Ideal Isn’t Real

Posted on by Astrid

Today is the day the word I picked for #JusJoJan was assigned to, so I’m pretty much obliged to write a post. My original choice for a word was “Home”, but I made up my mind as I wrote my comment on Linda’s post and chose “Ideal”. My plan was to then write about my ideal care situation.

I am not sure I can do it though. An ideal situation, after all, doesn’t exist and chasing it may mean I lose sight of the things I could appreciate in what I already have. That’s possibly what happened with the move to my current care home, much as I struggle to admit it.

Of course, I knew there were going to be drawbacks to this care home, but I minimized them in my mind. When, back in like late 2021, I read up the information on this care home on my agency’s website, it sounded ideal. In fact, I remember at one point telling my staff and some people on an E-mail support group I belong to that it was my dream care home. But that’s judging from a promotional webpage, not reality.

Then when I actually got the opportunity to go here, what I found out on my visits here indeed revealed some more negatives. However, for the most part, these were vague “gut feeling” negatives, not facts. A factual negative was the fact that staff here don’t tell us clients who will be on shift the next day, reasoning that they might fall ill. “But we all come back,” the support coordinator reassured me, “and if we don’t, we’ll tell you.” Well, the one time a staff left so far, I didn’t find out in advance.

Maybe, looking back, there were clearer signs than just my gut feeling that the dream care home was going to turn into a nightmare. I am not sure. Maybe I didn’t ask the right questions. Maybe the staff – purposefully or not – avoided answering the real questions, focusing instead on details. Either way, I can’t help it now. What I can do is never believe something is going to be ideal again. Ideal isn’t real, after all.

The Best Decision of My Life

Posted on by Astrid

I really want to write, but, as usual when I’m like this, so much is spinning through my mind that I cannot ultimately get anything out of my fingertips. To get myself started, I decided to look at the book Journaling with Lisa Shea and picked one of the journaling prompts on gratitude. It asks us what the best decision of our life was. Was it an easy decision or a hard one? I’m pretty sure I already covered this topic several years ago, but the answer may be different now.

After all, up till quite recently, I would have said the best decision I ever made was to consent to being admitted to the psychiatric hospital in 2007. That, after all, set in motion the wwheels that ultimately got me into the care system. However, looking back, I could just as easily have selected my choice to go to the blindness rehabilitation center in 2005 rather than to university. After all, that was what led me to the training home and to my autism diagnosis.

I honestly don’t want to give the psychiatric hospital people, particularly my last treatment team, the credit they get if I say that getting admitted was my best decision ever. After all, like I have said before, I didn’t make much progress in those 9 1/2 years in the hospital. Worse yet, the only difference between my care arrangement before the hospital and after it, was that my husband was now in my life. My husband deserves the kudos for that, not any mental health professional.

Instead, the best decision I ever made, I made rather offhandly on September 20, 2018. This was the decision to allow my support coordinator to schedule an appointment with her regional care consultant on getting me into long-term care. The appointment itself took place on October 4.

I say I made the decision rather offhandly, in that we were discussingn living options and I eventually said, sort of half-heartedly: “Okay, you can ask your care consultant to come.” In truth, the decision was a really hard one.

Even though I had planned on going into supported housing ever since my initial psych hospital admission in 2007, it felt kind of like I was betraying my husband, my parents, my former treatment team and everyone else by admitting this is what I needed. For this reason, my husband’s first words when I said my support coordinator had scheduled the appt with her care consultant, were very comforting: “You know I support you, right?”

Waiting for Sunrise #Write28Days

Posted on by Astrid

Welcome to day five in #Write28Days. Today’s prompt is “Sunrise”. It is also this week’s prompt for Five Minute Friday. I’ll try to freewrite for this post, although I won’t set a timer.

At first, the prompt didn’t speak to me. I have rarely in my life ever seen the sunrise, as I don’t usually get up before dawn. Besides, I am almost completely blind, so I am not able to appreciate its visual effects as much as others. To me, sunrise looks pretty much exactly like sunset. I know there’s a difference, but I can’t see it.

