My daughter is nonverbal also. She is 11 years old, but we have already been through one of the experiences you describe. Last year, she had a ruptured appendix and heart problems that landed her in the ER, then transferred by helicopter (!) to Children's Hospital. The only way I knew something was really wrong was when after 2 days of being lethargic and having a low fever, she began to limp. At the ER, blood tests showed infection, although she didn't really respond as if it hurt when you pressed on her side. When the doctor came in at 3am to do the appendectomy, she discovered that it had already ruptured, maybe as much as 2 days earlier.

It sounds scary, and it was. I guess my advice to you is just to keep an eye on your son and know what isn't normal for him. If you won't be with him when he's an adult, find a care provider that will take on that responsibility. Trust your instincts - that's really all we can do. Good luck.

It is such a guessing game when health issues happen to these kids. My daughter Tessa has epilepsy, which took a while to convince some of the doctors. Then she started going blind when she was nine. I thought she just had pink eye but it ended up being an eye disease called Uveitis. The treatment for this is kind of a double edged sword because it required numerous cortisone injections into the back of her eyes. These injections brought on cataracts and Glaucoma, but without them she would have went totally blind anyway! She did lose all the vision in her right eye unfortunately, but still has good vision in her left eye with her bifocals. Uveitis is a side effect of autoimmune diseases so we also found out she has arthritis. She has required numerous surgeries for all these conditions but she is still a wonderful young woman and the bravest person I have ever met!!!

My son is 16 with limited language. We discovered that he had a detached retina after we discovered he could not see out of his eye. The doctor said the detachment was old (can tell from the scarring). So although we did surgery we did not get a good outcome because it was too late. Also scary. We now get his other eye checked frequently.

We've tried different programs to teach him how to tell us it hurts. So far nothing has worked.

This is something I've always worried about. It's a guessing game, isn't it? :( Wish I had a suggestion....