Small Victories

A couple of weeks ago, I broke Koan’s Convaid — the stroller/wheelchair that we use to move him.  I was taking him on a walk.  We headed down Kirkwood Boulevard to have a look at the new roundabout that’s being built in front of Prairie Point.  Koan loves to walk through the Prairie campus, too.  He gets so excited to see his school, Prairie Ridge, and he also loves to flirt and charm other walkers we see when we are out.  The sidewalk near the roundabout is closed, but Koan also likes to go offroading in the grass, too.  He thinks the bumps and jostles are fun.  So, we spent some time examining the progress on the roundabout.  We then started to cut across the grass to hit the Prairie perimeter road.  The Convaid is kind of hard to push in the grass, but Koan was having a great time.  Just before the road, there’s a shallow drainage ditch.  We needed to through it to get up onto the paved surface.  The ditch was dry.  I accelerated going down into the ditch anticipating the greater resistance going up the little hill to get out the other side.  Koan was giggling at the faster speed.  But, I didn’t see a rut hidden in the long grass at the bottom of the ditch.  The front wheels of the Convaid locked into the rut and stopped us both for just a second.  The momentum switch toppled the Convaid over forward and sent me sprawling over the top.  It was just like getting thrown off a bike over the handlebars after a sudden stop.

Luckily, everyone was fine.  Koan was a little upset, but the Convaid had taken all of the impacts for him, and he was untouched.  Unfortunately, however, the right footrest was snapped in two.  Since it was Sunday, I had to wait to call JVA Mobility to get a repair started until Monday.  So, I did what any red-blooded American man would do in the meantime — I used duct tape to mend the broken footrest.

It took a few days to get the new part here.  But, the folks at JVA are so awesome.  Kevin, the mobility tech, made a house call yesterday afternoon to remove the broken piece and install the new part.  Kevin was sitting on the floor of our entryway doing this work.   Koan was in our great room.  But, he heard the doorbell as well as me talking to someone.  So, he decided to scoot over to us.  Pretty soon, I’m standing over Kevin watching him work and Koan is right there inspecting the situation, too.  It was really cute and Kevin was very, very patient and kind.  He and Koan were having a conversation about the process.  However, at one point, Kevin dropped an allen wrench on the floor.  Metallic sounds of this type can upset Koan as he has some sensitivity to these types of sounds. He began to whimper and cry.

Luckily, Koan’s room is right off our entry way.  It’s not really a bedroom in our floorplan; it was my office.  But, that was the only space we had on the main level of our home that would work for Koan’s bedroom. Koan is way too heavy now to carry up or down stairs multiple times a day.   So, as he began to get upset, I walked a few feet into his room and began to play with one of his toys — a workbench that has big colorful buttons that light up and play music.  As I hoped, Koan heard the toy and scooted into his room to play with it.  He was so engaged with the toy that he quickly forgot the upsetting sound.  But, what was really cool was how he was playing.  He was so intentional with his play this time.  Koan still has pretty poor gross motor skills — a lot of batting and swiping with his hands and arms.  But, as I watched him interact with the toy, he was purposefully pushing buttons to play music and hitting spinners to hear them spin.  At one point, he tipped the toy over. In the past, he would have lost interest and moved on to something else — usually, he would look for a person to charm.  But, yesterday, he reached out and righted the toy and stood it back up and continued his play. 

I realize that this little story seems really normal.  For most kids it would be a profoundly simple parenting technique (misdirection/distraction) and interaction.  But, this was a big deal for Koan.  Up until very recently, Koan has not really cared for toys.  He might play with them if they were put right in front of him, but he would never seek them out.  In fact, this was a huge obstacle with our private physical and occupational therapy sessions.  Koan has always been motivated by people, not things.  So, at our therapy appointments, all of us continually struggled to get him to do anything.  He would almost never do any structured activity — walking, facilitated crawling, etc… to get to a toy.  He would smile and flirt with the therapist, but he could do that without moving.  It was maddening!  There seemed to be no way to motivate the kid.

Jeri and I have been really excited and pleased to see over the last few weeks.  We’ve seen Koan seeking out toys.  We had a box of toys around for years that have never really been used.  We had stopped buying new toys because he was so indifferent to them.  But, starting this summer he will actually scoot to his room and get toys out of his toybox to play with them. The fact that I was finally able to use a toy as a distractor — one that he would move to under his own power in order to reach — is a seismic shift.   My hope is that we will now be able to motivate him with objects and his world will open dramatically.  This may be the pebble that starts the avalanche.   If nothing else, it shows growth and progress.  And, that gives us hope!

I was thinking about writing this post as I laid in bed last night waiting for sleep. I thought the paragraph above would be a good place to end.   However,  around 3:30ish AM I awoke to hear the “ABC Song” playing on the baby monitor we use to listen to Koan at night.  I then heard the distinct sound of him hitting the buttons on the same workbench toy I used earlier in the afternoon to distract him.  Needless to say, I was a little less excited about his play this time.  So, I got up and went to his room.  There he was — sitting in the middle of the room playing.  We had a brief conversation about the hour; I started his lullaby owl and tucked him back into bed.  I came awake again at 5:30 to the same sounds, this time he was singing along.  Jeri and I let him play until six — normal wake up time.  This new interest in toys IS great, but I’m wondering how much sleep I’m going to get now — the concept of mixed blessing comes to mind.  But, that’s a trade I’d make every time for him.  

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