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Thursday, April 26, 2012

Driving Lessons - 4 year old style!

Navigating the world of power mobility for Emma is a bit of a puzzle to me.  I'm not sure why it feels so complicated for us since it seems like it comes together for other people much easier, but we are plowing forward with our complicated journey of power mobility.

Our main challenges:
  • Emma's school PT is not skilled in power mobility so we are working on it during sessions at a satellite campus for the local children's hospital.
  • Emma is lucky to have a powerchair to use thanks to a generous friend who passed it on to us.  It fits her great but we are looking to explore alternative driving options outside of the joystick.  Since Emma didn't purchase the chair there isn't any medical company really supporting this effort.
  • Her private PT asked the main campus hospital and the durable medical equipment (DME) company to ask about switches for the powerchair.  The local hospital can help us purchase some but don't have any to loan out.  We would like to test out options to see what we should purchase.  The DME company is not getting back to her on it.  I asked the DME and it seems they likely don't have loaner items for us to test out before we order.  So Emma is still using the joystick while we figure out a better way for her to learn to drive.
  • We don't have an easy way to transport the powerchair, so for now we are leaving it at the satellite campus in a special closet and Emma uses it during her 2 sessions/week.  That is working ok for now but we eventually plan to move it home once we get some switches to help her drive.
When Emma first stared learning to drive the powerchair she didn't hold onto the joystick for long periods and when she did hold on she went around in circles because her arm tone kicked in and pulled her arm toward her body (see this post for an early video of Emma in her powerchair).  Emma loved going around in circles!  But that will not give her independent mobility so we removed the joystick from the chair arm, adjusted one driving program to exclude reverse, and mounted it with velcro to a tray and placed it in the center of Emma's lap.  

This has worked out well.  She is now able to hold onto the joystick for extended periods while going relatively straight.  At first she would only go for about 10 feet but now she can drive it for about 200 feet.  Quite an accomplishment!  Here are some videos of her driving her chair down a very long hallway last week.  




Things we'd like to try to help Emma drive and steer the chair better:
  1. A head switch behind her head that will allow her to move forward when pushed and will stop when she brings her head forward.  Her head control has really improved with her new manual wheelchair and we both think that she has enough control to use her head in this fashion.  AWESOME!
  2. A switch for left and a switch for right that she can activate with her hand.  That way we will start with forward, left, and right to teach her how to drive.  As she gets better we could explore more freedom of motion - perhaps with a joystick that includes a guide or a different handle for Emma to get a better fit for her motor skills.
So how are we going to make this happen?  One thing I'm going to explore is making an appointment at the wheelchair clinic Emma uses to try out the different options.  The wheelchair person there knows Emma, has some switches on powerchairs available, and I totally trust her recommendations.  Ideally, we'll get Emma in the clinic for a few hours to test out the options and then move forward on either borrowing or buying the best fit! 

The other thing that is happening is I plan to take Emma to the Abilities Expo next week and talk with various switch/power mobility vendors to see what we can do.  Having so many vendors under one roof will be the ideal opportunity to help us move forward on getting Emma what she needs to continue on her journey to power mobility.  

If anyone has any suggestions that might help us, please comment below!  Thanks!

2 Comments from readers:

tytysmom said...

Way to go Emma!! and Way to go Mom for getting started with powered mobility now.

Can I start with a quick ouch moment? I totally 'get' the need to keep Emma safe and the intent of the therapist saying the chair would be turned off. My comparison though is learning to drive should be viewed just as learning to walk is. When a child begins to take steps we don't force them to sit down when they fall or bump it to something. We just continue to Praise, praise, praise. If I had a penny for everytime I heard someone not versed in alternate access tell my girl to "drive straight" well, let's just say...

Okay, thanks for letting me get that out. My daughter, Tyra, began power mobility use much later than your sweet Emma but had similar needs. We used the head array system through Adaptive Switch Labs and were incredibly fortunate to consult with Karen Kangas who is an OT with expertise in the field of alternate access for power mobility.

The head array allows for all operations to be controlled through head movements and also allows for some features to be turned off until the user is ready or until the environment is right. Tyra also relied on Aug Comm to speak. I've seen that Emma uses her hands to talk with her devices which could perhaps conflict with hands for right/left. How will she then walk & talk ?

I'm not sure how prominent Emma's AT&R reflex still is but I know for us the idea of keeping one's head up & straight with a frontward extended arm wasn't going to happen.

My girl was also a 'nosey' one. The head array allowed her to "go where she was looking" instead of the opposite.

I'm not sure if you are familiar with the HMS school in Philadelphia. They do incredible work with their students in the area of alternate access to power mobility. I'm not sure if they might be a resource to you as well.

I'm pretty passionate about this subject - in case you couldn't tell. If I can be of any help in connecting you to some folks please don't hesitate to contact me.

Hetha said...

She looks like she's LOVING it! She's such a pistol, it comes through even in videos where you don't see her facial expression as much. Lots of personality in that cute little body.

I'm so in awe of how much you know and do, how much you've learned and grown and what an amazing person and mother you are. I'm proud to know you.