Work: Employment and Day Activities for People With Intellectual Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter W post in the #AtoZChallenge. Today, I want to discuss work and day activities for people with intellectual or developmental disabilities.

People with a mild intellectual disability and no additional problems can often work paid jobs that would otherwise be performed by typically-developing adolescents, such as filling shelves in a supermarket or being waiters in a restaurant. They may not be able to complete all duties required for these jobs, but in the Dutch system, if you can do a task that is part of a job and have minimal employee skills (such as coming on time, respecting authority, etc.), you are expected to join the mainstream workforce. I, thankfully, have not been judged to meet these criteria, but then again I’m lucky in that I’ve been on disability benefits since 2004. A few years back, I heard of a profoundly and multiply disabled woman at my day center who somehow was judged to meet the criteria. The work specialist had probably never seen her, as they said she could do simple manual labor, while she had severe spastic quadriplegia.

Alternatively, there are sheltered workshops for people who can work, but need to do things at a slower pace and need some more support than can be reasonably expected within the mainstream workforce. However, these workshops have been facing significant budget cuts.

When this, too, isn’t an option, you enter the world of day activities. Those still can be “work-like”. In fact, most day activities for more cognitively capable intellectually disabled people simulate a work environment. Some of these activities are truly meaningless, in that the staff will let clients fill the same boxes with a number of items repeatedly only to empty them again so that the client can fill them once more. I honestly have very strong opinions on this: if it’s truly what a person wants and there’s no way of making the activity actually meaningful, I’m fine with it. Otherwise, I don’t see why day activities need to be “work” and things like crafting or music can’t be day activities for more cognitively capable individuals.

For more severely disabled individuals, day activities are usually sensorially-based. This includes snoezelen®, which is being in a room where the sensory environment can be completely controlled to suit the individual’s needs. I actually love this, although only for about 30 minutes at a time.

Other activities include cooking and baking, with which the clients usually don’t really help (although some moderately disabled people can) but will experience the sensory stimuli associated with the process. For example, I used to attend a group for profoundly disabled individuals and, when we’d bake something with apples in it, the staff would massage the clients’ arms with an apple. Music, story time, and simple crafts are also common activities for this population.

I, personally, if I had to choose a day activities setting, would choose the one for more severely disabled people. I know I can’t really function in a group setting, which is why I’m stuck at the care home for now, but I honestly have zero interest in meaningless labor.

My Ideal Ways of Spending My Day

Posted on by Astrid

Hi everyone. I have been thinking about ways in which I would like to spend my days if I get to move to the main institution. Like I said yesterday, each client has their own day program, so they aren’t required to go to the day center by default. I also will keep my one-on-one support at least until December of 2023. In today’s post, I want to share my ideal ways of spending my days. These are things I might be able to implement should I remain here, but I’m dreaming big here and thinking of ways the institution could accommodate me too.

First, I would like to start my day in my room like I currently do. I don’t think I can handle eating breakfast in a group as of yet. That might change in the future. I would like to eat all my main meals in my room, but go to the living room for coffee breaks when I want to.

Ways I would like to spend my day, include crafting of course. I would really like to keep on doing my polymer clay work and maybe even sell it in the day center’s shop.

The day activities I am thinking the institution could help me meet my dreams with, are those related to sports and physical activity. I know the institution has a small swimming pool on grounds and I’d really like to use it. I’m not sure whether they might have exercise equipment too, like the type of equipment you’d find in a gym. If they do, I’d love to utilize that too.

The institution is in a rural estate area, so I’d love to go for walks on grounds. I’ll take my iPhone (by then, I might have a new one, who knows?) to take pictures of the beautiful nature.

I’ll hopefully at some point be able to take short walks on grounds on my own too. For that, I’ll need orientation and mobility training from the blindness agency, but I’m sure I can get that.

I may occasionally want to relax in a snoezelen® room. Then again, if I’m correct, I can keep my weighted blanket if I move within this care agency, so I might not even need a snoezelen® room.

I’ll probably also want to go to a day center every once in a while to socialize with other clients. The institution has three day centers I believe, but I’m pretty sure clients from the home I might go to won’t go to all three. That’s okay though, I’ll find out what suits me.

