IS DEVELOPING THIS SKILL: BALANCE(S) EDITION

Dear Persons,

The fall semester brings my favorite season and also, this year, an unexpected bout of teaching Intro Phil, which class only enrolled after registration closed so I was rather unprepared, the class that is by far the hardest class I teach because there’s no room whatsoever for winging it and I have to think “deep thoughts” and understand them, at least momentarily, so it takes a ton of prep, which is hard since I did not think I was teaching and took on other work, and even I don’t know where this sentence is going.

Frankly – and perhaps the above is indicative of this, hmm? -- my life generally feels out of balance, especially because of the difficulty of earning a living in a rural area while raising two high-needs kids. I’ve taken some steps to try to remedy this, but the biggest one was going to be firmly establishing a new, wildly lucrative line of work (Ramp up the editing? Finish book proposal and become publishing sensation? Teacher coaching???) this semester while I wasn’t teaching.

Oh well.

My Laotong (old same, best friend) recently shared some thoughts on balance. She said one of her wise teachers once told her that stable, even balance is a myth. That to really accomplish something you need to pour everything into that bucket, rather than trying to just dribble a little so your other bucket(s) stay(s) evenly filled. Except. If I pour any more energy into my career there just won’t be anything left for my family...and meanwhile my career is a hodgepodge that’s confusing even to me.

It’s also time for G’s three year evaluation. At times like this -- with multiple daily emails, calls, written correspondences, meetings... -- parenting my older child alone feels like another full-time job. Our last three-year eval was a Battle Royale about which I wrote in PROCESS, REPRESENT, TOOT, so grueling I am loathe to even recall it. But recall – and strategize - I must. His current school is proposing more testing, including adding testing for ADHD, which I thought was ruled out by/folded into his autism diagnosis years ago. Their explanation is that with more results they will be able to develop more tools for helping G succeed as he heads into high school next year.*

But I have to balance the school’s need for testing, documentation, and tools with how much G hates testing, how vulnerable he is to feeling singled-out, how much time this barrage of testing will take away from his much-needed academics. And we also must, at the same time, make sure their assessments reflect how G really behaves in real life contexts (he’s great at social skills in a two or three person small group environment, for example; outside of that, not so much; there’s a similar disparity for academics).

I need to try to get the right balance between the labels/tools/testing bucket and the acceptance bucket. And it’s hard to even know how to find that balance when I am facing piles like that in Figure I in addition to my work piles (not pictured).

Figure I -

The Behavior Rating Inventory of Executive Functioning

The Social and Atypical Behavior Questionnaire

The NICHQ Vanderbilt Assessment Scale

The Behavior Assessment System for Children, Second Edition

Figure II –

Closeup, Random

When you see such a plethora of tests you cannot help but think as to how this is your child's LIFE! The answers to these questions will be used to evaluate a human being, your beloved child.

You want them to be accepted and celebrated as they are, as well as situated in school so as to best Learn. You wonder how the oversimplifications of what feels like millions of multiple choice or scaled (always-often-sometimes-never, and so on, see Figure II) questions  can possibly reflect your child, and pray the testing will somehow be helpful.

You never, ever, ever want your child to read these generalized forms that aim to identify, problematize (so as to receive services), and label (ditto) and feel bad about him or herself, or judged, or reduced to a standardized series of questions and answers.

You have to go to the bathroom many times while filling them out.

Or maybe that’s just me?

Consider that while I try to find balance in testing and school in general for my son, the time this effort takes shifts the aforementioned balance I am trying to find in work...and the balance I am trying to find with my zooming into teen-land-three-years-early (she just turned 10!) daughter...

I need less in the bucket that holds stuff like me crying in the bathroom for an hour because I suddenly find out there’s a random, last-minute half-day and my schedule is so precariously micro-scheduled that this puts me over the edge. That’s a balance that’s too delicate!

