Whale Sounds #SoCS

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”.

Weird or Creepy Interests

Today I have a lot on my mind, but not much I can put down into writing. To occupy you readers anyway, and to distract myself a bit, I’m participating in My Inner MishMash’s Question of the Day. The question is whether you have any interests most people consider weird or even creepy or gross.

Creepy or gross, no. I mean, yes, I’m interested in medicine, but not specifically in anatomy or bodily functions. I have some interest in genetic conditions, particularly rare ones, and of course I’m into psychiatry. Lately, I’ve been connecting the two and learning more about psychiatric aspects of genetic syndromes. I was fascinated when I was told one of my fellow clients has Christianson Syndrome, a form of X-linked intellectual disability that is similar in presentation to Angelman Syndrome. I at first felt weird googling the condition, but since the staff specifically told me about this client’s syndrome rather than me having overheard it, I felt okay in the end.

Weird, yes, definitely. I already commented on the original post that I’m into calendars and timekeeping. I still keep and cherish a twenty-year-old newspaper article explaining why the year 4000 shouldn’t be a leap year, among other things.

I also tend to get upset when people make calendar calculation mistakes, particularly when they do it on purpose. My husband likes to talk about 30th February, for example. As a teen, I used to calculate what day a given date fell on. I was particularly fascinated by dates before 1582, so that I could show people that I knew about the Julian/Gregorian calendar transition.

I also, when I still lived in Apeldoorn, loved riding random buses to memorize their route. Apeldoorn’s buses at least all used to go in an eight-shaped route, each time getting back to the station. That way, I’d never get lost even if I rode a bus I’d never been on before. Before I moved to Nijmegen, I had the bus schedule nearly memorized too.

Currently, I don’t have any weird or unusual interests that I’m particularly actively engaged in. However, when it comes to my “normal” interests, they do tend to be abnormally intense and detail-focused.

Do you have any weird interests?

A Letter Explaining My Life Right Now

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

A Mixed Monday

Today is a truly mixed bag! I started out feeling relatively well. The flu seems to finally have left me, although I still sound a bit hoarse. Then in the morning I ate just a little too much sugar-free liquorice. This type of sugar-free liquorice has manitol in it, which works as a laxative. If I eat moderate quantities of liquorice, I’m totally fine, but if I eat too much, I get like the worst diarrhea imaginable. I thought I hadn’t eaten ntoo much, but apparently I had. If my husband reads th is, he’s going to say he warned me.

I was still relatively okay during the morning. Went for a short walk. Then in the afternoon I didn’t feel well. This usually affects my mood before I’m even aware I’m physically unwell. I started to get really frustrated with how quickly my iPhone battery level would go down, which honestly isn’t that quickly at all given it’s an older model. Then I started to get annoyed with my fellow clients’ sounds. My fellow clients are all non-speaking, so it really is no wonder they make sounds. Just because I can’t understand them, doesn’t mean they need to shut up. Finally then I got annoyed with my staff having mindless chatter while I was trying to indicate I wanted help finding something to do. I found a simple shape-sorting task eventually, but it didn’t satisfy me. In this sense, it frustrates me that I need the level of support and low-stress environment geared towards people with severe intellectual disabilities, but at the same time need much more stimulation. My range of understimulation and overstimulation even seem to overlap a lot, so that my window of tolerance is very narrow. I try to tell myself I just need to accept boredom if I want to keep my level of support, for if I am judged to be too much of a handful, the result is likely that I get less support. That being said, telling myself not to be a pain in the neck doesn’t mean I actually am not a pain.

Finally, I started talking to my assigned staff. We agreed to try out soap making again someday soon. It’s something I enjoy and is a relatively quick activity even if I need hands-on assistance, that will nonetheless satisfy me for a while. I will ask my husband to bring my soaping supplies when he next visits me.

When I returned to the care home, I browsed my favorite soaping supplies store. I was talking to my assigned day activities staff about also knowing how to make lip balm. That’s an even easier activity that can be made more complex by using individual oils and butters rather than ready-made lip balm base. While browsing the store website, I came across a starter kit to make your own bath bombs. I’ve been wanting to do that forever, but since the goal up till recently has always been full independence, I thought this wouldn’t be a suitable activity. When I get back in the swing of soaping, I may buy myself the starter kit. It has some supplies I already have, such as colorants and fragrance oils, but you can never have enough of those. We have a bathtub at the care facility, so I’ll actually also put them to use.

