Wednesday, May 23, 2012

Teaching My Son to Ride a Bike

We recently had pizza night with Noodle, her partner and her partner’s children.  The four children are a rare good match: two powerful gals who are willing to share their power for the sake of fun and two gawky boys with no (G) or low (friend) eye-rolling urges. (G’s friend is a lot younger, but G doesn’t give a hoot about age.)

After a brief – but non-cruel – period of incredulity over G’s inability ride a bike, G’s friend – wisely, I thought -- offered him his scooter. Friend rode his bike up and down the street while G attempted to scoot alongside. After trying the bike, very briefly (and, one might say, fruitlessly), G wondered if we might get a “bike like this one” instead of the larger one we have been using to try to teach him how to ride for the last several years. I had that quick sinking feeling of worrying about the cost of a new bike, but answered immediately that we would do so.

The very next day, we were driving along a country road and saw the perfect bike with a “free” sign propped up against it.  We popped that bike in the car faster than you can say “Our motor-challenged boy with aspergers is willing to try to learn to ride a bike and, goldang it, we are going to Do This!”

Pardner pumped up the tires and we were ready to start.

I have been trying to teach G to ride a bike since he was really little for so many social and physiological reasons. Bilateral movement, increased proprioception (a fancy word for self-awareness in space), basic balance-improvement, focus, self-esteem, not getting crap from other kids, and general fitness are just some of the likely benefits. I have been dismally unsuccessful.

When G gets on a bike, he gets distracted. He looks down, losing himself in the turning gears, or the patterns on the road. He leans all his weight on me, making no apparent effort to balance. He is incapable of steering and pedaling at the same time. He forgets to leave his feet on the pedals if I tell him to try his brake. In fact, there are way too many factors to take in when on a bike and – At The Same Time! -- on a street. For many years it seemed like he would never be able to ride a bike. I understand: in an earlier post, I mentioned that I didn’t really learn to drive until my late thirties, largely for similar reasons. Sensory overload and safe, direction-oriented navigation don’t necessarily go together.

Our first try on the new bike: G displayed all of the above while Mama tried to instruct. Not long after starting the lesson, Mama began to lose it. “Keep your eyes on the road. Please keep your eyes on the road. KEEP YOUR EYES ON THE ROAD!” Also, “Feet on the pedals. Please keep your feet on the pedals. FEET ON THE PEDALS!” You get the drift.

“I think this is a good time to stop,” G kept suggesting; but noooooo: Mama pushed on until it became obvious that we were getting nowhere fast.

We veered gracelessly into the driveway. G’s little face was all crumpled up. I asked him why he looked so upset. “You were yelling at me every time I made a mistake!” he wailed, and then began to sob.

My stomach clenched. I tried to explain that I was raising my voice because he wasn’t listening and that I was sorry he felt hurt. And -  “Yes,” I had to finally admit,  “I was frustrated.” It’s just a bike. And yet it isn’t.

All the things that will be harder for him than they are for other people, all the extraordinary safety concerns one has for someone with zero common sense and oft-scattered attention, common and less-common fears...all are triggered in this bicycle-riding cycle.  Plus, there was me sticking my feet under his tires periodically, which was kind of annoying to both of us.

There we stood, both holding on to the offending object, a rusty, dirty, old black bike that still smelled for some reason like manure despite a good rinse. Both shaken.

Z, nimble and chock full of sense, watched us warily. She had been riding behind us on her bike, balancing alternately on each side of her broken training wheels just for the heck of it.  If there is a bike riding spectrum, once again we see a Wide Range in this family. She seemed confused by these clumsy, sappy people.

The good thing was, though, that after a recovery period he got back on that bike. And we are still trying.  It doesn’t seem like a “never” now, it seems like a “someday,” even if that someday is far away. Not only that, I dare say we have begun to have fun in the process!

Plenty of people don’t ride bikes. No biggie. But I very simply and not-so-simply want G to be able to ride a bike if he so chooses.

I would, quite frankly, prefer that he not ride a bike unless absolutely necessary (and only with me around) – much as Pardner feels about me and driving – but I want him to have the option.

Figure I – Rocket Boy

The text on this painting reads, “There was a person who could not walk to school so he invented a rocket and flyed to school.”

G knows that he is different – neurologically, physically – from the kids in his class and beyond. This painting gives me hope that he knows that for all the things he does differently or cannot do, there are things that he can do that are more magical and more wonderful than the ordinary. Even if G never does learn to ride, I know he will find ways to make his journey.

Righteous Love,
Full Spectrum Mama

Monday, May 14, 2012

At Home

I got A Dreaded Call the other day. We all know what those are for our particular family spectra, if sometimes only subconsciously. This was not The Dreaded Call but it was one I have been anticipating with trepidation since Z started kindergarten.

