Things That Made Me Smile (March 22, 2021) #WeeklySmile

Hi all on this lovely Monday! I am so excited to have discovered the Weekly Smile. This is, as the name suggests, a weekly blog event in which participants share what made them smile. Having discovered this meme itself is a reason to smile. I love being positive! Let me share what else made me smile.

First up is my new assigned staff’s kindness. Like I said in my #WeekendCoffeeShare post on Friday, I have a new assigned staff. She is calm, kind and very dedicated to her job. I initially worried she might get too attached and then have to withdraw as my assigned staff. She reassured me though that she maintains her professionalism.

Yesterday, I was feeling a bit triggered. The student staff, with whom I am not fully comfortable yet, had been my one-on-one for the evening. In addition, a male staff may get to work in my home soon. He seems kind enough, but still, it’s an adjustment. All this led me to feeling a bit stressed out when I was going to bed. Thankfully, my new assigned staff comforted me.

After the staff had taken me to bed, I pressed the call button a few times for the staff to come back, but she didn’t mind. She has this little rhyme she tells me each time she puts me to bed. It goes something like this:
Sleep well,
Head on the pillow,
Ass in the straw,
Then Astrid sleeps soon.

This time, the staff adjusted the rhyme to address not just me, but all of the voices (alters) inside my head. That definitely made me smile.

Second is my sensory room experience that I was able to create in my own bedroom. First, I found a calming essential oil blend to put in my diffuser. Then, I found the album on Spotify that I used to have in the CD player in the day center’s sensory room. It is called Songbird Symphony. Lastly, I crawled under my weighted blanket and had my staff cover me with the ball-filled blanket that came with the sensory bed from our makeshift sensory room. In total, I had at least 20kg of weighted blankets on top of me. This probably isn’t healthy for actual sleeping, so I threw off the ball blanket before actually drifting off to sleep. However, the feeling before this was so peaceful. It reminded me of Temple Grandin’s “hug machine”. Reading about that introduced to me the comforting effect of deep pressure years before I felt able to explore my own sensory experiences. Now, I totally appreciate my care staff, physical therapist and the manager for having helped me find my sensory comfort.

What made you smile this past week?

Creating a Sensory Room Experience in My Own Bedroom

It’s been a year since the day center closed. For the most part, it was a good thing for me. I, after all, was often overwhelmed in my day activities group. One thing I miss about the day center though, is the sensory or snoezelen® room. Today, I am sharing how I recreated a sensory room experience in my own bedroom. Since I am blind, I skipped the visual aspect mostly, but I’ll add some ideas for it regardless. That way, you can create a sensory environment for yourself.

Sound

In the day center sensory room, we have a really cool speaker system that’s attached to the bed. It isn’t likely that advanced, so with some speakers at the right position, you may be able to recreate it. I don’t own wireless speakers. However, I found that I can recreate similar effects with earbuds or headphones. I would recommend earbuds for better positioning, but since I don’t have wireless ones, I use my wireless headphones anyway.

I mentioned before that I use an app called MyNoise. This app has over 120 soundscapes and you can customize each individual sound to your own hearing. There are nature soundscapes, but also white noise, Buddhist-like and SciFi soundscapes. I prefer the nature ones.

Like I said, I don’t own wireless speakers, though I might want to invest in some at some point. My phone or computer speakers work okay when listening to music though. There are many calming playlists on Spotify and undoubtedly other music apps too. The ones I love most are Harp Music for Sleeping, Peaceful Guitar and Peaceful Piano. There are also a number of nature sound playlists.

I at one point wanted a music pillow. I may still buy one at some point, but I haven’t yet found one that’s big enough to be used as a sleeping pillow and also works with Bluetooth.

Smell

One thing that my bedroom has and the snoezelen® room didn’t, is an aromatherapy diffuser. I have posted many times about my love for it. Mine cost €40, but they start at as cheap as €15. Essential oils can be a bit expensive depending on the quality you choose. I am obsessed with creating my own blends, so I really like to have a large collection of essential oils. However, if all you want is a nice smell, fragrance oils are also great.

Touch

In the day center sensory room, we had a specially designed waterbed. That felt good, but my own bed is also a pretty good substitute. I usually turn up the head side of the bed slightly.

A thing that’s a true blessing for my senses though, is my weighted blanket. These come in different forms. Some are filled with plastic balls. Mine is filled with sachets filled with granules. It’s a rather expensive blanket at over €500. Thankfully though, my care facility paid for it. With the company we used, you can borrow the blanket on a try-out basis for two weeks for just postage. That helped me make sure it was the right one for me. Mine weighs 12kg, which is relatively heavy considering my body weight of 70kg, but I actually love it this way.

