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”.

#WeekendCoffeeShare (December 6, 2025)

Posted on by Astrid

Hi everyone. Yesterday, I had tons of ideas on my mind on what to blog about but no motivation to actually write. Today, it’s the opposite. I’m joining in with #WeekendCoffeeShare even though I think I don’t have a lot to share today. I, as usual, had my last cup of coffee for the day about half an hour ago and am going to take a break from writing this post to have my soft drink and chips. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. For most of the week, it was chilly but not rainy with daytime temps around 7°C. Today, the daytime high was 10°C but it’s been raining all day.

If we were having coffee, I’d tell you that I was pretty active for most of the week, both by walking and one time by cycling to the next town just to have a purpose for cycling. I didn’t need any groceries and we only ended up having a snack, but at least we weren’t aimlessly cycling around.

Today though, I spent the entire day indoors and still need to dance or whatever to reach my movement goal on my Apple Watch. My streak for whatever reason is still stuck on 33 days even though I’m moving each day and it’s been stuck on 33 days for a month or so.

If we were having coffee, then I’d tell you that I had many plans over the past week but haven’t accomplished a lot. On Monday and Tuesday, I did create some Christmas decorations out of polymer clay. Yesterday, I attempted to bake cookies. They turned out okay but not great and the process was frustrating. Nonetheless, it was better than lying in bed or staring into space, which is what I’ve been doing a lot lately.

If we were having coffee, I’d cheat a little with the coffee share being about the past week, since there was none last week. I’d share about the meeting I had with the behavior specialist early last week. It went well. First of all, like I said, the “one chance” rule about orienting new staff got ditched. My assigned staff, who is in training to become my side of the home’s support coordinator now too, E-mailed me the new orienting plan yesterday and it looks pretty good.

We also discussed my day schedule. In the future, I’ll hopefully get more set activities. In preparation for this, my assigned staff created instruction cards for some of my activities, so that I can hopefully do more activities regardless of which staff is assigned to me. She E-mailed these to me too and I gave some feedback.

If we were having coffee, lastly I’d share that I’ve been having lots of memories lately. And by “memories” I don’t mean good ones. Yesterday, for example, I remembered the team meeting for my current home I attended in the summer of 2023. One of the staff, when I told them that I can’t prepare my own lunch, replied: “But you lived independently, right?”. I immediately got defensive, because yes, I technically lived independently, but I shouldn’t have. Yesterday when I was talking about this with my wife, whom I’d first met when living on my own in 2007, she told me more about how bad it actually was. Until a few years ago, I believed that, while I couldn’t cope, this was mostly a mental thing. In other words, I was falling apart mentally but could really care for myself if I hadn’t been so scared. Well, no.

It is sad to realize that part of the reason why I need so much care is lack of training in childhood, adolescence and to a lesser degree early adulthood. I’m still struggling with my parents’ reasoning that they couldn’t have taught me because I was too strong-willed and just didn’t want to learn. It may’ve been true that I didn’t understand why I had to learn something that caused me frustration, but then isn’t it the parents’ job to guide the child through their frustration? I’m honestly still struggling with this.

Disabled Ace Day

Posted on by Astrid

Hi everyone. I once again haven’t been active on the blog much. I’ve been listening to a lot of podcasts lately, mostly true crime. Today though, I decided to check out the podcast The Ace Couple. In their most recent episode, which came out today and which I’m currently listening to, the podcast hosts said that it’s disabled ace day today. Ace, for those not aware, is short for “asexual”.

Like I shared when writing my post for coming out day, I’m for the most part asexual. I’m still figuring out where exactly I fit on the asexual spectrum. For those who don’t know, since sexuality isn’t an all-or-nothing thing, asexuality is a spectrum describing anyone who experiences significantly less sexual attraction to other people compared to the general population. People who are not asexual, are commonly called allosexual (“allo” being Greek for “other”). This also clarifies that people on the asexual spectrum, even people who are altogether ace, may experience sexual desire and pleasure.

I do not claim to be an authority on asexuality. Had I been able to be open about my queerness all this time, I might’ve been able to gather more information without feeling guilty. Like I said, I’m still figuring things out.

This is also where disability comes in. Commonly, it’s thought that disabled people, particularly those with intellectual or developmental disabilities, don’t experience the same sexual feelings as non-disabled people do. This is simply not true, although disabled people are more often taught to suppress our sexual feelings. After all, particularly those with intellectual and developmental disabilities are too often seen as “children in adult bodies”. I myself have used these analogies when describing emotional development. Because it finally enabled me to get sort of okay care, this analogy appeals to me even though it’s inherently ableist.

