Today I Feel…

Posted on by Astrid

Today I feel pretty awful. Several of my day activities staff were off sick, so I got assigned a relatively new staff. This was hard enough. To make matters worse, I was pretty badly overloaded all day. I did try to relax in the sensory room, but really couldn’t find my calm.

In the evening, I started a Dutch blog again. It’s been the umpteenth time that I started one and I’m not feeling too optimistic about how long I’ll be able to keep it up. Then again, I did finally find a way to link to it from this blog, so that I don’t have to keep switching primary sites each time I comment on a Dutch blogger for them to see it. Of course other bloggers seeing your content shouldn’t be the point of blogging. At least, it wasn’t my point when I first started blogging. I didn’t care about my stats. But that was over thirteen years ago. Now, of course I do care.

I saw a post by a Dutch disability blogger. That blogger in fact inspired me to start a Dutch blog again. She was discussing the notion of “mild” forms of impairments. I generally hate that notion, even though I still often fall into the trap of judging people, including myself, by it.

For example, I am diagnosed with level 1 autism spectrum disorder and probably level 1 cerebral palsy too. Only my blindness can be seen as “severe”. Even so, it’s of course the combined effect of these disabilities that causes me to need the support I need. Thankfully, the long-term care fudning agency got that in my case eventually. It doesn’t get it in some other cases.

Like, a friend of mine shared a newspaper article a few weeks ago about an elderly man who was profoundly hearing impaired, nearly blind and hardly able to walk but still too “mild” for nursing home funding. This man ended up taking his own life. I was incredibly saddened by this and at the same time, it made me feel guilty. I’m trying to turn this guilt into gratitude though.

This post was partly inspired by the first prompt in a 10-day writing challenge I participate in. The prompt was “Today”.

Whale Sounds #SoCS

Posted on by Astrid

When I started day activities at the first center I went to when being kicked out of the mental hospital in 2017, I experienced snoezelen® for the first time. Snoezelen® is a type of sensory experience at day activities for people with intellectual disability. The idea is that the entire sensory environment can be tailored to suit the client’s needs. In that room, there was a waterbed. I lay on it listening to a CD called something like Whales of the Pacific. The waterbed had speakers inside of it too, so that it vibrated along with the music.

I grew to love love love that CD. When I left for another day center, I tried to get ahold of this CD but found out it was no longer available in stores. My staff at the old center tried to copy it for me, but that didn’t work. At the next center, they didn’t really have relaxing music I liked, so I usually just lay on the waterbed without listening to music. Their waterbed didn’t have speakers in it either anyway.

Now at my current day center, I have come to enjoy relaxing music again. I particularly like a CD called Songbird Symphony. It has music and bird sounds on it. I was able to find the album on Spotify too, so that I can listen to it while lying in my own bed or while relaxing in my recliner too.

As for whale sounds, I discovered an album on Spotify of whale sounds with music by a group called Robbins Island Music Group. They also release other types of relaxing and focus-oriented music, but I like the whale sounds the best.

Interestingly, I still really don’t like whale sounds without music. I love whale sounds, birdsong and the like, but there has to be a musical component to it too.

Looking back, I remember asking my psychologist at the mental hospital whether snoezelen® would be a suitable activity for me. She didn’t think it would be, as she claimed this is only suited to people with intellectual disability. Well, I love lying on the waterbed, Songbird Symphony surrounding me. I don’t care that I’m apparently too intelligent for it.

I’m joining in with #SoCS, for which the prompt today is “animal sounds”.

Gratitude List (February 8, 2020) #TToT

Posted on by Astrid

It’s Saturday and I haven’t published a blog post in a few days. Today I am bored and slightly depressed, so I thought I’d join in with Ten Things of Thankful (#TToT) to lift up my mood.

1. Soap making. On Sunday, I asked my husband to sort through my soaping supplies. He didn’t need to though, as the essentials were all in a wheeled shopping bag. My mother-in-law took me back to the facility on Sunday evening, so she put the entire thing in the back of her car and helped me get it inside. I took it to day activities on Monday and have been making soap a few times this past week already.

2. Ordering new supplies. I didn’t have a lot of soap base in the bag, so I had an excuse to order new soaping supplies. Besides new soap base, I ordered bath bomb and bath salt making supplies. I never made bath bombs or bath salts before. I am really excited to try.

