Diagnostic Mumbo Jumbo

finnish boys

When something is wrong we want a reason, an explanation, a label, a perpetrator, an enemy with a face and a name so we can lock our sites and obliterate the cause.  We live in a world that believes very firmly in cause and effect and yet we are increasingly confronted with events and conditions that defy or confound every level of diagnoses.  The moment we have grasped the tail of the villain’s cape, he’s dashed into the tunnel of dead ends.

This last year is difficult to explain.  I stopped writing about our journey to unravel ADHD or whatever the hell is going on, because it’s just impossible to square dance when you don’t understand the callers language.  Not being able to focus.  Being extremely active.  Not being able to control behavior.  ADHD or ADD or whatever label you want to give these symptoms feels more like childhood rebellion against our absurd culture than it does an actual biological disorder.

More than 50% of the kids diagnosed with ADHD or ADD “out grow” symptoms.  Is it really a disease or a biological dysfunction if you can outgrow it?  Or are these behaviors a normal reaction by some to an impossibly rigid manner of teaching or learning?  Or is the brain development like other aspects of human development and there is range for processing just like there is for walking or talking?

What if kids who cannot sit still for hours on end are the normal ones?  What if the kids who DO sit still have under active nervous systems?  What if they are being harmed by all this silent conditioning?

Remember when Kindergarten was all about playing and building social skills?  My “ADHD” child spent his 3-4 hour Kindergarten days reciting sight words (drills) and playing “i-ready” games on laptops.  The kids all had stations, academic goals, worksheets and homework.  All flash cardy and pressurized.  It wasn’t any better at the other schools.  They were different flavors of the same thing.  This is where we’ve “evolved” as a culture.

I turned over the ADHD boulder and discovered not only an ant hill of epic proportions but a labyrinth of secret and bewildering lairs.

Despite doing 24 intense weeks of Brain Balance, our son still has some minor “symptoms.”  According to their mysterious primitive reflex testing, he’s hugely improved but still reactive.  Our own observations confirm this.  He’s better but still a pain in the ass, basically.

For example, I chose to leave his iPad behind on our extended vacation so he discovered the magic of fire instead.  He lit every candle he could find, burned a favorite painting and singed a kite.  Even the dog got a fresh coat of wax.  Many people would say this is “normal” boy behavior.  I can see that, too.  However, all of these escapades occurred over a couple of weeks after many attempts at time outs, and removing perceived privileges.  His impulsivity is laced with the persistence of Hades, sadly.

In the warm idyll of summer boredom, he also discovered mommy’s wallet and the freedom of his bike.  After days of finding little candy wrappers laying around the nooks and crannies of our house, we realized that big sister was not the culprit.  One evening after a family dinner out on the town, my husband saw little man grab his bike and hike off into the dusk.  He pounded his peddles down the frontage road and across the highway overpass to a little gas and convenience store.  My husband followed and stood watching him load up his arms with ice cream bars for a minute or so when the clerk came over and said, “He’s been coming in for the past few nights.”  Little man turned shocked and dropped his stash.  Needless to say, bike privileges were revoked for most of the rest of the summer and his steady access to cash was cut off.

Yes, this story fits perfectly in the annals of boyhood adventures.  And curiously, the impulsive traits that contributed to this multiple risk taking boondoggle are the same that will carry him through obstacles that stop most of the rest of us from ever venturing beyond our comfort zones.

When he decides he needs to do or have something, he does not give up.  We like to say that someday this trait will be a strength.  So is he really impulsive or just persistent and determined and therefore oblivious to the collective rules that govern how we move through space we share with others?

As school loomed in our future, I lost some sleep but decided to pull out all the stops.  I hired a local therapist who advocates with schools.  I emailed the school and requested meetings with the teacher.  I printed out informational documents on Dysgraphia to help inform the teachers.  I crossed my fingers and prayed.  

My worst case scenario was (and still is) my little wild man flipping the entire world the bird.  I dabble in rebellious ideas and love to challenge and test conventional wisdom, but at the end of the day, I’m a rule follower.  I have no idea what to do with a child that instinctively tests every single boundary.  And I have to wonder if there is a theme here for all of these kids getting labeled because they can’t or just won’t tow the conventional line.

I am not and never will be a harsh parent.  I am empathetic and reasonable and I trust my children’s feelings.  I cannot argue (much) when they say they hate something.  It’s how they feel.  Who am I to argue with someone’s feelings?  So instead, I try to explain with reason to little brains that aren’t yet reasoning, why things like school are important to their impossibly distant futures.  Meanwhile I know of at least a dozen personal examples of people who have done exceptionally well in life without school.  I try to stuff that knowledge into the dungeon of my consciousness when speaking to my children in case they can see it in my eyes.

