What’s Up (May 2020)

Posted on by Astrid

Today, I discovered What’s Up Wednesday and thought I’d join in. What’s Up Wednesday is a monthly linky in which bloggers recap their past month. Here goes.

What I Ate

I don’t meal plan, as here at the care facility, we get meals delivered. I didn’t have the greatest meals this past week. Last week Wednesday, I had a fish curry that had fish bones in it. I ate part of it nonetheless, but eventually got annoyed and left the rest. My husband told me that this was unacceptable indeed. My staff sent out a complaint.

Then on Friday, I had vegetable rice only. Vegetable rice is just rice with a tiny bit of veg in it. I had no meat or meat substitute in my meal at all.

Thankfully though, over the past few days, the food was okay.

Then yesterday, my day activities staff and I put hamburgers on some type of grill for lunch. It was delicious!

What I’m Reminiscing About

I haven’t had the best month with respect to my mood. For this reason, a lot of memories have come up. I have been discussing some in my sessions with my community psychiatric nurse and also writing about them on here.

What I’m Loving

Being able to see my husband again! Due to the coronavirus lockdown, my care facility had a no-visitors policy for the past two months. Thankfully though, the policy was lifted last week. My husband and I still can’t have physical contact or even be within a five-feet distance, but it’s okay. I’m just so glad to meet my husband in real life again.

What I’ve Been Up To

I’ve been doing a lot of walking over this past month. The weather is really good. We had one rainy day, last Sunday, but overall it’s been really sunny and warm outside.

I’ve also been blogging a lot over the past month. I’m so glad to keep up the productive spirit!

What I’m Dreading

Nothing really. I did have a rough few weeks and was dreading a crisis happening again. Today is a pretty good day though. The tech guys installed the door sensor that will alert the night staff if I elope again today.

What I’m Excited About

Seeing my husband again this Saturday!

I’m also excited about getting Italian takeaway this Sunday. I’m probably going to get a tuna pizza.

What We’re Doing This Weekend

It’s a holiday weekend here in the Netherlands because of Pentecost. For this reason, we’re getting lots of extra treats at the care facility. Other than that and seeing my husband, I don’t have much planned.

What I’m Watching

Nothing to be honest. I’ve been thinking about getting a Netflix subscription again, but haven’t gotten down to it.

What I’m Reading

Nothing at the moment, but I did finish two books this past month: Wonder by R.J. Palacio and Wink by Rob Harrell. I reviewed that last one earlier this month.

What I’m Listening To

I’m mostly listening to the Pop Warm-UP 130 BPM playlist on Spotify. I actually love the upbeat, fast-paced tunes to “dance” to.

I also got myself a ScribD subscription, though I unsubscribed again after a few weeks. I listened to Anne of Green Gables as an audiobook on there. I must say I don’t think I see the benefit of audiobooks.

What I’m Working On

My birthday wishlist! I asked my husband to help me install a new iPhone that I’m goign to buy. I haven’t bought it yet, but am looking forward to doing so in a few weeks.

I’ve been looking at a sensory supplies store again for birthday gifts to ask my in-laws, parents and sister. I think I want a Jinglin’ ball. This is a soft ball that makes a sound when rolled. The adaptive supplies store for the blind also sells ringing balls, but these are too hard for safe playing with my fellow clients.

What I’m Wearing

Orange Dress

I have had this orange dress for a few years already, but hardly ever wore it before going into the care facility, because I can’t fasten the ribbon. I am loving it though. I also asked my staff to do my hair for this picture.

What I’m Looking Forward To Next Month

My birthday, obviously! It isn’t till the 27th of June, so we’ll have another What’s Up Wednesday before that, but oh well.

What Else Is Up

I think that about covered it.

Weighted Blankets: Sensory Activities for Self-Care #AtoZChallenge

Posted on by Astrid

Welcome to my 23rd post in the #AtoZChallenge. For the letter W, I choose to write about weighted blankets and other sensory equipment that can help you take good care of you.

I don’t own a wweighted blanket myself. At my old day activities, a staff member made one for use in the sensory room though. It wasn’t ideal, as the weighted compartments wouldn’t stay in place. I loved it though.

I remember clearly how I discovered the good deep pressure can do for me. I was at the first day center I went to after leaving the psych hospital in 2017 and the staff were talking deep pressure as it related to another client. I was at the time already struggling seriously at this day center and at a point where I was looking for another place, but the staff were still trying to be helpful. I asked them whether I could try some weighted products. They handed me a weighted turtoise soft toy. From then on, I’d often have it in my lap during mealtimes and when I was stressed.