In the evening, I was so excited I wanted to tell my home staff about the soaping idea and the bath bomb craziness. Then however the staff were talking among themselves for like an hour. They weren’t talking about clients, but still I beat myself up over wanting to interrupt them. That led to more frustration and overload and I eventually ended up banging my head. I feel incredibly annoyed with myself for being an attention-seeker like this, even though I didn’t act out when I thought the staff were looking. They eventually were though. Now I’m not sure whether this will eventually be used against me to kick me out. The staff said no, I won’t be kicked out, but in the end if I don’t change will they not reason life isn’t better in the facility for me? It is better, generally speaking, but I still struggle a lot.

Nuts! #SoCS

I first heard about the details of the Care and Force Act in the Netherlands a few days ago through a fellow mental health advocate. I’d heard of the bill being passed before, but never quite understood or cared what it entailed. Now I know, from both her opposing side and thesupporting side, namely my own long-term care organization.

As it turns out, the Care and Force Act impacts everyone who receives mental health or developmental disabilities services, whether voluntarily or not. Before this law, only those committed involuntarily to a psychiatric hospital, psychogeriatric nursing home or intellectual disability facility, could be subjected to involuntary care. Now, basically everyone who receives (or, I assume, is supposed to receive) care for a mental illness or developmental disability, can be subjected to involuntary care. Yes, even if you live at home. Support staff are allowed by this law to enter someone’s home without their permission and hold them down there, force medications on them, install cameras for monitoring the client, etc.

This all sounds pretty nuts to me. Of course, that’s what said mental health advocate said too. My care facility says that forced care is not allowed unless… and then they go on to list the law’s reasons involuntary care is allowed. This is a long list, including obvious reasons such as self-harm or aggression, but also “endangerment of the person’s development”. Well, WTF?

I understand the well-meaning intentions behind the law. For example, a client with Prader-Willi Syndrome, which makes them eat and drink without inhibition, can be prevented from accessing sources of food or drink. The long-term care facility said in this case (in a flyer by my care organization) they’d decided to disable the client’s bathroom tap so that they cannot drink like 5 liters of water at night. However, quite possibly, this could be affecting people like me who suffer with compulsive overeating. I am sensible in that I try to ask for help in preventing binges, but I mean, I’ve heard clients being told not to enter the kitchen because they eat lots of cookies and are prediabetic. Well, this is physical health, which I understand on at least some level. But isn’t this whole bill meant to make us all conform to the non-disabled standards of “normalcy” whether we want to or not?

And besides, there are huge budget cuts to mental health and disability services, so will this bill not just be used to facilitate lower levels of actually helpful care?

For example, I could in a worst-case scenario be confined to my bed at night so that I have fewer reasons to bother the night staff when I go to bed later than most other clients. Or I could be banned from using Facebook or the Internet altogether during certain times of the day for reasons such as my needing to socialize more, study, or whatever. Like I said, danger to one’s development is a grounds for forced care.

In theory, the law doesn’t sound too bad, but I can imagine treatment providers such as the ones in the mental hospital, whom I couldn’t trust, can misuse this law for very harmful purposes. Does this mean anyone deemed nuts or dumb, to use some slurs, is at the mercy of the so-called helping profession? It’s crazy!

This post is written for #SoCS, for which the prompt this week is “Nuts”.

Why I Am in Long-Term Care

The day 1 prompt for this year’s 31-day writing challenge is “Why”. I immediately thought of the question that keeps popping up in my mind whenever I meet someone new at the care facility: Why am I in long-term care? Today, for example, I met a student doctor who was touring our home. I informed her midway through our conversation that I don’t have an intellectual disability, to which she replied that she could tell. Well, duh! Even when I’m overloaded, like I was at the time, and experiencing pretty bad language problems, I still sound like someone with at least an average IQ.

So why am I in long-term care? To a casual stranger, I could just point to my lack of sight and they’d be satisfied. Not a doctor or even a medical student, I guess. The medical advisor for the funding agency understandably concluded that blindness alone doesn’t warrant 24-hour care. Neither does mild cerebral palsy. And, as regular readers of this blog know, autism, being seen as a psychiatric condition, doesn’t count.

