Wednesday, November 26, 2014

CAN I SLIDE DOWN THIS?

I’ve often said I’ve never in G’s entire life wanted to hit him. Until yesterday.

Leaving Pardner’s basketball game at the rec center, G – who has the balance of, um, a person without balance - casually threw a leg over a slippery metal pole and was about to slide down the skinny handrail that hung over a three story stairwell.

I was about ten feet away, attending to his little sister, when I heard him ask, “Can I slide down this?” Quicker than one would think possible, I was at his side and pulling him off the railing. I pushed him against the wall where he would be safe. I felt a surge of adrenaline such as I’ve rarely if ever felt before and only at great effort prevented myself from punching him.

My voice, when it came out, didn’t even sound like me. It sounded like a very hoarse man: “DID YOU LOOK??? DID YOU? DID YOU SEE THAT YOU WOULD ALMOST DEFINITELY HAVE SLIPPED OFF THAT RAILING AND DIED???”

Here is a picture of the stairwell I took when we returned to discuss this again: you can see the kids’ heads and shoulders waaaay down there. G asked, from below, “Do you want me to pretend I am dead?” 

NO. NOT. FUNNY.



I've written before about trying to get G to Pay Attention to the WorldI can’t say my lectures around his almost sliding into oblivion (or, at least, severe injury) felt groundbreaking. But, since it is clearly so incredibly, desperately beyond important, I tried: “You need to think before you act, [G]. Remember how I have been asking you to pause when you leave school and close your eyes and think if you’ve forgotten anything? Well you need to do that much, much more. Like, whenever you are about to do…anything.


“It’s not that something’s wrong with you that makes it necessary to think before you act.

Everybody has to think before they act.

“Your sister. in particular, has to think before she speaks. Because she talks a lot and sometimes says sassy stuff. But you need even more to think before you do something, like cross the street. Most people already DO THAT. But you don’t.

“You could have been dead yesterday. Look at my face. Can you imagine how we would all be feeling today if that had happened?”

Unfortunately, I don’t feel like he’s really listening or grasping the impact of my words -- or the possible repercussions of his actions. He’s one of the smartest people I know, yet I still honestly have no idea how to teach him common sense in a way that sticks.

Later in the evening Z was doing her usual acrobatics on the living room rug and G said, “[Z], you’re a calamity waiting to happen,” and I laughed – laughed! – “Look who’s talking!”

“Well, mom, a calamity is also a great disturbance in the atmosphere…”

I think I am still calamitized. To see your child almost off himself in the silliest, most-preventable of ways is pretty devastating. Even more devastating: not knowing how to ensure it doesn’t happen again in a slightly different, potentially highly-avoidable way.

But we will keep trying.

I am so grateful this Thanksgiving that G is still alive, in all his huggable glory.

I am grateful for another chance to try to help him to gain some goldang sense.

Love,
Full Spectrum Mama



P.S. I am having weird formatting issues. My apologies to those who don't enjoy reading in this format...As you may have noticed there is one portion of this post that is in my old school format. I do not know why...and can't change the rest without making blocks that cover all the words...Le sigh.


Thursday, November 20, 2014

DIFFERENT

I recently read a book review by a person with sensory processing differences bemoaning a new compilation of essays by people on the spectrum as basically all stuff she’d heard before. It’s true: so many blogs and books are about similar things. Still, as a teacher (of yoga as well as academics), I know full well that it can take a lot of repetition for things to get through to people.

Another point in favor of repetition: Sometimes hearing things slightly differently, or from a different source, makes all the difference. I still remember the first time I really heard a yoga teacher say, “breathe deeply,” despite the fact that I’d probably been instructed to do so a bajillion times before. A particular iteration just might be the one that - finally, truly - gets through to someone.

As well, I applaud the normalization of the conversation itself! Another post about why someone needs earplugs or a weighted blanket or a sensory break?…Sigh? Or be glad that these adaptations are being integrated into the realm of “whatever” (as opposed to “weirdo-land”)?

In that vein, I offer my take on families and friends learning about difference:


A friend posted this question on facebook:
 ·
Hey friends, I'd like to know how you talk to your kids about people with intellectual and developmental disabilities. I'm finding the "difference" language, which I generally like and feel is empowering, to be somehow problematic.