Later, once already at my previous day center, I got a weighted unicorn soft toy for Christmas. It was probably originally intended as a door stopper that keeps a door from accidentally banging shut. This one is filled with sand rather than pebbles and it is not wide enough to cover my entire lap. However, it’s cool.

Other sensory products can help with stress relief too. I have a wobbly pad (not sure that’s the correct word) to sit on. I also have a fitness ball that I generally just sit or lie on.

A few months ago, I discovered fidget toys. I think the hype about them a few years ago was exaggerated, but they do help some.

There are tons of other sensory products that can help you calm down or relieve stress. I’m pretty sure I haven’t discovered all that is available.

#AutisticBliss Is…

Posted on by Astrid

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?

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”.

Fatigue (For Lack of a Better Word)

Posted on by Astrid

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.

#WeekendCoffeeShare (September 29, 2019)

Posted on by Astrid

Hi everyone, how are you doing? I have had a for me incredible amount of coffee for a Sunday today, so am feeling pretty energized despite it being nearly 9PM here. This evening though, I chose two cups of green tea and two apple and peach flavored soft drinks. Anyway, I’m joining in with #WeekendCoffeeShare again.

If we were having coffee (or green tea or a soft drink), I’d share that my transition into the care facility went relatively smoothly. I moved in on Monday. I do miss my husband, obviously, but am mostly enjoying my time being here. I feel, overall, a lot more relaxed than I did when still living semi-independently.

If we were having coffee, I’d share that the house-buying process was finalized last Wednesday. As I said in my previous post, the paperwork was somewhat stressful as I couldn’t read or sign the agreements due to being blind. That got sorted though thanks to a very accommodating solicitor.

If we were having coffee, I’d share that my husband has been very busy doing odd jobs in the new house. I muted the house-related WhatsApp group because, not being there, I couldn’t conceptualize what all was being done. However, I guess in a few weeks, I’ll like it in the new house. I saw it for the first time on Wednesday before we saw the solicitor and it’s larger than I expected.

If we were having coffee, I’d share that I’m excited for my husband to come over here on Thursday. He originally said he’d come by either MOnday or Friday, so since I hadn’t heard a thing yet, I assumed he was coming on Friday. Today he said though that, after the final inspection and handing in the keys to our old house, he’d travel my way. He said we could have lunch at an Australian restaurant that’s in a nearby town.

If we were having coffee, I’d share that I am totally in love with all the sensory equipment at both the day center and the care home. At the day center, there’s a snoezelen® room. I spent some time on Thursday lying next to the bubble unit and on Friday lying on the waterbed. At the home, there’s a room with a rocking lounger. The staff also retrieved a kind of teeter board from another client’s room. That client has a swinging chair that’s hers but I was allowed to sit in it in her room for a bit.

If we were having coffee, I’d share that the care facility food is pretty good. I got mashed potatoes twice this week, which is one of only a few things I truly can’t stand, but they were able to swap my meal with someone else who didn’t mind mashed potatoes. My husband would say I’m a pretty picky eater, as I also had instant noodles one day when we actually got spaghetti carbonara. I think I can make myself eat that though and I won’t put it on my dislike list unless it’s very easy to do so.

If we were having coffee, lastly I’d share that I did have a relatively good amount of physical activity this past week. I don’t have my elliptical yet, as my husband will be delivering it on Thursday, but I did go for some walks. I don’t use my Fitbit right now, as I can’t find its charger and I don’t want to be discouraged by it, but I do feel pretty good about my activity level. I am eating pretty well. Now I guess I do still get too many calories for the amount of exercise I get, but I will hopefully soon find ways around that. At least I haven’t really craved binge food much. Finally, I also made time to do mindfulness meditations most days.

How was your week?

Things I Do at Day Activities

Posted on by Astrid

This is my third attempt at writing a blog post for today. I started writing a random ramble, then started sharing ways to relax. While writing about that, I noticed I was explaining all about the snoezelen® room at day activities. I then wanted to write more about things I do at day activities. So here goes.

Usually, I start the day with a cup of coffee. The staff drink coffee in the central area of the day center before the clients arrive, and since I usually arrive early, they offer me a cup too.

Then, when I go to my group’s room, the other clients arrive and the staff help them unzip their coats. They also read the other clients’ diary, in which their home staff write about them.

I usually do a table-based activity first. This involves sorting tasks, construction play, etc. I particularly enjoy shape-sorting activities.

