Mini-Review: M in the Middle

M.

When I reviewed the book M is for Autism, I said I wanted to hear more about this girl who calls herself “M.”  I lost my copy of the book, and when I went on Amazon to buy a new one I discovered the students and their teacher had written a sequel.  I was hand-flapping excited (though I tried to tone that down when I told Mom I ordered them).

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Both books arrived yesterday, and I was so startled by M in the Middle‘s thicker size that for a moment I thought they sent the wrong book.  But no, it’s a longer novel.  I missed the colorful pages of M is for Autism, but they occasionally play with the fonts and type to help M communicate.

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This is what happens when you have autistic girls write a novel about an autistic girl.

 

I re-read M is for Autism last night to prepare for the sequel.  I was a little surprised by *just* how short it is; I think that I was so engrossed in the scenes and M’s mind when I first read it that it felt “bigger.”  I loved it just as much the second time.

I was impressed by the consistency of the character and her voice between the two books.  Our main character and narrator is now in year 8 in England (7th grade, here in the States).  She got her autism diagnosis a year ago, and her wonderful therapist has been helping her understand herself and develop strategies for dealing with her often-crippling anxiety.

I do want to caution those of you who struggle(d) with anxiety.  The authors do an incredible job of provoking empathy for their anxious narrator.  Pretty much any time M was taking deep breaths or using another calming strategy, I found myself taking deep breaths along with her.  I read the book in one day – partly because it was so good, and partly because I didn’t want to drag out my time living in her anxious mind.

We get a fuller picture of M’s life in this longer book.  She deals with INCREDIBLY frustrating adults who do pretty much the opposite of what this poor girl needs, fueling her anxiety and pushing her towards mutism.  She encounters a few people who get her, show her kindness, and help her find her voice again.  She has “friends” who turn into horrible bullies and she has friends.  She has an obsessive crush on an older boy, and wonders if she can have a “normal” future.  She tries so hard to fit in.  She tries so hard to have friends.  She tries so hard to do the right things at school.  She tries so hard to combat her anxiety.  She tries so hard to connect with her family while recognizing she can’t do the things they want her to do to show that connection.  She tries. So. Damn. Hard.

While 13-year-old me didn’t have all the same struggles and experiences, I related to a lot of what she goes through.

Again, the authors share some truly insightful thoughts through M’s words.  Here are a few I made note of as I read.

About her mother (p. 113):

She was delighted when we got the diagnosis. She was reading books and web pages and talked about us going to meetings and then she just seemed to stop.  Like she stopped believing I had autism or maybe when the reality of it began to unfold it all became too difficult.  . . .

But I’ve been carrying it around with me my whole life.  This is my reality, and does she realise how difficult that is?

About trying to “crack the friendship code” (p. 115):

And even though the truth is I love being on my own, I feel a desire to fit in and have friends.  Like it’s part of my purpose on earth.  I’m hardwired to fit in!  . . . I want to be accepted by my fellow human beings, but it really is so much easier on my own, and I retreat back to my little pink room, back to the security of my bed and blanket and the comfort of Skylar, season 5, episode 7.

When her mother suggests she write down how she feels, to let her feelings “out into the world” (p. 169-170):

Is it like letting Bella out into the back garden?  I haven’t got a back door.  I can’t just open a door to me and let my feelings out into the world.  Is that what everyone else is doing? Am I surrounded by other people’s feelings that they’ve let out??  Do I pick them up as I pass someone in town or do other people’s anger or jealousy latch on to me as I walk down a corridor?  And is that why I get so anxious?  I’ve picked up all the dumped emotions everyone else has let out into the world and I have an extra quota of feelings?

While writing this, I recalled watching the video about the Limpsfield Grange School girls (where this book was written).  I just realized that one of the plot points (involving the crush’s photos) was inspired by a real experience of a girl at that school.

I strongly recommend this pair of books – for autistic girls to feel less alone, and for people who aren’t autistic girls to stretch their empathy muscles.  It’s an emotional ride, but they both end with glimmers of realistic hope.

