BEING 12

 I was talking with a very close friend about a crisis* G had in school last week and, after I’d been blabbing for some time, she said, “Well, you’re so focused on his autism what with the blog and everything, and, you know, all kids have struggles…”

Oh dear…Is that what people think, that for us it’s all blog and/or autism? To clarify, I have three jobs now. So it’s a privilege to think about this darling blog for even a fraction of a moment. Second, this conversation had nothing to do with the blog [until now, anyway] or G’s having asperger’s. Did I mention autism during my diarrhea of the mouth**? No. This – all this I had been sharing with her about what happened at school, which incident was very painful -- was

about

being

12.

This was, maybe, partly, also, being a child of a tough divorce. But autism? Not so much. The main crisis-inducer here was, again: being 12.  Luckily, we are good enough friends that we were able to clarify our respective perspectives well and move on, but it sure got me thinking…

Is 12 the hardest age? My vote is yes.  You are still so young, but bravely trying to be “grown-up.” You are sullen, self-loathing, monosyllabic; while also still wanting and needing to be taken care of and adored. You are still extremely cute and squeezable, yet you are, at times, a jerk. Other times, you are sweet as sunshine. Then: jerk! Sunshine. Sunshine. Jerk.

It’s SO moody at 12.

Your peers are starting to have serious interest in whoever they might be interested in romantically; and, although you might not be quite there yet, you feel it stirring. And it’s confusing.  Watching G sometimes, one can almost see the new feelings and hormones moving inside him, moving him, like the sap running in trees this time of year.

At 12, most kids won’t admit to still liking to play…and yet they do still like to play, in private or at home with younger siblings.

Sure, maybe for G, he’s a bit developmentally behind his peers, but being 12 is something that happens to most people at some point, whether they are 11 or 13 or…

Being 12 is, for G, about knowing soon you will have to put away your stuffies.

Figure I – G has a LOT of stuffies. His treasured seals [one is a manatee, oops!] are in front.***

Being 12, for G, also means still being enough of a little one to offer your best stuffies to your mom when she is sick.

      Figure II – Healing Stuffies, Blanco and Blancli, on Mama’s Pillow****

Being both of these is tender, and raw, and HUGE.

Sometimes things in the Full Spectrum household are pretty near idyllic, and sometimes they are decidedly not. Sometimes that non-idyllic situation has to do with autism or an attachment disorder or something else entirely…Sometimes, for pure awfulness as well as the occasional marvel, being 12 is enough.

Love,

Full Spectrum Mama

* Yes, I do use this word advisedly.

** I know I promised less diarrhea-focused writing; this is diarrhea of the mouth.

*** Please, those of you for whom this blog is not anonymous, DO NOT SHOW THESE PHOTOS TO YOUR 12 YEAR OLDS!

**** None of these stuffies will be gotten rid of. It’s possible they will “belong” to G’s younger sister in future, or move to FSM’s bed (shh, pardner doesn’t know about this), or be given to deserving, saintly little ones in great need.

A MEETING FRIEND

If you haven’t already got one, I suggest you find yourself a Meeting Friend. What I mean by this is we all need someone who is in a similar situation. You know, the other person who, like you, secretly wants to do the merengue at the water cooler at your conservative office, or the one who also thinks about global warming All The Time, or has to bring their own snacks to school because if they eat vending machine snacks they will be sick all over the common room. The other single parent. The one at the boozefest who’s also in AA.

Whatever your difference, it usually feels better when shared.  Who wants to feel “special?” Or be a martyr? Better to not be alone in differences and/or challenges, no?

For me, finding someone who, like me, was dealing with a surfeit of school meetings (both historically and currently) was a game changer. It made me, as the mother of a Full Spectrum of children, feel like I shared a challenging aspect of life with another human being. It gave me a chance to connect over meeting topics and strategies, rather than having to accept empathy/sympathy from someone who had no idea what I was dealing with or, more likely, choosing to simply keep my mouth shut.

Depending on your location this might not be easy – it took me eleven years - but it’s something worth seeking out if you haven’t already found that person or persons.

And so, without further ado, I present to you:

Ode to a Meeting Friend

For D

If you’re rushing and fleeting to get to a meeting

And you see a sad person who’s sad in their greeting

And you ask them what’s up and they say through a tissue

That the teacher or principal called with some issue

Ask, How many weeks in did it happen to you?

Wait…You’re on your way NOW to a dread meeting TOO??

It is then you will know he or she is The One

The person who’s having the same Special Fun

Say: I take it You got “the school call” today too?

I know how you feel and I know what to do!

Between two there are so many ways to face meetings!

Some sob fests …co-ranting…emotional eatings!

Between two the whole scene becomes funnier, normal…

You can bawl, laugh or BOTH now, without being formal.

So let’s sing the praises of the Meeting Friend

Who is there with the gluten-free agave cookies

Who is there cuz of knowing this stuff ain’t for rookies!

Without him or her your heart might not quite mend

I love you, I love you, my dear Meeting Friend.

Love,

Full Spectrum Mama

Dear Readers,

I am sorry to inform you that Full Spectrum Mama is taking a little “vacation.”

