No Reason for Alarm, Apparently #SoCS

Posted on by Astrid

Hi everyone. I’m pretty frustrated right now. This is in part related to the usual struggles with my day schedule, ie. the fact that the only thing that’s clear about it is when I have support and when I’m supposed to be by myself. I’ve explained a zillion times that I need my activities to be more structured but the staff keep saying I can’t do any meaningful activities when I’m in distress. This may be partly true, in that polymer clay, baking and cooking are harder for me to do when I’m in distress, but when there’s no clarity about which activities I’ll do, the sheer magnitude of the list I have to choose from, overwhelms me before I can even decide whether I’m in good enough a mental state to do such an activity.

Another thing that’s been bothering me, are my physical symptoms. I’ve had horrible tremors for a few years already, but over the past year or so they’ve steadily gotten worse. My institution’s physician tells me to distract myself when it happens because it’s probably in part stress-related. However, I can barely operate my phone or computer when my hands are trembling and all the activities that I can do on my own that would at least in theory distract me, involve my iPhone or computer.

Yessterday, the tremors were so distressing and also my leg was in a constant state of tension. The tremors mainly affect my right side, while the muscle tension was on my left side. I have mild cerebral palsy affecting mainly my left side, so it’s kind of understandable that I’d experience spasming in that leg. However, there’s no known explanation for the tremors. Yes, they could be psychosomatic, but they could also be due to medication (one of my various psychiatric medications), some kind of long-term effect of my cerebral palsy, or any combination of these.

Knowing that my doctor doesn’t see a reason for alarm, is somewhat comforting. At least there’s no reason for me to believe I have a neurodegenerative disease. That doesn’t mean the thought doesn’t creep up on me at times though. However, even when I am able to realize that I’m not suffering from Parkinson’s (not that my tremors are at all similar to those someone with that disease would suffer from), the tremors are still debilitating.

On Monday, the staff are going to ask my GP’s nurse practitioner about the symptoms yet again. My intellectual disability physician tells me to distract myself, apparently believing my symptoms are psychosomatic. I’m pretty sure the nurse practitioner is going to say the same. However, if only those telling me my symptoms are all in my head and due to stress, could help me lessen that stress!

This post was written for #SoCS, for which the prompt today is “alarm”.

#WeekendCoffeeShare (August 15, 2025)

Posted on by Astrid

Hi everyone on this warm Friday evening. I’m joining #WeekendCoffeeShare. I usually do mine on Saturday, but I’m motivated to write now so let’s make use of it. I just had my evening soft drink and a single-serving bag of chips. I’d recommend you’d grab something to drink if you were here. Let’s chat.

If we were having coffee, first I’d talk about the weather. It’s been hot all week. In fact, I’m pretty sure we have a local heatwave, meaning five days in a row of daytime temps above 25°C, of which three with daytime temps of 30°C or above. I haven’t checked the news in months and don’t want to check it now, but I don’t think it’s a national heatwave.

If we were having coffee, then I’d share that, thanks to the nice weather, I was able to eat outside three or four times this past week. Did I share my spouse gifted me a new outside table, because I’d broken the one I’d gotten last year? My spouse had ordered it online and had had it delivered to the institution. We hadn’t seen each other since, so yesterday after a lot of pestering, I decided to snap a picture. I rarely take pictures fully independently, so if this one’s unclear, I apologize.

If we were having coffee, then I’d tell you I’m still going strong with my movement and exercise goals on my Apple Watch. On Saturday, I did in fact break my active calorie record. Yesterday, I broke a record with the longest bike ride. My Apple Watch also said I burned the most calories during a cycling workout, but I doubt that’s true.

If we were having coffee, next I’d announce my participation in the Walk on Sunshine on October 4. It’s a walk to raise money for the Dutch cerebral palsy charity CPNederland. The goal is to walk at sunrise. Sunrise is at 7:45AM that day and the staff usually don’t get here until 7:30, but one of the staff agreed to come here early and do the walk with me. I signed up for the 5km walk, because that’s a challenge for me particularly in the morning, but not impossible.

If we were having coffee, lastly I’d tell you all that I’m still struggling. I experience a ton of trust issues towards my staff and am not sure these are entirely unfounded. Like, today my spouse and I were on the phone during my entire late afternoon activity and, though it was nice to talk to my spouse, I worried that the staff are going to cut my care hours because of it. After all, for some time they tried to make my spouse visit me each Sunday so that they could cut my hours.