Gratitude List (October 22, 2021) #TToT

Posted on by Astrid

Hi all on this mixed-bag Friday weather-wise. It’s cloudy with some rain, but the sun tries to peek through here and there too. I seem to have given up on the blogging challenges entirely, but I’m still attempting to write as often as I comfortably can. Today, I’m doing a gratitude list. I’m joining Ten Things of Thankful (#TToT) as usual. Here goes.

1. I am grateful my staff, the one who is on sick leave, was happy with her presents. Like I mentioned before, I gifted her a handmade soap, hand cream and bracelet. Another staff delivered it to her house as to allow me to save money on postage. The staff who is on sick leave, later texted the other staff an audio recorded message for me. It was so sweet!

2. I am grateful for my nurse practitioner and community psychiatric nurse. On Sunday, I landed in a bit of a crisis and E-mailed them, along with my assigned day activities staff and my support coordinator. My nurse practitioner responded on Monday. Though I felt like he was downplaying my crisis a little, my CPN later said that she at least felt that I was doing well because I asked for help.

3. I am grateful my GP takes me seriously. This really could’ve been a grateful for last week, but I forgot to mention it then. As regular readers of this blog might know, I’ve suffered with what doctors think is irritable bowel syndrome with constipation for years, but it’s gotten worse and somewhat different over the past nine months or so. I saw my GP about it a few weeks ago and he initially sent me home with orders for the staff to fill out a rating scale on my bowel movements. Boy, was it embarrassing having to ask the staff to look at my poop! Thankfully, it did show that I hadn’t been misguided about my symptoms. Last week, we went back with the rating scale and the doc examined me again. After discussing me with the gastroenterologist, he decided to refer me for an abdominal X-ray. It’s been scheduled for this coming Tuesday.

4. I am grateful for my husband’s ability to put things into perspective. I have been worried sick (no pun intended) about the possible outcome of said abdominal X-ray. My husband though said that, since I’ve been having symptoms for as long as he knows me, it’s not likely to be anything serious.

5. I am still grateful for topiramate. The increased dosage does seem to do something in the end. Last night, I had dreams about leaving the care facility, but they do not seem to affect me as much as they used to. I call that a win!

6. I am so grateful for one-on-one support. I cannot say this often enough. I am so very grateful my staff aren’t leaving me when I’m in crisis.

7. I am grateful the chili con carne I had for dinner yesterday was better than I expected. I hadn’t had meal delivery company chili in a while since it’s part of their fall/winter menu. However, I’d remembered it as dry rice with dry beans and a tiny bit of mince thrown in. To my surprise, they’d actually added some sauce and there was more mince in it than I expected.

8. I am grateful that the people who were installing blinds on my side of the building, are finally done doing so. Originally, only the other side of the building had blinds on the outside, but some of my fellow clients suffered badly from the sun shining through their windows during the day especially in summer. It took the company several weeks of installing the blinds and they had to be in each room to program them too. Thankfully, they programmed mine to manual, not automatic. Otherwise, if it’s sunny, the blinds will go down, then if a bit of wind blows they will go up, then down again, up again, etc. I’d rather keep them up and just draw the curtains when it’s sunny.

9. I am grateful that, when they were working on my blinds this afternoon, my one-on-one took me to the snoezelen® room at the day center. After all, the noise was quite unbearable. I loved lying on the waterbed while there was no-one in the adjacent room. So nice!

10. I am grateful I had the energy to go on the elliptical for over 30 minutes this afternoon. When I first stepped onto it, it felt as though I’d hardly manage 15 minutes, but I did pretty well.

What are you grateful for?

Time-Out Rooms, Comfort Rooms, Snoezelen® Rooms: Special Care Rooms in Mental Health and Disability Services #31Days2021 #Blogtober21

Posted on by Astrid

Today, I’m not feeling too inspired. The optional word prompt for the 31-day writing challenge is “Comfort”. For some reason, probably the fact that I’ve been experiencing a lot of flashbacks to my time in the mental hospital lately, I was immediately reminded of comfort rooms. Then I thought, maybe I could use this post to raise some awareness of the different kinds of special care rooms used in mental health and disability services.

