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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.
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| 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.
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| Noah working on left and right turns |
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| 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.
Love,
Noah's Miracle by
Stacy Warden is licensed under a
Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
