Gratitude List (October 14, 2022) #TToT

Hi everyone. I’m still struggling a little, but this means it’s all the more important I look at the positives of my life. For this reason, I’m joining in with Ten Things of Thankful for a gratitude list. Here goes.

1. I am grateful my support coordinator is back in the home today after several weeks of being either off work or busy with out-of-the-home duties.

2. I am grateful the staff whom I had a huge issue with last week – the details of which I won’t disclose on the blog -, hasn’t been working here since.

3. I am grateful my support coordinator offered to sit with me and said staff to talk things over so that I can let them go. We aren’t yet sure when this can take place.

4. I am grateful I found out an oven/microwave combo works for polymer clay after all, provided you set it to its oven setting. This means I will most likely be able to use my home’s oven for polymer clay.

5. I am grateful for a nice visit from my mother-in-law on Tuesday. I am also grateful I was able to walk for an hour during said visit.

6. I am grateful for green tea without any additional flavors. That’s my favorite tea, or maybe really it’s the only tea I’ll drink. I am grateful the staff ordered it.

7. I am grateful for relatively nice weather. It’s been raining a bit over the past few days, but not all day, so I have been able to take walks every single day this week.

8. I am grateful for some distraction in the form of a few games of mau-mau, a card game, with my one-on-one. I was even able to teach one of my staff the game and he beat me to it.

9. I am grateful I tried penne carbonara on Tuesday, since it turned out I actually sort of like it.

10. I am grateful I usually get along with all my fellow residents here at the home. Of course, we all have our issues and it’s an intensive support (ie. behavior) home for a reason, but for the most part they’re nice people.

What are you grateful for?

The Wednesday HodgePodge (October 12, 2022)

Hi all. I haven’t been around in a few days and am not too motivated to write. However, I don’t want to abandon this blog altogether, so I’m participating in the Wednesday HodgePodge for today. Here goes.

1. Thursday (Oct 13) is National Train Your Brain Day. What do you do to keep your brain in tip top shape? Is it helping?
Does reading and writing in English, which is my second language, count? Other than that, not very much. I used to love a word game called 7 Little Words, but it’s not as accessible now as it used to be.

Is it helping? I’m afraid not. I feel like I’ve been slowly deteriorating over the past fifteen years.

2. You can sit with anyone in the world and “pick their brain”…whom do you choose? Tell us why?
Anton Došen, a former professor of psychiatry of intellectual disability here in the Netherlands and the first one (if I’m correct) to describe the discrepancy between cognitive and emotional development.

3. What’s something happening in the world (or your corner of it) right now that you have trouble “wrapping your brain around”?
Too many things to count… Politics, the economy, the war in Ukraine, my staff’s expectations of me… God’s love… etc.

4. On a scale of 1-10 where do you fall in the pumpkin fanclub? (1=blech, 10=make it all pumpkin all the time) Tell us something delicious you’ve tasted recently that had some pumpkin in it somewhere.
Hmmm, I don’t really care for pumpkin that much, unless it’s mixed in with other vegetables in some kind of stew or something. I’ve never had pumpkin spiced anything either.

5. Share a favorite song, book, or movie with an autumn title, setting, or vibe.
I have absolutely no idea.

6. Insert your own random thought here.
I am struggling. For one thing, fall is the hardest season for me. For another, settling into my new home is really difficult. Thankfully, I’m getting to know my staff a little and trying to let them know how I feel. This is hard, as I don’t want to be seen as too demanding. I am pretty sure some staff see me as such anyway.

Gratitude List (October 7, 2022) #Blogtober22

Hi everyone. It’s Friday, which usually means the Ten Things of Thankful linky is live. It isn’t yet as of the time of this writing, but if it will be live tomorrow, I’ll link this post up regardless. After all, I really want to do a gratitude post. It so happens that today’s prompt in #Blogtober22 is gratitude. Let me share.

1. I am grateful I was able to see most of my staff from my old care home and give them something from my shelf of handmade items before I moved here on Wednesday. I left the things that hadn’t been picked yet to be distributed among staff I didn’t get an opportunity to see.

2. I am grateful for delicious French fries on Sunday. Okay, it was my idea and I paid for them, but I am grateful the staff were willing to drive to my favorite snack corner in Raalte to get them.

3. I am grateful that the one client at my old care home who can talk a little, came by my room once it downed upon him that I was leaving. He gave me a candy bar and started to cry a little. I am grateful I was able to comfort him.

