Would You Rather…II

Many people worry. I don’t remember worrying much before becoming a mother, but back then I used to, how you say, “sleep.” All parents worry, I know. To be sure, we all have different worries -- but one thing we do share for sure is a novel and intensified capacity for terror. It’s almost as if when we become parents – however our families are formed – many of us develop an extra mental organ (or augment the one we already had) …Let us call it the extrapolator-catastrophizer gland.

The frenzied activity of this new (or newly expanded) organ is certainly enough to lead to a wide range of emotions, or what Pardner and I refer to as WROE (pronounced “roh”). After all, our children are our hearts walking around -- outside of us! -- in an uncertain world.*

I imagine the average parent shoves elements of many of the following sorts of concerns into their extrapolator-catastrophizer gland:

Happiness

Money

Manners

Grades

School Quality

Family Issues

Perfect Parent, the attempt to be

Health

Friends**

Popularity

Safety

Success

Bad People, contact with kids thereof

College

Athletic Ability

Some parents with “special needs” children might consider themselves lucky or wish to have these concerns, rather than worrying about, say, whether their child will ever walk or read or live a full, satisfying life. Some parents of children who inhabit areas of the spectrum other than “normal” may share these “normal” concerns, too, of course. In any case, although all parents -- and some people -- share this capacity for worry, I have to speculate that the extrapolator-catastrophizer gland of parents with “high needs” or “special needs” children may be slightly more taxed than average.  But let’s explore this assertion – because I am not actually sure it is true.

 

Figure 1: Venn Diagram: People, Parents, “Special Needs” Parents, Gland

Above, we see the scientific, spectrum-based proof that we all share more than we differ. I think within that context it becomes acceptable and safe, even useful, to make distinctions.

Relativism makes the Ethics teacher in FSM nuts. Of course context has weight, but some things just are right and wrong. Sure, everybody has their troubles, but some things Just Are harder than others. I have friends who are raising children who may never talk, never interact…who try for not days, not months, but Years to communicate with their child(ren) and cannot get through…and they keep trying. I have friends who are raising multiple, non-typical kids on their own on practically nothing. I have been a single mother. I have been broke. I have been a single, broke mother of two extraordinary and challenging children. I’m neither broke nor single now and it’s just plain easier. I am not saying it’s better, necessarily, but on a purely practical level it is, without question, more easierer.

My dear friend Noodle has two children. Her son is a well-adjusted, neurotypical, socially at-ease, sweet, lovable dude, and her daughter is a brilliant, non-neurotypical, evil mastermind, Goth genius, Feminist Riot Grrrl artiste. Noodle says parenting her daughter is simply exponentially harder. She worries about her more than she does her son. Period.

This may be partly because there is more material for to fret. For example, when your child is neurologically inward-focused, you tend to catastrophize about basic practical matters – safety, hygiene, self-sufficiency. When your child is delayed in developing a superego (a.k.a. conscience), you tend to extrapolate to larger potential dirty deeds. Think “Mean Girls.” Think Enron. 

These concerns do not just regard individuals or families, but society as a whole. For instance, in a piece on last week's "troubling" new CDC figures on autism (1 in 88 children today is on the autism spectrum; 1 in 54 boys) commentators on today's "On Point" (http://onpoint.wbur.org/2012/04/02/autism-numbers-skyrocket) discussed some of the challenges in parenting "special needs" children and the need for supporting parents, children and communities now -- and as these many, many children make their way into adulthood. 

On the other hand, there are people with traditional two-parent families, good job(s), plenty o’ dough and neuro- and psychotypical children who are consumed by angst.

Maybe the size of each individual extrapolator-catastrophizer gland is set – and we each worry according to its putative capacity. Or, most likely, there is a Full Spectrum of extrapolator-catastrophizer tendencies as well. If, for any given individual, we take into account the specific activity level of their E-C gland and their actual life concerns as input I think we are going to need a matrix here.

                      Figure 2: A Matrix: Extrapolator-Catastrophizer Gland Activity/Situation

My worries about G being able to live the life he wants to live and Z not becoming a grifter feel like they would fit into that matrix in a reasonable spot. I hope that Z will allow herself to feel and not just Rule, but I don’t worry over her popularity or job prospects.  I hope that G will develop a capacity to Pay Attention to the World, but I don’t waste time worrying over whether he is a sweet, honest person.

My worries are not entirely coincidental with the most regular concerns, but they are also distant on the spectrum from both mountains-out-of-molehills AND the concerns of those who deal daily with challenges much greater than mine.  It’s a decent place to be, all things considered, so let’s proceed from the pity party to the party. I suspect laughter may be the key to moderating the effects of an active extrapolator-catastrophizer gland.