Then I saw that some fellow Five Minute Friday writers have used the sunrise prompt as a way to symbolize the coming of something good. According to Genesis, God created the sun to mark the day and the moon to mark the night. Indeed, a new morning is often appreciated as something positive. It symbolizes a new chance to make positive changes to our life or world.

Why, though, should we wait for that new dawn? We shouldn’t wait for Jesus to come back to make everything right. With God’s help, we can make positive changes to our life and world right now, even though it’s 8:30PM on a Friday in February and the sun has long set.

There are so many things I want to change about my life and world. Personally, I want to develop my distress tolerance. I want to lose weight. I want to deepen my faith. Politically, I want to educate myself on areas in which I experience privilege, such as race.

I don’t need to and shouldn’t be procrastinating on these things. I may not be able to accomplish them all at once. However, with God’s help, each and every second of every single day, I get to make a choice between love and judgment, ignorance and education, health and sickness, faith and despair. Right now, I am making a choice to trust God. Thanks to His grace, I trust I can make these other positive choices.

Truthful Tuesday: This or That

Posted on by Astrid

Good evening all. I am finding that I struggle to keep the motivation and inspiration for so-called quality content. That doesn’t matter, as it’s my blog and I don’t write for my stats. That can’t keep me from being slightly frustrated by it though.

Today I’m participating once again in Truthful Tuesday. The questions this time are a series of rather lighthearted this-or-that choices. I like that! After all, we just heard here in the Netherlands that we’re in lockdown at least until February 9 and curfews or other harsher measures are being discussed. Still, I am so lucky to live here.

Anyway, here goes. I’ll explain some where I can.

1. Coffee or Hot Tea?
Coffee! I do like hot tea on occasion, but only green tea without lemon or other yucky additives.

2. Soda or Iced Tea?
I’m assuming that soda is always carbonated, so then I’d say iced tea. I prefer non-carbonated soft drinks though.

3. House or Condo?
House just because that’s what my husband and I have at the moment. I don’t mind living in a condo though.

4. Pie or Cobbler?
Pie! I had honestly never heard of cobbler and the first translation Google came up with had nothing to do with food. However, the second one made it pretty clear to me I prefer pie. In fact, I can’t stand cobbler.

5. Cornbread or Biscuits (The US kind)?
Cornbread. I have no idea what U.S. biscuits taste like, but I do like cornbread.

6. Computer or Smart Phone?
I honestly can’t do without either. Does that sound weird? I mean, of course I can do without them, but if I want to accomplish everything I do on a daily basis, I certainly need both.

7. Hotel or Camping?
Hotel for sure. As a child, I often went camping with my family, but it got harder the more sight I lost. Now I don’t really think I can do it.

8. Swimming Pool or Ocean?
Swimming pool. I can swim in a lake or the ocean, but I don’t like it nearly as much as I like swimming in a pool.

9. TV Shows or Movies?
TV shows. I don’t have the attention span to follow a movie.

10. iOS (iPhone/iPad) or Android (Samsung, LG, et. al.)
Definitely iOS. It’s far more accessible for blind people than Android, although Android developers are making progress too. I started using a smartphone before Android could be used by not so tech savvy blind people. Though I might be able to make the transition to Android now, I just won’t.

If I Could Turn Back Time… #Blogtober20

Posted on by Astrid

Today’s prompt for #Blogtober20 is “If I Could Turn Back Time”. I think we all would do some things in our past differently if we could. I certainly would.

I mean, when I was in the psych hospital from 2007-2017, I regretted almost every step I took or didn’t take. My last psychologist was right in a way that so many places to live had passed that I’d turned down. I had turned down a shelted living place for the mentally ill, a workhome for autistics, a training home for autistics, etc. They were not suitable places for me and I completely understand I decided not to take the step. However, I particularly completely regret the step I did take to move to that last psych ward in 2013. Most of the places I’d turned down, seemed more suitable in hindsight than that last unit.

