My Ideal Home

Posted on by Astrid

I’ve been thinking since yesterday about the prompt I mentioned I found in Day One: What would your ideal home look like? And since I have nothing else I want to write about right now, I thought I’d paint a word picture of my ideal home. Of course, this post is going to describe the physical look of the house. Like I said yesterday, home is where I can be myself and that cannot mostly be achieved with material things.

I’m going to design my ideal home as I want my living space to be. I’m assuming in this case that, if it will be a home where I live with my husband, he’ll get his own space. I am also not going to bother with practicalities such as having to clean a large space, since, well, this is just a dream.

First, my house would have a bottom floor and a top floor. It might have an attic too for storing random bits and stuff, but I haven’t decided on that one yet. In my husband’s and my real homes, both back in the tiny village and in Lobith, I could not/cannot reach the attic, after all.

The bottom floor would have a living room with two very comfy, large couches. In addition, there’d be a recliner. There’d be a living room table just about big enough for drinking tea. There’d of course be a TV.

The living room would be attached to the dining room, where there’d be a dining table. We’d have an open kitchen, so it’d be in the dining room really. That way, if my husband is cooking and I’m in the living room or diner, we can still talk.

The kitchen would of course have an oven, a microwave, a dishwasher and a stove. If I get my way (and yes, I do, as this is my blog!), it’ll be an induction stove.

Then on to the top floor. That floor would have three separate bedrooms for me: one bedroom which I’d share with my husband, one sensory room and a craft room. Oh, I’d also need an office, but that’s as simple as a desk and a chair so could be crammed in with one of the other rooms.

The sensory room would of course have a water bed with its own internal music system. It would also have an essential oil diffuser. Other than that, there’d be lots of soft toys, and my yoga mat and fitness ball.

The craft room would have enough room for a table to work on and a chair, as well as lots of storage shelves. It would have its own microwave, fridge and sink to clean my hands.

Lastly, there’d be a bathroom. That one would have a bathtub that could be filled enough with warm water to cover my entire body (my care facility’s bathtub can’t). There’d also be a separate shower for when I don’t feel like having a bath. There’d obviously be a washbasin to brush my teeth at. I don’t think I’d want a second toilet here. Now of course I forgot to put a first one at the bottom floor, but oh well, I’m not an actual architect, am I?

That’s it I think. What would you want to include in your ideal home?

Home Is Where…

Posted on by Astrid

Some say home is where my bed is. Then again, do they mean the care facility’s bed or my husband’s bed?

Others say home is where my toothbrush is. Then again, I take it with me wherever I go.

Dallas Moore would say home is where the highway is. My husband might’ve agreed when he was still a truck driver. Then again, neither his home in Lobith nor my care facility in Raalte is on a major highway.

I say home is where…
I can feel safe. I can feel comfortable. I can be myself.
That place, I’m not yet sure I’ve found.

This post was written for My Vivid Blog’s writing challenge: “Where”. I am also joining Writers’ Pantry #81. This post was inspired by today’s daily prompt in Day One, my diary app, which asks me to describe my ideal home. It was also inspired by this song.

#WeekendCoffeeShare (May 8, 2021)

Posted on by Astrid

Hi and welcome to my #WeekendCoffeeShare post for this week. Grab a cup of coffee, be it Senseo or traditionally-made, a glass of your favorite soft drink or a glass of water and let’s catch up.

If we were having coffee, I’d share that the weather here is still all over the place and mostly not in a good way. It’s mostly rather chilly for the time of year and has been raining everyday for the past week. Tomorrow, the temperature’s supposed to rise to a whopping 25°C, but we’re still supposed to get rain and of course thunderstorms. Not fun!

If we were having coffee, I would tell you that, despite the weather, I still managed to get in an average of about 8000 steps each day. I’m still experiencing foot pain when wearing my AFO for longer than say fifteen minutes at a time, but it’s okay if I don’t go for long walks.

If we were having coffee, I would share that I am so happy that my Braille display got fixed. Like I said yesterday, it was quite the ordeal.