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Acceptance, Not Awareness

This past Friday I had my mid-year review at work, the first such meeting since I was hired full-time a few months ago. It was a much more in-depth evaluation than the little “here’s a paper with all 10’s circled on it, let me know if you have questions, sign here” I had at my last job.  My manager was very positive and complimentary, gently providing “growth areas”  rather than “weaknesses” or criticism.  My peers also provided a few positive comments for him to share with me.  In a summary section, he wrote something like, “She is different, and that’s a good thing.”  He does not yet know that I am autistic, but since I work in IT now, I’ve been able to be a little more authentically me than at past positions.

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This weekend I was continuing my way through the book Neurotribes, which is excellent.  The problem is, it jumps between stories so cool that I excitedly read them aloud to unwilling victims, to parts so heartbreaking that I have to put it down for a while.  I was reading the section on Lovaas and the early days of ABA, and researchers’ use of punishment.  It was so upsetting that I was stimming (a lateral hand-flapping movement) and engaging in self-injurious behavior (biting my hand) – two of the very behaviors that were physically punished in these early studies.

I talked to a person about this right after setting the book aside (I will use “they” as a gender-neutral singular here). I was so worked up after talking to them that I was still doing a lot of the rapid hand-shaking while I was preparing some coffee.  They then said, “You’d better get that out of your system by Monday if you want them to still think you’re ‘different in a good way.'”

That bothered me.  But I didn’t have the words to express to them why it hurt so much.  First, it was just the latest in a long line of comments like that throughout my life – those, “I hope you don’t do that in public,” or, “Are you going to shower before you go out?” or, “You don’t say that at school/work, do you?” kind of comments.  The ones that insinuate I haven’t yet learned how to behave “properly” around normal people, out in public.

Second, and this is very much related to that category of comment, I only engaged in that behavior because I felt safe to do so.  In my own home, with people I trust, I’m going to feel freer to behave in ways that are not seen as “acceptable” in other settings.  I’m going to complain about tasks I’ve been assigned at work, but I’m NOT going to have a bad attitude about them around my manager and coworkers.  I’m going to skip a shower when I’m staying in, but I’m NOT going to go to class with greasy hair.  I’m going to release extreme emotion nonverbally through self-stimulatory behaviors, but I’m NOT going to be as obviously autistic in the behaviors I select when I’m around people I don’t trust with that.

Third, they used something that was an extremely positive, affirming, and accepting comment about me to shame me for my autistic behavior.

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I was recently talking to another Aspie-girl about how hard it can be, living with neurotypicals.   We talked about how sometimes we trust someone with an explanation for our behaviors, or explain how we feel about something, and they end up using it against us later – even if it’s just what they see as a friendly teasing comment, it still hurts, and makes us less likely to trust again.

So, if you love someone on the spectrum, please recognize that often those “socially-unacceptable behaviors” you see are indications that the person feels safe with you.  Especially if you only see the behaviors in a “safe” setting, like the person’s home.  And please, if we trust you with an explanation of how we think and feel, don’t use it against us.

And for you autistic people reading. . . what advice should I give?  Be more careful whom you trust?  Don’t let your guard down and be so “autistic” around people?  No.  On my drive home today, Jars of Clay’s song “Inland” came on my shuffle.  The song I named this blog after. I was thinking about how even though another song on the album is my favorite, I was glad I got an “Inland” lyric inscribed on the ring I wear every day.  The words “you keep walking inland” are a constant reminder to me that I must press on, I must engage in community and relationships, I must keep trying.  I must keep walking inland – “where no man is an island.”  And so must you.  Don’t give up explaining, expressing yourself, and teaching.  Learn to live among people who are not like you, learn to communicate with them, and treat everyone with the respect and kindness you want yourself.   Don’t hide.  Don’t retreat.

 

It’s the only way we will gain more acceptance. 

Inland Ring

 

Rallying

A few weeks ago, I had a really long weekend.  Work that week had been stressful.  I traveled to see friends after work on Friday, but it was an emotionally draining visit.  The next day, I spent at least 8 hours at a small gathering. . . again, it was lovely to spend time with these friends, but socializing with more than one or two people is going to wear me out.  I drove home that evening, and since I had coffee to stay alert on the road, I wasn’t able to get to sleep for a while.  I was emotionally exhausted and ended up crying in bed, and the next morning I woke up with a headache (from the too-short sleep and the crying).  I couldn’t sleep in, because my family was going to a gathering, where I would again be socializing and listening to people talk about things I don’t have (wedding plans, babies).  As I stumbled around like a grumpy zombie trying to get ready to go, I was told I needed “to rally” because it was important.

