I haven’t checked out the participants’ blogs much either. I really hope to read more blogs soon.
If we were having coffee, I’d share about my week at day activities. As regular readers of my blog know, I spent three full days at day activities this past week. It was lovely. I particularly enjoyed music. I’ve also been able to relax more in the sensory room there and not see staying in it as punishment. The sensory room is supposed to be for relaxation, but at my old day activities, I was often sent there for having a meltdown.
I’d also share about the week-end. As I said, we spent yesterday at my in-laws. Thankfully, my mother-in-law and I were able to walk the dog while it wasn’t raining for a change. Of course, with the drought of the past few months, nature needs rain, but that doesn’t mean I like it.
Today, I spent the morning in bed. In the afternoon, I mostly read a book. I’ve been enjoying reading young adult fiction lately, but don’t let myself take the time to read much. Today I did. I also went on the elliptical for 25 minutes. Unfortunately, my Fitbit activity tracker didn’t record it as exercise.
This week has been a pretty good one. I hope it’s been the same for you.
As a side note, i just realized it’s December already! Wow, how time flies! I was planning on checking out advent calendars, only to realize the first day of Advent already passed yesterday. Can you believe it’s almost 2019? I can’t!
Hi, I’m Marieke. I am the insider who is most often out at day activities. I enjoy sensory activities, movement activities and just relaxing in the weighted chair or snoezelen (sensory) room. I am also very good at relating to my fellow clients. I know that I am (or should be) intellectually more capable, but I don’t feel that way. I guess it’s something to do with social and emotional development, or whatever.
Yesterday, we went to day activities for the whole day. We’ve been going for the whole day on Tuesday for about a month now and we love it. We had fun yesterday too, going for a short walk in the afternoon. There’s a farm with lots of cute animals next to the day center. We walked near the animals. I couldn’t touch them, but the other client who was with me and the staff could see them. He said lots of funny things about the animals. Like, when we passed an alpaca that had its behind turned towards us, he said “butt” and laughed.
Today, our support coordinator would have visited us in the afternoon after we’d spend the morning at day activities. However, she was off sick so couldn’t come. Our support worker also couldn’t fill in for her and our mother-in-law couldn’t come either. As a result, we would actually have nothing to do and no-one to rely on for the afternoon. Our day activities staff were a little concerned about us, so they asked the manager whether we could spend today’s afternoon there too. We get funding for six half-days and we already go on Tuesday and Friday for the whole day and Monday and Wednesday morning. The manager was willing to treat this like an exceptional situation though. So we could attend for the full day today too.
It was so much fun. In the morning, we did a cooking activity. I went shopping for it with the staff. Usually, I participate in the cooking itself too, but we felt this would be too overwhelming. Instead, I went into the snoezelen room. The staff made a stir-fried egg roll with mushrooms, onions and bell peppers.
In the afternoon, we had music. A music therapist came to our group. She sang and played the guitar. We could also play on the guitar for a bit. We sang St. Nicholas songs. I am glad I was out, as some of the others would’ve found this too childish and just been annoyed at the noise. I really loved it though.
Tomorrow, I’ll have the day off, but I will go horseback riding in the afternoon. That should be fun!
It’s been forever since I last shared a gratitude list. Since yesterday was Thanksgiving in the United States, I felt it’d be about time again that I post one. Here goes. As usual, I’m linking up with #TToT.
1. An extra afternoon at day activities. In fact, I started writingg this post while there. As of last week, I go to day activities each Tuesday and Friday for the whole day (and Monday and Wednesday mornings). I am loving it.
2. Horseback riding. I had to shift my riding lessons to another day to be able to go to day activities for the whole day on Friday. The only day off I now still have is Thursday. The riding instructor didn’t have a volunteer then to help me, but my support worker offered to help me. Yesterday was the first time I went riding on a Thursday. It was great!
3. A long walk with my support coordinator. Normally, we walk to the ferry at the end of my road and back. This is about 2.5km total. On Wednesday, I asked her to walk in the other direction. We walked all the way to the next village and back. This totals over 3km.
4. Chinese takeaway. On Sunday, my father-in-law came to our house to watch soccer and other men’s programs (that I secretly do like) with my husband. Usually, he “cooks” for us on these days and this time, it was Chinese. I loved it. I did suffer bowel cramps and bloating for several days after it, but who cares?
5. French fries for lunch. To continue on the food track, we had French fries for lunch at day activities on Wednesday. The reason was they still had some money that needed to be spent by the end of the year. The staff were initially worried that we wouldn’t have a full meal, but we definitely did! It was so tasty! I was a little scared that my husband would be angry because of my weight gain, but he wasn’t.
6. My new stuffed bear. I already got it two weeks ago, but am still so grateful for it. My mother-in-law won it at an event she went to for the animal shelter she works for. I’m calling it Little Bear, because my husband has a big bear too. That one is a little damaged and the littles not-so-secretly want another one, so that we have both little and big bear for ourselves.
7. Swimming. I went swimming with day activities again on Tuesday. This time, I swam a record 52 pool lengths.
8. Getting my hair done. On Friday, the support coordinator at my day activities group braided my hair. I didn’t even know I had long enough hair for that, but apparently I do. On Tuesday, a staff at another group made an even more beautiful braid.
9. New books to read. Last week, I moved all my eBooks and Bookshare books from my computer to my iPhone, because I could no longer read them on my computer. I have since been greatly enjoying reading. I haven’t bought any new books as of yet, but I did download several books off Bookshare.
10. My mood still being pretty good. I can’t say it’s great, but it’s not bad either.
What have you been thankful for in the past week?