When a disabled person identifies as asexual or somewhere on the ace spectrum, it is then too easily thought that this is because of the way the person was raised or educated. This is the counterstereotype I so often used to talk about in my early days on WordPress (oh my, I need to bring some of those old posts back): if we want to defeat the idea that disabled people can’t have sex, asexual disabled people could be seen as harming the cause, similarly to how I’m seen as harming the cause for community-based support by living in an institution. In reality though, prejudice and oppression are systemic, not individual. Besides, it’s not our job as marginalized people to fit ourselves into society’s neat boxes, whether these are stereotypes or counterstereotypes or other ways of telling us who we are and how we should live our lives.

This doesn’t mean I’m not influenced by prejudice. Regularly, I think I’m too disabled for a relationship and that’s why I’m ace. I’m pretty sure that’s not true, as I do have many years of being in a relationship with my wife before either of us clarified our authentic needs and wants to the other. I remember writing a post back in 2008, which I’m not going to bring back here (don’t worry, wife!), in which I described not knowing whether I was actually attracted to her and thinking I certainly wasn’t interested in sex. If that doesn’t tell me I’m ace, what does?

The more I write, the more memories confirming that I’m indeed asexual, come to mind. I was quite repulsed as a teen, purposefully skipping the biology chapter on reproduction and refusing to read the sex ed material that my parents brought me at around age nine. Then again, I’m pretty sure my refusing to read it was because I hated reading Braille at the time and my parents made quite a big deal of me reading this book.

However, what if my asexuality is in fact related to my being multiply-disabled, including autistic? Does that mean I’m doing the disabled or autistic communities a disservice? I don’t think so, because like I said before there’s no value in dictating who I am. Besides, as someone who lived for twenty years not knowing she’s autistic and yet who was autistic all along, chances are we’ll never know for sure.

I’m joining in with #WWWhimsy.

Simple Pleasures #SoCS

Posted on by Astrid

Hi everyone. Today’s prompt for #SoCS is “simple”. When I saw the prompt yesterday, I immediately thought I had to write about simple pleasures. You know, the little things that make life worth living when all else seems rather grim.

I could of course nag on about the cup of green tea. The one I got at 9PM one day over six weeks ago and that, while enjoyable, also triggered a flood of negative emotions because, really, is life all about a cup of tea? That being said, I’ve tried to make it a more regular habit to ask for a cup of tea at around 9PM.

Most of the simple pleasures I can think of right now, involve food, but not all do. Birdsong is also a simple pleasure I enjoy. So was a shower I took on Thursday when I was feeling particularly miserable.

As a multiply-disabled person living in an institution, I sometimes find joy in things that are out of the ordinary for me even though these things are normal for most people in my country and the rest of the developed world. They are, however, luxurious to people in less fortunate parts of the world. I also realize I am privileged to be able to go online when I want, as even in some other developed countries, people in the care system can’t. That doesn’t mean my life is easy. It’s not. I may have it better than people in many parts of the world, but that doesn’t mean my struggle isn’t real.

However, I do try to find positives each day. It sometimes feels like an obligation, because I used to be told all the time that I’m being negative on purpose. However, it does genuinely help me to acknowledge the simple joys each day provides.

Blindness Doesn’t Bind Me

Posted on by Astrid

I am blind. This is, in a sense, an advantage. Not because it means I’m more capable in some way than sighted people. Of course, I could be more capable than some sighted people in some ways, but that’s not due to my blindness.

I say my blindness is an advantage in that it allows me an easy explanation for my challenges when I don’t want to elaborate. Other blind people – those in the “competent blind adult” community – may think I’m setting a bad example. Honestly though, I don’t care.

I know blindness shouldn’t bind me. It shouldn’t keep me from achieving my goals. But neither should autism. Or mild cerebral palsy. Or any of my other disabilities alone.

But I don’t want to have to pull my every disability apart to see how it does or does not – or should or should not – limit me. I am not blindness, autism, cerebral palsy or whatnot. And yes, I know I’m more dependent than other people with my diagnoses. But I am not my diagnoses. I am myself and I lead a meaningful life as much as I can. And that includes not letting other people define what that is.

Written for Three Things Challenge #MM75. I didn’t know how to fit in the word “abound” and actually had to look up its definition to be sure I would, if using it, use it correctly.

Spoon Theory

Posted on by Astrid

Hi everyone! I’m back after more than a week of not touching the blog. I feel horrible for having neglected something I really love over the past few years, ie. my blog. However, I just don’t seem to have the spoons for it.