They finally found a way around this situation by saying that my disabilities are intertwined. They are, of course. In multiple disabilities, the whole is more than the sum of its parts. For this reason, the short answer to why I’m in long-term care is because I’m blind and autistic and have mild CP, not because I have any of these alone.

This is the legal answer. The way the funding agency found around the stupidly close-minded look at disabilities the law requires medical advisors to have. The long answer is, of course, that my individual care needs mean I need 24-hour proximity of care.

I have significant executive functioning issues. These cannot be objectified by tests because I’m blind and the tests of executive functioning that are available, are all visual. For this reason, the medical advisor wrongly concluded that I don’t have cognitive impairments. I don’t have an intellectual disability, but that’s not the same.

These executive functioning difficulties make it hard for me to take care of myself. I can do basic self-care activities with reminders and prompting, but then still I often mess up.

People, including my support staff, have used my blindness as an excuse for my difficulty with basic self-care. Of course I can’t see when my clothes are dirty, but if I were just blind, I would be able to prevent the most common causes of my clothes getting dirty. Like, I would be able to prevent myself from drooling over them, or I would be able to find other ways around it.

People also use my blindness as an excuse for my needing proximity of care. If I were just blind though, I would still struggle to know when staff had left the room, but I wouldn’t feel overwhelmed by it.

But I’m not just blind. Had I been just blind, I wouldn’t have needed to apply for long-term care. And yet, paradoxically, my care ground is blindness.

At Every Age

There’s so much I want to write about, but I can’t get myself to sit down and actually write. Well, sitting down is not the problem, as I’m probably still a pretty sedentary person, but actually writing is.

Today, I”m joining in with Finish the Sentence Friday (#FtSF). This week, the prompt is to write about your (or your child’s or whoever’s) favorite age.

I used to think being younger was better. I don’t really know why. Maybe I was conscious at an early age of the fact that life is finite, so growing up meant getting closer to death. I also thought that growing up meant an increase in responsibility, which scared me from an early age on. After all, I knew from as young as age nine on that I was supposed to leave the house and go to university by eighteen. That’s a huge burden of awareness to carry as a child that young.

Now I think being at every age has its beauty. I do worry that I’m declining in health already, and this is where the sitting down comes in. I really need to get more active, because I know that at every age, you can do something to improve your health and wellbeing.

I also think that, at every age, you can retain or regain some level of childlike wonder. We see this in the alters, who each represent a particular stage in development. Some are grown-up for their age, like Jace, the 9-year-old who was told about going to university and leaving the house. Others are more childlike, like Milou, who is 8-years-old and very playful. We also have an adult, Marieke, who, though she’s 32, enjoys sensory learning and play.

In my fellow clients at day activities, I also see the beauty in every age. They are intellectually disabled, most with a so-called “mental age” under six. Now the concept of “mental age” is highly ableist. However, learning about normal child development can teach us some interesting things about myself and others with developmental disabilities anyway. I was intrigued to read about emotional development as it pertains to people with mild intellectual disability and as it pertains to me in some way too. The consultant psychologist assigned to my case in my care-finding process, said I function emotionally at a 16-month-old level. This explains a lot of why I act the way I do. Interestingly though, we don’t have an alter who identifies with this age.

In short, I think every age and stage in development has its beautiful sides and its ugly sides. Childhood means your parents still have a lot of control over you, but it means you have relatively few responsibilities. Adolescence and young adulthood come with increased responsibility and freedom. I don’t know yet what middle age or old age will bring, but I’m confident I’ll find the beauty in it.

Progress in Finding Long-Term Care

It’s been exactly six weeks since I got approved for long-term care, so that we could finally start finding me a supported housing facility. Things are moving slowly but steadily. Today, let me share how we’re doing.

Immediately after we heard I was approved for long-term care funding, my support coordinator contacted the care consultant for my current care agency. She made sure to get the paperwork in order so that, while we’re waiting for supported housing, I can retain my current support. After all, community support through the local authority was immediately stopped. My support coordinator also contacted the care consultant for the living facility in Raalte, which is with my current care agency too.