Want to make me laugh? How's about a game of “would you rather…”

Would you rather…eat frozen moose poo shavings*** garnished with your choice of grubs (mashed, guts oozing [but, possibly this is good, dead] or live and writhing) or do a modern dance interpretation of your favorite poem in front of all of your facebook friends?

Would you rather…eat a puss-smeared band-aid that you found on the subway floor or drink dumpster juice from the bottom of a smelly kitchen dumpster that has been out in the blazing sun?****

Would you rather…be stung by an angry hornet or drink a cup of sour milk with a straw made of a rotten old bone?

Would you rather…have the kids you have – with all their challenges and quirks and catastrophizer-extrapolator exacerbating facets – or some other kids (or no kids)?

Would you rather…be yourself or someone else? Live now or in the future…?

Extrapolating and catastrophizing,

Love,

Full Spectrum Mama

* Thank you, Elizabeth Stone, for putting this concept into words!

** I love this quote re: friends from Ask Moxie (http://www.askmoxie.org/2012/03/qa-helping-your-child-develop-confidence-and-become-a-friend.html): “I would go through another 10 unmedicated labors, 20 bouts of mastitis, two solid years of potty training, and an infinite number of sharp jabs to the kidney in the middle of the night if I never had to worry about my child making friends.” Thanks, @Elysia, for the reference.

***"Humorous" moose reference: quite likely evidence of living too long in Vermont.

**** This entry courtesy of a reader with a very sick mind. When I asked, merely in passing, if she had any good new “would you rathers” her response could barely be contained in an email.

Vocal Fry vs. Gortles

Z was waiting for me at pickup the other day with a big, saucy grin on her face. She held up the latest Scholastic book order and announced: “Justin Beaver is in here?…He’s HOT!”

In a sudden transformation as surprising to myself as to Z, Full Spectrum Mama turned into a fascist, super-conservative, sexist anachronism. I heard the following phrase burst from my formerly liberal lips: “You are! Five! Years! Old! Okay, Six! You will NEVER say that word again!”

My rule of fear and oppression complete, Z felt able to respond: “Um, okay Mom.” Eye roll.

Then, resisting the urge to prove that ***I*** am the one who knows not only how to Read but to correctly pronounce Justin Bieber’s name as well, I took a step back to dispassionately analyze my reaction.

The first language Z heard was the local dialect in Fuzhou (a.k.a. Linchuan), in Jiangxi province in China. I am sure she also heard some Mandarin (which I have continued to integrate into her life, though not as much as I’d like). Until she was almost ten months old, she’d never heard a word of English. Nonetheless, Z has been speaking it in complete sentences with perfect diction since she was 18-months old.

What is truly remarkable about her speech to me, though, is the apparent savviness of her tone. She comes across as authoritative yet casually chatty -- much like a clever, popular, connected teen. Perhaps the most obvious element of this mature tone is how she uses the ultimate tool of with it girls everywhere: vocal fry (http://gawker.com/5867222/vocal-fry-is-the-hot-new-linguistic-fad-among-women), see also (http://www.nytimes.com/2012/02/28/science/young-women-often-trendsetters-in-vocal-patterns.html). Vocal fry sounds rather like a crumpling up of the inquisitive at the ends of her sentences. It’s a mini-hipster-rumble that signifies at once being totally in-the-know and a lack of caring too much.

G rumbles when he talks, too. Because he has some low muscle tone, phlegm often catches in his throat when he speaks and he makes a slight gurgling sound behind his words. I call this “gortles,” as in, “Honey, clear your throat – ya got gortles.”

Low muscle tone also results in lax enunciation of many sounds. This, coupled with his unique cadence -- Pardner often notes how G “sounds like John Wayne” – makes G sometimes hard to understand, particularly for other children.

G has been receiving speech therapy through his school since he his IEP (Individualized Education Program) was initiated years ago. His speech therapist initially maintained that G would “never” make much progress in his speech. I have been able, however, using a rewards system that actually matters to him (pokemon cards), to ease him into the habit of pronouncing many sounds correctly and he has become much easier to understand.

Recently, our dear friends Shu Shu Chuck and Fern Ayi (Auntie [in Mandarin] Fern) came to visit us. They brought lovely educational gifts for the kids and spent lots of doting time with them. Fern Ayi, was even kind enough to get up before dawn with them (“Would it be okay with your mom if you got up?” “Yes!!!” [“No.”]) and feed them bottomless bowls of cereal.

At brunch on Sunday, Chuck noted that same John Wayne cadence to G’s speech. I immediately began to explain that we are working on his speech, that he has help at school and so on.

