Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Friday, September 16, 2011

Pt 2: The Voice of God: Developing a Conscience

In my previous post you read about Bentham's theory as to how people develop a conscience. I didn't know about this theory until two days ago. I've really been flying by the seat of my pants with Axel, but after learning about Bentham, I tend to agree with him.

When Axel first came to us, he was very much a blank slate. There had been little to no behavioral expectations put upon him, and he had no idea how to behave in public. During my visits to the foster home he pulled my hair a couple of times, laughing while he did it. Although I couldn't understand the language spoken by the other adults in the room, their faces - their lack of surprise - told my this was typical behavior for him and their failure to address the behavior told me they had no intention of correcting it. Although I took note, it would be two days before I realized just how much Axel had to learn. I was prepared but I wasn't ready.

I wrote about my first day as Axel's mother here. I knew that day we had a long way to go and a short time to get there. I had just two weeks to train Axel in the ways of public behavior before I'd have to take him through crowed airports, stand in lines, and spend hours on end sitting on a plane. I was quick to discover that tiny activity that was "just being a kid" was the indicator he was very quickly ramping up to something much bigger. I know I seemed incredibly strict with Axel, but I needed to bring his mind backward in time, to undo some of the hardwiring in there, and re-wire new pathways.

Together we did it. Surprisingly Axel never cried during those early days. I thought for sure he would become so frustrated with me, my language, and my high expectations that he would have frequent meltdowns but he didn't. I thought he'd express some sadness at the loss of his previous, easy life where he could do what he wanted....but he didn't. I wouldn't go so far as to say he liked having limits though, as that would be stretching it. Still, we did it. We made it home with both of us in one piece. Axel had a pretty clear understanding of where my limits were, but Dean was going to be a new person in his life and I knew there would be much testing. And there was.

Upon arriving home, our first mission for Axel was to learn how to function in our home. That in this house you may not do a,b,c, but you are expected to do x,y and z. Axel learned quickly, and soon I didn't feel like I needed my eyes on him every second. We also have Angela in the house and although I'd been told Axel had often played with a neighbor child at the foster home, I wondered who had supervised because he really had no idea how to play. When Axel and Angela played together they had to be either in the living room or Axel's bedroom (which is about 10 feet from the living room.) Angela can get easily carried away too, so between the two of them I had to always keep a close ear on them. ONCE I had let Axel play downstairs in the basement with Angela. ONCE. He just wasn't ready for that kind of freedom and self monitoring. To be honest, Angela wasn't ready to have this new brother invading what had, until that point, been her own private domain.

Axels spinal fusion surgery forced us to take a step back since he couldn't do the stairs without a lot of help. Angela would often come up to Axel's room to play then go back to her lair. Ten to fifteen minutes was about all they could handle. The few times we had other kids over just sent Axel over the top and he couldn't contain himself. He wasn't ready.

Slowly the two kids learned about one another, (including how to manipulate each other!) In the meantime Dean and I also taught Axel how to behave in public with us, and although for the summer we had PCA services (personal care assistance, like a well-paid babysitter who often has extra training) for a few hours each week, I did not allow them to take Axel out in public. He didn't yet understand that he has to behave for ALL caregivers, not just us. That meant he first had to learn to behave for other caregivers in our home environment. When we did have a PCA we usually limited the time to 3-4 hour blocks. The days when I had someone there for an entire day were rough on everyone. Often I had my PCA take Angela out of the house to do something Axel wasn't able to do with his halo, giving everyone a break from one another.

Stay tuned for Axel's transition into school...

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