Self-regulation

“Just like all infants, young children with CHARGE syndrome self-stimulate in order to learn about their bodies, to extend and practice skills, to self-regulate, to amuse themselves, and to make themselves feel more confident and comfortable (Murdoch, 2000). With multi-sensory impairment the need to self-stimulate becomes more intense and more persistent because the brain is not in good contact with the body. Characteristic self-stimulation behaviors in early childhood include rocking side to side (just the head or the whole body), kicking the legs, sucking the fingers, grinding the teeth, rubbing or scratching the body with the hands, staring at light sources (often while waving a hand in front of the eyes to create shadows and visible movement), and adopting postures which create strong proprioceptive stimulation (crossing the fingers and the legs, arching the back, curling into a fetal position, pressing the head, squeezing into tight spaces). These behaviors can serve many important functions (moss, 1993), including confirming that the body has postural security, reducing the impact of joint pain, helping to maintain an open airway, reducing discomfort from constipation, stabilizing the visual field, calming down, and gaining and maintaining alertness. In the early days all these behaviors give the child’s brain a better idea of where the body is, what it is doing, and what it is capable of doing.