 

I’m not still curled up in bed under my weighted blanket.

This is me rallying.

I put on clothes that aren’t a t-shirt and pajama pants.

This is me rallying.

I’m responding with nods, grunts, and short exasperated sentences instead of snapping at the upbeat attempts to get me to join in the chatting.

This is me rallying.

I’m allowing my picture to be taken and trying to smile.

This is me rallying.

I’m getting in the car again, even though I just traveled from the other side of the state a few hours ago.

This is me rallying.

I’m strategically isolating in the car to simultaneously recover and prepare for more socializing – hooded sweatshirt to block the sun, squishy pillow to try to sleep, noise-blocking headphones; then, when sleep fails me, escaping into an episode of a TV show streamed onto my phone.

This is me rallying.

I’m getting out of the car instead of staying in here and sobbing or sleeping.

This is me rallying.

When told, “I need you to rally,” one more time, I respond,

“This IS me rallying.”

and I walk into the house, projecting the friendly persona expected of me.

 

 

On Birthdays and Measuring Years

30. 1. 20.

We attach so much significance to our measurements of time.

I recently turned 30.
It’s been 1 year since I realized I have Asperger’s.
Jars of Clay is celebrating 20 years as a band. (Their new album is excellent, btw).

Jars 20

30. I don’t feel 30, of course. I’m not sure what 30 is supposed to feel like. Of course, life doesn’t look the way I expected it to look at 30.

One thing I wanted to write about was my birthday, and how it was an example of what I’ve learned over the past year. Here comes the Aspie problem of not knowing exactly how much back-story to give. . . to be brief, my 28th birthday was very sad and emotional because of a relationship situation. The next year, I planned to have a better birthday. I even had a party for the first time in years, complete with goodie bags!  Some of my favorite people came to visit, and the house got noisy when some family friends were in town and came by also.  But another relationship situation went down shortly after, which ended up tainting the weekend.

So this year I was back to not looking forward to my birthday.  Since the previous two were tainted by guys, I decided to not even mention that my birthday was coming up to the guy I was chatting with online.  Every time I thought about my birthday coming up, and tried to decide what I wanted to do (such as invite people over) I would just want to cry.  My very wise best friend encouraged me to “do something fun . . . like eat ice cream for breakfast, don’t do any school work, and watch HSM3 or Darren Criss.”

I took her advice.  (Well, I saved the HSM3 for the next weekend when she was coming to visit, and I had a different dessert for breakfast.)  I went to my morning work session, then relaxed at home with my parents and watched some movies with them.  Mom made delicious food.  I got a few thoughtful gifts from my family.

My bestie sent me this shirt. Link and Harry are my homeboys.

While some might see my change in behavior as “giving up” or withdrawing, I recognized it as growth in understanding and accepting myself.  Ever since I was small I have loved the *idea* of a party, but the party itself was often problematic.  I have a hard time splitting my time and attention properly when I’m with multiple people.  I have to be constantly “on” socially and concerned about how people from my different circles are getting along.  It can easily get noisy and overstimulating.  There’s the inevitable disappointments (too often I ended up crying in my room at parties) and the stress of opening gifts.  Tangent time!

I hate opening gifts.

I have theorized that this goes back to getting things like Barbie dolls as a child from people who don’t actually know me (like if I invited a classmate to a party and their mom never met me).  Talk about disappointing!  Like most people on the spectrum, I was never good at hiding my emotions and lying.  I know I’m supposed to act happy and grateful when I receive a gift, but that is SO HARD when it’s a disgusting magenta box with an ugly doll inside.  (I used to avoid the magenta toy aisle at all costs; I thought about taking a picture of one for the blog and decided it’s too awful, so I’ll skip it.)  So imagine it – being a little kid, excited to see what new toy is under the wrapping paper, but then seeing the hot pink and feeling seriously disappointed while having an audience – including someone who will feel sad if you show your disappointment, and you don’t want to make them feel sad.  It’s not fun.  And while I slowly got better at acting thankful, that trepidation still accompanies every wrapped gift and every surprise.   (Second tangent – I don’t like surprises. . . unsurprisingly, my relationship with a magician did not end well).