I put a flannel duvet cover over my weighted blanket in winter. When it’s really cold or I need some extra softness for sensory reasons, I use a fleece blanket too.

In addition, I have various soft toys. My favorite is an ordinary stuffed bear. However, I also have a 1.60m large stuffed bear that I got from my mother-in-law for my birthday last year. This one was probably quite expensive. Another of my favorite soft toys, is my sensory cat. This stuffed cat can be microwaved and then gives off heat and a lavender scent.

Sight

Like I said, I am blind with the exception of a tiny bit of light perception. I for this reason don’t benefit from visual stimuli. That being said, I do know a bit about making your room visually appealing to the senses.

My essential oil diffuser works as a night light too. It can be set to seven different colors and I believe also two intensity levels.

Of course, you may want to use your sensory room experience for more than just sleeping. I’m pretty sure in my care home’s makeshift sensory room, the staff put up some form of Christmas lights for the visual effect.

In addition, there are many different visual projection systems. My care facility owns the Qwiek.

Conclusion

I really love my makeshift sensory room in my own bedroom. Generally speaking, creating a true sensory room requires a lot of money. I am so glad though that I could buy some equipment myself or ask for it as a gift. That way, I was able to skip the unnecessary for me expensive things and find things I truly would use. I am very glad that my facility paid for the weighted blanket.

loopyloulaura

Gratitude List (March 20, 2020) #TToT

It’s Friday and that means the Ten Things of Thankful (#TToT) linkup is open again. I haven’t participated in a while, but in these weird times, we need gratitude more than ever. Here are the things I’ve been thankful for lately.

1. Relatively tasty dinners. Here at the care facility, we get our dinners from a meal delivery company. Last week or the week before, I complained that we got boiled potatoes like four times a week and that I’d like rice, pasta or the like more often. Thankfully they customize the meals for each resident, so it’s not like if I want pasta, everyone gets pasta. I think my assigned staff told the company. In any case, I’ve had pretty varied meals lately. On Saturday, we got tuna macaroni and I loved it!

2. The sensory room. The real one at the day center and the makeshift one at the home. The day center was still open on Monday and Tuesday, so I was able to use the snoezelen® room then. On Thursday, some of the staff created a makeshift sensory room in the currently empty bedroom at our home.

3. Walking. Yay, we’re not in complete lockdown (yet)! I’ve been grateful for walks often before, but in these weird times, I get to appreciate it even more. I managed to get over 9000 steps everyday this week so far except for today (and I’m not going to make it today either).

4. Getting day activities at the home. I was a little scared that, once the day center closed, we’d get no activities at all. Thankfully, that’s not true. I brought some games from the day center to the home with me and we have enough staff to do activities with us.

5. Going on the elliptical. I went on Tuesday, thinking I wouldn’t be able to use it for three weeks after that. However, two staff members transferred the elliptical to the empty room in our home, so that it’s now a combined sensory and gym room. I went on it for like 20 minutes yesterday.

6. Modern technology. I’m so glad this pandemic is happening now that we have the Internet and smartphones and the like. Otherwise I wouldn’t be able to connect to my husband, my family or the wider community at all. I’m so happy this thing does connect us all in a weird kind of way.

7. Meditation. I use an app called Insight Timer on my phone for meditating, but I hadn’t used it in a while. Then I checked it out and saw they have a whole section devoted to overcoming fear in these weird times. I loved listening to some guided meditations.

8. A phone appt with my CPN from mental health. We had a pretty good session. We actually did get started on some cognitive behavior therapy like we were planning on. She’s also going to get me signed up for the eHealth module with the agency.

9. My husband. Yesterday I was suddenly overcome with fear that I’d never see my husband again or that he’d want to divorce me due to our inability to be together in this crisis. My husband reassured me that I won’t lose him. He’s so lovely!

10. My health. I almost forgot that this thing is about a viral disease that takes actual lives. I so far haven’t had symptoms of COVID-19, but I’m confident that when (yes, it’s most likely a “when”) I do get the disease, I’ll survive.

What have you been grateful for lately?

#AutisticBliss Is…

A few days ago, I came across a discussion on Twitter with the hashtag of #AutisticBliss. I don’t follow many autistic bloggers, so I cannot be sure the conversation has been taken over to WordPress yet. Regardless, I wanted to write a blog post in contribution to the topic. Here are a few things I consider sincere bliss as an autistic person.

