An F in Phys Ed

One of Mama Kat’s writing prompts for this week is whether you played sports as a child and if so, to share a memorable game. I never played sports outside of school. That is, I attended one gymnastics class with my sister and a friend of hers at around age eight. I didn’t enjoy it one bit, despite normally liking gymnastics in physical education classes.

I was, to put it plainly, horrible at sports. Any sports. While gymnastics was my favorite part of physical education, it was more because I hated team sports and athletics even more.

At the school for the blind I attended for grades four to six, I was always picked last. Not just because of my lack of athletic capacity, but also because I was the only girl in my class. I don’t blame my classmates though.

When I attended mainstream high school, my phys ed teacher was also my tutor. He was great at accommodating me up to a point. For example, he let me run with a buddy. Of course, I was the slowest runner of the entire class. Looking back, I like to blame my mild cerebral palsy, but I still struggle to figure out what is due to that and what is simply due to my being fat. Not that I was fat at the time, but I wasn’t skinny either.

In my second year in this school, I hadn’t had any failing grades until sometime in February. My classmates complained that I got it easier than them, because for example I’d get extra time on tests. Whether this motivated my phys ed teacher or not, I’ll never know. We had to do gymnastics, a particular swing on the rings. I couldn’t really see what everyone else did, but I tried my best. And failed. My teacher explained to my father that I might’ve done the best I could, but he couldn’t possibly justify giving me a passing grade.

Like I said, he was my tutor. He almost took pride in being the first to give me a failing grade that year. Except that he wasn’t. That same week, I’d gotten an F in Greek too. That one was definitely justified, as at the time I didn’t face any barriers to learning basic Greek that my classmates didn’t.

From the next year on, I started going to a gym instead of following regular PE classes. I, after all, would never be able to attain the level of physical ability required for higher secondary school sports. I continued to attend the gym regularly throughout high school and for the first several years after.

Mama’s Losin’ It

#WeekendCoffeeShare (January 16, 2021)

Hi all on this grey Saturday. Today I’m joining in with #WeekendCoffeeShare. I just had my afternoon coffee about half an hour ago. If you want a Senseo though, I can make one for you. Let’s have coffee and let’s catch up.

If we were having coffee, first I’d ask you how your weather is. Ours is pretty cold, but the newspaper said it isn’t even really freezing. I guess I don’t really like winter if I consider this cold. Snow is forecasted for tonight, but I doubt it’ll even create a dusting of white. That’s fine by me as I don’t like snow.

If we were having coffee, I’d share that I guess I shouldn’t have said on Thursday that I am glad to live in a stable democracy. After all, the Dutch government collapsed on Friday. It’s totally justified though and no, it’s not about COVID. It’s about parents pretty much randomly being labeled as fraudulent childcare payment recipients and made to repay sometimes tens of thousands of euros that they didn’t have.

If we were having coffee, I would share that my father had his birthday yesterday. He considered the government collapse to be a welcome present, as he doesn’t support the rather conservative parties making up the government.

I phoned my father yesterday and he told me he’d also gotten some type of signal converter, so that he can read the status of his heating on his computer. I sent him a Kate Rusby CD, but it isn’t due to arrive until like the 25th.

If we were having coffee, I would share that I have been quite creative lately. I made a bath bomb on Thursday. I might take it with me into the bathtub later this evening.

My one-on-one staff also helped me bake cookies yesterday. Well, she did most of the prep, as the dough was too sticky for me to handle. That was a bit frustrating. The cookies were delicious though.

If we were having coffee, I would tell you that I had a long phone call with my husband yesterday. I am not going to go to our house this week-end, but I loved to hear his voice instead.

If we were having coffee, lastly I’d tell you that I’m hoping to get an AFO (ankle foot orthosis) for my left foot soon. The physical therapist already E-mailed the orthopedic equipment maker, but we haven’t heard back from him. Walking is still doable without the AFO, but when I go for long’ish (like twenty minute) walks, my foot drags. This is a little painful. It also causes my shoe to get damaged quite easily. In fact, even though the orthopedic shoemaker had already put some type of buffer thing on it, the shoe was almost beyond repair after three weeks. Anyway, I’m hoping the AFO gets here soon and will be helpful.