4. I am grateful for all the nice goodbye presents I got from the home and day center. I still don’t have pictures, but will show you once I do. Among other things, I got a giraffe soft toy and a framed collage containing photos of me.

5. I am grateful that, on Wednesday, the staff who were going to help me move were in the home early. After all, I woke up at around 7AM and am so glad I could get help then.

6. I am grateful my new staff don’t leave me alone for prolonged periods of time. In my old care home, it had been determined that I could be left alone for up to 45 minutes at a time, and this sometimes got prolonged to several hours if staff just popped their heads around the door when the 45-minute timeframe was up. I indicated pretty early on that, now that I don’t know my way around the home, I think 45 minutes is too long. Thankfully, the staff are able to accommodate me.

7. I am grateful for nice chatter with my fellow residents at the new home. I am also grateful for several clients from other homes who greeted me and started talking to me on my walks.

8. I am grateful my call button works after all. It didn’t work the first day in my new home, but yesterday, it got fixed.

9. I am grateful for home-cooked meals. Even for me, a rather picky eater, I think the staff are able to cook quite good meals, better at least than the meal delivery service ones. On Wednesday, I even at one point wanted to try some mash, which I normally can’t stand. I eventually decided against it though.

10. I am grateful a fellow client at my new home, who is into St. Nicholas, gave me a candy mouse this afternoon. This is a typical St. Nicholas treat. It was such a sweet gesture.

What are you grateful for?

Saying Goodbye to Mental Health Services

Hi everyone. October 10 is World Mental Health Day. In honor of this, many bloggers are writing about mental health this week. As a person with serious mental health challenges, I think I need to offer up my contribution too. However, mine will be a bit different, in that just last Tuesday I had my for now final appointment with a professional from a mental health service.

I did not usually share details of my less than stellar experiences with my psychiatric nurse practitioner on the blog, but let me say that my appointments, except for those concerning medication, over the past three years, have for the most part been useless. Maybe my expectations of an assertive community treatment team were too high. For those who don’t know, an assertive community treatment team is an outreach-based team that treats the most severely mentally ill, usually care-avoidant patients. As a result, a lot of the care they do is more like support and steering towards services than actual therapy. They do have a psychologist on the team, but the majority of clinicians are actually community psychiatric nurses.

Back when I got kicked out of the psych hospital in 2017, I did need such a team, as I needed lots of support in my daily life. However, once I’d moved into long-term care, maybe an assertive community treatment team wasn’t the most logical choice of treatment teams. And yet that’s where I ended up.

Not to say it’s all my or my referring agency’s fault. My nurse practitioner did flat out refuse to refer me anywhere else even when he should have realized he couldn’t provide the kind of treatment I needed. He also claimed we were doing “trauma treatment” by merely talking over my mental health struggles, which happen to be trauma-related, occasionally. In my opinion, it was neither specifically trauma-focused nor treatment.

Now I know that my staff and the behavior specialist at the care home are probably as capable as my mental health professionals were at helping me deal with my everyday instability. Neither can provide trauma-focused therapy, while both can provide a listening ear (my staff at my old care home at least often better than my nurse practitioner, in fact).

I did, of course, start my topiramate and pregabalin while in treatment with my now former mental health team. This I do credit the team’s psychiatrist hugely for. I don’t honestly think an intellectual disability physician would’ve been able to come up with this idea and I’m not sure a consulting psychiatrist would’ve gotten the idea either. Then again, now that I’m on a stable dose of both meds and only wanting to slowly decrease my aripiprazole, my agency’s intellectual disability physician can manage that.

All this combined got me to conclude that I don’t think I want mental health services anymore. If I or any of my current professionals ever change our minds, I can always get referred back to a mental health agency.

Moving Into the New Care Home

Hi all. I’m departing from the #31Days2022 prompts today, because the prompt for today, “other”, didn’t spark any creative muse in me yet. Instead, for today’s post, I am writing about my move into the new care home. It’s been quite the overloading day, to be honest.

I had set the alarm for 7:30AM, because the moving crew would be in Raalte at eight to collect my desk and chair. The rest of my belongings had been moved to the new home yesterday. Not surprisingly, I woke up before the alarm went off. Thankfully, there already was a staff available for me. When the moving crew had removed my furniture, I had breakfast at another table.