“Z has been taking food from the other children,” her teacher told me. “I have spoken with her and it hasn’t done any good. One time she said she was hungry and the other times she wouldn’t even answer me.”

“Taking.” What a nice word choice compared with “stealing.”

Filled with irrational shame, I mentally enumerated her lunchbox for the day (hard boiled egg, yoghurt, cheese stick, whole grain crackers, baby carrots, applesauce, clementine, small treat – all organic!). I then explained that Z (45 lbs.) gets the same lunch as her brother (95 lbs.) -- and that the hunger is emotional, not physical. I assured her teacher that I would look into solutions.

The next afternoon, Mrs. ___ happily told me that Z had a “good day.” I had given Z extra sweets in her lunchbox as a short-term solution to the “taking” of other kids’ food.  Mrs. ___ admitted that Z had tried to eat the sweets first thing in the morning, but had stopped when told to do so; then she “needed extra time at snack time because she wanted to first arrange the treats in an artistic pattern and then show everyone and then enjoy them very slowly…”

No, that was not a good day.

“Z needs to abide by the same rules as the rest of the class,” I explained. “When you give her special privileges she will feel that she is the one in control and will push – further and further.” This pushing promptly ensued.

In fact, Z’s behavior at school subsequently seemed to explode. I received calls or emails from the school nearly every day. Around the same time that a little girl was handcuffed in Florida  (,0,765665.story) I had to pick Z up in the classroom because she was very upset. I counted myself lucky to have been available. At another pick up, I found her hunched over her Hello Kitty backpack shoveling stolen candy into her mouth with one hand, a handful of crumpled wrappers in the other.  She kicked her best friend and when she finally calmed down announced the whole thing was best friend’s fault for “making me upset” and “making me do it.” She pushed other students, continued to take food, ignored her teacher, lied flagrantly, and so on; she continues to do so.

Another teacher, who has fostered children with attachment disorders, suggested that Z’s behaviors are escalating because she has come to feel comfortable in the classroom. This made sense: at home, she feels most attached to me and therefore needs to constantly test me. Her kindergarten teacher, however, had never dealt with a child with an attachment disorder and was – quite understandably -- bewildered and overwhelmed. I tried to explain some of the underlying factors, but we were and are struggling with how to actually reach Z and create positive change.

Grandmother* (a gerontologist) and Grandfather (an educator, currently teaching fourth grade in a public school in CT) recommended that we consider the possibility that she might need a paraprofessional.

“Ma! Two kids in one tiny elementary school with paras???” I sputtered. “That’s like 12% of the school’s budget! No!”

I imagined myself in a meeting at school wherein this two-for-two issue might arise: assuming the voice of a Borscht Belt comedian from the ‘50s, I’d say, “You think this is bad? You should see us at home!” Ba dum bum!

The truth is, though, that our current educational paradigm holds that public education is for all.  Mainstreaming students with most educational and/or emotional and/or physical special needs is our goal. Ergo: IEPs (Individualized Education Programs; which is what G has) and 504 plans (accommodations, not necessarily special education services; which is what Z may need).  Please see also:

Also true: things are not necessarily harder at home. In G’s case, his schools came to me with concerns over his development and social interactions. Had life consisted of just G and me (or G and me and Timson Hill) I never would have noticed a thing (please see aspergers, genetic links with biological parents…or if there are any websites about people who just want to read all the time with cats on their laps and a nice bowl of pudding).  In Z’s case, struggles at home had always far outweighed those at school.

I envisioned a spectrum in which some people were equally comfortable at home and at school, some were more at ease at school, and some at home. I had come to think of Z as more “at home” at school whereas G seemed more “at home” at home.

Z’s first preschool, which she attended just a few mornings a week, was a sweet, in-home joint, run by a mild, affable woman. Z was – gently but firmly -- asked to leave that preschool for monopolizing all of her teacher’s time and energy.

Her second preschool ( -- may they live long and prosper) was one of the top-rated in the state and a most wonderful and accepting place. G had gone to Timson Hill in his final preschool year, and it was the one place where they never suggested he be evaluated (he had been evaluated by Essential Early Education [“Triple E”] services at his previous preschool, before we moved, and was subsequently evaluated in kindergarten).  G was relatively at ease in that utopian environment – and unconditionally loved. Likewise, the teachers at Timson Hill accepted his sister Z wholeheartedly and – I might add – effectively, as her behaviors improved in that context.

Sure, there were the several times I had to go get Z when she was “possibly catatonic” or “might be having a seizure of some sort” because she wouldn’t respond or speak to her teachers but once we were in the car she’d revive. Using her own words for what she was doing, I would ask, ”Were you just tricking your teachers?”  [Giggles…] “Yes.”