Honestly, I think I’d be much more independent if I knew that, when I have a bad day or a bad moment, I can always get some extra support. In this sense, my psychologist back in the mental hospital was right that anxiety is part of the reason for my dependence. However, her subsequent actions to “treat” me, ie. kicking me out of the hospital into independent living with minimal support, actually worsened my situation. So did my staff’s decision back last year about my having to compensate for every moment I needed extra support due to distress. These and other strategies, while intended to encourage self-reliance, actually achieved the very opposite. After all, my abilities fluctuate and my mental state doesn’t adhere to a day schedule, so that I’m only in distress when I have one-on-one. No, I don’t purposefully work myself up in order to get more support, but my mistrust of my staff’s continued actual support does lead to distress.

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.

#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.

#WeekendCoffeeShare (April 19, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare tonight. It’s almost 11PM here, so definitely no more coffee for me. If you’d like to grab a drink, feel free to and let’s chat.

If we were having coffee, first I’d talk about the weather. We finally got rain. Not as much as was originally thought and not nearly enough, but we got rain. The temperatures have also been lower, usually around 15°C. This is still warmer than normal, but I still yearn for 20°C.

If we were having coffee, then I’d tell you that, as a result of the rainy weather, I haven’t walked as much as I did in previous weeks. I still kept my perfect streak with respect to my movement goal on my Apple Watch, but didn’t meet my exercise goal everyday.

If we were having coffee, I’d share that I’ve finally been crafting again. I created a polymer clay bear holding a heart for my support coordinator, who is on maternity leave. Unfortunately, one of its ears fell off during baking, but thankfully I noticed it in time and was able to add a new ear.

I also made another attempt at creating a polymer clay trinket dish today, but failed once again.

If we were having coffee, I’d report that I had a meeting with the intellectual disability physician, who prescribes my psych meds, on Wednesday. The good news is that I’m allowed to further taper my antipsychotic. The bad news is no answers regarding my tremors. She thinks they may be related to my spastic cerebral palsy and this means that they can get worse when I’m stressed.

If we were having coffee, I’d tell you that I had a dietitian’s appt on Wednesday too. This went well. I’m staying in a sort of acceptable weight range and not having binge eating episodes or purging. My next appt will be in three months.

If we were having coffee, I’d moan about the temp worker situation once again. On Wednesday, when like I said I had two appointments, the staff wanted to orient a new “regular” temp worker to me. As soon as they told me, I told them that this wasn’t going to work out that day, but they kept telling me to see what’d come out of my doctor’s appt first and then we’d discuss it again. Well, no-one ever allowed for any discussion after the appt and, when the time came for the worker to be oriented, the staff doing the orienting kept pushing me in overt and covert ways to accept him. Like, the temp worker was constantly sneakily, without talking, being in my presence. This gave me a horribly unsafe feeling, because I, being blind, couldn’t be sure whether he was there or not.

The staff doing the orienting at one point seemed to show some understanding and told me she was going to talk it over with the other staff. She came back to tell me that it’d been agreed between my assigned staff, the support coordinator, behavior specialist and the team manager that, if I refused him now, I’d had my chance. She never told me who’d told her that when she was “talking it over”, so I assumed it was my assigned staff. I still refused the temp worker and to this day feel horrible about the whole situation. I mean, this whole agreement among the powers-that-be is showing that they believe I refuse staff for their one orientation moment just because I feel like it. Honestly, I still disagree with that whole thing about just one orientation moment and then they’re as regular as the regular staff who’ve worked here for years.

At one point, I went into the communal room and another staff, one of my “favorites”, was there. She asked me what was up and I explained that I had two appts that originally the staff didn’t think I could handle in one day and now they added this orientation thing to it too. The temp worker was present too and I told him it wasn’t that I didn’t like him, but he hadn’t even spoken a word to me during his previous shifts here and now he was creeping up on me. He apparently had been instructed to do so. The other staff understood and I actually talked a little to the temp worker.

Unfortunately, when I read my daily log notes for the past week today, I saw there wasn’t a single word about how I’d talked to him eventually. Neither was there anything about how I’d accepted the other temp worker (who’d had her orientation moment with me last week) for my activity on Tuesday, nor that I showed the new student staff my clay yesterday on his first shift here. This is relevant because it signifies that they’re still only reporting my challenging behavior and not the things I do accomplish in spite of the stress it gives me.

If we were having coffee, I would once again end on a positive note by sharing some small pleasures of the week. First was the BBQ on Thursday. It was good. Next up is a visit to the next town’s market yesterday. My spouse was a little surprised that I didn’t buy olives, as I usually buy those when going to the market. I did buy candy. I also went to the supermarket to buy some ingredients for my smoothies. We also went to that town’s coffee shop run by disabled people and had the most delicious caramel latte.

