Showing posts with label migraines. Show all posts
Showing posts with label migraines. Show all posts

Tuesday, June 10, 2014

WHISTLE NOSE...and other Sensory Processing Differences

Are you an Easy Whistle-Noser? A Vicious Whistle-Noser? Not sure? Read on to find out where you and yours might fit -- or have a fit -- in our corner of the Sensory Spectrum.

For some of the Full Spectrums, Sensory Processing Differences mean that sometimes we simply cannot process the whole package of sensory input in a given context -- or that we process it very, very slowly --  because one element is (or a few other elements are) overwhelming. In other words, the processing (registering, digesting, understanding) of one impression among a multitude – whether visual, auditory, aural, proprioceptive… -- utilizes all the energy we have available for that function in a given moment.

Sensory Processing Differences sometimes force or inspire us to get totally lost in the experience of what we are sensing. In some instances this can be to the detriment of “successful” interactions with the “normal” world; in some instances (sometimes the very same instances), this can result in extraordinary creativity and emotional bliss.

With Sensory Processing Differences, when we do (or taste or smell or see or feel…) certain things (or do/taste/smell/see/feel…too much of even non-triggering things) we get anxious, irritable, dazed, even sick (helloooo, migraines) because our neurology cannot prioritize or cope with sensory input in such a way that it is manageable. Further, we may not even NOTICE that we are anxious, irritable, dazed, sick…because we are processing something else.

Processing one or a few aspects of our sensory environment -- say, the presence of people, or people plus sounds – can preclude effective simultaneous processing of most other aspects, such as:
what we are thinking or feeling,
what we are learning,
what we see,
what we smell,
where our bodies are in space (proprioception, vestibular function),
what those people are saying or expressing in social cues

Later, we can sometimes put it together, in a sort of delayed processing process, if you will. In the moment? Too much.


Here are some examples of SPD in daily Full Spectrum life:


WHISTLE NOSE
Some of the Full Spectrums are Ultra-Norms in the sensory department: both Z and Pardner are neurotypical. This means, among other things, that they manage and process the sensory experiences of daily life with ease and aplomb – thoughtlessly, effortlessly... (It might be worth noting that all parties mentioned herein with Sensory Processing Differences (G, myself, Full Spectrum Grandmother) are biologically-related – and all those without SPDs are not.)

I once literally shocked Pardner by mentioning – casually, because to me this was obvious  – that sometimes in the night when I wake up I cannot go back to sleep because of the whistling sound my nose makes when slightly stuffed up. Rationally, I know it’s just a small noise that is coming from my breathing and that I should ignore it, but – trust me on this- I cannot, even as I know full well I am losing precious, precious sleep.



                                                             Figure I – Whistle Nose

“Whistle Nose” was the name we’d made up long ago for this phenomenon…a phenomenon which apparently had profoundly divergent meanings on the Sensory Processing Spectrum embodied between us. We were both totally surprised to discover after all these years that we’d each had very different feelings about Whistle Nose!

To Pardner, someone with “normal” sensory capabilities, Whistle Nose was simply something funny that happens sometimes. For me? Sure, there was potentially a somewhat humorous aspect to it, at least during designated waking hours. But, mostly, to this Highly Sensitive Person, Whistle Nose is a mild but pernicious form of torture that can actually adversely affect my quality of life.


SCHOOL
Where can I even begin with School? Even at its most pared down, there is just way, way too much going on in the classroom for my son G’s learning/academic brain to function anywhere close to optimally. How this manifests is in increased dysgraphia (writing issues, simplistically speaking) and dyspraxia (coordination challenges, ditto), decreased organization and intellectual progress, and highly awkward social interactions on his end.

Getting the “right” things to be background so that the important thing(s) can be in the foreground for healthy, efficient processing is a complicated and ongoing endeavor.

His Team and I have long agreed that the benefits of being in the classroom outweigh the negatives (another post…), but it bears inclusion in this post because pretty much anyone with SPD is going to find any institutional setting – such as a store, or an office, not to mention school – challenging. Knowing this, we can at least investigate ways to improve and/or modify such common yet impactful situations.


SMALL WINDOW OF COMFORT
Full Spectrum Grandmother uses this phrase to describe herself, and it resonates for G and me as well. Before we learned about SPDs it was a helpful, slightly jokey way to convey to others that she – like certain other Full Spectrums – is intensely affected by her environment. One area of sensitivity has always been temperature, and Full Spectrum Grandmother has been known to alternate air conditioning with extra socks and sweaters in her ongoing attempt to find her “just right” temperature. Just last weekend, she told me she was having a challenging time figuring out where to stand in the back yard:  “In the sun, it’s too hot; in the shade-too cold!”

