#WeekendCoffeeShare (May 4, 2025)

Posted on by Astrid

Hi everyone. I’m once again joining #WeekendCoffeeShare on Sunday, as yesterday, I had a busy day and was too tired to write.

Today’s the day we commemorate Dutch people who died in World War II (and in every war, conflict and maybe they now count terrorist attacks too since). Only 5% of Dutch people currently were alive during our liberation on May 5, 1945. I never was all that much of a May 4 and 5 follower, but I have over the past few years learned to be more mindful of the freedom and rights I and those I love have, since they are more and more being threatened. For this reason, I think I’m going to do the two minutes of silence at 8PM this year. I hope I’ll have finished my post by then. I’ve just had dinner, so no coffee for me, but I’d love to offer you a drink.

If we were having coffee, first I’d talk about the weather. On Wednesday, we had our first day when, at the national weather institute in De Bilt, the temperature climbed to above 25°C. On Thursday, here it even got to 28°C. I read that the first day of temps above 25°C usually doesn’t happen until mid-May. I appreciated it though. Today, the daytime temp didn’t get above 13°C.

If we were having coffee, then I’d tell you I’ve done a lot of walking again, as well as riding the side-by-side bike. My May challenge on my Apple Watch is to double my movement goal twice. I already did it once so far, so that should be ridiculously easy.

If we were having coffee, then I’d share that one of the sick staff whom I’d made the polymer clay frog for last week, let me know via her colleague that she was really happy with it. I had originally asked another staff to pass the frog for the other sick staff on to her. Then, on Tuesday, that staff said it may be nice for the two of us to pop by the sick staff’s house on Wednesday so that I could personally give the frog to her. I did ask the staff whose idea this was to text her colleague to ask her permission for us to stop by, since some care workers with good reason don’t want clients to know where they live. Now I for one never even look up my staff online and would certainly not violate their living space. The sick staff gave her permission so one of the side-by-side bike rides was to there. The staff’s kids were home too and one of them asked me where I live. I, being awkward with young kids that I am, originally mentioned the institution town and then said I lived at [staff’s name]’s work, only to realize that [staff’s name] is “Mommy” to the kid.

If we were having coffee, I’d share that the other side-by-side bike ride was to a market once again. I resisted the urge to buy something, as I’d already been to the supermarket on Monday and I reasoned even just strolling the market is a nice experience. Besides, we did have lunch at a fish diner.

If we were having coffee, then I’d share I’m still struggling with the temp worker situation and how much energy goes into explaining everything to them. Sometimes, I think staff get me, while at other times, it seems as though they’re absolutely clueless.

If we were having coffee, lastly I’d tell you that, yesterday, I went to Nijmegen for a cerebral palsy meeting again. It wasn’t the nationwide CP day. That had been in early April but was held in a city that’s a two-hour journey from here, so I hadn’t gone there. Nijmegen is about a 45-minute drive in good traffic. This meeting lasted three hours total and there was no theme. Rather, we gathered in a restaurant and had lunch and some drinks and just chatted. I have met many of the participants a few times before, but there were a few newcomers too. With one of them, I chatted almost the entire time, because we had so much in common. She recommended a few resources to me too.

After the meeting, I had decided to go to my best friend’s parents’ house (ack, “in-laws” is a lot shorter 😉). My best friend picked me up in Nijmegen and drove us there. My best friend’s sister was there for a bit too with her one-year-old son. I really don’t do well with kids, although this one is a lot less loud than my nieces.

I didn’t get back to the institution until 8PM yesterday and went to bed shortly after 10PM. I’m honestly still quite tired.

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.

The Downside of Praise

Posted on by Astrid

As a child, I was often praised excessively for my achievements. I remember one day, when I did calendar calculation at a family get-together, calculating what day of the week May 3, 1327 (for example), was, my mother exclaimed: “She’s sublime, she’s a genius!” For those who don’t know, many autistic or otherwise developmentally disabled people, including those with lower measured IQs, have this skill as what is stereotypically called a “splinter skill”. Now don’t get me started on the ableism of the term “splinter skill” when applied to people with lower measured IQs, but calendar calculation alone definitely doesn’t make someone, anyone, a genius.

And just so you know, it’s incredibly counterproductive to praise a person for who they are rather than what they do. It is usually better to praise someone for their achievements by naming those achievements as well done rather than praising the person themself. Moreover, any excessive praise, even if you say “you did an awesome job calendar calculating”, can be taken the wrong way.

