Saturday, June 21, 2014

Noah's Power Wheels

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Noah waiting to see his power wheelchair
Even though studies have proven the importance of power mobility for toddlers and young children outlining benefits in social-emotional, cognitive and spatial perception associated with power mobility, some therapists still haven't gotten on board.   We spent five appointments out of a scheduled six trying to prove to a therapist that Noah deserved at a chance to drive a power wheelchair.   As I sit here writing this I'm still shaking my head at the fact that Noah even needed to prove himself.  What should have occurred is simply an assessment of how he'd best access and operate a power wheelchair.  But at the end of the fifth appointment it was clear that the therapist decided to road block Noah intentionally from being approved for a power wheelchair by refusing to recommend he was skilled enough to drive.   She was mad that Noah was acting age appropriate and didn't want to stop every time she asked him to.  Who would want to stop when you just realized you could make yourself move independently?  So, on the fifth appointment we were told not to bother coming to the next one as she had made up her mind.  She wasn't going to recommend Noah have a power wheelchair.  Her comments were rather rude, curt and very unprofessional.  It left me feeling like she had a personal grudge against Noah.   All of it lit a fierce fire within me, along with some maddening tears.  But once I picked myself and my heart up off the ground, I made it my mission to seek out another opinion and continue to pursue a power wheelchair in which I knew Noah could drive.

It cost us a private independent evaluation out of pocket.  But in just one evaluation appointment we accomplished more than we did at the previous five appointments.   Which makes you feel like they were simply milking Medicaid funding.   Finally, a therapist evaluated Noah who understood the research backing the benefits of early mobility for children.   A recommendation was given, paperwork submitted and then the Medicaid approval waiting game. 

I fully expected to have to challenge and appeal some accessories for the power wheelchair, like the stand attachment for Noah's Tobii eye gaze device, or the parental remote control that disables Noah from driving when we want to take over.  But much to my surprise Medicaid didn't deal me any fits.   It was ordered and delivered to be customized for Noah a two days ago. 

The appointment was really exciting.  We had waited over a year for this day to finally arrive after all that it took to find another way to get someone to believe in Noah.  His custom Aspen seat will be transferred back and forth from his Koala Permobil Power Wheelchair and his Zippie base.   His headrest was adapted with a head switch on the right hand side which allows Noah to stop and go with his cheek.   And he turns left and right by using each of his legs.  At first I wasn't really sure about the head switch.  We played around with it realizing that if we put it on Noah's cheek instead of his head that he didn't have to turn his head to go and stop but merely just put his cheek to the switch and still be able to look in the direction he was traveling in. 

Noah's power wheelchair
He got the hang of it fast.  Faster than I even expected him to.  He figured out how to do circles going left and right almost immediately.  And then we took him out to the parking lot and set him free!  There was Noah, with our supervision driving!  It was a pretty amazing moment.  I knew he could do it.  I just wish I didn't have to fight so hard for others to believe in him and that it hadn't taken me so long to find a way to give him this opportunity.   Part of me would just love to send a video and a picture to the therapist who refused to recommend a power wheelchair for Noah reminding her to believe in all her clients and to kind of say yes I found a way around you denying my child something he needed and deserved to promote his independence and personal growth.   But in the end, you can't convince people that what they are doing is wrong.  They have to come to that conclusion all by themselves.
Noah working on left and right turns
My future is so bright that I need shades!

And this is about Noah's victory, not how hurt I was by what a therapist said or did.  Noah is a soul that goes about his success rather quietly.  He has been proving all the naysayers wrong since the moment he was born.   And he'll never have to worry I will always believe in him.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.