Saturday, December 15, 2012

Look Ma, no hands!

Emma's doing really well with driving her power wheelchair now that she is able to control it with head switches.  The head switches have been on loan for a couple of months and I *think* we need to give them back this month, but I'm hoping her team will see the video below and let us keep them a bit longer because Emma loves to drive her chair!  (Note:  Yes, I know she is missing a show in the video. I also know her feet are not strapped down.  There is a good reason for both, I'm just choosing not to tell it here....)

A few key things you can see in this video show just how skilled Emma is getting at driving her chair.

  • She wants to touch our car so badly that she moves her chair so she can touch the car, adjusting her driving a bit to get closer to touch it, without driving into or bumping into our car.  So cool!  
  • When she hits the lawn chair and Chris tells her to stop she pulls her head forward, which stops her motion.  
  • She doesn't have a reverse option yet and has learned to turn herself around in a circle so she can then drive forwards to areas that were previously behind her.  
  • With the boxes, too, you can see that she stops before she hits them (for the most part;  we had been playing a game of knock the boxes over before I took the video) except for when we tell her to plow the boxes over.  
  • She is getting really good at knowing when to stop and fine tuning her driving and this has all been since we've had the head switches so she's acquired these skills in about 8 weeks with only practicing on fair weather days when we can do it outside.  

The power chair Emma is using (on loan for as long as necessary from a very generous friend!) has battery and drive motor issues that causes it to pull to one side and are, apparently, expensive to fix.  That plus the need to purchase head switches resulted in the wheelchair clinic recommending we buy a whole new system for Emma because it will have a similar cost but include all the warranties.  Sold!  The challenge is she received a manual chair in March 2012 so they are trying to space out the request for the power chair to have the best chance of insurance approving it.  I plan to set up an appointment at the clinic to order one in January.  Fingers crossed insurance approves it without much fight.  Can't you just see Emma running around the neighborhood, school, and the mall in her own chair?  I can!  I really can!  And I find that idea so exciting!

And while Emma is starting to make some real gains in her communication and is demonstrating great joy and skill at using her head-controlled power chair, my heart is feeling a bit confused these days.  The change we are seeing from her is incredibly significant and makes my heart swell with hope and joy.  Each and every one of these gains has taken years to get them and are a cause for real celebration.

Yet, we have some friends that aren't so lucky.  Friends that are struggling with their children this holiday season.  Friends whose children may never gain the skill set Emma is starting to achieve.  Friends whose children once had the skill sets whose children are in a decline with very precarious health.  We say prayers for them every night.

So, it feels a bit bittersweet sometimes to share all Emma's accomplishments here knowing that some reading this blog are on a different road.  This season we are praying that those families receive a Christmas miracle of their own to celebrate.


1 Comments from readers:

Anonymous said...

Looks as though we have to beware of another driver. Emma can certainly go fast in that chair. Keep up the good work.

Luv ya,

The #1 MiMom