Lightning Bugs and Lightning Bolts

Small details can make really big differences in the lives of disabled people.

Koan -- a couple of years ago in Caroline's Cart
Koan — a couple of years ago in Caroline’s Cart

One of my favorite quotes is from Mark Twain.  When asked about the importance of word choice in the writing process he said, “The difference between the almost right word and the right word is the difference between a lightning bug and lightning bolt.”  I’m convinced that nuances, the small things, make disproportionately big differences.  I’ve found this to be true both professionally and personally.  Details are important.  In fact, many times they are what matters most.

As I’ve said before, Koan loves to get in the car or van and travel.  It’s amongst his favorite things to do.  This has shaped all our lives in some interesting ways.  There are certain words we are very careful using if Koan is within earshot: go, take, leave, store, shoes, socks Target, Hy Vee.  Koan loves going to the grocery store.  I realize that “shoes” and “socks” don’t really fit the other words, but he’s learned that if I say, “I”ll get my shoes on.”  That means I’m going somewhere (and he thinks he should, too).  Koan also has a habit of removing his socks (and losing them).  So, if someone says, “Get socks for him.”  He also very often correctly surmises that we are talking about his socks in preparation to leave.   There are other tells as well.  If I turn on the light above our hall closet, the one that holds coats and hats, Koan interprets that, often correctly more times than not, that I’m planning to leave.  If I put on a hat — either a baseball cap or stocking cap — that’s another sign that I’m going out and again it’s possible he might as well.  So, there’s reason for him to get excited.

It’s striking how fast these words and actions grab his attention.  He can be fully engaged with a toy or interacting with another person, but if he hears one of those words or sees one of the actions– he whips his head around and often will let out a shriek of joy. That’s all fine and good if he’s going with me.  But he does occasionally fall prey to false-positive interpretations.  For example, when it snows and Tiber and I go out to shovel.  Then there are just contextual mistakes where some of the keywords come up in conversation.  And, of course, there are just times when I’m leaving, but he doesn’t get to go (the most cruel circumstance of all!). Koan’s disappointment is harder and harder to manage as he is getting older and bigger.   Our Amazon Echo is a lifesaver in these situations.  Being able to quickly say, “Alexa, play ‘Wheels on the Bus’ by Bert and Ernie (Koan’s favorite version)” is a game changer.  The voice activation is really important.  Sometimes my hands are full.  Sometimes my phone is not within reach.  Being able to use my voice is super-helpful.  This is a great example of a little change, a detail, that has a really big impact.

So, going to the grocery store is a big deal.  As Koan has gotten bigger, we’ve had more an more trouble making this happen.  A couple of years ago he became too big to fit into the child seat built in the standard shopping cart.  It was not really comfortable or safe to put him in his own cart — in the main compartment.  It’s also difficult, not impossible but a lot harder, to load him into his Convaid.  Using the Conviad or even a second cart is particularly problematic if I (or Jeri) are going solo — ie… just one of us with Koan.  We were so fortunate that around the exact time he was getting too big to manage, an enterprising and brilliant person in Alabama came up with a solution — and got this to our local Target: Caroline’s Cart.  This is amazing and it makes me so happy!  Without it, we would probably only take Koan to the store once a month.  Caroline’s Cart removed a really significant barrier.  One of the reasons Koan likes going to Target so much is that just about each trip someone recognizes him and talks to him.  He’s the rock star in our family.  It seems like everyone knows Koan.  It’s really normal for people Jeri and I don’t know to approach and call Koan by name.  My larger point is that this cart makes it possible for Koan to meaningfully integrate into our larger community.  Without this detail — just two carts at our local store — Koan’s life is really different.

We are so incredibly fortunate to have such great support from the Arc. If you not already done so, please consider making a contribution to the Arc March in Koan’s name.  So much of what we get from the Arc are big things– like respite — that also make a big impact.  But, within these essential services, there are high-value nuances.  We’ve been blessed to have the same respite worker for over a year now.  Adrienne really feels like part of our family.  She’s amazing and her insights into Koan are so valuable.  This week Koan has not been all that interested in his meals.  I’ve seen this in the evening and Adrienne has noticed this each of the mornings this week.  Koan “chipmunks” his meal — he opens his mouth for more food, but has not swallowed the previous bite(s).  It’s pretty frustrating to feed him when he does this.  It takes a lot longer and it makes a mess — inevitably what he does not swallow comes out on to his hands, shirt, face, etc…  Yesterday for breakfast it was particularly bad.  He only ate about a third of his meal.  This is pretty unusual.  I talked it over with Adrienne this morning.  She suggested adding some Miralax to his breakfast because she suspected he might be constipated.  Not to go into too much detail here, but this is a  problem that most non-ambulatory people struggle with occasionally.  Jeri and I had already talked about that possibility last night, but the fact that Adrienne came to the same conclusion (and action step) without much prompting is so helpful.  It’s awesome to work with people who “get” Koan in this way.


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