Child Has Klippel Feil Syndrome, Trouble Organizing Thoughts. Suggestions?

My son is 9 years old and was diagnosed with Klippel Feil Syndrome at birth. He is in 4th grade and very smart, but he does have a problem composing his thoughts at a speed that some of his teachers feel he should be able too. He also has some problems organizing his thoguhts into writing which is extremely important at this stage in school.. With KFS being a rare disorder and not alot being known about this I have a hard time explaining some of the necessary needs of my son. Do you have any suggestions about this. I do believe these issues are related to his KFS and not just him being a boy. He is in the gifted program at school and is very creative, he can verbally tell stories and relate ideas but putting things into writting and keeping his literal thoughts organized is difficult. I ve had doctors suggest drugs but he isn t any more hyper than any other normal 9 year old boy. He does have to have both sides of is mind occupied when in class learning, he will doodle with one hand while his teacher explains the lessons and then he will work on his lesson. If he cannot do this he has a difficult time relating to what the teacher is discussing. I would appreciate any suggestions.