Summer 2015: Max's 2nd birthday. We reached out to friends and family to help us get Max a power wheelchair which would enable him to drive himself. At the time, we had completely spec'ed out an order for a Permobil M300 (midwheel drive). We thought the paperwork was all submitted, but to our great surprise, it turned out we still needed a few more signatures before applying to insurance. One of those signatures was from Max's physical medicine doctor, who surprised us further when she said that she wasn't ready to sign off on it yet. She had two concerns: (1) that insurance would deny because Max was too young to safely operate a powerchair and (2) that Max would be better off with a different model than the one we were applying for.
Disappointed, we set about gathering more evidence to respond to issue #1. We had already done several trials where therapists came to our home with a special motorized platform that Max could "drive" while secured in his custom seat. It took a lot of coordination to schedule these appointments, and Max didn't really have a way to practice beforehand. We found that the video clips from these trials might be less than convincing to someone worried about safety. Furthermore, it takes a lot of learning to find a control method that works. We were worried that Max might be unfairly penalized for poor performance due to controls that weren't well-suited to his abilities (e.g. joysticks, whereas Max does better with a switch) or age-level (imagine a single switch with a complex timing synchronization requirement, like "when the arrow on the screen points right, click the switch to go right").
We set about trying to build something that would let Max practice at home. A month later, we had a prototype for controlling a power wheelchair: two switches to go three directions (right to go right, left to go left, both at the same time to go forward).
We started asking around the SMA community. At first, it seemed that very few kids with a diagnosis of SMA type 1 were being recommended to get a Permobil K450. This increased our skepticism. Finally we found one family whose daughter had a K450. Their glowing review of the chair really helped to change our viewpoint. We decided to see for ourselves and scheduled the equipment company bring the chair out to our home to try it in various positions.
On September 15, we got the amazing news (via a letter from our health insurance) that Max's powerchair had been pre-authorized for purchase. The order was placed, and delivery was scheduled for mid-October.
The chair was delivered pre-adjusted for Max. However, there were still plenty of tweaks that needed to be made. The biggest task by far, though, was fitting all of Max's machines onto the chair. Amazingly, it only took one late night -- plus a few therapist and technician followups to "tighten up the screws" -- to get all the machines mounted onto the chair in a way that was fit for travel and convenient for caregivers. (This was no doubt due to the many lessons learned and accessories acquired for Max's Zippie Voyage stroller, his Permobil C300, and his "dune buggy" beach wagon!)
It's hard to put into words how amazing our first outing with the Permobil K450 was. We took Max to the birthday party of one of his friends. At previous birthday parties, we tended to pick a spot where Max could see all the action and settle there (because his stroller was heavy to push around and also kept him high off the ground). This time was different. With just a tap of the joystick, we were able to move Max right up into the action. It felt so empowering to us as parents to be able to lower him down to the same level as his friends. He sat next to the kids picnic table while they all ate brunch, and then he rode over to the sandbox where some other friends were playing.
At the end of the party, the kids ran to play in a pile of leaves. "Do you want to play in the leaves?" we asked Max. When he indicated yes excitedly, we drove his K450 straight for the leaf pile. One of the kids threw some leaves at Max, and he loved it, so then all his friends started throwing leaves up in the air around Max, while he just laughed and laughed. When we finally had to go, Max cried; he didn't want the fun to end. Later that day, he couldn't stop talking about playing with his friends in the leaves and his new chair.
Thank you so much to everyone who pitched in to help us make this possible to Max. Major thanks to Max's therapists who made numerous visits to ensure that everything was the way it needed to be. And a heartfelt thanks to the team at NuMotion, whose dedication to doing everything necessary to get Max his chair (and patience with our weekly email ping, much like a parent listening to their child ask over and over: "Are we there yet?") all came out justified when the chair was approved by our insurance on the first try.
To other families of children with special needs working their way through the arduous process of ordering and getting insurance approval for a power wheelchair: we hope our story is helpful. If you have any questions, please don't hesitate to contact us through this website. We especially want caregivers of trached and vented kids with degenerative neuromuscular diagnoses to know that the K450 can be an ideal platform for "on the go" living when your child's life includes an array of medical machines.
But don't take our word for it. Without further ado, here is the final product: Max's Permobil K450, "fully loaded."
Bonus: we got the K450 just in time to incorporate it (and its movable tray) into Max's Halloween costume. Presenting...the Amazing Max-stro!