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So, instead of stressing about organizing a get-together that would inevitably stress me out, and thinking about all the ways my birthday could be different, I decided to honor who I am and what I actually enjoy, and give myself the gift of a relaxing day of good things.  And I got to have other good things to look forward to, like my best friend and her family coming to visit and the arrival of the not-yet-available LEGO Mini Cooper my parents wanted to give me for my birthday:

LEGOS!

This was one birthday toy that did not disappoint! My inner-child was SO HAPPY.

“You make me feel disabled. Yes, you.” by Pensive Aspie

“You make me feel disabled. Yes, you.” by Pensive Aspie

I’m typing this and I haven’t even finished reading the post – I like it that much.

 

My words can express an agreement and hide my dislike for certain things, but my body language is almost incapable.

Yep.

Even large family gatherings with people who love us can make us anxious. When you dismiss our anxiety with a wave of your hand and a roll of your eyes, you say our feelings don’t matter.  Your dismissal of my feelings increases my anxiety because I feel I have disappointed you. I feel like I cannot do anything right.

YES.

Because sensory issues play a big part in our lives, we often prefer specific foods.  Forcing us to try new foods and chastising us if we don’t proves to me that you don’t respect my boundaries.  I am an adult.  I know what I like and what I don’t.

THIS.

I finished reading it and wanted to shout, “Amen!” and show it to everyone I know.  Here’s my first step:

http://pensiveaspie.wordpress.com/2014/04/19/you-make-me-feel-disabled-yes-you/

Ode to Organizing

In the beginning, God created the heavens and the earth.  Now the earth was formless and empty. . .

And after he made the light, earth, and animals, he said, “Let us make man in our image.”

Being made in the image of God means we get a lot of his attributes, like the ability to love, and in my case, the desire to bring order out of chaos.

Babysitting a few years ago, I was sorting their cars... it was neater, but one of the kids drove through them.

Babysitting a few years ago, I was sorting their cars… it was neater, but one of the kids drove through them.

If you saw my bedroom floor or the room where I spend most of my free time at home, you would never think, “Wow, she has an OCD-style desire for order and organization.”  A few months ago I read a blog post that helped explain my seemingly-paradoxical messiness while loving order- a few quotes:

One thing about the autistic spectrum is that the brain doesn’t automatically prioritise the important things, and filter out the less important, which typically-developing brains do all the time to prevent overload.  . . .

Also, the autistic brain can have difficulty with sequencing (this is an aspect of dyspraxia, which commonly co-occurs with Aspergers). Sequencing involves both prioritising and being simultaneously aware of all the actions in the sequence while giving priority to one at any one time. This creates a sort of mental overload. It requires a good working memory – that is, the ability to keep several things in your mind at one time as you work with them – and people on the autistic spectrum often have difficulty with working memory.

Big tasks and projects always involve prioritising and sequencing. The advice people always give is ‘break it down into smaller chunks’, which makes sense in theory, but in reality involves deciding which chunks to break it down into – again, another prioritisation thing. Another aspect is that in deciding upon chunks, you often don’t know until you start on something what exactly it will require, and how much time will be needed. For me, this is a very overwhelming factor – it is about going into the unknown, and maybe getting lost there.

Some people on the autistic spectrum have a spotlessly tidy house, and diligently keep it this way. I would love a spotlessly tidy house, but I get frequently overwhelmed by ‘stuff’ in my house. I call it ‘stuff’ because most of the time I’m barely aware of it as it accumulates and creates mess. I will be doing something – and whatever I’m doing requires me to take things out. And I like to lay everything out so that I can see it – otherwise I forget it exists! I leave it out because I think I may continue doing it – and then forget about it and bring something else out. Before long, there is stuff everywhere – overwhelming stuff, and I don’t know where to start and I have forgotten where most things were kept, and perhaps where they were kept wasn’t a good place anyway and I need to find a better place, and there are some things which maybe I should throw away, but that’s a big decision, and I don’t know if I can make the correct decision.

“‘I just assumed she was lazy’” on the blog Aspects of Aspergers.

I also really appreciated her strategy of picking up ten things to take care of, rather than getting overwhelmed by the clutter and not knowing what to do with it all.

This blog post over at Musings of an Aspie was also very insightful and illuminating – “Procrastination or Executive Function Fail?

