Things I do to manage holiday overload

I have a large extended family. A very large extended family. The small fraction that lives in this tenth of the continent numbers well into the double digits, and we number well into the hundreds if I only reach out three generations on the family tree. No matter how carefully rested I am or how prepared I am, I will have times when I visit in a small house with so many people (the people-to-bedroom ratio currently is about 4:1. Earlier, it was 5:1. The word “sardines” comes to mind as a metaphor) that I will experince sensory overload. This is an unavoidable function of too many people in a small building. Especially since 1/3 of the people here are children. Children are loud. Especially when stressed, cranky, and tired, as holidays are wont to make children.

I am especially vulnerable to noise when I, myself, am stressed (as holidays make me), tired (as sleeping in a strange place makes me), sick (as visiting family makes me, thanks to my asthma and their pets), and/or busy (have you ever had a holiday season that wasn’t busy?). This is the first year that I have managed the entire holiday visit (so far – and I leave tomorrow morning, so it seems I will be successful) with only a few close calls and no full meltdowns since… ever. In my entire life, this is the first time I have ended up only in tears at night in bed, and not yelled or screamed or cursed or needed to go for an hour long walk to cool my head after making a spectacle of myself or [insert other seemingly self-destructive action here] once. I am getting better at this adulting thing.

So, to make notes on how this year managed to be my first successful holiday year since infancy: how did I cope? In no particular order:

• Running errands. Did someone forget the ketchup? How about corn starch for the gravy? Any forgotten thing is an opportunity for escape from cacophony for a few minutes/hours. When I was a kid, I’d offer to accompany my parents. As an adult, I offer to run out to pick these things up. I seem helpful, and I get a break from noise. Win/win.
• Doing chores. In particular, solitary chores. Are cars covered in snow? Is laundry in need of washing or folding? Are porches in need of shoveling? Any chore that involves an out-of-the-way quiet room or time outdoors is an opportunity for a break. Again, I seem helpful, but I also get a break from noise and general sensory overload. Win/win.
• Reading breaks. Books are a special interest for me. When I get too overwhelmed, if I can’t get alone, I read. Substitute with an appropriate special interest. If small relatives enjoy said special interest, you can get them out of their parents’ hair while taking a break from following busy conversations.
• Naps. Fatigue is meltdown fuel. I fight it at all costs. If earplugs and blanket forts are necessary, employ them. This is likely more necessary for me, with my chronic conditions that are all flaring up due to triggers and/or stress, than for most, but I have adopted a biphasic sleep cycle for the duration of my visit because asthma fatigue is kicking my behind. People might be hurt or annoyed if I miss a sprogling relative’s developmental milestone in favor of sleep, but they will be hurt and annoyed if I end up ruining a meal with tears and screaming. Self care is not selfish. Don’t let anyone tell you otherwise.
• Managing chronic conditions. If I feel like shit, my mood is shitty. I am no different from an NT person that way. If I keep my chronic illness as controlled as possible, I have more energy to devote to coping with noise, bright lights, busy conversations, and too many people.
• Frequent bathroom breaks. A bathroom break is a breather from activity. Whether or not I actually need to use the bathroom, I make a point to duck away to it every hour or so for about five minutes, just to get away from everything. A few minutes sitting in the dark listening to white noise from a fan can make the difference between a cheerful dinner and me screaming profanity across the table at certain relatives when I hit my point of no return and start to snap at everyone because everything everyone says is like knives stabbing in my ears. If someone asks if I’m feeling under the weather, I can truthfully answer “yes” even if it’s not for the reason they think, but in my experience, people simply don’t notice.
• Dressing entirely for comfort. I have spent the entire visit in exercise pants, T-shirts, and sports bras. Being comfortable eliminates a huge stressor and makes it a lot easier to deal with other discomforts (like squalling infants).
• Eating when hungry, not when food is available. I don’t hunger well. At all. Ever. Ordinarily, I have two settings: Full, and “Feed me now. I’m so hungry my stomach hurts and I want to rip the hair out of anyone who so much as looks at me funny.” (this likely has a lot to do with the fact that I routinely forget to eat for hours/days on end). Multiply that by 100 when I’m already stressed and overloaded. Waiting for food is not something I can do well ordinarily. In the holiday season, it’s just not possible. So if I am hungry, I eat. I don’t care if there’s only 20 minutes until lunch. If I am hungry now, I am eating now. If need be, I can have an orange or some salad as a snack now and just give myself a smaller lunch portion later. Miffing someone because I didn’t eat enough of their casserole is much better than snapping at everyone who says two words to me for the wait until dinner.
• Operate in risk minimization mode, and give up aiming for perfect. I am not going to perfect. I can’t. However, I can operate in a way that minimizes my risk of meltdown. This is more pleasant for me, but until this year I thought it was being selfish. This year, I realized it’s really not – my desire to try to be the “perfect” eldest sibling is what’s selfish. If I do adequate self-care, it’s more pleasant for everyone involved – for me, because I don’t have a meltdown, and for everyone else, because they don’t have to deal with me screaming profanity at the universe on top of dealing with small children, animals and their own holiday stress. Don’t try to be the storybook perfect sibling. Try to take care of myself. In so doing, it seems that I’m also helping to take care of everyone else by keeping extra work off their plate.