Thankfully, there still was time for a walk before it was time for me to collect the stuff that could go into the staff’s car and to drive off to the new home. This stuff included the soft toy I’d slept with, my clothes from the night before as well as the goodbye presents I’d gotten from the home and day center. One of the day center staff specifically came by to say goodbye to me on her day off.

As we got here to the new home, we were greeted by a man whom I’ve come to assume will be my assigned staff but of which I’m not sure. We were allowed to unpack, which took several hours. I had lunch after everyone else had already had theirs.

My staff from my old care home in Raalte left at around 2PM. From then on, several staff have come and gone into and out of my apartment. I did go for a walk around grounds at around 3:30PM. Several clients from other homes greeted me and my staff and started talking to us. I liked it, but it was a bit overwhelming at the same time.

At around 5PM, I got very irritable. The reason was the fact that my call button doesn’t work as of yet. It looks like it may’ve been set to be received at the night staff’s office in the main building, where during the day there’s no-one. I hope that’s true, as otherwise I won’t be able to reach anyone during the night.

I also found out there’s no handle to lock my room’s door from the inside without a key. I immediately drew the conclusion this means I can be locked into my room. Of course, the staff said they wouldn’t, but the mere fact that they can, causes me intense fear.

I am trying to stay as calm as possible as I write on my blog now that I’m alone. Thankfully, I can tell time – the staff verified this, which may seem stupid to those reading my blog but was actually validating to me. Now that they know I can tell time, they can tell me when they will be back. This does help me.

I Would Never (Or So I Thought): My Changing Perspective on My Care Needs #31Days2022

Hi everyone. Today’s optional prompt for #31Days2022 is “never”. I am immediately reminded of my shifting perspectives on my care needs over the 17+ years that I’ve been in the care system. Some things I thought I’d never accept, let alone want, in my care, are now things I wish for.

Most notably, in 2008, when I’d been in the psych hospital for about three months, I was being discussed among some autism know-it-alls. When asked what I wanted them to know before the meeting – since I wasn’t present at the meeting itself -, I wrote down that I wanted to be back in the community as much as possible as quickly as possible.

Out of the meeting came the recommendation that I be transferred to an autism treatment facility on psych institution grounds. I eventually ended up going to the orientation visit for the facility and the treatment coordinator and I mutually agreed it wouldn’t be the best place for me, precisely because of what it was: a treatment facility. I didn’t need further training in independence skills, after all, because, due to the combination of my disabilities, this wouldn’t be successful.

At first, I however misunderstood the meeting’s recommendations and thought they wanted me to go into the workhome, which is essentially a long-term living facility for autistics on the same institution grounds. And this is where I started to object in a way I wouldn’t now: I didn’t want to go live on institution grounds long-term.

For the first several years of my experience in the care system, I thought that institutionalization was an excuse for poor care. I am not saying it isn’t, because people who live in the community may need more support than those who live on sheltered institution grounds. In fact, when my current care facility was built in 2015, grouping several community-based care homes together, it was out of a need for budget cuts.

However, that wasn’t the reason I didn’t want to live on institution grounds. Indeed, the reason was the fact that I perceived myself as far more independent than I currently perceive myself. Not just that, but I had a misguided view of the amount of care I could receive.

You see, in 2007, I left an independence training home, where, during the week, the staff/client ratio was usually 2:7. Granted, there was no night shift, not even a sleeping one. I could deal with that at the time and, as a result, thought I could live in a community supported housing facility with staffing available even part of the day. Never mind that this usually meant a much lower staff/client ratio, so that within staffing hours, I would need to share my staff with a larger number of fellow residents.

I also rebelled against living on institution grounds because of my wish that more people could be integrated into society with the right support. Then again, I realized within the past several years that just because I and other people would wish for integration within society, doesn’t mean society wants us in it. For example, institution grounds are just much safer to walk on for people who aren’t safe in traffic, and that happens to include me. Just because I wish all drivers would stop their vehicles when they saw me, with or without my white cane, doesn’t mean they do. And it’s not like they can’t tell I’m disabled when I’m not using my white cane.

