Monday, March 26, 2012

Would you rather…I

Want to make me cry? Reduce me to a quivering, sobbing, snot-covered mass of mama-jelly?

Ask about Z’s ID card.

The day I met my girl, she was just over nine months old. Dressed in a little light green and white jumper from the orphanage, she was astoundingly beautiful, if looking a little scared. She initially came across as quiet to the point of being possibly drugged, and was clutching her identification in her tiny hand. Why did she have to hold her own ID card? Why did my baby have to bear that responsibility?

When I think of most nine-month old babies, I cannot imagine they could be relied upon to hold on to anything consistently. There was Z, in that moment where she was passed from her Ayi (in this context, caregiver) to me, all alone in the world and bravely responsible for her own miniscule self and her very own identity.

Want me to cry some more? Ask me about “Tommy.”

Tommy lives up the street from us in a quaint, slightly run-down little house with his elderly parents. When Tommy was in school, Pardner’s ex-girlfriend was his teacher. In those days, “special needs’ children were not mainstreamed and he went to a “special” school. Pardner used to come into the classroom and play his guitar and harmonica for the kids and he has fond memories of Tommy and the others in the class dancing with total glee. 

Now Tommy is middle-aged, a pudgy man with his pants hiked high and a bald spot. I usually see him walking jauntily up and down the street with his walking stick, always staying in sight of his house and waving at everyone who drives by. He always seems happy. Every time I see him I think of his parents: I wonder if they worry about who will take care of him when they are gone. I know full well there are social services and safety nets but what will happen to him when his parents are no longer able to run that household? What if what Tommy wants is to stay in his own home?

A few weeks ago, we had a big snowstorm. I didn’t see Tommy for a few days and I noticed that there was no smoke coming from the chimney of the house. The small driveway remained without tracks. I haven’t seen any activity at his home since. I am afraid that time has come.

These two tear-inducing items represent the two poles of a Full Spectrum of fears for my children. I have a daughter who was able to --  in a very real way -- take care of herself at nine-months old…because she had no choice. Almost six years later she remains trapped in a massive control scheme, her babiness largely inchoate. I have a son who is very bright and desirous of independence but who may never be able to live on his own without assistance. I worry, I worry.

So many faiths advise us to “be here now.” We are warned that the present is all we have for sure. Our nowadays are sprinkled with lovely small moments, sometimes bumpy but always full of big, deep love. Wisdom traditions notwithstanding, I worry about the days to come. What is the right amount of worry, now and in the future? What is the right amount of care?

To be continued…

Love,
Full Spectrum Mama


PS. Dear readers, thank you so much for your support, wisdom and comments! I have tried to change the settings so that anyone – including anonymous followers (as most readers are) and random readers – can comment, so please try again if you have experienced difficulties posting.  Also, please feel free to email me for any reason. I haven’t figured out why some people are still having a hard time joining or posting but am happy to post comments for you or let you know when posts come out. Thanks and love, FSM

Wednesday, March 21, 2012

Helicopters in Our Rainbow

G had a major project due last week. He was to create a poster to illustrate and outline a presentation on his research on Grover Cleveland. His written report had gone well, mostly because he enjoyed it, but I was concerned about this more public aspect of the work. Difficulties in reading social cues and a lack of interest in appearances, both aspects of aspergers syndrome, sometimes conspire in undermining G’s classroom endeavors.

Here’s a Full Spectrum question: how much and in what ways should we help our children with homework? There is a veritable rainbow of answers to this query. It’s an ultra-regular problem, but when a child has learning differences it feels perhaps even more confusing both vis-à-vis home and school. The spectre of becoming a helicopter parent is never far from parents of many “special needs” children. In school, because G has a diagnosis, some teachers may have lower expectations of him. Luckily this year, his teachers – who are wise, experienced and huge of heart – seem to get my boy.

So, home…and G himself. I know he is capable of doing just as well as other students (and even better in certain areas), but does G know that? Encouraging him to accomplish things on his own is one way he may gain this self-knowledge.