Still, now that I’m in a suitable place, I can see why the things happened the way they did and I made the choices I made. None of the places offered to me back in those early years in the psych hospital were as suitable as my current care facility is.

For the most part, this boils down to them being psychiatric living and/or treatment facilities rather than those serving people with developmental disability. You see, here in the Netherlands, autism is seen as a psychiatric condition if you have an IQ above 85. And in case it isn’t clear, the care approaches of psychiatry and developmental disability differ significantly. In particular, all psychiatric facilities are aimed at people developing their independence, or as they call it “rehabilitation”. I find this particularly unsuitable an approach to me.

Looking back, I maybe should have accepted the very first placement offered to me: a treatment unit and independence training home for autistics. Maybe the staff would’ve recognized my needs there. Or maybe not. Maybe I should’ve gone to the workhome. At the workhome for autistics, the staff did understand I needed more support than they could offer. They tried to help me and my staff find another place for me but came up with a facility for people with intellectual disability. The staff at the psych unit at the time were very understanding of my needs, but they still felt an intellectual disability place wouldn’t be suitable. You all know that I beg to differ.

To make a long story short, I’ve had quite a few regrets, but in the end, my life is good the way it is now. And that’s what counts!

#Blogtober20

Freewrite on My Transition Into Long-Term Care

Posted on by Astrid

Yikes, in less then a week, I’ll be in the care facility in Raalte. It’s exciting, but of course it is also scary. I have been planning on writing more about the transition. In fact, I have Mari L. McCarthy’s 22-day transitions journaling course. I had it already before I moved in with my husband, but never quite used it then. I’m not sure I’ll use every prompt this time either. The day 1 prompt is to freewrite on your hopes and fears and such re the transition. Here goes.

I’m really excited to go into long-term care. I’ve been looking forward to it for almost a year. However, now that it comes close, I’m second guessing myself.

I mean, am I not happy with the situation as it is now? The honest answer is “No”, but does that relate to the situation or to me? As a fellow patient on the locked ward once said, you take you everywhere. As such, I need to be really clear that I’m not just depressed because I suffer with a mental illness. I need to separate what is my depression that just is from what is my unhappiness with living semi-independently.

Besides, am I truly unhappy? My husband said this time in my life was perhaps the happiest for me, judging by his observation, since he first met me in 2007. Then I must counter it’s perhaps the least unhappy time period in my life.

I really hope I’ll be able to have a happier life living in long-term care. I know I often feel very depressed when alone and that’s not a time my husband sees me. The times I have no-one to rely on, will most likely lessen a lot, but having my own room means I’ll still be able to have alone time.

I fear, however, that I’ll be understimulated in long-term care. One of the things the behavior specialist from the blindness agency wrote in her report on me from observing me at day activities, is that the activities are not challenging. I do simple puzzles, construction play and such. If that’s all I’ll be required to do at my new day activities, I’m sure I’ll get bored. Part of me says that we’ll find a way to deal with this and that I need to be content to get the care I need. Another part says that I shouldn’t stop desiring stimulating activities just because I am in long-term care.

I also fear that going into long-term care will be a slippery slope. My father’s voice is in my mind, saying I manipulate the world into giving me care. If he is right, going into long-term care will just make me lose skills, become more dependent and ultimately need a lot of one-on-one support. It may lead to backlash from the care facility, causing me to get kicked out again.

I will, of course, also be missing my husband. I can deal with it, but it’s sad. I’m scared that he’ll grow tired of visiting me every week because of the long drive (nearly 90 minutes one way). I don’t want to lose my husband. I said, when originally falling apart in 2018, that I would choose him over long-term care if I had to. I don’t really need to choose, as we’ll still be seeing each other, but what if I do? Will it be too late to choose him? I hope not.

Confessions of a New Mummy