Showing posts with label asperger. Show all posts
Showing posts with label asperger. Show all posts

Tuesday, May 8, 2018

GOODBYE, NAMEY OLD NAME THE NAME

Dear Persons,
There’s something I’ve been struggling with for some time now.

To make it less loaded as a puzzle, let me start with a lighthearted example. Let’s say there’s this thing we call a chipmunk. We use that name to refer to a particular type of creature, a small, orange-y, striped, cute one; and to distinguish it from the larger, less-cute (to some), similar-but-usually-grey animal we call the squirrel, not to mention any number of other rodents and animals. It’s useful to have a shared name for this distinct creature. And we may even have other names for individual chipmunks, such as “Little Jerk,”  and “Garden *&%#$.” But we always know what chipmunks are — and what they are not

But what if we found out that the very word chipmunk was problematic? What if chipmunk was another name for, Oh, I don’t know, a possible Nazi-sympathizer

Besides it being a commonly-understood term — and an erstwhile diagnosis/label (one no longer widely accepted in the professional/medical/neurological sphere) — why do we use the word Asperger? I had to take a hard look at my own usage and I realized that — although I do avoid the term “high functioning autism” (or HFA), because I think it has questionable implications and is implicitly comparative of human beings — I have typically used Asperger somewhat in the same way. That is, I have unconsciously used this term to make it clear that my son is the kind of autistic person who has special interests and above-average intelligence, etc. That was wrong of me — as continuing to use this term would be. 

At the same time, I also used the term to describe him because the general usage/understanding of this term really fits G as he is: highly verbal, quirky, not so great with social cues…But that’s not going to fly anymore. 

Autistic and on the autism spectrum seem fine to me, but a little too defining/labeling for day-to-day use (I do not like autism spectrum disorder as I do not frame different brains as inherently disordered!). From now on, I am going to use the term neurodiverse. Yes, it’s slightly meaningless (a la “tasty” — oooh, it has a taste!), but it neither refers to a kind of human being by the name of a criminal nor distinguishes between neurotypically devised “levels” of “functioning.”


Thanks and love,
Full Spectrum Mama


P.S. I completely understand and honor those individuals and organizations who’ve chosen to stay with this name, or who chose it prior to knowing about the complex history behind it. This is my choice, for myself. 


 
Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!


Friday, November 30, 2012

Speech – III/Tools - II


In “Laugh Like a…” and “Gortles vs. Vocal Fry” I began to write about the Full Spectrum of speech expressed by my children and our family approaches to some of our challenges in that realm. These include, on the one hand, exceptional sassiness or dorkiness of oral interaction styles and, on the other, widely disparate levels of verbal agility.

Here are two more topics to consider: repetition and volume.

G and Z loooove to repeat. Single words, questions, quotations, astute observations, not-so-astute observations, random sounds…all are fodder for extensive repetition. This shared habit is rooted in two very different sources: G’s mind seems to get drawn into a pattern - he’ll blurt out a word or phrase from time to time, sometimes for days, as the neural impulse strikes; Z likes uninterrupted attention, which speech can bring, but she also self-soothes – and learns --with patter.

We use the same tool inclusive of these two distinct contexts. Since it works well in our household, it just might work in a wide range of families. I therefore offer:

A Good Rule for Parents and People:
1.     The One Time Rule
Things may only be said ONE TIME.  If something is repeated, Mama – often in cahoots with the currently non-repeating child – may utter the powerful phrase, “One Time Rule”…as many times as is necessary.
a.     The Awesome [or insert your dreadful trending word here] Rule
Each child may utter the word “awesome” ONE TIME per diem.
For some reason, this has worked. Good thing, because we have yet to work out the Consequences.

Partly because of low tone, G also has issues with volume modulation. More specifically, he speaks very, very loudly, especially when excited (and he’s an enthusiastic guy). His speech volume is probably the single biggest obstacle to other kids’ acceptance and comfort in his presence.

When we are together as a family, I might say, “Stop shouting in my ear,” “Turn it Down, please,” or “I am RIGHT HERE.” I don’t want to humiliate him in public, though, so we have devised a sort of turning-down-a-radio-dial type motion that is meant to indicate to him that he needs to try to modulate his voice to a quieter level.

