Mother As the Giving Tree: Reflections on Conditional Acceptance

Posted on by Astrid

Hi everyone. Last Monday, I attended an online meeting for adults who spent time in the NICU as infants. It touched me on many levels. One thing that was mentioned was the fact that most NICU parents go through their own emotional process, which then is passed on somehow to their child in the NICU and beyond. For example, many parents back in my day and before didn’t know whether their baby would survive, so they didn’t attach to their babies as they normally would have.

I was also reminded of something I read in the book The Emotionally Absent Mother. In it, motherhood is compared to the giving tree in Shel Sinverstein’s writing. I don’t think I’ve ever read this piece, but its point is that the tree keeps on giving and giving and expects nothing in return.

I have been thinking about my parents’ attitude to me as a multiply-disabled person. When I suffered a brain bleed in the NICU, my father questioned my neonatologist about my quality of life and what they were doing to me. “We’re keeping her alive,” the doctor bluntly replied. My father has always been adamant to me that he wouldn’t have wanted me if I’d had an intellectual disability, because “you can’t talk with those”.

I have always felt the pressure of conditional acceptance. I’ve shared this before, but when I was in Kindergarten or first grade, it was already made clear to me that, at age eighteen, i’d leave the house and go to university. I tell myself every parent has expectations and dreams for their child. This may be so, but most parents don’t abandon their children when these children don’t meet their expectations and certainly not when it’s inability, not unwillingness, that drives these children not to fulfill their parents’ dreams. Then again, my parents say it’s indeed unwillingness on my part.

I still question myself on this. Am I really unable to live on my own and go to university? My wife says yes, I am unable. Sometimes though, I wish it were within my power to make my parents be on my side. Then again, the boy in Shel Silverstein’s writing didn’t have to do anything to make the tree support him either.

I’m linking up with #WWWhimsy. I was also inspired to write this post when I saw Esther’s writing prompt for this week, which is “giving”.

Brave Choices

Posted on by Astrid

A few weeks ago, I was in the mood for writing but didn’t know what about. I downloaded Google Keep on both my PC and iPhone and just started writing based on a prompt I saw on the See Jane Write website. I had never heard of this site. The prompts for the month of November were all two words long. The prompt I used was “brave choices”.

I doubt I’ve ever made a brave choice. Most of my major life choices were made out of fear or avoidance rather than courage. Either that or they were really other people’s choices I didn’t rebel against, or not well enough.

For example, my choice to live independently, wasn’t really my choice. I was pressured by my parents into saying this was my goal after completing independence training and, once everyone except for my parents agreed it wasn’t a realistic outcome, the pressure had increased to the point of being unavoidable.

Similarly, my choice to live with my wife, wasn’t really my choice either. She wanted it, but hadn’t realized all the complcating factors, like my substantial care needs. She had good intentions, mind you, thinking our love would conquer anything. It didn’t. Thankfully, I was able to make the choice to go into the care facility in Raalte before our relationship suffered irreparable damage.

If there’s one choice I made in my life that could be considered brave, it was this choice. My parents and former professionals would likely say this choice was made out of fear too. They might have been right. Maybe, if I’d been truly brave, I’d have been able to organize my own care whilst living with my wife. Then again, now that we live separately, neither of us wants to live together ever again.

I still wonder whether I could improve my life if I didn’t make decisions out of fear or avoidance anymore. I mean, the reason I rarely try out new skills of independence, is fear, namely the fear that my staff will always expect me to possess an ability I’ve shown once, as well as other related or even unrelated abilities. This fear isn’t unfounded, but it’s holding me back more than it should.

Values and Vision: Determining What’s Important in Life to You #AtoZChallenge

Posted on by Astrid

Hi everyone. I’m still struggling a bit, but I was pretty creative again today. Besides, I’m still going strong with the #AtoZChallenge and that’s an accomplishment in its own right. Today’s letter is V and I want to talk about values and how to have a vision for your life.

Like I shared when discussing positive psychology, living a life in accordance with your values is part of living the Good Life, which is the second step on the ladder to happiness. Having a vision in life, ie. something bigger than yourself to live for, is part of the highest step in happiness, the Meaningful Life. If it’s merely something personal you want to accomplish, a life vision can also help you if you’re “just” on the second step. But how do you decide on your values and create a vision for your life?