Spoons? This week’s prompt for #SoCS is “spoonful”. I immediately thought of spoon theory.

Spoon theory is a way of describing life with a chronic illness or disability that limits someone’s energy levels when compared to non-disabled people’s energy levels. I haven’t delved deep into it, but the way I understand it, each person has a set number of “spoons” or spoonfuls of energy. However, for a disabled or chronically ill person, daily activities take up more spoons than they would for someone who is currently healthy and non-disabled.

I was thinking of this when, after a dispute with one of my staff over temp workers, I wanted a way to explain how hard it is for me to deal with a temp worker, especially when they haven’t been told what to do with/for me, because “she can explain everything really well”.

For example, let’s say we each have ten spoonfuls of energy a day. The actual number doesn’t matter, but the point is it’s the same for someone who isn’t disabled, like the staff, as it is for me. For a non-disabled staff, their first spoonful of energy of the day might go to showering. For me, it goes to processing the staff’s greeting in the morning and figuring out who is going to help me with my morning routine. Then, if it’s a temp worker, the next spoon goes to introducing myself and figuring out whether I “know” them already (as some of them claim I should “know” them when they’ve been my staff just once many months ago). Then, another spoon goes to thinking of whether it’s a day I’m supposed to take a shower (which I hate, so doing it everyday to skip this step isn’t really an option) or just do a quick wash. Showering costs me at least two additional spoons, often more. Then it’s not even half an hour into my morning routine and I’ve already spent half my spoons for the day. I accept this reality, but additional spoons go into explaining my routine to temp workers even though a lot of it is in my day schedule. When a temp worker (or even a regular staff who rarely works mornings) helps me with my morning routine, this usually means I’m overloaded by the time I’ve finished breakfast.

And just so you know, getting up on my own and doing my entire morning routine independently, would mean I’d spent all of my spoons by the time I had gotten dressed or even earlier. I tried this when at the intensive support home, where the reasoning was that if you can do something physically, it doesn’t matter how much energy it costs. I was then told I was being “negative” for going into bed right after my shower.

For your information, spoon shortage does not just result in physical exhaustion. For me, it often results in mental overload, which I may show as a meltdown. Then people reason that melting down costs energy too so why am I “choosing” to spend my spoons on that? The thing is, meltdowns aren’t a choice.

I honestly feel that staff in general, not just the staff who refuses to support me after said dispute, need to be more aware of spoon theory. Then they’d understand better why I can walk for 45 minutes but not do my personal care completely independently. Hint: walking is just one action for me (putting one foot in front of the other). Oh, that’s two because I have two feet. However, my point is that walking isn’t nearly as complex a task as personal care is.

That being said, I feel that spoon theory would not just help me, but the other clients too. There’s a client here who “takes advantage” of the others by not doing any chores, according to the same staff who tells me I can explain everything perfectly fine so the temp worker doesn’t need introducing. She’s all for fairness and equality and everyone being the same. Newsflash: we aren’t. And who knows how much energy goes into this client’s everyday activities?

Okay, this post goes into the “Awareness” category because it’s not really a ramble. Well, it is, but it is also a post to raise awareness. I haven’t added the “#SoCS” ending to my post title because, well, not sure why but it didn’t feel appropriate. I hope that’s okay.

Abandonment Wounds: What Will Happen If I Can No Longer Mask?

Posted on by Astrid

I’ve been struggling with attachment issues a lot lately. Not related to a specific person this time. I mean, yes, like I said on Wednesday, four of my “favorites” among the staff are either on leave or will be leaving (be it temporarily or permanetly) soon. That’s not the problem, since I’ve learned the hard way to expand my list of “favorites” when necessary. It’s in my best interest too to avoid a situation like the one with my assigned staff in Raalte, who was leaving and left me with just two other trusted staff.

The issue I’ve been dealing with lately, is much more existential: the knowledge that, if I’m truly myself, I’m unacceptable. Not because I’m some kind of criminal. I’m not. Rather, I’m an outcast. And while I won’t be in the prison system for that, being shoved around care home after care home while not having family to advocate for me, will be equally horrid.

I have been struggling with memories of the circumstances surrounding that assigned staff leaving. A few months before she left, I sent her a rather dramatic E-mail about how no-one will be in my life forever. Well, my spouse says we’ll always be in each other’s life, but truthfully we can’t know that. Besides, when we lived together, there were just a little too many situations in which my spouse (understandably) was disappointed in me that are however things I couldn’t help. For clarity’s sake: I don’t blame my spouse, but maybe with my being multiply-disabled, I’m not suited for “traditional” long-term relationships. Ha, now I’m reminded that my spouse often reminds me that I said when we were choosing to be a couple, that I didn’t want a traditional relationship.

