Saturday, June 30, 2012

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?”

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.


Monday, June 18, 2012


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 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.

Full Spectrum Mama

Monday, June 4, 2012

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 (  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!

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