Changing Seasons and Sensory Sensitivities

This sounds really familiar!

Musings of an Aspie

These past few weeks I’ve had a sensory comfort zone the size of a postage stamp. There are a few things playing into my increase in sensory sensitivities* and one of them is definitely the change of seasons. Transitioning from summer to winter or vice versa is surprisingly demanding.

I think the biggest factor is the constant sensory adaptation. During the winter and summer, the days are pretty consistent from one to the next. It might be uncomfortably hot or cold, but at least my body knows what to expect each day and dressing appropriately doesn’t require a lot of forethought.

Spring and fall, on the other hand, are filled with unpredictable days. Yesterday was t-shirt weather. Today I have on sweats and a thermal shirt. Three days ago I left all of the windows open overnight because it was uncomfortably warm in the house. This morning I dashed…

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Echolalia and Scripting: Straddling the Border of Functional Language

I can so relate to this!

Musings of an Aspie

The Scientist and I went out to dinner last Friday night. It was the day after I’d taped my radio interview and I was feeling wiped out, so we decided to treat ourselves.

During the course of dinner, the waitress made many visits to our table, asking the questions that waitresses do.

How are you tonight?

Would you like me to bring any ketchup or hot sauce?

Is there anything else I can get you?

Would you like more water?

Do you want to see the dessert menu?

To every one of those questions (and perhaps others I don’t remember) I replied, “I’m good.”

“I’m good” made sense the first time and is an okay answer for the others, assuming I didn’t actually want more water or a dessert or need anything else. Except that I did want more water. I was just too tired to override the default script…

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And the weekend is right around the corner. Now I can get some things done.

blue sky over the prairie
Just keep going…

I hate being really busy. Some people love it. I hate it. I find it confusing and irritating and counter-productive. “Don’t think, just react,” seems to be the battle cry of the modern world, but if you think about … how far has that gotten us?

I think we could do with more thinking and less reacting. Living life like it’s not a game being played for fun and profit, but simply — yes, simply — doing the best you can with what you have.

Things have been cooking… I’ve talked to two recruiters in the past week about potential jobs. Neither of the two prospects was a good fit, and that helped me clarify more how I want to move forward. I’ve been wanting to “hole up” and dig into a future in cutting-edge data. You know, just block out the rest of the world and live my life with data.

But as much as I would like to dive into a sexy new field, I’m not sure I really want to be chasing after that. I’m not up on all the latest technology, and people are looking for pretty intense qualifications. I could get those qualifications, but it’s more trouble than feels worth it. Plus, it’s not good for me to huddle off in a corner by myself and never have contact with other people. I really need interaction. If I work from home more than 1 day in a row, I start to get irritable and irrational. Interacting with people — not just numbers — keeps me sane.

Rather than trying to rekindle the glory of my past (when I could spend hours and days and weeks on end all by myself, wrangling with code), I now want to focus on more social types of work — more interactive, more socially stimulating. I work well with techie people. Geeks. Nerds. Subject matter experts. I love trading knowledge and trivia tidbits. And they get along with me pretty well, I have to say. Because we’re “of a kind”.

And at this point in my life, I need to stick with what I’m best at and develop from there, not cast about, looking for the next greatest thing. The tech scene is totally different, today, than it was 20 years ago. I should know. I helped build it, 20 years ago.

Anyway, these are just some things on my mind. Work has been extremely busy, lately, and nobody knows what’s happening… if we’re going to have jobs in another few months. There are rumblings in the rumor mill (of course there are, when aren’t there?) In the midst of it all, I’m extremely busy with my work — so much so, that I haven’t had as much time as usual for my own interests. Like this blog.

I have a handful of other irons in the fire, and I’ve been working on them. But everything feels rushed and cramped, and I hate that feeling.

Busy. Too busy.

What I actually realize about myself is that I push myself to busy-ness when I get tired. And I’ve been getting more and more tired over the past weeks. So, I have added more stuff to my plate, which is not helpful.

It’s unsustainable.

So, I’ve been getting more sleep, lately. And I’ve been thinking more strategically. Not just diving in with “tactics”, but stepping back and figuring out how I can do what I want to do in a more clever, more manageable (and sustainable) way.

Lo and behold, I got some ideas.

Some of it has to do with having a longer timeline for some projects — not having to have them done right away, but giving them time to percolate, so I don’t sink a ton of time and energy into things that aren’t actually good ideas, to begin with.

Some of it is about keeping things simple. Just narrowing my focus and concentrating on a select set of a handful of projects, instead of casting far and wide and spreading myself too thin. I forget just how scattered I can get, how my brain gets going around developing side-interests, off-shoots of concepts and ideas and interests. When I get tired, I’m even more susceptible to that tendency. And I’ve been tired.

