12:54am September 15, 2014

Helping me find my elbow at an important meeting.

Please see this post for why I am posting various stories about my experiences with assisted typing and other forms of assisted movement. Please don’t just randomly respond to this post without understanding why I’m posting it, and why I’m posting these stories separately instead of all together. (I don’t have the spoons to make one giant post.)

My autistic catatonia is heavily influenced by overload, anxiety, and stress. And I had to go to a series of meetings in which my ability to live in my own apartment was on the line. So I kept freezing up completely. I had two friends trying to help me transfer into my wheelchair, get in the car, and get to the meeting, back into my wheelchair, one of them pushing me because I was too frozen to push myself. By the time we got to the meeting, I had no voluntary movement at all and was being propped in my chair, basically.

My friend had a way of helping me find my body again. Because when I freeze, a lot of what happens is that I can’t find my body. I can’t locate myself in space, it’s like my body is just this thing that isn’t even attached to me anymore. And my friend had ways to help with that.

Usually I could move my eyes first, so she would say, if you can move your eyes, maybe you can move your face. And then she would go down all the way down my neck to my arm and my hand. This wasn’t just verbal, she would touch the places that needed to move.

It was important that she touch the joints. Because for some reason, in that state, any place she touched was a place I would try to bend and move at. It’s very hard to bend the middle of your forearm. But when people aren’t competent enough to realize that, I’ve tried really hard and become frustrated enough to cause meltdowns. So it’s very important to go from shoulder to elbow to wrist to fingers, not from shoulder to upper arm to elbow to lower arm to wrist to middle of hand to fingers, or something. That second one would confuse the hell out of me.

Anyway, we got to my shoulder and elbow, and I was now able to move my arm around, even though my head was now stuck in a very awkward sideways position and it was hard to see the keyboard. But when she took her hands away, I couldn’t move my arm. We eventually settled on a situation where she held my arm up at the elbow. My wrist dangled downward, and I was able to hit individual letters that way.

My friend remarked, “This looks an awful lot like facilitated communication!” She hadn’t even noticed the parallels, because for me, our routine has always been about helping me to move. It hasn’t been specific to communication. But my friend had seen people supported at the elbow like I was being, and she was suddenly surprised and amused that we seemed to be doing the same thing.

In this case, the problem was not that my arm was trying to jam itself in the table. The problem was that my body kept floating off into outer space where I couldn’t feel it. Her touch at my elbow anchored me to my body enough that I was able to type with that hand. Which became very important during the meeting. If I had been unable to communicate, I would have had to just sit there and take whatever the agency handed down to me from on high.

My friends said that it might have even been good for them to see me frozen like that, because then they could see that the help I needed, the help I was asking for, was very real. When I freeze, truly freeze, there’s no mistaking it for anything else, because nobody can sit that unnaturally still. And the way that my friend got me connected to my body again was of great interest to the professionals at the meeting, because they’d never seen someone systematically unfrozen before.

Anyway, I got what I needed from the meeting, even though I was terrified the whole time. That day changed my life around in a major way. I learned that I could stand up to a case manager. I learned that I could file a complaint with an agency. I learned that I could win. I learned that I could get a new case manager. I learned later that he spent years undoing the damage caused by my first one, in the form of rumors about me being basically a ‘bad client’. But that was the beginning of a totally new relationship with the agency.

And if I hadn’t been able to communicate during the meeting, a lot of things would’ve gone very differently.

Many people who use FC (as opposed to just the untrained assisted typing and movement that my friends, cat, and staff have improvised for me over the years) use it for a similar reason to what was happening to me that day: They can’t keep track of their body parts. Touching them lightly on the elbow or shoulder helps them keep track of where their arm is, and that can be all it takes for them to type. Because once they know where their arm is, it’s much easier to move it.

Not everyone who can’t find their body parts is frozen like I was. Many are stimming as well. I’ve found that when I freeze, one of two things happens. Either I’m completely motionless, because I have no background movement at that time. Or I’m stimming but unable to control the stimming, because the stimming is the background movement at the time. Either way, I still need help finding my body parts and moving them at times like that.

This was not a situation where I noticed any cuing going on. My friend helped me find my elbow, but she didn’t anticipate my movements in any way. She just made sure she was continually touching my elbow and holding up my arm a little so it didn’t fall.