Besides, many people feel they are praised for something that doesn’t reflect their personal values. For example, when I am praised for completing a personal care task, all I see is pressure to be able to do it independently the next time too. When, however, I am praised for creating something nice out of polymer clay, for my writing or the like, I feel like I’m valued for my contribution to the world.

There is, or so I’ve read, some school of thought that says any praise, whether person-centered or accomplishment-based, should be avoided by parents or carers. This doesn’t mean parents or carers should completely ignore their child’s achievements. Rather, simply pointing them out and engaging with the child about their achievements, will, according to these people, help the child develop a healthy sense of self. Honestly, I am inclined to agree with this.

Youth: Issues Specific to Intellectually or Developmentally Disabled Children #AtoZChallenge

Posted on by Astrid

Hi everyone. Phew, we’re almost done with the #AtoZChallenge. For my letter Y post, I thought I’d talk about issues specific to youth with intellectual and developmental disabilities.

Children, disabled or not, by definition, are still growing and developing towards their full potential. As a result, most developmentally and intellectually disabled children and young people will not qualify for long-term care. They are, instead, served under the Youth Act, which falls under the local government. This means that their parents or carers will need to reapply for care at least every year.

Most children with intellectual or developmental disabilities will go to school. Like I mentioned before, those with milder disabilities, due to “suited education”, are forced to go into mainstream classes. This particularly applies to autistic or otherwise neurodivergent children with an average or above-average IQ, but when doing research for this post, I found out that children with a mild intellectual disability (IQ 55-70) won’t qualify for special ed unless they have additional needs too.

Children with moderate to severe intellectual disabilities and those with mild intellectual disabilities and additional issues will usually go into special education. Usually, these schools have different educational levels depending on the severity of the child’s disability. I heard that some schools allow pupils in the highest level to take part in the lowest level regular school, called practice education, part-time. Practice education has only recently become part of the regular, diploma-earning educational system; until I think last year or the year before, pupils in these schools would just earn a certificate.

The most profoundly disabled children, who are deemed “unteachable”, will go to day centers for children and adolescents with intellectual disabilities. Some of these day centers do have a “school prep” group too.

I feel very strongly that “suited education” and the Youth Act leave behind a lot of children with intellectual and developmental disabilities. I mean, the government wants to cut the youth care budget even more and, though I understand this given the fact that one in seven children nowadays receives a form of youth services, this should not affect children with genuine intellectual and developmental disabilities. Like myself twenty to thirty years ago, though in my case being left behind was due to my parents’ denial.

Kids: Being Childless Sort Of By Choice #AtoZChallenge

Posted on by Astrid

Welcome to day 11 in the #AtoZChallenge. For those who followed me on my old blog last year, I chose “children” for the letter C post then. I can’t remember what I did my K post on and am too lazy to look it up, so I’m just taking the opportunity to talk about children again. I hate the word “kids”, but oh well.

You see, I have no kids. At 32, this is a bit abnormal already and it’s becoming more so as I age. The reason I don’t have kids, is complicated. Let me explain.

As a child and teen, I always thought I’d have children as an adult. Even during the time, in my mid to late teens, when I thought I was a lesbian, I thought it would be a given that I’d have children. I didn’t imagine a man in my life, nor did I think of how else I’d conceive, but I always knew I would have kids.

This changed after my major psychiatric crisis when I was 21. For the first year or so, I was busy with merely surviving and getting to see a future for myself other than suicide. Then, my post-traumatic stress symptoms started to emerge.

When I was 27, I made the conscious choice not to try to conceive. I had in the meantime met and married my husband and he agreed. He would even support me if I’d want to get sterilized and said I would most likely have no problem geting the procedure done, given that I’m multiply-disabled. He’s likely right, even though this is extremely ableist.

I know I, personally, couldn’t care for a child. This doesn’t say anything about other people with my combination of disabilities, but it is true in my case. Having made this decision puts me somewhere on the fence between childless and childfree. I am in communities for both on Facebook and find that I’m a little out of place in both. Over the years, I’ve moved more towards the childfree side, as I am realizing I don’t experience my biological clock ticking. Rather, my wish to be a parent is more based on societal expectations. As I once said, I’d want to be a Mommy blogger. Well, I guess that’s not the right reason to try for kids.