Of course, the reason I’m undesirable by society’s standards isn’t my fault. Like, I can’t help being disabled. But just because it isn’t something I choose, doesn’t make it any less real or hurtful. In fact, it hurts more because I can’t choose not to be me.

I mean, I’ve masked more or less successfully for many years. Mostly less successfully, but my parents prevented me from landing in the care system at a much earlier age than I did by claiming the police and other people who thought I was disturbed, were just stupid. They were masters at manipulating the system. I am not.

Back to my assigned staff in Raalte. She was the first to take my wish to leave seriously. I assume she genuinely felt that the intensive support home could better serve me than the care facility, but I also assume she had a team and a manager to deal with and it remains a fact that some of her coworkers couldn’t cope with my behavior. Which was, for the record, much less challenging than it is now.

It genuinely scares me to think of what will happen if (when?) I can no longer mask at all. There was this news feature sometime in 1997 or 1998 about a girl, aged about sixteen, who was too intelligent for intellectual disability services but who still couldn’t cope in adolescent mental health services and was, as a result, restrained long-term. After her family sought media attention, she was transferred to a treatment center for youth with mild intellectual disability and severe challenging behavior. I don’t know what became of her.

Last week, when I had several severe outbursts related to my most recent frustration, I begged my support coordinator to ask the behavior specialist to involve the Center for Consultation and Expertise (CCE) again. I really want to get the ball rolling on getting them involved before it’s too late and I’m being kicked out again, like the last time they were involved in 2018. In this sense, a consultation might help more this time, because at this point, as far as I know, staff aren’t yet so much at their wit’s end that they see the situation as unresolvable. But I’m scared of what will happen if they do get to this point, like apparently some staff in Raalte were.

If You Aren’t Prepared For an Imperfect Child…

Posted on by Astrid

Yesterday someone on Reddit’s Childfree sub asked why many parents-to-be have this idea that they’ll get the perfect child. You might say that having dreams for your unborn child is normal, and it is. Having this clear-cut image of what your child will (that is, should) achieve in life, is not.

Of course, there are thankfully many parents who are able to adjust their image of their child if (or rather, when) said child does not conform to their initial expectations. My parents, unfortunately, are not among them.

Like I’ve probably shared on this blog before, when I was a baby and sustained a brain bleed due to premature birth, my parents were concerned for my quality of life. This is more or less normal, although it wasn’t back in the ’80s. In fact, the doctor flat out told my parents not to interfere, since they were keeping me alive period. I am forever grateful for this, despite the fact that the same doctor admitted in 2004 that he sometimes meets former preemies he’d been keeping alive that he now thinks of: “What have we done?!”

At that time, I thought he would not mean me. I was still passing for “just blind” and, though blindness is considered a major disability, it’s one that by itself does not prevent someone from living independently and going to university.

That was the exact same reason my father, when talking about euthanasia of severely disabled babies in 2006, didn’t mean me. He did, however, mean those with intellectual disability and those with severe mobility impairments (the case at hand involved a baby with severe spina bifida). And I’ll never forget that he added to his statement that he didn’t mean me, “because you’re training to live independently and go to university”. As you all know, that didn’t work out.

My parents did find a workaround to the problem of my not being the perfect child they’d envisioned: they decided that my landing in the mental health system and now in a care home for those with intellectual disability, is my choice rather than a necessity. I haven’t fully processed all the ways in which this attitude, which some of my care professionals took over, has impacted me. It hurts though.

Now back to the idea of a perfect child. Even when disability isn’t involved, a child is their own unique individual, with their own strengths, weaknesses, wants and needs. When a parent decides that their child should go to university at eighteen even though they are still in Kindergarten, like my parents did, that doesn’t just impact a disabled child. It impacts any child for whom for whatever reason university isn’t the best place to go at eighteen. Such as, for instance, any child with an average or even slightly above-average IQ. Or any child that is more capable of practical jobs than of academic ones. And any child who, God forbid, doesn’t want to go to university.

If you aren’t ready for a disabled child, a child who isn’t a top achiever, a child who might I say has their own personality, by all means don’t become a parent. You don’t know what your child will be like, after all. Having dreams is alright, but be ready to adjust your image of your child when the need arises. And for goodness’ sake, don’t guilt trip your child for being themselves.

I’m linking this post up with this week’s #WWWhimsy.

