TRASHY

Summer is here and the Full Spectrums are, one might say, less productive than they might be. It's been all kids (and lots of fun, truly) all the time since school got out and there hasn't been a whole lot of writing time, but I did manage to pick up a "People" magazine today. All in the interest of research, of course. 

Now I love a trashy magazine as much as the next person, maybe more, so I was stunned in my relaxing reverie to read this headline: "Heros Among Us: Crusading Against Autism." Against my better judgement - I Was trying to relax! - I read this piece on, guess who, Autism Speaks. Apparently, what Autism Speaks does is "restore the spirit and hope that autism tried to take away." 

With all due respect to a wide range of families and situations, I very much beg to personally differ with that assessment !

I managed to quell the kiddos long enough to write this letter because I wanted to, you know, Speak:


Re: "Crusading Against Autism"
To the Editor:

Are you aware that many autistic people are able to read? In fact, many are avid readers.

As a mother on the spectrum with an autistic son, I was deeply saddened to see this headline. I will NOT be keeping this issue in the house, in case my dear boy, who is perfect just as he is, happens to fall upon this article. I would never, ever want him to feel that he himself is seen by some as something to be fought against, or someone who takes hope away. 

Sincerely,

Dr. [FSM]

Love, 

Full Spectrum Mama

SUGAR, DEAR

You do keep Dear Sugar in your bathroom, yes? So that when you wake up first thing in the morning and think “I can’t do this day,” or when you get that precious three minutes where you sit on the toilet ALONE pretending to poop, you can take the book in your hands and Sugar can be your oracle and give you exactly what you need to open the bathroom door and emerge human and more whole just by opening up the book and reading? 

If not Dear Sugar, what is your DEAR? What shows you TRUTH, on a bed of laughter, with a chiffonade of tears? HOPE, wrapped in brutal honesty, with a core of sweet, sweet love? PERSPECTIVE, nestled in a can of whoop-as$, with a side of I-get-it-though?

Ideally, everybody should have something like this, a tiny escape-comfort that is always there when needed. Maybe for you it’s music, or cooking, or...? Books have always been that thing for me, as they are for my son. Even at parties. 

I was recently invited by a Very Big Deal Agent to write a book proposal for her agency. I am still struggling with the requirements of the proposal, above all, the selling-of-self. But I think that very quality of being there for others in a very honest way makes this writing worthwhile, and makes a book a valid proposition for this blog. So I am doing my best to get it done.

At the same time, summer is looming. I see people posting on facebook about how they “can’t wait,” and I try to share their enthusiasm, and heaven knows I want my children to have those idyllic summers of which people speak, but—but...: I’ve never had a chance to not be working in the summer, which makes things sometimes quite rough. This year I at least had the foresight to coordinate what few camps the kids attend (hey, both kids in camp during the same week: my big insight from summer 2014!), so that I will have some time to work while both kids are having summer fun. (Have people noticed that camp often costs more than one can earn? What’s up with that?)

Like so many of us, I also hope that I too will get some glimpses of summer fun. That during the times when I am with my kids, I will actually be with my precious kids, rather than being physically present while mentally worrying constantly about keeping us afloat or getting other stuff done, such as The Proposal. I guess that would be a form of practicing mindfulness.

Ever wonder, though, why it’s so hard to remember to be mindful? Perhaps it’s because one’s mind is...full? In those full-brain and heavy-heart moments (big and small), I know Sugar will help. Mostly, she’ll remind me that it’s on me to make things right, to feed the good wolf, to see clearly and be present and not take things personally. Basically, you know, to be mindful. But she says it in a way that I can really hear, my dear, dear Sugar does.

Well, my friends, I am heading out now for the last-day/half-day* pickup rounds. Here’s wishing you plenty of whatever Sugar-esque entity feeds your soul this season and beyond. Summer...starts...NOW!

Love,

Full Spectrum Mama

* Wee tad of a rip-off there?

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.

A Summer Idyll, Full Spectrum Style

This little vignette shows how Full Spectrum parenting is full of teachable moments...for Mama!

We have a decent swimming hole about five minutes’ walk from our house. We went there the other day when Z was just in a mood. Mama was not in the mood for this mood. 

So it wasn’t a great combination.

As G swam happily, Z threw sticks into the muck of a small rock pool and shot copious gratuitous dirty looks my way. I jumped in and joined G for a while, trying to enjoy myself despite one-third of our party being in a snit, and then slid out and approached Z.

“If you want to go swimming, now is the time,” I remarked.

From the water, G made encouraging river otter sounds and tried to make Z laugh.

She ignored him.

I am always hoping these two Spectrum opposites can be “therapeutically” complementary to one another. Z might help teach G how to relate to someone who is socially savvy (for instance, getting him accustomed to mild, good-intentioned ribbing); or G could show Z that being generous (i.e. taking the smaller piece of pie) isn’t a sign of weakness. Sometimes it feels like quite the opposite is occurring. At the river, G was being sweet and blatantly making himself vulnerable to rejection and it wasn’t swaying Z’s tough stance one iota.

