Plan for participation & possibilities, then make them happen
I love to think about “what if’s.”
The clients I work with, kids and young adults with physical and often intellectual limitations, do some amazing things. And this past year, I’ve observed them challenge themselves in new and exciting arenas. All because they and their parents say, “yes, why not, let’s give it a try!”
My work as a pediatric physical therapist is to understand impairments and disabilities in infants, children, and young adults, then to promote movement, ability, skills, and, most importantly, participation in life, all while limiting the secondary issues (those structural problems) that arise from their disability. These consequences of their disability, unfortunately, tend to negatively impact them as they grow. My role is to minimize that negative impact.
Successful therapy is an art and a science, and a relationship.
One main focus is to encourage these kids (who work harder than the rest of us to sit, stand, or move) to participate in activities for FUN – activities which bring them joy, encourage movement & fitness, provide opportunities for new relationships and friends, and, perhaps, a new life-long passion. If we can make it fun, then they may do it for years and hopefully keep themselves healthy, lowering the impact of their disability as they age.
Scarlet, a smart 5 year old with cerebral palsy, a new-kindergartener, has been on an amazing journey of abilities. I have had the privilege of working as Scarlet’s PT since she was almost a year old, and walked with her family through the early stages of learning about her special needs, her subsequent diagnosis, and her journey for independence. She is one of the most amazing children I have worked with, especially her fierce determination (“I won’t need you when I go to kindergarten Miss Karen, I’ll be all set,”), her persistence in learning new, challenging activities (“See, I’m practicing catching my balance, see?”), and her enjoyment of all things.
Scarlet has slowly but surely learned to crawl, to walk first with a posterior walker, to take some tentative steps, and now to walk independently and to “run.” I took great pleasure in the video her mom sent me of her first day of riding the school bus to school – what an accomplishment to walk in line, climb those tall bus steps – all with a (larger than her) backpack and other kids jostling along!
And she wants to be a ballerina and a “famous singer.” About a year or so ago, when she was just learning to balance sufficiently to walk independently without (too many) falls, I asked her what she wanted to learn in therapy. “To twirl like a ballerina.” Wow – that’s a challenging goal for a person learning to keep her balance! And with a PT, no less, whose lowest grade in college was in dance class.
This past spring, I was thrilled to be invited to Scarlet’s ballet dress rehearsal for her first recital. As I sat in the darkened auditorium, I reflected on how determined and BRAVE Scarlet is. Not only did she look beautiful in her fancy ballet dress, shiny pink satin sneakers over her braces, and fancy hairdo and bow, but she was so brave to be onstage in front of an auditorium full of people, doing a ballet routine that was super physically challenging for her. She did it with such determination and grace. It was beautiful and once again reminded me that participation in activities that bring kids and families JOY is where I need to head with all my kids – not physical therapy only for the sake of joints, muscles, bones, equipment, braces or anything. But for moments like this.Yes, practicing in ballet matched our therapeutic goals of standing balance, unilateral balance, isolated movements, strength, mobility, and more. But think about the additional fun, friendships, and joy that came with ballet lessons. Priceless. Our interventions work towards moments like this.
Tyree is another child who amazes me with his endless potential, determination, and love of all things that can be taken apart and put back together. He’s 6 1/2, starting first grade, and very busy observing and figuring how things work. His most recent passion is puzzles. Tyree also has cerebral palsy, is learning to verbally speak words (“ya baby” and “why?” are his current, universally useful expressions), and cruises everywhere FAST and competently in his posterior walker. The beach is his favorite place in all seasons.
For Tyree, all the fun of working in PT on the treadmill is his chance to buckle himself in and out of the harness and support system. He can almost perform the series of buckles without me. We are working on abilities and skills he needs to hopefully walk without an assistive device in the future. Tyree has been attending therapeutic horseback riding or hippotherapy for the past 3+ years, and this year added challenger baseball and soccer to his busy schedule. Plus periodic adaptive surfing through our local Special Surfers program!