Most people live by many different values. When Googling, I actually found long lists of possible values. For example, one started with achievement, authenticity, autonomy, beauty and I’m pretty sure I forgot some starting with A and B. However, the key to living your life with intention is to narrow them down and decide which five or so are the most important to you. You may then even be able to choose two or three that are your absolute top priority. These are your core values and these will most likely be fairly stable throughout adulthood. Deciding whether your decisions align with these values, will guide you on your path towards a more meaningful life.

A way to figure out your core values is to have an honest conversation with your inner wise person, ie. yourself as a person nearing the end of their life. How would you like to be able to look back at your life?

You will, when you’ve figured out your core values, also be able to set a vision for your life. Put simply, this is what you ideally want to see when you reflect on your life near the end of it.

So are core values actually science-based? In general, yes, but it depends on how you use them. If you merely write down a few values and never actively work on living by them, you will not gain anything from them. Yes, that includes my choosing a word for the year and only thinking about it once a month when it was time to do my monthly reflection. However, if you hold all your important decisions up against your core values, they will certainly be helping you live a more meaningful life.

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.

My New Home? #SoCS

Posted on by Astrid

SoCS Badge 2019-2020

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “home”. How timely! As those who’ve read my blog over the past week or so will know, I may move to another care home in a week and a half. The choice is up to me.

It is indeed the first home that wants me, like when I applied for long-term care and landed here. Well, no, in that sense it isn’t the first. My current care home isn’t kicking me out, after all. If I don’t want to move to the prospective new home, if I don’t think it’ll feel like home to me eventually, I don’t need to.

It feels liberating to be able to make this choice. I have been able to ask quite critical questions, some of which were answered already and some of which I’m waiting on being answered soon. For one thing, I want to know about the staff/client ratio. This is important should my one-on-one ever be reduced, but also for those times when I don’t have one-on-one support. The support coordinator told me there are three staff each shift, but I’m not sure that’s just for my group of eight or for the entire home, consisting of two of these groups. I so far only saw my group’s home and that’s quite large already, so if the three staff are for the two groups of eight, that’s going to be quite difficult for me.

Other questions have been of lesser importance, such as whether they serve decaf coffee or the regular kind, whether we need to pay for treats such as chips on weekends, etc. I feel quite satisfied with most answers and am pretty positive I’m going to make the move. With my visit on Monday in addition to last Wednesday’s, I should be able to make an informed decision about whether this will be my new home.

A Courageous Choice

Posted on by Astrid

I was a shy, withdrawn teen who was loyal to my parents even though they didn’t have my best interest in mind. I mean, if they’d had their way, I’d have gone to university and lived on my own straight out of high school in 2005, even though I could barely take care of myself. That had been their attitude towards raising “responsible” children ever since I was a little girl: if I couldn’t – or in their opinion was too strong-willed to – learn a skill as a child, I’d learn it as an adult by myself. Or not. In any case, there was no safety net.

Though I do indeed feel that children benefit from learning by doing themselves, this was not how it worked in my family. I don’t blame my parents for not having the patience to teach me self-care skills, given that I got frustrated very easily, but I do hold them responsible for not having accepted the help they could have gotten. Though it might not have led to me becoming as independent as they’d want me to be, my current situation is about as far from that goal as can be. Then again, my parents hold me responsible for that. And I, in a sense, do too.

I was reminded of this situation when I read a journaling prompt that asked me to reflect on a courageous choice I made as a teen that’s still helping me today. I immediately thought of the choice to go into blindness training rather than straight to university once I’d graduated high school. Though this decision itself did not by far lead to the self-awareness I needed to try to get into long-term care, it was my first step into the care system. And, of course, as my parents predicted, I never fully got out.