Chuck looked a little sad. “Why?” he asked. “Why try to change what is unique about him?” He said he thinks G is a “wonderful” kid just as he is and decried our culture’s tendency to try to make everyone the same, and to treat difference as if it is a sickness.

I agreed with him wholeheartedly. Without really considering my audience, I had been making my standard excuses, not really lies per se, but statements intended to placate others who may be critical -- when in fact I think G is PERFECT EXACTLY AS HE IS.

Now to give some legitimacy to Chuck’s words: he is none other than Chuck Hoberman (http://www.hoberman.com/home.html), an amazing inventor and brilliant thinker. Among other things, Chuck designs marvelous toys for curious people of all ages. I think his life and oeuvre give great weight to his contention that we should NOT necessarily try to “normalize” our children’s every atypical quality.

Speaking of normalization, if truth be told, I’d like to ease Z’s speech away from the conformi-cool area of the speech spectrum:

The other night, we went to the local café for pizza night with another family. The sweet, smart mother of Z’s good friend brought her two girls - Z’s good friend and friend’s little sister. I brought along G’s best friend too, to be fair. (The injustice of unequal playdates is one felt and expressed powerfully across the FSM household spectrum.) The boys had their own table and the five of us girls sat at another.

I am always a tiny bit wary of consorting with intact (i.e. not gobsmacked by divorce) families who seem like “normal” people with seemingly neurotypical, psychotypical kids. I am well aware that “seem” may well be the operative word in most cases; also, the above describes most of my friends…I am just setting this story up here. Our family is blended in several more ways than average and I hope I may be forgiven a smidge of healthy, wholesome paranoia.

At the boys’ table, G was talking about one of his favorite subjects, marine biology. He kept referring to “aminals” and his friend would get frustrated and correct him. After resisting the urge for some time I finally butted in, letting G’s friend know that I thought saying “aminal” was “pretty darn cute.” He remained unconvinced. “I think it’s annoying,” he informed us. G’s face fell.

Over at the girls’ table, Z was holding up her knife and fork and looking through them to frame my face. Then, still looking at me, she began to move them around in a kind of criss-cross pattern. In her perfect, angelic, singsong voice, she began to sing a perfectly enunciated little tune: “Cut, cut, cut…Cut my mommy’s face.”

The mother, who was seated next to me, leaned in and asked, very quietly, “Does she have violent tendencies?”

At that moment, I wished for Z to be much, much less comprehensible.

Not for the first time, I found myself simultaneously
1. wishing two opposite things for my two dissimilar children: that G’s speech would be more clear and compelling, and that Z’s speech would be less clear and less compelling; and
2. wishing that in each case I wasn’t wishing what I was wishing.

Despite knowing it was a kind of funny situation, and even with all those nice people around me I felt very lonely just then.

Love,
Full Spectrum Mama

A Spectrum Rainbow

Let’s scratch that linear spectrum from my first entry. I’m feeling now that a better visual model would be a circular rainbow pie chart deal, with everything connecting in the center and closely related qualities connecting along the perimeter.


Figure 1: An Amended Spectrum


One nice thing about this new and improved circular spectrum is that proximity can be quite telling. I pointed out that the difficulties in connection on the far end of the autism side of that original spectrum reminded me in some ways of the inability to connect on the far end of the attachment disorder side of the spectrum. Within a circle, these two pie slices – far as they might be from “normal” on the perimeter -- might themselves be quite close, with some “unknown” slices in-between. The “normal” slice might be on the opposite side of this thus-far-undefined area.

Here are some ideas for some other Full Spectrums, a veritable Spectrum Rainbow, with illustrations from my own family:


A Dance Spectrum
We do a lot of dancing in our house. All sorts of music. Sometimes we’ll even have a dance-off! I could expound at length on kinds of movement, hip-shakers and non-hip-shakers, rhythm, etc. but it basically comes down to this: If Z is Beyonce, G is Steve Martin in “The Jerk.” ‘Nuff said.

On second thought, it occurs to me that although I personally think I would fall closer to Beyonce than the Jerk on this spectrum, G definitely fancies himself quite the dancer too. Hmm.

A Spatial Self-Awareness Spectrum
Part of my project here is to distinguish and clarify, but I do so more in the ultimate aim of connection than separation. For example, most everybody has some sort of self-awareness in space, so that is a connection. Yet, for a child with Asperger syndrome, self-awareness in terms of place in the physical space one inhabits is fundamentally very different from that self-awareness for a child with an attachment disorder.

I would place Z in a position of extraordinarily high, vigilante-esque self-awareness that is connected integrally with an extraordinarily high level of awareness of others. G would seem to land close to the opposite side of this pie, with little consciousness of his weight and size and position, or of his spatial relations to others.

