She’s So Organized

It’s during these times that thoughts return that have been so rare these days….that maybe someday she’ll actually be walking and talking. When I say she’s organized, it’s not that she’s organizing her sock drawer by color or using a label maker for her toy bins (although, we’re working on that). Her breathing is regular. Her eyes are open and looking straight forward. Her hands are relaxed. She laughs readily, these heartfelt, contagious laughs. She eats more.

Being sensorily organized or being regulated is really not something that I understood before getting to know Keira. I had heard of it a lot because I work with OTs and I work with a lot of kids with special needs who mention being “disorganized” or “disregulated.” It seemed like the funniest term and, not really understanding what it meant, I stayed away from that subject.

Here is the best way that I can think of to describe it: Think about the difference between a day when you are tired, forgetful, and having trouble concentrating. Or you feel jittery because you’ve had too much coffee. Or your head is congested and it feels like you’re “in a fog.” Or you just don’t quite feel quite like yourself. You can usually still do what you need to do, but you feel less efficient and kind of out of it. Consider the difference between that and the days when you feel that you are running on all cylinders and things are going great for us and you’re sharp and quick witted and you’ve got a solution for everything. That’s being “organized.”

Maybe you can understand it more easily in terms of a baby. When a baby is hungry, she cries. You’ll be hard pressed to get the baby to focus on anything else until she is fed. When she is hungry, she is disorganized and needs to be satiated in order to be organized again. But with a kid like Keira, the disruption can happen with so many things besides hunger and it can be so much more disruptive. She might be face to face with someone she’s never seen before. Maybe someone opens a soda can next to her. She could be getting weird messages from her brain and it just causes her to be less present. She might not be crying like she’s hungry but her hands are clenched, her toes are splayed, her eyes are closed, she’s breathing fast, she’s not eating, etc.

What exactly causes the fluctuations in her ability to regulate herself? It’s hard to know. It’s the organization of all of these invisible processes in the body. If you talk to anyone who does acupuncture or massage or Eastern medicine, he/she may have more insight into this type of thing than most of us do. The concept of the body’s multiple “energies” is so foreign to me. In America we tend to want scientific “proof,” visible cause effect. But I’m being challenged on that. The woo woo therapist that I see puts her hands on K’s head and on any given day tells me whether Keira seems organized or whether her “rhythms” are easy to detect. Rhythms? What does that mean? Her blood flow? Heart rate? Oxygen saturation? Level of alertness/fatigue? I don’t know what it is that Ms. Woo is feeling or not feeling.

What I do know is that I have bought in to the idea that there are days K is organized and days that she is not. And on the days that she is organized, she is so much more present with us, so much more active, and makes gains so much more quickly. There is a lot of hope and optimism to be had on these days! Her most recent period prompted me to start trying to capture the normal baby stuff that she does when she’s feeling really well. Check out the “Typical Baby Stuff” tab at the top of my blog.