SEE EVERY SPARROW

Dear Persons,

One way to describe Sensory Processing Differences (SPD) is by using a filter metaphor: the sensory and neurological filters of people with SPD filter feelings, experiences, and/or surroundings differently than do the sensory and neurological filters of most people.

Some of our filters filter out more. Sometimes people with this sort of filter are called “seekers,” because they seek more sensory input, or they are called “under-responders,” because they feel/notice/process less sensory input than the average person does. 

Some of our filters filter out less. Sometimes people with this kind of filter are called “avoiders,” because they avoid the overwhelming input that certain contexts produce. They are also sometimes called “over-responders,” because they feel/notice/process more sensory input than is typical. 

Of course, all people have different levels of sensitivity, but these differences are magnified for people with SPD. Many people with SPD live with a mixture of filters, perhaps being extremely sensitive to taste, while craving strong movement (yes, movement is a type of sense, in fact, several sorts of sense - but that’s another post!). 

Sometimes a high level of sensitivity can lead to a sort of sensory shutdown that can look like a low level of sensitivity! 

Sensory integration - the seamless intermeshing of the senses, and the “normal” processing thereof - can be challenging for people with SPD. My son G and I both live with a mixture of extra-strong and extra-weak filters. Bright lights and artificial odors can knock me out, but I have severe face-blindness (prosopagnosia) and can trip over my own feet. Lights, smells, even loud sounds don’t phase G - and he shares my face-blindness in abundance - but there are other things of which he takes uncommon notice. 

One of the most wonderful things about G is that he notices every single bird in our environment. Not just your cardinals and goldfinches, but every pigeon - “Look! A pigeon!” “Another pigeon!” and every single sparrow we pass on the street - “Oh mom - do you see those cute sparrows?” “Hey, guys - a sparrow!” “There’s a sparrow under that car!” etc. 

Some people dismiss this constant-noticing, or rib him good-naturedly about it (“Wow, a sparrow!”), and it’s sometimes inconvenient and time-consuming, but I celebrate it with all my heart.

Imagine a world where every individual person was noticed and appreciated, no matter how similar, no matter how different. Imagine a culture in which everybody took the time, made the effort, to really see every single other person. I dare to think such things as gossip, bullying, stereotyping…all those evils that come from pre-judging others and from not seeing each individual as equal and worthy in their own way…would disappear.  

G doesn’t filter out every sparrow as just another instance of a drab bird among many. Instead he enjoys a sense of wonder for each tiny miracle of sparrow individuality. 

What if we all tried to see every sparrow? 

Love,

Full Spectrum Mama

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!

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LEAN IN, SPD STYLE

Picture my physically adept daughter sitting at the dining room table. She is leaning back in her chair with her feet up on said chair. I remind her that feet are not allowed on chairs at the dinner table. She removes her feet...but somehow manages to retain the exact same lean, with an expression of utter disdain and indifference.

Now picture me sitting at a different table, working in the faculty lounge of the local community college. You will notice – but I will not, at least until my neck pain tells me something is off, several hours in – that I am sitting at an extremely awkward angle.

 

                           Figure I – Awkward and Ultimately Injurious Angle of Seatedness, Not Noticed

Those of us with sensory processing differences may find ourselves in a myriad of awkward and uncomfortable situations/positions because of our divergent vestibular and proprioceptive systems, the systems that tell us where we are in space and how our movement and body location relates to what is around us.

Whereas my daughter Z’s balance, movement, and self-awareness in space are appropriate and allow her to do things in healthy, if sometimes snotty, ways, I fear I’d be barely able to function without my many, many years of ballet and yoga.... G’s study of Tae Kwon Do has done similar remediation for his vestibular, motor, and proprioceptive functioning.

I was uncomfortable sitting there at a random angle from the table, but I am so used to feeling awkward that I didn’t even wonder why, or take steps to address my discomfort, until my neck pain began to eclipse my concentration. When the normal smells and lights and sounds of daily life hurt your brain, what’s a bit more pesky input?

Becoming aware of these goofy and discomforting phenomena is the first step in trying to devise ways in which to avoid actually harming myself. But here’s the thing: mostly, I don’t even know I am doing things “differently” until something lets me know – another person (“Hey, [FSM], why don’t you put on a sweater, since you are shivering?” “OHHHHH! Great idea!”), or actual pain...

What other things do G and I do like sitting at wide angles to tables? I don’t even know. Probably plenty! Do you know a wide-angle sitter? A curb-tripper? A walker-into-walls?

Love,
Full Spectrum Mama


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! Want to join in on next month's Sensory Blog Hop? Click here!

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SPD, ASD, ABC, DEFD....