Opportunities for Peer Support

Posted on by Astrid

Hi everyone. Recently I was talking to my spouse about ways to enrich my life and my spouse mentioned trying to connect to more people through peer support. I have some negative experiences with peer support, for example being kicked out of the Dutch DID peer support group for allegedly being a faker. However, once I’ve found the right tribe, peer support could certainly enrich my life.

Last Tuesday, I attended an online meeting for my regional branch of CP Netherlands, the Dutch cerebral palsy alliance. Even though I’m not 100% sure I have CP, I was welcomed with open arms. Originally, the organizers were thinking we may need to end the meeting early, as there were only five of us in attendance including them. However, we ultimately chatted the entire 90 minutes of the meeting. I even showed the other participants the polymer clay dinosaur my spouse and I had created.

One of the other participants is also visually impaired in addition to having CP. He told me there’s a “young people’s” (ages 25-45) meeting of the Eye Association (for blind and visually impaired people) in Zwolle. Zwolle is about 50km from where I live, so not too far away but not quite in my local area. This means I can travel there at a heavily discounted price using my national ParaTransit taxi card.

I also found out, when looking at the Eye Association website, that there are general meetings in Apeldoorn, Deventer and Zutphen, the three cities nearest to where I live. These meetings, since not catering to “young people” specifically, will most likely be mostly attended by people over age 50, but I don’t mind. I don’t yet have a local ParaTransit taxi card though, so can’t go there yet. My male assigned staff is going to apply for one for me though.

On Saturday, I attended the annual nationwide conference of CP Netherlands. It was less informative than the last few times I attended, since I knew most things the workshop leaders talked about already. However, it was much better with respect to peer support, in that I got to meet several people I’d either spoken with at the online meeting the previous Tuesday or met at nationwide conferences before. I also felt validated once again. And, yet again, I came away with the idea to finally ask my GP for a referral for rehabilitation medicine. Given that most likely my childhood medical records are all gone somehow, I’m pessimistic about getting any answers as to whether I actually do have CP or not. I’m trying to reason that this might be beside the point, but honestly my gut instinct is that it’s not.

I’m linking up with #WWWhimsy again.

Disability: Describing My Impairments #AtoZChallenge

Posted on by Astrid

Hi everyone. I know for sure I did a post describing my limitations on my now defunct blog, but don’t think I ever did one on here. Besides, even if I did, I learn something new about myself, including my disabilities, all the time. For my letter D post in the #AtoZChallenge, I thought I’d describe my disabling conditions in lay terms. Oh wait, the lay terminology is going to be really tough.

First, I am blind. I have what is called light perception, which means that I am able to see whether it is dark or light around me, but not what direction the source of light is coming from (that ability would be called light projection). Functionally speaking, even though I can still tell day and night-time apart and this is what sets the totally blind apart from those with any vision in medical terminology here in the Netherlands, I consider myself totally blind.

Next, I (most likely) have mild cerebral palsy (CP). I say “most likely” because my parents didn’t tell me whether I had any diagnosable condition that would explain my mobility impairment and I stopped seeing a physiatrist (physical disability doctor) when I was around nine. In any case, I walk with a drop foot on my left side that gets worse when I get tired. Though I can, with difficulty, walk a distance of about 5km at a time when I’m very energized that day, I do fall more easily than non-disabled people. I didn’t realize this until, several years ago, I read on a CP-related blog about fall risk assessments containing a question about whether you’ve fallen for any reason in the past year. Well, the blogger said hardly a week goes by that they don’t fall. That isn’t exactly true for me, since I hold onto someone’s arm or hand when walking, but I do fall at least once a month.

CP (or whatever it is) also means my fine motor skills aren’t great. I used to get physical therapy for this. I did exercises like touching my thumbs to each of the other fingers. I can now do that easily with my right hand and with some difficulty with my left. I cannot use a knife and f ork to eat with and, even with my specially adapted spoon, often make a bit of a mess. I can type and do so with both hands, but I much prefer to use my right hand and, even though I was taught the ten-finger touch typing, I don’t do it fully correctly. As long as it works, though…

Since CP is caused by brain damage, in my case a brain bleed sustained shortly after birth, it can also come with other difficulties, such as processing issues and lower energy levels. This can also be part of autism, which I was diagnosed with at age 20, of course.

Autism, of course, has its core symptoms of differences in social communication and repetitive behaviors and interests. Because I can hold down a reasonably normal-sounding one-on-one conversation about myself, as clinical assessments often are, I am diagnosed as “mild” or level 1. I am not “mild” by any means, truthfully.

I am tired. I was writing an entire rant on why I am nnot “mildly” autistic, but I was using all kinds of technical terms and I promised you a lay explanation. I don’t think this post makes much sense, but oh well.