Speaking of which, I’d tell you that I’ve been having a new interest lately: coffee brewing. I’d really like to be able to create my own coffees. Still need to look into all the necessary supplies, but it should be fun.

#WeekendCoffeeShare (May 11, 2024)

Posted on by Astrid

Hi everyone. Today I’m joining #WeekendCoffeeShare. It’s been a long week, honestly, so time for a cup of coffee, green tea or a smoothie. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s been quite warm and sunny most days, with daytime highs around 20°C. Tomorrow, the temperature is even supposed to reach 25°C. The mornings have been cooler though, as it’s not yet July, obviously. Which makes me think, with temperatures like this in May, will we get a soaring hot summer again? Most likely. I love warm weather, but it’s not like I want summertime temps over 35°C.

If we were having coffee, I’d tell you I’ve been walking a fair bit over the past week. I also rode the side-by-side bike yesterday. We finally figured out how to make it so that I can actually push the pedals properly rather than just moving along with the person who’s on the steering side of the bike.

If we were having coffee, I would tell you that, on today’s morning walk, we came by the intensive support home and several clients were calling out to me. I decided to come over and join them in their backyard. Eventually, one of the staff who did work there when I still lived there, joined us and offered me a cup of coffee. I think that’s nice!

If we were having coffee, I’d share that, finally, it looks like my orthopedic shoes are actually good to wear. The last adjustment was to the front, which scratches the ground due to my ever-worsening drop foot, causing the shoe to need repairing almost on a weekly basis. Now, it’s not like it doesn’t still scratch the ground and get damaged, but not nearly as much as it used to. And the big positive: I can actually wear these shoes without getting blisters. Like, okay, that’s normal, but I only used to be able to wear my specific brand of walking shoes and I’d get blisters from everything else, including every pair of orthopedic shoes I’ve tried before. I have actually been wearing these shoes most of the day for the past few days without a problem.

If we were having coffee, I’d report that, speaking of my drop foot, the physical therapist has been here. We went for a 20-minute walk, during which I didn’t walk with a drop foot as much as before, thankfully. It hasn’t had me convinced that my mobility isn’t worsening, but at least it isn’t as bad as I’d feared. I mean, it could just be normal aging with mild cerebral palsy.

If we were having coffee, I would share that I bought yet another pair of new headphones. Originally, I wasn’t intending on giving up on my AirPods, but because they keep losing connectivity to my computer, I needed headphones that come with a wired option. Well, guess what? The wired option for the JBL Tune 770NC headphones isn’t all that awesome, but the headphones don’t lose connection to my computer when connected via Bluetooth. Besides, it can be connected to both my iPhone and computer at the same time. How I wish I’d known about these before buying the AirPods, that were literally three times the price of these headphones.

If we were having coffee, I’d share that I also finally replaced my desk chair. I got a gaming chair. That’s the reason I have been wearing my orthopedic shoes all day: the chair is too high for me to sit on without shoes on. Other than that though, it’s much better than my previous chair.

I also ordered a table and two chairs for in my little backyard. These weren’t in stock at the store I went to, so I’ll have to come back to collect them. While at that store, I saw a really cute unicorn soft toy and just had to get it.

If we were having coffee, lastly I’d admit that I have been struggling with my mental health again and, as a result, haven’t been too inspired in the creative department recently. I do really hope to get back into the groove soon. I did, last week, buy some kitchen tools, like measuring spoons and a sugar/flour sieve. I’ve only used the measuring spoons for smoothie making so far, but that’s a start at least.

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.

Hello Monday (August 7, 2023)

Posted on by Astrid

Hi everyone on this first Monday of August. How are you all? Let me share about my weekend. I’m also sneaking in a bit about today, because I don’t think I can devote a separate blog post to the topic and it needs talking about anyway. I am joining in with Hello Monday.

Saturday started out pretty good. My assigned staff came to do my one-on-one for the morning. My schedule did get somewhat distorted because she came up with the idea of us clearing out my wardrobe. I didn’t mind at first, but I didn’t realize until it was too late how overloading this was.

Then eventually, after having had a shower, getting dressed and having had breakfast, I realized I’d forgotten the steroid cream I’d been prescribed for my eczema. I asked my assigned staff to help me apply it. “I’ll show you how, then you can do it yourself,” she said. Fair enough, you might say, but by this time I was well and truly overloaded. I sighed, to which my assigned staff made a comment about me being a “big girl” and that I could stomp my feet all I wanted (I didn’t). Once she got down to showing me how to apply the cream, she kind of curtly told me to relax my hand (which, well, having mild cerebral palsy, I simply can’t), then asked why I can’t. I got quite thick layers of cream on some parts of my skin and nothing on others, but in the end it didn’t matter, as the cream she’d grabbed was the oily lanette cream rather than the steroid. I do understand my staff meant well, in the sense that she’s trying to encourage independence. However, I often don’t realize how overwhelmed I am until it’s too late and at that point, any further demands will lead to me shutting or melting down.