Back in my early days in the mental hospital in 2007, seclusion or isolation was pretty commonly the only intervention used, maybe in combination with forced medication, on disruptive patients. I was initially admitted to the locked ward only because the open ward had no available beds. During my first night in the hospital, I heard a lot of screaming and was later told that the staff “handled it appropriately”. Another patient told me that the screaming patient pretty much lived in the seclusion room. I was pretty scared out of my mind.

Once moved from my parents’ city hospital to my own city’s locked ward, I again experienced seclusion as a witness repeatedly. The ward I stayed on, was the less restrictive locked ward, so it didn’t have isolation rooms. Rather, ours were called time-out rooms, but that didn’t make them any better to be honest.

I experienced one hour forced time-out once, three months into my mental hospital stay. After that though, it was used as a threat repeatedly. This, for clarity’s sake, is illegal: seclusion can only be used to avert danger, not as punishment.

About three years into my mental hospital stay, some wards, particularly locked wards, started deconstructing their seclusion rooms and repurposing them as “comfort rooms”. A comfort room in theory looked nicer, as it had soft toys in it and maybe some special lighting. However, them being repurposed seclusion rooms did mean they still had the vibe of isolation about them. Indeed, the few times I was sent to the locked ward for a time-out once at the open resocialization ward, I spent my time in the “comfort room”. This did not feel comforting at all.

My last psych ward, which I spent four years on between 2013 and 2017, had both a comfort room and a time-out room. This comfort room was indeed actually comforting. There was an essential oil diffuser, a CD player, comfy couch and a few other things. What made it different though was the fact that you couldn’t be locked up into it. If you were to be locked up, it’d have to be in the time-out room.

At the end of my psych hospital stay, I first learned about snoezelen®. This, like I’ve explained before, is a method of helping people with significant intellectual or developmental disabilities by modulating their entire sensory environment. I wanted to experience what a snoezelen® room would be like. My psych hospital had an intellectual disability unit with a room like this, but my psychologist refused to let me visit it, claiming I’m far too capable for this type of activity. I stood my ground and got a place at my first day center with my current agency, which did have a snoezelen® room.

When I was at my first day center with my current care agency, the snoezelen® room was sometimes used as a time-out room for me, in that I was forced to go in there when I was irritable and not allowed to come out. Though the door couldn’t be locked, it did feel intensely triggering to me. It is one reason I still struggle to be in my current day center’s snoezelen® room if no staff is present.

Of course, I must say here that an old-fashioned time-out room has hardly any furniture: just a bed and a stool, both attached to the floor, as well as a toilet made of metal. The seclusion room the screaming patient from my first night in the hospital was locked into, was likely even worse. Comfort and snoezelen® or other sensory rooms are much better. Still, the idea that someone can be put into solitary confinement against their will, is rather disturbing if you ask me.

Five Activities to Do on Rainy Days #5Things

Posted on by Astrid

Hi everyone on this cloudy and chilly but dry Tuesday evening. Today’s prompt for the #5Things challenge is to share our favorite activities for rainy days. It hasn’t been raining much here at all lately – I guess we’re making up for a rather wet summer. However, the fall and winter usually are our rainy seasons here. I thought I’d participate and share some activities I love to do when it’s raining outside.

1. Listen to music. Contrary to some of the other participants in the challenge, I don’t like watching or listening to the rain. In fact, the sound of heavy rainstorms scares me. To drown out this noise, I like to listen to music, particularly upbeat songs.

Interestingly, I do occasionally love to listen to water sounds on my iPhone, but not specifically rain.

2. Read. When I can’t go outside because of the rain, it’s the perfect time to pick up a book and read. I read a wide variety of books, but, as regular readers of my blog will know, I mostly enjoy memoirs and realistic young adult fiction.

3. Craft. Rainy days are also the perfect time for crafting. Now that it’s not raining as much anymore, I can totally see my creative juices drying up a bit.

4. Chill out. I look forward to relaxing in my recliner, which my husband cleared of most of the stuffed animals and other things that were cluttering it last Sunday. I also love to take extra naps or just chill out under my weighted blanket. Since the day center reopened, lastly, the snoezelen® room is also now available to me at times. All of these activities are especially great for rainy days.

5. Enjoy a hot drink. Particularly hot cocoa, but coffee or green tea will do as well.

What do you like to do when it’s raining?