If we were having coffee, I’d also share that the construction crew finally came by my and my husband’s house in Lobith to get us a new front door and backdoor. They still need to fix one window, which has a crack in it. Thankfully, they weren’t as stubborn as the Braille display company, so my husband won’t have to pay for the broken window.

If we were having coffee, I’d tell you about the talk I had with my facility’s behavior specialist on Thursday. I was able to express my continuing feelings of not belonging in my current care home. This, for clarity’s sake, has nothing to do with the care home itself or the way the staff treat me, which is great. I am pretty sure it’s my search for some ideal that really doesn’t exist. After all, wherever I go, I always take my insecure self with me.

If we were having coffee, I’d tell you about the online cerebral palsy (CP) meeting I had this morning. It was a regional meeting, because in the future CP Netherlands hopes to organize them in real life. It was quite an interesting meeting. Having recently become more and more aware of my CP, I was able to feel validated by people’s experiences of the long-term effects of this disability.

I also signed up for an online workshop on aging with CP that’s being held next month. I am still considering whether to sign up for the workshop on development of people with CP from birth to age 35, as it sounds interesting despite the fact that I’m nearly 35 myself.

If we were having coffee, lastly I’d share that my husband and I are planning on having lunch tomorrow. As usual, we’re going to get a takeout lunch at Subway.

How have you been?

Places I and My Family Have Lived

Posted on by Astrid

Today, I once again looked to a book of journaling prompts for inspiration for a blog post. One of the prompts in the first chapter of Journal Writing Prompts for Child Abuse Survivors is to list all the places you’ve lived. There may not be any need to elaborate on them, but I am going to share my thoughts and feelings that come up. For this post, I’m just going to talk about the houses I lived in with my parents. Otherwise, this post is going to be way too long.

First up is my parental house in Rotterdam. My parents bought the house a year before I was born. To be quite honest, I have very few memories of this house, even though I lived there until I was nine. I do remember my and my sister’s bedroom, which had a bunk bed in it. My sister slept at the top and I slept at the bottom.

I don’t remember most other rooms in the house. I know my parents must have had a bedroom, but I can’t remember its location relative to the kids’ bedroom.

I do remember the garden. It was small, but still big enough to play in. It had swings and a sandpit. I loved to play here with my childhood friend Kim.

I also remember the neighborhood. I played in the “thick street”, a square bit of pavement between two blocks of houses. I also often went to the playground across the road from there. When I had lost some of my vision at around age eight, I felt too scared to cross the road.

Like I said, I lived here until I was nine. Then, my family and I moved to Apeldoorn. We moved to a quiet neighborhood. The house we moved into, had a large kitchen-diner and a living room downstairs. We called the living room the “library” because it housed my mother’s huge book collection. Upstairs where three bedrooms, two large and one very small. One was my parents’ bedroom. The small room was my mother’s office, while the other large bedroom was my father’s.

My sister and I each had a bedroom in the attic. I remember not wanting to have my own bedroom at first, probably because I was used to my sister’s company when going to sleep. I eventually grew to like it though. I had the same bed for all of the years I lived here, one of the original bunk beds. My sister claims I got hers and she got mine after the move.

The other two smaller rooms in the attic were a laundry room and a guest bedroom.

We had a large garden. The first summer we lived here, my paternal grandma gifted us a wooden play set that had swings and climbing equipment. I could be found on the swings many hours each dry day until I was at least fourteen.

During the first few years that I lived in this house, I loved exploring the neighborhood. It had at least four playgrounds within a five-minute walking distance from my home. I would often roam about trying to find new playgrounds farther and farther off. When I lost more of my vision at around age twelve, that mostly stopped. Besides, of course I was too old for playgrounds then. I still went to the nearby shopping center regularly, often getting lost on my way.

I generally really liked the house in Apeldoorn. When my parents were trying to sell it and my husband and I were looking for a home, my parents initially offered it for rent to us. We however had the provision that it’d go off the market for a while. Of course, this wasn’t really reasonable. My parents sold the house in December of 2013. I am glad in a way now that they did, as now I have no need to be reminded of the house and my childhood when I don’t want to be.