[Her son]  knows that there are lots of ways people can be different, that some people are born different and some people look or act different because of something that happens in life (like veterans who use prosthetics). If I know someone's diagnosis (like Down's Syndrome), I use that in a matter-of-fact way, explaining what it is and how it happens.

The issue is when I don't know what someone's difference is diagnosed as, but I want to talk about that person with [son], so he can be sensitive to them. I want him to know it's okay to ask me any questions he might have. I don't see how he can stand up to any bullying of kids who are different if he thinks it's something so shameful we don't talk openly about it.

Thoughts? Advice?


Here’s what I said [combined and slightly edited for clarity]:

Great question and obviously one we deal with for a variety of reasons and in a variety of ways in our family. I do agree that a matter-of fact attitude is so important in most observation of others. Anything from "Oh, so and so sometimes shouts," to “Yup, looks like that kid has only one arm…” to “Yes, some people think it is important to wear clothing with a brand name on it,” can be shared in a neutral and implicitly inclusive way. There might be some judgment or question appended – “Does that hurt your ears?” “Do you think brand names are important?” “How do you think she feels if people stare at her?” –  that is likewise implicitly inclusive in that it does not intentionally refer to the “normalcy” of the observed trait.

One major caveat when it comes specifically to “disability:” Many people one might label as disabled might disagree with that label. They might feel they are differently-abled, or even superiorly-abled, or completely normal in their own way….

Because there are two key underlying things here:
how people see themselves
and  
how they are seen by others.

Obviously you want [your son] to know that all beings are worthy of kindness and respect (I hate "tolerance" [although I know it's meant well in theory, I find it condescending in practice]) including himself (who, as a male of color, will have his work cut out for him in some arenas...). This kindness and respect model encompasses both how he sees himself and how he sees others, and naturally integrates how others themselves might want to be seen, right?

What I try to convey is that Everybody is different...and everybody is equally worthy of kindness and respect. Having an autistic kid and a kid of color that's already been kind of an inevitable issue and we have our teachable moments at home as well as on the town. Sometimes they are painful. (And, by the way, there are those rare exceptions to these ideals of neutral observation and kindness and respect for all: those sorry-as$ people who do not treat us or others with kindness and respect [because they are “hurting in their hearts”] need to be treated with kindness and respect from a very long distance…)

I guess this is a long-winded way of saying:
if Everybody is different,
then "different in the way her mind [body, etc] works" or "from a different
culture" (or whatEVER)
becomes simply one difference among an infinite realm of possibility.

It’s a pretty ordinary point for those of us accustomed to daily life with “extraordinary” differences in our midst. But the implications are grand: with everybody being different, there is no homogeneous “normal” against which we all must be judged.

Love,

Full Spectrum Mama

Tuesday, November 11, 2014

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
  1. 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)



Thursday, October 30, 2014

AUTISM, EMPATHY, JUSTICE & LOGIC – A NEURO-MOMENT


My gal A and I love to have Spectrum Fests at a nearby lake where we talk feminism and injustice (our shared special interests) and our boys try to work out how to play together when their special interests don’t match. These are special times for us because once the school year hits the fan we both get pretty buried. A is a single Mom with a son on the spectrum. She used to be a student of mine at the Community College and is now about to graduate from a Seven Sisters college via its 100% full-scholarship program for non-traditional students. Go, A!

Last summer, A told me about a study she’d read claiming that logical people actually have more interest in justice, and tend to act more from the impetus of justice than do less-logical people. This made sense to US, as logical, spectrum-y, eggheaded, highly empathetic people. But it flies in the face of a lot of allistic ideas around autism.

The article, “Concern for justice linked with reason, not emotion,” contends that those of us who are “cognitively driven” tend to make the sorts of  “sophisticated analysis and mental calculation” that lead us to act based on logic rather than desire.

In other words, we don’t do kind things because we feel we should because it would be “good,” but because we know we should because it is right. That type of motivation has been shown to be significantly more compelling than emotional incentives. It leads naturally and inevitably to increased justice-orientation – and, thereby, to an increase in just actions.