3. The cooking activity at day activities. I used to do a simple cooking activity with the staff intern on Wednesday. Now that her schedule has changed, we do it on Tuesday. This past Tuesday, we in fact had ingredients for two recipes: ham and cheese sandwiches and a creamy cookie dessert. The reason is that last week, we didn’t do the cooking activity because I had a meeting with the behavior specialist then. The intern had time to help me with both. We ate the sandwiches for lunch and had the cookie dessert later in the afternoon. It was extra gratifying, as the clients on my side of my day activities group can’t have sandwiches due to swallowing issues, but most can have the dessert. We served the sandwiches to the other side and I actually had both.

4. My weight. I got weighed in on Wednesday and I had a small gain of 200 grams (less than half a pound). I attribute that to all the treats I had on Tuesday though. I’m also happy, because people actually notice that I’m skinnier (or rather, less fat, of course) than I used to be.

5. Some long’ish walks. I mean, no, I don’t walk for an hour like I used to at my old day activities and with my home support staff, but I did have some walks of about half an hour. Despite not having walked in the evenings much this past week, I did manage to get to 175 active minutes.

6. The support from my assigned staff. I was somewhat distressed this past week, as I’m still not fully recovered from the meltdowns I had last week. However, my support staff are all very helpful.

Like, yesterday I had a meeting with my nurse from the mental health agency. When I explained my difficulty coping with the noise at day activities, she started to suggest I move to an apartment building for autistic people and occupy myself there or go work at a sheltered workshop. This isn’t suitable and my staff helped me explain this to my nurse.

7. French fries and ice cream. My husband said on Thursday that he couldn’t come by for a long visit today but could take me out to have some fries and a snack for dinner. Today, he canceled. Of course, I miss my husband, but I didn’t miss the fries, as my staff thought it’d be a good idea to order fries and snacks for the entire home. We also had ice cream, which was still left over in the freezer from Christmas. I had the last serving of whipped cream-flavored ice cream.

I can’t get to ten, but I’m definitely in a brighter mood now. I guess that should be my eighth grateful on this list. What have you been grateful for lately?

#WeekendCoffeeShare (February 2, 2020)

Posted on by Astrid

It’s February, yay. I’m joining in with #WeekendCoffeeShare again, even though I’m not 100% sure I feel like writing. I had a lot of green tea and only one cup of coffee today. It’s interesting that, at my husband’s and in-laws’, I mostly drink green tea, whereas in the care facility I almost always drink coffee. Anyway, let’s catch up.

If we were having coffee, I’d share that this week was a hard one. I don’t even remember what I did on Monday. On Tuesday, I was in a near-constant panic at day activities. I eventually asked to go to the behavior specialist’s office to see if I could schedule an appointment with her to talk. However, the behavior specialist on my case wasn’t in the office. Another one was, but I couldn’t quite make it clear what I needed and so I went back downstairs.

That evening, I had another huge crying fit. I took a PRN lorazepam, but still didn’t sleep all night. In the morning, I kept crying. My assigned support worker informed me that the behavior specialist responsible for my care was on sick leave, but she called the one who’d been in the office on Tuesday.

She visited me at day activities at around 11AM and I talked for about an hour. I talked about all that I was overwhelmed by. Particularly, I felt that I need more support at day activities. This still needs some sorting out, but mostly I do now get an assigned staff member each day.

If we were having coffee, I’d share that from then on, I felt okay and haven’t had panic attacks or meltdowns. I do struggle with some level of overwhelm and anxiety, but it’s manageable.

If we were having coffee, I’d share that on Thursday, the family of a potential new client came for a visit. This stressed me out a little, because I thought another client coming to my home means less care for me. This isn’t the case, the staff said.

If we were having coffee, I’d say that I traveled by train to Arnhem yesterday. A transregional ParaTransit taxi drove me to Deventer station. There, a travel assistant was waiting to help me onto the train. She apparently needed to help someone in Arnhem next, so she actually traveled all the way to Arnhem with me rather than just helping me get on the train. My husband picked me up from the station at Arnhem again. It was a relatively comfortable way of getting eased into traveling by train again.

