Thursday, July 17, 2014

RIDDIKULUS!

G’s latest invention is a Lego Boggart game. Boggarts are a type of magical beast in the Harry Potter books known for taking the shape of your greatest fear. In The Prisoner of Azkaban, the students learn how to conquer boggarts by facing one who is kept temporarily in a wardrobe in the teachers’ lounge.

G attached a spinning tube to a play board. You spin the spinner around and something appears -- “like the boggart coming out of the wardrobe.”  G spun the “wardrobe” to reveal a headless Lego guy mounted on the back with a scrap of paper that said “[G]” on it.

“That’s your greatest fear, Mom: a headless or dead [G].”

GULP. Yes.

I love my children equally. But Z will trounce anyone or anything that gets in her way, while G has a more tender, awkward way in the world. So I don’t really worry about Z’s survival. Whereas G could trip over his own foot and fall off a cliff, and he’d be yelling “Love you, Mama!” as he fell, just for example, not that I am actually thinking of this scenario.

Then another spin: “This one is [Z’s] greatest fear: a dead Mama.”

Um, whoah. The label now reads “Mom.”

Right again! It’s becoming clear that G is a LOT more perceptive than he lets on, or than he – not being a verbal processor -- can express.

Z’s greatest fear may well be losing me, as she is a most devoted daughter despite some of the challenges of our relationship. I am struck lately by how little she resents me, in spite of my (attachment-disorder-dictated) extraordinarily strict boundaries and constant monitoring. I am all over her like white on rice (I guess in our household I should say brown on rice) to make sure she feels safe, stays within important boundaries, and does right. And – unlike many strangers and even loved ones who look askance at therapeutic parenting -- mini-girlfriend just gets it. She knows her Mama does this all for her. She knows she needs it, maybe even better than I do. And she loves and respects me above all.

“And here’s mine, Mom…Mom?”

I’m still speechless.

“Here, look!”

I dare to peek: his scrap reads, “pokemon never existed.”


                                                     Figure I – “pokemon never existed.”

“And don’t worry, Mom. I made the spell to fix everything!” says G. Then, as he learned to from the book, he declares, “Riddikulus!”

Another turn, and the clasp on the side of the tube holds a scrap with a funny face.


                                                                 Figure II – “Riddikulus!”

Harry and his friends know the trick with your greatest fears is to make them funny.

Apparently, so does my son.

Love,
Full Spectrum Mama







Tuesday, July 8, 2014

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 6th 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




Thursday, June 26, 2014

WADS

Here’s a spectrum for you: a Sneaky Spectrum.

On one end we have G, who does stuff like shouting “Don’t look! I’m changing!” when doing a changing-inside-towel thinger at the beach. As you might imagine, he’s not much of a sneaker. His sneaking is always cartoonish and ridiculous – stomping down the stairs on his tiptoes with a sheepish expression on his face as he tries to sneak a granola bar after bedtime, spitting his greens into the toilet then forgetting to flush

My father told me when I was very young that I was a bad liar and I’ve pretty much not lied since. That was a pretty good teaching. He also tried to teach me to be subtle and ladylike. Which did not work. Both of which – not lying, not being subtle (something that usually reads to me as manipulative) – now totally make sense in my corner of the spectrum.

At the other end of the Sneaky Spectrum, we have Z, who is a Master Sneak. And it scares me because I have no idea how to deal with it.

Here’s an example: WADS. One of Z’s special habits is making little balls of chewed up paper with water and spit. She likes to take them in and out of her mouth, and store them for long periods of time. This results in a reeking, festering mess; and, in her mother here, a mixture of exasperation, disgust and compassion. Obviously, wads fulfill a deep need in my daughter, whether for oral sensory seeking or something more emo-, and orphanage-related. But…I need to help her fulfill that particular need in a healthier way.