Please note: this post is part of the Sensory Blog Hop, which is sponsored by the fabulous Jenny (what a great name!) over at The Sensory Spectrum and The Jenny Evolution. I accepted the invitation to participate as a way to get more exposure for FSM, but it has become a wonderful, inclusive, helpful community for all us SPD Blog Hoppers. Please do click on the links below for fresh and inspiring perspectives and meet some very worthwhile new pals.

When my little fella started seventh grade this fall, I very nearly had a nervous breakdown. 

However, it seems to be going very well..socially...which is...a surprise.

And then there are his grades. Which are terrible.

You see, his ASD and SPD are a big part of his DEFD and this causes a decline in his ABCs.

Get it? No? Please allow me to break it down:

ASD officially stands for Autism Spectrum Disorder. I don’t like “Disorder,” so I end the phrase with Difference. G is on the Autism Spectrum. He’s autistic in the way that used to be officially called Asperger’s.

Among other things, this means G has challenges in the social realm.

SPD officially stands for Sensory Processing Disorder. I do the same here, calling it Sensory Processing Differences. G has sensory processing differences, as most people on the spectrum do, as many people in his biological family – including me – do…

Among other things, this means that G is extraordinarily neurologically and sensorially sensitive in certain ways, while in other ways he may seem “undersensitive.” Put another way, the systems of people with SPD tend to pay more or less attention to feelings and sensory input than is “normal.”

Each person with SPD is different. (Sometimes when one area seems “undersensitive” it is because an individual with SPD is already overwhelmed from “oversensitivity” in another area!)

DEFD stands for Determinants of Executive Function and Dysfunction. Executive Function – the ability to process and enact a series of thoughts and actions in an effective way -  has never been a strong point for G. This fall, his already low levels of EF took a major dive.

So did his grades – his ABCs, if you will.

The way I see it, these acronyms and what they represent in my G (and others) are all intimately connected: Each person has a given amount of energy. When it takes More energy just to function socially, resources available for other aspects diminish.

I figure there’s only so much G to go around, and, currently, it’s almost entirely being utilized in this area of Social Skills -- which has been a lifelong challenge for him.

                       Figure I – Allocation of Energy Pie Chart                

He's enjoying seventh grade (?!)  – and “extremely popular.” I should note that from what I can see and from what G tells me (limited!) this all seems to be happening on G’s terms, that is to say he is popular and liked For Himself, the quirky and brave kid that he is [sniff!].  Given this turn of events, I pooh-pooh EF and the desire for As (…and Bs…).

For now.

Love,

Full Spectrum Mama

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BLANKETS

Sensory processing differences make Blankets a big challenge for some. While my son, G, uses the same comforter year-round and is steaming in the summer and cool in the winter and “Mom, don’t bother me about this,” and my daughter, Z, always varies her blanket layers flawlessly for the “just right” amount, I am one of those people.

Here is a mere sampling of Potential Blanket Problems: improper weight, inadequate warmth, itchy, scratchy wool, side-to-side slippage, smallness, bottom-to-top slippage…Rilke said, “A work of art is good if it has arisen out of necessity”* -- so I’ve made a visual aid for those who might be unaware of the true scope of this topic.

                         Figure I – Issues in Blankets

For so long, at night, while trying to sleep or go back to sleep under Blanket(s) that just could not get right, I practiced thinking “peaceful” thoughts and feeling peaceful…In fact, for most of my life I have had an overarching goal of “achieving” “peace.”

A few months ago, I realized:

1. I didn’t get one of those kinds of lives,

and

2. Even if I had, my high physical and emotional sensitivities (SPD) would prevent total, utter “peace.”

So I decided on more realistic goals – goals that are worthy and sometimes a stretch but that I’ve for the most part been actually reaching; goals that make me happy (versus defeated) to think about…:

They are:

To practice living with

1.       much KINDNESS

and

2.      a mighty SENSE OF HUMOR.

So, now, when sleepless, I try (instead of perseverating on why I am not as “peaceful” or “asleep” as I should be) chuckling quietly to myself and, VERY kindly, I do not smack my peacefully sleeping husband. No, I am kidding about the chuckling. But it does help, with my particular neurology and bed-ology, to go for the gentle humor of it all instead of something overly elusive…

I haven’t even discussed mattresses, sheets, and pillows – or sharing a bed.

Love, and a big, sweet, slightly maniacal smile,

Full Spectrum Mama

*Rainer Maria Rilke, Letters to a Young Poet (Stephen Mitchell translation)

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“HURTASELF AGAIN!”

Every time we have a Silent Contest (a.k.a. “Mom’s only time to not hear talking all day”), G brings up the time his sister and cousin stole his french fries at a diner with his Full Spectrum Grandparents. Apparently, he’d been trying to win $2 in a table-wide Silent Contest (apparently, grandparents also like quiet moments), and was unable to protest the theft because of the need to be Silent.

