There are situations when the opportunity to learn and change are enhanced. I knew that my son, Don, was creating this for himself when he chose to try a new piece on his wheelchair for positioning. There is so much different about how he is supported and sitting with this new equipment that his brain needs to re-calibrate how it solves the challenge of being upright in gravity. I wanted to influence that as much as possible by making sure that he has access to all of himself – no stuck patterns or simplifying his skeleton by holding parts immobile – and by making sure that he was creating new relationships between parts of himself that helped him move easily and with balance in gravity.
Many people know that my son has quite severe athetoid type cerebral palsy, also called torsion dystonia. We found out at 15 years old that he also has a milder form of spina bifida affecting one of his lumbar vertebrae. At 29 years old, Don has had years of Feldenkrais and Anat Baniel Method lessons. He has been driving a power wheelchair since he was two years old.
The new equipment is a bar, called a sub-ASIS bar, which replaces the traditional seat belt for holding his hips. When he was younger we declined this option because it just looked uncomfortable and harsh. Don has been asking for his seat belt to be tighter and tighter trying to gain control. His movements and balance have become more and more about trying to find stability by pressing into something or tightening up muscles in a rigid pattern. Recently, Chris Wright-Ott gently suggested this bar again based on her years of experience working at Stanford Childrens’ Rehab and the Bridge School. I respect her opinion so much that I also recommended to Don that he give it a try. Chris says that the goal is to give him an anchor, or point of support. What I see is that it immobilizes his pelvis.
Don’s movement disorder is about not being able to use gravity. He is not efficient with how he pushes against the ground and he looks for stability by tightening muscles to reduce all those moving parts. Learning balance is very difficult when you don’t have a “down” and an “up” and movement options are reduced. Balance is about being able to constantly correct for your head not being vertical. The more moving parts you have to fluidly compensate the smaller the balancing movements can be. (There’s a good reason that we have all those vertebrae in our spine.) Cirque du Solell performers balance with such small movements that your eye can barely see them. They tighten up nothing. Remember first learning to ride a bicycle? Yeah – big movements to balance until you relaxed, left your head in the center and used all of the rest of you to make tiny changes to keep your head centered and vertical. Having Don’s type of cerebral palsy is very similar to that first bicycle experience.
Don has gradually worked up to using the bar for most of the day. It has not caused discomfort and now does not keep his attention at all. We started noticing differences in how he used his torso and the uprightness of his head within 1 to 2 weeks. I was excited when he started saying muscles were sore in unusual places. I knew that meant his brain was coming up with new solutions that used his muscles in ways he hadn’t been using them before.
With his pelvis immobile Don has a different foundation for lining up his skeleton. His pelvis is now an anchor. Typically developing infants learn to use themselves this way. As adults we take for granted that we sit on a base. Don has never had this experience before. I wondered what his brain would do with it. How would he stack up his spine, ribcage, shoulders, neck and head? Would he be able to do more balancing and less clenching with this stable base?
We’ve started doing lessons in week three. I have been traveling a lot so it has been awhile since we have done a series of lessons together. Since it has been so long I expected him to have lots of trouble settling down on the table and stopping compulsive muscle contractions. I was pleasantly surprised when half way through the first lesson he took a big breath and just settled down. The next lesson it only took moments. There were major issues, which we’ve worked with in the past, with how he was lining up the vertebrae in his lower back (that vulnerable spina bifida area) and his neck, but they changed so quickly that I was amazed. It feels like Don has the opportunity to create something that was never possible before. Today I took these photos because I was so excited about the learning he is doing.
One of my concerns was that by adding this bar, which is a compensation very much like a brace and is an external substitute for learning, Don would lose ability to sit when not in the wheelchair. Quite the opposite is true as you can see. His whole system is quieter, he is wiser about using gravity, and able to balance with far less effort. He has real confidence about his ability to keep himself safe sitting on my table.
I’ll put a video here showing how Don gets back into his chair after lesson #4 once I figure out how to upload it.
I’m excited about the opportunity that Don has created and really looking forward to exploring where he can go with this. This is not a solution for every person in a wheelchair but you can see that the novelty and variety of trying something new gives an opportunity for new experience and learning.