At Permobil, we love seeing our end users find success with our mobility products. With the Explorer Mini, recently named one of TIME’s 100 Best Inventions of 2021, Clive has been able to explore his surroundings and interact with the world around him. Jennith Bernstein had the pleasure to interview Kelly, Clive’s mom, and ask her about their experience with the Explorer Mini.
Meet Clive
Clive is a 2-year-old who was diagnosed with Congenital Muscular Dystrophy at 8 months of age. He uses a variety of wheeled mobility solutions depending on his tasks and environment. He started using the Permobil Explorer Mini at 18 months. Clive is often described as full of life and everyone loves him.
A parent’s experience with the Explorer Mini
Jennith: You mentioned that you had a good understanding that Clive would need wheeled mobility in the future. Can you share with us a little bit about what those initial discussions were like when you talked to his therapy team about recommending equipment?
Kelly: Clive’s form of Muscular Dystrophy is congenital and on the more severe end. There is potential that at some point he could have the ability to crawl or walk someday, the likelihood of that was pretty minimal. When we had our first diagnosis day with our neurologist, he was stern with me about never saying never to the possibility of walking. I did see a 2-year-old driving around at the clinic, so the second the neurologist said a 2-year-old could use a a power mobility device, that is what I focused on getting for Clive. We had grief for the diagnosis, but we didn’t really grieve the wheelchair.
We started the conversation right away that we wanted power mobility for Clive. Once we got into conversations with the rehabilitation team, the focus tended to be on the an adaptive stroller. In our experience the conversations generally tend to lean towards us moving him around and not necessarily mobility for him to move himself around in the 1-3 year-old age range. Parents who were in similar experiences to ours told us not to take the stroller because it might lead to trouble with funding for a power wheelchair.
I knew we were going to have to be the “squeaky wheel” in pushing back and advocating for Clive.
Jennith: Your therapy team was fortunate to have you as a mom advocating for Clive, because it’s common for clinicians and providers to start with more independent wheeled mobility around 2 or 3 years old.
From what you share publicly on your Instagram account, Clive is an inquisitive, bright little guy who is seeking out learning his environment. What was it like the first time Clive tried the Explorer Mini?
Kelly: I actually saw an ad on Facebook for the Explorer Mini saying it was coming soon, but I figured by the time it came to market Clive would be too old for the device. I put it out of my mind. We knew his first full-sized power wheelchair was going to be the Koala, so we started the process of getting a trial for the Koala. Our rep brought the Koala and unexpectedly also brought the Explorer Mini as well. His reasoning was that going into a power wheelchair was a big jump and that putting Clive in the Explorer Mini for a day or two could help that transition. Of course, we did not listen to that advice and put Clive straight into the Koala. It didn’t go well. He didn’t enjoy it and wasn’t really moving in it. We put Clive in the Explorer Mini thinking he would have a similar experience, but as my husband and I were talking, we looked over and Clive was already starting to drive.
The Explorer Mini looks just like a toy, but it’s really well built, and I think Clive feels more comfortable in the Explorer Mini. The midline joystick really made him more comfortable in the Explorer Mini. We got the Explorer Mini on a Thursday and by Friday morning we had called our rep to put in an order for the Explorer Mini because we knew we wanted the device for Clive.
Jennith: I love that you knew he needed that device. There are some situations where not everyone is able to do that, but you made it happen for Clive.
Clive has a Firefly Scoot, a manual chair, and a standing frame. He really has great access to a lot of devices. Where do you see the Explorer Mini fitting in among all of those devices?
Kelly: For Clive specifically, he goes to daycare full-time. He’s in a mainstream daycare, and our goal is for him to be able to use it at daycare someday. For now, we use it [the Explorer Mini] supplementally during the week. The second we bring him down in the morning, Clive is pointing at it saying, “Go, go.” We’ll put him in there while we make breakfast. We like to put him in the Explorer Mini when he comes home from daycare, because even though he’s very good in his manual wheelchair, he is just so tired at the end of the day.
We can’t always put him in the standing frame or any other mobility device where he needs to exert a lot of effort and that’s where the Explorer Mini comes in. It keeps him entertained. We cook dinner and he drives around in circles. He plays with the dogs. It allows him to have independent play where he isn’t just sitting on the floor that has been a huge game changer for us.
Check back next week as we continue our interview with Kelly on her family's experience with the Explorer Mini. Interested in more information about power mobility for infants & toddlers? Click here to sign up for our upcoming webinar Announcing "A Guideline for Introducing Powered Mobility to Infants and Toddlers".
Jennith Bernstein, PT, DPT, ATP/SMS
Regional Clinical Education Manager
Jennith Bernstein received her Masters in Physical Therapy at North Georgia College & State University and returned to complete her transitional DPT at University of Texas Medical Branch in 2014. While at Shepherd Center, Jennith, initiated a “Seating Champion” program to improve the inpatient and day program clinicians understanding of complex seating, pressure management and skin protection as well as research reviews, advanced programming and adjustments. She was also part of a center wide multidisciplinary focus group for reduction of hospital acquired skin breakdown. Jennith has served as a volunteer teacher at the Universidad Mariano Galvez in Guatemala, instructing spinal cord injury curriculum as well as seating and mobility. Jennith has presented at national conferences such as RESNA, ISS, and the APTA NEXT conference. Jennith has been a practicing PT for 12 years and spent the last 10 years at a model SCI center (Shepherd Center) in Atlanta, Georgia. Jennith joined Permobil as the Clinical Education Manager for the Central Region in 2016.