Tuesday Evening: The Project
I gave G some guidance, including drawing up a draft outline for him, in standard outline format (roman numerals, capital letters, etc.). Then I let him complete the poster on his own. Some (vast) part of me wanted to hover over him and make sure he made something that would measure up – by mainstream standards -- to the other kids’ work. But more than that I wanted him to express himself, and hoped it would build confidence and satisfaction to feel trusted and do a good job.

He proudly brought me his poster. He had entitled it, “Uncle Jumbo.” “Good start,” I told him. “Catchy.” He’d decided the day before that our pictures of Cleveland from the encyclopedia were adequate for the final presentation. He had affixed copies of these two small black and white pictures on an angle and his handwriting slanted precipitously likewise. The outline read from right to left. But he had lots and lots of information in there and had learned a lot and had a fine time doing so. All in all, it seemed he’d done a darn good job for a fourth grader.

Wednesday Morning: The Turn-In
My heart sank when I saw the other posters. Straight lines, multiple color photos and computer-generated text abounded. I knew no one could’ve worked harder or more earnestly on their posters than G had, but these looked so, so much more…professional.

As I walked back to my car after drop-off I suddenly realized that other parents must have been giving a lot more input to these projects than I had deemed appropriate. Basically, I had over-underestimated the “normal” level of parental involvement in schoolwork. Between parental non-involvement and helicopter parenting (and beyond) there must be a continuum of genuinely helpful help. I decided I’d missed the mark this time, and that I should’ve at the very least recommended straight lines.


Postlude: Tuesday Afternoon: Pickup
The kindergarteners all walk down the hallway carrying shapes made by linking toothpicks together with mini-marshmallows. Each child proudly bears his or her little diamond or square with the greatest of care.

G and his one friend (who is coming home with us) approach, having noted the marshmallows. I have a cache of vegetarian marshmallows at home and I promise to serve them as snack. I often agree to things I would not otherwise do in order to encourage this rare and precious friendship. Then I further agree -- again, against my best instinct -- that we can go straight home instead of going to the library to download extra pictures of Grover Cleveland for G’s poster (which is due the next day), the faster to eat marshmallows and play.

Next comes Z, sashaying down the hall with the most spectacular assemblage in her arms. Her marshmallow project is in a different universe, nay, a whole different Reality than the others. One of the great aspects of having a child who was adopted is one can really go to town with bragging: “Hey, I can’t take any credit but…this kid is spectacular, eh?”




                                                    Figure 1: Z, Marshmallow Mastermind


Hers was by far the most technically adept and visionary marshmallow project in the whole bunch. Z, while extremely clever and quick, is not generally the most assiduous student, so I reckoned the candy element was a key factor in the magnitude and fabulousness of her creation.

Later that evening, as G worked on his poster, I would read his report card to find he has been “off his game” this winter. He has been focusing more energy than usual on social issues – somewhat to the detriment of his academics -- because his one friend is so important to him. Learning to share this friend or to be apart from him sometimes has been a challenge – and a strain on both boys. I would realize that by caving in to not going to the library I had reinforced this trend.

Later that week his teachers would assure me that social tension is, for fourth graders, essentially “normal.” Social learning is something most upper elementary students are struggling to balance with academic learning as increased intellectual demands jockey with more complex social dynamics.

In the end, even after getting a look at the other students’ posters, G felt really great about his project. In the interest of more conventional success, I could have done the bulk of the work myself. Otherwise, even in the quiet, socially unchallenging environs of our home, no amount of friendly cajoling, firm guidance or menacing threats could have gotten G to produce a precision-masterpiece equivalent to Z’s for his presentation on Uncle Jumbo.

But…marshmallows might’ve worked.

Had I only known!

Extremely occasionally, Full Spectrum Mama discovers A Secret to the Universe. This is one of those rare moments. The secret is…Marshmallows. If all schoolwork -- all activities and interactions -- could just involve marshmallows, everything would be perfect. Sweet, soft marshmallows (vegetarian for us, please) could sweeten the toughest endeavor of any child (any person!) – and cushion the frequent falls of every imperfect parent (and other human people).

