On Community

insomnia

The chirr of crickets drifted in the window above me and reached through the dark for my ears.  The pillow case scratched against my cheek, cheap and rough, and I lay eyes drinking in the darkness and waiting for sleep.  My mind wandered through the solitude and I thought of the crickets; crickets who stringed their tune in loneliness–calling out–until their trilling hums united in a wondrous symphony that painted the soundscape of late summer’s night.

My thoughts hummed in solitude like the lonely song of the cricket, and I imagined the thoughts of those lying eyes wide and sleep eluding painting the mind-scape of the night.  All people’s reflections so very different–thoughts of longing, of love, of loss, of guilt, happiness, hope, of joy and sorrow–thought in the shadow of lonesomeness.

Only the most precious, complex, and perhaps dangerous rumination are capable of robbing one of sleep; and we, the parents of the rare and extraordinary, are faced with such pondering often.  Life for us is inherently isolating and lonely; it is lived at an incredible pace; the trumps and struggles are of such a magnitude that it bleeds into the solitary hours of the night.

Rumination like a cat burglar snuck up on me, the unsuspecting victim, and stole sleep only to leave a pervasive state of underling fear and uncertainty.  I was feeling especially lonesome and unsteady as of late.  Both a cherished friend and some close family moved many states away, we made big decisions–such as the one to place one of our children in a self contained classroom–a change in school for both kids, and new diagnoses and ever shifting medical concerns for the children weighed heavy and left us more isolated than usual.

Over the years, Tuberous Sclerosis Complex (TSC) and the other exceptionalities of my children have laid waste to my career outside the home, many friendships, our hopes for a bigger home, and more.  When the kids were young, it was easier to still enjoy some of the same pleasures as parents of healthy, neurotypical children–playgroups and jaunts to the park–but as the years passed and she has remained frozen in time and development we are no longer able to assimilate in that which is built around the typical family as easily.  Our life became more and more extreme–outbursts, prolonged hospital stays, severe financial strain of raising children with exceptional needs; and, the stress increased exponentially.  As the stress increased, our ability to attend social events and lead outgoing, independent social lives outside our family became less and less–forget trying to find a babysitter!  Our days were spent at therapy appointments and ABA, we missed birthdays and barbecues, let down friends and family over and over again.  Some friends fell away, we were blessed to find some new, yet our world seemingly became smaller and smaller, lonelier and lonelier.  I became like the solemn cricket singing out to the night sky in search of another of my kind.

It was easy in the dark hours of the night as the warm September breeze blew out the summer and in the fall and the air settled like a heavy sadness to mourn it all in solemnity.  There was truth to all of this and truth is never a singularity.  For all that TSC and the extraordinary vulnerabilities of my children have taken, for all the isolation, I have also been bestowed many gifts.  I was reminded of this as I listened to the symphonic harmony of the crickets; we have been gifted a camaraderie and community (among other things).

TSC Wave
Power of a wave

Like the very image of waves driven in ink deep into the layers of my skin that connects me to the other parents of children with TSC who bare the same marking, though our stories may be very different, we gain strength from our connection and unity in our rarity.  My thoughts shifted from my deep seclusion and the wreckage of the day–another school disaster, another betrayal by a person entrusted to service our child, and the havoc that rolled down the line–to the village of people who swooped in to help.  There are times when I am buried so deep in the difficulties of our life that I fail to hear the chorus around me.

In one day we had a caring new friend, who knows very little about our sweet children but has been open and accepting of us, alert us to the school issue, my darling best friend–my person–support us with calls and emails and legal research from her hurricane ravaged neighborhood many states away, and another dear person offer to make the cupcakes that I just won’t be able to make for our son’s birthday on Saturday.

I am not alone.  We are not alone; and we are alone.  That is the crux of life.  We are all simultaneously alone in our plight and surrounded by humanity.  We are the solitary cricket chirring a call to his fellow cricket yet surrounded by the deafening cacophony of chirping in the dark summer’s night–alone and together.

I settled in with a new recognition and appreciation for the deep and spreading roots of community we truly have; and, with an understanding that when I feel isolated, misunderstood, and alone in this rare and exceptional life that all I need to do is call on those connections.  That I have people willing and able to rise to the occasion.  And also, that call need not be literal or external; it can also be an internal grounding in the roots of community and the love that surrounds our family.  Because, there are many times when I will still very much be alone in this and that is ok–alone and together.

We are all so much more alike than different.  We are all so much more valued and loved than we will ever know.  We can all call on that in the darkest hours of the night–when the crickets hum, thoughts race, and sleep eludes.  Rest peacefully in the chorus of community.

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On Systems

gears
Systems

Sun caught my glasses and reflected brightly, the glint snapped me from my momentary space-out.  I was firmly back in the stale conference room, at the crowded table, sat in a chair feeling oh-so-small in my decently large body surrounded by administrators delivering the unpleasantries that had broken my trust once again.  The daydream of whirring cogs brought on by the janitor and his humming waxer outside the room seemed preferable.  I imagined myself getting caught in the spinning gears, limbs haphazard and jammed in the machine, everything halting to a complete stop.  The daydream metaphor seemed apropos.