Also in 2008 or maybe it was 2009, I saw this documentary about a care agency in the southwest of the Netherlands which had completely done away with institution grounds in 1997, even for the most severely disabled clients. The presenter started out by saying that half (I think) of the clients in another province wanted to go back into institutions. The southwestern agency’s director started talking highly of his agency’s approach, where for instance they call their support workers “personal assistants” and where he at first claimed all clients are successfully integrated within the community. The presenter started showing examples of clients who were drowning, figuratively speaking, in the community. The bottom line of the documentary was that the director made up his mind and invited the presenter to come back a year later to hear his revised approach. I am pretty sure I wouldn’t believe the presenter, saying the clients had obviously not received the right amount of support. But if you need a “personal assistant” by your side all the time in the community while you can roam institution grounds freely by yourself, living in the community isn’t necessarily the obvious choice.

Coffee, Beer, Night Staff, Etc.: Questions I Asked My New Care Home #31Days2022

Hi everyone. Today’s optional prompt for #31Days2022 is “coffee”. I was immediately reminded of one of the E-mails I sent to my assigned staff in preparation for my orientation visit at the care home I’ll be moving to on Wednesday.

One of the less important questions I asked was whether they have set coffee times and, if so, whether they brew regular coffee or “decaf shit”. I did point out, with a winking emoji, that it wasn’t like I didn’t want to live there if they served decaf all day, but that this’d mean I’d need to ask my husband to give me my Senseo back (if he even still has it) As it turns out, they serve regular coffee at least in the afternoon.

I asked some other questions too. Most of the first ones I E-mailed, were worded rather formally. Some of the other less important questions were about groceries. I asked whether the home contracts with a local supermarket or with a nationwide healthcare-specific superstore (the latter), whether they did chips and soda or (alcohol-free) beer on weekends and, if so, whether clients had to pay for those treats themselves. It turns out they offer these treats on Saturdays and clients don’t need to pay for that, but each client does have an account with the superstore in order to get extras, which they do need to pay for.

I also asked what my mailing address would be, since the home has a fake within-institution mailing address. Mail should be sent to the institution’s main address, with the fake address as an additional address line (I’m not yet sure how mail delivery people aren’t going to get confused).

More important questions had to do with the availability of staff. As it turned out, the early shift starts at 7AM and the late shift ends at 10PM, except on Saturdays and Sundays and every other Friday, when it’s 7:30AM and 10:30PM. That had me a little concerned at first, because I was worried I might not be able to get the right support at night.

Another important question was about the night shift. I knew that the institution night staff operate from a central office in the main building, but I wondered whether one night staff would be allocated to my home (and a few others) or whoever received my call, would come or send someone. It turned out whoever was in charge of receiving calls at that point, would send someone who was close by.

Thankfully, at my second orientation visit, I found out the door to the home is locked at night, so I cannot leave the home then. This is good in light of the 30 minutes or so between the late shift leaving and the night shift being able to fully step in. I am not in a medically fragile state, so it’s not likely I would die of a seizure or something within those 30 minutes. However, if I could leave the home on my own, it would’ve been quite possible that I’d wander around grounds all night. I am happy I will be as safe as possible in my new home.

I Give In: Following My Heart to My New Care Home #31Days2022

Hi everyone. The optional prompt for day 2 in the 31-day writing challenge is “give”. Again, this is a bit of a freewrite as I prepare for the move to my new care home on Wednesday.

You see, when I originally moved to my current care home in 2019, it was the first place that wanted me. I also had some rather odd preconceived ideas about the kind of place I needed to be in to get my needs met. I thought that, in order to get a high staff/client ratio, you needed to be in a home for severely or profoundly intellectually disabled people. After all, places I’d known before in the psychiatric system, had a much lower staff/client ratio and so did so-called “supported housing” facilities for those with milder intellectual disabilities. (I did already know that I wanted to be in a place for people with intellectual disability rather than mental illness even though I’m not intellectually disabled, because the intellectual disability services approach is far less training-focused than that on the mentally ill.) At the back of my mind, I did know about a few homes on the care agency’s main institution grounds that catered towards those with mild or moderate intellectual disability with severe challenging behavior, but I couldn’t get the right “care profile” (on which your funding is based) for that. Not at the time, at least.

So I accepted the room at my current care home. It didn’t feel that good right from the start, but what else could I do? I was hardly getting by living with my husband. And, indeed, I don’t know what I’d have done had I had to survive lockdown while living independently. Unsuitable as this home may’ve been, it was a much-needed step on my journey.

