They told us it would get worse before it gets better. We looked at each other, wondered how it could get worse, and if we’d recognize it when it did. (If you’ve lived with one of these kids you know exactly what I’m talking about.)
Some basic facts about behavior (from Disconnected Kids, Chapter 12): Behavior, we all know, has 2 sides, good and bad. In an imbalanced brain, the good and bad sides will be out of balance. Behavior and emotions are tightly bound together and dependent on one another. They are based in our instinct for survival- fight or flight, or, approach or avoidance. There are actually only 6 emotions: Positive (Approach Behavior) Negative (Avoidance Behavior) Happy Sad Anger Fear Surprise Disgust Positive emotions reside predominantly in the left brain; negative in the right brain. Emotions suppressed in one side can be exaggerated in the other. I’m going to quote directly from the book here, because this was a confirmation to me of what I knew to be true, but didn’t know why until I read this book:
Balance in behavior means the ability to respond and act appropriately in any given situation. A child must have the flexibility to jump back and forth between emotions and behaviors. A child must be able to learn what is appropriate behavior and when to behave a certain way. It’s important to keep in mind the operative words must be able because when a child with a brain imbalance behaves abnormally, it truly does mean that he or she doesn’t know any better. (p. 237)
The good news is that once the brain is in balance, the child will be in touch with his or her emotions and have the intelligence to act on them appropriately. We are all born with the desire to survive, but the more sophisticated goals and motivations that define human behavior and individuality are developed as the brain develops, and a brain that is underdeveloped on one side will not develop the emotional structure to support even having goals and motivation. This is why traditional discipline and behavior modification techniques do not work. We do things for a reason. Since they are unable to have goals, they are unmotivated and pretty much live in the moment, concerned only with what their present need is. Punishment and rewards have little effect, and certainly not in the long term. In the same way that you can’t reason with a small child whose brain is undeveloped, you can’t reason with a kid who has FDS.
For families of FDS kids, all this creates a situation that is exceedingly disruptive. Parents don’t know how to deal with the behavior and siblings are caught in the middle of a life where there are different standards for behavior. They can’t understand why their brother or sister gets away with behaving the way they do, and why mom and dad can’t deal with it. Even mom and dad don’t know why they can’t deal with it; they just know that nothing they try ever works. I’ve tried endlessly to explain Kate’s behavior, as best I knew how, to the other kids. If their sister had visible disabilities, like a wheelchair, or a profound brain damage, there would likely have been some compassion. But, an inability to conform to acceptable standard of behavior was all they could see, and it was anathema to them that it could be allowed and not punished.
All this said, we did try, as do all parents, to teach our children to behave acceptably and responsibly. It’s just that you expect to see some growth along the way, some hint that they are “getting it”. And there are kids with psychological issues that drive their behavior. Either way, they can’t help it; it’s not their fault. But the reason behind inappropriate behavior in the child with FDS is the inability to feel his or her own body. Imagine walking on uneven, spongy ground, without the ability to see where you are going. The ground beneath you isn’t solid and you are uncertain how far your foot will sink with each step. When the proprioceptive senses aren’t functioning well, the joints aren’t sending the message to the brain that the foot has made contact with the ground. The result is uncertainty and clumsiness. We often noticed how Kate would trip over “thin air”. She had a tendency to stomp her feet, and still walks heavily to get the message to her brain. As a small child, she constantly had food on her face- because she couldn’t feel it. After many years of repetition on the part of school staff and us at home, she will wipe her face and ask if there’s anything there. She often feels a gentle touch as if you had hit her, and yet deep pressure feels good. Intuitively, she’d fill her backpack with large books and carry them back and forth to school. Bouncing- up and down, back and forth, whole body or head, repetitive bouncing has always been a part of her. As a baby, she would bounce forward and back, hitting her head even on hard surfaces. Several sets of living room furniture sustained structural damage as a result of her head bouncing. As recently as several months ago she’d sit on her balance ball and bounce up and down for hours each day, headphones on, listening to music. One day the ball she’d had for several years blew out. I replaced it with another, which we noticed had a weak spot on the seam…that let go within a day. I took it back and got another, which burst, then bought a different kind with Anti-Burst Technology, which burst inside of a week. At that point I decided that I would buy no more balls, with the expectation that her need to bounce will disappear as her brain grows. Maybe God was trying to tell me something…
So we have noticed some changes: her oppositional behavior has taken a defiant turn. What was once more argumentative, avoidance, or just disruptive behavior has become, in two words “Make me!” She used to argue, as I always said, “black is white”, and she would maintain that until you threw your hands up in the air and walked away. It seldom made any sense, and you simply could not reason with her, or convince her of anything but what she was fighting for at the moment. Now, in a sudden awareness of herself, she is defiantly proclaiming that she will not do what is asked of her. She is standing up for herself, rather than than being contrary for the sake of contrariness. It’s not fun, and it’s getting her into trouble, but it’s a sign that her brain is growing and she’s hitting developmental stages that she’s never been through before. I think we’re hitting the Terrible Twos about now. At the same time, I’m seeing happiness, and a bounce in her step (that isn’t making up for the lack of the proprioception), and she’s making gains academically. Her focus is increasing, and there’s a hint of interest in doing good work. She shines at compliments, rather than grumpily passing them off and being rude to the compliment-giver, or making derogatory comments about herself. Just enumerating the positives here makes me feel so much better about the “worse”!