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.

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

Full Spectrum Mama - I

There is a range of ways of being known intimately to me as a person, woman and mother, a Full Spectrum, if you will. As a mother of two high-needs children, I need to access a Full Spectrum of being in order to parent my children. That seems to me only natural: we as individuals and families manifest so much that is unique - and so much that we share. As well, in the larger picture, human beings embody a vast, diverse ocean of commonalities and divergences.

For some time I have been thinking about the spectrum of human beings and in my mind simultaneously making more connections and broadening what we are offered when we are diagnosed as different…or have children who are diagnosed as such – or we or they are perceived as such…or we or they feel different. Where do we fit in? I see rainbows and oceans of interrelations.

Without – please! -- assigning any value to the various labels, imagine the Autism Spectrum. Let’s say it extends from mild Asperger Syndrome to PDDNOS (pervasive developmental disorder, not otherwise specified) to severe Autism, sometimes presenting with other conditions. And then let’s place Sensory Processing Disorders just outside of this spectrum, to the left. Now let’s imagine that just as this spectrum extends to the right, it also extends to the left, and this hypothetical spectrum runs from so-called “normal” people (more on this later) near the middle, just beyond the “sensory processings,” to mild attachment disorders to severe attachment disorders.
Figure 1.

If I had better computer skills, this would be So much more luscious, but you get the idea. My intention is to show connections, more than distinctions.

In any case, I have two children, and I think of them at fairly opposite ends of this spectrum. My son has Asperger Syndrome and my daughter has an attachment disorder. I don’t want to in any way exploit them, so this blog will remain somewhat anonymous and I will refer to them only by initials (um, the wrong initials). I know there are other people out there who think that the wide range of humanity is fascinating; and I know there are other parents out there stretched thin. You are my people!

Son, G, was born under challenging circumstances in New York City weeks after 9/11. He was on a respirator in the Neonatal Intensive Care Unit with severe meconium aspiration for a week. He is now ten years old. He is the kindest and most caring child I have ever known. Generous to a fault...and deeply socially awkward. He talks really, really loud and basically wants to talk about his special interests at all times. He would give you his most treasured possession in a heartbeat.

Daughter, Z, was adopted from China at nine months of age. She is six years old now, and stunningly beautiful, with the most perfect features I have ever seen on any human being. She is incredibly intelligent and observant. She has a terrific sense of humor and exudes glamour. We call her mini-Satan. And by “we,” I mean Me, because, you see, these two children require Two Completely Different Mothers.

So that is what you will find here – stories about my daily multiple-personality life – and how I mother the Full Spectrum. I aim to be inclusive and non-judgmental and never, ever sanctimonious…but you may find me irreverent. I will tell you why we laugh and cry around the house (oh, and in public, for better or worse!) and about our mishaps and triumphs and would love to hear your stories too.

Love,
Full Spectrum Mama