We get it. We are the ones trying to get comfortable over here while you move back and forth in the grass, Full Spectrum Grandmother. Really, for many of we Full Spectrums, any number of sensory impressions can preoccupy, consume, even injure, us. (See: G with visuals and auditory; Mama with, oh, just about anything, but especially light and artificial scents…)

Textures and tightness are another Window of Comfort concern for Full Spectrum Grandmother. Things that are too tight can make it hard to focus; things that are too loose can be dysregulating as well. Rough textures can, in effect, abrade the brain; soft can feel disconcertingly – and distractingly -  slimy…



                                             Figure II – Small Window of Comfort Spectrum

Trivial? Maybe to someone whose brain doesn’t red-alert things like temperature, texture and fit so that they occupy the neural vanguard of one’s existence to the exclusion of much else!


ALEXITHYMIA
In our particular Autism Spectrum chunk live two people with extremely advanced verbal skills and the verbal processing ability of two hunks of cheese. Alexithymia is defined as difficulties in perceiving, defining and expressing emotions; and although we may not exactly fit some of the clinical definition (impaired creativity? Au contraire.), it’s in many ways a good name for what we experience.

Whoohoo! There is a word for this!

For some, alexithymia is permanent; for us, it is mostly situational and sometimes temporary – but always a challenge. For example, both G and I are extremely sensitive and are prone to having a feeling. When we get that feeling maybe we will be shaking or crying or angry – but we cannot explain what the feeling is and/or why we are having it at that moment. One very important repercussion: we cannot “justify” that feeling to others, especially the person (or persons) associated therewith. This can feel very destabilizing and unfair. We know we are having an emotion, but that emotion PLUS OTHER STUFF (people, words…) equals far too much to make sense of at once, never mind hold our own in interaction.

One problem with this scenario is that people often will want to talk about things as they occur -- which is not generally something that we would be able to do with clarity in that moment!

After we have plenty of time and space to PROCESS what happened, we can usually (not always) give a cogent explanation both of what the feeling was and why we were having that feeling in that context. If people are willing to wait, this is when we might be able to explain ourselves and our reactions…for me, preferably in writing.

G is being raised in a family where it’s totally fine to cry, even when you don’t know why you are crying. I was raised in a WASPY family where nobody talked about their feelings. It took me a long time to realize that I was actually unable (vs. disinclined) to talk about my feelings because they were too strong to understand in real time. There’s a big difference. WASPS may choose not to talk about feelings; alexithymia removes that choice.


This relates on a very basic level to SPD. Think of it like this: If I am listening to you -- and actually hearing and understanding you -- I am probably not looking at you (or at least truly seeing you). If I have a big feeling about our interaction while I am listening to you, unless the understanding of this feeling is given the neurological front seat (which is not under my control in that moment, and so unlikely), it may just look like I am dazed…or barely holding my own in conversation…I may seem very upset (possibly for unclear reasons) or I may seem just fine. I will probably remember every word you said because of a different neurological quirk (eidetic memory) – and that’s good, because the real impact/import of our interaction will for me only emerge over time. 

G and I – not always but a lot of the time and most assuredly when feelings are strong – do not essentially “know” what we are feeling until after the fact.  For us, alexithymia is inextricably linked to SPD. G and his generation, as people growing up with more awareness around SPDs, will have a lot more in their toolboxes to develop self-awareness, moderation and expression than older generations. At the same time, this growing awareness has – I hope -- enabled many of us to feel more comfortable saying stuff like, “I can’t fully process this right now. I will get back to you about it later.”



Is that enough input? Probably! Just one last bit: Learning about Sensory Processing has brought us some relief, particularly through the use of Sensory Diets and Sensory Breaks. More good news: using these techniques and insights will probably bring subtle but pervasive benefits to your lives, not just your, you know, senses and processing. Once you know you are experiencing Sensory Processing Differences, there are a lot of general resources online, so I have just shared some of our sometimes-quirky personal solutions below.

1.      A Sensory Diet can be therapeutic and formal, or it can be a way of being more conscious and evaluative about how we move through our days. Regulating and actively engaging with what you and/or your child consume/experience through your environment, even just a fraction of the time, can be super helpful. This may mean small steps like avoiding the cleaning products aisle at big box stores – or avoiding big box stores (the lights! aaaaaaaack!) altogether when possible. It may mean finding new ways to introduce your child or yourself to new textures and tastes -- or it may mean finding ways to get the nutrition you need without exposing yourself or your child to edible agony. It may – may! - even ultimately mean transcending food-related sensory challenges by being really smart and lucky about your overall sensory diet over time! It may manifest as it does for us in planning plenty of down time on the weekends – and being emotionally prepared for those frequent days when we cannot avoid doing too much.