If we were having coffee, I’d share that my husband and I had pizza at our in-laws’ yesterday. Then today my mother-in-law would be driving me back to the facility, so she picked me up at my husband’s at 4PM. We first went to my in-laws’ house again, where we walked the dog and ate fried potatoes, broccoli and chicken. I had a Magnum almond ice cream for dessert.

If we were having coffee, lastly I’d share that I finally brought some of my soaping supplies to the facility with me today. One of our home staff was leaving this week, so I had originally intended to make her a soap earlier. Thankfully, she will be working at another home with this facility, so when I do make the soap, I can bring it to her.

How has your week been?

A Letter Explaining My Life Right Now

Posted on by Astrid

Today’s topic in 7 Days 7 Posts is to write a letter to someone explaining your life right now. I have been thinking about reconnecting with the head nurse from the psychiatric resocialization unit for a while. She was one of the most supportive people I ever met during my psychiatric hospital stay, but still, she was a bit prejudiced. Here is a letter to her.

Dear K,

How are you? I hope you are well. Do you still work for the psychiatric hospital? When I last spoke to L (my named nurse from the resocialization unit), she informed me that the entire Nijmegen long-term care hospital was closing and moving to Wolfheze. Do you work there now?

When I last wrote to you and L, I explained that I was living with my husband in the tiny village and going to day activities. I didn’t inform you that I was struggling. I eventually got kicked out of my first day center with this agency and transferred to another one.

Still, I struggled with independent living with my husband. My husband is a truck driver now and his shifts are like 12 hours a day. For this reason, we finally applied for long-term care funding at the end of 2018, which after a long battle was granted in June of 2019. As of September, I live in a care facility for people with intellectual disability in Raalte. I know you didn’t want me to go into housing for people with intellectual disabilities. Well, I am happy here.

We involved the Center for Consultation and Expertise again when I was struggling at my first day center. The consultant psychologist assigned to my case assessed my needs. Among other things, she concluded that I function emotionally at a level of around 6-18 months.

I go to day activities at a group for older people with profound intellectual disability, most of whom live with me too. I go for almost daily walks. I love to go to the snoezelen® room too. I also do a weekly cooking activity with the staff intern. It’s sometimes difficult to figure out activities I can do, because the other clients mostly just sit around and I almost need one-on-one support with most activities.

I am still married to my husband. We bought a house in Lobith, but this is mostly for him to live in and for me to go to on week-ends.

I still see the mental health team, but have decided not to pursue any formal therapy program for now. Dialectical behavior therapy, which I used to try, didn’t work out because of my autism and my dissociative symptoms. I don’t feel comfortable going through the assessment for dissociation though.

Anyway, hope you are doing well. I suppose L is around retirement age now, but if she still works at the hospital and you still see her, send her my warm regards.

Astrid

Worrying: Will I Be Kicked Out of the Care Facility?

Posted on by Astrid

I have had a lot of dreams in which I was kicked out of the care facility lately. They’re no fun. I don’t know why I have these dreams. I mean, yes, a new client may come to my home, but I didn’t find out about that until today. Besides, my staff say it doesn’t mean I’ll have to leave. After all, there’s still an available room in my home.

Still, it scares me. I worry that, if this other client needs a lot of support, I will not get my needs met. I mean, not because of this other client, but because staff will be busier. Oh my, this sounds incredibly attention-seeking. I don’t want to need more support than I can get.

And what if this other client is very noisy? He’ll most likely be assigned to the other communal room than the one I’m assigned to. However, I think he’ll attend my group at day activities, which is already very crowded and noisy as it is. I was told they had many more clients before I came, but well, then this place wouldn’t have been suitable to me.

I talked about my worries to my former support coordinator on the phone. She told me these are just my thoughts and there’s no reason I’ll have to leave because of this other client. Then again, I didn’t get to elaborate on my worries.

I don’t want to be seen as needing too much. I was often seen as needing too much. Either needing too much or claiming to need more than I got. The two are different. The people at the first day activities I attended with this agency, truly thought I needed one-on-one support most of the time, which isn’t even what I was asking for. The staff on my last psychiatric unit thought I needed little care but was just demanding a lot out of some feeling of inadequacy that was apparently unfounded. Either way, I was asked to leave the place. With the psych ward, things were a little nastier than with the day center, but the result was the same.

