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

An InLinkz Link-up

Springtime at the Orphanage

Tra la la…”Sweet lovers love the spring…”*

Tra la…

Let’s see…

This time last year, we were in discussions about a possible 504 Plan** for Z. The year before that, we sought attachment-disorder-specific therapy for a situation that was spiraling out of control – and out of the range of bearable.

This spring we are facing a renewed cycle of tantrums and other behaviors, many of which have lain dormant since as long ago as, well, last spring. I’ve had to write Z’s teacher several times explaining that she had not had breakfast due to a meltdown; now I know to pack extra snacks – stuff like that.

While Z sometimes says things she intends to be very hurtful (a wee bit embarrassingly for all, these things often seem funny to adults in the vicinity: “You stupid poopoo mother I will hate you forever and kill you With! This! Doll! And then I will never! Ever! Eat the BAD, DUMB dinner you cook again!”), she more often proceeds directly to the pre-verbal, with growls, shouts, kicks and screams prevailing.  We’ve come to understand that this regressive behavior demonstrates Z’s ongoing need to be nurtured as (if she were still) a baby.

The cycle of the seasons clearly has deep meaning for Z.  The merry infant who smiled back at us from her taken-in-February referral photo had, by the time we arrived in China in July (this was as fast as the process allowed) to bring her home, seen and felt things no child should endure. I cannot say whether Z endured any definite abuse. We were not allowed to enter the orphanage in Fuzhou (Jiangxi province). Certainly there was a significant level of neglect, and, judging by how skinny Z was -- and how voracious – a bona fide shortage of food.

Z’s orphanage experiences are still reverberating in her body and mind in ways unfathomable to those of us who at the very least had adequate food and some constant presence in our infancies.

Sure, we’d all like to have been loved unconditionally and to have known we came first to our parents and maybe some of us didn’t get that and yeah, that sucks. No, it really does. And we - some of us - do have cavernous, terrible, enduring holes inside where that love should have gone. But anyone privileged enough to be reading (or writing) this blog probably had their most basic needs met. Z didn’t. She’s traumatized. It comes out in the spring.

As the years have gone by and we have been able, with the help of our therapist, to identify this pattern, it has helped all of us feel less hopeless. It’s given us some context, rather than leaving us flailing in the dark as our family degenerates, seemingly out of the blue. I can say to Z, “Springtime is sometimes hard for you,” and that might let her know both that she is accepted and that this, too, shall pass.

We are not alone in having a child who hits a rough patch in the spring (or in some other cyclical context). Whether through embodied trauma, allergies, transitions…certain times of the year can trigger strong, often unhealthy behaviors and feelings.

This spring, partially to address these issues and partly because we’ve put our house on the market, we embarked on The Deep Cleaning of the Bedrooms. While each child cleans his or her room weekly, with some help from Mama, this was a whole different endeavor. I swear, between recycling and straight up trash I hauled several hefty bags out of each child’s room.

G’s room was a giant mess, but Z’s room was a project. A certain kind of masterpiece, actually. Millions of tiny twists of paper had been squirreled away in every possible crevice. There were a lot of unfamiliar (to me, anyway) toys, and pieces of candy and candy wrappers and Oreos (Oreos??!) in hidey-holes and in bags within bags (whenever I come across a snazzy second hand purse or am given one, it goes straight to Z). 

Progressing from irritation to wonder, and back and forth again, I stood in awe at the complexity and skill of Z’s hoarding.

When we were done (after many, many sensory breaks for all) and we’d dealt with the garbage and recycled the recycling, Z was as happy as I’ve ever seen her. You could actually see how light she felt, how purged. Without prompting, she expressed her desire to “be really peaceful all the time now!” and to “draw instead of ripping and hiding things!”

Nice ideas. Let’s hope they work, at least a little. Spring cleaning is traditional in many cultures and maybe there is a deeper source to this impulse than just the practical, cleaning-cleaning part.

In any case, I do believe we will aim for a Deep cleaning every Spring from here on in.

I’ve always suspected that when parents try to correct for the wrongs done them by their parents they probably will be causing equal yet opposite forms of wrongs to their own children. Butanyway, I try to work on the heart level too, because my generation is big on endowing our children with unconditional love.

Sometimes we have this exchange, which both children find quite boring:

FSM: “Do you know what is the most important thing on earth to me?”

Children: “We are.” (Ho Hum.)

FSM: “Do I love you completely in every way no matter how you act?”
Children: “Yeeees.” (With ennui.)

FSM: “What do I think you are?”
Children: “Marvels.”

Marvels! The great cellist Pablo Casals said this about children:

Each second we live is a new and unique moment of the universe, a moment that will never be again. And what do we teach our children? We teach them that two and two make four, and that Paris is the capital of France. When will we also teach them what they are? We should say to each of them: Do you know what you are? You are a marvel. You are unique. In all the years that have passed, there has never been another child like you. Your legs, your arms, your clever fingers, the way you move. You may become a Shakespeare, a Michelangelo, a Beethoven. You have the capacity for anything. Yes, you are a marvel. And when you grow up, can you then harm another who is, like you, a marvel? You must work, we must all work, to make the world worthy of its children.

Pablo Casals (1876 - 1973)***

Springtime at the Orphanage might’ve been terrible, but, here, it’s got marvels too.

Love,

Full Spectrum Mama

* "It Was a Lover and His Lass"

BY WILLIAM SHAKESPEARE

It was a lover and his lass,

   With a hey, and a ho, and a hey nonino,

That o’er the green cornfield did pass,

   In springtime, the only pretty ring time,

When birds do sing, hey ding a ding, ding;

Sweet lovers love the spring.

Between the acres of the rye,

   With a hey, and a ho, and a hey nonino,

Those pretty country folks would lie,

   In springtime, the only pretty ring time,

When birds do sing, hey ding a ding, ding;

Sweet lovers love the spring.

This carol they began that hour,

   With a hey, and a ho, and a hey nonino,

How that a life was but a flower

   In springtime, the only pretty ring time,

When birds do sing, hey ding a ding, ding;

Sweet lovers love the spring.

And therefore take the present time,

   With a hey, and a ho, and a hey nonino,

For love is crownèd with the prime

   In springtime, the only pretty ring time,

When birds do sing, hey ding a ding, ding;

Sweet lovers love the spring.

** 504 Plans relate to a wide range of “impairments” to learning, the variety of which may or may not fall under “Special Education” criteria. Z’s disruptive classroom behavior -- which stemmed from her attachment disorder -- was impairing her ability to learn as well as disturbing her teacher and fellow students.

Here is a good definition of a 504 Plan from http://specialchildren.about.com/od/504s/f/504faq1.htm :

Question: What Is a 504 Plan?

Answer: The "504" in "504 plan" refers to Section 504 of the Rehabilitation Act and the Americans with Disabilities Act, which specifies that no one with a disability can be excluded from participating in federally funded programs or activities, including elementary, secondary or postsecondary schooling. "Disability" in this context refers to a "physical or mental impairment which substantially limits one or more major life activities." This can include physical impairments; illnesses or injuries; communicable diseases; chronic conditions like asthma, allergies and diabetes; and learning problems. A 504 plan spells out the modifications and accommodations that will be needed for these students to have an opportunity perform at the same level as their peers, and might include such things as wheelchair ramps, blood sugar monitoring, an extra set of textbooks, a peanut-free lunch environment, home instruction, or a tape recorder or keyboard for taking notes.

*** http://blog.gaiam.com/quotes/authors/pablo-casals/55416