Alas, unless he is looking right at my finger, he doesn’t notice this signal! My gesture, then, gets bigger and bigger, progressing initially to something resembling the “cuckoo” finger swirl and then evolving, as it widens, into a one-handed version of Jazz Hands.

In contrast, and no, I am not making this up just to, as it were, fill my proverbial Spectrum, Z has issues with speaking at LOW volume. Specifically, she prefers to speak At All Times, and so, if she has been asked to be quiet, she simply speaks much, much more quietly, typically in a very special language of her very own. This brings us to:

2.  The No Poltergeist Voices Rule
If your attachment disordered, or otherwise anxiously garrulous, or perhaps even happily loquacious child has not stopped speaking in approximately seven hours (years) and if he or she insists upon whispering “ZI-guh-sa-ba ZI-guh-sa-ba” over and over near your ear while you are on the phone for Three Minutes after Paying Attention to her or him the Entire Day (or some similar situation), simply invoke the No Poltergeist Voices Rule.

This might work.

Jazz Hands!

Love,
Full Spectrum Mama


Monday, April 2, 2012

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.



Wednesday, March 21, 2012

Helicopters in Our Rainbow

G had a major project due last week. He was to create a poster to illustrate and outline a presentation on his research on Grover Cleveland. His written report had gone well, mostly because he enjoyed it, but I was concerned about this more public aspect of the work. Difficulties in reading social cues and a lack of interest in appearances, both aspects of aspergers syndrome, sometimes conspire in undermining G’s classroom endeavors.

Here’s a Full Spectrum question: how much and in what ways should we help our children with homework? There is a veritable rainbow of answers to this query. It’s an ultra-regular problem, but when a child has learning differences it feels perhaps even more confusing both vis-à-vis home and school. The spectre of becoming a helicopter parent is never far from parents of many “special needs” children. In school, because G has a diagnosis, some teachers may have lower expectations of him. Luckily this year, his teachers – who are wise, experienced and huge of heart – seem to get my boy.

So, home…and G himself. I know he is capable of doing just as well as other students (and even better in certain areas), but does G know that? Encouraging him to accomplish things on his own is one way he may gain this self-knowledge.

Tuesday Evening: The Project
I gave G some guidance, including drawing up a draft outline for him, in standard outline format (roman numerals, capital letters, etc.). Then I let him complete the poster on his own. Some (vast) part of me wanted to hover over him and make sure he made something that would measure up – by mainstream standards -- to the other kids’ work. But more than that I wanted him to express himself, and hoped it would build confidence and satisfaction to feel trusted and do a good job.

He proudly brought me his poster. He had entitled it, “Uncle Jumbo.” “Good start,” I told him. “Catchy.” He’d decided the day before that our pictures of Cleveland from the encyclopedia were adequate for the final presentation. He had affixed copies of these two small black and white pictures on an angle and his handwriting slanted precipitously likewise. The outline read from right to left. But he had lots and lots of information in there and had learned a lot and had a fine time doing so. All in all, it seemed he’d done a darn good job for a fourth grader.

Wednesday Morning: The Turn-In
My heart sank when I saw the other posters. Straight lines, multiple color photos and computer-generated text abounded. I knew no one could’ve worked harder or more earnestly on their posters than G had, but these looked so, so much more…professional.

As I walked back to my car after drop-off I suddenly realized that other parents must have been giving a lot more input to these projects than I had deemed appropriate. Basically, I had over-underestimated the “normal” level of parental involvement in schoolwork. Between parental non-involvement and helicopter parenting (and beyond) there must be a continuum of genuinely helpful help. I decided I’d missed the mark this time, and that I should’ve at the very least recommended straight lines.


Postlude: Tuesday Afternoon: Pickup
The kindergarteners all walk down the hallway carrying shapes made by linking toothpicks together with mini-marshmallows. Each child proudly bears his or her little diamond or square with the greatest of care.

G and his one friend (who is coming home with us) approach, having noted the marshmallows. I have a cache of vegetarian marshmallows at home and I promise to serve them as snack. I often agree to things I would not otherwise do in order to encourage this rare and precious friendship. Then I further agree -- again, against my best instinct -- that we can go straight home instead of going to the library to download extra pictures of Grover Cleveland for G’s poster (which is due the next day), the faster to eat marshmallows and play.