Setting boundaries on what you do and where you go can feel burdensome, but it feels less so when you realize that you are actually able to enjoy, process and integrate what you do do.

2.      There is little a real Sensory Break cannot soothe, if one is available. The key is having the wherewithal (a small patch of uncluttered mental space?!) to REMEMBER to take that Sensory Break – or to offer one to your child or someone else you know who needs one! (My dear friend Rachel Cohen-Rottenberg introduced me to this concept and I will forever be grateful.) Many schools now have Sensory Break Rooms. Some kids might need intense movement or “arousing” activities, others, complete silence and darkness or “calming” activities…I’m not crazy about labels like “under-reactive,” over-reactive,” etc., but you can figure out what works for you and yours with creative experimentation.


For adults and children, that key ingredient of a good Sensory Diet – the Sensory Break -- can be as simple as going to the nearest bathroom (or even closet), closing the door, covering your eyes and ears with your fingers and taking deep breaths. Please, in the name of all that is holy, let there not be an air freshener in the bathroom. And, thank you in advance, dear universe, if it is not too much to ask, no Whistle Nose.


Love,
Full Spectrum Mama




Friday, July 13, 2012

A Petite Follow-Up Spectrum


Ah, summer: that special time when school is out and those of us who are primary caregivers to young children and who either cannot afford to send them to camp all summer or choose not to (or both) find ourselves faced with long days full of endless possibilities of a nonetheless limited sort. The luxury of choosing to be at home with the children during the summer is not one I have during the school year, and its result for now is a piquant combination of gratitude and exhaustion.

The other morning, Pardner was about to leave the house for a fourteen-hour day that would start at the farmers’ market and end with restaurant cleanup. He asked me what my plans for the day were.

I pictured the day ahead of us – a minefield of possible tantrums and stomach upsets for starters, the dull hours of the “I have nothing to do” chorus, the sweet and cherished snuggles, unexpected giggles and opportunities (responsibilities) to create memories of a carefree, wonderful childhood.

“Well, we’ll probably head to the farmers’ market later and we do have some parties to go to...” I ventured.

“Must be nice,” he chuckled.

“Well, if you must know, I might like to do some writing for my much-neglected blog or tackle my course prep or practice yoga or take a nice long run or even sit in the hammock and read a book while eating bonbons today but those things are not among my options,” I retorted, somewhat defensively…

At said farmers’ market I ran into a girlfriend who was there with her “surprise” child – conceived while she was on birth control in her early forties and her two daughters were in their early tweens and her life had begun to free up. I told her about the above exchange and she laughed heartily, resignedly, only slightly bitterly…

Some school-less days, we spend the whole day looking forward to that treasured half hour after the kids are in bed, that bit of time we have to ourselves before we pass out. In summertime, official bedtimes stretch out -- for us, 7 and 8pm become 9 and 10 and later.

And then sometimes, as soon as they are in bed, we miss them! Right?

That said, here’s what I currently am able to offer, given my summery circumstances: a petite follow-up spectrum to selected past posts:


“Tommy” (from “Would you rather…I”)
I found out that I was right: Tommy’s elderly mother did pass away and he did have to move. However, he didn’t have to go too far: he was taken in by his Aunt, who lives closer to the center of our small town. He has brothers who are very devoted to him in the neighborhood to boot! He now strolls happily with his walking stick around the town square, which has been called one of the most lovely in New England.


Figure I: The Empty House up the street, which was Tommy’s home. It is no longer quite so sad to see.

Tripping/Boundaries (Toilets)/Diet/Diarrhea

We have been gluten and casein free for over a month.



Those of us with weak stomachs still have ‘em – G’s is about the same and mine is noticeably worse. Migraines? Worse. Red mask-like skin? Worse. Reflux?  Worse.

Compensatory eating has also become a factor, insofar as we resent not eating certain foods and those substitute items we do eat are generally awful (so naturally we need to eat more of them).


I understand, though, that this process can take at least three months, so we are sticking with it for now. As for the fake-gluten and fake-dairy items- avast ye terrible products (with a few notable exceptions, such as GLOW cookies). I wager it’s time to focus entirely on whole foods, not wheat/dairy replacements.  I also wager we ultimately will end up moving toward a diet much lower in wheat and dairy, much as we did with soy after Mothering magazine published a damning article about soy in 2004 (and we realized we were eating 6-8 servings a day of soy!).*

It being summer, we have ventured a few perhaps ill-advised jaunts to visit the ocean and family. Restaurants are pretty much out of the question since the only vegetarian item ever available for kids seems to be macaroni and cheese. Mac and cheese seems to hold great desirability and nostalgia for G in particular: “Remember when we used to eat maccy?” he recently asked with a tear, subsequently admitting that our “adventure” with this GFCF diet has been “really, really hard.” I wondered aloud if Z felt the same, and was met with a sheepish, sad nod. That kind of suffering seems hard to justify without any surety around whether a GFCF diet is a solution for us; still, we will go the three-plus months needed for a clear indication.