When I look around me, I see that I am not alone in feeling unbalanced. Perhaps that’s because I now know – thankfully! – a lot of other families and people who fill a Full Spectrum of their own. But it’s not just them. As my fall 2015 Intro Phil students say, this system is hard.  It’s impossible for most of us to do as Aristotle advised and become a “happy philosopher,” spending your time reasoning and pondering...

But we get up every day and go after that elusive balance, don’t we? Perhaps that’s what balance is in the real world? 

Love,

Full Spectrum Mama

*What?

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 World. I 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.

THE HARD TIMES ALTERNATOR

From time to time, Full Spectrum Mama feels inclined to posit the existence of heretofore undiscovered mechanisms of being, such as the Extrapolator-Catastrophizer Gland (a.k.a. the ECG -- http://fullspectrummama.blogspot.com/2013/05/the-incident-of-overactive-extrapolator.html).

I’ve noticed over the years that, when one child is seriously – really seriously -- full of beans, the other will often back off from any of their usual “issyews” because, well, I used to think it was they could tell that MAMA CAN’T TAKE IT ANYMORE and if ONE. MORE.THING. HAPPENS…She’s gonna BLOW.

However. I’ve recently come to believe in the existence of a previously unknown ethereal apparatus that I am going to dub The Hard Times Alternator (THTA). This nifty device, when in good working order, is what makes one child stand in slack-jawed awe of another child’s tantrum, rather than joining in or – egads – cooking up their own simultaneous insidious activity. (Please see Figure I, below.) Then, it’s what makes Ms. or Mr. Slack-Jawed bust out a classic drive-u-nutz move once their Loco sibling has subsided. This is known as "The THTA Switcheroo." And then you eat the candy. A lot of candy.

                                     Figure I – Hypothetical Examples of THTA Activity

THTA is what makes you get several new part time jobs when you lose the one you had; or get a really great magazine in the mail right when you get sick. It drops the good thing in on either side of the less-good thing. So that you can live?

THTA is Not to be confused with the classic “We only get [or ‘God only gives us’] what we can handle.” Which – just – no.*

Indeed, ideally, THTA should be a fair manifestation of macro-order justice and balance, proportionately bringing ease where needed and modulating struggle.

Do you feel slammed? Maybe your Hard Times Alternator is jammed. Unjam that slam with some [insert clever, applicable rhyme here].

Love,

Full Spectrum Mama

* This insipid and presumptuous saying is a perennial favorite COMPLAINT of THE COMPLAINT DEPARTMENT.

Poorly Behaved: A Context Spectrum

“Z, please come downstairs,” I called from the kitchen.

Since I was cooking dinner and not really paying attention, it took a few minutes to realize my daughter hadn’t shown up. Sharing in kitchen chores is something Z really enjoys, an opportunity for us to have plain old fun together, so I tried again.

“Z,” I repeated, perhaps the tiniest smidge more emphatically, “Please come downstairs.”

She came to stand near me as I bustled about.

“Sorry Mama,” she informed me, “I didn’t hear you the first time.”

Hmm.

“Well, if you didn’t hear me, “ I sputtered, “How would you have known I called you the first time, then?”

Blank look.

“Oh, never mind!”

“Normal?” Perhaps. (Although not in the autism area of our Full Spectrum.) In the context of the rest of that day’s events, this exchange emerges as one of many instances of survival-motivated behaviors that add up to an overall tendency toward evasiveness and, therefore, at least in our case, dishonesty.

How does one raise a child inclined to subterfuge? On even the most minor points, Z tends toward confabulation. That is, her disorder (for confabulation implies an illness, often dementia) inclines her toward making up whatever answer is most suitable to her needs. 

We have made some real progress with tantrums since the early days (see, for example, http://fullspectrummama.blogspot.com/2012/06/needhelp.html) but the more subtle matters of day-to-day integrity are an ongoing trial.

