Yesterday I talked about the things we’re doing for TwinkleToes, the sensory activities we do for her. To show a little of the difference in the way different types of sensory issues must be treated, tomorrow I’ll talk about what we used to do for GlitterGirl, who had the completely opposite type of sensory issues, so we had to do different kinds of things with her. Today, I’ll explain why their sensory issues were (are) so different.
Both were deprived of sensory input, though GlitterGirl’s sensory deprivation was a whole lot more severe. But, GG wasn’t institutionalized for as long, either. Another factor though: GlitterGirl had a caretaker that cared for her, and I didn’t see that TwinkleToes had anyone who cared a bit about her.
My belief is that GlitterGirl’s brain adapted to the “no sensory input” atmosphere of her orphanage by becoming more sensitive. I’ve mentioned before that her crib was in a room without electric lighting (some light would have spilled in from the hallway at night, if those lights were on), and that there was a little bitty window that was dirty and grimy and didn’t let much light in. Something the rest of us wouldn’t see/hear/feel/smell as sensory input, she turned into sensory input. It’s like turning the squelch on a CB or ham radio up or down – she turned it way down so she could pick up more stuff. Which was fine while she was in that dark, colorless, music-less, place. But then we took her out into the world, where there are colors and textures and sounds and smells that she’d never encountered before, and it was just too much for her. It’s like taking your Ham radio settings you used on a deserted island and then going to the big city without changing anything around. There would be too much stuff coming in, you wouldn’t be able to make sense of it. We did a lot of work with her before she could live in the real world without feeling that she was being bombarded. She is still sensitive to loud noises and chaotic situations, but as she’s gotten older I’ve taught her to focus on one thing when that happens, to pick out the one (or maybe two) things she needs to be paying attention to, and to not let the rest of whatever is happening get to her. I love watching her run around outside with her friends, when everyone is whooping and hollering and running every which direction and she’s right in there with them, totally enjoying herself. And when I watch her rock climbing and rappelling, sometimes I want to cry, because I never thought she’d be able to do something like that, with so much sensory input. She’s come such a long ways. But, she’s probably always going to freak at the least little injury, and she’s probably always going to insist that her socks go on just exactly the right way, and I’ve resigned myself that she’s always going to act like you’ve hit her in the head with a hammer if you snag on the least bit of a snarl when you are doing something with her hair.
TwinkleToes, on the other hand, turned her squelch way up, so she wasn’t picking up anything at all. I believe this is because she learned crying didn’t get anyone to pay attention to her, so she stopped crying. Hunger pangs did her no good, since she had no way to make them go away, so she tuned them out. She had more unpleasant sensations than pleasant sensations – so she turned the squelch up so she didn’t feel any sensations at all. Her orphanage had a lot of screaming babies not being paid attention to when we were there, plus there was music over loudspeakers, there were colorful posters on the walls, and there were huge windows with a lot of light spilling into the rooms. At first glance, she had lots of sensory input, but she apparently tuned it all out. From what I could tell, she had no pleasant sensory input that involved interacting directly with her. The only thing pleasant was likely being fed, but she was so malnourished and so skinny… I think once she turned off those hunger sensors, then being fed was no longer a source of pleasure. Plus, the bottle was just propped up, with the end of the nipple cut off so the formula just fell into her mouth, there wasn’t even the pleasure of sucking.
When something happened to TT in those first few weeks with us that should have hurt (bad), she just looked at the injured part of her body with total detachment, like it belonged to someone else. There was no reaction at all. After a few seconds of watching her do this, I reacted for her, pretending that she was making a big deal about it, and making a big deal about how I was taking care of it for her. We had to teach her that it was okay to cry, we had to teach her to tell us when something hurt. The problem with that was that when something should hurt, she started telling us that it hurt and reacting appropriately, even though (apparently) it didn’t hurt. So we thought everything was okay. But it wasn’t, she had just watched her sister (the drama queen) and taken her cues from her about when she should cry. So for a while I thought TT’s sensory stuff had worked itself out. But then we started having meltdown issues and nothing was working so I went back to square one and started reading through my books to see if I was missing something, and I saw some red flags that there were still sensory issues. And, wonder of wonders, we started dealing with the sensory issues and the meltdowns stopped.
So, to recap – GlitterGirl had almost no sensory input, but she had a caretaker who cared for her and who likely reacted as best she could when GG cried about something. Her caretaker had a whole lot of babies to care for, so every cry probably didn’t get reacted to, but at least some of them did. GG’s senses were made more sensitive, so that in her sensory-deprived state she could get some sensory input. But that meant when she went out into the real world everything was too loud, too chaotic, too much.
TwinkleToes had some sensory input in her environment, but she was practically starved and was malnourished, and she had no one to react to her cries. So she turned her senses to less sensitive, as that made all of the unpleasant things fade into the background for her. So now she is a sensory seeker, she needs more sensory input than the average child, or she goes out of control.
That’s an oversimplification, of course. There is more to it than that, but you get the general idea of how circumstances in an orphanage can create different kinds of sensory issues.