Friday, July 12, 2013

Speaking not just as the mom

I do occasionally post on this blog not just about food and wool, but about being the parent of children with a variety of special needs; medical, psychiatric, intellectual.  Having trained as a medical librarian, I also get involved in a lot of other families' needs when it comes to finding information.  Today, though, I'm writing about myself more than anyone else.

A new study has been published, showing a likely neurologic cause for sensory processing disorders.  Happily, it's been published in an online open access peer reviewed format, so we can all see the original report, as well as an analysis, and a public statement from The Sensory Processing Disorder Foundation.

What I do take issue with is the fact that the foundation only seems to have an interest in this disorder in children.  The fact is that it continues on into adulthood in many cases.  How do I know?  I live with it daily.

Touch for me invokes panic.  Loud noise, disorganized noise, chaotic noise gives me tunnel vision and an urge to flee.  Chaotic movement around me like in a large crowd makes me unable to focus or even just do what I've come to do.  Even driving can be more difficult for me daily simply because there are too many different sensory foci to process--the visual corner-of-the-eye, the auditory cues, the physical act of using the steering wheel and pedals, as well as conversation if there are others in the car, and so on.  I never knew until adulthood that others don't experience life as if it were hundreds of single snapshots a second, but rather smoothly and continuously (or so I am told).

I've learned to live with it, though adolescence was very hard (no one when I was a kid had ever heard of this, so my parents thought I was just being annoying when I seemed to lose my mind on long car trips shoved up against other people with their talking surrounding me and no possibility of respite).  I do my shopping when I think stores, malls, markets will be least busy.  I take the children to the pool on weekdays but never weekends.  I just plain don't go downtown.  I force myself to attend important ceremonies like graduations, awards, weddings, but I spend days beforehand in dread.

I'm lucky to have an extraordinarily understanding husband.  Imagine taking a spouse and only discovering over time that spouse can't stand the feeling of a brush of a hand, a lip, a hand holding.  I didn't know this until I was married and had the opportunity to find out, and you can imagine my poor husband certainly had no idea what he was in for.

I note with interest that the researchers attribute the problem to white matter balance in the brain, because when my son with dysgenesis corpus callosum and septo-optic dysplasia/optic nerve hypoplasia had a brain MRI, one thing that was noted which no neurologist then (about 12 years ago) could make anything of; they all agreed it was odd, but they didn't know what if anything it meant.  I have no idea if I have the same imbalance or not, but this would seem to suggest the answer is yes.

Recently other research has suggested a single genetic tie between bi-polar disorder, schizophrenia, autism, and other neurologically based disorders, which previously had all been considered to be caused by different psychiatric, developmental, and other roots.  Now this study shows a single physical abnormality correlating to a condition that's common in many people who do suffer from all of those different disorders.  

I hate having this problem, I would will it away in a moment given a genie in a bottle, but at least I'm living in a time of significant research and validation of the experience of those with hard-to-pin-down, formerly ignored neurologic experiences.


LCharvon said...

You are a very brave woman to speak such honesty. It must have been (be still) so difficult to parent with such an aversion to sensory stimulation. <3

amyrpk said...

Thanks for the evocative description of your reality, and from a purely selfish place, too, as you've given me a window into a piece of my son's reality.