My Great Grandmother Noni, a widowed mother of a huge family and a fantastic and irreverent and loving woman, gave her children the following sage parenting advice: “Don’t see everything.”

I had seen Z’s sourpuss and her unwillingness (inability?) to respond to G’s overtures and I just couldn’t take the rudeness.

“In this family we treat each other with kindness,” I snapped. “Period!”

As Black and White and Spectrum-y as I can be, I have to wonder whether some of the moral boundaries I set for my family fit the individuals concerned.* I am always telling G, “Use your most powerful [pokemon-style] move: Ignore!” when he feels that Z is tormenting him, yet here I was denying her the right to this mighty move – and big-time incapable of it myself! Maybe the kids were learning from each other in ways that weren’t so obvious to me; maybe I should have simply accepted – “not seen” -- the interaction and, as Noni’s son-in-law (my Grampy) used to say, “Leave it lay where Jesus flang it.”

Is it true, as a dear friend recently told me, that for parents the acts of holding a moral center and loving unconditionally are irreconcilable? If so, which do I value more?  As with many in my raised-by-busy-boomers generation, I felt at times a dearth of both in my upbringing.  Am I now, in attempting through the ways I treat my children to right certain wrongs done to me in those realms, thereby inadvertently creating other wrongs?

In a word? Yes. (At least becoming a parent sometimes helps us to better understand and empathize with our own parents!)

Home we walked, Z stomping and screaming the entire way. I could not carry her, because I was walking her bike. G, though, was on his bike, and I very reluctantly let him ride away from the ruckus. Since Z’s walk-yelling slowed us down, G got home maybe four minutes before we did.

He awaited us at the very edge of the driveway. Hesitantly, looking slightly uncomfortable, G asked, “Did that woman give you my message?”

“What do you mean?”

I looked over at my filthy car: “Help, my Mama is gone” was written in the dust on the back hatch.

But Z was radioactive and I needed to get her inside. A public tantrum can be remarkably depleting for all concerned. Safely in the house, she proceeded to glower her way through dinner. She lost the privilege of dessert after refusing to respond to basic queries and jovial repartee. After several further chances she also lost the popcorn, DVD, and nightly reading of Harry Potter privileges and was banished to the bathroom to prepare for bed. Which she also refused to do. As I was lifting her onto the toilet in the hope that she would deign to use it (channeling Xiao Chuan Ayi all along: “You know what? Now I am going to have to lift your body onto the toilet,” stated very, very dispassionately), she pulled hard at my thumb and I heard, through the din, a ripping sound.

Z had torn a ligament in my thumb.

Funny how one can painstakingly remove oneself from all sorts of negative situations and then find oneself feeling violated by a small child in the home that houses you both. As Z gets older, the violence of her tantrums is increasing, along with her capacity for destruction. Still, there is hope here: she seems to be gaining more security and so is tantruming somewhat less frequently while enjoying more healthy reactions overall.

I can imagine a time when Z will have learned to calibrate and refine her social persona to the point where her behavior – at least in public -- is entirely ordinary.

As for G, I am not so sure. It turns out that while he had been waiting in the driveway for us to return from the swimming hole, he had run out into the road and flagged down a car to tell the (female) driver that his “Mama had disappeared,” and asked her to “please, try to find her, and tell her that I am looking for her.”

In subsequent conversations G admitted that his actions had not made a lots of sense, considering that he had seen me mere minutes before at the swimming hole and had known Z was having a colossal tantrum. He just could not put all the relevant information together through his anxiety. Perhaps this was a Theory of Mind** Moment.

Come to think of it, a woman had slowed way down and peered at me in a strange way as we were walking home.

And here I’d thought she had given me the look because of my beet-red, wild-haired, screamin’-like-a-banshee daughter!

Love,

Full Spectrum Mama

*  I love this quote from The Autism Revolution, by Martha Herbert, MD, PhD with Karen Weintraub: “I’d rather spend time with someone who is interested in me than someone who is trying to fix me or always telling me to do stuff that doesn’t make sense” (p. 162).

** Theory of Mind is a philosophical/psychological concept that is sometimes used by neurotypical theorists to describe some expressions of autism wherein an individual may be – or seem to be -- unable to project or attribute mental states beyond his or her own to others.  Here, one might say that G was unable to conceptualize where we were if we were not at home with him  (as we should logically and historically have been). This theory, though, can be turned around to accuse neurotypical people of not having a Theory of Mind that would fit in a more autistic-centric world…

If you do go to this link, please read to the bottom of the autism part, where you will find a more nuanced view:

http://en.wikipedia.org/wiki/Theory_of_mind

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)