"MOTHER APPEARS DISHEVELED"

Dear Persons,

I was listening to NPR not long ago and ended up sobbing in the car. Again. The segment that got me this time was on voting rights (read it, and possibly weep, here), and how in many states persons who have appointed guardians do not have the right to vote. Whether to apply for guardianship of my son is probably the question I struggle most with on a day to day basis (followed closely by even more terrifying questions about what will happen to him when I am gone). The thought of my brilliant, politically-engaged son being unable to vote was one more tally in the non-guardianship column. I want to always err on the side of presuming competence, yet I always want my child to be able to, you know, live...sometimes despite himself.

I mention this not because this matter is resolved, but to point out that for parents with atypical children, and for people of difference in general, the world out there (your basic radio show, and so on) can be a bit of a minefield.

I have many friends – who I still speak to! – who like to say “Oh, it’s hard being the parent of any kid.” Sure, I will give you that. And I will gladly agree we most of us love our kids the same agonizing, rapturous, heart-expanding amount. But I am not Full Spectrum Mama for nothing: I have one typically-developing child and one who is developmentally and neurologically atypical and I can assure you it is not the same kind of hard! When your child develops differently there may be taken-for-granted, essential life skills that he or she may develop late...or never.

The idea that G will “grow out of it” – whatever “it” is – is thus often meaningless and certainly not reassuring.  For example, all his life G – despite assiduous and almost-constant attempts on my part to change this - has used his clothing as a combination napkin/tablecloth while eating. And that’s when he notices he has food on his face or hands...which he usually doesn’t. In the scheme of things, I’d like to think of this as minor – I mean, G is extraordinarily KIND and FUNNY and SMART – yet how will this be viewed by a potential employer? Or partner? (And no, I do not mean typical sloppiness, my “all kids have challenges/all boys are slobs” friends.)

Or perhaps your child is or you are (as am I) at the other end of the noticing/reacting spectrum and barely able to function because of obsessive compulsive (OCD) needs and/or sensory overload from crumbs and the like?

Maybe G’s table manners will improve someday. Maybe someday I will be able to ignore a single crumb on my finger. But sensory processing differences (SPD) and other neurological differences are often integral to who we are, part of our very biology. Neurodiverse and differently-abled persons may develop neurological, practical, and/or emotional strategies to function in a world that was not designed for them – and sometimes doesn’t make sense - but there is much we will never “grow out” of...

My conservative yet highly clinical estimate is that I worry about G a million, billion, gazillion times more than Z, my typically-developing, typically-abled daughter, even though she has had her issues as all children do...

I usually write more from the perspective of a child advocate, or in efforts to spread awareness and acceptance of difference. This time, I wanted to write about what the parents I know who have children with extraordinary challenges feel like a lot of the time, both to acknowledge and honor them (us) and to spread awareness on this front.

I am not complaining – my child brings me extraordinary wonder and joy every minute of every day – I am explaining.

Those of us with who are different, or have children with differences – or both! – have to navigate more-complicated, often “inappropriate*” (to us!) environments and interactions – environments and interactions that may feel overwhelming, cruel, arbitrary, opaque -- almost all the time. In a very real sense, the “problem” is the world, not our kids/us.

My Meeting Friend became my dearest and most-cherished support-network-of-one when mutual friends who knew our children kept suggesting we connect, and then our paths kept crossing en route to and from Meetings, therapies, etc. etc. My Meeting Friend was once at a Meeting – of which one has exponentially more with an atypical child (and yes I know this from personal Full Spectrum experience) – and glanced over at what one of the “professionals” there to evaluate and assess her son had written on a pad and read, “Mother appears disheveled.”

Now this is a mother who has willingly and bravely made changes and sacrifices for her child beyond what most could even imagine. That very day alone I am positive she had already cooked several different healthy breakfasts taking all individual food allergies into account, carefully planned out ways for both of her children to have their own kinds of successes (including – egads! – athletic successes!!!!) and learning experiences, gone to great lengths to ensure social interactions and a beneficial sensory diet for her son, written several emails regarding grades, social situations, IEP, 504,etc.,  made sure her other child felt “just as important,” oh - and worked at her job...** With a smile on her face.

I am impressed she even had clothes on after what she has been through. But there that note was -- amidst, I am sure, other stuff (such as “EXCELLENT parenting!” and “Kid is PERFECT, just a WEENSY bit unsuited to the average boring old, sensory-/social-nightmare classroom”)  --  ...”Mother appears disheveled.”

Figure I – Disheveled Mother

...Ya think? And I wasn’t there at that particular Meeting, but I do know that she has had the grace to laugh about it ever since.

My friends, do you appear disheveled or know someone who does? From crying in the car, maybe? Are you disheveled on the inside even if you appear “heveled” on the outside? You are in good company.

Much Love,

Full Spectrum Mama

* “Inappropriate” is such a trigger word for many on the spectrum. There are a lot of “normal” things we find “inappropriate,” believe me (and there is no monolithic “we” in either neurodiverse or neurotypical contexts!). Nonetheless our children are often told, especially in school, that X, Y, or Z is “inappropriate”...One hopes that some consideration is given to the possibility that people who perceive and process differently may have different standards – and not always assume that neurotypical standards are the correct and appropriate ones. 

