Day 21: Questions

I'm glad we meet with the OT tomorrow, because I feel like we have as many questions as answers right now. I finished the first book we were recommended, "The Out of Sync Child" (I do have mad speed-reading skills), and though I feel like I learned a lot; about the nervous system and sensory processing, and specifically the ways in which it can go haywire (so to speak), I found that Simon fit into parts of multiple profiles.

I think that this can be attributed to the fact that Simon's Sensory Integration Disorder is "mixed" with the effects of the Cerebral Palsy. For example, according to the book - he displays symptoms  of "Hyposensitivity" and "Sensory Seeking Behaviors" and "Dyspraxia." These are listed as three separate issues in the text, but my theory is that Simon's inability to feel sensation as acutely as most (whether touch, taste, auditory, visual, vestibular, etc.) comes from the brain damage of the stroke, or, maybe even scar tissue from the brain surgery he had to place the shunt when he was 2 weeks old. I think that this lack of sensation then causes him behaviorally to seek out opportunities to feel things in a more dramatic way than most children (hanging upside down, squeezing, eating spicy food, etc.). However, I think that the Dyspraxia (loose tone, poor posture, clumsiness) is actually "just" the CP.

I'm pretty sure it ALL comes from the initial brain damage (and by ALL at this point I mean Cerebral Palsy with Hemiplegia and Cognitive Delay, Epilepsy, Hydrocephalus, Strabissmus, and Sensory Processing Disorder). So.. what difference does it make what we call it?

Sigh. That is the tired and slightly overwhelmed Laura talking. The reasonable, capable side of me is optimistic that, if we can identify a problem correctly we can treat it effectively, rather than simply put band-aids on things.

I am trying to imagine what we will do differently... How can we keep Simon stimulated and focused in an appropriate way so he can learn better? How can we make him aware of his own bodily functions so he will be able to tell us when he needs to use the bathroom in time? How can we prevent the drooling, and the gagging, and the staring spells...? HOW? I just don't know.

I suppose that is why I'm not an OT. Yet. By the time this kid's in second grade (God willing) I have a feeling I will have practically earned a degree. Though, maybe I should focus on Neurology.. I do have a pretty good vocabulary there and significant research developing on prenatal stroke and epilepsy...

Well, here's hoping all our tomorrows bring us some answers.

Good night for now, from a very tired Laura.