If not, my father mentioned that, back when I was little, the doctors had mentioned surgery to lengthen my calf muscle. That probably comes with its own risks though. Besides, as long as the pain and discomfort are manageable, I don’t think any doctor would want to operate on me just to save me buying a new pair of shoes every month.

What’s been going on in your life lately?

Sky Is the Limit #SoCS

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “Sky’s the limit”. I was immediately reminded of a story in Stephanie Kaars’ book Speciale mama’s (Special Mommies), in which this phrase inspired a mother to challenge her son, Sky, who had severe cerebral palsy, beyond his apparent limits.

It then made me think of how challenging someone beyond their apparent limits, doesn’t mean expecting them to be “normal”. I mean, the phrase which inspired the mother says that her son is the limit. In other words, each child or adult is their own limit of what they can achieve and this should not be defined by the person’s characteristics, such as disabilities.

I don’t have as severe a disability as Sky. I mean, yes, of course blindness is seen as a “major” disability for statistical purposes, but it alone doesn’t qualify anyone for long-term care. Severe cerebral palsy does. That being said, I do have a significant combination of disabilities: blindness, autism and mild CP.

I don’t think these disabilities, or rather the stereotyped perception others have about them, limits me. I mean, of course my disabilities impair me, but that’s totally okay. I am not limited by others’ ideas of what a blind person (as that’s my most visible disability) can or cannot do. Because, you know, even though I am in long-term care with the highest care profile in the visually impaired category, people still sometimes say I’m quite capable for a blind person. No, I’m not.

I am also reminded of the current slogan for the National Federation of the Blind: “I can live the life I want; blindness doesn’t hold me back.” The old slogan was: “With proper training and opportunity, an average blind person can do a job as well as an average sighted person.” This may or may not be true for the hypothetical average blind person, but it certainly isn’t true for me.

Is the new slogan? Yes, I think so. I could really go to university if I pushed harder, maybe. Maybe not, I’m not sure. However, I have no desire to go to university anymore. Similarly, I wasn’t dying living semi-independently. Well, I almost was, if you count the two medication overdoses I took, but those weren’t due to blindness. Then again, I am happy to live in my current care facility. I may still have things I want to improve on, but I for the most part do live the life I want.

#WeekendCoffeeShare (September 6, 2020)

Welcome to another Sunday and another edition of my #WeekendCoffeeShare. It’s past 8PM here, so I’ve had all my coffee for today. Still, if you’d like a virtual cuppa, that’s fine with me. We also have two flavors of Crystal Clear soft drink, neither of which I like, in the fridge, as well as my favorite Dubbelfrisss: apple and peach. Let’s have a drink and let’s catch up.

If we were having coffee, I would tell you that I’m still a bit tired. Like I said on Friday, I was sick on Thursday with diarrhea, nausea and a low-grade fever. Thankfully, the fever was gone by Thursday evening and so far hasn’t returned (yes, I did get it checked). However, I’m still very tired. I wasn’t yesterday. It could be a delayed case of sleep deprivation, as Friday night I got only a few hours of sleep.

If we were having coffee, I would share that yesterday, we had another online meeting of the cerebral palsy charity’s chapter in my province. It wasn’t as eye-opening as the one we had in July, but it definitely was interesting. We discussed whether COVID-19 has a more severe impact on CP folk than on the general population – the consensus was that, unless you have co-occurring breathing issues, it doesn’t. Then we discussed fear of suffocating and the reasons for our CP. Some of the participants were oxygen-deprived at birth. Some were not (like me) and some had no idea. From there, we discussed whether it’s useful to have access to your birth-related medical information, since CP occurs before, during or shortly after birth. Overall, I loved connecting to other people. In October, the CP charity will organize some online activities in place of the CP day that would’ve taken place on October 31 if not for the coronavirus crisis.

If we were having coffee, I would tell you that I miss my husband. Like I said on Friday, he couldn’t take the risk of coming by. I really hope we’ll be able to see each other next week.

If we were having coffee, I would tell you that there were quite a few new staff, student staff and people orienting at becoming staff at my home this past week. It was a little chaotic sometimes, because the staff need to explain a lot to these new people.

