May I just say…

…that I am NOT looking to “cure” my son’s autism?

If everybody in the world were more like him, the world would be a much better place.*

That is all.

* Albeit messier.

Ignorance Ahoy

In this time of pain and grief and uncertainty I'd like to say, Thanks, local paper, for perpetuating rampant stupidity:

Re: "Windham County schools helping students cope," by Howard Weiss-Tisman, 12/18/12

To the Editor,

As friends, parents of and/or persons with autism spectrum diagnoses, we would like to clarify some important and potentially damaging aspects of Weiss-Tisman's article. 

He wrote,  "...the alleged killer, had Asberger's [sic] syndrome or some other personality disorder, it was important not to draw conclusions, or make assumptions abut [sic] other children who suffer from mental illness."  (http://www.reformer.com/localnews/ci_22212875/local-educators-respond-conn-killings)

Aspergers syndrome, following the publication of DSM5a to be known as an autism spectrum disorder, is definitively neither a Personality Disorder nor a type of mental illness. 

Persons with autism are in no way more inclined to violence than the average population; in many cases and in our own experience they are among the most gentle and emotionally empathetic people we know. In fact, persons with autism are significantly more likely to be Victims of violence than to commit it.
We support The Reformer's and all efforts to increase school safety. Our thoughts are with those who were impacted by Friday's terrible events. Let us be sure not to add tragedy to tragedy by perpetuating negative stereotypes around mental illness or autism. 

We ask that you publish this letter so that people in our community will not be misled into harmful and erroneous ideas about autism.

Sincerely,

[FSM, friends, family]

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

Tripping

We visited Great Gram in North Carolina for school vacation week. Although my beloved Gram looks to me like the most beautiful person on earth, the children were naturally wary of the old, bony lady lying in a “rest home” bed. G had grown up knowing her well, but in more vital times; she’d been declining since Z’s arrival home. After adjourning to the hallway for a wee chat – to wit, FSM hissing, “I know she looks a bit scary but she is your ancestor and neither of you would be here if not for her and she loves you even if she doesn’t always know who you and this will probably be the last time you see her so get in there and give her a hug!” – a decent amount of sugar ensued, after which we set out to explore the area.

Traveling with G and Z seems to exaggerate some of their atypical ways of coping, simultaneously highlighting their anxieties and differences while drawing out their remarkable dual propensities for joy. I kept noticing how -- despite Pardner’s and my sometimes near-constant admonitions (to “not hug strangers,” to “not take your clothes off here,” to “listen and allow the tour guide to speak…” (at the International Civil Rights Center & Museum - http://www.sitinmovement.org/)  -- both children possess a huge capacity for laughter and making things fun. 

Of course, being my Full Spectrum babies, they express this in their own special ways. In an unfamiliar environment, G copes with total pokemon immersion, embodying different personae for each situation.  Self-regulation in terms of appetite, sleep and so forth go out the window, and parental regulation becomes more crucial. He rises above largely by crafting pokemon-based jokes at every turn.

Z copes via incessant planning, especially of destinations and menus, as well as by recruiting any likely candidates (candidate pool: anyone who thinks little girls are cute) for unbridled, extensive conversation and free samples. Regulation of environments – social, internal, spatial – becomes paramount. She lightens up, though, with abandon -- and a scurvy belly chuckle for her brother’s every pokemon joke. 

This tendency toward enjoyment – heck, let’s call it Play -- was delightful to see. It functioned, too, as a counterbalance for my realization that my children have a great deal to learn if they are ever to function well outside of their comfort zones.

In our Full Spectrum, strengths and weaknesses are integrally connected. Case in point: We are driving around and realize we have gone the wrong way. Pardner announces that he will have to make a U-turn. Z announces, in her inimitably regal way,  “I don’t want to make a U-turn. I want to take a ME turn.” We – all of us -- laughed about this for the rest of the trip, even though the fact that it was actually true for Z was mildly disconcerting.

Now that both children are in school, spending twenty-four hours a day together was freshly grueling and amazing. Each late night would find Full Spectrum Mama and Pardner lying on the bed staring vacantly at the Holiday Inn television with mouths agape, shell-shocked, knowing full well that G and Z would start their preliminary grunting and fidgeting around at five in the morning…yet nonetheless unable to sleep.

This experience has confirmed my long-standing hunch that traveling with kids should henceforward be referred to not as vacation, per se, but as “tripping.”

The day we got home, I was thrilled to see an article in the local paper about a child in a neighboring town with autism who was graduating from high school and exploring his next steps. I expected to learn about resources in our community and people with whom I might connect. I began to feel sick to my stomach as some of the language in the piece sank in: “trying to determine what was wrong with her son” was the phrase I still cannot shake.

