BOUNDARIES

“F*cked up people will try to tell you otherwise, but boundaries have nothing to do with whether you love someone or not. They are not judgments, punishments, or betrayals. They are a purely peaceable thing: the basic principles you identify for yourself that define the behaviors that you will tolerate from others, as well as the responses you will have to those behaviors. Boundaries teach people how to treat you and they teach you how to respect yourself.”

Cheryl Strayed

Dear Persons,

Boundaries keep us healthy.

Boundaries can be any shape (including partially open), thick, thin, obvious, subtle, situational, universal, expressed, internal, pleasing and convenient for others– or not, ordinary, extraordinary, permanent, flexible, temporary,...Boundaries can and should be of any type that promotes our health and healthy relationships. Boundaries consider and encompass ourselves and others as PERSONS.

Figure I – Visual Rendering of a Full Spectrum of Boundaries

A lack of boundaries finds an interesting overlap between neurodiverse people, who, for a variety of reasons, may be unaware of the possibility/necessity of certain boundaries, and unhealthy-to-toxic families, where vulnerable members (such as children, or, sometimes [and by no means only], women) may be abused or exploited partially because of weak or nonexistent boundaries in the family dynamic.

People who desire full health can learn about healthy boundaries and enact them. This can be challenging, especially at first, because new routines and behaviors always are (hello, transitions!), but also because sometimes others may take boundaries as a personal offense, or as selfish, or a burden.

Refer those chumps to the above quote. .

Basic well-being in life also embodies healthy boundaries (eating habits, personal safety, fitness...). For people who are highly sensitive, people with sensory processing differences, and people on the autism spectrum, among others, healthy boundaries may further include a diverse range of choices, such as:

* Not shopping at big box stores (this may hold, too, for people who have boundaries around consumption, or around economic ethics regarding working conditions of employees and/or manufacturers);

* Limiting the number of steps in any set of instructions, whether at school, work, or home;

* Allowing fidgets, pressure devices, what-have-you to be integrated in the classroom or workplace;

* Limiting or specifying social interaction;

* Avoiding fluorescent lighting, certain smells, loud noise, crowds....

* Finding mutually satisfying means of communication;

* Choosing clothing, food, etc. that does not hurt, distress, or irritate us;

* Deciding the conditions under which we will choose to share our unique circumstances and needs...

We have the inherent right to deduce and determine what feels safe, healthy, and appropriate in our lives. We can and should ask those who value our mutual health and relationships or who are charged with our wellness, working conditions, and/or education (and/or the education and/or care of our children!), to honor those boundaries.

Incidentally, healthy boundaries also allow us to more abundantly exude and take in all the good stuff.

Figure II – 

Person with Healthy Boundaries Enjoying The Good Stuff

I never knew all this; that’s why I am sharing.

Love,

Full Spectrum Mama

[EDIT, 1/13: My dear online friend Kmarie  Audrey posted this deeply thoughtful and interesting post after reading the above: 
http://worldwecreate.blogspot.com/2016/01/boundaries-christianity-grace-and.html]

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

An InLinkz Link-up

BOOTY CRUMBS II

In Booty Crumbs I, which was mostly about how some of us notice certain things a LOT, there was a discussion in the comments about how hard it can be to get some kids with sensory processing differences to notice Crumbs (boogers, dribbles…), on their faces and elsewhere, under any circumstances.

Hygiene is a huge issue in the Full Spectrum household because G

1. Doesn’t notice schmutz, or

2. Acknowledge the necessity of basic, routine grooming,

3. Doesn’t care about either, and

4. Doesn’t have great executive function and so forgets even with multiple

    reminders.

Bottom line, G doesn’t give a rip – and getting him to do stuff like wash his face in the morning or clean giant glops of food off his fingers could be a full time job.

I worry about this for two reasons. First, I fear it threatens his hard-won social belonging. Second, it is part of the underlying sensory overwhelm that G experiences in many contexts – what the Asperger Experts call “defense mode.” G’s general awareness of how/what he feels – physically, emotionally -- can be undermined by an underlying overabundance of sensory and emotional information. 

Before I was aware of how certain experiences and environments affect me, I would feel anxious, desperate, dull, angry, numb – and I’d have no idea why I felt that way, and very few resources to quell these inner (for me – others may tend to lash out) storms…I now know this phenomena is known as a MELTDOWN. Things like unrelenting social interactions, feeling cold or, yes, Booty Crumbs, can trigger overload in me and lead to a wide range of negative feelings that are too big to process unless I am able to remember at that moment why I am having the feelings. I am learning to find environments that better support my neurology – and to take sensory breaks when that is not possible.  

Seeing the differences in G’s awareness and demeanor in different contexts has shown me that he is intensely affected by his environment. That sometimes means that he doesn’t have the attention or mental space for noticing stuff on his body, or doing things to keep his body “presentable.” Just as I’ve begun to address my own sensory and neurological needs, what it might take to create a context for my son in which he is willing and able to attend to his own hygiene routine and general bodily cleanliness without so much effort on my part?

Just the other night, I asked G if he had brushed his teeth.

He said he had.

I felt his toothbrush: bone dry!