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

Posted on by Astrid

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

Posted on by Astrid

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 (December 12, 2020)

Posted on by Astrid

Hi all on this rainy Saturday. I am feeling so grateful for a lot of things right now. Let me share! I was going to be linking up with Ten Things of Thankful, but then I saw the linky isn’t up this week. This isn’t holding me back though.

1. I am grateful for the staff who supported me through my crisis on Sunday.

2. I am grateful for my physical health. This should always be something I’m grateful for, but I’m specifically listing it today.

3. I am grateful a fellow client who had cold symptoms tested negative for COVID. I was very worried already when I found out he was in isolation yesterday. The staff weren’t notified of his negative test results until mid-afternoon today.

4. I am so grateful the above means we aren’t in isolation at our care home as of yet. This means that my appointments with mental health for the coming weeks can go forward (unless I or a fellow client develops symptoms suggestive of COVID, of course).

5. I am grateful for my husband, as always. We have been talking more than we used to over the past week and that’s truly a blessing.

6. I am grateful to be able to read the Bible on my phone. I now have a six-day streak on YouVersion and am hoping to get to my first perfect week tomorrow.

7. I am grateful to have found and consistently listened to First United Methodist Church of Austin’s sermons.

8. I am grateful there still was a meal I liked in the freezer this evening. I am a rather picky eater and I didn’t like what I had for dinner this evening. Then I microwaved another meal we had in the freezer, but the rice got all weird from microwaving it straight from the freezer or something. I feel pretty bad for having thrown out two meals to finally accept a third one, but well, I can’t change it now. All I can do is try to train myself to be a less picky eater in the future.

9. I am grateful for paracetamol. My feet cramped a little (well, a lot) this evening, but thankfully the pain is pretty mild now that I took some paracetamol.

10. I am grateful for the sounds of nature CD I listened to in the sensory room this evening.

So what are you grateful for?

Gratitude List (December 5, 2020) #TToT

Posted on by Astrid

Hi everyone. I hope you’re well. Last week, I said I’d like to make gratitude lists a weekly habit again. Here goes. As usual, I’m joining in with Ten Things of Thankful (#TToT).

1. My mood being slightly better than it was last week. I seem to be slowly climbing out of the pit of depression and overload. I am still in crisis multiple times a week, but it’s no longer an almost-daily occurrence.

2. St. Nicholas. This is celebrated today here in the Netherlands. Usually, kids get gifts then. We no longer celebrate it in our family and my niece is probably too young to understand the concept too. We don’t really celebrate it in the care facility this year either. However, we do have lots of special St. Nicholas candies.

3. My mother-in-law. She visited me on Thursday, which was good. I really had a good time.

4. Reading. Like I said earlier, the second novel in Kenneth Oppel’s trilogy is out this week and I immediately downloaded it off Bookshare. It’s a true page-turner.

5. Playing cards. I love to play the game of mau-mau or “bullying”, as it is called here.

6. A rainbow-colored ball. I can’t remember how I got it, but it’s among my toys. I have been loving throwing it back and forth with the staff.

7. The snoezelen® equipment we got at the home now. I may have said before that there’s an empty room that the staff had turned into a snoezelen® room when the day center closed. Then we got a client temporarily placed in that room, so its sensory equipment had to be removed. That client left though and it’s unlikely we’ll get a new placement anytime soon. So our staff bought some more sensory equipment. We now have a special sensory bed with speakers installed in it. I lay on the bed yesterday and loved feeling and hearing the soothing music.

8. Getting to the psychiatrist sooner than expected. Originally, I heard me appt isn’t till sometime in January. Thankfully though, the psychiatrist had a cancellation or something, so I was fitted in for December 22. Though my mood is slowly lifting, I am still glad I can see her.

9. Essential oils once again. Okay, I’ve shared about those before, but I keep discovering new blends. Yesterday I had one that included geranium and I hated the smell. I quickly emptied the diffuser though and then tried another blend.

10. Sleep. I haven’t had nightmares in a week or so. At least not ones that haunt me during the day. That’s definitely a win!

Yay, I got to ten. I know some are repeats, but that’s okay. And at least I didn’t include a ton of food-related thankfuls.

What have you been grateful for lately?

Gratitude List (March 20, 2020) #TToT

Posted on by Astrid

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?