So, how to avoid this in the future? I’ve gone ’round the barn on a handful of boondoggles, over the past weeks, and I need to not have that happen again. I’m doing what’s necessary to keep myself on track now, and I need to keep that up.

The weekend is coming. I can get a whole lot done, when I’m focused and concentrating on what’s in front of me, instead of letting my brain get scattered and run in every conceivable direction.

Less is more, sometimes. And I’ve got a lot to do. So, it’s time to do less. And get more done.

Yes! The weekend. I have a feeling this is going to be good.

The day after that inevitable sleepless night

sleeping chameleon
I’m feeling a little out-of-it today.

So, my sleep has been going really well, lately. I’ve been getting anywhere between 7.25 and 8.5 hours a night, regularly, which is great.

Last night was not one of those nights. I tossed and turned, couldn’t get comfortable, had a lot of aches and pains, couldn’t turn my head off… you know the drill. And all the while, my head is thinking, “Dude, you need to turn yourself off. Now.

Easier said than done. I think I got maybe 5 hours…? If I was lucky. And now I’m feeling out of it, foggy, irritable. Not the way I want to feel, first thing on Monday morning.

Every now and then I have a night like that. Sometimes, it can’t be helped. Of course, my schedule was way off — I changed things up in a big way, yesterday, and went for an afternoon swim with my spouse. We’ve been meaning to get to the really excellent saltwater pool of a hotel about 20 minutes from home. They have a great fitness center, too, and they’re less expensive than a lot of fitness centers I’ve been to. Plus, they have “adult time” blocked off for adults who just need to do laps. Or sit in the hot tub.

My spouse has some pretty significant mobility issues, and they need to get in a pool and move — take the gravity pressure off — as well as sit in the hot tub for a few minutes to ease the back pain.

So, we actually got our sh*t together and headed up the road shortly after noon. Got there in good time. Signed in, changed, and headed for the pool. We took our time, obviously, because of the mobility business. But before long, we were in the water.

Unfortunately, the guests weren’t honoring the “adult time” block — there were a bunch of screaming kids in the water, splashing around and generally being kids. That made it a little challenging to just chill out and do exercises/laps. Eventually, the kids left, so I could do some laps and my spouse could do their water exercises in peace. Then the hot tub… just sitting in the water and soaking felt fantastic.

I also got to spend some time in the sauna. They have one of those, too, which is a huge bonus for me — I’ve been wanting to get in the sauna for years, but haven’t had access — more on that later.  I didn’t stay in too long (that’s not healthy — 10 minutes tops is recommended). But I did get a bit of heat, which is so important. Especially on cold rainy days like yesterday.

So, I got in a swim on the weekend, which is huge for me. And I can do it again, anytime I like. I got a sauna. I didn’t get on the weight machines, but I can do that some other time. They have good machines. A whole range. I look forward to using them.

And my spouse got their workout in, which is borderline epic. They’ve been saying they’d do it for months and months. And now it’s happened. And that’s a very, very good thing.

When we got home, I was wiped out. Just spent. I needed to sleep, in any case, and then the workout pushed me even further. So, I got a nap, when we got home. I slept for 2 and a half hours… then lay in bed for another 15 minutes. By the time I was up and around, it was late. I had to make supper. Then we watched the latest Jason Bourne movie. And that cranked me up. Then I got in trouble for putting my spouse’s delicates in the dryer (I put them on low, which is basically just tossing them around in a cool breeze, which I thought was fine). And it looked like I’d ruined one of their favorite tops… until we read the label, and it turned out I’d actually done exactly what they told me to do…

So, there was lateness.

And excitement.

And arguing.

And a bit of door-slamming on my part.

And then a little bit of humor, when my spouse came to find me and show me that the top was completely ruined.

It was a full day.

And I didn’t get enough sleep, last night.

But that’ll happen, now and then.

The important thing is, yesterday was a really, really good day, and we/I accomplished a helluva lot that needed to get done.

It’s Monday. Time to bring it.

Onward.

Morning fog… morning agitation

village in valley with fog and sunrise
Today I’m feeling foggy, like this village – but less pretty (Photo credit: Sebastian Unrau)

One of the most bothersome parts of TBI is the irritability that comes when I’m foggy and tired. Like today. And last night.

I have had a really long and full week. I wasn’t expecting it to be as challenging as it has been — a lot of people have been out of the office at a conference, so it’s been quiet. Kind of.

Lots of stuff has “blown up”, though. And that hasn’t been good. I’m taking it personally, when projects don’t go as planned, even though there are whole teams of people not bothering to pay attention, these days.

So, that’s been exciting. And tiring.

Meanwhile, at home, things have been wearing, as well. I don’t get a break, when I get home. It’s more work. Everything feels like work.

