Thursday, January 31, 2013

The Ongoing Sensory Puzzle

For many months, from when Cohen was a baby and now again recently, I have wondered about sensory issues with him. When he was a baby, he didn't know how to regulate himself or calm himself down. He was always out in what we called "airplane mode" with his arms straight out waving around seemingly seeking input. We made great strides with his OT and things got way better.

Now, over the last few months, I have continued to wonder if he still has some of these sensory issues. He is a busy boy and I hear lots of "Oh, he's a boy, boys are busy" or "Yeah, my child is busy too". And yes, I definitely think that some of it is that he is just a boy who just has a lot of things to do. But sometimes it seems like a different kind of busy that is hard to explain.

When we went in to OT yesterday, she asked me where I thought we were at. I told her I was happy with how Cohen was doing overall but that I was still struggling with knowing the difference between a regularly busy baby and one who was busy but there seemed to be something else going on. I told her how he will sit in his swing for hours perfectly content. He also still likes to be in his crib in the dark or in contained places. She suggested that he may still in fact have some problems with his vestibular system.

The vestibular system  "contributes to balance in most mammals and to the sense of spatial orientation, is the sensory system that provides the leading contribution about movement and sense of balance." (From Wikipedia). We have suspected for awhile that Cohen may be having issues with this and we decided that he probably still is. This would explain why he took so long to walk when we felt he had the ability to do it but was hesitating. It also explains why he walks so cautiously and only about 50% of the time. It also makes more sense why he hates being laid down to have his diaper changed or get dressed (yes, some of this is normal for a baby his age) but he fights us greatly as we lay him down. This also explains why he loves to be in his swing, he is upright and gets to have the sensory input. When Susan tried to lay him in a hammock to swing him, he acted panicked because he wasn't upright but at more of an angle or laying down. This vestibular system also is part of his sensory system and could explain why he seems to so constantly be seeking input. His little system isn't quite processing the movements and positions in space the way it should be. 

And of course, this all goes back to Cohen being a preemie. The vestibular system develops later on in pergnancy, after most preemies are already born. Add to that the constant stimulation of lights, noise, not getting the "squish time" inside, the tubes, wires, needles, etc and you have one overstimulated baby struggling to make sense of the world he isn't supposed to be in yet. 

The pieces just seemed to fall into place. There was something that just seemed off. Nothing overly dramatic, but just different. I felt validated when Susan acknowledged that yes, he does seem to have these lingering vestibular/sensory problems. It's nothing that can't be fixed and most likely won't be lifelong. Just one of those preemie things, I suppose. 


  1. Thanks for sharing! We struggle with the same worries about what is "busy" and what is "sensory." Jack is always putting himself into containers and will stay in his crib for hours without complaint (when he is supposed to be napping). He can't sit still, but will if in a small chair (containment, again) or if squished by my legs. He does better at home, because he's comfortable...but in a big open room/new space...he's on the go, running in circles...and then might put his head to the floor and "wheelbarrow" himself around?!? Some of it I know is "typical," but other things...I'm not so sure. Keep us updated on the tips and such that help with the vestibular stim. Thanks!!

    1. Heather, that sounds a lot like Cohen!! He is way more comfortable at home, but when we take him other places he just has no idea what to do with himself. He likes to be in his crib, carseat, stroller and swing, I think he would sit in those for hours if we let him. Even at home though it seems like he just can't focus on anything and is constantly moving from one thing to the next (I know, part of the age, but also feels "different" again). We are starting to work on a few things with our OT so I will keep you posted! Thanks for sharing :)

  2. Thanks for writing about this. These subtle things seem like the hardest to get help with. Virginia had severe sensory stuff going on in the NICU that its always in the back of my mind now. Like Cohen she has been very cautious around major developmental milestones. It seems partially sensory and partially motor planning. Please keep us updated with his OT strategies.

  3. This has a lot of similarities to my son, a former 24 weeker... Therapeutic Listening, specifically Vital Sounds cd's, have made huge differences for him and his twin sister! Please email me or find me on Facebook if you would like more

  4. I worry about this with Tiny as well. Even though she is catching up, there are still things that she does or does not do that make me worry there are some lingering issues from being so small and growth restricted. And having been the donor, you wonder what the long term affects of not receiving all she needed while in the womb. I didn't know about the vestibular issues, but all that sounds very familiar... may have to look into it more!

  5. Cade is very much like that too. It's more than being a busy boy. He constantly seeks sensory input too.