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.
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| 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.
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| 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.
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| 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