What PSAs and TV don’t tell you about asthma

… is that it is bloody exhausting.

My first warning symptom of a flare is fatigue. I mysteriously am too tired to go for a walk, or breathe heavily from walking up stairs, or feel like going to bed an extra hour or two early. It’s subtle. Easy to miss.

My most destructive symptom of an asthma flare is exhaustion. Like, “I woke up two hours ago, but I need a nap.” Or like “I slept 14 hours last night, but I’m still yawning.” Or… take your pick. I know it’s asthma when I take my reliever and feel like I magically had an extra few hours of sleep infused into my brain in the 10 minutes it took the med to take effect. When I’m having a more substantial flare (like now), it’s enough to get me to able to stay awake, but not enough to get me to feeling not-tired. I need to get away from asthma triggers before it will resolve.

The exhaustion makes spending time with small relatives, socializing with family, and following conversations (all expected holiday activities) difficult, if not impossible. I’m too damn tired to try to emulate playing dolls with a child, or pleasing coos at a baby, let alone to follow or participate in a many-way dinner table conversation.

I think sometimes that I perceive chest tightness as fatigue. Because unless my chest is painfully tight, I don’t notice it. I do notice, though, that I’m tired.

And, boy, am I tired.

On that note, I’m going to bed early tonight.

Freaking asthma.

Happy holidays

I wish you all good food, good beverage, good family and good times.

Happy holidays!

Sick

I was sick earlier this week.

Soooo asthma’s acting up. Like whoa.

Will be quiet till my lungs start to behave. Stress + illness + travelling soon + busy + holidays => everything is hard. Saving energy for holiday visits and suchlike.

And lots of Ventolin doesn’t exactly help – side effect = tremor. Hard to make food and suchlike.

Storming. Had to shovel. Lungs don’t like shovelling when asthma flareup.

I have an inflammed feeling in my chest. And lots of coughing. Not fun. Yellow zoning. Hope it works and I don’t end up on pred. Pred sucks.

That is all.

That’s all.

 

On juxtaposition

This post made me realize why people who were the adults in my life when I was a kid don’t understand why I feel they blamed me for being bullied, for being sexually harrassed on the school bus, and for myriad other things that happened to me as a kid.

“We never said it was your fault,” they say. “We’re just trying to help. If that’s the message you take from it, that’s your problem, not ours.”

What they fail to realize is the effect of juxtaposition. When you put two different abstract things close together, that creates an implied compare and contrast. It’s used everywhere: In literature, in news articles, in scientific papers, and in daily conversation. If you’ve ever seen someone say, “If you do that like this, it works.” after you’ve tried and failed at something, you’ve experienced the effect of juxtaposition. Your way doesn’t work. This way does. Implied is that you’re doing it the wrong way.

