So I think I’ve only generally alluded to the fact that our OT, Jackie, diagnosed Josh with Sensory Processing Disorder in early December, 2011. Prior to seeing an OT, I had been resisting going to a feeding clinic for Josh for well over a year. Finally, our SLP, Mignon, just set me down with a questionnaire one day while Josh was seeing her for speech therapy. I went through and answered questions about all of the foods Josh was eating. Given his limited diet, it didn’t take long. Mignon told me that she didn’t think we needed to go through the whole feeding clinic experience, but could simply have Josh see an Occupational Therapist in her same office. That Mignon is a smart lady. First of all, she found a subtle way to finally get me to confront Josh’s eating issues and she saved me from feeding clinic, where we might not have discovered the bigger issues that are creating Josh’s eating issues in the first place. In fact, Jackie, our assigned OT (and I love Jackie perhaps more than any medical-related person that we’ve encountered on the Josh syndrome journey so far), observed Josh eating for just a few minutes when she noticed that his salivation increased and breathing became shallow (signs of stress) when he was being asked to touch slimy food (applesauce). He couldn’t even bring himself to run a toy truck through the applesauce (shouldn’t that be every boy’s dream?). She then started asking me about Josh and his ability to get messy. I then realized that, “Gee, he doesn’t touch paint and he freaks out when he gets any kind of goo on his hands.” This all led to me being sent home with another five or so page questionnaire encompassing more broad-based sensory issues than the first questionnaire. And oh how deeply the questions resonated with me (“Aha, yes he does that. Right, he won’t do that” etc.).
We then went to the ENT the following Monday and learned that Joshua’s vestibular system is basically non-functioning. Then back to the OT, completed questionnaire in hand and new vestibular ruling in pocket, the following Thursday. It all started to come together. The OT discovered that Josh has sensory modulation difficulties. Kids’ senses can be either overactive or under reactive. In Josh’s case, it seems like his system is mostly over reactive to sensory stimuli. Within an hour of getting up in the morning, Josh’s sensory system can be so overloaded that he just shuts down. Which is why he often times just sat by himself in the corner at school and didn’t say anything (and never experimented with talking). We all just thought he was shy. Little did we know, his sensory overload had just forced him to draw inside himself for protection.
Why is Josh like this? We are not completely sure but I am learning that one cause (or at least they seem to run hand in hand) of sensory processing disorder is having one of your senses diminished from birth. The other senses can then get pushed into overdrive. Obviously, Josh’s hearing was muted since birth. Less obvious, however, was his damaged vestibular system. Did you know that we actually have seven not five sense! In addition to sight, hearing, smell, touch, and taste, we also have our vestibular system, which is located in (or near) the inner ear and helps with our balance and movement, and we also have our proprioceptive system, which works through our muscles, joints and bones to help us understand the position of our body in space.
As it turns out, Josh had been functioning since birth without a working vestibular system. Life can be remarkably difficult without the proper integration of vestibular sensations helping our bodies register where the body is in relation to the earth. Simple actions such as getting up and sitting down, walking in a straight line and any action that causes the head to move from side to side can cause literal torment, especially for babies who haven’t had time to overdevelop other systems to compensate. Aha! We now know why Josh cried so much when getting his diaper changed as a baby. It was literally torture for him to have his little head tilt backwards against the changing table and to lay on his back, without any input from the bottom of his feet, not knowing where his body was in space. Turn off the lights and you take away his vision too, which makes it that much worse. No wonder he didn’t sleep much as a baby–woke up screaming so often etc. No wonder.
And so, perhaps it is the blown out vestibular system that has contributed to his sensory issues even more so than his hearing loss. In fact, and perhaps ironically, we are learning that he has auditory modulation difficulties. He is overly sensitive to sound. And so that first summer as a baby, when we tried in-ear hearing aids the first time, and he cried (well freaked out in a strange sort of panic) every time the neighbor lady laughed, or his cousin sneezed, or his sister started up the blender, he wasn’t merely startled by the sound, he was completely overstimulated and unable to process the sounds and integrate them into his his awareness of the world. We are also learning that Josh has huge tactile defenses and this certainly is influencing his relationship with food.
I am learning that kids that lack working vestibular systems often times avoid movement and motion. They may appear to be more calm and “laid back” (not sure if we could call Josh laid back, although others have made this comment about him) than other kids their age but the truth is, this almost imperceptible quantity of less movement over time truly impacts them. They tend to be hypotonic (low muscle toned–which we’ve been hearing since Josh was nine months that he is hypotonic) and this, in turn, leads to avoiding doing things (like climbing and such) that would help build more muscle tone, or at least give them proprioceptive input. And because they aren’t getting the necessary feedback in their joints and bones, they aren’t getting the calming influence and awareness that comes to most kids normally through their proprioceptive system. And so the problems just compound. This is my bare-bones, beginning of a lay persons understanding of Sensory Processing Disorder.
We are almost three months post-SPD diagnosis. We have attending weekly OT sessions where Josh will play games (small motor skills) on swinging platforms and crawl across ball pits and other such stuff. We also have been using a surgical type of brush on Josh’s limbs and back, hands and feet, 2-3 times daily, to give him a deep level of sensory input, and then following up with joint compression, to provide some of that proprioceptive input. Finally, we have simply been much more conscious of getting off our own rather slothful backsides (okay, well this might be too hard–but Chris and I both like to read ALOT. Although Chris will run and I will do yoga, apart from that, we both tend to prefer fairly sedentary mental activities) and get Josh active. Chris and Josh race around the house at night now, and wrestle in his bed. And I try to get Josh out for walks outside, weather permitting. And we will conquer the playground (one of Josh’s high-anxiety producing activities in the past so we avoided it) in the spring. And slowly, Josh is becoming more vocal at school, more willing to join in with the other kids. And he is talking more, moving more on his own, and he is eating a wider variety of food or at least trying some new things–still mostly crunchy things–but generally more adventurous with his food choices. I think it is all because of a little brush, along with his parents now understanding his hardships in just doing basic, everyday activities that we take for granted (we thought he was just being a defiant kid). A few weeks ago, I told Chris that this $ 0.75 brush was having a greater impact on Josh’s development (possibly even language) than his $6,000 hearing aids. Now over time, this won’t be the case. But we are excited about the changes. And I have thrown myself into learning all I can about sensory processing disorder, because it seems yoga could help. And I want to help other kids through my yoga training, if I can. And continue to help Josh. Although it seems like still a very developing science, I think it is bringing about results for kids who may have been just dismissed as emotionally and behaviorally disturbed in the past. I told one friend that the whole brushing thing seemed a little like voodoo to me but, hey, if it is working, who cares.
Thank you Mignon, SLP, for getting me to Jackie, OT. You two have changed our lives for the better!