My love-hate relationship with wheelchairs
And here again is Karen, Aidan’s PT, to discuss our decision in getting his power wheelchair. It was complicated but there’s lots of helpful information here. Enjoy and stay tuned for wednesday when I tell my side of the story.
I lose sleep over wheelchairs. Truly a love-hate relationship.
It’s one of my hardest yet best experiences as a pediatric PT.
Leading a child and family through the decision-making process for assistive/adaptive equipment is daunting to me and to families. No matter the age of the child or the point in their path, deciding to obtain a wheelchair can be a complex process, fraught with emotional overlays, practical implications, and funding limitations.
For some kids with disabilities, for the early phases of positioning (think eating, playing, transportation) and mobility (how parents and children can go from place to place) years can often be accommodated by using “typical” infant-toddler car seats, infant high chairs, and strollers with creative adaptations. They may use them more and for longer periods, but eventually they will outgrow in length or weight or amount of support provided. If a positioning or mobility/transportation system is still needed, we step into the world of assistive or adaptive equipment. And for some families, that is a hard step to conquer.
My goal as a pediatric physical therapist is to get children with disabilities upright and moving to explore and learn as soon as I can. Think about it – babies start rolling at 4-6 months, creeping around 9 months, and walking at around a year of age. They explore their environment and learn about textures, distances, toys of their own choosing, finding people they want to play with, and more. Independent exploration leads to learning. I want this opportunity for all kids, especially those who experience a neuromuscular developmental issue – they need more opportunities to explore, play, practice, and learn than most. So when I see an infant or toddler or school-aged child who can’t position or move themselves, I think, “How can we help?” Oftentimes, it’s via assistive/adaptive equipment while we work in PT on gaining the strength, motions, and balance for the motor skills for movement, which may take longer.
“Fun is key here—it unlocks brain development and exploratory drive for the child, and ignites active, engaged play from adults and peers,” Dr. James C. (Cole) Galloway, PT, PhD
But if we obtain a wheelchair, aren’t we giving up on the goal of walking? Won’t it make him/her lazy?
In a word, NO!
Numerous studies have shown that by providing a child with any form of mobility enhances their development of cognitive skills such as language, problem-solving, motor and spatial planning, social interactions, and more. Assisting them to move motivates them toward more independence, which motivates them to move in other ways such as walking. Time and time again, I have seen children who had no means of moving themselves get a wheelchair, learn to move it in all their environments, and also work in PT towards the goal of walking. I have never met a “lazy” child. But I have met many children who want to move and explore, but can’t because of their motor impairments; I have seen them develop a “learned helplessness” where they don’t expect to be able to move or be independent, so they stop trying and wait for others to move them. Earlier access to mobility is best for development. Cognitive skills soar. Hands down, no contest.
The challenge is always the decision of what type of mobility to give a child – passive stroller system versus manual wheelchair versus power mobility. This is where I start to lose sleep….Each system has its own pros/cons and is perceived differently by parents and peers.
Strollers: common (typical) infant/toddler system but is made in larger, more durable, sizes for children with special needs. Lightweight, foldable, easy for parents to load in and out of their vehicles quickly. Passive – the child gets pushed by an adult from place to place with no opportunity to move themselves. And, usually, the positioning is less than ideal which means less comfortable for the child (who may be in one for hours each day) and the tendency to feed into any secondary impairments that may be developing such as spinal curves, hip malformation, and more. For the child/family that mainly needs something to enter or exit places or to quickly run through a store, this can be ideal.
Manual wheelchairs: larger, heavier, less easy to fold for placement in vehicle. Typically has much more support for seating, meaning better alignment for function and comfort. Most will adjust and grow with the child and can be used for positioning at school, tables for meals, and more. They can be set up to be passive (adult pushes) or active, where the child has the opportunity to propel themselves short or possibly longer distances, or, at least, the opportunity to turn and face something they are interested in or go across a room to pick their own book off the shelf.
Power mobility: largest, heaviest, does not fold requires an adaptive van with a lift to use. Has the same opportunities for support and positioning (and more, as the driver can tilt or recline or elevate with some models) as a manual wheelchair, but the added plus of power for independent mobility. A whole world opens up to them, but the power chair takes significant family commitment with transporting, charging, training, and the bulk of the system. Independence.