Home Sweet Home

Posted on by Astrid

This week, Eugi’s weekly prompt is “Home sweet home”. I’ve never participated in this prompt before, but I thought I’d now.

Two weeks from now, I’ll be living in the care facility one year. It feels closer to home than any of the homes and facilities I’ve lived in before did. That feels weird. My parents’ house felt like home, but that’s just because I knew nothing else. My parents felt as safe as possible, but again that was because I knew nothing else.

Then I went into the training home. That was temporary, as you were supposed to live there for at most two years while training for independent living. That’s what I did eighteen months later. I cried my eyes out the first day, in front of my mother, who got angry with me.

It felt horrible to know that this was it forever. I mean, for at least the duration of my university studies, so four years, I’d live there. Then I’d live in a rented house on my own. It completely overwhelmed me.

As regular readers know, it didn’t last. Three months in, I landed in a mental crisis and was hospitalized. Though I stayed in the psych hospital for 9 1/2 years total and for over four years on one ward, it never felt like home. I knew it was temporary, after all.

And then I got kicked out. I lived with my husband in our rented house in the tiny village for 2 1/2 years. Even though I got by okay, it never felt good.

And now I’m here. I got that overwhelming feeling that this is it forever in the first weeks too, but this time, it was good.

I struggle to believe that this is not yet another temporary living arrangement or one in which I cannot cope. I act in and out a lot, probably to somehow “prove” that I’m not suited to this home. That I’m not suited to any home in the world. That there is no home sweet home for me.

Yet my staff so far say that I can stay here for the rest of my life. That, too, feels kind of overwhelming, but like I said, in a good way.

I also of course have my and my husband’s home in Lobith. That one still feels a bit odd to me. I never really lived in it, since we bought it two days after I moved into the care facility. In fact, I struggle to consider it my house too. When I write about it, I often write that it’s my husband’s house, then correct myself and add “and my”. I want to keep a connection to that house too, but it doesn’t feel like home.

Roles I Want to Play in the Future

Posted on by Astrid

A few weeks ago, I wrote a post about the roles I play. This post was inspired by the first prompt in the journaling workbook The Year of You. The second prompt is to write about the roles you would like to play in the future. Here goes.

1. I want to be a student. I don’t mean that I want to go back to college full-time. That place has been passed and I’ll never revisit it. However, I would definitely like to study at the Open University or some other distance-learning college again. I considered signing up for the developmental psychology course at the OU for this fall. I’m not sure I’m ready though.

2. I want to be a writer. Of course, I am a blogger already and I have one piece of mine published in an anthology. However, I really want to publish more. I’m not so sure I’ll ever write my memoir as I was some years ago, but some short pieces should be doable.

3. I want to be a volunteer. I really hope to do some type of community service, ideally putting my knowledge of disability and mental health to use. For example, maybe I’ll do a recovery course again and maybe in the future even lead one.

4. I want to be an advocate. I am already with this blog, but I really want to be more of a voice for the disability community in the Netherlands.

5. I want to be a crafter. That is, I want to be able to find a hobby that I enjoy. I no longer have it as a goal that I’ll be able to do it independently.

6. I want to be a guide dog owner. I really hope to be able to get a guide dog sometime in the future. I’m not sure that is a realistic goal, but I can dream, right? I mean, ideally, I’d have a psychiatric service dog/guide dog combo. That would be awesome!

That’s it so far. Last year, I might’ve added wanting to be a homeowner, but that goal can be crossed off.

What roles would you like to play in the future?

A Year Ago

Posted on by Astrid

One of Mama Kat’s writing prompts for this week is to look back at a year ago. Where were you then? What has changed and what hasn’t? Let me share.

A year ago yesterday, I had my intake interview and tour of the care facility in Raalte. We visited the sensory day activities group and snoezelen® room, as well as the home selected for me. At the home at the time was a respite placement for a man I knew from the day center I went to at the time. He greeted me excitedly: “Astrid!” He then went on to babble “respite fun”, “Mommy and Daddy vacation”, etc. I was shown around two rooms, one this man’s room at the time and one another client’s room. I think that client got moved to another room when I came and I now have his room.