When it turned out the process with that living facility would be slow-moving, I proposed to contact the two blindness agencies to explore the possibility of my living there. One of them responded immediately with an appointment for an intake interview. This is, unfortunately, the one with the facilities in the far north and south and west of the country. Of course, we are talking the Netherlands, not America. However, my husband isn’t happy to travel up to two hours each week to visit me. We agreed on a maximum distance of one hour. This agency has nothing within an hour’s driving distance. We did however request that they help us by recommending accommodations a future living facility could make for my blindness. They will come by to observe me at day activities next week.

The other blindness agency has my file, but they haven’t yet scheduled an appoitnment to meet me.

I went to have a look at the facility in Raalte last week. It was great. The staff/client ratio is 1:6 to even at times 1:4 during the day and there is an awake night staff. They also have tons of sensory supplies, including a sensory room, rocking lounger and a bathroom with a tub. I will hear more about whether the psychologist and physician for this facility find me a good fit soon.

Then today I heard about another facility. It is with a countrywide Christian care agency. It is in the city of Ede, which is about a 45-minute drive from my current home. The facility primarily serves elderly people with intellectual disabilities. I don’t know whether that would be a problem. It might be, as the other clients are probably a lot less mobile than I am. Clients only have a bedroom to themselves, but I don’t mind. The care consultant would send my file to the psychologist for this facility too and then I may come for a tour.

It all makes me feel a bit confused but overall excited too. I mean, I still feel off applying to live in intensive support living facilities, being that I now live semi-independently. Of course, my husband does all of the housework, but still. It’s hard to believe that people suddenly aren’t rejecting me, saying I misuse care and leaving me to my own resources.

Things I Do at Day Activities

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.

Long-Term Care Assessment

I’ve been wanting to write much more lately, but somehow, I can’t get myself to actually sit down and write. I remember originally posting twice a day almost everyday when I started this blog, and now I’m barely writing twice a week.

I still need to update you all on the meeting with the long-term care funding person. She wasn’t the physician but the one actually making the decision on funding. The physician may still need to contact my psychiatrist in order to advise this person on funding.

She asked a lot about my level of independence in various situations. Like, she asked whether I can cook or clean the house. I was expecting her to ask about much more basic self-care skills like showering. She did ask about those too. I don’t know whether it’s a good thing or bad that she didn’t go into that much detail about my basic self-care. I mean, those are things I at least try to do myself, even though I fail miserably at them. I thought it should be obvious that I can’t cook or clean the house.

The funding person asked multiple times whether I’d had independence training. I couldn’t go into too much detail about that, but I did make it clear that I got tons of it. I also think I explained that the skills didn’t generalize to a new situation, such as living independently.

The funding person said she may want me to get some type of test for emotional development. There is a questionnaire called SEO-R that I think support staff or others involved with the client fill out to determine at what level a client is emotionally. I googled the descriptions of the different developmental stages. In some respects, I would really be like a 6-month-old, while in others, I’m closer to 7 years. I didn’t recognize myself in the most advanced stage, which corresponds to children age 7 to 12. There is probably a stage for adolescents too, but this scale was originally intended for people with mild intellectual disability, who by definition don’t reach this stage. I know the whole concept of mental or emotional age is ableist, but as long as it’s not used to actually infantilize clients, I think there is some use to it.

The intent of this scale being administered in my case is to maybe qualify me for an intellectual disability care profile. The funding person wasn’t impressed with my IQ anyway. I mean, it was measured as being 154 some twenty years ago, but was measured as at least 35 points lower in 2017 and with a ton of discrepancies. Like, I scored high on calculus, but slightly below average on comprehension. Besides, I didn’t say this, but only the verbal part of the IQ test could be administered because of my blindness. I liked it that this person didn’t see me as some sort of genius.

At the end, my support coordinator tried to explain what we’re going to do with the funding if we get it. She explained about the living facility we visited last week. I got a little unquiet at this point, so the funding person offered to talk to my support coordinator on the phone later. She never did. I don’t know whether that’s a bad thing or not.

I’ve been really stressed out these past few days. I dream almost every night about possible outcomes of this assessment. Like, will I get funding based on blindness or intellectual disability? Or will the funding people decide mental illness is my primary disability and deny me funding because I need treatment for that first? And if I get funding, will I get into the place I visited last week? I hope I will, but I’m not getting my hopes up too high yet.

Now my support coordinator is on vacation and won’t be back till the 27th. I think the funding decision has to be made by then. My support coordinator asked me to text her when I heard about the decision, so that she can bring cake if I get approved. Again, not getting my hopes up.