At 9:30, the second staff for the day comes and we drink coffee. Then, we each go to the bathroom. After that, there are set activities for most mornings. On Monday, I go for a long walk with another group. At my group, the other clients play some games and do other table-based activities. They go for a short walk when the other group returns.

On Tuesday, I go swimming every other week. The day center’s people have the pool to themselves then and most clients have an assigned volunteer or staff to help them. The other week, a volunteer comes to our group and we run some errands.

On Wednesday, we have a cooking activity. For this, another volunteer comes. We generally do some really simple cooking. Since it’s a busy day, the staff really do most of the work. I feel sad that they don’t really involve us much. Of course, watching is cool too.

On Friday, we go to the marketplace. Each of us brings some money and we buy something that everyone likes. Sometimes, it’s fish, while other times it’s a bread roll, fruit or salad.

On each of these activities, the staff can’t take all of us. As such, we take turns going with one staff to do the activity, while the rest do table-based activities with the other staff.

Some people also love the snoezelen® or sensory room. I for one do. The sensory room has a water bed, but also a bubble unit, which is a water-filled unit which makes bubbly noises and has floaty objects in it that you can look at. There are also several tactile boards with all kinds of textures on it that you can explore.

Most people also love listening to music. On Wednesday afternoon, a music therapist comes to our group. I only attended this once, as I normally have the afternoon off on Wednesday, but I love it. The group also owns several tablets, a CD player and a TV to listen to music on or watch videos on.

I currently go to day activities two afternoons: Tuesday and Friday. On Tuesday, we have no set activity for the afternoon. This can get a bit boring, as staff usually spent most of the time writing in people’s diaries and doing administrative tasks. On Friday, I and two other clients go horseback riding with one staff.

At 2:30PM, we have a cup of coffee again, After that, most people hang out some and are getting ready for the bus home, even though we won’t be picked up till four o’clock. On Friday though, we have a dance at another group which everyone from the entire center is invited to.

There are four groups at the day center. My group is for the most severely intellectually disabled people. Another is for the elderly. Then there’s one for people with autism and others who need a lot of structure. This is the group who go for the long walk on Monday. The last group is for relatively capable people. They do kitchen-based tasks like loading the dishwasher. They also do creative activities.

Like I said, I’m in the group for severely intellectually disabled people, even though I’m not intellectually disabled. The reason is I need a lot of support and no pressure to achieve. I can visit other groups if I want to though.

Gratitude List (February 2, 2019) #TToT

Posted on by Astrid

I didn’t write much this past week. Not because I didn’t have anything to share, but because somehow the words wouldn’t make it onto the page. I had an extremely eventful week, which I will share more about later and which I already shared a bit about last Wednesday. Today, I’m going to write a gratitude list for the past week. As always, I’m linking up with #TToT.

1. My shoulder pain being almost over. Like I said two weeks ago, I suffered a small collarbone fracture. Yesterday was the last day of my strong painkillers. I had wanted to quit them earlier, but my husband said not to be too hard on myself. Today though, I only took two paracetamol and am more or less fine. Granted, I didn’t do a lot of repetitive work, so after I’ve finished this post, it’ll probably hurt more.

2. Being able to exercise again. I went on the elliptical for a total of 35 minutes yesterday. I did take breaks, but I felt my legs more than the injured arm.

3. Sensory activities. I already shared last Wednesday about the living facility I might go into that has lots of sensory supplies. Seeing this inspired me to explore the sensory equipment at day activities more. I found a large cylinder which you can roll on. I also spent time in the small (almost too small for my overweight body, but not yet) indoors cocoon swing.

4. Buying my Macbook. I haven’t unboxed it yet, but I’m glad I finally put one foot in front of the other and bought it.

5. Stuffed animals. Today, I experienced severe overload and had a meltdown while at my in-laws. My mother-in-law brought me a huge collection of Disney soft toys and other stuffed animals. I loved them.

6. Sleep. I didn’t sleep well early in the week. Thankfully, towards the end of the week, I slept better.

7. Getting some delicious treats for myself on Thursday. Some were healthy too, like blueberries. Some were not (liquorice!) but I loved them nonetheless.

8. The day activities staff treating us to some special food on Friday. She decided to spoil us, so for lunch on Friday, we had croissants and some salty crackers with cream cheese and olives. I went to the marketplace to buy them with this staff.

9. My husband. I need to be extra grateful for him because this past week has been stressful.

10. My support coordinator, whom I saw four times this week.

What have you been grateful for this past week?

Gratitude List (January 4, 2019) #TToT

Posted on by Astrid

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?

Gratitude List (December 21, 2018)

Posted on by Astrid

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.