It seems that when she picked up her children from school yesterday -- having spent the day in a panic attack on the toilet – and both children declared the first day of school “TOTALLY AWESOME,” FSM had a small nervous breakdown and had to be carted away in the Mombulance* to a “’Special’ Place” in order to have a surgical ECG** reduction. 

I am sure she will be in very good company with all the other First-Day Extrapolator-Catastrophizers, along with your general Extrapolator-Catastrophizer population.

Sincerely,

Partial/incomplete Monochrome Persona (PiMP), Guest Writer/Troubleshooter

* ECG: Extrapolator-Catastrophizer Gland: http://fullspectrummama.blogspot.com/2013/05/the-incident-of-overactive-extrapolator.html

** Mombulance: http://fullspectrummama.blogspot.com/2012/04/tools.html

Summer, Summer, Summer Time

Having, now, about two hours of the school year left and counting, I went tooling around the internet and found this post: http://lostandtired.com/2013/06/19/insane-in-the-membrane/ , and got “Insane in the Membrane” (a life-mantra, if you will, for the Full Spectrum Family and Friends) stuck in my head for the gazillionth time and, so here, Daddy lostandtired, …Gotcha back? Hope so.

 

Summer, Summer, Summer Tiiime…Time to Sit Back and Unwind

Remember this Jazzy Jeff and the Fresh Prince song?

I’ve been humming it incessantly. Because that’s what we are going to do this summer?

Yup, I am determined to show my guys the FUNNEST, most wholesome, refreshing, unwindingest summer EVER.

And so I am sure there won’t be a THING to write about.

Plus, it seems I will be busily frolicking with Z and G  24/7  all summer, except for two weeks of camp, during which I will be, naturally, sailing the Mediterranean and getting my spa on. *

Indeed, we’ll be sleeping late,* eating a wide range of ONLY healthy foods while having no stomach issues,* and taking luxurious* road trips with the whole family enjoying brain- and character-building activities,* bicker-free, of course.*

I’ll certainly be musing about ongoing topics from past concerns such as:

how “disability” can be a super useful term (a.k.a. “I’ll call you whatever you want, whenever you want,” hmm…maybe that’s the post right there?);

diarrhea (Do we still have it? Bet you’re on the edge of your seat!);

Shifting Gears parts II, III and onward;

whether bringing up the existence of Finding Fairies (http://fullspectrummama.blogspot.com/2013/05/the-finding-fairies.html) might actually have been Z’s way to give me back my necklace (i.e. whether the whole scenario was not in fact actually my brilliant idea…);

and, relatedly, about who, actually, is in charge around here anyway?

Merry summer to you, dear readers,

Love,

Full Spectrum Mama

* In my dreams.

Clarification Interlude

This morning I ran into a colleague while having an oil change. I told her I was “pretty excited” about something, I don’t even remember what, because I was just chewing the fat, mmmkay?

“Well, obviously you’re a pretty hyped up person,” she informed me.

And here all these maniacally stressful years I’d thought my hard-won (let’s not call it fake, hey?) positive attitude was coming across as, I dunno, mellow cheer.

Also, my Very Strict Writing Group Overlords have cautioned me that lately Full Spectrum Mama has been sounding a bit “breathless” and overly full of “We Can Do This” attitude, leading to an overall impression that I “have things figured out” and am a “Good Sport.”  Knowing me as they do, they dared to question this state of affairs.

I had a chance to ponder their impressions the evening after our last meeting, as my car overheated on the highway and the Full Spectrum Family’s 3 hour trip turned into 6-plus hours with a special bonus of three roadside diarrhea incidents and one potential car-repair-bill-induced panic attack.

The only Good Sporty part of that whole story was when we finally got to the convenience store and I let the kids pick ANY donut, even though it was well past Dinner Time.

I’m horrified by the possibility of a random reader falling upon this blog and feeling alienated and, possibly, inferior because I come across as a Pollyanna of competence, wisdom and equanimity. Because, do I really have things figured out? No.

So I’d like to clarify.

The following pie chart roughly illustrates a more realistic model of Full Spectrum coping techniques:

Love,

Full Spectrum Mama

First Anniversary Lists III: Choosing your Battles

One initially formative idea for Full Spectrum Mama was that if something worked in our household it might be useful across a wide range of circumstances (consistent boundaries come to mind). Or, at least, our mistakes might prove instructive (diarrhea [still working on that one]).

But surety in these complicated times has never been a strong suit of our household. Readers have been more likely to laugh or cry with us than to follow my commands.

The first thing that comes to mind when I think “parenting solutions” is, um, drinking…For those who are not struggling with substance abuse issues, may I suggest a moderate portion of your preferred mood altering substance? FSM never cottoned overmuch to vino until single motherhood hit. Now, if she can remember, a glass of wine or beer definitely eases dinner and bedtime transitions [note to self: make note to remind self to drink wine].

And then there is the “solution” – much needed in a Full household - of picking which issues and behaviors to address and which to drop. In the matter of choosing battles, the grandmama of all battle-choosing advice comes to mind. Sure, it’s a cliché. On account of because it’s super wise:

The Serenity Prayer 

God, grant me the serenity to accept the things I cannot change,

The courage to change the things I can,

And the wisdom to know the difference.