Saturday evening was pretty good. We had home-cooked macaroni for dinner, which I loved! I actually was allowed a second helping.

On Sunday morning, my one-on-one arrived 25 minutes late, claiming it was only 15 minutes and that it just was what it was and deal with it. Then at lunchtime, she wouldn’t leave my room after I’d finished my drink (I wasn’t eating because I’d be having lunch out with my spouse), claiming she was making up for the time she’d been late in the morning. Well, it isn’t just sitting in my room that helps me. If she could’ve taken that time to help me with an activity that needed doing rather than just “chilling”, that would’ve been appreciated, but she couldn’t.

Thankfully, my spouse arrived around 1PM. We drove to Apeldoorn once again and, after a stroll around the city, decided to have lunch at Backwerk once again. I had the same old chicken barbecue baguette. Hema was closed, so we just had a drive around, then stopped by Aldi in the town next to where my institution is (I’m pretty sure those who live in the Netherlands know which town I’m referring to, if I haven’t shared it already). I wanted to get some nuts and Tuc (a kind of salty biscuit), which my dietitian allows me to snack on later in the evening. My spouse also got apricots, so I also bought those. And of course the perpetual Kinder Bueno. Then my spouse drove me back to the institution.

Once there, it turned out one of the staff had car trouble, so didn’t arrive till 4:30PM. Of course, it was my one-on-one that got cut. One of the other staff made it sound as though they were buying us French fries and a snack to make up for it, which I considered rather lame. Then after we’d finished our fries at 4:50, the staff informed me bluntly that my day schedule would be followed from there on, so I would have one-on-one again at 6PM. I felt this was ridiculous, but had no choice, as the staff were using stupid emotional reasoning to get me to agree with them.

In the evening, I did show my one-on-one how to make beads out of polymer clay.

Now on to my cheating by sharing a bit about today: this morning, my support coordinator informed me that he was going to attend the team meeting for my new care home to answer some questions about me, but that he thought I could answer those questions perfectly well myself. I agreed and went with him. Some of the questions made me feel a little uncomfortable.

The first question I got, in fact, referred to my drinking excessive water. That happened exactly once and was an impulsive act. I decided to broaden the topic and explain about my preference for how staff deal with my impulsive or self-harm tendencies, ie. by not giving more attention than needed to the behavior but to stay supportive of my emotional needs. I did forget to mention that wounds do need to be checked, something that doesn’t always happen here.

Overall, I mostly felt validated, in the sense that at least the team didn’t respond negatively to my comments. I did find it hard to walk the fine line between being too bluntly honest about my needs and delivering a sales pitch of myself. I hope I did okay though.

Older People With an Intellectual Disability #AtoZChallenge

Posted on by Astrid

Hi everyone. I’m halfway through the #AtoZChallenge and this means I’m getting a bit weary of it. Today’s post for the letter O is going to be short I think, as I covered issues around cognitive decline in older people with intellectual disabilities already yesterday. However, today I want to focus on aging in general.

People with intellectual and developmental disabilities are at increased risk of developing chronic health conditions at a younger age compared to those without disabilities. These risks sometimes vary depending on the cause of someone’s intellectual disability. For instance, people with Down Syndrome, like I said yesterday, are at increased risk of developing early-onset Alzheimer’s Disease. People with Fragile X Syndrome are at increased risk of heart problems. People with cerebral palsy (which isn’t in itself an intellectual disability, but can be comorbid with it) are at increased risk of developing type 2 diabetes, high blood pressure, stroke and various issues related to their mobility impairment, such as bone problems.

I once heard my staff at my previous care home say that, for people with significant intellectual disability, you need to add at least ten years to their chronological age to get their biological, health-related age. Of course, this doesn’t mean no severely intellectually disabled person can live into their eighties or even nineties – several at the care home next door did. However, it’s a rarity.

People with mild intellectual disability even more so than those with more severe disabilities often live into old age. This poses challenges to the healthcare system as well as causing these individuals dual risk of discrimination, based both on their age and their disability. Additionally, some older adults with mild intellectual disability, who may or may not have been identified as such, are caregivers to their even older parents.

Some people with unidentified mild intellectual disability end up in nursing homes as they age, where staff are not equipped to support them with their disability-related needs. Here in the Netherlands, thankfully, the intellectual disability care system is quite good, and most agencies have homes for older adults.