1. The sensory room at the day center. I mentioned this in my Twitter reply too. Back when I was trying to prepare for leaving the mental hospital in 2017, I asked my psychologist whether I could try out snoezelen® at the intellectual disability unit. She said I couldn’t, as it is only offered to people with severe intellectual disability. I’m so extremely grateful I ended up attending a day center for people with intellectual disability once kicked out of the hospital. Ever since, I’ve come to very much enjoy the sensory room.

2. My own sensory equipment in my room. When at my first day center after leaving the psych hospital, I discovered an online sensory equipment store while looking for birthday presents for myself. I currently own two lavender-filled, microwave-safe soft toys from that store, one in my room at the care facility and one in our house in Lobith. I also have a lot of soft toys that aren’t specifically sensory. I enjoy my exercise ball too, as well as my essential oil diffuser.

3. Being able to hyperfocus on my special interests. One of the main autistic characteristics I love about myself is my ability to perseverate. I love it when I’m in hyperfocus mode and actually have an interest I’m passionate about.

4. Being able to collect things, particularly if they’re cheap or free. For example, I have at least a dozen books of journaling prompts on my phone. Most were free either on Kindle or in Apple Books. Now that I am more money-conscious than I used to be, I no longer spend as much on my special interest du jour. However, I really love collecting free stuff.

5. Stimming. Especially if I’m happy. Stims were often so discouraged that I struggle to find ones I can engage in for fun, but when I can, that’s utter bliss.

6. Having found my tribe. I love being part of the autistic community. It helps me feel that I belong somewhere.

What surprising aspect of life do you find is utter bliss?

Gratitude List (November 9, 2019) #TToT

Oh my, it’s been forever since I participated in Ten Things of Thankful. I think I participated once since moving to the care facility. The thing is, I have a ton of ideas for blog posts on my mind but only so much time to complete them. I mean, maybe a gratitude list should be one of the easier ones on my list, but oh well. I don’t know. I don’t want to make up excuses, so here’s my gratitude list.

1. Eating out with my husband and sisters-in-law. The sisters-in-law had offered it to us as a present for us having bought a house. We went to an all-you-can-eat restaurant. My husband thought he wouldn’t particularly like the food, but he did and I loved it. As those who know me well will admit, gluttony is my main deadly sin, LOL.

2. Great reading. I don’t nearly spend as much time reading as I’d like, but I do love the books I’m currently reading.

3. An increase in mental clarity and energy. I’ve been doing better in the brain fog department lately. In fact, I can usually manage to be quite active either physically or mentally most of the time during the day.

4. The sensory room at day activities, including its music player. It is connected to the waterbed, so that the music almost surrounds you when you’re lying on the waterbed.

5. A nice behavior specialist. On Tuesday, I had my review at the care facility. It went okay, but after it, I did experience some trust issues particularly with my day activities staff. She called out for the behavior specialist to talk to me some more and the issue got mostly resolved.

6. Sunshine. Of course, it’s fall here, so we don’t experience the great weather of summer, but we did get some relatively sunny days. It was nice being out in this weather.

7. My former psychiatric nurse practitioner calling me to check in. He also finally sent me the form he’d sent to the assertive community treatment team in my town, since I hadn’t read it yet. It was good to talk to him for a bit.

8. A good intake interview with the nurse practitioner and social worker from the new team. I was able to explain myselves quite well. My current diagnosis apparently is unspecified personality disorder with dissociation along with autism spectrum disorder, but I was able to go into some detail about the extent of the dissociation. It was good also to have a staff from the facility with me. This team is more concerned with one’s individual needs for support than with one’s diagnosis.

9. Walking. When I first came to this facility, I didn’t expect to get out and about much, but I usually do manage at least 30 minutes a day even now that fall has truly set in. I tried to reconnect my Fitbit when I found its charger earlier this week, but the app seems to have locked me out. I don’t really care though.

10. Sleeping with music on. On Thursday, I was so tired from the intake interview at mental health that I slept most of the evening away. I slept with a lovely playlist on Spotify playing on my phone. I am still considering getting myself a music pillow.

11. My husband. He’s so nice! It’s hard not seeing him as much as I used to, but he showers me with love each time we do see each other.

What have you been grateful for?

Validating Jane?