Or, for those who are not religious or do not feel that serenity comes from “God,” here is a version from The Serene Atheist (http://sereneatheist.blogspot.com/2009/10/secular-serenity-prayer.html):

Through my efforts, I gain the serenity to accept the things I cannot change; 

courage to change the things I can; 

and the wisdom to know the difference.

 

Years ago, during an unrelated family mental health scenario, I learned that some traits are known as ‘characterological.” This term refers to aspects of personality and behavior that are neither strictly psychological nor neurological; instead, they are character traits – good and bad – that can be remarkably hard to change. Such traits are not reflections of mental illness or neurodiversity per se but have to do with the will and desires and tendencies of any individual. Thus, one might be characterologically prone to greed or generosity, kindness or cruelty; one might be shy or bursting with flair, honest, sneaky, sunny- or surly-natured…

Character can be worked with, its better aspects supported and its lesser elements healed and diminished; but it cannot really be eradicated.

It’s useful to try to get a handle on what’s what in this area, and to know which behaviors are

unhealthy, pathological or reflections of disorder

or

functions of disability or developmentally appropriate

and which are

basic, natural self-expression.

This can bring some insight as to whether or not – and possibly how – behaviors can be ameliorated.

It’s also imperative to know as much as possible about your unique circumstances so that you don’t lament OR excuse inappropriate things, or confuse character with a difference, disorder or disability.

For example, it’s hard to say how much of G’s generosity comes from his character and how much from his Aspergian non-attachment to most material goods. Part of my job is to help him develop enough common sense to distinguish between generous and reckless giving. Z’s giant hambone consists of one part attachment disorder and one part inborn characterological star quality. She needs to learn how to balance and channel that energy, but she will always be a VIP.

Figure I – A FULL Spectrum: from (foreground) Z’s jumping into front of the camera-field “Hi, Look at ME: I am fabulous! All The Time!!! Hey! Did you look away? Hi!” to (background) G’s looking-away expression of “Stripes. Stripes. Striiiiiiipes.” Not to stereotype, but this is…typical. (At the Sol Lewitt exhibit at Mass MOCA.)

The camera lens has captured Z in full form, oozing pizzazz. I cannot imagine telling her to back off or tone it down.

G’s absorption in art here seems part poetic, part flakey, part characterological, part Aspie. What should I do to get him to look at the camera for once, shout at him? I could say, “Pay attention!”

Nah.

Everybody’s got their stuff, right? Whether you (or your child or someone else) are attachment disordered, on the autism spectrum, wonderful in 99 out of 100 categories, mentally ill, spoiled, temporarily or permanently sweet or grumpy or cranky…having a solid perspective on what can (can’t) be changed and what should (shouldn’t) be addressed and healed can be immeasurably valuable in the day-to-day. Knowing what’s what – insofar as that is possible - can help you choose your battles!

Choosing Your Battles List

1.     Safety issues are non-negotiable.

2.     Public humiliation issues are at the discretion of the individuals involved. Only YOU can gauge the unbearable, loathsome edge of your acceptable-humiliation zone.

3.     Is X expressing his/her character or his/her pain/disability/disorder?

4.     Is Y able to change his behavior him or herself or does s/he need help from you?

5.     Are you able at this time to offer that help???

And…

6.     The Ultimate Battle Choosing Question: Can my child (or I, or those involved) learn, benefit, grow or heal from this situation, or should I just let go/accept it?

I have turned this information into a Flow Chart:

                                            Figure I – Choosing Your Battles Flow Chart

This handy, dandy flow chart may help channel typical concerns into decision-making success. As a bonus, options for simple suggestion as well as actual intervention are included in each branch. Whenever I am mired in a real-life situation I always make time to refer to a list or flow-chart, which I naturally have at the ready.*

Next Week: my final anniversary list: "The Complaint Department."

Love,

Full Spectrum Mama

*…in my dreams.

Diet II – A Poem

We were driving home from Grandmother and Grandfather’s house in one of those monsoon-like storms that seem to be getting less uncommon when G informed me that he had to go, “really this time.” Through the downpour, I could barely make out that the next exit claimed to have a gas station; even the exit itself was barely discernable. Somehow we found our way to the first – closed – gas station then turned around to try to find the alleged gas station in the other direction. When we couldn’t find that one, we pulled into a likely-looking lot, surrounded by promising woods and a bit secluded. A police car pulled in after us. I explained to G that getting out of the car in the pouring rain and heading for the woods wouldn’t be appropriate at that particular moment. As I drove my courageous, whimpering son back onto the highway at a snail’s pace, the following poem popped into my head, almost in its entirety:

Villanelle -- Mad Diarrhea

(with apologies to Plath*)

I ate some food, therefore my insides churned

I bade my time, held what I held too long

(I thought that I could fart – but I was wrong)

The probiotics go sliding in with happy song

And also I ingested some sweets, and that was wrong

I ate some food, therefore my insides churned

I dreamed I ate some gluten and then cheeses round

And in the roadside woods “released” both upon the ground

(I thought that I could fart – but I was wrong)

Fermented food topples from my fridge, fibers abound

Exit possible allergens and yet…not diarrhea

I ate some food, therefore my insides churned

I fancied certain diets for our health and to live long

But I grow hungry and I want some bread

(I thought that I could fart – but I was wrong)

I should have stopped at the gas station instead

At least when you go there they’ve got tp

I ate some food, therefore my insides churned

(I thought that I could fart – but I was wrong)

Alllllrighty then…I promise, no diarrhea posts for at least a month.