Another thing I struggle with:  “Context and non-transference of behavioral routines.”  I totally identified with this post – she basically says that if you think of something you need in the car, you’ll forget to get it when you’re in the house.  That reminds me of the study that shows that walking through doorways causes forgetting.  Yes, that was a real study, and I find it simultaneously amusing and validating.  Recently I’ve learned to set reminders on my phone for specific times, such as when I know I will be completely in the door and settled after arriving home (because, as we just discussed, if I’m reminded in the car or driveway I will forget by the time I reach the house and can do something about it!).  I got a new iPhone for Christmas and I’ve found that Siri is wonderfully handy for safely setting a reminder like this while driving.

Thanks, Siri

Thanks, Siri.

And now for today’s story.

A few times a day I go down to the basement to fill up my water bottle from the extra fridge and do other miscellaneous tasks.  Last week I reached my breaking point with the state of the shelves at the top of the stairs (icing and mustard and soup and jam all together on a shelf- chaos!).  I had organized it a long time ago, but the rest of my family doesn’t have the same compulsion to *put things in the proper place* that I do.  So I decided that Saturday morning I would tackle that pantry cupboard.  This happens every once in a while.  My mom’s fabric stash in the neglected sewing room, the children’s books on the living room shelf when I was a nanny, the spice rack, even my current client’s DVD collection – if there is a group of related objects that are in a designated area and there is no discernible pattern or rationale to their placement, I’m going to react badly.  It could be a quick  fix: “Why are those two Curious George movies not with the other 5?  I need to move that…”  It could be something I’m not allowed to tackle: “No, you can’t organize my fabric until you help with more important things around the house.”  (What on earth could be more important than sorting the fabric so all of the blues are together, and all of the flannels are in one spot. . . never mind the fact that nobody ever sees that room.  I still get a little anxious thinking about that. It was a weird experience when Mom told me I had to wait, like a psychic pain.)  Or it could be a job that takes all day.

I cleaned out the pantry shelves, organizing and tossing expired goods as I went.  I then reassessed the layout and made some practical adjustments.  When I was done, I was in the ZONE and moved on to the next cupboard.  And the next.  It was a great example of autistic inertia. . . though unexpectedly having to deal with a pantry moth infestation used up more spoons than I had expected to need for the task (inertia? spoons? read here if confused).  It was one of those times I was so focused and active that I forgot to eat and became shaky.

One topic that occurred to me while cleaning was stimming – while grossed out by the pantry moths I frequently shook my hands or rubbed them aggressively.  I’ve found that since recognizing my autism I’ve been more aware of my stims or desires to stim, and also more willing to embrace the movements.  So if I’m at home in my kitchen and really excited about how the organized cupboard looks, I’ll let myself jump up and down or flap my hands briefly.  Those are harmless and serve a purpose to my body and brain.  We see nothing wrong with an excited child jumping and clapping – when does it become unacceptable for adults?  Hey, it’s still acceptable for “big” excitements like being on a game show (Have you ever seen The Price is Right?  Those people are always clapping and jumping up and down).  So maybe it’s just NTs not understanding that sometimes little things can make us feel *that* excited.  I’ve also noticed times where I subconsciously redirect the desire to stim.  For example, in the noisy school cafeteria one day I became aware that my body had the urge to rock.  I recognized it and allowed it to be suppressed, and then noticed that my leg had immediately started bouncing.  I don’t ever recall consciously redirecting that desire to a more socially-acceptable stim, but there it was.  I’m a frequent leg-bouncer, and assumed it was restless-leg syndrome, but now I know that it’s actually a stim.

But anyway. . . I felt much better after the organizing, and my mom was thrilled.

Chaos ------> Order

Chaos                                                        —————————>                                                       Order

Happy Holidays

Holidays can be stressful and emotional times for everyone – having Asperger’s usually makes it worse.  I just experienced my first family get-together since my self-diagnosis, and the self-awareness and respecting myself really helped.

Pie

Ten years ago, when I first discovered that I was a Highly Sensitive Person, I often used “holidays at Gram’s” as one of my anecdotes to explain to people what it meant. Like this:

When I was little, we’d go to my Gram’s house for holidays.  And at some point I’d suddenly tell my parents that I wanted to go home.  Mom would say, “Okay, we’ll go in about half an hour.”  And I would feel panic and even want to cry.  I never knew why.  I often liked playing with my cousins, I always liked visiting my Gram’s, and I knew that I was being “unreasonable.”  But in those moments, I wanted to go NOW.  I’d repeat that I wanted to leave, but I couldn’t articulate that I needed to, because I didn’t understand it.  Instead I’d usually go in one of the unoccupied bedrooms and wait there.  Now I understand that I was overstimulated, and I had reached my limit – as suddenly as if a switch was flipped.