Language around disability is so loaded. Labeling and differentiating language may be useful in accessing services and, in some contexts, increasing understanding. But great care must be used. Although all those involved in the article must have meant well, I remain disappointed by the overall implication that there is something about people with autism that needs to be “fixed.” Such language might fittingly be used in some cases of attachment disorder, an often dis-abling condition that results from difficult circumstances and which may, with luck, ultimately be healed. Autism, in contrast, involves – among other things -- different ways of perceiving, processing and interacting with the world. These modes may well be held as equally valid to those of neurotypical individuals.

Maybe this is not the current mainstream, on-the-streets perspective? After all, there is a vast spectrum of variety in perceiver and perceived...especially with children who are remarkably hard to miss. 

Two new spectra coalesced from watching G and Z interact with strangers during our trip.  For G, a spectrum of tolerance emerged; for Z, one of engagement.

Figure I – Reaction Spectrum: Tolerance                    Figure II – Reaction Spectrum: Engagement

Adults tend to be engaged and/or charmed by Z. It can take quite some time before they realize – if they ever do – that they have been embroiled in a long, in-depth discourse with someone barely three feet tall and six (“six and a half, Mama!”) years old. This stage we will refer to as “disbelief.” Her relentlessness sporadically results in annoyance and more or less successful attempts at extrication. More frequently she is adored, even worshipped, for the tiny deity that she is. Obeisances are offered and accepted. Thanks will be proffered by Herself…if prompted.

The attachment disorder specialist with whom we are working recently told me that it is “harder for the really charming children to get the help they need because they get away with so much.” Z presents a scintillating exterior that diverts her adoring audiences’ gaze from her inner pain and her external transgressions. With inner healing, perhaps her dazzling shine will become more of a comfortable glow. 

The general adult-stranger reaction to my aspergian son seems to be one of tolerance. More negative reactions to his sometimes over-friendly or otherwise inappropriate behaviors include confusion and even anger. On the other hand, a decent proportion of people will go slightly out of their way to accommodate him – and a select few seem to truly appreciate his openheartedness and originality. There are even those who seem to celebrate his free spirit and flailing body.

The spectrum of stances taken by his fellow children, they of lesser patience and knowledge, veers slightly more toward perplexity and annoyance. With both adults and children, however, I get a lot of questioning glances, raised eyebrows and rolled eyes. I try to deflect such unspoken queries both because (this is one of many things I have learned about myself in parenting a child with autism) most direct eye contact makes me uncomfortable and because I demand that G be accepted on his own terms.

After one particularly stressful day in North Carolina, Pardner wondered whether “everybody has to, in some sense accommodate G.”

I disagreed: “I think the people who get G really get him!  If everybody were like G, the world would be a much better place. But,” I conceded, “much, much messier.”

I suppose I fit into the celebratory faction. Unlike the mother quoted above, I have never thought for a millisecond that there was anything “wrong” with my son. Calling someone “differently-abled” may be a cliché, but it is also deep truth.  The gifts of truth and heart and generosity that come with G could never be compensated for by “normality.”

One of Rudolph Steiner’s first students was a boy with autism. Steiner came to believe that people with autism were partly still in the angelic realm. That is, their engagement with the mundane world was limited because of an ongoing partial immersion in another dimension, one closer to source/truth. Thus the calculations and deceptions of ordinary people are alien to those with autism.

Steiner remains a controversial figure. I both agree and disagree with Steiner’s stance on autism: for one thing, the word “angel” can be a polarizing one; for another, people with autism are as varied as those without it…Yet there is something to be said for such a positive view of this “disability.” Stay tuned: perhaps another spectrum or two is called for.

Whatever their religious, philosophical or personal status, those people who wholeheartedly accept all children are angels to us. Neutrality is fine too, though surprisingly rare.

Love – and never colluding with the eye rollers,

Full Spectrum Mama

Tools

…In which I expound, dear readers, upon a small spectrum of handy-to-la famiglia FSM tools that might be useful and/or laughable in your rainbows.

The “My Bad”

We all aspire to the wielding of copious quantities of positive tools like respect, patience, unconditional love and consistency.

My favorite progressive tool, though, is more negative.

My mother’s generation – whether traditional or hippie-mama – often felt pressure to act as if mothering felt happy and easy at all times, as if motherhood was totally fulfilling and came naturally to all mothers. Parents, especially fathers, were deemed omnipotent and all-knowing.

As our culture has become – however incrementally – more open and less sexist, we have gained some additional tools at our disposal. We are now free to admit to each other that parenting is sometimes hard, and often baffling, and that – even as we fiercely, fully love them Every Second -- we sometimes don’t entirely like our kids at a given moment.