Children as young as 12 months (or less) can learn to drive a power chair. Like any new walker or toddler, appropriate supervision for safety is important, but the joy of watching these kiddos explore and learn is priceless. And they need the opportunity to learn – we can’t expect children to have a one hour trial with a power chair and expect them to have mastered the controls. Like a new walker, there will be many bumps, wrong turns, and “falls.” One of my favorite experiences as a pedi PT is power wheelchair days – love to see their faces as they figure out they can make themselves move. Simple cause-and-effect. Pure joy.
I can guide parents and families through some of this decision-making, and it takes time. Time to discuss and time to have trials and time to learn. I hate car shopping (although I love getting a new car :-)) because my head hurts from all the decisions I have to make in a short time, no matter how much research I’ve done beforehand. Evaluating for a wheelchair is even more complex. It’s an expensive decision that has to last ~5 years before insurance will possibly fund another system, so the children and families will have to live with the decision for a relatively long period. I want to make the best match possible for the current situation and for the next 3-5 years – no mistakes! And I can’t make that final decision for families; all I can do is provide information, share experiences, and organize trials. They have to live day in, day out with whatever system is chosen – can they commit to charging it regularly? Do they have a means to transport the chair? Are they comfortable with the learning process?
Aidan, from Family Synapse fame, taught me a huge lesson about assumptions and wheelchairs several years ago. He initially had a small manual wheelchair when he was little so he could learn to self-propel and be at eye-level with his preschool friends. He quickly outgrew this little chair. Then, because working on assisted walking was a huge goal that everyone in Aidan’s life committed to, his family opted for a stroller system for quick “in-and-out” trips, although it ended up being used for prolonged sitting, especially at school. When he outgrew his stroller system, we faced another critical decision point and sat back to re-evaluate. Crazily, I suggested we do a trial with power mobility and a manual wheelchair “just to see.” Aidan, at this point, was walking s-l-o-w-l-y short distances with both arms/ hands held or in a gait trainer, but showed few examples of “cause-and-effect” processing according to school. My goal was some form of independent mobility, either self-propelling or power, so he could explore and make some choices on his own. His parents did think I was a bit crazy to suggest it – weren’t we focusing on walking still?
I vividly remember the day we trialed both wheelchairs – Aidan was able to put his hands on the large wheels and, giggling, make the manual wheelchair go! And the squeal of delight in the parking lot when he turned in circles, chasing his brother, in the power chair. Both were a go….oh my.
How to decide? His mother, Heather, bravely spent a day in each chair out in the community seeing the impact of the choice in the real world and we had the option of a nice long trial with the power chair, not only to see Aidan’s skills progress over time but to see if living with a power chair was possible for their family. After much angst, the family decided to go for the power chair and I, again, started losing sleep over the decision. But, lo and behold, the day it was delivered was a glorious celebratory one and I breathed deeply when I got the text from his Aidan’s mom – “Best.Decision.Ever.” Phew.
But that’s not the end of the story – Aidan has gone on to be a good power chair driver with supervision and enjoys the freedom to buzz around his yard, push a snow shovel across his driveway, and make his own choices about where to go (which sometimes gets him in trouble at home and at school). He has learned from all his trial-and-error exploration many cognitive concepts that he previously struggled with, is now successfully learning a communication device, and continues to work on his walking and stair climbing skills. He has shown us how smart and capable he is and is now seen by his peers as super-cool.
I realize that power is not the ideal choice for all kids at all times. But we should not underestimate the potential to learn new skills when given the opportunity to try and the impact of independent mobility on learning. Assuming otherwise can be restrictive and limiting. We should include all options in our decision-making considerations, then guide the child and family through the process as they determine what is best at this point in their lives. And then step back and watch the magic happen.
Karen is a preschooler at heart, content to sing songs out of tune and blow bubbles with small friends. She is a board-certified clinical specialist in pediatric physical therapy with (too) many years of experience. She enjoys juggling roles as a therapist, clinical instructor, educator, mentor and hesitant writer who shares intentional thoughts from the pediatric world at Scatter Joy.