So, naturally, he’d prefer NOT to have a Silent Contest, because he is still traumatized by The Incident. Which happened at least four years ago.

I tell this story because, well, I get it. Some of us with sensory processing differences are extremely sensitive emotionally as well as sensorially. And – whether through our senses or emotions – when we feel things, we feel them more deeply and intensely than the average person, so that sometimes they are unbearable…and sometimes they are unforgettable.

I think of it like grooves on a record (remember those? C’mon hipsters!): the original grooves are deeper, as they are more strongly felt; the grooves that remain over time are worn away more slowly, if at all, because of their original depth. Literally, though, it’s the neural connections experiencing and recalling these feelings/events that are more robust. This might account at least partially for G’s and my eidetic memories, with which we are able to visually recall whole swathes of text or things we’ve seen or heard (transformed into text, for me).

At the same time, the processing and memory space taken up by these strong feelings seems to preclude the remembering of – or paying attention to - whole other piles of things. We may seem flaky, or physically uncomfortable, or socially awkward. We may get lost – directionally or in other ways. Sorry!  Brain full!

When I was a little girl, every time I would get hurt I would say, “Hurtaself…AGAIN!” Even then, I associated pain with previous pain, and strongly recalled other injuries, because they really, really hurt. (I remember{ed} the good stuff too – that’s now one reason I remember to write thank-you notes! – but that’s another story.)

                    Figure I – “Hurtaself again,” Adult Stubbed Toe Example

Think I’m being dramatic? Last year I had one of those cavities where you chew the wrong way and you fall down in agony before even having the time to think about it. I went to a local dentist and he could not numb the tooth. I went to an Ivy-affiliated dentist several hours away who was likewise unable to numb the tooth. The fancy dentist told me my tooth was “enervated,” meaning that the nerves associated with the tooth were many and widely dispersed and thus it was impossible to eradicate the feeling in that tooth. I would need to go under general anesthesia to get this tooth fixed (both dentists were able to put temporary “band-aids” on the tooth). 

Enervated. In general terms it means to make weak or lessen someone. But in teeth it results in Feeling More. That sounds about right for just about everything in SPD land.

Love,

Full Spectrum Mama

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THE BURNING BRAIN

As a variation on the theme of the Sensory-Processing-Differences-induced Full Brain, I offer The Burning Brain:

     

                                                                Figure I – The Burning Brain

And just one little Burning Brain story among many: There was a family-welcome, community-building meeting for our local Autism Spectrum Disorders group a few weeks ago. I’d never been before because I always have the kids with me at night, but thought I would go since kids were welcome this time.

En route to the meeting, we stopped by our town’s First Friday celebration where there is art and music and stuff. That was our first mistake. Two events? What was I thinking?

I began to get a headache.

We arrived at the meeting and there was a ceiling fan! And bright lights! You can see where this is heading…And there were a bunch of very, very nice people, mostly educators and paraprofessionals, at whom I could not look. No other kids, but hey, my kids are a lotta kids.

By this point I could barely see or hear. I could feel the inflammation inside my skull (see above), and my head felt like it was about to explode. Just throbbing with pain. The fans, the lights, the conversation, the nice, nice people? Unbearable.

I drove home trying not to vomit, got home, vomited from pain…

One single burning thing I was able to think during this episode: I can only imagine how a child would handle this!

This is Sensory Processing Disorder: a relative overabundance of stimuli (whether of activities or sensory input) causes migraines for some people. This same overabundance can also cause some of us to feel overwhelmed with despair, or anxiety, or anger and - especially before we are aware of Sensory Processing Differences - to not know why we feel this way. Kmarie Audrey has written wonderfully about this subject here. 

Again, imagine how this process of Sensory challenges leading to emotional/social/physical pain and/or overload would affect a child! A huge meltdown or tantrum seems almost – dare I say it? -- ”under-reactive” in this context!

My son, who also has Sensory Processing Differences, tends to shut down, or get more flappy and loud than usual when in Overload Mode. I talk to him about it, and hope he will have the words and wherewithal to deal with it as he grows up.

Me? I mostly get Burning Brain these days. Once I am in that state (and by this point medications do not help) my migraine will amplify any sensory input so as to make the smallest thing (lights, sounds, smells, movement) literally agonizing.