I was recently talking with my mother about why I haven’t really explored the online world of attachment disorders in the same way that I have those of autism and aspergers syndrome. I told her I thought it was because most autism sites seem to celebrate people’s differences while I feared attachment disorder sites would just make me scared or sad. I knew that they might make me feel less alone in our struggles, but I suspected hearing about other people being as hopeless and desperate as I have sometimes been would be depressing.

When I googled “attachment disorders,” the first site I ended up on was:

http://adoption.families.com/blog/a-letter-to-our-new-neighbors-about-our-rad-daughter.

I had landed on a link to a letter on a parenting site, from a mother of a child with an attachment disorder to her new neighbors. Her daughter was quickly forming intense friendships with people in her new neighborhood and this Mama was concerned about the healthy development of those relationships.

I know how she felt having to write that letter. When you have a child with an attachment disorder, sometimes you feel like you need to write similar letters, over and over, even to some of the closest people around you.

A Context Spectrum comes to mind: yes, I understand that sometimes {insert behavior} is “normal” (and, hey, maybe you are trying to make us feel better – thanks!) but in a context of {behavior}, {behavior}, and {behavior}, it is NOT normal. And to ignore it will NOT help, in fact it will almost certainly make things worse.  So please, dear {recipient of letter}, understand that we need to handle this in a way that might seem overly strict to you, but, beloved {recipient of letter}, trust me that you do Not know best in this context.

This letter-writing Mama’s daughter is, like Z, incredibly charming and engaging, and her mother is worried – for good reason – that her daughter’s interactions with neighbors may spiral out of balance in any number of ways.

Her letter most definitely touched a nerve.

I didn’t go to any other attachment disorder sites that day.

I had a vague idea about attachment disorders but assumed since I brought Z home under the age of one she would be unaffected by this illness.

The fact that I was unable to put Z down for a year or so (according to those with intact memories of this period [not including me]) without causing an unremitting stream of bloodcurdling screams to emit from her tiny mouth might have indicated that something unusual was going on. I attributed her neediness to her exceptional intelligence and sensitivity, as well as to her temperament, about which our guides in China had warned us. I can still remember “Rose,” standing at the front of our bus with a microphone, announcing with a big grin, “Since they are from Jiangxi Province, your daughters are gonna be Spicy!”

The contrast between the plump, smiling, radiant six-month old baby in the referral picture I received and the scrawny, closed-faced child of nine months and three weeks that I met was stark. What happened in those three months? Was it something specific, like hunger or abuse? Or was it just that my incredibly perceptive girl had noticed that something was missing? 

I thought that once I brought her home and fattened her up a bit that jolly baby Z would re-emerge unscathed. It hasn’t been that simple. Loving my vibrant, wonderful yet troubled daughter has not been enough to heal her – yet; and we have searched at length for therapeutic modes of discipline that will actually work.

When I first brought home my “first and best-behaved child,” Pancha, who happened to be a dog (Figure I), I resolved to never say “bad dog!” “Bad dog” just sounded so mean. Love the sinner, hate the sin! I decided, instead, to call her “poorly behaved” if she did something “bad.”

       Figure I -- The beautiful Pancha,* a.k.a. Sri Sri Sri Panchananda-ji, Gabooboogee, The Punk

Pancha joined my household when I was in the early years of graduate school and was living on a fellowship that only barely paid the bills. Every once in awhile – as in, every year or so -- I would buy something new to wear; slightly more often I’d indulge in second-hand clothes from the 96^th Street Salvation Army.

When Pancha was still a puppy, I purchased a precious, precious new pair of shoes. She promptly chewed them to pieces. I was devastated and determined to prevent such an event ever recurring. I put her on her back to show her who was boss and scolded her with a mighty wrath. She trembled, cowering and groveling in guilt and remorse. Except – as she cowered and groveled in guilt and remorse, she reached out with one paw and – dink, dink – played with a toy.

