Four years ago, we met a man named Christian “Otter” Bailey. He is a professional surfer and skater who sustained a life-altering injury while filming a skate movie. He is now in a wheelchair.
That injury did not stop Otter. He still surfs. He can still be found at the skatepark shredding and he now mentors others. When we met him, Kumaka had a 35 pound oversized medical chair. It had handles, anti-tippers and a huge backpack on it. The first thing Otter did was loan Kumaka a chair weighing less than 15 pounds, told us to take the backpack off the chair, removed the anti tippers and handles.
Kumaka had to push himself. Welcome to independence! As we got to know Otter, he gave us other tips valuable to moving Kumaka into independence—
Don’t pick him up. Let Kumaka transfer himself.
Don’t put him in the car. Allow Kumaka to do that himself, also.
At school, don’t let others push him around.
We followed Otter’s advice. Little by little, our “baby” became independent. It actually came pretty quickly. I realized we were not doing him a favor by constantly assisting him. On his own, he felt accomplished, capable, and NORMAL, because he was doing what all the other kids were doing!
When we spoke with Kumaka’s school about removing the anti-tippers and question them about the number of times Kumaka was falling, I explained to the educators— “Every child falls down on the playground. Just because he’s in a wheelchair doesn’t mean he shouldn’t fall. Otherwise, how will he learn to get up?” The school administrators learned to allow Kumaka do his own thing. Eventually, he stopped falling so often.
When it was apparent to us that Kumaka demonstrated more independence in his chair, the next step became managing his own bathroom needs. At age seven, we began teaching him how to do it. I admit, I was nervous because he is one dirty little boy. But he did great!
This allowed us to take a deep breath and let him go to the Ability First Camp in Chico, California for one week. We let our eight-year-old go by himself. We were nervous. He was nervous. But he came back with a wealth of experiences and cannot wait for next summer.
Independence is key — key to being a regular kid. The key to being an independent adult. Spina Bifida doesn’t need to mean dependence. Begin teaching independence at a young age.
Teach your kids — they CAN!
photography credits: Julie Toye Presley (Kumaka in helmet); Kumaka Jensen with his parents, Stuart and Tracy; Kumaka ready for a day at school.