Tangles is making communication progress!
Tangles and I had a wonderful moment of communication today. I was hanging out with her this morning while her mother came and went running errands. Tangles and I were both pretty tired, so we curled up together on the couch, just relaxing, doing her special fist-bump.
She likes touch, so I started rubbing her shoulders. I couldn’t tell whether or not she was enjoying it, so I said “You know, it’s ok to tell me to stop if you don’t like this. You don’t ever have to let people touch you if you don’t want them to.” I wasn’t sure she’d follow that, but apparently she did.
Tentatively, she knocked her head back against me and the couch– not hard, but deliberately (head-banging is her way of expressing protest, and usually it’s pretty forceful). I took my hands off her shoulders. She banged her head once more, then stopped. After a moment, she slowly leaned back against me again, relaxed again. I fist-bumped her to let her know everything was cool between us, and gave her a quick hug. I was so proud. In that moment, I envisioned a future Tangles, one who would advocate for herself, stand up for her rights, and communicate her needs to others.
The other day Tangles went to the doctor, who suggested putting her on much higher doses of anti-anxiety medication to stop her from head-banging and slapping people (she smacks people to get their attention, not to cause harm, but ataxia means she has little control over a motion once she initiates it, so it often seems like she’s hitting aggressively). Fortunately, her mother was as horrified by the suggestion as I was.
The head-banging can be dangerous for Tangles, and the slapping can be harmful to those around her… but ultimately, these are still good developments, signs that Tangles is coming out of her shell and letting other people know her preferences. Her mother and I talked about the possibility of getting a therapist to help her learn less violent ways of expressing herself, but we both agree that the expression itself is a critical step forward.
She’s making progress, too, thanks to her current educational setting, where she gets a one-on-one aide all day. It took her mother a while to learn enough about her daughter’s needs to advocate for an appropriate IEP, but now that she has one, it is making a world of difference. I’ve only worked with her for this one summer, but in that time, I’ve seen her learn so much.
Tangles didn’t hurt me at all today, which may be a first. She’s getting very good at her “gentle touch” motion– stroking rather than slapping– and used it without prompting several times to get my attention (usually, she hits first, then is corrected to stroking my arm). She’s learning to touch people’s shoulders and arms specifically, rather than head, face, or chest. She’s learning not to grab strangers, especially smaller children. She’s already good with animals, but lately we’ve met some very shy dogs, and she’s learned (with reminders) to sit down and stay quiet until they come to her for petting.
She’s using words more, too, although I often can’t tell what they are. When I can, I always either give her what she wants or at least tell her “I know you want ___, but you can’t have it right now because ___.” She kept going to the fridge today and standing with the door open. I’d offer her a few different food items and get no response (usually, when she’s hungry, she accepts almost anything I offer). Then I’d close the fridge (I thought she might just want to stand in the cold air, but explained about it wasting electricity). Finally, she said “its-ah!” Pizza! I found the leftover slice and gave it to her.
The more I get to know Tangles, the more I realize how much of her apparently destructive behavior is purely a matter of poor motor control. She gets around so comfortably that I forget at times how little her hands do what she wants them to. I am now convinced that her tendency to rip up books is actually an attempt to turn the pages.
She’s intrigued by books. She doesn’t want to be read to– she sometimes whimpers when I try, or grabs the book away from me– but she wants to hold books and stare into them. She knows there’s something important about them, and she wants to know how it works. She also holds her mother’s laptop sometimes, surprisingly gently, almost reverentially, staring at it with the same intensity. I know she gets to use a computer in some capacity at school, and I think she knows that it’s a communication tool, an important one.
I have no idea how to teach her to read, and it’s not my job to try. But I encourage her to look on when I read with her younger sister, who’s in first grade, as we sound out each word with my finger under it. Outside, when Tangles sits on the ground, I draw letters for her in the dirt, tell her their sounds, and relate them to words I know she finds important– cat, dog, mom, pizza, her own name.
Sometimes she seems to be paying attention, sometimes not. I don’t push or insist– I just talk until I get bored or she moves off to do something else. Once I started singing the phonics song from the Apple Starfall educational program, and after a moment, I noticed she was humming along. They must use it at her school.
I learned about the phonics song from Rhythm, after a series of miscommunications that frustrated us both. See, his communication device has a button with an icon of an apple on it, that opens the menu for food items. He would press it, I’d ask what he wanted to eat. He’d press “computer” and I’d ask what he wanted to watch on his iPad, listing the favorite video categories I knew. He’d go back to pressing “apple,” but refuse suggestions of food. My confusion was encouraged by the fact that those two buttons are right next to each other, so when he’d switch from one to the other, I assumed he’d hit the other one by mistake and was correcting himself.
In retrospect, it makes perfect sense what he was trying to tell me and how. But until his mother explained that there was a series of videos called Apple Starfall, I had no clue, and we’d both just eventually give up. I was so relieved to finally understand, and apologized to him for having not gotten the request so many times before.
The more I work with children with limited communication skills, the more impressed I am with their patience, ingenuity, and perseverance in trying to tell us things. Their efforts get so little reinforcement– again and again they are ignored or misunderstood– and still they keep pushing for us to understand them. Anyone who’s going to work with children like this ought to be dropped for a few days into a country where no one speaks their language, with their dominant hand tied behind their back, just to have some idea what these kids are up against.
I tell the children I work with, over and over, that they WILL learn more language, that people WILL understand them better some day, somehow– don’t give up, keep trying, I want to you to tell me, show me, keep on making me listen to you until I get it right. You can do it, I know you can. I can learn from you, just give me the chance. Keep going, try again, and thank you, thank you, thank you for working at it so hard.