Lucas Camilo

Big news: Lucas drove himself around our house yesterday!  It was a strange moment – at once monumental and anti-climactic.

Perhaps we should give a little background.  For families of kids who don’t walk, the first time your kid drives around in a power wheelchair is the semi-equivalent to your child’s “first steps.”  It’s something that marks the beginning of a radically different orientation to the world: the ability to go and check things out, to choose where and when and how fast you get there.  Like “first steps,” it’s something you know is coming, that other families (or in our case, therapists) talk it up for months before the occasion.

But, unlike the magical “first steps” that just happen, the first drive is an extremely planned and facilitated undertaking – usually under the supervision of multiple therapists and professionals, often in an institution that acts as wheelchair vendor.  For us it’s been a years-long process that included moving into a wheelchair accessible home, researching the market to understand what chairs might work for Lucas, finding the professionals that can help us fit Lucas to a chair, working with our insurance company to ensure that it will be covered, looking for a wheelchair accessible van, etc, etc.

Three weeks ago we had our first try when a vendor brought a power chair to the house for Lucas to try.  Like many things he encounters for the first time, Lucas absolutely hated it.  He did fine sitting in the chair when it was turned off, but the minute we tried to move it he threw a fit.  We sighed and imagined we were in for a summer of slowly, slowly acclimating Lucas to power chairs so that maybe by August or September he’d be willing to try driving.

The vendor called last week to say he’d found a loaner chair for us.  We planned a time when we both could be here to learn how to use it so that, when Lucas was ready, we’d be able to help him try.   Kevin came with a scrappy looking chair — a kid-sized seat literally strapped to a giant adult-sized base.  It looks funny and awkward, but we figured we’d put Lucas in it just long enough to measure where to put the controls so he’d be able to reach them.

We’ve found that calling something the “Special Lucas —” makes it more appealing (the hammock outside our house is the “Special Lucas Swing,” the newest stationary seating devise is the “Special Lucas Chair”, etc.) so we told him he was going to sit up in the “Special Lucas Car.”  He was not immediately sold, but he repeated slowly, “special… Lucas… car.”

And, miracle of miracles, when he got up in the chair this time, Lucas liked it.  He smiled and recited his favorite book while Kevin adjusted the joystick.  Then – surprise again! – he touched the joystick (at this point the power was still off).  When all the adjustments were made, we figured we’d push our luck.  We turned the chair on and let Lucas touch the controls again.  The chair gave a small lurch, and Lucas was unfazed.  He hit it again, and another small lurch.  And then he said “hummingbird!”

So we helped him drive into the kitchen to look out at the hummingbird feeder.  Then we suggested going outside (since it took just 20 seconds of indoor driving to put the first dent in the wall), and we all went through the door, over the ramp, and ended up playing stop-and-go on the sidewalk.  Lucas did great — he was pretty clumsy, but so were we trying to figure out how to steer with a hyper-sensitive control system.

There we were on a beautiful afternoon, standing in front of Lucas calling “come to Daddy!”  He tried, slowly motoring forward and diagonally and then around in a tight circle.  And before we could revel in the glory of it all, Lucas said he was done.  We helped him drive back inside, took him out of the chair, and turned it over to Kevin for a few minor adjustments.  And then it was time for dinner, and Lucas urgently needed to get back to his current favorite book.