If we were having coffee, I would share that I had ice cream for dessert yesterday and today. There was hardly any custard and no flavored yoghurt, so I used that as an excuse. I could’ve eaten plain yoghurt of course, but didn’t. I loved the ice cream!

What’s been going on in your life?

Gratitude List (August 7, 2020) #TToT

Happy Friday everyone! I still have a lot I want to write about, but it’s soaring hot here and my brain is melting. For this reason, I’m going with a relatively simple post and do a gratitude list. As always, I’m joining in with Ten Things of Thankful (#TToT).

1. Barbecues. My husband bought a mini barbecue last week and we had sausages on it on Saturday. To get some healthy food in us too, my husband served us both a full plate of cherry tomatoes. That was funny.

2. Ice cream. Lots of ice cream! Like I think I said last week, the freezer was still full of ice cream from my birthday and the previous time it was hot. Well, my staff bought even more and so we had ice cream for dessert or as an afternoon treat several days this past week.

3. New shoes. I ordered new walking boots on Monday and they arrived on Wednesday. They are a size bigger than the ones I had before, as those didn’t fit well anymore with my feet swelling. These are pretty cool.

4. Getting motivated to walk again. I signed up for Steptember, a sponsored walking/movement event in support of the cerebral palsy community. At first I wasn’t sure whether to sign up, as I can’t make it to 10K steps every single day of the event. However, my husband encouraged me. I can’t wait to start walking a lot again. Not now though, as it’s incredibly hot, like I said. By the way, I’m not sure there’s an English-language site where you can donate.

5. Liquorice. I bought a bag yesterday and had some tonight. Yes, I still had it unopened by then. Okay, full disclosure, I did also buy a bar of white chocolate and did eat that one, but oh well. Oh, how I loved the black liquorice!

6. Reading time. I actually finished a book this week that I’d started a long time ago. I loved sitting up late at night reading, as it was too hot to sleep.

7. My staff. I was feeling very much on edge for the first few days of the week. On Wednesday, I even had to take a lorazepam again to calm me down. However, all through it, my staff were so very supportive.

8. All the lovely comments I get on here. You all are so special. I’m also so happy to be motivated for writing a lot again this time around.

That’s it for now I guess. What are you grateful for?

Gratitude List (July 17, 2020) #TToT

It’s been a while since I last did a gratitude post. I’m feeling okay. Not good, not too bad either. However, gratitude will be helpful at any moment. As always, I’m joining in with Ten Things of Thankful (#TToT).

1. A good meeting with the cerebral palsy charity. We “met” online via Microsoft Teams last Saturday. It was nice to get to know some people in my area, as this was a provincial meeting. We’ll “meet” again online on September 5.

2. Paracetamol. I was in some pain over the week-end. Thankfully, some paracetamol did help.

3. Lorazepam. I took one last Saturday too, as I was feeling a bit overwhelmed and wanted to sleep well. I got an okay night’s sleep and haven’t needed to take more lorazepam since.

4. Jewelry-making. I didn’t do too much of it, but I did make a keychain for my sister-in-law today. For the rest of the week, I’ve just been looking at all the wonderful things I could do.

5. Physical therapy. This Wednesday, the facility’s physical therapist came by. We had asked her to after the meeting with the CP charity had made it clear that I have no reason to keep going on with pain if there are still options. The PT assessed me and concluded I have tension all over. She put tape around the inside of my right knee, because I overextend it otherwise. That’s helped some.

6. A weighted blanket. I had asked my staff a while ago to inquire about me getting a weighted blanket. The PT said she had one with balls in it on hand. I didn’t like that one, but we did set things in motion so that I can rent and maybe later buy a weighted blanket.

7. Blueberries and candy. I went to the local supermarket with a staff today to by candy, but also ended up buying blueberries. These are all eaten now. The candies aren’t yet.

8. My husband. I talked to him on the phone a few times this week. On Monday, I was quite upset because I feel I may be deteriorating. My husband reassured me that regardless, I am okay the way I am.

I can’t think of anything else and I realize some of these are really blessing-in-disguise type of gratefuls, but oh well.