Love,

Full Spectrum Mama

* This was one of my favorite poems back in the day:

Villanelle - Mad Girl's Love Song

            By Sylvia Plath

I shut my eyes and all the world drops dead;

I lift my lids and all is born again.

(I think I made you up inside my head.)

The stars go waltzing out in blue and red,

And arbitrary blackness gallops in:

I shut my eyes and all the world drops dead.

I dreamed that you bewitched me into bed

And sung me moon-struck, kissed me quite insane.

(I think I made you up inside my head.)

God topples from the sky, hell's fires fade:

Exit seraphim and Satan's men:

I shut my eyes and all the world drops dead.

I fancied you'd return the way you said,

But I grow old and I forget your name.

(I think I made you up inside my head.)

I should have loved a thunderbird instead;

At least when spring comes they roar back again.

I shut my eyes and all the world drops dead.

(I think I made you up inside my head.)

A Petite Follow-Up Spectrum

Ah, summer: that special time when school is out and those of us who are primary caregivers to young children and who either cannot afford to send them to camp all summer or choose not to (or both) find ourselves faced with long days full of endless possibilities of a nonetheless limited sort. The luxury of choosing to be at home with the children during the summer is not one I have during the school year, and its result for now is a piquant combination of gratitude and exhaustion.

The other morning, Pardner was about to leave the house for a fourteen-hour day that would start at the farmers’ market and end with restaurant cleanup. He asked me what my plans for the day were.

I pictured the day ahead of us – a minefield of possible tantrums and stomach upsets for starters, the dull hours of the “I have nothing to do” chorus, the sweet and cherished snuggles, unexpected giggles and opportunities (responsibilities) to create memories of a carefree, wonderful childhood.

“Well, we’ll probably head to the farmers’ market later and we do have some parties to go to...” I ventured.

“Must be nice,” he chuckled.

“Well, if you must know, I might like to do some writing for my much-neglected blog or tackle my course prep or practice yoga or take a nice long run or even sit in the hammock and read a book while eating bonbons today but those things are not among my options,” I retorted, somewhat defensively…

At said farmers’ market I ran into a girlfriend who was there with her “surprise” child – conceived while she was on birth control in her early forties and her two daughters were in their early tweens and her life had begun to free up. I told her about the above exchange and she laughed heartily, resignedly, only slightly bitterly…

Some school-less days, we spend the whole day looking forward to that treasured half hour after the kids are in bed, that bit of time we have to ourselves before we pass out. In summertime, official bedtimes stretch out -- for us, 7 and 8pm become 9 and 10 and later.

And then sometimes, as soon as they are in bed, we miss them! Right?

That said, here’s what I currently am able to offer, given my summery circumstances: a petite follow-up spectrum to selected past posts:


“Tommy” (from “Would you rather…I”)
I found out that I was right: Tommy’s elderly mother did pass away and he did have to move. However, he didn’t have to go too far: he was taken in by his Aunt, who lives closer to the center of our small town. He has brothers who are very devoted to him in the neighborhood to boot! He now strolls happily with his walking stick around the town square, which has been called one of the most lovely in New England.

Figure I: The Empty House up the street, which was Tommy’s home. It is no longer quite so sad to see.

Tripping/Boundaries (Toilets)/Diet/Diarrhea

We have been gluten and casein free for over a month.



Those of us with weak stomachs still have ‘em – G’s is about the same and mine is noticeably worse. Migraines? Worse. Red mask-like skin? Worse. Reflux?  Worse.

Compensatory eating has also become a factor, insofar as we resent not eating certain foods and those substitute items we do eat are generally awful (so naturally we need to eat more of them).


I understand, though, that this process can take at least three months, so we are sticking with it for now. As for the fake-gluten and fake-dairy items- avast ye terrible products (with a few notable exceptions, such as GLOW cookies). I wager it’s time to focus entirely on whole foods, not wheat/dairy replacements.  I also wager we ultimately will end up moving toward a diet much lower in wheat and dairy, much as we did with soy after Mothering magazine published a damning article about soy in 2004 (and we realized we were eating 6-8 servings a day of soy!).*

It being summer, we have ventured a few perhaps ill-advised jaunts to visit the ocean and family. Restaurants are pretty much out of the question since the only vegetarian item ever available for kids seems to be macaroni and cheese. Mac and cheese seems to hold great desirability and nostalgia for G in particular: “Remember when we used to eat maccy?” he recently asked with a tear, subsequently admitting that our “adventure” with this GFCF diet has been “really, really hard.” I wondered aloud if Z felt the same, and was met with a sheepish, sad nod. That kind of suffering seems hard to justify without any surety around whether a GFCF diet is a solution for us; still, we will go the three-plus months needed for a clear indication.

I used to feel sorry for servers who have to deal with “picky” people at their tables. Now my feelings are more mixed, knowing, as I do, how hard it is for families with possible intolerances who are trying to have a rare treat: a nice, non-depressing meal out with their kids.