Of course, if I can get some extra rest, it’s fine. But that hasn’t been happening. If anything, I’ve had earlier days than usual, lately, and that’s been taking a toll, as well.

The toll is angry outbursts.

Getting more tweaked about things that don’t normally bother me.

Blowing things out of proportion.

And then feeling terrible about myself, because I couldn’t keep my cool.

So, I’ll try again today. Take a nap later.

And keep going.

Onward.

Seems strange that we don’t know more about #concussion

According to the CDC’s web page(s) on TBI and Concussion:

How big is the problem?

  • In 2013,1 about 2.8 million TBI-related emergency department (ED) visits, hospitalizations, and deaths occurred in the United States.
    • TBI contributed to the deaths of nearly 50,000 people.
    • TBI was a diagnosis in more than 282,000 hospitalizations and 2.5 million ED visits.  These consisted of TBI alone or TBI in combination with other injuries.
  • Over the span of six years (2007–2013), while rates of TBI-related ED visits increased by 47%, hospitalization rates decreased by 2.5% and death rates decreased by 5%.
  • In 2012, an estimated 329,290 children (age 19 or younger) were treated in U.S. EDs for sports and recreation-related injuries that included a diagnosis of concussion or TBI.3
    • From 2001 to 2012, the rate of ED visits for sports and recreation-related injuries with a diagnosis of concussion or TBI, alone or in combination with other injuries, more than doubled among children (age 19 or younger).3

What are the leading causes of TBI?

  • In 2013,1 falls were the leading cause of TBI. Falls accounted for 47% of all TBI-related ED visits, hospitalizations, and deaths in the United States. Falls disproportionately affect the youngest and oldest age groups:

    • More than half (54%) of TBI-related ED visits hospitalizations, and deaths among children 0 to 14 years were caused by falls.
    • Nearly 4 in 5 (79%) TBI-related ED visits, hospitalizations, and deaths in adults aged 65 and older were caused by falls.
  • Being struck by or against an object was the second leading cause of TBI, accounting for about 15% of TBI-related ED visits, hospitalizations, and deaths in the United States in 2013.

    • Over 1 in 5 (22%) TBI-related ED visits, hospitalizations, and deaths in children less than 15 years of age were caused by being struck by or against an object.
  • Among all age groups, motor vehicle crashes were the third overall leading cause of TBI-related ED visits, hospitalizations, and deaths (14%). When looking at just TBI-related deaths, motor vehicle crashes were the third leading cause (19%) in 2013.

  • Intentional self-harm was the second leading cause of TBI-related deaths (33%) in 2013.

That, to me, is a pretty big deal. And that’s not even counting the costs of concussion to all the people who sustain them, as well as the friends, family members, co-workers, and employers involved.

While other diseases, injuries, conditions, etc. have “epidemic” status and get a whole lot of attention and visibility drawn to them, concussion / TBI still lurks just under the surface. Maybe because it’s so scary for people. Maybe because it’s so invisible. Maybe because people still have this perception of TBI as being “just a clunk on the head” that’s no big deal.

Guess what — it is a big deal. And it affects your whole person.

So, maybe people really do get that. They just don’t have the ways of thinking/taking about it in a productive way.

Maybe we just aren’t properly equipped.

I’m not sure there’s ever a way to properly equip people to confront their deepest, darkest fears. But the right information goes a long way.

Also, having standards of care, getting the word out on a regular basis about how to understand and handle concussion / TBI, and not treating it like a taboo that can’t be discussed in polite company… that would help, too. Heck, if we could just discuss it, period, that would be a positive development.

Well, that’s what this blog is about. Sharing information, as well as discussing what it’s like from a personal point of view. It’s important. And it doesn’t happen that often, in a productive and pro-active way. At least, not compared to the frequency with which it happens.

It really doesn’t.

Except here, of course.

So, as always, onward…

Performance = Capability + Behavior

Owen Eastwood, lawyer for the All Blacks rugby team, who’s done culture creation programs for many organizations, uses this equation. I recently read this from James Kerr’s book “Legacy:

The way you behave, he (Eastwood) argues, will either bring out the best or worst of your capability, and
this applies to businesses and teams as well as to individuals. ‘Leaders create the right environment
for the right behaviours to occur,’ says Eastwood. ‘That’s their primary role.’

Behaviour exists in two domains, he continues: Public and Private.

‘The Public Domain’ means those areas of a player’s life when he is under team protocol –
whether at training, during a game, travelling or on promotional duty. Professionalism, physical
application and proficiency are demanded here.

‘The Private Domain’ is the one in which we spend time with ourselves and where our mindgame
plays out. This is the biggest game of all, as daily we confront our habits, limitations,
temptations and fears.

