Totally Sensational--Hallie and Sensory Processing Disorder

It's become clear to us, over time, that so many of Hallie's issues stem from her out of whack sensory system. Even though I've read, re-read, and re-re-read The Out of Sync Child, I must admit that I remain a bit baffled by how Sensory Processing Disorder and precisely how it works to impede things like fluid communication and socialization (things like eye contact, playing well with others, conversational skills); gross motor movement (like running and jumping and walking); fine motor skills (like bilateral hand use); and eating. Here is a not bad description of sensory processing disorder for those who want to read more about this.

What I do understand is this: Hallie is under-responsive to some kinds of sensory stimuli, like those involving touch and vestibular movement, and hence craves sensation (in other words, she is a sensory seeker) to get enough information to negotiate the world well. Here are a couple of easy examples: she walks and runs with a heavy foot not only because she is low tone and unable to walk and run in any other way (although she is low tone and this complicates matters further) but also because walking and running in this way gives her nerves (and sends her brain signals) the information that she needs and craves. It looks funny and it may put some undue pressure on her joints and growing limbs, but it also helps her organize herself better. Another example: Hallie likes to bury herself in things and pour things on herself---these things can be pillows, lego bricks, balls, stuffed animals, whatever. Whenever she needs to calm down, this is what she does to help regulate herself.

Hallie is also over-responsive to some other kinds of stimuli. She is a visual learner and her visual sense is a bit over-responsive. What this means is that she is easily distracted by the things that she sees--whether that's the television (a big distraction for her) or things going on in other parts of the playground, or people and animals walking down the block. She sees these things out of the corner of her eyes and is forced by her sensory system to turn around and look or to run off in the direction of these stimuli. This can be a major problem, since it often means that Hallie is constantly turning her head to the side and looking over her back when walking down the street (which leads to falling, banging into things, and not paying attention to the things that she needs to heed, like oncoming vehicles) and it also can interfere with the learning process (like not being able to listen to a teacher during storytime because something else in the room catches her eye).

What we need to do as parents is figure out how to provide her with the stimulation that she requires to receive and process information in a way that doesn't get in the way of learning, safety, and other good things like that. We've been working in Floortime/DIR and OT on these skills and I have to say that whatever we are doing is beginning to work. I watch Hallie carefully to learn what helps, and what does not help, and then we try to do those things at home. At school, we'll have to work with OTs to design adaptations that allow her to retain focus (we hope that these are minor: things like placement in the classroom near the teacher and away from doors and windows where there might be more movement and consequently more visual and auditory distractions; having Hallie sit on sensory cushions that provide her with input; the use of weighted beanbag 'snakes' or stuff like that on her shoulders that help her keep still; fidgets for her hands, etc). And she may just need to get up and run around every now and then to regulate herself so that she can return to her desk and learn. All of these modifications need to be written into IEPs to make sure that everyone understands why she needs these things and how they function and so that her teachers don't just end up thinking that she is a flighty wild-child who doesn't sit still. But that's still in the future.

Back to the present: I noticed during Floortime/DIR this past week that Hallie adored the sensation of the smooth side of a Mondo Inside-Out Spiky Stretchy ball on her feet and hands and that she really grooved on walking on the spikey surface (on the outside--not the inside...that makes her very unhappy). So, like any good parent who thinks they might just open a sensory gym in the future, I went out and got her some (these join her collapsible tunnel, play-house, inflatable ball pit, and gym mat). The ones we ordered were a little smaller than the ones we used at therapy but she enjoyed them nonetheless:

Hallie asks for these all the time (they are a restricted toy since Hallie also finds the spikes irresistible as a biting item...the knobby chewy tube I just bought her and the long silicone chewy tube she received from her feeding therapist do not have the same caché for her, though Lea quite likes them). We hoped that having the spikey balls on her feet during meal time might help her eat more appropriately (in terms of quantity and in terms of not using her food as a sensory plaything) but no dice on this one, so far. Still, we're happy with this addition to our therapy tools/toy box and will probably get her some bigger ones if we see them around.

As I said earlier, Hallie has also devised a variety of ways of providing herself with sensory input that she needs in our (very small) house using everyday objects. She used to take out all of her stuffed animals and creatures and place them in the middle of our living room and roll around on top of them; then she moved to placing them on the couch (sometimes removing the couch cushions first), along with balls, and rolling around in these; then she decided to place them behind the couch and lie on top of them, sandwiched between the couch and the wall. I am particularly fond of this variant since it doesn't involve any cleaning up of toys at the end. I'll try to get a photo of this to post.

What I do have a picture of, though, is Hallie and Eliza Grace's reaction to pillows being piled on top of them on the big chair in the living room. One of the nice things about your child having speech and beginning to communicate is that she can tell you what she needs. On Friday night, after dinner, Hallie requested pillow piling. She built her new turn-taking skills into the process by directing us: "now Hallie turn!", "now Eliza turn!", "now Hallie turn!" , "now Eliza turn!" When the big pillows were equally distributed on top of the girls, the two of them kicked them off and hooted and smiled like crazy and then the process began again.

They were so happy after all that pillow-piling that they ended with a nice smoochy.

Anyway, Hallie doesn't just crave tactile stimulation but she also craves vestibular input--basically this is anything involving motion and balance and includes stuff like swinging (Hallie's favorite activity), jumping up and down, and spinning. That's why she loves fast rides, roller coasters, and the like. At home, Hallie enjoys piling the aforementioned pillows in front of the big chair and jumping off of the chair onto them.

At the playground, Hallie enjoys typical playground activities more than your average kid and certainly more than children who are over-responsive to sensory input (that would include me...I am pretty sure, after reading a lot about dysfunctional sensory processing that I am the opposite of Hallie in terms of sensory profiles. That's why I hate heights, fast motion, uncontrolled wheeled activities, and get dizzy very easily). Now that Hallie's body works better--her gross and fine motor skills are improving--she is much more effective at meeting these needs on the playground.

Hallie and Eliza had plenty of opportunity to get all the sensory input they craved at Smith Playground yesterday:

 

 

 

But their favorite activity was sliding down Smith's giant wooden slide:



They would have done this forever!

Even little Lea got in on the action at Smith Playground, even if she was a bit too young to enjoy the slide (actually, she would have enjoyed it; we just were not about to put her on a burlap sack and let her slide down what amounts to a giant bowling alley on a fairly steep incline):

 

And she also got to get in on the teeter totter action:

 

Anyway, a great day was had by all. After Eliza and Anne departed for New Jersey to visit Nana (Anne's mom and Eliza's grandmother), we headed home and rested (no nap for Hallie, alas) in preparation for the arrival of Hallie's PT. After seeing Hallie negotiate the playground with her friend Alex (who came to visit and dine with us yesterday evening), the PT decided that she had mis-assessed Hallie. Yes, Hallie is low-tone and, yes, her left side is weaker than her first. But she does jump with both feet off the ground and she runs funny because of her sensory stuff and not because she has too. Ditto with toe-walking. That's why it's called idiopathic toe-walking in her case. Her heels are tight and can use some stretching. But she can probably get away with something like a Sure Start shoe inserts or Polly Wogs rather than really extensive bracing/orthotics. That's a relief because Hallie, who is a bit of a shoe queen, would bristle at wearing extensive orthotics. We will have to buy her more supportive shoes, too, I think: she walks so much better in her Keens than she does in your average Stride Rite shoes, but we're happy to do this. Anyway, our appointment with the orthopedist is in a couple of weeks and we'll know more then. But we are feeling better about this based on what the PT saw yesterday.