Imagine pulling a fluffy, fleece blanket out of your dryer. It’s warm and it smells good and you can’t wait to crawl into your bed and wrap up into it. Now, imagine that same blanket, only when you rub it on your face, it feels like sandpaper. When you smell it, it doesn't smell any different than when you put it in the dryer. The warmth of the heat feels like fire on your skin. You would want nothing more than to get it as far away from you as possible.
This is what Bella deals with when it comes to her Sensory Integration Dysfunction, also known as Sensory Processing Disorder. Her senses don’t process things the way a typical brain does. It’s almost as if the wires are getting crossed somewhere and sending the wrong signals to her body. The softest blanket can feel like pins and needles. The cold, hard concrete of the sidewalk might feel like a day on the beach. Clothes can feel itchy and irritating, and even hurt to wear sometimes.
Although my daughter can’t verbally express the way she feels, her actions, with certain things can tell a story. One cotton T-shirt will be fine, but another from the same brand gets ripped off and discarded. She doesn’t mind jeans, but can’t stand the way wind breaker material feels against her legs.
One rather chilly day, as we were taking our family walk down the street, she stopped and laid belly first on the sidewalk. She laid her face against the concrete and smiled. It felt good to her, even though it didn’t seem like it should. That was the day we got our first “What is she doing?” from a passerby.
With sound and sight it’s a little different. When we hear a police siren or an ambulance, we can judge how far away it is by how loud the sound is. She seems to be able to do this, but not all the time. Sometimes a distant siren will do anything from make her cover her ears, to wince and cry. The same goes for light. When it’s too bright, it seems to cause her great discomfort. She loves music and seems to tolerate that at any volume. (That’s my girl.)
The way our senses work together, gives us an idea of our total surroundings. The way that it was explained to me is that she sometimes loses her place in the environment. Meaning, we “feel” where we are. If I’m sitting on a chair at the dinner table, my brain knows that I am in fact sitting on a chair at the dinner table. For Bella, if she’s on a chair at the dinner table, it could feel to her as if she’s floating above the chair, or even the dinner table. Think of the last time you went out and got a little too tipsy. To the point where you needed to hold on to something so you didn’t feel like you were going to float away. That is similar to the way Bella feels all the time. Her constant need to keep moving, the stimming, the pacing and the running are all things she does to stop feeling that way. When she’s moving, she can feel herself move. She can feel where she is in relation to her surroundings. I assume that this is always why she had so much trouble sleeping. It had to be scary to be a kid and be half awake, laying still and feel like you were floating away.
In order to counteract this for her, we generally let her keep moving. When we are at home, she is gated off in our living room (also known as the “Safe Room”). This room and her bedroom are the two rooms in our home where we have removed anything that can be tipped over, tripped over or otherwise result in some kind of injury. She can pace the room for as long as she wants on a clear path. When she sits, the floor is open enough where she can rock, kick her feet or swing her arms without hitting anything. Outside, we chase her and just try to make sure that she doesn’t do anything that can hurt her or someone else. It’s really all we can do until we can figure something else out. We’re not permitted to put up a fence or any kind of containing wall, so our options are pretty limited. The only time Bella is ever perfectly still is when she is sleeping, and even then, she tosses and turns a lot.
We’ve gone through her clothes and had her try all of them on. Anything that got a negative reaction was removed from rotation. Anything that she seemed not to mind went back in the drawer.
All of her toys are “Bella Approved”. Almost everything that Bella touches, she caresses against her right cheek. If it passes the “Cheek Test”, then she’ll play with it. If not, it goes back where she found it and there it stays. If we know that we’ll be going somewhere where it might be noisy, we bring her either earmuffs or a sound canceling pair of headphones. If it’s exceptionally loud, we’ll turn on some music for her to listen too. We’ve put up curtains in her room that keep out light, so that it doesn’t shock her too much in the mornings. This has helped wonders with her not waking up in a panic as soon as the sun comes up and though the windows. We use soft watt light bulbs in her bedroom and we try to make sure that the TV volume stays low.
The one thing we haven’t had any issues with is actually something that is rather common in autistic children. Textures of food. Some children will only eat certain textures, avoiding all others. Temple Grandin could only eat yogurt and Jell-O. Bella doesn’t seem to have any issues with food and is actually a pretty good eater.
We were told that she may have these sensory issues forever and that there is little that can be done in the long run. It all seemed quit overwhelming at first, but the more we observe and learn, the easier it’s been to accommodate her. Like I said before patience, persistence, consistency and practice. Not just my four new favorite words… it’s a code to live by.