So I tried Solution 1: No Water in the Bedroom. This did not work, as Z is worlds above me in the Sneak Department. She found a myriad of ways to sneak water into her room and create wads. Stashing water in the containers of “beauty products” I gave her so she wouldn’t eat mine…a tiny doll’s mug under the bed with murky, saliva-y water…wads hidden wrapped in non-masticated tissues next to her bed “in case she needed to blow her nose”…

Over years, we’d have the talk – “Please don’t chew up paper and leave it in your room. It’s not healthy because the wads get full of germs and smell bad too.  If you need food or a drink I will give them to you…” OR “You may NOT have water in your room!” – and a few days (or weeks) later I would find a glass (or another vessel) of water and an (increasingly tiny) container full of paper/water/spit wads.

Innovative.

The mildly unsanitary aspect of the wads gets to me less than the sneaking. The worst part is feeling that I am somehow helping her to become a Master Sneak.

Telling Z not to do something just doesn’t work. (Lest you forget that this is a Full Spectrum we are working with, telling G not to do something doesn’t always work either. But he’s – I was going to say more sanitary, but no – less potentially dangerous in his efforts.)

Like many children with attachment disorders, Z has a deep underlying need for control. I can wear myself out supervising her every moment, but we are already almost there. And I need to help her learn healthy habits and heal her attachment disordered behavior, rather than training her to stay one step ahead of The Law.

I’ve long known I need to do something indirect, something subtle in this, the Matter of the Wads. Unfortunately, my brain just does not work that way!

Meanwhile, over the years, my early bird G spends his mornings reading; early bird Z seems to spend them making wads.

Until now!

Solution 2: After years of worrying about the implications of Z alone in her room with needles and scissors, I finally gave her a whole bunch of sewing and weaving stuff to play with at her own discretion.

I noticed a few weeks after the crafty gifts that these activities seem to have worked to channel/redirect her wad-making energy, indirectly and subtly!

This was so indirect and subtle I didn’t even know I was doing it.

Anyway: Huzzah!

Fingers crossed on the sharps.

Love,
Full Spectrum Mama

Tuesday, June 17, 2014

GRADUATION

Today is my son’s last day in elementary school. G graduates – with a formal ceremony and all -  from sixth grade this evening. He has grown more in the last year at his new school than I ever could have expected.

His confidence has soared in this diverse environment where he is no longer the “different” kid.

He can hit a wiffle ball. With a bat!

Yesterday, no less than “seven girls” deemed him "good boyfriend material."

Who is this self-proclaimed "popular kid" with sportsability (okay, let's not go too far, but he might not be the last person picked -- and that's not nothing!) and a modicum of social ease (in certain contexts)?

For one thing, he's the once-doting son who now answers my every utterance with a groan of "mo-o-om" -- before I even finish:

"Clean your --"

"Mo-o-om…"

"Finish the--"

"Mo-o-om!"

"Want some--"

"Mo-o-om…"

"Well, I was gonna say, ‘Want some cookies…’"

"[Grunt]."

The distance between the earnest, affectionate “Mama” of the always-cherubic child (am I blacking something out? Nah…) and the grunts and moans of the sullen tween is – infinite.

Yet he's still the guy who thinks he wants to stay up a little later “because I’m a big kid now,” and who falls asleep with his nose in a book, and, then, sleepily opens his arms wide for a snuggle when I come to tuck him in…

He’s still a guy with a lot of challenges ahead of him in middle school and life, but he feels really good about right now. Who wouldn’t, with “about twenty friends”????

Graduation. How did this go so fast? It’s certainly not a new or original story, but, like any rite of passage, it feels big to those of us involved. We’ve got his tie tied and his shirt pressed and hanging in his closet at the ready. In ways I could not have imagined a year ago, G himself is ready.

But I am not.

Stand with me, my friends, even those readers I’ve yet to meet. I’ll be the one bawling while my horrified son tries to avoid me in the school gym tonight.

Love,
Full Spectrum Mama



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