Tuesday, October 14, 2014

“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




Thursday, October 9, 2014

SOOOOO CONNECTED

For Nephy.


My gal Fern came last weekend with her two-month-old baby who was adopted at birth. He is a mellow little dude, easily soothed. Spending time with him, I was reminded of my babies when they were little babies, and both of how precious, intense and full-of-feelings that time is and of how very widely it can vary.

I was not reminded of my babies themselves, though, because I never had any baby like that.

Both of my babies were on the high, high needs end of the spectrum. Although we did not know it at the time, G was already experiencing the difficulties of sensory processing differences and cried relentlessly. He seemed genuinely uncomfortable much of the time. (Bonus, he hated feeling wet so much that he basically potty trained himself really, really early!)

We were similarly unaware of this at the time, but Z came to me in full-on attachment-disordered mode. I couldn’t put her down for TWO YEARS. She would scream in a way that set me on edge (this is called non-attachment-promoting crying, and sounds angry rather than helpless-babyesque) at the slightest threat of separation.



We were all snuggling together peacefully – baby, kids and I --- when Z asked, “Was I like Nephy [what we started called the baby pre-adoption, short for nephew] when I was a baby, Mama?”

“Um….Not really.” I had to think for a moment before speaking. “I loved you very much, just like Fern loves Nephy…But…you were not a mellow dude. You wanted to be held all the time and got very loud and angry if I wasn’t holding you.”

“Oh Mama, we must have been really connected!” she exclaimed.

Er…Not what I I’d’ve said…but…Yes!

“Yes, sweety.”

Love,
Full Spectrum Mama



Monday, September 29, 2014

THE MEGA MASTER

Two weeks into this semester of Comparative Religion, a student called out at the end of class, “Dr. [Full Spectrum Mama], this is kind of a funny question but…are you [G]’s mom?”

It turns out that this fellow was one of G’s counsellors at a wilderness camp he attended this past summer. Because they hike up into the woods for camp, I hadn’t met some of the counsellors (the ones who were waiting mysteriously up at the Hogan every day).

My student, having watched me for two three-hour classes, said I “look and act exactly like [G],” so he “just had to ask.”

This gave me so much hope, because I am – despite my differences or because of them or some mixture thereof – totally fine. I don’t worry about me. But I DO worry about my son. And sometimes people think I over-identify with him, but this is because 1. I get him – profoundly, and, 2. I want him to be okay in the end, as I am.

I always tell people I was almost exactly like G at his age, but female, and people who’ve known me only as an adult don’t believe me, basically because they think G is  “more autistic” than they think I would have been. But I know, and I remember.

Heck, forget being “okay like I am” I would like to see – and do, often, see – G as being okay in different ways. And I would love for G to surpass me in the neurological department and anywhere else. Isn’t any parent glad to see their child out-do them? It seems like that would be a very visceral survival thing. Differences are welcome and celebrated in our family as well! When I see Z shining in her acrobatics class, doing things I can’t even imagine doing, I am beyond proud.

In addition to neurological and physical differences, we need to take into account temporal differences: when people presume that G will stay just as he is, rather than growing as I have and then some, I find it highly botherous.

In any case, G’s strengths and challenges resonate deeply with me, though I always try to respect his separateness and unique personhood. I currently am having an opportunity to distinguish between us in a major capacity, because…

The beginning of Middle School has been a breeze.

…Did I even just write that?

I have spent the last two to twelve years (depending on how you measure it) worrying about Middle School for my son -- at first because Middle School is usually dreadful; later, and in this mode much more assiduously, because of his social challenges.

Seventh grade was a low point in my life. There are a variety of reasons for this, but my social challenges would rank up there near or at the top. I was so painfully shy in my new school that I was unable to say hi to people. I didn’t want to insult them by implying that they knew me. But people took this as my being snobby! And that’s just one example!

Trust me - it was ghastly.

G has had some challenges, to be sure. The adjustment to lockers was…epic, and most of my concerns in Middle School Prayers remain relevant.  But the bottom line is he walks out of school every day waving casually: “Heeeeyy, so-and-so,” “Yo, dudette”…And people…reply?

Is Middle School better than it used to be? How can isolating children in one place at their most antisocial, brutal stage, while combining students from several elementary schools so that they are naturally forced to jockey for position and, therefore, usually, inclined to identify scapegoats, ever be good?

My seventh-grader rates every day an 8 or 9. His innate positivity?...Cluelessness? New and improved brand of Middle School?  I’m surprised – but I’ll take it!

