I know so far I have written about the emotional side of living with a child with SPD, but I want to also cover what Ellie’s diagnosis encompasses and how it manifests itself in her daily life. I am not an expert on sensory by any means, so I want to make that clear. This is what I have learned through Ellie’s continued OT and many books and articles on the subject. My favorite resource for all things sensory is The Inspired Treehouse.
When you have sensory processing disorder you can have trouble with just one or many of the senses your body and brain use to process stimuli. Who knew the body had more than 5 senses? I know that I didn’t. Mind blown! The body actually has several senses that we haven’t learned about. As children we are taught about the five main ones: visual (sight), auditory (sound), tactile (touch), olfactory (smell) and gustatory (taste). There are actually three more. The reason that we don’t know much about the others is because these senses run behind the scenes in our bodies and are not something think about to make them operate. The three we don’t hear much about are vestibular, propioception and interoception. The senses that Ellie has the biggest issues with are propioceptive and interoceptive.
The propioceptive sense can best be described as knowing where your body is in space. This sense is how we do things like push, pull, squeeze, or jump. It allows us to know where our arm is without looking at it or know how to find our nose to scratch it without being able to see it. You can be over or under responsive to this sense as with any of the other senses. You can have a withdrawn lackadaisical kiddo who is under responsive or an aggressive linebacker who is over responsive. Issues with propioception can look different in every child, but in Ellie’s case, it is mostly that she doesn’t understand how much force to use to do something. She has trouble being gentle. These sensations come from our joints and their connective tissue and alert the body where it is in relation to the world. For example, I said Ellie has issues with being gentle. She is literally a bull in a china closet. I call her hugs “football hugs” because you may very well be tackled to the ground by her trying to show you affection. She will come at you full force for that hug and you better be prepared and brace yourself for a take-down. This is also why she seems to have an abnormally high pain tolerance. She has no idea that what she is doing is out of control. She may injure you while trying to tickle you. The inverse of that is she holds a pencil too lightly and cannot control it enough to draw or write. In order to help her propioceptive issues she needs tight bear hugs, or rocking. She needs to carry heavy things, jump or run around. These activities all give input to her joints and can calm her body for up to several hours.
Although children with SPD may have deficits with some senses, they may be over sensitive in others. For example, Ellie has an amazing sense of smell and taste. Maybe someday that will be helpful to her but for now she notices the slightest difference in foods or environments because she tastes and smells things I cannot. Some smells completely overwhelm her. Now let me be clear, I am not talking about that wall of scents that hits you as you enter Bath and Body works, but instead something really subtle to you or I. She may announce very loudly that you need to brush you teeth simply because you ate a food she doesn’t like. Certain sounds also bother her. She completely loses it when I vacuum, run the garbage disposal or just flush the toilet.
The last sense that we know are taught little about is call interoception. This is the sense to know what is going on inside our body or to understand what our bodies need. This sense controls hunger, thirst, pain, when we need to use the bathroom, sickness and tiredness. So it is how our bodies handle the signals our brains give to our bodies and how they respond to those signals. You can be hyper (over) or hypo (under) sensitive to these signals. So you may have a child who is extremely aware of hunger, thirst or pain and it may be excruciating to them. On the other hand, you may have a child who may appear unaware of these bodily needs completely. With Ellie we have experienced a hypo sensitivity to pain and hypo sensitivity to her body letting her know she needs to go potty. She is unaware until her underwear is already damp. It is only after it becomes wet, that her body alerts her to having to use the restroom. It also can cause extreme constipation or withholding of stool. We have been seriously potty training Ellie for 5 months and are still struggling with both urination and bowel movements.
Because SPD is so all encompassing, everyday activities like grocery shopping can horrible. The smells, lights, noise and the restraint of the cart can set them off. I plan to go over some things that have made these daily activities easier for us in later blogs.