When it comes to concussion both capability and behavior are impacted. Your brain may work differently (less well than before), which impacts your ability to do different things. And your behavior can be affected, also, as you may be more emotional or impulsive than usual, or you may get angry more quickly and act out in completely new ways. It can be disorienting. And it can be demoralizing.

Especially if you’re accustomed to being a high-performance do-er.

Yeah, concussion can do a number on you.

But you have to remember — all things change. And that includes your capabilities, as well as your behavior. You may have more control over your behavior than your capabilities, in fact. Although the changes in your brain may literally keep you from behaving the way you really want to, still … there’s nevertheless an element of choice in at least some of it.

The choice to stop and take a deep breath, when you’re getting cranked up.

The choice to walk away from a fight, instead if digging in to make your point.

The choice to learn humbly from your mistakes and try again the next time.

There is always an element of choice.

And capability can follow, as a result.

Stopping and taking a deep breath can halt the abrupt surge in emotion that can throw you off and turn your thinking into a hurricane.

Avoiding those fights (or cutting them short) can keep the stress levels down — which can in turn help you keep your head cool.

And learning humbly from your mistakes can help you fine-tune your choices the next time, and improve your capabilities as you go.

Performance = capability + behavior.

Each depends on the other, and the end result is what you want — what you’re used to — what you crave.

So get to it… and get back to it.

Onward.

Getting the right information about #concussion

train tracks rounding a bend and disappearing
Who can say what lies ahead?

It never ceases to amaze me, how little is generally known about concussion / mild TBI. Either it’s dismissed, or it’s viewed with a combination of fear and horror. Just mentioning to someone that you’ve had one (or two, or — like me — 9) can seriously alter their perception of you.

I’ve had conversations with people who I thought would “get it”. But as soon as I mentioned my history of mild TBI, their manner changed from collegial to guarded. As though they were waiting for me to slip up or do something stupid.

Eh, well. Whatever. I can’t get too bent out of shape about it. After all, it’s largely not their fault. We just don’t have a lot of good information about concussion / mild TBI. Nor do we have stellar management practices. It’s either negligent, or it’s over-protective. And unless I’ve been under my rock too long (always a chance of that), I don’t believe there are widely recognized, standardized best practices for docs and patients, alike.

We’re getting there. But we’re not there yet.

That being said, I’m working on updating my series 10 Things I Wish Someone Told Me After My Concussion(s) I collected 10 posts in one place, and I also published it as an eBook, to give people more access to it. But looking at it last night, when I had some time to myself, I see I really need to both expand it, as well as create a more condensed, high-level version of it.

The point of the collection is to let people know they’re not alone – and to share with them things that really would have helped me, had I known about them sooner. When you hit your head hard enough to alter your consciousness, it can impact you heavily. It might not be obvious from the outside right away, and it may take a few hours or days or weeks (sometimes even months) for things to start to get weird, but something actually has changed inside your skull.

We need to know this. Not just from doctors when we think to consult with them. Not just from experts, who have all the domain expertise. But in the general population. That’s why I’m expanding the book into print — because I want to get it out to libraries, as well as to individuals. It’ll be on Amazon, just like the eBook is.

I’ll be updating this site, too, as I go along, adding more information to help clarify. This is important. People need to know. It can’t protect them from that first impact, but it might just help them deal with that — and possibly avoid the next impact that becomes even more likely when you’re already concussed.

Watch this space.

For this news … and more.

10 Things I Wish Someone Told Me After My Concussion(s)

Top 10 Things I Wish They'd Told Me After My Concussion(s)
Top 10 Things I Wish They’d Told Me After My Concussion(s)
Price: $2.99
Have you had a concussion? A mild TBI? If you’ve recently had a head injury, you’re not alone. Millions of Americans have a brain injury every year. Sports, falls, assaults, auto accidents, and more all contribute. To take care of yourself and get better, there’s a lot you need to know.
What can you expect? Why do you feel so weird? Why are you getting so angry? How do you take care of yourself? How long will it take for your symptoms to clear up? Will this fatigue ever end?
This “beginner’s guide to concussion” gives you an insider’s view of what it’s like, what you can expect, what you might experience, and why you feel the way you do. Written by a multiple mild TBI survivor with decades of recovery experience, “10 Things I Wish They’d Told Me After My Concussion(s)” fills in the blanks of this puzzling condition and talks about anger, fatigue, frustration, the neurological basis of your situation, and more. There is always more to learn with concussion. And this book is a place to start.

Who’s stopped by in the last month

picture of world readership from the last 30 days
Who all has stopped by in the past month

I just checked my stats from the past 30 days, and it looks like word has gotten out about this blog. Or people have been finding their way here. The breakdowns of countries are below – this is just the past 30 days, but the range of countries is pretty extensive.

world readership statistics from the last 30 days
The full list of visitors from the last 30 days