Tightrope Pt. 3E; sensory integration

Many of his perceptions are now more sensitive than they used to be -- which means that his internal alarms are being tripped more often -- which means that he is in a state of arousal more often, poised unconsciously for fight or flight. I wouldn't be surprised if this were related to his blood pressure issues, & I am strongly convinced that this has something to do with the "labile" state attributed to brain surgery patients. Naturally you are going to be more "labile" if your brain is sending you constant little alarms about sensory input that is outside your new comfort zone. (The good news is that this is likely to moderate in time, as his brain adapts to the changes -- especially since he is dealing with it consciously.)

A young man of my acquaintance had what seemed to be a filthy temper. He seriously "over-reacted" to simple problems. However, it was determined that he had serious visual processing problems. After a course of vision therapy, he suddenly became a very mellow person. His "over-reaction" was to a problem that no observer could see. He was constantly tripping over things -- because they weren't exactly where he thought they were. He was constantly spilling things -- because the glass was not quite where he thought it was. Every moment of every day, simple things were going awry on him, for no reason he could understand. The constant frustration was responsible for his "filthy temper." People who thought he was "over-reacting" had no idea what he was reacting TO, & therefore, had no idea that his reaction was more appropriate than they realized. (From his point of view, inanimate objects were leaping into his path to trip him -- constantly. Nobody would like that. It would make anybody grumpy!)

I do not raise these issues to make you worry about your behavior. Most of the time, Chester has to sort this out in his own brain. I raise these issues because our being more conscious can occasionally be helpful to him. And in order to be more conscious, you have to understand what is going on, & ponder it a bit.

I have talked to parents of kids with ADHD -- many of whom are totally unaware of the sensory processing issues associated with ADHD. They will put the kid's t-shirt on in the morning, & he will complain about the scratchy label at the back of the neck. They will tell him not to be a sissy. He will complain that he doesn't want to wear THOSE shoes, & the parent will feel around inside & determine that nothing is out of the ordinary -- & put the shoes on him anyway. They send him to a classroom where his hyper-alert nose is assaulted by chemical cleaners, & his hyper-alert ears are bombarded by the noises of lots of people -- while his shoes irritate his feet & the label in the back of his t-shirt chews away at the back of his neck. And then they wonder why he is not paying attention when the teacher is talking about math. Well, he is already paying attention to too many other things -- things for which his brain is DEMANDING attention. He can't help it. (So I spend some time trying to convince parents that they should help as much as they can. A hard sell, when you can't see the problem. Would it kill you to cut the damned label out of the back of his t-shirt?)

Chester's sensory processing has been disrupted in a different way, & we have no way of knowing what he is perceiving. It is not really our job to figure it out, & he wouldn't expect or want us to. (He especially wouldn't want us all worrying about it all the time! There is no way you can be responsible for what he is sensing, & if HE is having trouble figuring it out, there is no way that you can! So don't obsess about it.) However, our consciousness might enable us to help him from time to time.

For example, I would never thrust a bottle of perfume under his nose, & ask him what he thinks of it; his olfactory sense is VERY sensitive these days. He doesn't need a strong whiff of anything. (He can probably smell it if you stand outside the door of his apartment!)

The women in my family have an annoying tendency to shove food at people, & expect them to eat it piping hot & in inappropriate quantities. My mother would flip out & get absurdly over-emotional if Chester sat around waiting for her meal to cool -- as though he were personally rejecting her. It is really easy to make unconscious value judgments about people who are experiencing a different sensory reality than you. (I have seen parents describe children as "too picky" as being "difficult" as being "a sissy." People can get way too emotionally involved in projecting meaning onto a situation.) If you cook Chester a hot meal & he doesn't eat it right away, he is just waiting for it to cool down into his comfort zone. It is not a big deal. Relax. Don't fuss & fret over it & try to figure out what it means -- don't leap up & offer to cook him a different meal. He is not dissing you or the food. (He will probably tell you this, but if he doesn't think of it, I am hoping that my saying it will help you to be more comfortable with it.)

If you take Chester somewhere where there are a lot of people, colors, noises, odors -- he is going to tire more quickly than he used to. And he may want some quiet time afterwards to calm his nervous system. I imagine this is one of the functions of the naps he takes -- quiet time in a familiar & comfortable space helps an overworked nervous system to calm down. In general, he can't filter out as much stimulus as he used to, & probably not as much as you can. Again, it is not a huge big deal -- I am not advocating that you get all freaked out about it & hover over him trying to fix it. (Hovering over him just becomes more stimulus to filter out!) But if he tells you he is tired, or that he needs a bit of quiet, I thought it might help to know what that is about. It doesn't mean that he is mad at somebody or not enjoying himself or any of those things that people worry about. It just means that he needs to reduce the incoming stimuli.