I am not a neurologist or psychiatrist, just a Mama wondering at and about her children (and children [and people] in general). I do wonder if this self-awareness thread relates in some way to the ways severely autistic children and children with severe attachment disorders may seem similar in their apparent disengagement with the outside world? How might their awareness of self-in-space and self vis-à-vis other people differ? How might it be useful to think of self-awareness in space and in relationships as a way IN to children’s minds and hearts? To healing, where needed?

This spectrum emerges as useful in helping me see that I, as a Full Spectrum Mama, need to help each child move closer to a healthy level of self-awareness in this regard. That’s not always true: sometimes I want to nurture that distance from the “normal” slice of the spectrum. Here, however, I would like to help Z relax her vigilance -- and G to become more attentive.

A Scotch Tape Spectrum
Some people feel perfectly comfortable using reams of scotch tape. Who are these people? Oh, pardon. I meant to write that there are different ways of approaching scotch tape use. Some of us view scotch tape as a precious, non-renewable and expensive resource that must be monitored and used in minimal, just-barely-adequate increments. Others have a “normal” take on tape. They use it when they need it, a reasonable amount…and buy more with little or no angst! And, much as it pains me to admit this, there are those who are quite “free” with their usage. [No need to let me know if you fit in this slice. I accept you. I just do not want to know.]

Z, as you might imagine, is highly responsible and abstemious in her tape-related-habits, even unto the point of Putting the Tape Back; G is a tape-waster par excellence. Left to his own devices, he would use tape for many, many non-approved purposes – and I would never be able to find the roll in any “emergency.” From time to time I have generously bought him his own roll, said roll never to be seen again.

Matters of scotch tape and self-awareness are related, yes they are: ideally I’d like to assist Z in relinquishing her control-freak position on this spectrum, while gently nurturing G in his scotch-tape consciousness.

A Style Spectrum
Here we have Z, dressed always with a flair and pizzazz and ultra-originality that nonetheless manages to scream, “I have fantastic taste!” She may be wearing seven necklaces, but they perfectly complement her nine bracelets. A cape? But of course. And matching veil. Anything she puts on, Z instantly elevates and imbues with sheer gorgeousness and chic.

Next to Z, we have people with some style and then we have a series of “neutral” or “regular” style slices eventually veering toward a lack of style…and then we have G.

My son, despite being conceived, gestated and living the first few years of his life in the East Village, has never looked right in anything fey or trendy. Something about him calls for classic, regular, GUY garb. When G was a baby, we came to call this genre “football-teddy bear clothes.” I have recently managed to sneak him into a skinny cord without too much protest although he has a really, really hard time getting in and out of this particular pant. In fact, G’s pants are usually pulled up to just under his nipples, His shoes are probably on the wrong feet. Anything he puts on looks like it was put on by mistake. Obviously, we are moving away from “normal” here…but where are we going, exactly?

I contend that we are actually edging back closer to the high style slice! I further contend that G may well be edging into what we, in our house, call “meta-cool.” He is so on his own fashion planet that he may well have crossed the pie-border into the slice just adjacent to Z’s super-flair section!


Figure 2: Flair de La Z (with brother)


A Sexuality Spectrum
The increasing acceptance of a rich, full spectrum of sexuality, gender identification and sexual orientation seems to me to be one of the great leaps forward of this new millennium. Nevertheless, so far, my kids have not been taking advantage of the wide range of available options.

We live in a super-liberal area where I would wager the vast majority of parents would answer the questions “Can girls marry girls?” and “Can boys wear dresses?” in the enthusiastic affirmative, Still, Z lives in a pink world of princesses and fairy costumes and Prince Charmings. NB: her favorite doll is named “Donna Poodle Itchy,” which does give me hope for her independent future.

When G was under one year old, he leaned over from his clip-on high chair and kissed a female model on the back of a magazine that was lying on the counter. Although he does sometimes hug his (male) best friend a leetle too long, he seems to be firmly on the hetero slice of the pie and has "always" wanted to “marry” a gal he met in kindergarten.

Wherever they ultimately end up on this spectrum is just fine with Full Spectrum Mama; the only remarkable thing here is that this is one area where Z and G reside in the most average part of the spectrum.

A Sassy Spectrum
Z is monumentally sassy. G is not, in any way, sassy. When I imagine a full sassiness spectrum with these two opposite slices, one intervening side might be varying degrees of silly sass, and the other side might be mean sass. Having abandoned all hope of reducing Z’s sassiness quotient, I now try to steer her more toward the silly side and away from the mean. And I know it wouldn’t hurt for G to develop a sassy quip or two. We’re workin’ on it!

We all fit in somewhere -- and we are all connected.

Love,
Full Spectrum Mama