It may be even more important that we are able to admit to our children (friends, family, partners…) that we ourselves are human. So, I celebrate the following three phrases:

“I don’t know.”
“I messed up.”
“I ‘m sorry.”

The use of these phrases demonstrates that parents (friends, family, partners…) are fallible human beings who will try to figure stuff out and do better next time. Just like kids can be – if shown the possibility.

The “My Bad” is liberating, but by no means a license to ill. At its best, though, it offers possibilities of redemption, learning, healing.

The “Locked” Door

Among other things, Z’s agenda includes using the stovetop and oven at 2am. Because of this, I have had to confine her to her room until I officially get her up in the morning. This involves keeping a chamber pot in her room and my “locking”[closing] the door every night after I put her to bed. Somewhat paradoxically for Miss Independence – but well within guidelines set by the aforementioned therapist -- this has been a very comforting process for Z herself.

The first (initially) unknown-to-me reader of FSM -- and someone I think of as a real live guardian angel -- has degrees in Education of Young Children, Child Assessment and Development, and Psychiatric Social Work (with specialty in the field of children and families).  She also has decades of experience working with children. She keeps me on track and within the bounds of my knowledge while still tolerating, even celebrating, my flights of fancy. Any errors, of course, are all mine.

She recently asked me,  “How do you as a mother create a safe home for Z while still feeling your home is as you want it to be?” My answer was…I don’t. I used to wear a lot of jewelry, for example, until some of my most precious pieces disappeared. Some did reappear, only in different and unsalvageable forms.  Now my jewelry is so hidden away that just getting to it is way too much trouble for a busy mama.

Some other nighttime concerns, besides stove on-house fire-gas explosion and jewelry-ruined-gone include:

food-hoarded-infestations-grody stuff-smears-rot-botulism

lotions/creams/polishes-ingested-poisoning thereby

pets-tied up-enslaved

Z has her own jewelry and creams and an array of dolls and stuffies, but they are never quite enough. Her night machinations made this very clear. Admittedly, with her high level of competence we might teach her how to use the stove, etc. in the not-so-distant future.  Until then, we say that Z “isn’t ready to get up on her own.” We try to meet her where she is on the developmental spectrum, protecting and nurturing the baby inside, while allowing for her exceptionally high acumen on mental and physical spectra by essentially baby-proofing the house for a really, really advanced baby.

Oppressing Z was a concern, but her “locked” door liberated her from her compulsion to do verboten “projects” in the night and allowed her to sleep soundly, thereby enabling her to not only feel better but to feel better about herself.

Humor

Also from my children’s therapist-angel reader came the suggestion to use humor. She reasoned that with all the progress Z had been making I might begin to use wit in our interactions. Instead of sticking firm and strong to my “put the dish in the sink” order, for instance, I might -- according to therapist-angel -- say, ”Put the dish on the floor.” Essentially, I should continue to contain Z's actions -- but with a light touch.

Yeah, I am not ready for that yet. The therapist Pardner and I go to who specializes in attachment disorders suggested the same thing. He thought, for example, that when Z looks at one of her adoring aunties and haughtily points to her plate to indicate that more food must be provided I should say “Oh…is that a plate?” I told him,  “Please. Just tell me one thing to say for all situations. Funny is too confusing. In those moments I can’t remember more than that.” Someday I do very much want to be funny. For now, I aim for functional.

Ripping Bag

Z likes to rip. She likes to rip Everything. She rips paper into tiny strips, all of a size. She rips clothing -- seam from seam, or expanding upon a pinhole or snag.  She rips horns off beloved childhood unicorns saved especially for my some-day daughter. (I’m not bitter about that one.)

One day, after yet another ripping disastrophe, it occurred to me to fill a bag with stuff that Z not only could but Should rip. It was a great success and has substantially reduced free-form ripping.

Feel free to riff on this: what about a smashing bag? A coloring-on box? A food-hoarding bunker?

One Battle a Day

G has the typical aspergian penchant for obsession. Pokemon has been a focus for almost six years.  In order to make time for other activities and foci, such as eating and sleeping, we have devised a system in which we have one extended, all-out Pokemon battle a day, after which we have some time for discussion. A potential additional benefit to this system is that G begins to get the notion that other people have interests of their own.

When he raises the subject I can say, “Is this Pokemon time? Oh, you want to talk about Gyarados’s hit points? Good. We’ll talk about that during Pokemon time.” Ideally in this context, I don’t squish G’s interests, just corral them.

One battle a day is enough for anybody.