I used to feel sorry for servers who have to deal with “picky” people at their tables. Now my feelings are more mixed, knowing, as I do, how hard it is for families with possible intolerances who are trying to have a rare treat: a nice, non-depressing meal out with their kids.

If, for instance, after close perusal we find that the only vegetarian, gluten free, casein free item on a menu is a frittata with potato crust and then are told, “Oh no, we don’t have that today, we only have the bacon-cheddar quiche,” are we, Full spectrum Mama, justified in going into a fugue state?

Also, we are coping with G’s anxiety around driving anywhere further away than 20 minutes. I don’t want car travel to become a phobia for him, so we have a policy now of stopping as often as he even suspects he might need to go. Two hour trips can turn quickly to four, but then again he only needed to stop twice en route to Cleveland (ten hours). Go figure. I cannot decipher if there is any correlation with any particular types of the limited foods we are still eating.

The other day I was reading The Autism Revolution (not entirely uncritically) during my lunch and I found out that several factors in G’s life -- including birth by C-section, being gestated by a mother with an autoimmune disorder and antibiotic use during the first month of his life (in the NICU) -- may be affiliated with compromised immunity, increased inflammation and allergies, and, finally, autism.

A few minutes later I checked my email and my beloved cousin, Loon, had sent me a link to “Tending the Body’s Microbial Garden,” by Carl Zimmer
(http://www.nytimes.com/2012/06/19/science/studies-of-human-microbiome-yield-new-insights.html?_r=1&emc=eta1), which basically makes very similar points. For instance, Zimmer describes how vaginal chemistry changes during pregnancy so that when babies pass through the birth canal they are coated with and ingest Lactobacillus johnsonii, thereby promoting a healthy immune system through the skin and facilitating digestion. Babies born by C-section do not receive these benefits. While we may take some steps to improve the health and population of gut bugs, baseline gut health is set to some degree during the first month of life.

I resolved to learn more about which foods and supplements might be at least somewhat helpful, and to at least try to reset our baselines! Zimmer’s article, however, questions the efficacy of currently available probiotics and discusses the emerging field of fecal transplants as an increasingly accepted procedure in the medical field.

So I was telling Pardner about all this reading…and he began to look increasingly uncomfortable. As it began to dawn on me that he apparently suspected I might be contemplating something rather “out there,” I decided to take this very concept – which, actually, up to that moment, had not occurred to me -- and roll with it:






Figure II: Horror, dread, incredulousness: Pardner, at the very moment I suggested he place some of his excrement in capsules for G and me to use as suppositories in a sort of “at-home fecal transplant,” since, “after all, I am a doctor!” **

“You need help!”/ I need help!

I am raring at the bit to try out my handy new phrase, “I need to find a way to get us out of this trap,” which was offered by a dear friend in response to my overuse of “You need help.” Of course, Z has chosen the last few weeks to be a shining beacon of peace with sporadic detours into insta-mega-tantrums far too shattering to bow in the face of gentle words. It’s as if she can sense when I feel I have our situation somewhat under control and is able, however briefly and incompletely, to relax and/or sidestep my handy new tools. Smartypants.


Bike Riding
It is with profound ambivalence that I share with you the news that G is now at long last able to ride his bike. He himself is jubilant and wants to go faster and faster!

However, the question remains as to whether or not he should ride a bike. That is, he is able to balance and peddle, yes. Other stuff, like stopping the bike, turning, riding on the proper side of the road and listening for cars remains elusive.

Paying Attention
Yesterday, G said, “When you said that it sounded like you were upset.” What was wrong? Nothing! We-e-ell, maybe I was being simultaneously talked-at by two small persons, but otherwise I was FINE.

So he picked up on that tiny bit of irritation? Amazing, especially for what may have been the first time he has ever noticed such a thing.  Oh, happy (not even slightly persnickety) summer day!

Love,
Full Spectrum Mama

* I couldn’t find the article, "The Whole Soy Story, The Dark Side of America's Favorite Health Food," by Kaayla T. Daniel, in the Mothering archives, but I did find this response: http://www.foodrevolution.org/mothering.htm
** (of philosophy)