Kiran had his first field trip – and first ride on a school bus – on Monday.  I got to chaperone, so I got to be with him while he had his new experiences.  It was the first time he’s ever been on a wheelchair lift to get into a vehicle, and the first time he has been transported in his wheelchair in a vehicle.

In true Kiran fashion, he was very stoic at first, but he decided he likes the bus.  He was looking out the window a lot, and smiling up at his mama a lot.

The field trip was to one of our favorite places: The WDM library!  We go frequently for story times, to check out books, or to play in the kids’ area.  The preschoolers got a special story time, complete with bubbles, and we got to tour the downstairs of the library, including the back room where we got to see the book sorting machine in action! (I didn’t even know this machine existed – even *I* learned something on the preschool field trip!)

It was a great trip.  Kiran and I were both worn out (Preschool teachers are saints, and he has some really excellent ones).

Today, we got to experience another first.  One I have been hoping for but was unsure would come: Kiran had his first playdate with a friend from school.  She has been a special friend to Kiran from the beginning and is definitely one of his favorites to play with at school.  We met her and her mom at the new children’s museum space.

I feel like I am learning so much with these firsts.  I am learning more about inclusion and what that looks like.  I am learning what friendship looks like for Kiran.  I am learning that sometimes my own assumptions or fears can get in the way.  I am learning to trust people’s intentions, and trust that others, too, can value Kiran, just as he is.

This friend certainly does.  I could cry thinking about how sweet she was with him today.  She did hand-over-hand with him with instruments, showing how to play each one and giving him a turn.  She performed puppet shows for him, which he absolutely loved.  She made “sandwiches” at one point, serving Kiran last with the sentiment “Save the best for last!”  She was just attentive and helpful and sweet, and she really values Kiran.

The friendship looks different – of course it does – but it’s still friendship.

Honestly, I didn’t know what it would look like or be like, for Kiran.  But I am learning too.  I am learning from his amazing teachers, his therapists, the volunteers and workers at Courage League, his classmates…

These are firsts for me, too.  And I’m paying close attention.

Dr. Seuss has always been very wise.  One of my favorite quotes from one of my favorite books of his (Oh, the Places You’ll Go!): “So be sure when you step, Step with care and great tact and remember that Life’s a Great Balancing Act.”

Balance means Kiran is sitting next to me in my bed right now, as I type this.  His hand is on my leg, and he is playing with his body, sitting back into the pile of pillows and pulling himself back upright to sitting.  He keeps putting his ear against the side, either because it’s cool and feels good or he likes to hear the clacking of the keys.  He has already tried to eat the laptop once.  He is watching me write.

Balance means fitting in self-care, even when it means I literally have to be accountable to another human being and have to put it in my calendar, as if it’s as important as all of the things on Kiran’s calendar (And it is.  I know.  It is, but I don’t treat it like it is.)

Balance means, after a day at preschool, a meeting with his school SLP right after, two therapies at Childserve this afternoon, and a very dedicated oral dinner practice time, we came downstairs to read.  Just to read.  I didn’t bring the button with “Turn” recorded on it.  I thought about it.  We “should” be working on it.  But balance means sometimes, we’ve worked enough on our goals for one day.  Balance means sometimes, I just want to snuggle up in bed and read some of my favorite books to my favorite human.

Next up: The Knowing Book by Rebecca Kai Dotlich.  This entire book is one of my favorites, but I will leave you with what may be my most favorite part: “Run often and fast, toward or away from something.  Trust yourself to know which.  And trust yourself to know when, by the chanting clocks that hang on walls of dreams.  This is called wise and this is called brave.”

Kiran is now lying down next to me, impatiently pulling at my sleeve.  As if he is saying – enough, mama, balance.

It’s time to read.

I have been dragging my feet on writing this update post.  It’s even possible some of my avid readers (I do have some, right?  Guys….?) have been waiting to read more about this, since I posted a brief blurb on facebook over a week ago.

It all feels overwhelming and huge right now.

We finally felt heard at the Center for Disabilities and Development regarding Kiran’s communication.  Lack of, rather.  It is something we have been bringing up to our local team (who are great and are working toward solid speech goals with him) for some time now: our frustration and Kiran’s seemingly growing frustration with not being able to communicate.  He is non-verbal.  We have been attempting signs with him (somewhat inconsistently at times, I’ll admit), but he doesn’t seem to be getting anywhere with it.

I felt, though we have such a great team in place working with Kiran, like we weren’t getting anywhere quickly enough.  I didn’t understand the whole picture of the pieces that were being worked on.  And I feel like we finally got a destination – we finally have a plan, a map, work to do – something tangible.

A goal.

And it’s daunting.

The ultimate plan right now for Kiran is to see if we can get him on an assistive communication device.  There are several different options out there, and I honestly haven’t educated myself on them yet (I have to take things one step at a time sometimes).  Essentially, it will be some sort of system where Kiran could point to a picture to communicate an idea.

Some fairly newer research has been done that has identified 36 core words that can be used to communicate the most commonly used daily ideas.  Words like “More, Finished, Stop, Go, Turn”.  I used those five on purpose.  I think they may be the five we will be focusing on for the next few months before we follow up in Iowa City in July.  The plan is to focus on five of these core words using the picture associated with them.  At home, we have a basic little mack, which is a recordable button device.  Here’s what we are doing right now, at the start of this.

I put together a binder of the 36 pictures.  Kiran has the visually impaired set, so they are brightly colored on a black background.  Velcroed on top of these 36 pictures are cut-out versions of the small picture itself.  This is so I can take one picture at a time and velcro it to his button device.  I can then record the word on his device, and he can request the word by pushing his button – which will then say the word and we act on the word.

Right now, it’s a lot of repetition, and it requires a lot of patience.  It’s hard to try to incorporate it into our day at this point (granted, we have gotten this info only just over a week ago), so I have been setting aside specific periods of time to really work on it that make sense.  We use “more” during Kiran’s oral meal time, especially with puffs or veggie straws (which are only slightly more motivating than his pureed food), and we use it to request more mama singing (which is maybe the most motivating thing there is – for him).  We use “turn” when we are reading books, to request to turn to the next page.  We use “go” to request making a toy do something.

It feels good, to have a plan and a goal and work to focus on with communication.  I won’t lie.  It’s hard.  It’s hard to be patient.  It’s hard to have to be so repetitive.  It’s hard not knowing how much he gets, how much he will grasp, what he can learn.

But a very wise former member of Kiran’s team told me something I have never ever forgotten: “I always assume competence.”  So I meet Kiran where he is, and I work as if he can get to where we hope to go.  I think he can.  He continues to get somewhere, and he will show me the path.