We’d walk in the door and my senses were assaulted.  Food smells, sounds, people moving around.  I would also be physically assaulted – aunts with jangly jewelry, powerful perfume, and greasy-makeup-cheeks; uncles with scratchy mustaches; and a swarm of little cousins – all trying to hug and kiss me.  I would back up; I would run away; I would squirm; I would actually punch them.  They thought it was funny.  Sometimes a relative would refrain from trying to grab me and voice that they knew I didn’t want to be hugged, but I often felt bad about that.  The thing is, I crave physical touch.  It’s one of my main “love languages.”  But like most autistic people, I only want it on my terms.

I often felt like I didn’t fit in with my cousins.  Not knowing about Asperger’s, I came up with several theories over the years, such as:
I’m older.
I live farther away.
We have nothing in common.

Those were all valid reasons why I felt different. . . but it doesn’t look like I have any aspie-relatives on that side of the family, so I faced the same social divide that I did with my non-blood peers.

At family gatherings – as well as at gatherings with our family friends – I’d frequently wander between the kids and the adults.  I’d try to interact with my peers, feel bored and/or left out, and then go hang with the adults until they started talking about boring adult stuff (like people I don’t know).  I might wander back and forth a few times or go find a quiet place to read or play my GameBoy.  I always loved it when an adult like Aunt E. would pay me some special attention and make me feel less alone.  If I was really lucky I would have a friend along; my parents were awesome about letting me take a friend (or two or more) to practically everything.  Despite my social deficits I was blessed with some really loyal, understanding friends over the years.  Holidays and other events were always easier when one of them was around.

It was a beautiful (albeit a little stressful) drive out into the woods

It was a beautiful (albeit a little stressful) drive out into the woods

So back to this year. . . we had Thanksgiving out at my pap’s hunting camp.  I asked my mom ahead of time who was planning to be there.  I had been out to the camp for Thanksgiving ten years ago, so I had memories of what to expect.  When we arrived I dutifully gave hugs and made some effort to join conversations, then sat on the couch for a bit and played a few apps on my phone (no service out there, so I was stuck with offline games- mainly a crossword puzzle app and Flow, which felt rather “stimmy” ).  I interacted when spoken to and occasionally joined back in when there was a conversation that interested me, but I didn’t push it.  I respected that I have a limited number of spoons for social interaction and didn’t make myself feel guilty for taking breaks.  I was still in the same room, after all.  I interacted a bit with my cousin’s 1-year-old and took some pictures.  And after eating our delicious dinner I sat at the table and had a good conversation catching up with a few people.    I had respected my limits, and my relatives were all social in a non-threatening way, not saying anything about me occasionally sitting quietly by myself.  At one point I thought, “I’d like to go home now,” but I didn’t bother saying anything because I knew I could last a little longer.  The switch had not yet flipped.  Success.  OLYMPUS DIGITAL CAMERA

Change

Change, you say?  My dad and I respond this way:

We quote it often.  In fact, I got this text from my dad this morning while I was at work – “We fear change. But I think you’ll like it.”

Ominous, isn’t it?

By the time I got home to the empty house I had completely forgotten about his text.  I was heating up some food for dinner, and while it cooked I opened the cupboard to retrieve a small glass for my grape juice.

HORROR. 

Those are not glasses.  Those are mugs.  They belong on the left side of the sink.  This is the right side of the sink.

Cue a short spell of hyperventilating, hand-flapping, and pacing, all while processing  – “AHHH CHANGE.  It makes sense.  That’s above the coffee makers. BUT IT’S NOT THE SAME.  The other cups are now beside the cupboard that holds Mom’s tall glasses.  It makes sense.  IT’S NOT OKAY.  It’s logical.  It’s practical. BUT IT DOESN’T LOOK RIGHT.”

To be honest I was concurrently amused at my response.  I think if I had been more specifically forewarned I wouldn’t have had quite the same reaction.  And because it’s such a practical and logical change I’ll be cool with it soon.