My Story

My son has a verbal IQ in the high average/near gifted range, a performance IQ a full 30 points below. He has trouble with balance, coordination, and ball handling skills, and can't remember how to write his own name in cursive unless he practices it regularly. He is Mr. Detail, and can remember almost everything he ever read, heard, saw on TV. He has always had a huge vocabulary---I can remember that when he was a toddler, people would comment on how many "grown-up" words he was able to use. They thought it was cute, this little guy in diapers saying all these complex words that normally come out of someone much older. At 11, he still commands a great vocabulary, but now the comments are things like, "William is really smart, but he's weird!" That particular comment really bothered me, because it came from an adult in our extended family.

The most frustrating things about NVLD are that your kid looks pretty "normal", is obviously bright, and can clearly understand that he is "different". My son works from a position of fear, mainly...fear that he is worse off than we're telling him, fear that other people will find out he is
in therapy (speech and OT), fear that he is being made fun of behind his back. And that fear often turns to anger. That's not good. He has an SI disorder, so he is in a constant state of disorganization anyway. My personal belief is that he lives his life in "fright" mode, and at certain points, crosses over into "fight" just to gain a sense of control. In this regard, the OT has been a real hero. If you ever doubt that SI intervention makes a difference in someone's life, call me. My little boy couldn't cope without it. I can tell when he misses a session (we always try to make it up so that he can maintain his control). It literally holds him together emotionally, and he loves it, even though he works way harder in there than I could ever get him to at home. He also visits with a wonderful child psychologist here and there, just to talk things through when he is feeling overwhelmed. She pointed out to me that sometimes he can't even attach a label to what he is experiencing, just knows that it is not how he wants to feel. It helps him to have someone who will just listen and help him realize that his feelings are valid.

Part of his "weirdness" comes of not being able to pick up on those nonverbal cues we mentioned. I can remember when he started working on this in speech, the SLP would ask him, "If you are talking to me for a long time about something and you see me yawn, what would that tell you?" He responded that she must not have gotten enough sleep. He truly didn't realize, until the SLP taught him, that part of conversing was listening to the other person and
watching to see if they were showing signs of understanding what he said, were bored, were getting angry, etc. So, in real life, what happens is that people just walk away from him. Makes me want to cry when I see that. He doesn't have a lot of friends, doesn't know how to make friends, really. But that, too, is getting better with intervention. And the few friends he has are

My son is a bright, beautiful, sensitive kid who is going through life afraid that he might be stupid, defective, bad. Every night when he says his prayers, he makes the same request: "Please help me control my temper." I think the most important thing that anyone can do for ANYONE else, and especially for these kids, is to give them acceptance. Cut them some slack.
Take time to listen to what they are saying (even if it is driving you nuts), redirect it into more useful conversation when possible, and help them see what your thoughts and feelings are when you are talking with them. Behind that angry little boy with a "weird" manner is a frightened kid, who would give almost anything to feel safe and "normal".

A Concerned Mom