I saw the behavior specialist who worked for that first day center today. That fueled my worries even more. I mean, she was extremely supportive, but didn’t really know how to handle my issues either. Then again, she never got to talk to me beyond the one time when she made sure I got transferred from the industrial activities group to the sensory group. That was a good move, but when it didn’t fully work out, I guess the manager stepped in and said he’d been accommodating enough and I would have to leave. That’s what I think will happen here too. I mean, my staff are very accommodating, but what if it isn’t enough? Will we find other solutions? Will I get even more accommodations? Or will I at some point just be kicked out? I’m very unsure and that worries me.

Fidgeting

Posted on by Astrid

A few months ago, one of the staff at my day activities showed me a fidget spinner. I’d never seen one before, although I’d heard of it, of course. It was a little disappointing, to be honest. I mean, yes, you can fidget with it, but it doesn’t have as many features as some of the other toys at day activities. I didn’t really understand the hype.

Last week, the things my assigned staff had ordered for me to play with, came in the mail. There was a deck of cards to play games with, a set of dominoes, but also a fidget toy. This one had a lot more buttons and things.

I often love to fidget, but not necessarily with standard fidget toys. I have a set of makeup brushes at day activities that I like to stroke.

Then again, my main stim (the autistic term for fidgeting activity) is hair twirling. I remember my second autism diagnostician telling me I really needed to unlearn it, as it was a “serious social handicap”. I was at the time in my first month of my psychiatric hospitalization for suicidal ideation, so even if it were a serious social handicap, I had other things to worry about. Turns out my parents and said diagnostician are the only people truly offended by this behavior.

Speaking of which, everyone stims. I have mentioned this a few times before but I remember one day sitting in on a demonstration some social services students were giving of their work. The student pretending to be the social services person was constantly clicking his pen when talking to the client-student. I thought this was odd, but no-one else noticed.

Still, I may want to get myself a stim toy to replace the hair twirling with. I saw some on Stimtastic.com that I may love, but the shipping cost from the United States to here holds me back from ordering anything.

Linking up with today’s Daily Inkling.

Gratitude List (January 17, 2020) #TToT

Posted on by Astrid

It’s been forever since I last wrote a gratitude list. This past week has been truly mixed, but I still feel there’s enough I can be thankful for. I’m joining in with #TToT again.

1. Domino’s Pizza. Last week, I went home to my husband for the week-end. When we were in the car, my husband asked me what I wanted to eat for dinner. I said “Pizza” and my husband in turn asked me whether there’s a Domino’s in Zevenaar, the city closest to our home in Lobith. I said there is. However, we’d been taking an alternate route to Lobith, so my husband said we wouldn’t drive through Zevenaar, so did I mind getting pizza elsewhere? Then he started teasing me, saying stuff like “You’re still a bit sick right?” and wouldn’t it be better if we had macaroni with lots of veggies. Eventually though, he did drive to Zevenaar and we had Domino’s pizza. I loved my chicken kebab pizza!

2. The flu being gone. I feel pretty much as well as possible now.

3. Meeting the neighbors. On Sunday, our next door neighbors organized a New Year’s gathering for the people in our street and the surrounding neighborhood. My husband and I are new, so as a kind gesture to me, they had each person in attendance introduce themselves and also describe the appearance of the person next to them. I liked it. The neighbors seem nice. I at first wasn’t too sure how much to disclose about my situation, but eventually did manage to explain some without launching into some type of self-centered and depressing monologue.

4. The soap making plans. I told you about it already on Monday. I’m hoping my husband will be able to bring my supplies tomorrow. He did ask me to think of another activity we can do together in Lobith, since I asked him to bring all my supplies. I after all didn’t feel it’d be a good idea to let him sort through my stuff. Now that I think of it, several ideas come to mind.

5. Ylang Ylang essential oil. I had this in my diffuser on Monday night when I was too hyper to sleep. It’s a lovely scent.

6. Over 8,000 steps on Tuesday. I walked three times. The other days have also been relatively good in the activity department.

7. The peanut butter-chocolate smoothie bowl we made on Wednesday.

8. Chatting to some fellow clients. Like I’ve said before, most people in my home are non-speaking and severely intellectually disabled, but there are some clients in other homes and at day activities who can speak and with whom I can have a normal by non-disabled standards conversation. I had some nice interactions this past week.