Once I lived in my current care home, where all my fellow residents have profound intellectual disability, it became apparent pretty quickly that I needed more intensive behavior-related support than my care profile would allow for. I was first very scared when I heard that my support coordinator was applying for the highest care profile – the one I would’ve needed for the homes still at the back of my mind. After all, at first, my funding had been denied altogether. Not just the highest care profile – any long-term care funding. Were they going to re-assess me all over again? It turned out not: either I’d get the higher care profile or I’d remain in the lower category, but my funding couldn’t be taken away. Within a month, we heard the good news that my funding got upped to the highest care profile. Five months later, my additional one-on-one support got approved.

Still, I didn’t dare give in to my wish to move to one of the “intensive support” homes on main institution grounds. Not consciously, at least. When no-one was looking, I did look all over the care agency’s website to see the descriptions of their homes, all while saying I didn’t want to move.

In fact, at my care plan review last year, I said I was 95% sure I wanted to stay here and those other 5% were because of the distance to my husband. My husband said I needn’t worry, as it’s not like there are dozens of places for me to choose from. Then again, I don’t need dozens to choose from.

The home I’m moving to on Wednesday, is again the first home that wants me. However, it is also the home that stood out to me on those searches on the care agency website. It is most certainly not perfect – I know that before I’ve even moved in. However, I have my hopes up that I won’t regret having given in to following my heart.

Finding My Way #31Days2022

Hi everyone. The first optional prompt for #31Days2022 is “way”. I thought of several titles for this blog post, but ultimately decided on this one. The rest just randomly flowed out of my fingers.

Only four days before I move to the new care home. I told my mother about it on Tuesday. Somewhat surprisingly, she didn’t react weird to the fact that I’m going to live on institution grounds. Not surprisingly, she did start talking to me about how I might be able to walk around grounds independently then.

I did, indeed, mention to the support coordinator and behavior specialist for the new home, when they came to assess my suitability for the home, that I may want to learn to take a little walk myself on institution grounds someday. Afterwards, my current assigned staff cautioned them against too high expectations. After all, I want to be “normal” pretty badly, but I still remain multiply-disabled in some significant ways.

I know that people who are “just” blind can learn to find their way around institution grounds quite easily. But I’m not “just” blind. For one thing, I am not even sure I could use my white cane in a manner that would allow me to detect obstacles safely, given my mild mobility impairment due to cerebral palsy. For another, due to autism-related executive dysfunction and other factors, my energy level varies greatly from one day to the next. So does my capacity to handle sensory stimuli. Consequently, I may be able to find my way for a short walk around grounds pretty easily one day and get hopelessly lost and frustrated the next.

I remember back when I was in the psych hospital, I voiced a similar wish to learn to take a quick walk around the building. An orientation and mobility instructor from the blindness agency came by, taught me a few times with very limited success. Before she was even finished teaching me, the staff decided it was my responsibility, so no matter my mental state, if I left the ward (even in a meltdown), no staff would come after me. I was then supposed to take my little walk, despite the fact that, in a meltdown, I wouldn’t remember where to go at all.

I know at least here in the Netherlands staff can’t legally restrain you once you’ve left an open ward, but that wasn’t the point, since I didn’t need restraining. Their point was that I was now somehow capable enough to find my way by myself and, if I wasn’t, it wasn’t their problem. This at one point led to my husband needing to drive over from the next town to take me back to the ward.

In a sense, I should know the new care home isn’t like the psych hospital, but I keep getting flashbacks. All I can hope for is that my current staff will do a proper handover.

Meh #SoCS

Hi all. Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “me”. We’re supposed to either use the word as it is or find a word that starts with “me”. The first word that came to mind somehow was “meh”. And how fitting! I am sick to my stomach again. I will spare you the details but it’s not pleasant. And I’m supposed to write lots of things, as it’s the start of #31Days2022 and Blogtober and all. Oh well.

Last Tuesday when I was sick too, it lasted only a couple of hours, so I am hoping it will go away by the evening. That way, I could write a proper post once my one-on-one leaves at 8PM. That’s of course not the main reason I want my sickly feeling to go away. I mean, if I remain sick until Wednesday, will I be able to move that day?

Of course, I’m hoping I won’t give my sickness to anyone else either. I’m not running a temperature, thankfully. My husband thinks it’s food poisoning. My staff think it’s stress. I hope in any case it will leave my body soon (and not in the way it’s leaving my body now, honestly). Oh wait, that’s a bit TMI. Oh, see, writing it down either helps or it’s indeed getting better. Let’s hope.