What are you grateful for?

I Am Overwhelmed

Yesterday I sat in front of my computer for an hour or more typing up a blog post, only to erase it again because I couldn’t find the proper words to finish it. Today I’m trying again.

I am horribly overloaded. To be honest, even the mere thought of having to write a blog post, adds to that. So why do I do it? I guess this post won’t get many views or much engagement at all, so why bother? Then again, I may be able to get my rollercoaster of emotions to slow down a bit if I write stuff down.

Last Saturday, I attended an online meeting of CP Netherlands, the national charity for people with cerebral palsy and their parents. I wasn’t sure whether to attend, as I’m not 100% sure my mobility impairment is severe enough to count as CP. Of course, the other attendees advised me to get a referral to a rehabilitation physician to find out.

Of course, just self-understanding isn’t a reason to get assessed for CP as an adult. However, I’m noticing that my mobility gets somewhat worse and I experience more pain. This could be my being overweight, of course. I will also get orthoses soon to help with the position of my feet. This might help.

In the meeting and later in the CP Facebook group, I shared how all my past professionals said my issues weren’t due to the disability they were assessing for. For example, the occupational therapist from the blindness agency said that my difficulties weren’t due to blindness. The OT for the psych hospital said my motor ability was more or less fine. At least, I didn’t have significantly less strength in my left hand than my right. The neurologist consulted when I earlier complained of worsening mobility, said it wasn’t my hydrocephalus either or if it was, my issues were not severe enough to warrant risky surgery. I agree. However, ultimately, my psychologist concluded everything was fine and I was just being dependent.

I asked my staff to talk to the physician for my facility and maybe the physical therapist about my mobility impairment. I after all do experience worsening pain and what may be spasticity. I’ll hopefully hear back soon.

Then today I experienced terrible sadness. I was overwhelmed by some sounds other clients made in the living room, but felt bad going to my room. My assigned staff said maybe I expect too much of myself. I mean, I’m half convinced that I’m deteriorating, which my staff doesn’t see. Maybe I indeed need to take a break. Lower the bar on my step goal now that my broken Fitbit won’t notice anyway. Stop wanting to write a blog post everyday, or really more than one. Be content with just two or three 20-minute walks a day and relaxing the rest of the day. I’m not sure. This feels so much like giving up.

Not Their Baby Anymore

Tomorrow is my 34th birthday. My parents came for a visit today. My mother, for the first time in so many years, didn’t openly reminisce about the time I was a baby. In fact, she seemed rather relaxed.

I was born three months prematurely. My due date would’ve been September 29, 1986 instead of June 27. Most if not all of my multiple disabilities are the direct result of my premature birth. I mean, it’s controversial to say this about autism, as most people in the autistic community claim it’s purely genetic. I have some genetic risk factors too, in that both my father and paternal grandfather are/were of the broader autistic phenotype. We can never be sure though how much my genetics contributed and how much the brain bleed and subsequent hydrocephalus I suffered did. In any case, my blindness and mild cerebral palsy are both due to my premature birth. My blindness is caused by an eye condition called retinopathy of prematurity and my CP is due to the aforementioned brain bleed.

As much as I sometimes seek to discuss my early childhood with my parents, I’m happy neither brought up the topic this year. They were in some rather brutal ways confronted with my current life. After all, due to the COVID-19 measures, I couldn’t be at my husband’s home when they visited. This was one of the first times my parents actually visited me in a care facility. When I was in the psychiatric hospital, either they’d visit me at my student apartment or later at my and my husband’s home. I think there were a few years, probably 2010 and 2011, when I had neither, but they always managed to take me out to some restaurant or something then. They were probably confronted with care facilities a few more times, but not in the past eight or so years.

A fellow resident tried to hug my mother when she came in. She didn’t comment. She did ask at some point whether my fellow clients can talk and I honestly replied that most can’t. When I told her there are clients in other homes I can talk to, she did ask why I didn’t live there then. I just said I didn’t have the right care profile for those homes or there was no available room.

Honestly, I’m totally relieved that my parents didnt’criticize me. I know they don’t agree with my being in a care facility. Still, they probably realized I’m not their little baby anymore.