I was here before, I am here often, and I, sadly, would be here many times again.  Here being the place where I must trust a system with that most precious to me.  All families of the extraordinary and rare are forced into such systems.  In fact, my family, like all those other families, has been reduced to a cog–a component–in the machinery; we are confined and operating within several simultaneously running systems.  We are at the mercy of these systems because they are an essential to our children’s survival; trust in them has become a necessity rather than a treasured prize that is earned.

I attempted to tune back into the school administrator’s voice despite my crushing disappointment and rising anger–a mother’s strong defensive reflex for her child is a near impossible thing to suppress.  It is a craft that has taken me years to master.  When my girl was young my anger at the systems we had been thrown into–insurance, medical, early intervention, state agencies, etc.–boiled over, and I would rage against the machine.  Gears and cogs would grind to a halt and all the wrong doing on the part of the system would be placed upon me and my anger.  Trust was an impossibility; I knew trust as something earned for reliability, truth, strength, mutual respect, and none of this was present within these systems.  Within these systems was a huge differential of power, obfuscation and irresponsible practices, at times, and, at others, there could be beneficial assistance–nothing was reliable.

Back at the table, my reaction must remain suppressed; there was no room for the natural, the primal, the emotional, in a machine, and that was in what we were working.  I remained stoic and betrayed no hint of disapproval in the system; special needs families must be like Tin Men soldiers, no hearts, and no tears to rust their working parts.

A thrum from above announced the impending rush of cool air from the vent; it reminded me to remain cool.  Only those with the power are allowed to openly express the emotion involved when the system chafes them.  There are rules and we had to work within the rules provided; and I had to trust, once again, that the rules would be followed, even though the very meeting we were having was about the people who hold power over me and my children, who are entrusted to provide my children with the services they need to thrive, their failure to adhere to those rules.

The administrator let out a long moaning sigh that sounded like the whine of a broken machine.  Her face looked tired and I read a hint of defeat in her expression.  Perhaps the whirring of the cogs was maddening to her as well.  I imagined Mitt Romney and his ridiculous, “Corporations are people, my friend,” comment; this administrator was a person stuck inside the enormous machine they call the American Public Schools.

“The Public School System is a person, my friend,” no more than is a corporation; but the people within each are.  And, as her monologue was interrupted by the shrill sound of the bell system, still set though it was the last waning days of summer recess, I thought there was no possible way that this woman entered into this system to deprive my daughter of the resources necessary for her to succeed.  I had to trust, because that is where trust is built, person to person, within a relationship; and I opened back up to what she was saying and settled the rising tide of reflexive mother’s anger.

I’ve begun to learn this lesson ever so slowly: place trust in the people within the organizations worthy of it and never expect that the system itself will be trustworthy.  Trust enough in the people within the systems for their expertise to lift your burden and help, but never so much to let it override you self assuredness, gut instinct, empowerment, and advocacy for your children.  Remember that people enter into these helping profession systems because they want to help people and they are just as stuck in the machinery as the families who are trying to utilize the services.

The school had let my daughter down again and, by proxy, me; this was not the first time and it would not be the last time that my trust was shaken.  I pushed my feet hard into the floor and grounded myself when the administrator ended speaking and I began from a place of guarded trust that she within this particular broken system would do her best to right the wrong.  I clearly and calmly addressed step by step what we would accept to correct the wrong and left; that’s the only way I have found to break us free from the insidious grip of the multiple systems wrapped so tightly around us for such a great majority of our family’s life.  I walked out into the sunshine, collected my children, and we enjoyed our day outside the whirring of gears and with in the fantasy of play at the park.

On Private versus Secret

On Private versus Secret

StreamWords, to me, are like water; they are life-giving and essential.  I drink them in deep to make sense of the world with in me and around me.  Gentle like the trickle of a playful stream and powerful like the torrent of crashing waves in a violent storm through rain, snow or ice, water like words hold magic in the ability to take many forms.  Words matter and defining and clarifying why within our great lexicon is especially important when raising children with special needs.

One of my greatest personal griefs as a mother is the loss of connection with my daughter over my love of words.  Language for her is foreign.  The nuances of language are dull and imperceptible; it is like trying to discern stars in the orange-brown of the light polluted sky—it all becomes muddy.  To me words are sharp and precise with a woven tapestry that is like a picturesque view of the Milky Way through the most detailed of telescopes.  Nevertheless, words matter and there are certain lessons nuances that must be not only be taught explicitly through definition but also breathed into life and experience for her and all our benefit over and over again.

There is a difference between secret and private.  

Definition secret

se·cret ˈsēkrit/ adjective 1. not known or seen or not meant to be known or seen by others. noun: 1. something that is kept or meant to be kept unknown or unseen by others.Source

Definition of private

pri·vate ˈprīvit/ adjective 1. belonging to or for the use of one particular person or group of people only. (of a situation, activity, or gathering) affecting or involving only a particular person or group of people. (of thoughts and feelings) not to be shared with or revealed to others. (of a person) not choosing to share thoughts and feelings with others.Source

Foundationally and fundamentally this distinction must be infused in the fabric not only of our lexicon but of our lives; it is important for everyone and it is exquisitely so for us.  The difference is far reaching with impact both practical and abstract.