Love,
Full Spectrum Mama

Monday, March 12, 2012

Vocal Fry vs. Gortles

Z was waiting for me at pickup the other day with a big, saucy grin on her face. She held up the latest Scholastic book order and announced: “Justin Beaver is in here?…He’s HOT!”

In a sudden transformation as surprising to myself as to Z, Full Spectrum Mama turned into a fascist, super-conservative, sexist anachronism. I heard the following phrase burst from my formerly liberal lips: “You are! Five! Years! Old! Okay, Six! You will NEVER say that word again!”

My rule of fear and oppression complete, Z felt able to respond: “Um, okay Mom.” Eye roll.

Then, resisting the urge to prove that ***I*** am the one who knows not only how to Read but to correctly pronounce Justin Bieber’s name as well, I took a step back to dispassionately analyze my reaction.

The first language Z heard was the local dialect in Fuzhou (a.k.a. Linchuan), in Jiangxi province in China. I am sure she also heard some Mandarin (which I have continued to integrate into her life, though not as much as I’d like). Until she was almost ten months old, she’d never heard a word of English. Nonetheless, Z has been speaking it in complete sentences with perfect diction since she was 18-months old.

What is truly remarkable about her speech to me, though, is the apparent savviness of her tone. She comes across as authoritative yet casually chatty -- much like a clever, popular, connected teen. Perhaps the most obvious element of this mature tone is how she uses the ultimate tool of with it girls everywhere: vocal fry (http://gawker.com/5867222/vocal-fry-is-the-hot-new-linguistic-fad-among-women), see also (http://www.nytimes.com/2012/02/28/science/young-women-often-trendsetters-in-vocal-patterns.html). Vocal fry sounds rather like a crumpling up of the inquisitive at the ends of her sentences. It’s a mini-hipster-rumble that signifies at once being totally in-the-know and a lack of caring too much.

G rumbles when he talks, too. Because he has some low muscle tone, phlegm often catches in his throat when he speaks and he makes a slight gurgling sound behind his words. I call this “gortles,” as in, “Honey, clear your throat – ya got gortles.”

Low muscle tone also results in lax enunciation of many sounds. This, coupled with his unique cadence -- Pardner often notes how G “sounds like John Wayne” – makes G sometimes hard to understand, particularly for other children.

G has been receiving speech therapy through his school since he his IEP (Individualized Education Program) was initiated years ago. His speech therapist initially maintained that G would “never” make much progress in his speech. I have been able, however, using a rewards system that actually matters to him (pokemon cards), to ease him into the habit of pronouncing many sounds correctly and he has become much easier to understand.

Recently, our dear friends Shu Shu Chuck and Fern Ayi (Auntie [in Mandarin] Fern) came to visit us. They brought lovely educational gifts for the kids and spent lots of doting time with them. Fern Ayi, was even kind enough to get up before dawn with them (“Would it be okay with your mom if you got up?” “Yes!!!” [“No.”]) and feed them bottomless bowls of cereal.

At brunch on Sunday, Chuck noted that same John Wayne cadence to G’s speech. I immediately began to explain that we are working on his speech, that he has help at school and so on.

Chuck looked a little sad. “Why?” he asked. “Why try to change what is unique about him?” He said he thinks G is a “wonderful” kid just as he is and decried our culture’s tendency to try to make everyone the same, and to treat difference as if it is a sickness.

I agreed with him wholeheartedly. Without really considering my audience, I had been making my standard excuses, not really lies per se, but statements intended to placate others who may be critical -- when in fact I think G is PERFECT EXACTLY AS HE IS.

Now to give some legitimacy to Chuck’s words: he is none other than Chuck Hoberman (http://www.hoberman.com/home.html), an amazing inventor and brilliant thinker. Among other things, Chuck designs marvelous toys for curious people of all ages. I think his life and oeuvre give great weight to his contention that we should NOT necessarily try to “normalize” our children’s every atypical quality.

Speaking of normalization, if truth be told, I’d like to ease Z’s speech away from the conformi-cool area of the speech spectrum:

The other night, we went to the local café for pizza night with another family. The sweet, smart mother of Z’s good friend brought her two girls - Z’s good friend and friend’s little sister. I brought along G’s best friend too, to be fair. (The injustice of unequal playdates is one felt and expressed powerfully across the FSM household spectrum.) The boys had their own table and the five of us girls sat at another.