About two weeks before school started, my little guy asked me if we could stay on our vacation a little while longer.  He thought he’d be ready for school in another month or so.  I asked him why and he said he just didn’t feel ready.  He said he wanted to see his friends but he was just too nervous.

How had I missed this?  Anxiety was a much bigger force in his struggle than I realized.  I had factored in the primitive reflexes, the gastero-intestinal flora and inflammation, the neuro pathways, the methylation competencies, the physio developmental norms and cognitive maturation.  But anxiety?  I felt like such an idiot.  ALL children want to please and do the right thing generally.  Misbehavior is not a decision to disobey an external authority but to obey an inner need.

I am prone to anxiety.  I only became conscious of it in the last couple of years trying to cope with the great pain and uncertainty of having a child with “unusual learning differences.”  A gifted child (now confirmed by our therapist) who presented like a wild hooligan.  My anxiety manifests in poor sleep and despair.  Thankfully, I have deep reserves of determination and faith to get me through.

I remember hiding behind my mother when she brought me to school.  I rarely spoke.  Until maybe third or fourth grade.  I see this same tendency in my daughter.  My “ADHD” son is an extrovert.  His anxiety manifests differently than it would for me or my daughter.  Instead of withdrawing, he flails and trips and bumps and plows through discomfort, unfazed by the stares and opinion of others.

I began to watch his behaviors with a different perspective.  What if all this movement and agitation is anxiety?  What if his impulsivity is driven by a frantic desire to stop the train, fix himself in space, anchor to something?  It’s not that he wants to shatter the lamp or kick the dog, it’s that he’s flailing and failing to just slow down?

All of the crazy things that happen to him, his bursts of creative destruction, the foul language and blustery ploys to pillage the fridge or someone’s guarded game, could actually derive from a deep place of insecurity and an immature system of filters and brakes.

His therapist sees this anxiety.  Now that I’ve pointed it out.  His teachers see it, too.  We are all now working to support his ease and comfort.  He has a “sensory” box with “emotion people”, little stick figures representing different emotions so that when he’s feeling emotionally constricted and too anxious for words, he can pull one out and help communicate his needs.  It seems babyish for a boy who thinks two years ahead of his age, but it’s helping.  He also has play doh and some soothing blocks to hold.  They help calm his nervous system so he can listen better, probably distracting him from his overall anxiety.

We are heading into week four of school and so far so good.  Each day seems better than the last.  I’m not going to hold my breath but I’m hopeful.  As his anxiety lessens and his comfort rises, he’s calmer. He’s in the highest reading group for his grade.  He loves science and music.  He’s making friends.  He’s having fewer “incidents” with rules and peers.

The school IEP consultant wants every test and report we’ve ever done (that’s dozens over the past 12 months).  I spoke with his pediatrician about the “ADHD.”  She said she can supply the needed documents for the school.  They are very familiar with this process.  It’s about money and resources.  In order for our son to be allowed these unusual aids and accommodations, for whatever reason he needs them, documentation must be provided.

I’m certain all the kids would rather play with play doh and fiddle with fuzz balls than fill out another worksheet.  I wonder if part of the success of these aids for my son is simply having something that makes him feel “special.”  I will be curious to see if these aids become less “useful” to him as he relaxes, feels connected and accepted among his peers.

His teacher, while truly rock star amazing, is learning along with us.  On one side she is being asked to teach her students a very specific and highly structured curriculum.  She runs her class very efficiently while being sensitive to the needs of unusual learners like our son.  So far her desire to help and his desire to comply are in sync.  But it really has taken a small village to get all of us to this point.  Is he going to mature through this “ADHD” and adjust or…(fill in the blank)…

I have dozens of friends who’ve travelled this ADHD road with their kids.  Every single parent said that the “right” teacher can make or break the year for a child.  We have a great teacher this year (thankfully) and all is progressing so well.  But what about next year…

We are in murky waters now.  Is there really an epidemic of kids with neurological challenges or are more kids refusing to comply with a rigid schooling system?  Finland schools start later, end earlier, have no homework and plenty of recess and exercise.  Is it a coincidence that most of Brain Balances’ therapy involves exercise?  Is it a coincidence that rates of homeschooling are increasing steadily?

At our initial IEP meeting, I sat in a room with seven other adults, all professionals who work with children all day long, and not one of us really knows what ADHD is or how best to treat it.  The school asked me what kind of therapies helped our son the best.  I said diet and exercise.  They all nodded.  No one asked about medications.  They know we would like to rule out all alternatives before we consider it.  And given that anxiety often masquerades as ADHD and the two “conditions” call for very different treatment, even in the pharmacological world, doesn’t it seem, oh logical, to wait and see?

And in the back of my mind, that nagging question about whether the problem really lies in our system and values, rattles the cage door.

xo

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