Friday, June 1, 2012

Sensory Integration

This story begins with the developmental pediatrician, a doctor that I didn't know if I should bother with. After you've seen a dozen doctors, most of whom are not really helpful at all, you really have to question whether or not to add another doctor to the list! Despite that, I decided to pursue it. There were a couple of people on the Kabuki group who said that a developmental pediatrician was their most important ally and that was enough for me to give it a try.

I wasn't sure what to expect from the appointment. I went over a brief history and after that the doctor spent about thirty minutes just observing Juliana. Several times he asked what we were doing in OT and several times I told him. Finally he told me that we needed to do much more sensory work because he thought that Juliana was having some issues with sensory integration. This really made sense to me in retrospect; there are a number of little sensory-seeking or avoidance behaviors that Juliana has. To anyone not familiar with sensory issues these behaviors would just look like little quirks. For Juliana these sensory issues have manifested themselves in a variety of ways: oral aversion turned into rabid oral seeking, not being able to sit still, often being discontent even when being held, crying when things got a little bumpy (such as when riding in the car), practically falling over because she was so overwhelmed when David walked into the room, almost always clasping her hands together, not being able to separate from me *at all.*

The doctor set us up with 'the best' OT who specializes in sensory integration. He warned me that it wouldn't be cheap and that I should consider it an investment. I told him that was fine, I was interested in the best,  please give me the best. (There seems to be a running rule that the best therapists don't file insurance, are out-of-network, and they certainly don't accept Medicaid).

It's now been about six weeks since we began seeing the new OT. I was very quickly hooked! During our first visit she spent two hours with us and during most of this time she explained the senses. There are actually two senses beyond the five senses that everyone knows about (and neither of these is seeing dead people - ha, ha). These two senses are Proprioception and Vestibular:
Proprioception refers to the way your body communicates with your joints, tendons, and muscles. When your proprioception system is working properly you know when you have bent down, when you stretch your arms, and basically where you are in the space around you and internally. You know all this without having to look so you can close your eyes and bend your arm and know where it is. This is what the police officer is checking for when he asks you to put your finger on your nose. If your drunk, you can’t do that very well—the alcohol alters your sense of proprioception.
Vestibular is the last of the senses that many people are not familiar with but experience every single day. The vestibular sense refers to a person’s sense of balance and movement. It has a lot to do with your ear—so if you have an ear infection you become acutely aware of your vestibular system. We are all born with an innate knowledge of gravity because of our ears. Certain parts of the human ear tell the brain that a person is standing upright, upside down, or on his or her side. 
Having the sensory system up and running correctly is really vital for obtaining new skills. Just imagine how difficult it would be to learn how to crawl if you weren't aware of your limbs.

You can read more about the senses here.

Our new therapist is not only very knowledgeable but is also very passionate about what she is doing. (And I don't know how she does it - I feel tired just thinking about what she does all day long!) So far she has taken good care of us. When we first began these new therapy sessions I had a short list of areas were I would like to see improvement: I'd like to see Juliana tolerate her PT sessions, I would love it if Juliana had less anxiety when I leave the room, I would like to figure out how to meet her sensory needs so that she does not feel so compelled to try to mouth everything in sight, especially things like grass or leaves. Since we've begun OT there have been improvements in all of these areas and then some. 

We actually received an amazing report from the OT this past week. Each week so far she has been excited by the improvements that she has seen. This past week she said that Juliana's social, emotional and cognitive skills are mostly at an age-appropriate level. Yes, her motor skills are really lagging. But the OT really emphasized that we are still in such a good place!

All of this OT fits in very nicely with the therapy that we're already doing at home. My hope is that by the end of the year I will be able to handle most of Juliana's therapy on my own. That's what I am gearing up for now. I am creating our own therapy room and I am devouring resources. I am trying to observe sessions as best as I can so that I can learn some of the tricks of the trade. 

Does sensory integration sound like something that your child struggles with? There are a number of excellent books on the topic. You may or may not find a developmental pediatrician helpful. You almost certainly would benefit from an OT who really knows sensory processing; but a really good therapist can be hard to find and, at least in my experience, has a high price tag. It's my belief that a neurodevelopmental program will also help tremendously (and it is far cheaper in the long run!). If your child is young a good place to being is with the (poorly titled) book How Smart Is Your Baby? If your child is older, look for a neurodevelopmentalist in your area and also check out NACD and IAHP. Last but not least you almost certainly need dietary intervention

We've done all of the above - and we're seeing results!


  1. GREAT INFO! and great news for J! :) progress in all areas! whoo hoo! making notes as you go along and we get ready for our own OT adventures.

  2. Have you started to do any rolling with Juliana? It's been great for Sophie. We also do silly things like give her a "boatride" in her bathtub each night (her Daddy carries it around and "flies" it up and down, and around in circles with her in it), plus we have a little scooter board that we drag her around on. I'm guessing your OT will be giving you all these suggestions but thought I'd mention these things just in case. Sounds like Juliana and Sophie may be quite similar - Sophie is age appropriate for social, emotional and cognitive aspects - but not for fine and gross motor...I love reading your updates keep them coming!

    1. Yes, we do rolling with her and she is CRAZY about it! If she sees the blanket that we use for it she will immediately flop over and grin. She totally craves the vestibular stuff. I like the boatride idea!