My daughter reminds me a lot of Pancha: brilliant, beautiful, vivacious, punk, very lovable, very hungry – and with a bifurcated mind. One part focused on pleasing Mama, the other (larger) on getting what she wants…Conscience? “Is still acquiring this skill,” as they say on Vermont report cards. My beautiful dog and my beautiful daughter: both quite good at aping respect; underneath that surface layer, both convinced that they should take control. It was cute in a small dog, in a small person it is sometimes disturbing.

Z doesn’t even do the fake remorse, groveling or cowering. If Z is found out in a lie or poorly behaved activity she is, not to put too fine a point on it, pissed. She has to be reminded, often firmly obliged, to say she is sorry.  The jury is still out on whether forced apology works on any non-superficial level or is an acceptable parenting tool, beyond the most simple and public of social situations (i.e., “Please apologize to that other child for cutting in line”). 

A wise aunt once told me, “Be careful that you don’t scold your child in a way that makes her begin to have a picture of herself as ‘the bad one.” I’ve tried to combine that with the notion of “poorly behaved” to manage Z’s disordered actions as actions per se -- and not character flaws. As I mentioned, we’ve made major progress with tantrums. We are down from multiples every day to an average of one or two real humdingers a week!

But Z’s general approach to life seems still to be one of pragmatic get-what-I-want-with-a-minimum-of-obstacles-ism. Despite my never using this word with her, when I ask Z why she did a given “bad” thing she will answer me with a shrug, “Because I am bad.”

                              Figure II -- Self Portrait by Z, casually left on the drawing table

During a Harry Potter camp last summer, the kids brought home stuffed owls and kept them in their windows. A mysterious “someone” would send notes every night (for a very long time, every night, until, indeed, the owls got very “tired” and “retired” to chairs and beds!). Over and over again Z received notes that affirmed her essential, innate goodness, in words she could understand: “Let your good heart shine,” “ You are so kind inside – don’t be afraid to let your kindness out!” and so on.

    

        Figure III – Drawing under the drawing in Figure II: slightly comforting in the drawing 

                           context spectrum, assuming she is the one with the wings...

Around this fall equinox I had a talk with G and Z about what the equinox represents -- the equal day and night hours, the meaning of equanimity, finding balance…

I shared that I felt like my teaching work had taken over all my writing and yoga practice time (please see http://whitewhine.com/) and that I felt out of balance for that reason. I asked them if there was anything in their lives that needed to be in better balance.

G replied that he felt that his life was in a good balance.

Then Z announced, “I‘m too bad. I’m going to stop being bad, just like I stopped biting my nails.”  (Her quitting a serious nail-biting habit is an example I always use for her to remind her of her strong will power.)

“Oh, Z, you are not bad,” I reassured her, “Sometimes you may do a thing that seems bad but that’s just because you are hurting inside.”

This is, after all, how I explain unkindness, cruelty, lashing out and general chumpitude to myself and to my son, on his spot on the Full Spectrum. I prefer this explanation to one of selfishness, and in Z’s case I believe it holds true.  It is my failure as her Mama that all my linguistic somersaults have not prevented my daughter from thinking she is “bad.”

Nor have my modes of discipline made much progress: Did Z stop being poorly behaved? Not quite yet.

Is not the fact that we both get to keep trying not one of the neatest things about life?

Love,

The sometimes poorly behaved but never bad,

Full Spectrum Mama

* Some haters may quibble with the word “beautiful” being used to describe my stunningly lovely dog. I have nothing to say to them.

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Teaching My Son to Ride a Bike

We recently had pizza night with Noodle, her partner and her partner’s children.  The four children are a rare good match: two powerful gals who are willing to share their power for the sake of fun and two gawky boys with no (G) or low (friend) eye-rolling urges. (G’s friend is a lot younger, but G doesn’t give a hoot about age.)

After a brief – but non-cruel – period of incredulity over G’s inability ride a bike, G’s friend – wisely, I thought -- offered him his scooter. Friend rode his bike up and down the street while G attempted to scoot alongside. After trying the bike, very briefly (and, one might say, fruitlessly), G wondered if we might get a “bike like this one” instead of the larger one we have been using to try to teach him how to ride for the last several years. I had that quick sinking feeling of worrying about the cost of a new bike, but answered immediately that we would do so.