Likewise, when they chose to talk about boundaries after I’d been sexually harrassed, or to talk about social interactions and how not to be so damn weird after I’d been bullied, the juxtaposition of the two things creates the implication that the bad thing was my fault.
Even if it wasn’t. Their protests that they were trying to help only further this implication because in a dispute, you in principle should try to resolve it by getting the person in the wrong to change their behavior, not by trying to get the innocent party to change theirs.*

Because of that, when they were trying to get me to change my behavior and refusing to even try to get the bullies to change theirs (“kids will be kids,” after all), I got the message that it’s okay to bully, and that I deserved the bullying for being so damn weird. And, by extension, I got the message that adults’ condemnations of bullying were just so much bullshit, and that adults were liars and untrustworthy, however nice they might seem.**

So, parents and mentoring adults of bullied kids: I’m not saying you can’t work social skills, but for the love of all that is good in this world, consider what you’re juxtaposing your advice with and the implications that creates. Working social skills after a kid makes a faux pas that hurts someone’s feelings? Fine. Working social skills after they were jumped and beaten up at school, came home in tears over teasing, or were rejected from a group of kids playing? Not fine.

Think about juxtaposition. Think about the message you’re sending.

—

*I get that this is not always the case – victim blaming is often a thing. But this is how adults teach conflict resolution to kids, and this is the social rule I had back then regarding conflict resolution – if the adults are yelling at/lecturing/coaching me over it, it’s my fault. A modified version of this rule still exists for me: If I’m the one getting yelled at/lectured at/coached, the person doing the yelling/lecturing/coaching thinks I’m at fault. Difference is that now my social rule makes allowance for the fact that they might be wrong.

**This was a common theme for me. When adults said one thing and then did another, I felt they were dishonest. As a kid, my view was very black-and-white on the issue. They say Y. They do X. X and Y are mutually exclusive. Therefore, they were lying about Y, was how my reasoning went. Now, I see that there are shades of grey – maybe they have no idea where to start with tackling bullying and think it’s easier to teach me to pass. Maybe they think they’re protecting me. Maybe they had no idea just how bad it was because everyone else was minimizing it. Who knows? I’ll say this: The pain, fear, and distrust these actions by the adults in my life instilled are very real, and lasting.

Accommodations: Not about taking care of people

There is a common and major misunderstanding among currently-able people that accommodations for mental illness, intellectual, and developmental disability are about taking care of the disabled person. This is a wrong-headed attitude to hold.

Why?

You take care of children. You take care of pets. You take care of your garden. You take care of things and people incapable of making decisions for themselves.

By contrast, you help your friend. You help your neighbour clean their driveway. You help a coworker with a project. You help people who have the agency and ability to make decisions for themselves.

Do you get the difference?

Personal living assistance, such as people to help a person with hygiene or making food or doing their taxes or what have you, isn’t about taking care of a person with a mental illness, intellectual disability or developmental disability. It’s about helping them with their living. When done properly, the PWD still have choices. They still have agency. They still have power over their own lives.

I don’t do my own taxes. I can’t. I’ve tried, and I can’t. Rather, I can but it takes a week of working on nothing else and daily meltdowns. Bureaucratic bullshitese and my brain do not get on well. In my current life, I don’t have time to take the two weeks off that getting taxes done and then recovering from taxes would entail. So I get help with it. Does that mean I’m incapable of managing my financial affairs and someone has to take care of me? No. It just means I need help with taxes. The people who help me with taxes understand that I’m a capable person who just needs accommodation in the taxes department.

And that’s the key. Living assistance isn’t having a “carer” – it’s having the necessary accommodations for your diability(ies) so that you can live your life with the greatest level of autonomy and quality possible. It’s not about having someone take care of you. It’s about enabling you to take care of your own life.

On “big words”

So, this post by Paula Durbin Westby got me thinking on something utterly unrelated to the boycott: Big words, and my use thereof.

Like Paula, and the young man she describes in her post, I started to read at a very young age. Now, they would call a kid like me “hyperlexic” – I’m fairly sure I knew how to read before I knew how to talk. I used to read the dictionary. I speak accordingly. It’s not uncommon for me to pick more esoteric vocabulary over common words because the more common word doesn’t mean precisely what I was trying to convey whereas the less common word does.

People used to think that I was using “big words” to impress. That I was “trying to seem smart,” or that I was showing off. (FYI: Asking someone if they think you come off as pretentious in such a situation will just aggravate them and seem to prove their point). I wasn’t. I don’t. I use “big words” unconsciously, because it’s the first word that comes to mind for what I’m trying to say, and also because I’m trying to be as clear and precise as possible in my speech. When I was a kid, my teachers would joke that they had to carry around a dictionary when I was in class. More recently, I’ve had coworkers stare at me blankly when I use words they’re not familiar with, and it’s not uncommon at all for the kids in my martial arts class to stare at me blankly and go, “Huh? I don’t know what that word means. I’m [age]. I don’t know those big words.”