As G headed to school today, his hands were wrapped in a homemade “Mega Master Mega Evolution” Bracelet for his imaginary Pokemon (Figure I).


          Figure I - "Hey Pokemon fans out there: this is [G], the Mega Master!" (Caption courtesy of G)



“[G],” I said gently, “you might want to leave that at home.”

“No way, mom[Friend A{awkward, sweet guy}] and [Friend B{goofasurus maximus darling boy}]* will like it, and I don’t care about anybody else.”

I am so proud, and relieved beyond measure. Now what should I think about?

Love,
Full Spectrum Mama


* That's, count 'em, two friends. Two friends! 





Thursday, September 25, 2014

THE COMPLAINT DEPARTMENT NEWS

It’s that special time of the year again when Partial (incomplete) Monochrome Persona (PiMP) begins to solicit COMPLAINTS on behalf of Full Spectrum Mama for THE COMPLAINT DEPARTMENT. Last year, we published COMPLAINTS of a very wide-ranging and accepting sort, in hopes that, by being COMPLAINED, said COMPLAINTS were rendered slightly less itchy, lonely, peculiar, injustice-esque, throbbing, tender,  and/or badbadbad.

New for 2014: a handy dandy COMPLAINT DEPARTMENT button, at right, where COMPLAINTS may be submitted year-round!

You will know it by its custom-designed "depressing rainbow" illustration, courtesy of Full Spectrum Daughter, Z:



COMPLAINTS received by early January will be eligible for the 2015 COMPLAINT DEPARTMENT post. As always, this commiserative, inclusive solicitation is not meant to imply that THE COMPLAINT DEPARTMENT is “open.”

Yours Truly,
PiMP



Wednesday, September 17, 2014

OUR FIRST ARGHER AND ACTIVIST AWARD

I know an Argher and an Activist when I see one, and, once in awhile, I am going to need to give a shout out to someone who really Arghed and Activised the heck out of something.

The first Full Spectrum Argher and Activist Award goes to a 14-year-old kid who happens to be on the spectrum and happens also to be a badass knight in not-gonna-take-it-anymore armor in Bay Village, Ohio who bravely came forward and called out the people who played a (warning: graphic and disturbing) TERRIBLE ALS Bucket Challenge prank on him.

Some people just can't get right....but some CAN! Bravo,  courageous one.

Please show your support at this Give Forward site.

Love,
Full Spectrum Mama




Tuesday, September 9, 2014

PARTY BOOKS

I.

We are at a party. I am having a good time because I am emotionally prepared, have had my one allotted beer, and know lots of people. Z is fine, as always. G is careening around, reminding me of Brownian Motion, not connecting.

He’s basically gorging on sweets and walking in circles around the perimeter of the party.

I know he feels overwhelmed, maybe lonely too.




                                                  Figure I – What a Party Can Feel Like with SPD



II.

G is swinging on a vine outside the party.

“That kid is weird,” says a young white girl, maybe 7 or 8 years old. Her two companions, same general description, nod their heads.

Why? WHY IS MY KID WEIRD? What did he do? Seems to me this vine-swinging is the most “normal” thing he’s done all night.



III.

G wants to leave, as he has from our moment of arrival. I try to buy some time outside. A family - mother, father and child - are standing nearby. The father takes the child, gets in the car and leaves. From the child’s posture, I sense exhaustion.  

“Too much?” I ask the mother.

“Yes,” she says.

“Sensory processing differences?” I wonder aloud, not entirely sure why…just a gut feeling…

”Oh yeah - ___ [her child] is definitely spectrumy.”

(Note: While not everyone with Sensory Processing Disorder {SPD -- which I prefer to call “Sensory Processing Differences,” by the way} is on the autism spectrum, most people on the spectrum do have Sensory Processing Differences. Both ASDs {autism spectrum disorders – though I do take issue with “disorders” in this label as well [another post!]} and SPDs share the aspect of being neurological – vs emotional or psychological – differences.)

But back to “spectrumy:” Yay.

Now we can talk. And we do. Our kids were in different grades at the same school, which is why we looked familiar to one another. At this party, while my G was blundering awkwardly around, her child was getting and expressing an overwhelmed feeling in other ways.

So we have this great bonding conversation about the kids’ social lives and our home lives and all...

…And then she says, “I wish I’d’ve just let ____ bring a book. Then this all would have been totally fine.”

“Whoah,” I shake my head. “G wanted to bring his book too, and I just wanted him to try this and be here, try to connect and talk to people and practice social skills…you know? And it’s been pretty rough…WHY DIDN”T WE JUST LET THEM BRING THEIR BOOKS?”