Next comes Z, sashaying down the hall with the most spectacular assemblage in her arms. Her marshmallow project is in a different universe, nay, a whole different Reality than the others. One of the great aspects of having a child who was adopted is one can really go to town with bragging: “Hey, I can’t take any credit but…this kid is spectacular, eh?”




                                                    Figure 1: Z, Marshmallow Mastermind


Hers was by far the most technically adept and visionary marshmallow project in the whole bunch. Z, while extremely clever and quick, is not generally the most assiduous student, so I reckoned the candy element was a key factor in the magnitude and fabulousness of her creation.

Later that evening, as G worked on his poster, I would read his report card to find he has been “off his game” this winter. He has been focusing more energy than usual on social issues – somewhat to the detriment of his academics -- because his one friend is so important to him. Learning to share this friend or to be apart from him sometimes has been a challenge – and a strain on both boys. I would realize that by caving in to not going to the library I had reinforced this trend.

Later that week his teachers would assure me that social tension is, for fourth graders, essentially “normal.” Social learning is something most upper elementary students are struggling to balance with academic learning as increased intellectual demands jockey with more complex social dynamics.

In the end, even after getting a look at the other students’ posters, G felt really great about his project. In the interest of more conventional success, I could have done the bulk of the work myself. Otherwise, even in the quiet, socially unchallenging environs of our home, no amount of friendly cajoling, firm guidance or menacing threats could have gotten G to produce a precision-masterpiece equivalent to Z’s for his presentation on Uncle Jumbo.

But…marshmallows might’ve worked.

Had I only known!

Extremely occasionally, Full Spectrum Mama discovers A Secret to the Universe. This is one of those rare moments. The secret is…Marshmallows. If all schoolwork -- all activities and interactions -- could just involve marshmallows, everything would be perfect. Sweet, soft marshmallows (vegetarian for us, please) could sweeten the toughest endeavor of any child (any person!) – and cushion the frequent falls of every imperfect parent (and other human people).

Love,
Full Spectrum Mama

Tuesday, February 28, 2012

"Laugh Like a..."

“Knock, knock.”

“Who’s there?”

“Interrupting Cow.”

“Interrupting Cow—“

“--Moo!”

If you don’t think this joke is funny, or if you think it should be told Only Once, you are probably on a different part of the humor spectrum than we are. Lucky you. We are a very corny, silly family with penchants for repetition and nonsense. Z’s sense of humor tends toward the witty, G’s toward the baffling and awkward; both love a good potty joke. As for me, sometimes I feel as a Full Spectrum Mama that if I am not laughing I might well be crying…So when my head is clear enough to make that choice (which is not a given), I choose the giggle. That shared sense of humor may well be our saving grace.

This happened when Z was four years old. In order for the story to make sense, a few preliminary details are necessary. First, we do not have any broadcast television and live in a pretty idyllic and sheltered rural area. Second, we do not cuss in our home. I believe I may have said the “S” word once or twice, but that’s it. I manage to eff up on a daily basis in plenty of other ways, but non-cussin’ is one area of success. It is possible that Z and G have heard profanities at their father’s house, but always as exclamations, never as vernacular. Finally, at the time this incident occurred, my now-husband (henceforth referred to as “Pardner”) and I were dating, and the kids called him “Shushu” (uncle in Mandarin).

We are at a cute little restaurant in trendy, charming New Hope, PA enjoying some adequate Mexican food on our way home from visiting with family. Again, Z is four, a sassy, going-on-25-going-on-75-four, but nonetheless she is barely as tall as the table at which we are sitting. Our little family – Pardner, G, Z and me – is enjoying some jovial repartee and eating tacos and sides. Z likes her food spicy and G likes his bland, so I have apportioned the food accordingly.

In my memory, I am looking at my yellow rice and lumpy brown pile of beans when Z turns to me and says, “Mama, Susu Pardner makes you laugh like a bitc#!”

I turn to Pardner, sotto voce, “Did she just say laughlikeabitc#?” I feel, simultaneously, a very wide range of emotions. The dominant feeling is: I am about to crack up laughing worse than ever before in my life in a way that will be highly inappropriate on many levels. Also, I will not be able to stop laughing, either, should I start.