Even though I had been invited on a tour of the facility, I didn’t know for at least another month that I had actually been accepted. The reason was that the staff all had to agree they could provide me adequate support and care, given that my needs are in some ways very different from the other clients’. They, after all, all have severe to profound intellectual disability.

Now, a year on, I’m settled nicely into the care facility. I didn’t get to attend day activities at the group they’d shown me. Now though, and for at least another two months, we get day activities at the home.

I think also around a year ago today, my husband had first seen the house in Lobith we ended up buying. I ended up moving to the care facility in the same week we got the keys to our new house. As such, a year ago today, I still lived in the tiny village rental house with my husband.

As I look back, I keep praising God that this whole COVID-19 thing didn’t happen last year. Even though the day center I attended at the time is slowly opening its doors again, community support is still mostly phone-based. I am forever grateful I got my long-term care funding approved last year.

In other news, the weather is drastically different now from last year. Last year, all weather records were broken with temperatures rising to 40°C. Now we’re lucky to reach 20°C and have a few hours of no rain each day.

How is your life different now from last year?

Mama’s Losin’ It

Decisions

Posted on by Astrid

This week, V.J.’s weekly challenge is all about decisions. V.J. is facing a decision regarding an opportunity to buy a house.

My husband and I faced a similar decision last summer. I had been approved for long-term care funding on June 4. This would mean higher costs for my care, as the copay for long-term care is several hundreds of euros a month, while the copay for community care is at most €19. This made our search for a house to buy more urgent. After all, mortgages are usually cheaper than is rent on a similarly-priced house. We had inquired about buying the house we were renting at the time, but the housing corporation had refused.

My husband did most of the visits to possible houses by himself, including the one to the house we ended up buying. This house was about the only house within our budget that wasn’t falling apart or being rented out for an undefined time. The latter of which is illegal, but that didn’t help us.

So my husband ended up choosing our house in Lobith. I was hardly involved with the paperwork, except where I had to be because we’re married. I was pretty sure I wasn’t going to live in this house for long anyway.

Similarly, my husband left all decision-making regarding the care facility I was going into up to me. Of course, this is in a way different, in that I’m a legal owner of our house and he’s not legally anything regarding the care facility.

I ended up moving to the care facility in Raalte just two days before we were to sign the contract on our house.

It’s indeed somewhat interesting that my husband and I leave each other so much room for decision-making regarding our own lives. Other married couples probably do much more shared decision-making. I don’t know whether it’s a good thing or not the way we do it. People have encouraged me to get more involved with the financial and legal aspects of the house. I’ve also been told my husband could (should?) be more involved with my care. But as long as we’re both competent adults, it works okay.

I’ve been thinking of making my mother-in-law my official decision-maker should that ever change in my case. I know my nearest relative would be my husband, but I want in any case to prevent my parents or sister from becoming my guardians. After all, I’m not too sure they truly would have my best interest in mind, though obviously they’d think they do.

2019: The Year in Review

Posted on by Astrid

Wow, can you believe 2019 is almost over yet? It was truly an eventful year. I want to do a review of the year. I originally intended on waiting till the 31st to do it, but I’m not sure I’ll have time for it then, as I’m celebrating New Year’s at my in-laws.

I had a theory when I was a teen that said life ran in cycles, by which every three years I’d find myself struggling significantly, then the next year would be one of hope, and the third year would be one of disillusionment, by the end of which I’d spiral into despair again. 2001, 2004 and 2007 were all years of despair, whereas 2002, 2005 and 2008 where years of hope. I didn’t continue to be superstitious about this past that point and honestly looking back each year was really a mixed bag. By this logic though, 2019 would have to be a year of despair. It was to begin with, but it ended on a really positive note, whereas by my teenage logic, the fall of the year of despair would be the hardest.

