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.