By now we can all agree that “crazy” just doesn’t quite fully describe this year, 2020. We’ve had our share of nutty madness, which lead me to thinking about creativity and outlets for it. Since slowing down productions and orders, as well as taking a leave of absence from social media (Facebook and its products), I’ve had more time to think about what is really important in life, and what I really want to create, who I want to create for. My daughter’s medical condition has affected my life considerably. She needs constant monitoring and with a shortage of skilled nursing, even before COVID, means I do not get much sleep. She does not eat anything by mouth. She has very little control over her head, trunk and limbs. Her medical appointments, therapies and schooling peppers my day. There isn’t much left within 24 hours for creating.

Luckily, I’ve been able to do some work with help from a 3D printer. I’ve been able to draw it up while my kid sleeps and send it to print with minimal intervention. That has proven more helpful than the addition of the CNC from the previous year. On a side note, the CNC was put into good use earlier in the year to make intubation shielding boxes that we distributed to local hospitals through physician friends.

The CNC was also instrumental in the creation of a Tandem Power Chair. A charity had given my daughter a ride on car that she could press a button to GO. It had a bluetooth remote to let a caretaker to do the steering. Unfortunately, my daughter hated riding in it. The movements were sudden and the noise from the electric motor was loud and alarming. When her rehab doctor suggested that we needed to start looking into independent mobility, I panicked a little - wondering how in the world we could possibly get her into a motorized wheelchair. One day I had an epiphany. Maybe my younger daughter would tolerate it a bit more if her sister could ride with her, maybe even hold each other’s hands. What if my older daughter could drive it, and show her how to drive it? What if I could source really quiet brushless direct current motors?

And thus, the Tandem Power Chair was born. My daughters were hesitant at first but once they tried it my younger daughter had a huge smile on her face. It was a huge relief for me; and surprising how quickly she grew accustomed to it. She didn’t love her adaptive seat though (I didn’t make that)… she looks more supported in that (at the time) than any other seat. Now that we know she can tolerate a power chair, we need to teach her how to drive one for real. Her varying muscle tone and cerebral palsy movements make operating joysticks difficult.

In the mean time, with COVID, our extended family moved in with us so our kids can play together. It was great while it lasted; and gave me the idea that perhaps if my daughter could “chase” after her older relatives, maybe she would have more motivation to work on using the joystick.

I made her a single user power chair that is height adjustable, enough to see and reach the kitchen counter, and tilt adjustable to help caretakers put her into her new seat — a seating orthosis that is strapped onto the platform.

She has happily taken rides in it but working the joystick is still problematic. I would cup my hand over hers and help her operate it. It can go on grass so when there’s enough space, like in our backyard, she loves going round and round in circles by herself.

My Younger Daughter in her manual chair, seating orthosis, and communication buttons

One of my daughter’s therapies is working on augmentative and alternative communication. To start with, she would need to learn to press a button with the least amount of movement. She would need to be as consistent as possible. It is easy for most people; not for my daughter though. This button controls a device (an iPad for now) to communicate with us. This button can also help her interact with adapted devices such as toys or even a power chair; however a power chair would need 3 buttons for forward, left and right.

So now, I need to bridge this gap… adapting our home-made power chair, have her practice, so when she gets a real power chair she can operate it.

2020 Update