Well, let me say this year was extremely eventful indeed. At the end of 2018, we had just mailed out the application for long-term care funding. I started the year really hopeful by looking at a living facility and having my long-term care assessment in January. Then in February, I grew cynical. I decided everything wouldn’t be okay till 2021, as that would be the year people with lifelong psychiatric conditions would be allowed access to long-term care. I was right. My funding application got denied.

March, April and May were all largely months of waiting, as we sent out the appeal letter and my appeal was looked at. In late May, my support coordinator told me I would most likely not be granted long-term care funding this time either, but the lawyer in charge of my appeal was going to see if she could find a way to approve me anyway. She did somehow. I feel the long-term care regulations put people with multiple disabilities at a significant disadvantage. I remember writing blog posts explaining the legalities of long-term care back in like 2009 on my very first WordPress blog and I already felt the rigid care packages based on primary disability, were stupid. I don’t know how they managed to grant my appeal and even if I knew, I wouldn’t share it here.

By the time my long-term care funding was approved, my support coordinator had been informed that the care facility in Raalte with her agency had several available rooms. I started the intake process. By late August, just as I was losing hope again, I was told I would be accepted. I moved on September 23.

The past three months have been good. I feel a sense of calm, even though I still experience meltdowns. I had one tonight. Like a fellow patient on the locked unit said once, I can move around all I want, but I still need to look to myself for improving my own mental health.

When I looked at my review of 2018, I saw that my husband had been warming me up to us buying a house in his work city. I thought then that this may not happen if I go into long-term care, and indeed the house we bought isn’t in his work city. However, it’s still a house he likes. It is legally my house too, of course, which is good, in that I can move there if I ever get kicked out of long-term care. I also try to stay involved with renovation plans, but I struggle with this.

I took a look at my hopes for 2019 as I was preparing to write this review. I can be pretty satisfied with how I did on them. The only goal I didn’t meet, was to have a healthier lifestyle and lose weight. I’m doing okay on the healthier eating part, as I haven’t had binges much since coming to the care facility and make sure I don’t indulge into my every food whim. However, I don’t exercise nearly as often as I want to, though I get about as many active minutes as I did when living with my husband.

I did buy a new computer. Two, in fact, as I wasn’t happy with the Mac I bought and sold it to my mother-in-law. I am very happy with my current Windows PC though. Having a working computer again enables me to do so much more with my blog than I could when only using my phone. This helps me keep a regular blogging schedule too. Finally having found a feed reader that works in my browser, also helps. That was my only initial frustration with my current PC, as my Mac had a good feed reader and I struggled to find one for PC.

My last hope for 2019 was to stay mentally stable. I’m pretty sure I have reached this goal, as I’ve not been in serious crises at all. I’m also more than happy with how my staff handle my meltdowns or short crises as they do happen.

Key #SoCS

Posted on by Astrid

I have a key to my room on a keychain. I would originally get a key to the particular home I live in in the care facility. I ultimately didn’t end up getting one. This may be because there’s not been a need for it. I mean, I can’t go to day activities or whatever on my own anyway.

Another reason may be the fact that I ran off several times. The unit is semi-locked, in that you need to turn a particular key to be able to open the door to go out of the house. The other clients can’t work this key, so are in a minor way prevented from leaving the home.

I, however, can work the key. I didn’t know I could until one day in late October, I was in a crisis and needed to find staff. There is no-one on my floor from 10:15PM on, but there are call buttons and listen-in systems and such for people to call the night staff, who is responsible for the entire facility. Anyway, I tried to find help that particular time.

Another time, around three weeks ago, I ran off because my flight response kicked in. I worked the key again and let myself out.

After this, it’s been discussed to remove the key from the lock, so that staff need to open the door with their own keys and I won’t be able to elope on my own. So far, that action hasn’t been taken, presumably because the measure would be just for me (since no other client can work the key anyway). They probably think I’m responsible enough (or should be) to handle this freedom. I’m not sure how I feel about it.

I do also have a key to my husband’s and my house. The reason for this is more symbolic, as I never go to this house on my own. However, I like it this way.

This post is part of #SoCS, for which the prompt this week is “Key”.