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.)

Our Spectrum Through a Lens of Rules

Do you obey rules?

Why or why not?

What about the children you know – yours or others’?

Continuing on the trajectory that began in my next-to-last post about boundaries, we now turn to those more concrete, explicit boundaries known as “rules.”

Figure I: Chart of Obedience

This chart describes some of the main ways individuals react to rules.

People may obey rules out of a sense of justice or fear or respect. They may do so for the sake of appearances -- or because it has not occurred to them to do otherwise. People may disobey rules because they are not aware of them – or are aware and simply do not care. Or they may do so because they are rebellious and see rules as made to be broken. They may enjoy being sneaky, or feel that they need to be sneaky in order to do what they want to do.  In this chart, the motives of justice and injustice meet on the spectrum, as do two expressions of apathy.

Finding ways to help my Full Spectrum household follow those rules I deem important has been an ongoing challenge. In fact, when I consider getting my children to obey rules, the classic notion of “herding cats” comes to mind. G cares deeply about justice and will sometimes follow rules for this reason, but he tends toward the “Lack of Awareness/Who Cares?” quadrant of my chart.  Z typically obeys rules for the sake of appearances or out of fear or respect, while having a very strong propensity toward sneakiness and rebellion. I’ve yet to determine if, for Z, defiance is based on a feeling of injustice. 

In basic societal terms, it seems that G wants to be “good,” and is sometimes unable to figure out how, while Z seems to want to be “bad,” and is only sometimes successful due to constrictions which force her to act “good.” Obviously this is an oversimplification, and not language I would ever actively use in parenting, but it does reflect how I often feel as we try to navigate the world of rules as a family.

I was fortunate to encounter my parenting idol, Xiao Chuan Ayi (Auntie [given Chinese name]), when G was but a lad of two.  Xiao Chuan Ayi is unflappable, serene, as stable as I have always been high strung.  And she has two brilliant, active sons.

Her standard admonition is very simple: “You know what? That is not safe [or kind or polite or…],” said with great poise and tranquility and authority. Her boys could be breaking all sorts of rules -- swinging from a chandelier with machetes, making war cries and sprinkling those below with water balloons -- and, with a word and a Special Look from their mother, they are standing at attention. On the ground! She would surely argue that they don’t get off the chandelier immediately 100% of the time but, trust me, they listen more than most.

 Following the admirable Xiao Chuan Ayi, “You know what? “ became my earliest go-to phrase. “You know what? That is not safe/kind/polite/[fill-in-the-blank]…” was a relatively effective way to at least communicate rules and boundaries. if not to actually enact them in each instance.

The problem was and remains that I have neither what Xiao Chuan Ayi terms, “The Chinese Look of Death,” nor its Whitey McWhiterson equivalent.

“What if I got angry?” my demeanor and past conduct seem to say to my kids, “Oh yeah? Well…What if I-I-I…raised my voice to a fairly loud volume and then told you, um, you couldn’t have any dessert but, uh, you could certainly have some blueberries with a teensy bit of Hershey’s syrup on them? Huh? Huh??? What then!”

Very threatening.

“You know what?” Infractions in areas I really care about – kindness, respect, safety – may call my Full Spectrum of Doom down upon my chilluns. In those instances I am able to invoke a fearsome aspect of myself without, indeed, really even trying. I just – some stuff I just don’t care about, even though I am supposed to.  Sure, I would like my children to know how to properly set a table.  I have a hard time, however, mustering obedience-ensuring wrath over a fork in the wrong place.

But I should not imply that my friend rules through fear. To be clear, Xiao Chuan Ayi’s Chinese Look of Death may be most remarkable in how unnecessary it is -- because the woman just exudes calm. To wit, G, Z and I were recently at her house on a lovely summer morning and, through a series of stomach-related mishaps, managed to cover her entire bathroom floor (heck, her entire bathroom) in diarrhea. After cracking up big time (now that’s a good friend), she whisked G and Z away so I could deal with the disastrophe at hand.