By definition, a secret is never meant to be shared with others; it is the burden of one or a very selective few to carry. Whereas, private is something belonging to someone or a group that is chosen not to be shared with others.

Even for a wordsmith, this nuance can entangle. Here is why it matters: our struggles are not a secret; they are private and that means we choose who, when, where, and how we share them because they are shareable–meant to be seen and carried by others.  Secrets are the breeding ground of shame and the enemy of vulnerability.  Queue the Queen, Brené Brown.

Special needs, mental illness, significant sickness and the like have been relegated to the dark shadows of society–institutions, the homeless we walk by trying not to make eye contact, religious charities, etc.  If one had a family member with epilepsy, autism, intellectual disability, rare disease, then it was not meant to be known; it was a secret and with that secret carried great shame.

We have made great progress in the past hundred years in our society and we are still living in a society that treats disability as if it is a secret.  We speak of disability in ablest terms: overcoming, beating, fighting, etc.  It is as though we are constantly expecting those living with disability and their able bodied family to beat back that which is integrally a part of them and the fabric of their lives, of their family dynamic, into the shadow; to make it secret again.

Our struggles are not secret they are private.  They belong to us and we choose who we honor with their sharing.  We do so in a safe and planned manner that shares what we want when we want.  In doing so I commit to sharing what is mine.  That means I share my experience as a mother of children with Tuberous Sclerosis Complex (TSC), autism, epilepsy, cortical visual impairment, dyslexia, AHDH, and more.  It means when I give pieces of my children away to others I ask myself first would I want this told about me; I ask this not because there is something to be ashamed of but because I respect their privacy and their choices.  And, in asking myself these questions I am teaching them the meaning of privacy.

We must speak this to life; if we do not then it becomes secret.  For a child whose neurology does not afford them the regulation to keep their experiences internal in public (read: meltdowns), it is vital to empower them with the understanding, empathy, and deep compassion that it is okay, more than okay, to be seen during struggle.  We all struggle and that it is not secret.  Their struggles, just because they may be more intense, loud, violent, scary, public, are not secret or more shameful than others.  This also means we as parents must work to afford our children as much privacy as they want and makes them feel comfortable.

The lesson of secrecy versus privacy breathes agency to life.  The impact is far reaching.  When a child knows that their body is private not secret they also know no one should transgress against it.  This is vitally important for children with special needs who are more vulnerable to abuse and potential sexual predators.  For a child with autism who has hard and fast, black and white rules for language and living it is life saving to teach that secrets are never ok and private and privacy is a right that is all theirs.

The life giving water of words suits me. It is a babbling brook that feeds my family and protects them.  It gives them shelter and private place to pour out their deepest selves.

On Fear

On Fear
Some weeds are beautiful

The grass was long and uneven; weeds grew thick and straggly in the landscaping.  The sight got under my skin like the tiny bits of hot sand from the driveway that worked their way in when I decided not to wear shoes to run and grab the mail.  The asphalt burned underfoot; I concentrated on its heat to distract me from the messy exterior, but more so to distract me from the intensity swirling within.

I wanted to tear at the plants, ripping them away until our house looked manicured again.  I wanted to return inside to a home that was orderly and neat.  There was a rising scream that filled my chest like the steam expanding in an over-full pressure cooker heated too vigorously, but it never escaped.  

Our life is unseemly and wild like the weeds that grew in fits and spurts crowding out the manicured beauty of the landscaping.  It is hot and bothersome like the asphalt with little sand rock pebbles that pushed and singed.  But none of that exterior change would change anything.  In the end our fears are generally not about that which is without but that which is within.  

I fear I am not enough to parent the extraordinary and tame the wild.

***

They are within me and with out me; I grew their tiny bodies inside of mine where they shed cells that will forever circulate within me.  Our relationship is soft and silky yet impossibly strong like an invisible cord that tethers us to each other.  I’ve relied on this bond, read the small telegraphing movements of the cord, since before they drew their first breaths.  The bond is strong and primal, as old as the mother-child relationship itself.  I trust our fettered souls.  They have changed me at a fundamental level.

Yet, I do not trust myself; that I am enough, that I can do enough, that I love enough, that I see enough, that I have fought enough, that I have done enough, that I will be able to save her.  That I will be able to save her.  The rising scream that filled my chest was born the day I was first introduced to her immense need—the words Tuberous Sclerosis Complex.  

When fear looms as large as the weeds ready to overtake my hedge, I must remember, that my tether is to my children and not the devastating and incurable disease that has ravaged our girl.  There is no way for one person to be enough in the face of all of that.  But, there is one thing that is enough in this world and that is love.  It is that which wove the cord between us.  If only I breathe and approach it all with love the fear will lessen; and someday I will feel safe enough to release the sobbing scream that keeps me chained to the fear.