One of the most obvious things about Rhombencephalosynapsis in our house is the flapping that goes along with it. When Abby is excited, tired, nervous or feeling any extreme emotion she flaps, A LOT. People will sometimes ask if she is autistic because spectrum disorders are so commonly associated with flapping.
She also rolls her head (from side to side), spins in circles and tenses the muscles in her arms and legs repeatedly. Sometimes when we are out in public I catch people staring. To them I am sure it looks odd. But sometimes when I see people staring it takes me a minute to get why. To us flapping, spinning, head rolling, etc is such a normal part of life we flat out don't notice it.
They have worked on it in OT. Every therapist she has ever had has taken stabs at stopping or minimizing it. Nothing has ever helped. Almost every parent of a child with RS reports some level of flapping or rolling. So for us it's "normal". That being said, every once in a while, when she is excessively flappy I take notice. I wonder whether it bothers her or if it will. I wonder if it will be less extensive as she ages or whether she will always be a flapper.
I am sure over the next few years therapists will continue trying to make it "better". We would argue that it is just a part of who she is.