While I scrubbed away upstairs, the children – those same children who had not stopped flapping their jibs for the first three weeks of July -- stayed downstairs with their Ayi, quietly entertaining themselves.  As I attempted at length to restore my dear friend’s bathroom to some semblance of cleanliness, not a peep was to be heard. Meanwhile, Xiao Chuan Ayi was…accomplishing things!

Or consider G’s kindergarten teacher, Mrs S.* Mrs. S is of small stature and looks like a stereotypical blonde angel. She is gentle, kind and quiet. Yet she was in complete control of a classroom that consisted of eleven rambunctious boys and two girls. Imagine the boy-filled, first-time-in-school chaos, and the tiny teacher in its midst. Yet: “Now girls and boys,” she would say softly, and the Entire Room would Instantly hush!

News flash: that type of gentle admonition leading to thrall does not often happen in our household, despite a much more favorable child-to-adult ratio.

Sometimes kids don’t listen. As parents, we must choose our battles. One task, then, is deciding which rules matter to us. The second is figuring out how to convey their importance in a way that makes sense, so that our rules are clear, just, fair and compelling.  Then we try to follow through with consistency and regularity.  If we can begin to do so with the inner authority and peaceful mien of a Xiao Chuan Ayi or a Mrs. S, so much the better.

I’ve heard tell my paternal grandmother (who taught first grade) had this gift, but such subtleties do not come naturally to me. From where I stand on the spectrum, rules that are just and good are meant to be followed and those that are not just and good are to be disregarded. Simple. Explaining why this is so feels alien.

Modes of enforcing rules seem either mysteriously subtle or ham-handed or violent.  Also, ineffective: yelling, exhortation, protracted explanations and dire consequences all have little impact given Z and G’s Spectrum locales. The way they handle rules could ultimately affect their overall well-being and chances of success in life, ergo, the need to cultivate new approaches.

The gentle authority of teachers like Xiao Chuan Ayi, Mrs. S, and my Grammy seems a tricky, elusive, extremely worthwhile art, and certainly one to which I aspire. 

Subtly!!!

Love,

Full Spectrum Mama

* Mrs. S will be Z’s first grade teacher in the fall, and her placid, earthy solidity promises to be a great match for X’s mountain-moving attempts.

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.

 

Need…Help…

A year ago last month, we first sought refuge with our attachment disorder specialist therapist. Neither Progressive nor Old School nor any other parenting efforts with Z seemed to be working and home life had become nightmarish. Within days of our first session we were able to make significant changes and improvements to our actions, Z’s behavior and quality of life for our whole family.

The therapist’s most useful suggestion was to tell Z, at the very first sign of acting out, “You need help. It’s my job as your mother to help you.” I would take her into my lap and bundle her up into a snuggle position and say this, sometimes tailoring it to particular circumstances, i.e., “You need help right now with being a good listener,” or “…with doing safe things.”

In this way, I would stay in charge, thereby helping Z to feel safe, yet at the same time be nurturing and loving. This strategy nipped many a giant blowout in the bud, which saved lots of energy for Z to grow in more healthy ways.  It would not be hyperbole to say this plain phrase changed our lives considerably.

Z, however, is far too smart for such a simple approach. It took a few months, but it was not very long before, in inimitable Z fashion, she wrangled control of these words of wisdom.  If, by some chance, I missed her signals that she was decompensating, or if I was just too dang tired or busy to drop everything and get down on the floor and “help” her, and, if, then, things degenerated and she began a ginormous tantrum she would often begin screaming at me along the following lines: “YOU BETTER HELP ME! I HATE YOU! YOU WON”T HELP ME AND I TOLD YOU TO HELP ME!” and so forth.

One might well argue that a parent’s duty is to help their child, no matter how distasteful the prospect might seem at a given moment.  Z’s attitude in this context is certainly not conducive to cuddly, helpful helping, but FSM is a big girl and usually able to transcend such reactions. The larger issue is the fact that Z is able to wrest control of the situation, and put Mama in a position of being unable to do the very thing she needs to do (“help her”) because allowing Z to be in charge would be destabilizing and frightening for her, especially in meltdown mode.