Fortunately, he is uncommonly self-aware, & he will most likely figure out what he needs on his own, & tell you about it. But your awareness can simplify that for him, in a few situations. I can't stress enough that I am not suggesting that you hover over him, asking if things are bothering him. Having somebody hover over you in a state of hyper-alertness could easily become another stressor. (If they rush you to the front of the line in the emergency room, that means that you are in deep doo-doo! Hyper-alertness in people around you is another thing that can trigger the state of arousal, since it is another danger signal.) I am advocating a state of relaxed awareness -- & not just for Chester. (I really do have a bee in my bonnet about this!)

We tend to interpret the behaviors of others through a filter of our own perceptions. (What other way do we have to do it?) It can help us in a lot of areas of life, if we can be aware that the other people are filtering their perceptions through radically different sensory apparatus.

This is one of the tight-ropes that Chester is now walking. His nervous system is trying to find a new equilibrium. The fundamental balance of his nervous system has been changed. It's not just about his sense of smell being more acute -- it is about a major reorganization in sensory processing...

Tightrope Pt. 3D; sensory integration

His tastes in food have changed. There is no way to sort out which sorts of cravings are responses to deficiencies in the body, & which are driven by changes in sensory processing, but sensory processing is certainly part of the equation.

His tolerance for hot & cold foods is reduced -- he often microwaves cold drinks for a few seconds to make them less cold, or lets hot food cool a bit before he eats it. (This is a change in his parameters for what is comfortable.)

Things like finding your balance to stand upright are also affected by your sensory system. Chester has complained of odd sensations in the right side of his body -- his right arm & leg are still sending him sensory information, but it is much changed from what it used to be. His balance is impaired by the physical inability of the right side of his body to adjust his posture, but also by the disruption of his previous sense of proprioception -- his sense of where his body is in space has been disrupted. (He occasionally loses track of his right hand.)

All of this means that life in general is harder work for him than it used to be. He may get tired more easily than he used to -- especially in highly stimulating situations where there are a lot of people, a lot of noises, etc. He has to work harder to filter out the unimportant stimuli. This work is invisible to other people present -- he is not always conscious of it himself.

It also means that he has to bring more of his sensory processing to consciousness, instead of letting it be handled unconsciously. An odor, for example, may bother him until he tracks it down, verifies what it is, & assures his brain that it is "not a problem." (Smells, after all, can be an important indicator of whether the meat is safe to eat, or whether the house is on fire, among other things. Any odor outside the brain's comfort zone could be an important warning. If you are conscious of more odors, you have to check for more potential dangers.)

Tightrope Pt. 3C; sensory integration

Say you are eating a nice, juicy hamburger. You may be enjoying the burger, but you are also attending to your spouse & instructing your children on proper restaurant behavior, perhaps, or admiring a nearby sex object, or thinking about a problem at work. Suddenly you bite down on a piece of bone. Suddenly, when your teeth connect with that bit of bone, the hamburger gets your undivided attention. Your brain instantly informs you that there is something very wrong with your hamburger. Perhaps you spit out the mouthful of food immediately, reflexively (impolitely, but hey, we are talking survival here!) This is a variation on the "flight" response -- getting away from the stimulus that falls outside your parameters for safety. Or perhaps you go to the cash register to raise hell -- a form of "fight" response. Perhaps you attempt to unobtrosively remove the bit of bone, verify that it is nothing more alarming, & stoicly continue to eat. (Our conscious mind & social conditioning inform our responses to sensory information.) But one way or another, your sensory apparatus trips an alarm, & you respond to it.

The brain has an AMAZING capacity to adapt. Back in the Dark Ages, when I was in college, Psychology classes used to study experiments in which subjects were fitted with glasses that inverted everything in the visual field. At first, the students were disoriented & could hardly function. But at some point, the brain figured out that it could flip the imates upright. After having the students go around like this for some time, the nasty researchers then took away the glasses -- & the students got disoriented all over again, & had to wait for their brain to flip the images back to normal. (And, in fact, this is part of the flexibility I was talking about. When conditions change, the brain adapts as a matter of survival. The brain determinedly struggles to wrestle meaning from the constant, overwhelming flow of data. And fortunately for us, the brain is pretty darned good at doing that.)

Now, Chester's brain has been through rather a lot in the past year or so. First the tumor came along & started disrupting the normal neurological patterns in his brain. And then the surgeon came along & caused even more changes. (While I don't know a lot about such things, it is quite possible that the scar tissue caused yet more changes, & I don't even want to speculate on what the chemo & radiation might have done. That is WAY too far outside my experience.) This has all, quite understandably, produced changes in the way he processes sensory information.

For example, he was going through a box of things from his previous apartment, & discovered that he can no longer tolerate the shampoo that he used to use. Its scent bothers him. He says that his sense of smell has become doglike in its intensity. For the most part, he seems to be comfortable with natural odors like sweat, although he has trouble with garbage smells, & asks his companion to take the trash out every night. He is having more trouble with chemical odors (so Dawn rewashed her clothes when she arrived, to remove the smell of the soap or fabric softener that was bothering him.) If you are going to visit him & are thinking about spritzing on a little something to improve your smell, he might prefer to smell your sweat. (His reactions to some odors may border on a mild allergic reaction. Allergies & sensory processing issues tend to run in the same families, & are related in some strange way I haven't figured out. When my son had a course of neurodevelopmental movement therapy to address his sensory processing issues, his food allergies/sensitivities also disappeared -- which his therapist claims is not uncommon... Nearly every book I read on ADD/autism made reference to allergies, & a naturopath I consulted described autism & allergy as different kinds of inflammation in the body... There is a relationship, even though I cannot yet adequately explain it.)