If, for instance, after close perusal we find that the only vegetarian, gluten free, casein free item on a menu is a frittata with potato crust and then are told, “Oh no, we don’t have that today, we only have the bacon-cheddar quiche,” are we, Full spectrum Mama, justified in going into a fugue state?

Also, we are coping with G’s anxiety around driving anywhere further away than 20 minutes. I don’t want car travel to become a phobia for him, so we have a policy now of stopping as often as he even suspects he might need to go. Two hour trips can turn quickly to four, but then again he only needed to stop twice en route to Cleveland (ten hours). Go figure. I cannot decipher if there is any correlation with any particular types of the limited foods we are still eating.

The other day I was reading The Autism Revolution (not entirely uncritically) during my lunch and I found out that several factors in G’s life -- including birth by C-section, being gestated by a mother with an autoimmune disorder and antibiotic use during the first month of his life (in the NICU) -- may be affiliated with compromised immunity, increased inflammation and allergies, and, finally, autism.

A few minutes later I checked my email and my beloved cousin, Loon, had sent me a link to “Tending the Body’s Microbial Garden,” by Carl Zimmer
(http://www.nytimes.com/2012/06/19/science/studies-of-human-microbiome-yield-new-insights.html?_r=1&emc=eta1), which basically makes very similar points. For instance, Zimmer describes how vaginal chemistry changes during pregnancy so that when babies pass through the birth canal they are coated with and ingest Lactobacillus johnsonii, thereby promoting a healthy immune system through the skin and facilitating digestion. Babies born by C-section do not receive these benefits. While we may take some steps to improve the health and population of gut bugs, baseline gut health is set to some degree during the first month of life.

I resolved to learn more about which foods and supplements might be at least somewhat helpful, and to at least try to reset our baselines! Zimmer’s article, however, questions the efficacy of currently available probiotics and discusses the emerging field of fecal transplants as an increasingly accepted procedure in the medical field.

So I was telling Pardner about all this reading…and he began to look increasingly uncomfortable. As it began to dawn on me that he apparently suspected I might be contemplating something rather “out there,” I decided to take this very concept – which, actually, up to that moment, had not occurred to me -- and roll with it:

Figure II: Horror, dread, incredulousness: Pardner, at the very moment I suggested he place some of his excrement in capsules for G and me to use as suppositories in a sort of “at-home fecal transplant,” since, “after all, I am a doctor!” **

“You need help!”/ I need help!

I am raring at the bit to try out my handy new phrase, “I need to find a way to get us out of this trap,” which was offered by a dear friend in response to my overuse of “You need help.” Of course, Z has chosen the last few weeks to be a shining beacon of peace with sporadic detours into insta-mega-tantrums far too shattering to bow in the face of gentle words. It’s as if she can sense when I feel I have our situation somewhat under control and is able, however briefly and incompletely, to relax and/or sidestep my handy new tools. Smartypants.


Bike Riding
It is with profound ambivalence that I share with you the news that G is now at long last able to ride his bike. He himself is jubilant and wants to go faster and faster!

However, the question remains as to whether or not he should ride a bike. That is, he is able to balance and peddle, yes. Other stuff, like stopping the bike, turning, riding on the proper side of the road and listening for cars remains elusive.

Paying Attention
Yesterday, G said, “When you said that it sounded like you were upset.” What was wrong? Nothing! We-e-ell, maybe I was being simultaneously talked-at by two small persons, but otherwise I was FINE.

So he picked up on that tiny bit of irritation? Amazing, especially for what may have been the first time he has ever noticed such a thing.  Oh, happy (not even slightly persnickety) summer day!

Love,
Full Spectrum Mama

* I couldn’t find the article, "The Whole Soy Story, The Dark Side of America's Favorite Health Food," by Kaayla T. Daniel, in the Mothering archives, but I did find this response: http://www.foodrevolution.org/mothering.htm
** (of philosophy)

Safe Boundaries, or, More Toilet Stories

Another way to approach my Full Spectrum household is through a lens of boundaries: Z habitually smashes them, while G is often unaware of them. Until recently, when he told me it hurts his feelings and embarrasses him, I would publicly joke (say, when he hugged someone he’d never met) that G’s superhero name was “No Boundaries Man.”

The issue of bathrooms is just one example of this phenomenon. Now that G is older (and he’s very tall, so he seems even older than he is) I can’t take him into the Women’s Room any more. This is anxiety-provoking. I offer the following four justifications for why this is so:

1. Because G is so friendly, he will strike up a conversation with just about anyone. Anywhere.  After a few too many overheard bathroom conversations, and several attempts to gently explain how inappropriate that was, and dangerous, I told him explicitly and in strong terms not to talk to anyone in the bathroom.  Period.

After taking Z to the bathroom the other day, we were waiting for G outside the Men’s Room for a few minutes.

“G?” I called. No answer.

Increasingly frantic, I called him several more times.

Just as I was about to barge into the Men’s Room, G emerged.

“What’s the matter, Mama?” he asked. “You told me not to talk to anyone in the bathroom.”

2. Same scenario, but this time G gets out of the bathroom first.  From inside the Women’s Room I hear him striking up conversations with, basically, any man who is coming out of the Men’s Room.