I lurch into autopilot-damage-control: “Snitch,” I say, “Where did you learn that funny, funny word?”

“I said Bitc#.”

“Oh, hahahahaha, ditch, yes, that IS funny. Hahaha.”

“Bitc#.”

Has it ever hit you full on that your child, your tiny little child, is already much cooler than you ever have been or could hope to be? The best part was how she said it, all feisty and ghetto, and like she knew what she meant. Head bobbing a little from side to side and the pointed finger going. For real.

Let’s face it, hearing babies and little kids swear is funny. It just is. Cute, too. Yet of course Full Spectrum Mama has to protect her daughter from her own precociousness and from apparent insidious influences. As much as Z has seemed all her life to need nobody, nohow, she’s still a child and she needs guidance.

Somehow I kept a straight face. I used the famous parental move “ignore and move on,” (a.k.a. “Cuban Missile Crisis”). Afterward, I did do my best to figure out where she got the idea to say “laugh like a bitc#,” although I never did find out. I believe she has forgotten this particular phrase, though she still can be plenty fresh. I remind myself on the daily that Z may seem like a cooler, more socially-adept peer, even, ahem, someone who might’ve been mean to me in high school but – she isn’t. She is my little girl. So I need to be the grown-up.


I thought about “laugh like a bitc#” the other day when we were walking home from school. There is a beautiful forested area right next door to our house and I sometimes allow G to walk through it en route. That day he asked, “Mama, may I venture into the woods?” “Why, yes, my son, go in peace,” I replied.

Wonder where he gets his quirky turn of phrase?

G, a major bookworm from birth, has always talked as if he lives in medieval times, or is in a Poke´mon program (he sees them chez the ex). Back in preschool, he would literally ask the other kids questions like, “Would you care to engage in a playful interaction with me?” (Sample, highly effective Z preschool utterance: “Gimme that if you wanna play with me…whatever.”)

How did it evolve that my two children – who have the same parents* -- express such a Full Spectrum of speech patterns? Ways of speaking -- how we tap into the vernacular (or not), how we draw from our reading and other parts of the world around us…how we hit the coolness nail on the head or NOT -- can be seen as more Full and rich Spectrums.

(*Oops, I totally forgot that Z was adopted for a moment there – but let’s agree that certainly she has had the same parental environment as G since she was 9 months old…)

Z remains the sharp-witted queen of kindergarten, whilst G’s courtly language flies about as well in fourth grade as it did back then. Oh, someday he will find his tribe. But…Goddess? PLEASE get him through middle school with his sweet soul intact. And please, please -- I know it is not my girlbaby’s job, but she can handle it -- make Z protect him once they are in high school together.

I will do anything!!!

Laughing like a bitc#,
Love,
Full Spectrum Mama

Tuesday, February 14, 2012

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

Friday, February 3, 2012

Control and Therapeutic Parenting

Maybe it was the “vacation” weekend on the Cape when I spent two out of three nights in the car with Z because she refused to stop screaming and was keeping other motel guests awake. And didn’t care. At all. Didn’t care about her crying, sleep-deprived big brother, or even the entreaties of her beloved “Papa” (I believe her exact words were, “Shut up, Papa!” {NOT standard words in our family}).

Or maybe it was when we were in the car and I had a migraine and Z was having a tantrum and I got her attention by explaining very, very quietly, that Mama had a migraine and that “every sound out of her mouth felt like a knife in my brain”…and then she got very, very quiet, took a deep breath, leaned forward and yelled as loud as she could into my ear.

In any case, at a certain point, my partner – who grew up oldest of eight and is, I assure you, unflappable – got the name of a therapist who specializes in children who were adopted and have associated concerns.

In Vermont, heck, in standard liberal parentland everywhere, we like to Respect our children, right? We talk to them about things, reason with them, offer them Choices. In previous generations, this might have been viewed as permissive or, um, irrational, but we are Modern Parents, Enlightened Parents and we know that our children are Human Beings.

I had noticed pretty early on that Z seemed to really like choices. She would think about them and weigh them and often contribute her own additional option. In fact, she liked choices so much that her choosing had become an exhausting element of my life.