Tightrope Pt. 3B; sensory integration

There is so much sensory data coming in that we would totally lose our minds if our brains did not have a way to filter & prioritize it all. And indeed, many behavioral problems have their roots in a person's inability to filter sensory data appropriately. (See -- even I can get judgmental about it. But darn it, being different CAN be a problem in some situations!)

One of the thing that makes this filtering so difficult is that it must be flexible, to adapt to changing situations. If you are hiking through the jungle, & an ant starts crawling up your leg, it is a good thing to know about. (Some of those jungle ants can be quite nasty!) So your brain would appropriately register that tickle as something to check out.

However, if a tiger suddenly appears out of the bushes, that is no time to be worrying about the ant! Your life depends on focussing on the tiger. (And indeed, if you stop to brush the ant away, that movement will only attract the tiger! People with severe sensory processing issues cannot ignore the ant to deal with the tiger -- not good, no matter how non-judgmental you are trying to be!)

One of the things the brain does to help us filter the incoming sensory data is to set parameters for "safety" or "comfort." It ignores stimuli that fall within those safe/comfortable parameters when they are not of primary concern, & blares an alarm -- triggering the famous fight or flight response of song & story -- if the parameters are exceeded.

Tightrope Pt. 3A; sensory integration

You know your blog post is too long when it breaks the pipe...

I have been hesitating to post this, as I fear it will be too long & too boring. I have rather a bee in my bonnet on the subject of sensory integration, since several members of my family have problems in the ADD/autistic spectrum, & sensory integration issues are a big part of that equation. Actually, folks on the ADD/autistic spectrum & others with various learning disabilities are often labeled with "Sensory Integration Dysfunction." (Doctors who work in this area are so judgmental about what is "normal" & what is not! Being different is not always a bad thing. Poor Superman -- did you hear? He can see through WALLS! Isn't it awful?)

Anyway, it was clear to me during my visit that Chester has experienced some significant changes in sensory processing, & I wanted to share with you a bit of what I have learned about sensory processing over the years. (It really is germaine, if you can stand it.)

First of all, most of us are blissfully unaware of our own sensory processing. It is handled unconsciously much of the time. This is both the good news & the bad news -- because when you start to have problems with it, or experience changes in it, it is hard to figure out what the hell is going on.

We all have at least 5 senses (I won't argue about any others that may or may not exist), which are bombarding us CONSTANTLY with data about everything around us & inside us. Every single hair on your body is connected to a nerve that can register a touch or a tickle -- every bit of your skin is monitored by sensory nerves -- internal organs like the bowels & bladder are keeping you updated on their function. Your ears are constantly bombarded with noises, near & far, soft & loud, important & unimportant. Within your field of vision are more objects than you can really deal with at any given time. Everything around you is exhuding an odor, whether you are conscious of it or not. Everything you put in your mouth tickles a variety of taste-buds. We even have a nifty little ability called proprioception, which is our ability to monitor our body's position in space using feedback from the muscles, tendons, etc. (You can close your eyes, & still have a pretty good idea what your hands are doing -- because the nerves in the hands are constantly reporting to your brain. And when you tiptoe through your darkened bedroom -- proprioception is busy guiding you.)

Happy Beltane!

All is well as we welcome spring. Chester, Barbara and I did an improvised May Pole dance yesterday, all on wheels. Chester danced in his wheelchair, I scooted around on a massage stool and Barbara wove through us with a rickety shopping cart. She documented the whole thing and hopefully we'll have more for you from her once she gets home in New York.

Chester is feeling much better after the change in his medication. His dizziness is almost totally gone, so his walking and transferring are both much stronger. He now walks with confidence and grace, most of the time. Our work now will be spending more and more time out of the wheelchair- walking and standing more in the apartment and out in the community. As we do so, we will be guided by Prudence, who has been a good ally this past year.

Medi-Cal finally is active, so we are now through the entire process of getting Chester on Social Security Disability and Medi-Cal. Today when we went for blood tests we were able to give them the Medi-Cal card, which felt like a major victory! Now we can turn our attention to submitting receipts for medical expenses dated back as far as November and hope that many of them are reimbursed. With all of his medical expenses totalling in the several-hundred-thousand-dollar range, it is nice to know that from this point forward many of his medical expenses will be paid for by our dear government agencies. Of course, his disability income is laughably low, and Chester will continue to rely on the support of his community for subsistence and sushi.

May all of your May Day seeds flourish this spring. What ever it is you are sprouting, rooting, or pruning, may it be fed by the rich soil of friendship and the generous waters of love.