But they never minded! They were just glad to know she was okay! And, day-to-day, they celebrated her for Expressing Herself and Exploring her Power, just as they had celebrated G’s various quirks and peccadilloes as originality, pensiveness, brilliance…

Ah, would that the whole world were made of Timson Hill.

On the first day of kindergarten, Z -- alongside her big brother -- proudly walked into the school she’d been anticipating attending for years. Her pink Hello Kitty backpack was almost bigger than she was.  It was an exciting and happy event.

                                               Figure I – Backpack to Child Ratio: 4:5

 There were other idyllic moments, like when Pardner and I both elected to serve as “Mystery Readers” in the classroom. I bawled uncontrollably (though [I hope] subtly) throughout those simple and unspoiled occasions.  I had so much hope that Z would be able to self-regulate in positive ways at school.

Still, fairly early on, Z’s teacher had to move her cubby to a more visible place because of some sneaking behaviors. And she was having some dominance and conflict-resolution challenges too. Then again, Z could certainly be relied upon to “run circle time” if Mrs. ___ had a small group activity to attend to.  Overall, kindergarten seemed to be going relatively well.

One morning in November, after some small incident, we stopped to greet the principal at the front door. “Z is planning to be very well-behaved today,” I announced. Z’s face got flat and stormy. “Hey,” I told her as we walked into school, noticing her expression, “You need to behave – and we are all here to help you.”

On the way back out, I stopped again and said to the principal, “I hope that was okay…I just want to help Z do her best and her knowing that everybody is in on that seems like a good idea to me.”

“Oh, I wouldn’t worry too much,” he assured me. “She’s only been down in to see me a couple of times.”

Um. A couple of times? It was November. And she’s in KINDERGARTEN??? G has been to the principal’s office once in five years; I’d been once: in fifth grade, for kicking Jamie Chickaverry in the braces. (I’d been aiming lower.)

After a weekend from h-e-double-toothpicks, and the above-mentioned calls and concerns from Z’s teacher, I scheduled an emergency phone appointment with the attachment disorder therapist. While I was on the phone, Pardner ran into the woman who had referred us to that therapist in the first place in town. She has a son about Z’s age who was also adopted and has similar issues with anger, among other things. “How’s it going?” she asked Pard. He told her a little about recent events.

She got it. Wasn’t any kind of, “Oh that’s ‘normal’’’ – she got the whole threatening-to-kill-Mama (and everyone else), house-destroying aspect of the situation. Apparently, her son calls her a “F-ing B___” On the regular. Sigh. My people.

Pardner said she then uttered the words, “support group.”

“I don’t really think FSM is the type for that…” Pardner ventured.

“Yeah,” she said, “I wasn’t either. It’s just that you get nuggets of information. AND you meet people who get it.”

This is why sometimes I cannot talk to people: I mentioned a bit about some current behaviors to someone. “Mavbe Z was having a rough day at school,” this innocent person suggested.

No, innocent person, Z was not “having a rough day at school.” Z was possessed. By the exorcist? Or – I mean – she was possessed by whatever the girl in that movie is possessed by – that’s my daughter when she’s mad? Which is a lot of the time? The clinical term is “shame rages”?

So…About that support group?

Our therapist differentiated for us between shame and guilt. Guilt is a pro-social emotion, which makes learning and progress possible. When children feel guilt, they naturally want to do better. In time more pro-social behavior becomes ingrained. Shame is a dead end, and children with that feeling see themselves as helpless and hopeless. They have, therefore, nothing to lose. Shame is an anti-social emotion.

When Z clams up and refuses to respond to teachers and family it is with shame. Her “shame rages” are the tantrums of someone who believes all is already lost, which is the main reason they are so extreme.

Our therapist said one of the most important gifts one can give a child with an attachment disorder is to create the chance to “do a repair.” A repair can make a child feel more safe, more at home, wherever he or she is. It is not too much of a stretch to hope that a child who feels at home (whether in a place or a relationship) would lose the need to attempt to destroy their surroundings or companions.

When one has been dealing with relentless testing and pushing and tantrums all day where does that energy – the energy to not only come up with an idea for a repair but to then carry through -- come from?  What if the one who might be able to “do a repair” is a teacher with twenty other students to worry about?

Better go get some chocolate. It’s for the sake of my child.

Full Spectrum Mama

* I should note this is the same Grandmother who – despite being Liberal and by and large Left-leaning -- is convinced that Z must be descended from royalty due to her great beauty, intelligence and imperiousness.

Tuesday, May 8, 2012


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 -  -- 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