Reason – a.k.a. logic – is the enemy of moral relativism as it is often used: as a tool for justifying asocial desires and actions. By asocial, I refer (perhaps somewhat polemically) to desires and actions that increase inequality and injustice. I contend that my logical nature, and that of most of the other spectrum-y people I know, precludes judging such actions as acceptable.

One of the many, many benefits of being a Professor of Ethics is learning to distinguish empathy from moral relativism. I’ve always felt that the gross disparities in peoples’ lives were unfair – and resented the attempts of people I saw as privileged to equate their problems with those of others who clearly – to me – had harder lives. Empathy means having compassion – literally, with-feeling – for someone; it means understanding them as best you can and, to a reasonable extent, acknowledging their concerns. It does not mean acting as if all struggles and challenges are equivalent – or accepting cockamamie, hypocritical excuses for what basically amounts to doing whatever the heck one wants. As Albert Einstein (a beloved Aspie role-model and ethicist, among other things) said, ““It is abhorrent to me when a fine intelligence is paired with an unsavory character. Logic precludes using intelligence to justify selfishness, or to equate the inimitable.

Mundane example: I recently mentioned to someone that there’ve been times when I’ve gotten upset in the grocery store because of money issues. They were sympathetic but then added, “Then, once you have enough money, you might start to feel guilty about having more than others, or have a hard time choosing what to buy!”

Um…no? Not. Equivalent.

It seems...logical to assume that if one has more than one needs one should do something about that rather than "feeling guilty;" and that the luxury of choice is a gift, not a burden (and, if the latter [?], not one that should be publicly bemoaned).

When A and I sit around discussing --  and, okay, sometimes bemoaning --  our situations, I know she, as a single mother, has it harder than me. We both know if we were Black or transgendered or more differently-abled than we are (or any of the other ridiculous things that can label one around here and make one, therefore, to some, “less-than” or “weird” or “automatically criminal and/or stupid and/or degenerate and/or inferior and/or, at the very least, suspect” in ways that limit opportunities and inclusion) it would be harder. That’s just logical! I think I have said this before: the only people who ever say stuff like “it’s all relative” are those privileged enough to have that belief and clueless enough to express it.  Most of us know better – and we’ve learned the hard way.

I make this point not to punish all the annoying people who think they have it sooo hard and don’t. What I want to do is draw a link to the sorts of persistent economic and social injustices that are fundamentally grounded in these types of self-rationalization – and that are typically unavailable to deeply logical people, including many on the autism spectrum.

Logical people just can’t get around numbers. If Person A has a salary of $200,000 and their “lifestyle” demands a new car every year and Person A is not logical, Person A can say to herself, “I need this new $30,000 car,” with no qualms whatsoever about those in need, such as, say, Person B, who makes $10,000 a year and is struggling to feed her family and has a car that barely functions. Person A can tell Person B, “It’s all relative.” But Person B, if she is logical, logically knows this is not true: A working car is a working car. $1=$1. $30,000 can feed four families for a year.

…Logic.

I like to believe that a logical Person B, if she somehow secured a job making $200,000 a year, and was in the same situation as Person A, above, would use that $30,000 to help those in need rather than to buy a new car because it is reasonably the right thing to do. A and I sure would. We don't just bemoan. We also plan for the day when we will be better able to help others. Those are our Special Fantasies. 

…Logic,logic, logic.

Truly logical people cannot ignore the fact that torture is torture:

When Dick Cheney calls torture ‘enhanced interrogation,’ it doesn’t make us understand torture in a different way; it’s just a means for those who know they’re doing something wrong to find a phrase that doesn’t immediately acknowledge the wrongdoing…
Whatever name Cheney’s men gave torture, they knew what it was. A grotesque euphemism is offensive exactly because we recognize perfectly the mismatch between the word and its referent. It’s an instrument of evasion, like a speeding getaway car, not an instrument of unconsciousness, like a blackjack.”
Word Magic,” by Adam Gopnik in The New Yorker 

Ostensibly, the more logical you are, the more you recognize this sort of internal, mutual and/or institutional subterfuge; ideally – and in fact – logic thus makes one less prone to evasion, rationalization, justification….