On the most basic level, I get why a clothing tag might make someone scream, why swinging on a swing soothes some and dysregulates others, why seeing a bright color could cause nausea or even vomiting…

There is a great deal of skepticism around Sensory Processing Disorder (SPD), so I write this for those who cannot put their experiences into words as well as I can (at least in writing), and/or who do not have an audience. As an adult, I have a certain legitimacy, where a young child might not. I am able to be articulate in ways that a non-verbal or less verbal person might not be...As a college professor and an individual with some level of “success” in life I implicitly have the credibility that those who are even more profoundly affected by Sensory Differences might not be freely given by others.

SPD is not an “excuse” for me – I have a good life! – but it is very real and very challenging and as a label it does explain some of my lived experience. For some of us, including many children and people with autism/autistic people, SPD – while it may have its positive aspects (about which I have written before and will write again) – can make life quite difficult.

We may need help. We may need accommodations. We may need creative solutions and adaptations. We will need understanding.

Please believe us.

Love,

Full Spectrum Mama

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THE HEAT PLUS THE FEELING

After reading my last Sensory Blog Hop post, Whistle Nose, our friend Noodle Ayi (Auntie Noodle) talked about how part of having a hard time naming and interpreting emotions (Alexithymia) is also related to not knowing how emotions feel in our bodies.

Huh? Hadn’t even thought about that! For the Full Spectrums who are on the Autism end of our spectrum, both of whom have Sensory Processing Differences, knowing how an emotion feels in our body AND having a feeling at the same time AND functioning will be a lifelong project.

Here’s a recent example: G’s Graduation from 6^th Grade, about which I’d been very apprehensive, primarily because I thought I would humiliate him with my sentimental sobbing. What actually happened was VERY Sensory, but also unexpected.

G cried, ceaselessly through his entire graduation ceremony. Big blubbery tears, shaking, trying to stop, humiliated, heaving, producing copious liquid from nose and eyes.…on the stage.

Figure I- G: SPD/ASD Child: 

Heat Plus Feelings (Crying) Equals Full Brain

To stop crying would have taken some extra capacity he simply did not have, what with the Heat and the Crying/Feelings.

Z – our resident Neurotypical, who’s also on the no-nonsense end of the spectrum -- asked, repeatedly, “Why is he crying?” Not so much with scorn but sheer bewilderment.

I didn’t cry at all.

Figure II – FSM: SPD/ASD Mother: Heat Plus Feelings (Psychicly Messaging G to Try to Stop Crying Plus, Especially, to Stop Overtly Wiping Giant Gobs of Snot on His Arm) Equals Full Brain

To cry would have taken some extra capacity I just didn’t have, what with the Heat and the Sweetie-Can-You-Stop Feelings. 

All my energy was channeled into trying to get him to calm down and breathe – complete with “useful” facial cues – and to stop, just - PLEASE, for your own sake son! -- with the snot.

So many adults came up to me afterwards and said how touching his crying was, one spoke of his “pure heart,” but I know he felt terrible. It couldn’t have been a big status-builder with his peers.

G’s an old sap from a long line of softhearted saps, and this event was overwhelming on a myriad of levels. Being hyper-empathetic, I think he was feeling and expressing what so many in that room were feeling and not expressing. And it was a huge year for him, finally feeling like he belonged, in unprecedented ways.

Most of all, the heat in that room was so overwhelming that for both of us it was almost impossible to function. I am sure it was awful for everybody, no question, but with Sensory Processing Differences the brain simply cannot prioritize in the “normal” way.

Heat plus another thing? That is IT.

Then G got REALLY SICK. Fever, nausea…I think the latter might have had to do with his eating four desserts during the “refreshments” part, but I genuinely think the fever was his feelings in his body. This scared me, because I, too, get my feelings in my body – and I ended up with rheumatoid arthritis, one of the few diseases known by western, mainstream medicine to be in many cases the result of trauma.

In these ways SPD is so closely linked to our emotions. If we can better process our feelings, we will be exponentially healthier – body and mind.

But if you take even just this one little scenario, Heat plus Tears or Not-Tears were maximum-capacity situations for us. Noodle Ayi’s sage thoughts around figuring out how emotions feel in our bodies were one order above where we sat, blubbering and not blubbering, in that hot room.

There was no

“how does my body feel right now?”

never mind

“what is this emotion my body is feeling?”

never, never mind

“I am feeling this way, which represents…”

For some people with Sensory Processing Differences, even ONE of those factors might be enough, as in: Heat = Full Brain = Go Home, or Big Feeling = Full Brain = Tantrum.

So you can see where it might be nice to have strategies to manage all sorts of scenarios involving, oh, life. It could be extremely helpful to be able to use another tool to discern how we are feeling, from the way our bodies are feeling.

The first step for our Full Spectrum family, though, has been to acknowledge and begin to understand how we process experiences in ways we could not fathom before knowing we had Sensory Processing Differences.

I’m feeling….hopeful?

Love,

Full Spectrum Mama

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