** How do I know these things? Because I know my Meeting Friend. But also because I and most other parents I know who have children with differences do these types of things Every Day. I just wrote a letter to G’s teachers and “learning specialist” while I wrote this footnote.

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

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

An InLinkz Link-up

The Least Popular Kid in the Class – Part Two

At the time of the Least Popular Kid in Class Incident (http://fullspectrummama.blogspot.com/2013/02/the-least-popular-kid-in-class-part-one.html), I tried to get the scuttlebutt on what – besides crying -  happened after G answered the day’s question, but continued to get “stuff” in response.

Chances are, he was genuinely unable to put his feelings into words.  We are neurologically quite similar, and it took me until, oh, last year to realize that where I stand on the spectrum, I tend to get upset before I understand exactly why I am upset (never mind putting those feelings into words!). The overwhelming quality of intense feelings precludes clarity around those feelings until the strong feelings subside. This can be true of overpowering sensory feelings (such as those experienced by sensorially-sensitive people in the average classroom), as well as emotional ones.

Still, knowing that he needed time to process was not going to directly aid G with his lack of popularity, or make him feel better about crying in front of his classmates.

Outside of suspecting it would not be really, really helpful to tell G, “But you’re my very best friend, buddy!” I was at a loss of how to help my child.

So I wrote G’s teacher along these lines:

Dear [teacher],

I love that you start morning meeting with a question. I do the same in all my philosophy classes [read: I am not about to bust your chops for asking big questions]. And I think yesterday's question was a great one. I’m just unclear on exactly what happened after [G] answered the question and then, “for some reason” (according to him), began crying.

When you get a chance could you let me know a bit about what happened yesterday so that I can best support [G] at this time? Or if you have any suggestions...

I know you have your hands full, so at your convenience.

Thanks so much,

[Full Spectrum Mama]

Responding via email, G’s teacher explained that a number of students had been being inattentive or having side conversations while G spoke. Other students had interrupted him, saying that he was wrong about being unpopular. These latter, while acting with good motives, “were not speaking in turn or being respectful to the process.” These factors contributed to G’s frustration.

He assured me that he had never seen anyone be intentionally or directly unkind to G, but admitted that G is often left out or “not paid attention to”…

He concluded with some positive thoughts: “As stressful and unpleasant as it was, I believe that the log jam's been broken and we are going in a positive direction with this very social class.  While I apologized to [G] for him having to go through this situation I also thanked him for giving us all the opportunity to examine our careless and thoughtless behavior and make positive changes.”

Whew!

It was a great gift to have a broader picture of events, and to be able to engage G in a slightly more nuanced processing of what had happened. Not that any of this is going to turn G into someone who doesn’t sometimes get flappy, or extra-loud, or reveal new heights of dorkitude. It might help him accept himself, though, and that’s more than good enough for those of us who love him.

“Free to be You and Me,” with its messages of inclusion, celebrations of difference and our family favorite song “It’s alright to cry,” has been on pretty heavy rotation in G’s room the last month or so. He seems to be feeling less lonely at school, but he’s still asking to spend recess reading in the library because, for him, navigating the playground scene is tremendously daunting.

Now, over a month out, I think everybody was right: lots of kids grew and stretched to be more inclusive and thoughtful following this incident – but G may still have good reasons to cry in school.

Sometimes, too, he may not even know why he is crying.

What he will know is that crying is healthy and totally, utterly, absolutely super alright: http://www.youtube.com/watch?v=Y52bs0aX6v8 *

Love,

Full Spectrum Mama

* Best. Video. Ever.

Clarification Interlude

This morning I ran into a colleague while having an oil change. I told her I was “pretty excited” about something, I don’t even remember what, because I was just chewing the fat, mmmkay?

“Well, obviously you’re a pretty hyped up person,” she informed me.

And here all these maniacally stressful years I’d thought my hard-won (let’s not call it fake, hey?) positive attitude was coming across as, I dunno, mellow cheer.

Also, my Very Strict Writing Group Overlords have cautioned me that lately Full Spectrum Mama has been sounding a bit “breathless” and overly full of “We Can Do This” attitude, leading to an overall impression that I “have things figured out” and am a “Good Sport.”  Knowing me as they do, they dared to question this state of affairs.

I had a chance to ponder their impressions the evening after our last meeting, as my car overheated on the highway and the Full Spectrum Family’s 3 hour trip turned into 6-plus hours with a special bonus of three roadside diarrhea incidents and one potential car-repair-bill-induced panic attack.

The only Good Sporty part of that whole story was when we finally got to the convenience store and I let the kids pick ANY donut, even though it was well past Dinner Time.

I’m horrified by the possibility of a random reader falling upon this blog and feeling alienated and, possibly, inferior because I come across as a Pollyanna of competence, wisdom and equanimity. Because, do I really have things figured out? No.

So I’d like to clarify.

The following pie chart roughly illustrates a more realistic model of Full Spectrum coping techniques:

Love,

Full Spectrum Mama