Written for Fandango’s One-Word Challenge (#FOWC): baby.

Today I Feel…

Today I feel pretty awful. Several of my day activities staff were off sick, so I got assigned a relatively new staff. This was hard enough. To make matters worse, I was pretty badly overloaded all day. I did try to relax in the sensory room, but really couldn’t find my calm.

In the evening, I started a Dutch blog again. It’s been the umpteenth time that I started one and I’m not feeling too optimistic about how long I’ll be able to keep it up. Then again, I did finally find a way to link to it from this blog, so that I don’t have to keep switching primary sites each time I comment on a Dutch blogger for them to see it. Of course other bloggers seeing your content shouldn’t be the point of blogging. At least, it wasn’t my point when I first started blogging. I didn’t care about my stats. But that was over thirteen years ago. Now, of course I do care.

I saw a post by a Dutch disability blogger. That blogger in fact inspired me to start a Dutch blog again. She was discussing the notion of “mild” forms of impairments. I generally hate that notion, even though I still often fall into the trap of judging people, including myself, by it.

For example, I am diagnosed with level 1 autism spectrum disorder and probably level 1 cerebral palsy too. Only my blindness can be seen as “severe”. Even so, it’s of course the combined effect of these disabilities that causes me to need the support I need. Thankfully, the long-term care fudning agency got that in my case eventually. It doesn’t get it in some other cases.

Like, a friend of mine shared a newspaper article a few weeks ago about an elderly man who was profoundly hearing impaired, nearly blind and hardly able to walk but still too “mild” for nursing home funding. This man ended up taking his own life. I was incredibly saddened by this and at the same time, it made me feel guilty. I’m trying to turn this guilt into gratitude though.

This post was partly inspired by the first prompt in a 10-day writing challenge I participate in. The prompt was “Today”.

Why I Am in Long-Term Care

The day 1 prompt for this year’s 31-day writing challenge is “Why”. I immediately thought of the question that keeps popping up in my mind whenever I meet someone new at the care facility: Why am I in long-term care? Today, for example, I met a student doctor who was touring our home. I informed her midway through our conversation that I don’t have an intellectual disability, to which she replied that she could tell. Well, duh! Even when I’m overloaded, like I was at the time, and experiencing pretty bad language problems, I still sound like someone with at least an average IQ.

So why am I in long-term care? To a casual stranger, I could just point to my lack of sight and they’d be satisfied. Not a doctor or even a medical student, I guess. The medical advisor for the funding agency understandably concluded that blindness alone doesn’t warrant 24-hour care. Neither does mild cerebral palsy. And, as regular readers of this blog know, autism, being seen as a psychiatric condition, doesn’t count.

They finally found a way around this situation by saying that my disabilities are intertwined. They are, of course. In multiple disabilities, the whole is more than the sum of its parts. For this reason, the short answer to why I’m in long-term care is because I’m blind and autistic and have mild CP, not because I have any of these alone.

This is the legal answer. The way the funding agency found around the stupidly close-minded look at disabilities the law requires medical advisors to have. The long answer is, of course, that my individual care needs mean I need 24-hour proximity of care.

I have significant executive functioning issues. These cannot be objectified by tests because I’m blind and the tests of executive functioning that are available, are all visual. For this reason, the medical advisor wrongly concluded that I don’t have cognitive impairments. I don’t have an intellectual disability, but that’s not the same.

These executive functioning difficulties make it hard for me to take care of myself. I can do basic self-care activities with reminders and prompting, but then still I often mess up.

People, including my support staff, have used my blindness as an excuse for my difficulty with basic self-care. Of course I can’t see when my clothes are dirty, but if I were just blind, I would be able to prevent the most common causes of my clothes getting dirty. Like, I would be able to prevent myself from drooling over them, or I would be able to find other ways around it.

People also use my blindness as an excuse for my needing proximity of care. If I were just blind though, I would still struggle to know when staff had left the room, but I wouldn’t feel overwhelmed by it.

But I’m not just blind. Had I been just blind, I wouldn’t have needed to apply for long-term care. And yet, paradoxically, my care ground is blindness.