Having spent several minutes brushing our teeth together morning and night for the last few years (since the dentist told me this was non-negotiable if G wanted to “have teeth”), and having each of those times painstakingly wrangled him into participating, letting G self-regulate on tooth brushing has been a big leap forward.

I was – maybe I was lacking perspective but – devastated…and mad: “Don’t you realize you could die???? If your teeth are rotten and you don’t take care of your mouth you will get diseases! And you will NOT be handsome!”

Full Spectrum Mama needed to go meditate. (Since G was a baby who needed a lot of support in going to sleep, I’ve tried to practice meditating nearby – usually in the hall outside our bedrooms -- after bedtime. Note: this does not always happen as planned!)  

G walked into the hallway where I sat, then into the bathroom to brush his teeth.

After a few moments, I saw this:

                                       Figure I – The Sideways, and Therefore “Invisible,” Sneaky Peek

He saw me seeing him:

                                                            Figure II – The Seething Meditator

…and went back to brushing his teeth.

How does tooth brushing relate to Booty Crumbs? Well, in both cases, is constant vigilance the answer? Already, with one kid with an attachment disorder, I have to watch the every move of one person in our home. With G, I’ve tried charts, lists, points…and am beginning to conclude that these are not the solution.

My own experience shows that -- for those of us with sensory processing differences -- self-awareness (emotional, social, physical…) may have more to do with finding ways to modulate one’s overall sensory and neurological situation than with the rote learning of ways to manage schmutz. I am in a place now where I am just very much hoping that somewhere in his own particular developmental process he/we will create the mental/physical space in which it becomes possible to note the intrinsic value of Booty Crumb removal.

For now, though, it’s back to brushing our teeth together.

Love,

Full Spectrum Mama

An InLinkz Link-up

PROSOPAG-WHAT-Y-WHO????

Prosopagnosia! Prosopagnosia is one manifestation of Sensory Processing Differences wherein your brain doesn’t process faces in the standard way. It’s also known as face-blindness. And both G and I have it.

I didn’t realize how severe my prosopagnosia was until I moved to Vermont. Living in this state is harder for me, recognition-wise, for two reasons. First, the population is almost entirely white. Living in New York City and other more diverse, generally urban environs most of my life enabled me to identify people partly by skin color and hair texture. Second, there was a style factor in these cities which is, shall we say, not so much in play here: flamboyance of dress is not as common in Vermont as I’d like it to be – and not just because I can’t tell anyone apart. As my dear friend Fern once said when we were in graduate school at Columbia University – an environs that felt to us downtown denizens like a bastion of preppiness in the midst of a then-freaky New York City -- “I feel like a drag queen here.” Come to think of it, we need more drag queens in Vermont, too!

ANYway, in a state where most people are white and dress casually, sportily. I find myself frequently faced with a friendly person who knows me, and expects me to know him or her. Which I probably do. But not by face.

Oh and another thing: small towns. In small towns you don’t just see someone where they work or attend a specific activity with you, where you naturally might develop contextual identification. No…in a small town, you also run into them and are expected to recognize them IN OTHER PLACES.

                                             Figure I – Basic Distinctions – Weak to Strong Recognition

                                                    Figure II – Bonus Distinctions – Strong Recognition

None of these observations – from skin color to hair length or texture or color to age to gender identity…--- is a judgment for G or me (well, maybe style -but I celebrate style diversity!). We are generally much too engaged in attempting to navigate this neurotypical world to feel critical of others’ looks. Visual differences (there are others uncatalogued here that may be helpful: moles, glasses, braces…) are just ways to recognize people.

Once I get to know someone well, I am able to recognize them…most of the time. Certainly close-up! This is not the case for all people with prosopagnosia, some of whom are never able to recognize even their closest associates. G has thought other women were me from time to time, and continues to do so; only when he gets right in front of them is he able to see that he was mistaken. Disconcerting – but I get it. In fact, it was through watching G have some pretty notable encounters of this sort that I began to realize that I had the same tendency. Before this dawning, I’d been prone to wondering why I could not distinguish between most of the mothers at drop off (or their kids, or who went with whom…), but I’d just put it in my “quirky me” category, with a side of “pathetic.” Around the same time, there was a great article in the New Yorker by Oliver Sacks ***http://www.newyorker.com/magazine/2010/08/30/face-blind*** on this very subject (which also goes into topographical agnosia – another form of visual agnosia [lit.: not-knowing] - that I also share, but, luckily, G does not), and I realized there was a name for what G and I were experiencing!

G realizes that he has this Sensory Processing Difference, and that it’s something I, too, deal with. He’s learned to check himself in this area, and he’ll often say, now, “…Is that? …No.” He’s become more careful over time of calling out to his peers unless he’s sure it’s the person he thinks it is, which, frequently, it is not.

As G grows, he will be able to develop tools for recognition and hone his skills in this area. As awareness grows, he’ll know his face-blindness is a sort of Sensory Processing Difference that is shared by many. He’ll figure out his own best Distinctions, recognition-wise – and never need to call himself “pathetic.”   

Love,

Full Spectrum Mama

An InLinkz Link-up

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