The very next day, we were driving along a country road and saw the perfect bike with a “free” sign propped up against it.  We popped that bike in the car faster than you can say “Our motor-challenged boy with aspergers is willing to try to learn to ride a bike and, goldang it, we are going to Do This!”

Pardner pumped up the tires and we were ready to start.

I have been trying to teach G to ride a bike since he was really little for so many social and physiological reasons. Bilateral movement, increased proprioception (a fancy word for self-awareness in space), basic balance-improvement, focus, self-esteem, not getting crap from other kids, and general fitness are just some of the likely benefits. I have been dismally unsuccessful.

When G gets on a bike, he gets distracted. He looks down, losing himself in the turning gears, or the patterns on the road. He leans all his weight on me, making no apparent effort to balance. He is incapable of steering and pedaling at the same time. He forgets to leave his feet on the pedals if I tell him to try his brake. In fact, there are way too many factors to take in when on a bike and – At The Same Time! -- on a street. For many years it seemed like he would never be able to ride a bike. I understand: in an earlier post, I mentioned that I didn’t really learn to drive until my late thirties, largely for similar reasons. Sensory overload and safe, direction-oriented navigation don’t necessarily go together.

Our first try on the new bike: G displayed all of the above while Mama tried to instruct. Not long after starting the lesson, Mama began to lose it. “Keep your eyes on the road. Please keep your eyes on the road. KEEP YOUR EYES ON THE ROAD!” Also, “Feet on the pedals. Please keep your feet on the pedals. FEET ON THE PEDALS!” You get the drift.

“I think this is a good time to stop,” G kept suggesting; but noooooo: Mama pushed on until it became obvious that we were getting nowhere fast.

We veered gracelessly into the driveway. G’s little face was all crumpled up. I asked him why he looked so upset. “You were yelling at me every time I made a mistake!” he wailed, and then began to sob.

My stomach clenched. I tried to explain that I was raising my voice because he wasn’t listening and that I was sorry he felt hurt. And -  “Yes,” I had to finally admit,  “I was frustrated.” It’s just a bike. And yet it isn’t.

All the things that will be harder for him than they are for other people, all the extraordinary safety concerns one has for someone with zero common sense and oft-scattered attention, common and less-common fears...all are triggered in this bicycle-riding cycle.  Plus, there was me sticking my feet under his tires periodically, which was kind of annoying to both of us.

There we stood, both holding on to the offending object, a rusty, dirty, old black bike that still smelled for some reason like manure despite a good rinse. Both shaken.

Z, nimble and chock full of sense, watched us warily. She had been riding behind us on her bike, balancing alternately on each side of her broken training wheels just for the heck of it.  If there is a bike riding spectrum, once again we see a Wide Range in this family. She seemed confused by these clumsy, sappy people.

The good thing was, though, that after a recovery period he got back on that bike. And we are still trying.  It doesn’t seem like a “never” now, it seems like a “someday,” even if that someday is far away. Not only that, I dare say we have begun to have fun in the process!

Plenty of people don’t ride bikes. No biggie. But I very simply and not-so-simply want G to be able to ride a bike if he so chooses.

I would, quite frankly, prefer that he not ride a bike unless absolutely necessary (and only with me around) – much as Pardner feels about me and driving – but I want him to have the option.

Figure I – Rocket Boy

The text on this painting reads, “There was a person who could not walk to school so he invented a rocket and flyed to school.”

G knows that he is different – neurologically, physically – from the kids in his class and beyond. This painting gives me hope that he knows that for all the things he does differently or cannot do, there are things that he can do that are more magical and more wonderful than the ordinary. Even if G never does learn to ride, I know he will find ways to make his journey.

Righteous Love,

Full Spectrum Mama