“Hello, my name is [full name]” he chirps, over and over.

“Please don’t talk to people outside of the bathroom either,” I say, having rushed Z’s hand-washing to forestall the next greeting.

“But I made a friend,” he protests. “He seems like he might have been a little weird when she was a kid. Maybe she was made fun of too. In the past.”*

Score: one for making difference seem like a prestigious club; zero for safety.

3. En route to Grandmother’s G announces that we need to make an emergency stop. I manage to exit and pull into a gas station in record time. Z is asleep. Since I have parked right in front of the entrance, I allow him to run in by himself. Relieved over having made it to a bathroom in time, it takes me a few minutes to notice that we are in a really sketchy area. I watch a spectrum of shady characters entering and exiting the building with mounting dread. I decide to wake up Z, but she is in a deep sleep so I grab her and carry her inside. We make our way to the hallway and to the bathroom door…which is wide open.

There sits G on the toilet, pants around his ankles, jacket on the filthy floor, chin resting in his hand like a small, live, No Boundaries Man “thinker.”

4. A few days before school ended, the hallway bathroom lights, which are on an automatic timer, went off while G was sitting on the toilet. He began screaming in terror and by the time someone heard him and turned on the light he was in a full-on panic attack. He was still red and on the constant verge of tears when I came to pick him up.

The two problems I was later able to glean from him were as follows: First, he knew he was in a stall, but didn’t have a mental picture of the space he was in or how to get out “in the pitch dark;” second, perhaps more importantly, he “was not done wiping [his] butt.”

This, in fact, was a sign of progress: the wipe/flush/wash hands trifecta has been a challenging one for G, with at least two out of three typically forgotten.

And then we have Z. Unlike G, Z is exceedingly aware of boundaries. She tends to see boundaries, however, as mere niceties that do not apply to her. This, too, raises safety issues. And bathroom issues. For example, we have to monitor Z’s bathroom visits at home after her consumption of a few too many bottles of skin and hair products.

Outside of the bathroom, Z’s iconoclastic confidence is an invaluable tool in achieving sovereignty. Once, she told her teacher she had to go use the microwave, marched into the fourth grade classroom, placed her food in the microwave and turned it on to fry her Tupperware and food to a melty, smoking crisp.  Curiously, no one thought to question her actions once she’d assured them she “knew what she was doing.”

She pushes boundaries with words as well. We were at a plant show in a greenhouse with my extended family when I heard her tell her 4-year old cousin, “It’s so f___kin’ hot!”

“What did you just say?” I gasped.

Z looked me right in the eyes, and said, “I said it’s so freakin’ hot, Mama.”

And Z looooves her Papa (my Pardner)…Maybe a bit too much.

"I’m gonna marry Papa," she once informed me.

"No, honey, I am married to Papa," I said. "You're his stepdaughter and that’s a different relationship that is just as wonderful. You'll always be together like that."

She stared at me like I was a fool. "When you're dead," was her nonchalant response.

Another time, Pardner was in the bathroom when Z began a world-class tantrum in line at the basement food court in Grand Central Station. Upon his return, Pardner thought Z had been injured and swept her up into his arms and away from the others in line, asking with sincere concern, “What happened, sugar dumplin’?” As he walked away, she paused in her screams long enough to request -- from this apparent new ally -- “Could you poop on Mama’s head?”

Z has such a deep, scurvy, belly-chuckle of a laugh that it sometimes seems she understands just how funny her transgressions can be.

In short, both children represent a Full Spectrum of relentlessness when it comes to boundaries. Whether because of willfulness or cluelessness, in both of their lives so far boundaries are neither perceived nor approached/avoided as society expects.

By the way, speaking of toilets, and boundaries, when I myself am on the toilet BOTH children often deem it a great time to talk to me.  I’m not talking about after I’ve been lounging for ten minutes – I mean right away. They enjoy “keeping me company” and sharing important information, such as keeping me abreast of all current cat locations. Recent urgent, through-the-door inquiries – from both children at once -- include, “How do you spell my name backwards?” “How do you say my name backwards?” “How do you say your name backwards?” and “How do you spell your name backwards?”

Love,

Lluf Murtceps Amam

* Re: s/he: Yes, G does sometimes struggle with pronouns, but in this case the individual in question was transgendered and the fact that G was so casual about this gave me hope for the world!

   Re: “In the past:” I also am so glad that G believes me when I tell him that grownups are less cruel than children and that many people who struggle with being accepted in childhood and adolescence fit in fine as adults because stuff like being cool no longer matters. Is this true? I hope so.

 

Diet I – Diarrhea

Everybody loves to give diet suggestions to people with autism (or their parents). The range of regimens that has been suggested to me is a veritable rainbow, including:

The GFCF  Diet - gluten-free, casein free

The Elimination Diet – for allergies

The “Forks over Knives” Diet – plant-based

The GAPS (gut and psychology syndrome) Diet – whole foods, no grains, lots of meat

The Paleo Diet – eat like our ancestors…lots of meat

The Anti-Inflammation Diet – no gluten, no nightshades, no sugar

Also, The Body Ecology Diet, The Specific Carbohydrates Diet (SCD), The McDougall Diet…even The Jenny McCarthy Diet…

I appreciate the good intentions behind these suggestions and I am grateful.  It is not the recommendations that bother me; it is, quite simply, not knowing who’s correct! Surfing the internet is no help. Some claims around diet reek of pseudoscience, some are blatantly commercial, most seem genuine and sincere. Each contradictory mandate has scientific backup and heartfelt endorsements.