We sad-smile at each other.

They could have sat together, reading. I bet they would’ve been totally happy, not careening or leaving. I bet they would’ve had the best time.

Next time.




                                      Figure II – What having a Book at a Party Can Feel Like with SPD

Love,
Full Spectrum Mama







Wednesday, September 3, 2014

ARGHERS AND ACTIVISTS

Hello, my name is Full Spectrum Mama and I’m an Argher and an Activist.

I’ve been politicized by having “different” children, but I suppose I was pre-politicized by being “different” myself. In the family I grew up in…well, let’s not get into that. Let’s just say it took me a long time to realize that speaking up when something is wrong is not “having a victim mentality!” It’s about seeking justice. Speaking up does not make you the bad guy. It makes you an Argher and an Activist.

The “Argher” label arose when my Meeting Friend and I were commiserating over an injustice and I thanked her for the pleasure of feeling like we always understand each other and she replied, “I can argh with the best of them.”

Well, I appreciate that a great deal!

People with obvious differences from the “norm” and/or the majority  – those with visible physical differences, differences of demeanor, skin color differences, some trans people… – don’t have a choice about being noticed. Sometimes that “noticing” takes the form of bias, discrimination, bullying…

People who are activists for animal rights or political justice or against other injustices may be activists for causes that are urgent, but they have a choice.

In any case, there IS injustice in the world.

Sometimes what we need when life deals injustice is someone to say “Argh!” with us. And that can be enough. Actually, we almost always need a fellow Argher -- at the very least to understand and empathize.

There are several sorts of Arghers:
            The CO-Argher, who shares your situation;
            The WITH-Argher, who just completely Gets your situation;
            The GENERAL-Argher, who is compassionate in every way…
…We will not deign to discuss the ANTI-Arghing-Argher, who wants the other Arghers to can it, pronto.

Our fellow Arghers make life bearable when something feels very wrong. But, often, we need more. The “Activist” label arose for me when stupid stuff happened & I chose to call people & institutions out on their discriminatory behavior. Activists seek to be catalysts for change, because the status quo is often unacceptable.

Arghing is private, but Activism is public and often elicits resentment. People generally want Activists to keep quiet and go away so that they don’t have to be inconvenienced by accommodating the equality of ALL.

So—rry.

Activists may be sorted into similar categories:
The CO-Activist, who shares your cause (just about everyone I know who has a “different” child has been shunted into Arghing and/or Activism. As a parent, one basically has no choice);
            The WITH-Activist, who just completely Gets your cause and supports it;
            The GENERAL-Activist, who is justice-oriented in every way;
The ANTI-Activist, who finds Activists burdensome and pesky.

Liminal people – minorities, people with differences, etc. – often have way more encounters with neurotypical, gender, economic, racial, normative or other privilege. If a given liminal individual (or their parent or partner or other loved one) is strong/brave/privileged/foolhardy enough, he or she may choose to speak up about injustice.

For many reasons, however, we don’t always say something, whether through public Activism or private Arghing. Some of us are non-verbal, some of us are shy, some of us are scared, some of us are tired, some of us are cynical, some are resigned…

We DO always feel it, though; of that you may be sure.

What happens, then, is that those of us who by virtue of our own and/or our children’s and/or our loved one’s differences see more injustice and choose to address it sometimes find ourselves in these positions:
“rebellious” people of color,
“uppity” women,
“whiney” people in poverty,
“annoying” disabled people,
“shrill” queers…
A.k.a., Arghers and, perhaps, Activists!

The funny thing, vis-à-vis the people who resent Activism, is that the kinds of Arghing and Activising that I am talking about are long-term beneficial to ALL. Sure, it might take some stretching on the parts of certain individuals and institutions. The “privileges” of inequality from which some benefit (and others suffer) may be hard to relinquish, but I cannot hope but believe the rewards would be more than commensurate. Truly, what do we ultimately have to lose by being more inclusive as individuals and communities??

Ideally, as painful as they are, these experiences of talking about and struggling with and negotiating over and even experiencing injustice make us more fully human, more empathetic to others.  Once we have experienced injustice, we don’t want ANYONE to suffer.

Take, for example, Hedy Epstein, the 90-year-oldholocaust survivor arrested for protesting against institutionalized racism and violence in Ferguson, Missouri last month. My instant take on hearing about her was: OF COURSE: She has experienced and recognizes injustice…She cannot stay silent, having once escaped being permanently silenced.

She, too, is an Argher and an Activist.

We can be proud to share her proclivities!

Love,
Full Spectrum Mama, A. & A.