The most frustrating thing for a mother, or a parent for that matter, is to know her child is upset but not know why. J is taking a bath at the moment but just a few minutes ago he was crying and inconsolable. Most kids can tell you what's wrong. J can't. Through the fun of 20 questions he finally nodded at me. Tummy ache. It breaks my heart that I pretty much have to guess at what he needs or wants even though we've worked on and off for years on communication. (before I get tons of emails slamming me for being inconsistent with that work, I simply mean that its a continuing thing for him and we tend to get stuck in certain areas of communication.)
Sometimes I don't think its a tummy ache or even a head ache that upsets him. I wonder if he simply doesn't know how to let me know he's just having a bad day or something is bothering him. J is a rather independent child. Always has been. Instead of using words to get what he wants he'd rather do it himself. If I forget and hand him a shirt that has a tag in the back, I hear the rip that signals he's gotten rid of the offending irritant. If he's hungry and my mind reading skills are on vacation, he can be found rummaging through the cabinets or the freezer.
I sometimes miss out on so much because he either can't or chooses not to speak or sign. he can say some things, although you have to listen somewhat carefully to understand him when he does use words. A lot of it is echolalia --he's simply repeating what he's heard before --but some words are appropriately used. While running his bath water I clearly heard him say "stop it". as if he was telling the tummy ache or whatever is bothering him to leave him alone.
Most of what I know about my son is through pure studying him. He giggles happily when he finds a (rare) stash of chocolates and thinks he's gotten away with something sneaky. Given the choice between pizza and shrimp, he will almost always choose the shrimp. Cats are fine as long as they stay out of his room and off the furniture. And for whatever reason, he does not like to see his dad wearing a black tee shirt. He tries his best to convince him to take off the offending item and J promptly throws it away. I would love to figure that one out.
I know in heaven my son will no longer have a disability. He will be whole, as the rest of us will be. I fancy myself asking him then about all the secrets that he had here on earth, but when that time comes I honestly don't think any of the earthly things will matter anymore. For now we will continue to encourage speech and communication. I will continue to watch him, learn from and about him, and love him. And I will never give up the hope that he will one day speak to me.