Thursday, June 9, 2016

My kid doesn’t have sensory processing issues… or does she?

I was asked by the school’s occupational therapist when we began the school entry process if Emelyn had sensory processing issues. I responded with a quick, “No,” and didn’t think too much about it. In my mind, sensory processing disorder was about avoidance. When Aubrey was little, like many kids, she couldn’t stand the feeling of grass or sand. And if a shirt rubbed her the wrong way, she refused to wear it. That’s pretty typical and something most kids outgrow. Because Emelyn never had those issues, I just assumed she had no difficulties with sensory processing, but I was quite wrong. Emelyn does have sensory processing issues, they’re just on the other end of the spectrum. Emelyn is a sensory seeker, as are most of the other young ladies with the DDX3X diagnosis. What does that mean?

Instead of shying away from textures, Emelyn actually seeks these things out. She is what is known as hyposensitive, i.e. she registers sensations less intensely than you or I. She loves splashing in water, swinging through the air, playing instruments, sucking her finger, grinding her teeth, running her fingers through the grass, etc. Emelyn also has a very high tolerance for pain and a constant need to knock on and feel the world around her.

Bath time is one of Emelyn's very favorite times. She can
splash around long after the water turns cold.
Many of us have typical sensory input, that is, the little receptors in our muscles give the appropriate signals from our muscles to our brains (and vice versa) about where we are in space. For children like Emelyn, with poor sensory input, she’s not quite sure where she is in space because her muscles don’t communicate to her brain (and vice versa) as efficiently as yours and mine. In other words, she has poor body awareness.

It was on our trip to Chicago that we really learned the significance of sensory processing and how it can hold a child back. Lauren Abel, the founder of The Next Steps Academy in Houston, Texas, spoke to us about how her school addresses sensory processing, and uses ABA (applied behavioral analysis) therapy, to help children move from the primitive parts of their brain to the more advanced parts of their brains where learning happens. Lauren sat down and talked with Patrick, Emelyn, and I for nearly an hour, and I soaked up every bit of information she offered. She played with Emelyn’s feet and hands, she interacted with her, and she certainly helped Patrick and I better understand how sensory processing affects Emelyn.   
Emelyn's curled foot is a result of her immature sensory
system. It's proof that her infant reflexes are still intact. 
After that conversation, I would say Emelyn’s sensory processing issues are quite pronounced. As she ages, I imagine we’ll continue to see other sensory processing issues arise, especially if we don’t intervene. As I’m finding with most of the other young ladies with DDX3X, therapy is a key to addressing sensory issues. Just this past week we started a new therapy to address Emelyn’s sensory issues. While she’s been in occupational therapy since she was about 18 months old, we’re taking a different approach with different goals.

This first major goal of this new therapy is helping eliminate (or at least lessen) Emelyn’s infant or primitive reflexes. When you hold a newborn baby and place your finger in her palm, what does she do? She wraps her little fingers around your finger. This is an example of an infant reflex. As a baby grows, her sensory system develops and these reflexes go away to allow for more advanced sensory skills to develop. For Emelyn, because these very basic sensory issues are still affecting her, she is not able to develop to more advanced sensory skills, such as body awareness, hand-eye coordination, and motor planning.

As you can see, Emelyn curls her fingers
around my finger just as an infant would.
A second major goal of therapy is to work on Emelyn’s vestibular and proprioceptive senses. While you may only talk about the five senses in grade school. These are like the sixth and seventh senses. The vestibular sense helps with movement and balance. It tells our body and head where we are in relation to earth. It helps generate muscle tone, which we know in Emelyn is low. The proprioceptive sense helps tell our muscles, joints, ligaments, tendons, and connective tissue about position, such as, “Are you stretching or contracting?” As you can imagine, when these senses are out-of-sync, they have a profound effect on body awareness, motor planning, postural stability, gravitational security, movement and balance, auditory-language processing, visual-spatial processing, and muscle tone. 
As we progress over the summer with this new therapy, I’ll be sure to share the progress. I’m very optimistic we can help Miss Emelyn work through her immature sensory issues to achieve more advanced learning.

If you’re interested in learning more about sensory processing issues, I highly recommend a book that was recommended to me by another DDX3X mom: The Out-of-Sync Child by Carol Stock Kranowitz 

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