For example, if I suggested that Z go upstairs and get ready for bed (pajamas, brush teeth, toilet), she would typically ask, “Can I pee downstairs?” Well, sure…why not? "Can I choose a goodnight book first?" "...OK"

Or if I let her choose toys for the bath, she would choose an entire bathtub full (many of which I had previously told her couldn’t get wet), so we’d have to go through a long negotiation process.

Or –- and this was my stock story whilst commiserating with other mothers of daughters – if I would ask her to put her dishes in the sink, inevitably she would respond, “Can I put them Next To the sink?”

Everything was open to negotiation. Still, this felt progressive to me, especially as compared with other elements of our life together (many of which felt challenging and disconnective). So even though I sometimes wanted to say, “Just do it! Because I said so!” I didn’t.

Meanwhile, Z’s tantrums and certain other habits – hoarding food, stealing, sneaking, lying, general mayhem and human enslavement – continued to escalate. Z seemed profoundly angry and, quite frankly, did not seem to be developing a conscience. I knew that while she might pretend to toe the line when I was in the room, she would do whatever she wanted the instant she was unwatched. I didn’t care so much about most of the basic practical aspects of this, such as spoiled food or ripped clothing (well, the theft and destruction of jewelry was problematic), but I worried about the implications for her later life - and I did worry about safety.

The bottom line was I had NO idea what to do. I had tried all the suggestions of friends and family and none of it had worked. Some of the things she did were developmentally appropriate but many were not. Even the developmentally appropriate things were, when done by Z, on a larger, more Machiavellian scale. The whole Z package was just so over the top: brilliant, adorable, charming…and so, sooo incredibly poorly behaved.

Full Spectrum Mama was accustomed to G, the first child, who lived to do the right thing. G’s very loving, stable start in life, coupled with his innate literalness and natural sweetness, had produced a child who was liable to happily do what was asked of him, so long as he didn’t get distracted en route. Lest you think G is Mr. Perfect Child, I should add that he does indeed get distracted, oh, say half the time – and let’s not get into multi-step instructions.

It seems to me that toward the middle of a Full Spectrum of Doing the Right Thing (according to parents, anyway), children sometimes do what is right and sometimes do not, in either case sometimes because they want to and sometimes because they feel forced. I had one child who was glad to do what FSM asked, basically at all times, because he genuinely believed Mama had her finger on the pulse of cosmic rightness; and one child who didn’t give a rip about right and wrong and only ever did what she was told when directly observed. And often not even then. Her urge to do or get what she wanted felt to her, I suspected, like a matter of survival.

Consequences – another tenet of Modern Parenting – meant NOTHING to her. I would start with the threat of reasonable consequences and sometimes, in the avalanche toward the ridiculous, end up going to extremes. A dispute over whether Z had done something with 2/3 of my $54 jar of Clinique Redness Solution – a huge, wedding-based splurge – resulted in absolutely no admission of guilt from her and my having to enforce no dessert for a month. Because, as you know, Consistency and Follow Through are further tenets of Modern Parenting.

I cajoled. I punished. I warned her. I gave her her own creams. She was invariably back in the medicine cabinet within hours.

Extrapolate from the medicine cabinet to almost every other area of our lives -- I was lost.

During our very first therapy session, the therapist taught me the single most important thing I ever learned as the parent of an attachment-disordered child: [in this context] “therapeutic parenting is control freak parenting.” It turns out that the main thing my daughter needed from me was to help her feel safe. And by what felt to me like honoring her as an individual – giving her choices - I was actually showing her that I didn’t have the answer! Z needed me to tell her what to do. What a revelation!

Have I mentioned I am an extremely controlling person by nature? Knowing this, I have always gone out of my way to Not be a controlling person. It’s not about power for me (as it somewhat is for Z) it’s about my part of the spectrum, self-diagnosed long ago (pre-G!) at being juuust at the tip of the autism range. I am very literal, and there are right and wrong ways to do things. In the abstract, I do know that other people have their own ideas about right and wrong and, in principle, I honor that. But, given half a chance, I could definitely be a total control freak. Drop the constant negotiation and lengthy discussions about every move? “I can do that,” I assured myself.

How could I have known that by allowing my child to make her own choices I was sending her into a tailspin of uncertainty in which she would constantly and anxiously feel the need to exert the control that I was apparently incapable of managing? I began to give her clear direction – and she began to heal.