Back in June of 2005, when I accepted the blindness training center psychologist’s offer to put me on the waiting list for the basic training program, I still had my head deep in the sand about my lack of independence skills. The psychologist did not. He suggested I go to a training home after finishing the program. He probably knew that, like many young people blind from birth, and especially those from families like mine who value academics over life skills, I wouldn’t be ready to move into independent living after a four-month, basic program. I wasn’t. I never would be. Till this day, I’m not sure whether this is my blindness or my autism or my mild cerebral palsy or what. I believe strongly that, with multiple disabilities, the whole is more than the sum of its parts. Thankfully, the authorities approving my long-term care funding, eventually agreed.

The Wednesday HodgePodge (April 27, 2022)

Posted on by Astrid

Hi everyone. It’s King’s Day, so I have the day off from my day activities. This means for me that I don’t have one-on-one support between 1:30 and 4:00PM. This in turn means plenty of time to blog, so I’m aiming for two blog posts today. First, I’m participating in the Wednesday HodgePodge for this week. As the questions went online yesterday and the host participates in the #AtoZChallenge too, her questions are all related to words starting with the letter V. Here goes.

1. What does the word values mean to you personally? Where did your values come from? What are some of the values that have guided you throughout your life?
I discussed some of this yesterday already. Values to me are those abstract qualities that are important in my life. Among my values are authenticity, connection, self-determination and growth.

as for where they came from, I’d like to say I developed them in spite of my upbringing. My parents are very success-minded and more concerned with outward appearance than authenticity. I do think my self-determination comes from my parents though, as they did somewhat raise me to make my own choices.

2. Your favorite vanilla flavored something?
I love everything vanilla really (well, except for vanilla coke, because I can’t stand fizzy drinks), so picking just one is hard. I’m going with ice cream though, yum!

3. What’s something you’ve seen/done recently that you found to be very difficult, very confusing, very helpful, very interesting, or very special. Elaborate.
Deciding to have a discussion with the behavior specialist on the possibility of finding me a more suitable care home. It’s been a very difficult, very confusing time. I thankfully have been able to share my thoughts with most staff, who all have been as supportive as possible.

4. Something you own and love that is violet in color?
I don’t think I own anything that’s specifically violet. I mean, I have a lot of shades of purple in my polymer clay collection, including lilac and translucent lilac, lavender, plum and a couple colors I mixed myself. However, none are exactly violet. I’ve heard it’s one of the harder colors to mix with polymer clay too.

5. Do you have vacation plans on the calendar this summer? Tell us more.
No, I don’t. I was joking around with my husband yesterday about going camping out this summer, but really, we haven’t been on vacation since 2014. I really would like to someday, but I’d go into a hotel then (like we did the last couple of times we went on vacation). My husband is off work for two weeks around my birthday in late June and two more weeks around our wedding anniversary in September. We may plan some extra time together then, but that’s it.

6. Insert your own random thought here.
I just want to share I went on a giant outdoor trampoline this morning. Last year this day, my assigned home staff asked me whether I’d like to go to a playground in a neighboring village that had a giant trampoline and I said yes. I was discussing ways to get out of my room today when I remembered this and so we went again. It was fun!

Reasons I Think I Want to Stay in My Current Care Home

Posted on by Astrid

Last week, I was discussing my insecurity about living in my current care home with my assigned home staff. I still keep searching for another place to live, even though staff keep reassuring me that I don’t have to leave. Part of the reason for this is probably habit, in that I feel I ought to be looking for another place because that’s always been the case. However, my assigned staff also challenged me to write down a list of reasons I want to stay in my current care home and a list of reasons I may want to leave. Today, I’m going to share my list of reasons I think I want to stay. I’m pretty sure I won’t be sharing my list of reasons I may want to leave, as these are more like things I am hoping to find a solution to within my current care situation. Anyway, here are the reasons I probably want to stay in my current care home.

1. My one-on-one support. Of course, this is government-funded and may be transferable to another care facility, but I do like the fact that my current care team really think my care is important, in that staff shortages won’t easily mean my care will be cut.

2. The fact that I have gotten to know most of my staff. Of course, no-one can guarantee they’ll remain part of my team for the foreseeable future, but if I leave, the whole team will be new at least at first.

3. The fact that my staff help me with activities of daily living. This is a bit of an uncertain thing, as I sort of feel I ought to be able to do more of them independently.