On Saturday, it’s the twelfth anniversary of the mental crisis that landed us in a psych hospital. As those who’ve checked my “About” page or those who’ve known me long-term know, this hospital stay took 9 1/2 years. Then we were kicked out for allegedly being too dependent.

We fought a long battle for the right care. In a way, it started that very day, November 2, 2007, or even before. It hopefully ended when we moved into the long-term care facility we now live in on September 23, 2019.

Most of us are relatively happy here. Content, at least. At least one of us though isn’t. Jane is still telling us to get a real life. To give ourselves a good kick in the behind and go to university, find a jjob and above all, live fully independently. She doesn’t even want us living with our husband, as we could be manipulating him into getting us care.

Today, I’ve been thinking. I recently joined a Facebook group for DID that subscribes to the philosophy of managing dissociative symptoms by thinking of each of your system members as their own individual. We need to work for the betterment of the entire system.

In this light, I’ve been thinking of how to validate Jane. She’s been saying “No” to our every attempt at getting care ever since, well, since she emerged in 2001. I wonder whether she’s “just” an introject, as our parents hold similar views to hers, or there’s more to it.

I remember once, when we’d only been diagnosed with DID for a few months or maybe a year, so in 2011 I think, our then therapist saying that Jane represents our healthy side. Another therapist called her a punitive parent. That never sat well with any of us, but neither does seeing her as the healthy adult. After all, why then does she minimize our every struggle? Isn’t vulnerability part of being an adult, too?

I’m wondering whether we’re doing more than just her a disservice by being in the care facility. I don’t mean we need to leave, but I realize most of us, including me, would like a more enriching life. Many of us feel bored at day activities.

Of course, our recent (and not-so-recent) attempts at doing something to enrich our life, have usually failed. I mean, we could be committing to a class at college, but that hasn’t been a success in ten years. I’ve been looking at writing courses, but they are pretty expensive and I don’t know they’ll actually make me a better writer. I want to go to the gym or horseback riding again, but don’t know whether I could commit to that on a weekly basis considering even just the limits of the ParaTransit system here. Ugh, I’m not sure how to get out of the boringness of lying in the sensory room for over an hour each day, walking for maybe half an hour, and sitting on our ass the rest of the time. I don’t know whether that’s an entirely accurate picture of our day, but it feels like it is.

Clarissa

Fatigue (For Lack of a Better Word)

And yet again I did not blog for what feels like an eternity. To get myself back in the swing of things, I’m just opening the WordPress app and writing. I don’t know where this will lead.

I’ve been feeling off lately. Pretty fatigued. This is nothing new, even though when I talked to my staff about it, they originally wanted to chalk it up to my transition into the care facility.

The thing is, this fatigue thing or however to describe it, as well as what I can only describe as a slow decrease in cognitive energy, has been going on forever. I told my staff about it on Tuesday and told her I want to discuss it with the facility’s intellectual disability physician when I have an extensive introductory appointment with her in November. Not that I have an intellectual disability, but the physician wants to have an appt with me, so why not make use of it? That’s probably still going to happen, but the staff called the general practitioner anyway, because I have a history of vitamin and mineral deficiencies. The GP ordered bloodwork, of which I hope to get the results soon. I guess nothing’s up once again and that probably means that my vitamin B12 deficiency that I had in 2015 was indeed due to poor nutrition. Or something. I don’t know.

The annoying thing is, physically I appear fine. Intellectually probably too, simply because I have a lot of reserve. It’s easy to chalk this whole thing up to autistic burnout, but then again doesn’t one ever recover from that? And does it even get worse at the relatively early age of 33?

I still feel like a burden for raising this issue. I mean, yes, I’m more forgetful than I used to be, but I can probably still pass a mental state assessment. Besides, compared to my fellow residents, I’m like superhuman where it comes to independence. So yes, why even see the intellectual disability physician? But she wanted to see me, so yeah.

Last Tuesday, after I told the staff about my concerns, I felt very stressed. The staff was so very nice! She asked if I wanted to take a bath, but I initially declined, because I knew it was several other residents’ bath time. I know that I shouldn’t be filling in what other clients need, but well. Then she offered to take me to the sensory room at the day center. It was great. I still felt very unquiet mentally after it, but physically I could relax.

I’ve been using the sensory room more often these past few days. The staff in charge of the sensory group at day activities even bought me a blanket that’s mine alone to use when there. This kindness totally amazes me. Of course, I’m still waiting for the other shoe to drop, as I seem to have had so much experience of unhelpful support staff (to use an understatement) that I doubt there’s even ever a place where I can feel well cared for.