Are you saying that your son was born with a cleft lip and palate, Mom? One of my sons has a submucous cleft palate (that's one with the skin over the cleft.) His lip is normal, and like the others you talked to, he does not have any skin tags.
Did your son have surgery? It is interesting that he doesn't like to have his ears touched. You should make sure to mention this to the pediatrician. Sometimes that indicates that there is a sensory problem, and an occupational therapist can help with that.
It is VERY important that you have his hearing checked. The speech work you have for him will not help if he is hearing impaired. They have a room they can sit him in, with you and check his hearing. Do this at the Children's Hospital.
PLEASE, get passed this thing of thinking that you don't want help from the government. That's noble and all, but your child's LIFE comes first. If you qualify, you qualify. If you don't, you don't. It is vital that you get the help. Remember, you have to pay to help this child until he's at least 18 years old. That's a long time! A lot of the intervention will have to be paid by you. Accept help that you CAN get, okay?
I hope that you will get a test on his kidneys done to make sure that this isn't a problem. If it's covered by insurance, great. If it isn't, allow the children's hospital to help you.
Dawn