Barring any clear consensus, we try to live by Michael Pollan’s simple edict:

“Eat Food.

Not too much.

Mostly Plants.”

Rather like…The Mediterranean Diet.

We eat mostly whole foods, follow a vegetarian lifestyle and yet do not eschew the occasional pint of Ben and Jerry’s (in the People’s Republic of Vermont that might well be unpatriotic!). This works for us, for the most part.

Nonetheless, we are gearing up for a full-on trial of a combined GFCF/anti-inflammation diet. I am taking a few months to read about these, and combine them. I want to figure out what, if any, supplementation we will utilize; so far we are looking at probiotics and vegan DHA and Omega 3’s. I also need time to process what the diets will entail and to get ready for what looks like major sacrifices in an already-tweaked diet scenario. Our spectrum comes complete with a variety of neurological and emotional differences and, as vegetarians, we already don’t eat the way most people do. I am reluctant to add yet another layer of difference!

Oh, and I want to make this shift in such a way that the kids don’t notice too much, or feel deprived, and yet know enough to graciously turn down food that’s not included in this “adventure.”* I want to truly make it an “adventure,” tastewise, but a lot of the gluten-free products are ultra-refined and some have a sandy texture, while the vegan products are often made of isolated or hydrolyzed (huh?) soy protein. I think I can do this for the three to four months I hear it takes to see a difference; facing a longer span feels daunting.

As well, I wonder if these dietary changes will “work” – and what that would even mean: I don’t think there is anything about G that needs to be fixed! So why start a “treatment?” Will I become one of “those” people? You know, the ones who drive restaurant workers crazy? For nothing? Is this a super bougie bougie project or profoundly worthwhile?

In addition to the conflicting reports on diets and autism, I am confused by findings that genetics may play a much larger role in autism than previously surmised. The suggestion that diet can “cure” autism was potentially belied by a recent New York Times front-page story about research into genetic links with autism (http://www.nytimes.com/2012/04/05/health/research/scientists-link-rare-gene-mutations-to-heightened-risk-of-autism.html).  With advances in genetic testing and analysis, the prevalence of genetic links with autism is expected to increase exponentially from this juncture. 

Still, environmental and other factors (such as diet) can strongly influence the real-world expression of our genetic blueprints.  The study of epigenetics may ultimately show that dietary changes correlate strongly with autism – or not.

I applaud all families and individuals who make positive changes in diet that lead to improved health on any level. And I know from personal experience that some of the sensitivities that tend to accompany those on the autism spectrum and those close to it (such as those with sensory processing differences) can be mitigated by changes in internal (eating, drinking, tasting) or external (seeing, hearing, smelling, feeling) exposure.

G and I do have some severe chemical and sensory sensitivities. G gags and gets reflux from many foods. He is highly sensitive to certain sounds, types of touch and tastes. For me, it is more about smells and visuals. I will get an aura then an excruciating vomiting migraine after walking down a cleaning-product aisle or smelling certain scented lotions. There are times when I need to walk with my eyes mostly closed, under certain lighting conditions or when there is too much going on visually. G sometimes makes tubes out of his fingers to look through, so as to limit visual input to a manageable and intriguing subsection.

We both have bumpy skin on our arms and legs, which, I have recently learned from “The Autism Revolution,” may be a sign of Essential Fatty Acid deficiency. On the other hand, some sources claim these bumps are due to food or environmental allergies.

It is, literally, a lot to take in.

If I could wave a magic food item and change something, what would that something be? Would I make us not always tell the truth and be upset when others, by our lights, don’t? NO!  Would I make us suddenly able to cold-bloodedly navigate what we both view as brutal social scenes? NO! Would I make us see the world just like neurotypical people do? NO!  (Everybody sees the world a little differently anyway!)

I would sooner change the rest of the world than some of these qualia. Nevertheless, would it be nice for both G and I to be more flexible, more interpersonally perceptive, less obsessive? Perhaps. But what if we went too far in the other direction and were then overly flexible, social-climbing dilettantes? I’ve always admired Aristotle’s Doctrine of the Mean, which posits a lack and an excess for every virtue** -- and counsels us to find the middle ground. A whole system approach to balance might enhance weak skills (lacks) while retaining strong ones (those that are “just right”). But just how might diet per se do that, exactly?

Here are some relevant lacks and excesses:

Virtue: focus: Would it be easier if G could get from his bed to his clothes in the morning without being distracted by every interesting item en route (Lego? Floor board? Cat hair? Sure!)? Maybe. But what if one day, during that process, he discovered the secret to nuclear fusion or the alchemy of waste to water?

Virtue: moderation: What if I got “cured” and stopped making my lists? I love my lists! I got my lists from my sensory-challenged Mama! Or what if G stopped loving pokemon and heavy metal and started liking Jack Johnson and weapons and cars?