One day, his mother shared this photo –Strengthening, mobility, isolated motor skills, while tapping into his love of “how things work” – a harness, ropes, knots, maneuvers, and more. New friendships and fun. Again, brave. Imagine his Monday morning sharing time with his classmates!
Last but not least is Alec. Alec is a young adult now and I’ve had the opportunity to work with him on and off since he was ~ 8 months old. One of the benefits of being an “old” PT is that I’ve gleaned so much from watching these babies grow up into young adults. I’ve also written about him before in our international PT magazine, APTA’s PT in Motion. You can read about his walking feats obtained in partnership with his dad, David, here. Worth the time to read.
Alec struggles with many medical issues that impact his health, and he’s often sick and hospitalized. He uses a wheelchair for almost all his positioning and mobility, and requires a lift system for most transfers. He has an brilliant smile, a great sense of humor, and is an eternal optimist. He communicates through a few signs and an augmented communication device, and knows EVERYONE in our clinic – and they know him. Through his wonderful Monarch School of New England, Alec was given the opportunity to participate in an adaptive sports program and learned to ski using an adaptive ski tethered to instructors. Pretty brave for a young man with so many health and physical issues. On one of the few warm and sunny days in this past winter, I was able to go to see him in action –
He loves to go fast, to carve down the trail, and you can hear his laughter as he descends. It’s a huge group effort with his parents, adaptive ski instructors, equipment, transportation and more, but worth the effort of all for the laughter and joy.
Alec skiing -Click here to see the action! Be sure to listen for the laughter!
Being able to participate in a sport, physical activity, or hobby brings joy and purpose to our lives, especially during our childhood. Our kids with physical challenges need these opportunities as well. These supported opportunities take funds, equipment, transportation, expertise, creativity, and more. We need to encourage participation in activities when possible, to look beyond the perceived barriers to the possibilities. Ask “why not?,” instead of leaning on”cannot.”
Let’s plan for abilities and possibilities, then do our best to make it happen.
Sometimes the opportunities can be simple:
- find a dance/swim/karate/yoga class with a small group size and an instructor who is willing to give extra time, modify, and encourage
- try ice skating using a walker (and a helmet!)
- snowshoe when the snow isn’t too deep, using poles to help
- modifying the yoga, tumbling or karate class – start with what you can do, and gradually try pieces and parts of the challenging activities
- add foot guides, sturdy training wheels and a supportive seat to a tricycle or two wheeler, or obtain a specialized adaptive bike through Amtrykes or other vendors
- get a family membership to the local YMCA and explore the water during open swim times or join a class; there are many supportive swim assists available; or join an adaptive swim class
- use your child’s adaptive bike, walker or gait trainer to explore your neighborhood, local mall or local trails; power chairs, manual chairs, and strollers get people outside and exploring as well!
Sometimes a team approach is needed:
- seeking out funding from groups, such as the Robbie Foundation in Maine
- join organizations that provide adaptive equipment and instruction, like Northeast Passage
- ask your child’s school to join your state’s Special Olympics program or organize an adaptive field day
- access partner baseball by joining the Challenger Division through the Little League
- get a listing of accessible playgrounds in your area; if none exist, petition your school or town to design and build one accessible for all children
Physical, occupational, and recreation therapists can give suggestions, provide information on adapting and modifying, and help design a fun recreational sport for kids with physical impairments. We need to be creative, non-limiting, and aware of the resources around us.
The assumption should be ABILITY, not disability.
CAPABLE, not unable.
PARTICIPATION, not limitations.
Modify and enjoy.
What types of sports, fitness, activities do your children with disabilities enjoy?
How do you make them happen?
*Special thanks to the children, young adults, and their parents who let me share their stories – thank you for all the energy you use to make these opportunities happen! I am always learning from you.
**Sarah Holden-Remick captured and shared the fabulous surfing photo. Thank you!