I have a WROE (wide range of emotions) when stuff like this happens. Somewhere, rather deep down at the moment, I feel love and empathy for my child. I partly feel the way I felt when Z was little and would cry in this jagged, angry way that made me feel like running away from an enraged spitfire, rather than mothering a small and helpless baby. An aunt told me these sounds are known as  “non-attachment-promoting crying,” because parents do not naturally respond to such sounds in positive, nurturing ways. Also, I am confused: I have no idea what to say instead of “You need help,” and the phrases I do come up with in the moment are either unprintable or saccharine. I want to mean what I say.

In addition to never going anywhere again (please see http://fullspectrummama.blogspot.com/2012/06/diet-i-diarrhea.html) I am also never going to a party again. Invariably, I find myself flying solo at parties (Pardner is a chef and is essentially gone from Thursday morning early until late Sunday evening) with two hopped up kids, feeling overwhelmed before the sweat beads even form on my single margarita.

G starts to get anxious days in advance: “Will there be anyone there I know?” “What if there is no one for me to play with?” I try to give him strategies for socializing, but by the time we arrive he is in full needy force, hitting the ground running, armed with his customary, hand-extended, no-eye-contact “Hello-my-name-is-G–I-like-Legos” introductory act. When this falls flat, he usually follows me around saying, “There is no one here I know,” and “No one wants to play with me.”

Z, falling as she does on the high social acuity slice of the spectrum, makes friends immediately. At this particular party, her new friends helped her climb about ten feet up in a tree and then removed the ladder and left her there. She asked a passerby to let me know that she had climbed high up in a tree, and to please come look… Neither passersby nor little friends seemed to notice the potential danger in a small child being several times her height in a tree with no way to get down. She comes across as that capable, after all.

Post-rescue, while I was cheering G on in a race, in which he would come in near last but not notice (go G! Seriously!) I happened to look inside to the drinks table, where Z had a two-liter bottle of cola in two hands and was pouring what remained of it down her gullet.

I ran inside.

“What are you doing?” I asked, aghast. (This is exactly what one is not supposed to do: children with attachment disorders need surety from their parents.)

“You said I could have a drink,” she replied in a saucy tone. Several admiring girls a bit younger than Z stood around watching wide-eyed.

“Didn’t you know that I did not mean coke? That children don’t drink caffeine?” (Wrong question: see above.)

“Yes.” (Reluctantly, with sulkface.)

“I guess right now you need help with making healthy choices,” I told her, pulling her to my side and taking the empty bottle. ”You are going to stick with me for awhile.”

I thought she would like being doted upon. Apparently, at this particular juncture, doting was humiliating.

What next ensued can only be described as a major, whomping, shame rage tantrum. After offering clear guidelines in a deceptively calm voice as to the consequence of being removed from the party if she could not stop raging, I carried her kicking and screaming to the car. I shut her in while she flailed and shouted and tore anything in the car she could get her hands on. 

Having previously childproofed the car, I had only to remove G’s precious “Complete Pokemon Guide” as a precaution. I sat down on the hood with that large, well-worn book in my lap, and tried to wave cheerily to the faraway people enjoying themselves in a variety of pastimes on the lawn. G had given up on the party kids and followed me to the car. He lounged companionably next to me. We watched the festivities with mixed feelings: it would have been fun to be casually part of it all…But was that really a realistic option?

Inside the car, the screams raged on, punctuated by punches to windows and seats.  G and I tried to be positive, chatting about what a lovely, green day it was. When I turned my attention to the sounds I could hear Z shouting, over and over, “I! NEED! HELP! YOU! STUPID! MAMA!”

A sort of funny thing about all this – funniness being, I suppose, relative and contextual – is Z’s miraculous resilience. Once she decides she is done with a tantrum, she appears to be immediately 100% fine…Unlike the rest of us, who are still reeling hours later.

I returned to my perch on the trunk to wait for that eventuality. G is, unfortunately, accustomed to Z losing her temper and was, fortunately, unphased by the state of affairs. “Hey,” he said, noting the Pokemon guidebook, “This seems like a great time for a Pokemon battle!”

“It sure is,” I sighed, and mustered a smile. “Sounds fun!”

I meant it. Sure to be better’n the parenting battle I had just lost to a gaggle of little girls and a large bottle of soda.

Love,

Full Spectrum Mama

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

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