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 

My baby’s first AFOs

You know how most parents keep their baby’s first pair of shoes – the little patent leather Mary Jane’s or in Aubrey’s case, the pink size 3 Nike’s? As it seems to go, things will be a little different for Emelyn. We’ll instead be tucking away her first pair of AFO’s (ankle foot orthotics) very soon. Like with Aubrey’s little Nike’s, we’ll pull them out in a few years and ooh-and-ah over how absolutely cute and tiny they are. By then she’ll probably be on her fourth of fifth pair of AFO’s and the cuteness will be long gone. They’ll probably be dirty and smell like feet and all I can think about is – bring it on! Since Emelyn got her AFO’s this past March, she’s made incredible progress bearing weight on her legs and is now consistently taking steps with assistance from one of us or a gait trainer. We even had to have the velcro refreshed and the “pringles” replaced (only other AFO mom’s and dad’s know what in the world that means!) because of the frequent use they were getting. (A big thanks for my father-in-law and Virginia Prosthetics for making that process painless for Patrick and I!) 

Emelyn waiting on PT to start.
(PT stands for play time, right?)

Emelyn doing some standing with her good
buddy, Emeline (her friend in the mirror), and
her physical therapist Ashley.

We’ve been talking about Emelyn’s feet since before she was born. It was her feet that first raised concerns in utero. While we’ve since turned our attention to other parts of Emelyn, we still often come back to her feet. Because of her low muscle tone, Emelyn’s joints are very loose and flexible. In her feet, this means the soles of her feet turn in as opposed to hitting the floor flat, even when bearing her full weight. To me, it looks painful to bear weight this way, but it doesn’t seem to bother her. Then again, not much bothers this kid. When Emelyn was younger we used heal cups in her shoes to help keep her feet in the proper position, however, as she grew and began bearing her entire body weight for longer periods of time our PT recommended AFOs . I wondered if they would be welcomed by Emelyn or cause distress, but like with most things, Emelyn doesn’t mind them at all. In fact, she enjoys being upright. Standing and taking steps are becoming routine to her. 

Emelyn's natural weight bearing position without her AFOs.

I get asked regularly, “Do you think Emelyn will walk?” It’s a question I once dwelled on, but not so much anymore. To be honest, dwelling on much of anything with Emelyn seems fairly pointless. Developmentally speaking, she does what she wants, when she wants. We’re just there, along with her wonderful therapists, to help the process along. I do believe Emelyn will eventually walk, though she may always need assistance, but I don’t think any of our happiness in life is tied to her ability to get around via traditional methods. Who knows she may just drive her Go Baby Go car around forever. We’ll need to work on the whole turning thing though – ha!

Emelyn in her Go Baby Go car back in February
of 2015, just before her 2nd birthday.

Hippotherapy

No, it’s not therapy on a hippopotamus – though wouldn’t that be fun. No, hippotherapy is a form of therapy using a horse. Emelyn began hippotherapy in August with her occupational therapist. While I wasn’t sure what I was expecting, I’ve been incredibly excited to see how she’s progressed. It’s not just the progress she’s made on the horse, it’s the progress she’s made because of the horse.

Emelyn cracking up her therapist, Megan, and the
volunteers at Healing Strides.

Hippotherapy uses the gait of the horse to provide input similar to a human’s gait. When Emelyn started in August she required quite a bit of core support on the horse, however, within just a few short weeks Emelyn now requires very minimal support. And more importantly, those advancements on the horse are translating into her everyday development skills. When Emelyn started hippotherapy she would drop an object in her right hand if you placed an object in her left hand. She didn’t seem to have the ability to coordinate both hands at the same time. Fast forward six weeks and she’s now able hold an object in each hand simultaneously for nearly half a minute. 

Clearly riding side saddle is just as funny.

There are large motor benefits to hippotherapy as well. The gait of the horse improves stability, balance and strength, while helping to “normalize” muscle tone (read my layman’s explanation of low muscle tone here). These are all areas of weakness for Emelyn that have shown improvement over the past several weeks.

Backwards...why not!?

While we’re thrilled with the physical improvements we’re seeing in Emelyn from hippotherapy, it’s also a blast to see her so happy while riding. I’m definitely a believer in this non-traditional form of therapy. Special thanks to Healing Strides of Virginia in Boones Mill, as well as the numerous volunteers, for the good work you do for so many little kiddos who benefit from hippotherapy and therapeutic riding. 

Low muscle tone in layman’s terms

Several weeks ago we traveled to UVa to meet with Emelyn’s neurologist who released us from routine follow-up visits with her. While seizures are a possibility, both because Emelyn has an underdeveloped hippocampus (revealed via a brain MRI) and because of her DDX3X diagnosis, we’ve been fortunate so far to have avoided them. Should we have any neurological concerns, including seizures, Dr. Heinan is only a phone call away.

During the appointment, Dr. Heinan remarked on Emelyn’s strength which led into a great conversation about how hard it is to explain low muscle tone. I told her, “I think people think Emelyn is weak because she has low muscle tone, but she’s actually very strong.” If you’ve ever been unfortunate enough to catch one her involuntary fists in the face you know what I’m referring to – that little hand has some real muscle behind it. Likely from two plus years of physical therapy.

Dr. Heinan shared a great analogy I couldn't help but share here. She compared low muscle tone to a weeping willow tree. While weeping willow trees appear to be weepy and floppy, they’re very strong trees. They grow tall with wild, flowing branches. And those branches can support the weight of a person swinging from them. However, unlike an oak tree, which looks tall, tidy, and strong, you can’t stand a weeping willow tree branch up on end. While strong, it’s just not made to easily support itself like an oak tree.

I loved this analogy for so many reasons, but mostly because who doesn’t love a weeping willow tree. They’re beautiful and unique – just like Emelyn.