Truly logical people know, logically, that there is plenty for ALL on this planet, if we omit greed on the micro (personal wealth hoarded and/or spent on thing after thing) and macro (nationalism, imperialism, huge corporations oriented primarily toward profit) levels. I am aware that’s not going to happen right this very minute – tho A and I wish it would! – but what if, bit by bit, people and institutions became more logical, and thereby more justice-oriented? What if empathy was linked primarily to real-life actions and choices that actually promote justice (rather than to a nice-seeming attitude)?
  
It makes me bonkers when allistic people assume that autistic people lack empathy. Here’s just ONE reason why:  for many of us, logic is linked to empathy as a value that must be enacted, rather than as a feeling that may be ignored – or rationalized away. Some people on the spectrum may seem self-centered, focused on their Special Interests and/or socially inept, but their literality and logical-tendencies typically make them among the most fair, just, unselfish, empathetic people around.

Love,
Full Spectrum Mama

P.S. This is the Second NEURO-MOMENT. Read the first here



Wednesday, October 22, 2014

BLACKINESE

Pardner grew up in predominantly African-American neighborhoods. I was born in Panama and grew up spending time in Panama City and the Darien jungle town of La Palma (and in the interior, in smaller indigenous villages), usually being the only white person around besides my father. My godfather was an Emberá Cacique (the Emberá are the indigenous people of that region; Cacique means chief). The population in La Palma consists largely of Darienistas – descendants of escaped African slaves.

So Z’s New England-based family is a lot less super-White-rooted than most two-White-parented families around these parts….But that still doesn’t quite explain why she thinks she’s Black.

Z was adopted from China and is of – so far as I know and can tell – entirely Chinese ethnicity. When she was a baby I often thought she looked as if she could have been Emberá, but this resemblance has diminished as she has grown older.  In any case, I’ve always made sure to have positive representations (books, music, art) of people of all shapes, sizes, abilities, neurologies, and skin tones around the house. I try to celebrate a variety of cultures and perspectives. My goal has been not so much to make Z aware of being special (because she is Chinese, or was adopted, or…) but to teach –sometimes without explicitly doing so – that all people are inherently valuable.

For example, here are her favorite dolls:



                            




   
Figure I – Z’s Full Spectrum of Dolls









“Cinderelly,” far right, is a little hard to explain. Something involving Grandparents and a very headstrong young lady. Otherwise, as you can see, we have a very inclusive and diverse doll family. “Donna Poodle Itchy,” center, who is of Chinese descent, is Z’s favorite doll baby, but she loves them all. And, I suppose, feels ethnically connected with them all as well: she knows she is from China, her parents are White, and she is, apparently, Black-identified.

 I’ve heard her telling people several times, “There were only two Black kids at [her old school]. Me and [Black person].”

And check out this Thank-You card she – who has warm beige-toned skin - made for her best friend, who is from West Africa and has very dark brown skin:



                             Figure II – Thank You Card (Self-Portrait by Z, with her Best Friend)

Many, many moons ago, I worked at a fabulous organization called New Jersey S.E.E.D.S.  with the man I (along with his four sons, and I bet a few others like me whose lives he’s touched deeply) am now privileged to call “Dad.”* There was a student in our program who was half Black and half Chinese and called herself “Blackinese.” I’ve never forgotten the pride this student had in her voice when she explained her heritage, nor the excellent word she used to encapsulate that heritage.

I’ve been reluctant to too-strongly correct Z on her identification with other people of color of (speaking generally) a different color because it does seem to be a very positive thing for her. She is privileged to live among many terrific role models of all sorts, and in a progressive, inclusive community where being a person of color is a plus (ideally, in my humble opinion, it should be a neutral, butanyway…).

So I guess she’s just Blackinese.

Love,
Full Spectrum Mama


* Here’s what this wonderful man said when I asked him how he identifies himself ethnically as I began this post:

Hi [FSM],

Jesse Washington once asked me to describe my race in six words. I answered, “Race is a fiction; I’m black.”  

I do not say African-American because all of us come from Africa, some simply left the Motherland later than my ancestors did.  If we are simply African apes my ethnicity is special because I identify most with blacks worldwide.

Love,
[“Dad”]


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