Being a person who reaches instinctively for “infuriating” over “makes me so angry” or “defenestrate” over “throw out the window,” and who has favorite words (defenestrate among them) comes with trouble. Partly because, as I said, people assume you’re being pretentious when you use big words. Partly because people don’t understand what you’re saying and so get frustrated and angry, and partly because cognitive accessibility of communication is an important thing. Business buzzwordese gets me going, “Huh? What is this? I don’t understand.” unless I have the mental energy to spare to decipher it. So can poorly-written academic jargon.  Likewise, I’m sure my way of speaking (and writing) might do that to others – particularly to those who don’t have a vocabulary as large as mine.

And, partly, it’s troublesome because whenever I write, I have to read and re-read, and re-re-read to make sure that I’m not using words that will come off pretentious. When I speak, I have to mentally process my planned sentence and decide whether I really want that big word or if I could get away with a smaller one. It’s another one of my “normal people” mental emulator subroutines. And I usually fail. Because I literally can’t think of another way to say the thing I’m trying to say that is acceptably close in meaning to what I’m getting at fast enough to seem natural.

And even when I do think up another way of saying it, I might mess it up in another way. With non-verbal cues, like tone of voice or body language. Case in point: As a kid, I had a hell of a time with slang. Because my intonation would be off when I said it, so other kids would make fun of me for saying a slang term in a strange way rather than saying something was “fascinating” instead of “neat” or “cool”. As an adult, slang is still difficult, both in intonation and in appropriate times to use it. I sometimes forget and use internet slang at work, for example.

I guess what I’m trying to say is that my language is all over the place. It’s an eclectic mix of rare words, anachronistic idioms, 90s kid slang and internet memes. And I do none of it to be pretentious or to try to sound smart – I just say it that way because that is the best way that my brain can think of at that moment to say what I want to say.

 

What helped when I had a phobia

I no longer have a phobia. I still have a fear of the thing I used to have a phobia of (needles), but I’ve brought it down to a level that is manageable. I challenge myself with it every few months by donating blood, just to remind myself that I can do it now.

It used to be that needles would make me throw up, pass out, and cry. Not necessarily in that order. At its worst, I often refused medical treatment and made decisions on what activities I wanted to do because of the fear. I refused to get treatment for dehydration from a stomach bug because it would involve a needle. I refused treatment for a broken bone because it would involve needles. I had dentistry done without anesthetic because anesthetic would require needles (having a cavity filled without anesthetic is not something I would recommend). I didn’t go rock climbing even though I love to climb because I was worried that if I fell, I’d need a needle. I couldn’t watch needles even on TV, and if I was surprised by a photo on a newspaper during flu season (y’know, the seemingly-obligatory restrained screaming toddler  getting their immunization), it usually would induce a panic attack.

Just to give perspective. It was all-encompassing.

The reasons for the phobia are immaterial to what I want to talk about. Which is fear. And what worked for me in overcoming it. Snagglebox has a good post up on the topic from a professional/parenting point of view. Here’s my take:

Why I’m going to #BoycottAutismSpeaks

Why? Many reasons:

Firstly, Autism Speaks (AS) is perhaps the only disability rights charity in the world (certainly, the only one I’ve heard of) that is routinely and widely criticized¹ and protested² by those whose interests it claims to have at heart.

On the topic of religion

Hey, fundamentalist Christians in general,

Let’s make a deal. I won’t compare you to Mary Queen of Scots or the leaders of the Spanish Inquisition if you quit comparing me to Pol Pot and Stalin, K?

Actually, I already don’t compare you to religious tyrants and war-mongers of history. Even if you share their religion. In fact, the only time I’ll point to those people is to show how theocracy can be really really bad. And you know what? You don’t have to argue with me that forced atheism would be bad. That’s not what I’m aiming for – I’m aiming for secularism. So quit with the false dichotomies while we’re at it.

So, Christians in my life, how about you extend me the same favor I’ve already extended towards you and not engage in dehumanizing rhetoric by comparing me to your pet bogeyman? Address my arguments, not my religious beliefs or lack thereof. 

Regards,

Me