You flick, I tick

From time to time, G begins to develop a tick. The latest has been a sort of flicking of his fingers that seems to happen when he gets excited or anxious. Hoping to help him (and not his neurological hiccups) be the one in charge of his body I started a policy of “you flick, I tick[le].” That is, whenever he starts flicking his fingers, I tickle him. 

It is probably somewhat annoying, although he tolerates me.

“You flick, I tick” is also related to my “you flap, I clap” policy, for when G starts flapping his hands compulsively. These are intended as neither punitive nor judgmental; they should be merely observational. And, as I tell him, hey, if you love to flap, just keep on flapping…and I will keep on clapping. I like to clap -- and I love to tickle.

Tickling seems to be a good tool, also, when either child gets Stuck in a mood or thought process. Of course, this assumes a certain base level of receptivity to being tickled at a given moment.

Wouldn’t it be nice if we could tickle ourselves out of being stuck?

 

And, finally…

The “Mombulance” (also available in “Dad” and “Person” models)

“Wheee-oooh, Whee-oooh…” You hear the siren in the distance. It approaches…closer and closer. To your surprise, it pulls up outside of your door! You venture onto your stoop. A hunky paramedic steps out (gender – up to you).

“Ma’am,” s/he orders, “Step away from the residence. Put down the crayon, computer, dishcloth, phone and banana peel.”

Several other paramedics roll a stretcher toward you. As you climb onto it you note that a nanny and several fun, inclusive kids are headed toward your house, loaded with healthy, delicious snacks, games and educational yet entertaining dvds.  You see a special caddy full of trashy magazines affixed to the side of the stretcher. You wave sweetly to your children, who don’t even notice you are leaving. As you are rolled into the ambulance you see that you are surrounded by clean, uncluttered, chic-yet-soothing décor.

Hunky Paramedic hands you a beverage, informs you that en-route massage is available by request, and closes the back doors of the Mombulance.

You are All. Alone. Ahhh.

Ok, I made that one up.

If anyone has suggestions about moderating random sounds that seem to sound good to G Inside his head but sound really bad to those Outside his head and/or on curbing jewelry appropriation and repurposing please to inform.

Love,

Full Spectrum Mama

Being True

G loves “aminals.” He also has some balance and large-motor impairments that we are tackling from various angles. Therapeutic riding seemed a good way to combine these factors. At the Southern Vermont Therapeutic Riding Institute (http://www.winchesterstables.com/therapeutic.html), Lorna Young and other amazing people (staff and volunteers) work with children and horses to the joy and benefit of all involved.

One time, we were milling about waiting for G’s lesson to begin and we saw the cutest jolie-laide shaggy old donkey kinda loitering a few feet away, all “Just hangin’ out. Nothin’ goin’ on here, folks.”

G and Z were entranced by the motley creature and asked Lorna about it. “That’s Frances,’ she informed them. She pointed to one of the stable hands, who was sweeping the floor a few yards away. “That’s his mother over there.”

G looked over at the woman, and then at the nonchalant donkey.

“I will take that as a joke,” said my boy, with a totally straight face.

Being literal, G often thinks people are lying when the “liar” in question might feel he or she is doing nothing of the sort.  He will say, “___ lied to me today. He said he would play with me at recess and then he played basketball instead.” It is so hard for him to be flexible and see incidents like this as change rather than betrayal. Having, also, an encyclopedic memory, he notes inconsistencies and reads them as untruths as well.  Therefore, among other things, he finds it profoundly disjunctive when people act differently in different situations, and with -- or toward -- different people. Your dork-kid who rejects his dork friends when the in-crowd comes around, your customer who is polite in a fancy restaurant and rude to a cashier at the 7-11, your parent who tells a child s/he is eating “nothing” when s/he has just shoved a piece of candy in her/his mouth…these “normal” people are disturbing to G.

I rather know where he gets all of this –the literality, the trash-can memory, the perceptions of dishonesty. As an adult, though, I am able to choose to associate mostly with people who present fewer such conundra. G doesn’t yet have that discernment – or that luxury.  He gets confused, hurt and angry in commonplace contexts.

Nonetheless I will never advise him to be untrue to himself. I’ve never forgotten learning the literal definition of integrity in graduate school: it comes from a coin that is, on the inside, what it purports to be on the outside. G’s inside is pure gold, but that integral and external softness is going to get him a bit scuffed.

So I’m going to suggest to him that the next time someone “lies” to him he might tell himself, “I will take that as a joke.” The next time he asks Z to play and she says, “Ask me again later and I will say yes,” and, later, she doesn’t [whole ‘nother post]: ”I will take that as a joke.” When someone utters a small white lie that to him feels like a violation: “I will take that as a joke.”

Perhaps that’s not such a bad idea for all of us. 

Love,

Full Spectrum Mama

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

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