9. Lorazepam. Like I said yesterday, I was in a bit of a crisis. Thankfully, the PRN lorazepam I took worked.

10. Getting my Braille display fixed. Some dots had been stuck up for a few weeks. I thought the thing just needed cleaning, so I was hesitant to call the company to get a tech guy to come over. Turned out two cells were broken. I’m so happy the thing is fixed now. I did okay reading with these few dots stuck up, but still, it was a bit annoying.

What have you been thankful for lately?

Another Crisis

Posted on by Astrid

As those who’ve been following along with my writing will know, I was in a bit of a crisis on Monday. Tuesday and yesterday were better, but today was bad again.

It started out with a horrible nightmare last night. I still can’t shake the thought that I’ll be kicked out of the care facility sooner or later and that was what the nightmare was about. I woke up all sweaty and fearful. I called the night staff to calm me down.

Then by mid-morning, I felt rather insecure. My day activities group is divided into two subgroups. There are three full-day staff for these two subgroups combined, plus one staff who has the short 10AM-2PM shift. Today, one of the three staff who would otherwise stay the entire day, had the short shift too. I didn’t mind as much, as still each subgroup would have one staff for the full day. Then one of the regular staff, who would stay the full day, had to attend to a client one-on-one. The would-be third full shift was a sub, so she needed help doing lunch. So at the end, my full-day staff ended up helping her in the other room and the short-shift staff was attending to my subgroup on her own. She had to help people get around, to the bathroom, etc., too, so I was feeling rather left out. Everything went a little chaotic and that led me to enter the orange phase of crisis prevention.

There are three or four phases: green for adequate coping, yellow for mild distress (this one is sometimes left out), orange for serious distress and red for crisis. I was eventually able to go back to yellow as lunch was served and I ate.

Then I wanted to go into the snoezelen® room to further calm down. However, the music, though it was my favorite calming record, was way too loud. After some time, I ended up having a severe meltdown. I wasn’t able to calm down once back at my group.

In the end, I decided to take a PRN lorazepam and go back to the home to lie on my bed. I slept for two hours straight. Now I’m back to green again.

I’m joining in with #FOWC, for which the prompt today is “Crisis”. The prompt couldn’t have come at a more appropriate time.

Peanut Butter-Chocolate Smoothie Bowl!

Posted on by Astrid

Hi all, how are you? I had a better day yesterday than Monday. Didn’t sleep much at all Monday night, because I was so excitedly browsing sites for soap making recipes. However, I wasn’t really tired or grumpy at all.

Today was even better. On Wednesdays, the staff interns at day activities usually do a cooking activity with me, as most other clients are off to a weekly music performance in the assembly hall. I hate the music performance but love cooking, so that’s a win-win. One of the interns changed her schedule, so isn’t on on Wednesday anymore, but the other still is. Today, we made a smoothie bowl. It didn’t turn out as well as I wanted. Particularly, we used a little too much milk.

What We Used

  • 1/2 cup milk. The original recipe had us use 75ml of oat milk, but I thought that would be too little. Apparently not. Half a cup, so roughly 125ml, made the smoothie a little too thin. As a side note, we used regular cow’s milk.
  • 1 1/2 bananas. We used one for the smoothie bit and the other half on top.
  • 1 tablespoon peanut butter. The recipe I used had us use two tablespoons, but I think that would’ve been way over the top.
  • 1 tablespoon cocoa powder. I can’t remember how much the recipe said we needed to use.
  • A handful granola. This is spread on top of the smoothie.

This made for one large bowl.

How We Made It

First,, I peeled the banana and cut it into slices. I had the intern do the half banana that would be used on top, as I doubted my slices would be thin enough. Then, I scooped the banana, peanut butter, cocoa powder and milk into a measuring cup. I then mixed it using an immersion blender. I have a regular blender at the care home, but had forgotten to take it to the day center. The intern poured the mixture into a bowl and we added the granola and sliced half banana on top. You can also add coconut chips.

How Did It Taste?

It was delicious! Like I said, it was a little too thin. I had expected the thickness to be like custard, but it was more like a milkshake. The chocolate and peanut butter tastes were really well mixed. The smoothie almost tasted like chocolate-coated peanuts. There were hazelnuts in the granola, which tasted extra good when combined with the smoothie. Overall, I loved the activity and the result.

Linking up with the Wednesday link party.

PoCoLo