4. The fact that I get day activities in the home and am the only one who does for now. Even though it may be possible to get day activities in my room at another care facility, I might not be the only one. I like the peace and quiet during the day as it is now.

5. The fact that fellow clients hardly make an appeal on me. Most leave me alone most of the time. This is a good thing, but I did put in my other list that I wish to interact with other clients somewhat more than I currently do.

6. My own room with my private bathroom, kitchenette and balcony. Thankfully, shared rooms are no longer in existence within disability services as far as I’m aware, but shared bathrooms definitely are.

7. The weighted blanket the care facility paid for me to sleep under. I mean, seriously, if I were to transfer to a different care agency, I’d lose that too.

8. The Internet access. Pretty much unrestricted, mind you. At least, I haven’t run into any sites that are blocked by the care facility’s WiFi. At least social media and games are allowed. I’m not particularly interested in anything adult content, so haven’t checked that. I can also use the Internet whenever I please, including at 3AM should I so desire (which I occasionally do). I am pretty sure some other care homes would be more restrictive about this.

Overall, looking over this list, I think that, while things aren’t perfect, my care home is pretty good. Actually, I am quite sure it’s pretty much the best I can get.

loopyloulaura

A Letter to Myself Five Years Ago

Posted on by Astrid

Today, I stumbled upon a journaling prompt that asked me to write a letter to myself five years ago. I’m pretty sure I’ve done something similar to this at least a couple of times before. In fact, when I searched this blog for letters, I saw that I’d written A letter explaining my life at the time in early 2020, a letter to my younger self in general in October of 2018 and even a letter from my (then) future self in 2019.

Those who know the timeline of my life, of course, will not be surprised that I am going to pick this prompt anyway, as the “five years ago” part of the prompt is particularly significant. After all, it was weeks before I’d be kicked out of the mental hospital. I am not going to bore you with a timeline of the past five years in this letter. Instead, I’m trying to provide some new insights.

Raalte, March 27, 2022

Dear Astrid,

It is tempting to start this letter with a cliché, such as, “How are you?” However, I know how you are. You are struggling greatly with self-doubt and uncertainty. Fear of abandonment and attachment loss. You’d rather avoid taking the next step in your life, leaving the familiar behind to step into unfamiliar territory. Even though you’d rather not admit it, your psychologist is right that you’re scared of needing to become independent.

I want to let you know I understand. Independence is scary. The unfamiliar, leaving the psychiatric institution to go live with your husband, is even scarier. I understand you’d rather stay with unsupportive people you know, ie. in the psych hospital, than live with a supportive person, ie. your husband, under circumstances you don’t know.

And, to be honest, if I had a choice back when I was you, I’d not have chosen to live with my husband. The thing is, you don’t have a choice. Not yet. But you will, at some point.

Please, for my sake, hold on for a bit. Do what your psychologist tells you, but also stand up for your right to proper day activities and community support. It will be hard, living in the community with your husband. But things will get easier.

I am writing from a care facility. In 2019, I was approved for long-term care based on blindness. I also have extra one-on-one support. Please don’t tell your psychologist all of this, as she’s going to time travel right ahead to me and make sure my funding gets taken away. This is just between you and me, so that you know things will improve. I know they will get worse first, but please do hold on.

Looking to you, I do see that you struggle to let go of the familiar, even when it isn’t good for you. I sometimes think I face the opposite issue, chasing perfection rather than being content with what I have now. It’s a true balancing act.

I also want to let you know that, as much as you’d like to make your own choices, being allowed to make those choices also can be a burden. The fact that, now, I am free to stay in the care facility for as long as I want or leave when I want, is quite scary, I must admit. In that sense, your psychologist was probably right about my dependent personality disorder features.

I wish I could tell you that your attachment issues would be over by now. They aren’t. I’m still struggling with them, worse even than I was when I was you. However, I do have a supportive mental health treatment team now,for which I’m forever grateful.

In summary, please do believe in yourself. You have every right to feel that you need more support than your psychologist says you need. You just won’t get it yet. Eventually though, you will.

With love,

Your future self

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?”