I am always a tiny bit wary of consorting with intact (i.e. not gobsmacked by divorce) families who seem like “normal” people with seemingly neurotypical, psychotypical kids. I am well aware that “seem” may well be the operative word in most cases; also, the above describes most of my friends…I am just setting this story up here. Our family is blended in several more ways than average and I hope I may be forgiven a smidge of healthy, wholesome paranoia.

At the boys’ table, G was talking about one of his favorite subjects, marine biology. He kept referring to “aminals” and his friend would get frustrated and correct him. After resisting the urge for some time I finally butted in, letting G’s friend know that I thought saying “aminal” was “pretty darn cute.” He remained unconvinced. “I think it’s annoying,” he informed us. G’s face fell.

Over at the girls’ table, Z was holding up her knife and fork and looking through them to frame my face. Then, still looking at me, she began to move them around in a kind of criss-cross pattern. In her perfect, angelic, singsong voice, she began to sing a perfectly enunciated little tune: “Cut, cut, cut…Cut my mommy’s face.”

The mother, who was seated next to me, leaned in and asked, very quietly, “Does she have violent tendencies?”

At that moment, I wished for Z to be much, much less comprehensible.

Not for the first time, I found myself simultaneously
1. wishing two opposite things for my two dissimilar children: that G’s speech would be more clear and compelling, and that Z’s speech would be less clear and less compelling; and
2. wishing that in each case I wasn’t wishing what I was wishing.

Despite knowing it was a kind of funny situation, and even with all those nice people around me I felt very lonely just then.

Love,
Full Spectrum Mama

Tuesday, March 6, 2012

Pay Attention! To the World!

What are the odds that someone would put on two shirts, one over the other, both inside out and both backwards? Sounds unlikely, no?

Actually, Full Spectrum Mama…what ARE the odds? Harkening back to graduate school statistics, I have in fact calculated the random chances that one would simultaneously wear two shirts inside out and backward (*see below): just over six percent. Yet G seems to wear his shirts this way roughly 60% of the time.

Three seasons of the year here in New England, we layer two shirts for warmth -- but we only wear them once. It occurs to me that the odds might be slightly higher in the case of pajamas: you take ‘em off, they are inside out…You put ‘em back on: inside out. Thus, one ought reasonably to conclude that there might be a higher than six percent chance in the matter of the double-backward-inside-out (DBIO) pajama tops. We wear pajamas for a week, barring mishaps, with double layers on top during the aforementioned three chilly seasons. I have in fact calculated that for each of the week’s seven wearings the daily DBIO odds are as high as 14% (*see below). But I would wager that in the pajama realm we are looking at more like a 90% DBIO scenario.

Figure 1: DBIO Pajama Tops, with faint smile



There might be an element of intentionality to this sartorial situation. G invariably smiles slightly when I bring up how remarkable his shirt-luck is…is it pride that tickles him? Or is he sheepish? Is he a rebel with a cause, albeit an obscure one?

You’ll notice I haven’t even mentioned underwear- or pajama bottom-orientation.

If G cares about something, he WILL change it however he sees fit. However he simply does not agree that shirt-orientation is important. He has a point, I know; even so, I would like to see him express his iconoclasm in a way that won’t make the fourth grade girls tease him.

One of G’s earlier, tentative diagnoses was Attention Deficit Disorder. I knew this was completely wrong: he could focus on something he was fascinated by for hours at a time. His internal capacity to concentrate – often on internal topics – sometimes seemed much higher than average. In fact, he’d be near-unresponsive if absorbed in certain toys or a book. That label was discarded for others, deciding not to label, and so on…Some of you will recognize this cycle…In any case, ADD was not a label that stuck.

