Just recently, in December, Eden's behaviors have gotten progressively worse. She was getting to the point that I had to get more help or I was going to go crazy. I have been trying since then to curb these behaviors. I had a meeting with the "team" and the director of the school, told me when they are having issues with Eden they had success with ignoring the behavior and she would come back to the task without incident. I then listed the behaviors she was having and she (the director) mentioned that she thought the behaviors were not sensory based, but were behavioral. When a parent that does not understand terminology hears the words behavioral, the first thing they think is that if you teach your child how to behave they won't have those behaviors. Right? So, I went off after hearing that Eden's aggressive behaviors, her running off all the time, and over all lack of self control was because I wasn't teaching her the right way to behave or that I was letting her get away with the behaviors and that's why she kept doing them. I was completely devastated. All I could do is think what a horrible mother I must be, I am doing something at home that is causing her to act like this. I need to do something different to make these behaviors go away, or at least get better.
In most cases, this may actually be true, for example when you tell your children to be on best behavior. I've told my NT children and Eden that a million times. With a brain disorder like Autism. The word behavior means something completely different. And without knowing you can take things completely out of context. The last meeting we had about Eden's behaviors, the teachers were yet again explaining how they think the issues with her are behavioral and they are having luck with using behavior modifications to get her to "comply" with tasks more. I drove home in a better state of mind than the last time thinking, "Oh good, I'm finally doing something right." And half way home I thought about other kids with Austism, who rock, flap uncontrollably, and spin.
Are those behavioral issues? No one taught them how to do that, it's not because they have terrible parents that they do that (as I know some of Eden's classmates and they are some of the strongest and wonderful parents I've met). Then I realized that Autsim is a brain disorder, her behaviors are a product of that brain. She did not learn this from anyone, she used these behaviors to get what she wants because she doesn't have the ability to properly convey through words that she doesn't like/want to do something. We did "let" her get away with more because of our ignorance on how to change those behaviors. Now we are better understand how to see a behavior and how to react. When she runs away, use your body to block her way, don't grab her because your touch will only escalate the situation then she gets aggressive. When she is obviously upset, help her express in words her emotions as she has a hard time expressing them in any way but a physical manner. And there are so many more.
Learning how Eden thinks is one of the most difficult things we've had to do. We have to change our parenting completely. She'll follow rules and rituals very well once taught them. But for example it's taken almost a year for me to feel comfortable to not be right next to her while playing outside. She used to run in the road, in other yards even across neighborhoods as soon as you let her go, now I can now sit on the porch while she plays. But recently, we have given her a little more freedom because we thought she grasped the concept of the yard very well. It used to be that she wasn't allowed out of the yard without holding a grown-ups hand. The rule changed so that when a parent is watching you, she can ride her bike/tricycle on the road. She does a wonderful job at watching for cars and such. It's been three days and we have let her do it 3 times. A neighbor came up and told me that Eden was up the street on her tricycle by herself. She doesn't understand the "conditions" in the rule that when a parent is with her she can go in the street. She is completely black and white. Either you can or you can't.
A good example of a ritual that we have that can't be broken. At the Doctors office there is one of those automatic door buttons on the door. Every time we enter and leave Eden needs to press the button (this happens at church too). After a particular long visit to the Doctors recently, Eden was at her end ready to have a meltdown. I went as any "normal" person would do. I opened the door, all Eden kept saying was, "No, no, no..." I only got the door about 1/4 the way open and I let it close. She pressed the button, we left without incident. That is the boring part of the story, the triumph is the fact first she could tell me that something was wrong, and second she didn't flip out. Any other time, Eden's "go to" behavior would have been first to start hysterically crying, run away from me, and then when I try to get her she would get aggressive. It was none of that! It was boring and even dare I say "normal".
We are slowly learning how her brain works differently, we are adapting to it. Changing the way we react to things, noticing the little things that parents of normal children wouldn't because the little things with Autism give us the most information. I learned that behavior issues are not a reflection of my parenting skills as I once thought they were, and describing behaviors as such is not an insult of my parenting abilities. It's just a way to describe what the child is doing, at that moment. I'm feeling good about the way we are going. We are so far from where we started and do have a long road ahead of us, but I'm looking forward to it for now.
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