I explained to G that different children need different rules sometimes, and I think he understands. His particular spot on the spectrum sometimes calls for extraordinary monitoring as well. Figuring out just how to balance control and respect in these relationships is an ongoing project.

In the meantime, as for everybody else, you, too, may put the dish IN the sink, goldang it! Except glasses. Glasses and other breakables Next To the sink, please. And silverware in that cup with the soapy water? Thanks.

Love,
Full Spectrum Mama

Friday, January 27, 2012

Later, I am going to write a very serious poem. About death. But first a few words about the most alive people I know, Z and G, and about living and laughing with them and the most good crying jag ever.

Last spring, a bantam rooster from the stables next door came over to our yard. He was devastatingly handsome and conceited and all 6” of him vibrated with rooster power.

I called over to the stables to let them know he was at our house. “He’s on his own,” they told me, “He’s a jerk!”

I guess he was just too much man for those bantam hens…G and Z fell totally in love with him and G named him “Erk.” We fed him uncooked 10-grain hot cereal and delighted in him for a couple of days.

On the day that the kiddoes spend with their father, I went on a crazy mountain bike ride with my world-class athlete beau. Just a quarter-mile or so from my house, almost home, I hit a washboard and went over the front of my bike, knocking out both a tooth and myself. Fast-forward through the hospital, the initial grappling with concussion, the first sight of my ravaged face (Figure 1) to the next day, early afternoon.


Figure 1: My Face, May 2011


Picture me, a fairly slim, white, blonde woman. Without ever having been overtly aware of it, a woman imbued with major non-dangerousness (except during my punk rock days – and that’s another story!). I have decided to do some gardening, despite being somewhat physically and mentally depleted. I am still in my pajamas: skin tight red velvet bellbottoms and a concert shirt from my friend’s band. The design on the shirt is one of those ornate heavy metal jobs, with umlauts and gothic script and ram’s horns, but the band itself was a pop/folk band and the design is tongue-in-cheek. Anyway, I have a missing tooth, a black eye, and a cut down the center line of my face. I am carrying a shovel and a hunk of bee balm that I plan to plant just across the dirt road next to my mailbox. Oh, and Erk is by my side, my trusty sidekick awaiting the next sprinkle of grain.

Figure 2: Erk


Suddenly a giant SUV with New York plates comes barreling down the road, windows down. I step back into my driveway, shooing Erk along as well.

“Watch out for the roothter!” I shout to the couple in the SUV, who are looking at me with horror in their eyes. My definitely-compromised mind starts racing: why are they looking at me like that? No one has ever looked at me like that! I’m—well—me! What…the…heck…is…going on???

And then I get it. Or so I think: “Well, it’th not MY roothter!” I loudly inform the couple, as they drive away as quickly as possible under the circumstances.

I have had many a laugh with friends and family over the conversation that might have ensued in that SUV: “Darling, this is why we don’t LIVE in Vermont!”

BOTH children think this is the funniest story ever. They will inevitably ask me to tell it in any social gathering. But I remember this time more because it was the first time Z ever really cried. Not that non-attachment-promoting, angry, demanding cry of the attachment-disordered child, but pure sadness and compassion.

My parents had come up to help (I couldn’t drive) and brought the kids home from school later that same afternoon. I was sitting in the armchair and Z came toward me, slowly. Right there I knew something was going on – she usually zings when she moves. She climbed into my lap, took one look at me, and began to wail. She curled up in my arms and continued to cry for a very long time.

Four years after coming home, at five years old, my daughter was crying for the first time. I was very proud. It felt so good and natural to hold her and keep holding her. I told her how brave she was to feel her feelings, as I petted her and held her as if she really was my baby who really needed me in a way I could innately understand. Some part of me released that day, the scared and angry part of me that had shriveled when my daughter came into our family pissed and stayed that way despite my best efforts.

Sometimes we still reminisce about Erk. We’ll talk about how beautiful he was, how small, how dapper and self-important… I will usually say, “Wasn’t Erk the best rooster ever?” and G – literal to a fault - will say, “Mama! He was our Only rooster! “

Although Erk left our home a day or two later (having gone “back home” – if by “back home” one means “probably eaten by a fox”), he was our one and only rooster of enduring laughter and tears.

Love,
Full Spectrum Mama

Wednesday, January 11, 2012

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