Caring about something, paying attention, merits awareness about that thing. Here are some other things G doesn’t care to be all that aware of: prestige, the despotism of custom (http://www.victorianweb.org/philosophy/mill/block.html), the coolness-level or age of playmates, sleeping past 5am, order and cleaning of most sorts, safety. Some of these are great (I am never pressured by him to buy the latest trendy clothes, for instance), and some can be challenging. It’s the latter that presents some tough choices for this Full Spectrum Mama. I just wish I could convey – in a way that really made sense to him – those things that would keep him safe and out of harm’s way. Of course emotional harm is a piece of this, but I would start with fundamental survival tips. I have to find ways to make these external things matter to him somehow.

Lately, sometimes several times a day, I find myself holding G’s precious face tightly in my hands and looking right into his eyes. “Pay attention! To the World!” I say. “Please! Look into my eyes and really hear me: You have to be aware of the world around you.”

I’m one to talk. According to an informal survey of “people who walk with me,” I frequently almost walk out into the street at bad times. I (by choice) didn’t get my drivers’ license until my late thirties  (there was a two-week driving salvo in my early twenties that ended with my vowing never to drive again). Granted I am a native New Yorker but it was more about self-limiting: it struck me as neurologically overwhelming, what with all those Factors (Directions! Other drivers! Turning!)! Driving was neither something I thought I would do well or enjoy, and I didn’t start to try until it became an incontrovertible necessity.

Obviously, I am not the world’s finest safety representative. As well, I never thought I would be a bastion of conformity-recommendation but here I am informing my son, “This is the way people do things” (i.e. wear shirts). On the other hand, daughter Z is all-too-aware of her surroundings and of “normal” ways of doing things. It probably goes without saying that she dons all clothing 100% correctly, 100% of the time.

One notion I had when starting this blog was that a useful parenting idea that holds true for Both of my two disparate children might be a useful parenting idea (not suggestion or rule, just idea!) for ALL parents. The topic of paying attention does not seem to generate any such overarching ideas. Here, I parent a very Full Spectrum-Of-Two. For just one example, take driving: I actually believe Z could be a safe and reliable, if, one might say, potentially “strong on the offense,” driver at age six, while G (and, perhaps, I) would best be served by using public transportation in perpetuity.

Balanced attentiveness to what’s inside and what’s outside is not a given around these parts. Manifestations of focus -- chosen and not-chosen, obsessive or “normal,” healthy and less-so – vary widely in our family.

The ways we (all of us) apportion attention are strikingly different. Children with different attention styles need at times to be parented in different ways. How? Hmm. I do at least maintain that the practice of paying attention to what our children and we ourselves are Paying Attention To is important, especially so when we are not dealing with “neurotypical” or “psychotypical” individuals.

When I am giving some version of a Pay Attention Lecture to G, I become -- on my better days -- aware that Z is listening. She is an excellent listener, regardless of whether she chooses to agree with what she is told. I want to say to her, “NO! Not You! You need to pay LESS attention to the world and more attention to your heart and to let go a bit!”

Luckily, I am able to follow up my Pay Attention lectures to G with Anti-Pay-Attention lectures to Z because G is not listening 93.75% of the time.

Love,
Full Spectrum Mama


* I believe one calculates this as follows: there are four options for each shirt if the dresser is paying ZERO attention:
1. backward, right side out
2. backward, inside out
3. forward, right side out
4. forward, inside out.

Therefore, there is a one-in-four chance of randomly donning a shirt backward and inside out (BIO). So for two shirts, since options are not mutually exclusive (vs flipping a penny, for example), we multiply. The chance, then, of wearing two shirts in this way on a given day (DBIO, again, assuming one pays NO attention to proper shirt wearing) is .25 x .25 or .0625. Just over six percent.

As for the pajama-calculation, I estimated with a higher, set rate of inside-out chancedness. In seven possible dressings, I generously eliminated the right side out option for Four, but retained the backwards/forwards measure for those days, resulting in the following calculation: (.0625 x 3) + (.25 x 3) or .1875 + .75 or .9375 for overall chance of the DBIO Pajama Top. I divided this by 7 to get your average chance on a given day: .13392857 or about a 14% chance. From this we may conclude that for a week, random incidence of DBIO-shirt-wearing would be almost assured (93.75%), and not out of the question on any particular day.

Hi! If you are still reading this you might want to ask yourself some questions. Hey, I’m the one who *wrote* it…Just saying.