Yesterday I wrote about what it's like for me to live with fibro, using sticks as analogy for energy/emotion/ability and so on that makes it possible to get through, and hopefully enjoy, a day. Now I'll use sticks to explain what it's like, as far as I can tell, for Simon to live with Sensory Processing Disorder.
Fortunately Simon doesn't have problems with pain or energy, he's limited by how much sensory input he can handle. For him, running out sticks means anxiety, distress, screaming, hitting, throwing, or any other sort of lashing out, like the cup of water he threw on me a few days ago. The hitting might be in response to something non-sensory, like needing to clean up, but it's often due to a lack of sticks. When he's out of sticks, his (already limited, he is only four) ability to regulate his emotions is gone. All kids lose sticks for things like being hungry, tired, overstimulated, and having a variety of other needs unmet.
Simon's unique sensory system causes him to experience most sensations more intensely, leaving him one stick down for walking down the block near traffic, where other kids would be unphased. Music is very good for him, but it takes at least one stick to listen to. Some things are obvious, loud noises take stick, touches to his face take a stick, and busy places take every stick that's ever grown on a tree, shrub, or hardy plant. Others have been a surprise, like losing sticks for trying to draw, or learning to eat with his hands. Getting a spot of water on his clothes used to take a bundle, but now only requires a small twig. Getting dressed in the morning takes a stick, changing plans or do something spontaneous takes many sticks, and tolerating the fan in the bathroom would take an entire forest, if he had it available to him. Playing near other kids takes a stick and playing with them takes a few more. Visually busy environments, places with people or things moving, too many colors, or too much clutter take about one stick every half hour, depending on the intensity of the situation. It takes sticks to sit in a chair, but not to sit on the floor. It takes sticks just to brush his teeth. His internal sensory issues seem to be pretty mild, so it's hard to tell, but it may even take sticks to move his body through space.
One wonderful thing we've learned is that Simon can get sticks back. When he builds a giant pile of pillows and jumps and bashes into it, it's not just fun and exercise.The kid is getting sticks. The compression of his joints with each jump and crash brings order back to his system and gives him a few more sticks to regulate and tolerate. Just like me, being in the water seems to provide sticks, and deep pressure, like those ten blankets he sleeps under, give him sticks. Taking sensory breaks or finding ways to cope, like wearing headphones, stretch out his stick supply, so experiences the same amount of input over a longer period of time, giving him more time overall to participate.
In the long run, he can also train his system in such a way that activities are less costly. While a kiss on the cheek used to take a stick, it now may only require a twig. By simply growing older, slowly, safely, experiencing more textures, spending more time in water, and getting his stick building activities in daily, he's become less sensitive to tactile sensations, and keeps a lot more of his sticks. He'll always need to be cautious of how his sticks are stacked, but we gratefully expect him to eventually hold on to many more of his branches.
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