Virtue: wisdom: As a dear friend said, “You can’t and don’t want to change who you are, you just want to do whatever you can to remove the bullshi+ that keeps your true essences from shining.” In Yoga philosophy, that bullshi+ is the only true ignorance, and is called Avidya (literally, not-knowing). Of course I want G to be comfortable in the world, his best and whole self. When we are overwhelmed by sensory processing differences and their repercussions, we miss a lot. There are things we do not, then, know. But who is to say there are not things we know that others do not?

Virtues: acceptance, empathy: The fundamental question seems to be: should we medicate our differences? Cleaning off the gook that hides our true Selves from ourselves a la Yoga philosophy is one thing (and many sensitivities that cause overload and impede processing may be “gook” in this model), but trying to squeeze everyone into one neuro-psychological paradigm is another. Who defines this difference? Do we each decide for ourselves?

I might be able to get behind improvements in some of our chemical and sensory sensitivities if our emotional and mental sensitivities remained undiminished. In general, though, I fall pretty squarely in the pro-neurodiversity camp. Then again, my son is (and I am) relatively high-functioning.

That being said, what else might diet affect? In other words, why bother?

Well, there is the diarrhea.

We haven’t got the steadiest stomachs in our Full Spectrum household. Let me amend that “we:” Pardner and Z are tanks, able to eat anything with complete physical equanimity; G and I are muy delicato.

In a word, we have diarrhea. You think you have diarrhea? No. We have more diarrhea. Gas, too. We keep a box and toilet paper (“the kit”) in our car. On car trips, we may stop more than once an hour. Before going anywhere by any conveyance we assess the necessity for a preventative poo.

An example from last week: We were one hour into an ostensible six-hour drive to my twentieth Bryn Mawr reunion when G announced that he had pooped his pants. He kept asking, “Are you mad at me?” and I kept telling him that I wasn’t. I felt terrible for him – and unenthusiastic about what we would need to do to deal. As soon as I could, I pulled into a gas station. G ran in, yelling, “Where’s the bathroom?” to no one in particular, with Z and I trailing him. In the bathroom, he discovered with great rejoicing that he had been wrong. An hour later, we weren’t so lucky. Then we hit traffic around New York City and were bumper to bumper for four hours with no way to pull over. Between traffic, bathroom stops and incidents, that drive took almost ten hours. I vowed never to go anywhere again. 

And I wonder: Will G be traumatized? What could I have done differently? How can I avoid these scenarios in future?

One possible explanation for G’s and my stomachs is our swimming in the Rio Tuira in La Palma in the Darien jungle in Panama. This cool and refreshing river is rife with alien (to us) parasites that we have brought home with us upon occasion. Might I suggest that maybe after three days in the heat of the Darien jungle in Panama you too would stop caring that the outhouses all empty into the river and dive in and allow your child to do the same, along with all the other kids?

Another possible explanation is lactose/casein and/or gluten intolerance, which seem anecdotally common in people with autism.  Or perhaps our digestive systems are impacted by some or all of the various lacks (beneficial flora, good gut bugs, DHA, enzymes) or excesses (bad gut bugs, toxic heavy metals) that people on the spectrum tend to present in their guts.  We need to reach that elusive Digestive System Mean – and the path is unclear.

Whatever the case may be, our Full Spectrum household is always just a Yo-kids Squeezer away from the scatological. I am hoping that switching to Soy-gurt will help.

Whole body approaches are designed to improve connections between and within our various systems and that is one reason diet appeals to me. I guess if I could wave a magic food item and change something it might be how completely befuddled I feel about what we should eat!

I may have to take a “my bad” on this one:

1. “I don’t know…”

I don’t know what the right diet is for us. Should we nix dairy? Cut out wheat? All gluten? Gluten and dairy seem to be the biggest offenders, stomach-wise.  Or, as some suggest, should we steer clear of All grains? No soy, too? Then we just eat nuts and dried beans for protein? Well aren’t beans pretty…gassy?

2. “I messed up…”

I pooped my pants…or you did -- because I couldn’t get you to a bathroom fast enough.

I grumped when I got confused and felt bad about feeding you a meal that I worked hard to purchase and prepare. My choices seemed good by one standard but not by another.

3. “I’m sorry.”

A while ago, G and I experienced an extended weak-stomach period. I asked my Laotong (“old same” – a term for lifelong best friend in Mandarin) Lili – a bastion of practicality as well as magic -- “How many times a year is it normal to poo in your pants?”

“None,” she informed me, much to my surprise.

I had thought one or two seemed reasonable, under the best of circumstances. She clearly and unilaterally disagreed.

However, Lili recently returned from a stomach-challenging trip to Ethiopia and I am hopeful that she will change her conservative stance on reasonable-poops-in-pants per year.

But in case she doesn’t, we are still looking into diet.

Gotta go!

Love,

Full Spectrum Mama

* I casually mentioned our new “diet” to G and he asked me not to use that word “because it makes me feel fat.” I explained the various alternate meanings of the word, but we decided to refer to our dietary changes as an “adventure” instead.

** For example:

            cowardice – courage – foolhardiness

            impatience – patience – inertia

            gluttony -- temperance – insensibility

See also:http://plato.stanford.edu/entries/aristotle-ethics/#DocMea