Have you ever felt on the edge? A razor’s width away from the world crushing you? Have you ever thought maybe you should let it? Have you ever wondered what would happened if you stopped holding it up, like enduring Atlas, and let the sky fall?
Of course you have, because you are like me–blessed and burdened by circumstance; you are a parent of the extraordinary. The weight is unimaginable and the task so tiring; for who can hold up the world and the sky?
Nevertheless, we persist.
What is the alternative? For the sky to come crashing down?
It does that anyway; it falls with every crisis, every diagnosis, every meltdown, every school meeting, every stare, every medication failure. And, that is why it is our job to hold it up. It is our job to make sense of it all every time the earth shakes and another crisis rips the heavens from the firmament. It is our job to piece it back together–azure patch dotted by fluffy white, patent-leather black pin studded with shiny bright diamonds.
We must make sense of it for our blessed and burdened, extraordinary pieces of heart walking around outside our chests. For, if we didn’t there would be no understanding, no up or down, no hope. We would be crushed by nature.
Who makes sense of it for us–holding the earth and the sky, picking up the pieces, placing the stars back one by one? Who makes sense of the nonsensical? Who helps carry crushing burden when we fear it will flatten us? When we are weary and we wish it to?
I do. We do. We shoulder our burdens together because we are the few who can understand the job–the immense burden and blessing. We link arms and hunch shoulders to disperse the weight as we speak of the crises, and diagnoses, the meltdowns, and meetings, the stares, and medications. We stoop low and scoop the scattered stars and shattered blue canvas of sky the next time it comes tumbling down and help to paste it back up again–and again, and again.
I grew up in a small town in the New England; it’s rumored that when I was born there were more cows in the town than people. As a teenager, pre-license, I resented the long expanses of subdivisions, corn fields, and barns housing dairy cows; they kept me from freedom. I dreamt of big cities and bright lights; art and music; most of all, I dreamt of freedom.
I dreamt of a place where I was free to shed the cloak of expectation that shrouded me and manifest my own destiny. Perhaps, it was not this at all, but rather, the familiar dream of trading places. Perhaps, I was caught in the universal theory of mind game–what would it be like to be her, or him, or anyone other than me in this stifling place?
When you grew up in a town where everyone knew your name they tended to also know your business. Ironically, nobody there really knew me at all. It was the strangest sense of isolation. I spent my life surrounded by those who had the utmost familiarity and simultanseous estrangement. It was the confusion of being met with the assumptions of others then surprising them, letting them down, or simply being completely misunderstood.
This was a strikingly similar experience to parenting a child with rare and extraordinary needs.
Recently, another mother of a child with rare disease told me that she never thought about running away when she was young; but that she probably thought about it way more than she should as a parent to a child with special needs. Her experience is not unusual. Research has shown that mothers of children with autism have stress levels similar to combat soilders. Who in our line of parenting wouldn’t at least imagine themself somewhere, or someone else? Nevertheless, she likely wouldn’t share her deep desire to escape or trade places with most of her mama friends (yet I’m the one who goes writing it on the internet for all to read) for fear of being judged or misunderstood.
Parenting a child with rare and extraordinary needs is like living in my childhood small town–there is a simultaneous familiarity and estrangement. Most of the people we run into in our day to day interactions are other parents who have some understanding of what it is like to raise tiny humans–there is a familiarity. Yet, our world is so very different than theirs; it is full of complex medical jargon, life or death emergencies, therapies on top of therapies, the bittersweet meeting of milestones, and milestones that will never be met–there is a complete and utter estrangement.
Much like my adolescence, parenting my children has been an isolating experience. I am surrounded by others who hold assumptions of what both me and my brand of tiny humans are and should be like. Over the years I have learned to brush the well-intentioned yet oblivious, parents aside, but it remains a part of my daily life to deal with doctors, nurses, therapists and school administrators who I must educate and shake free from their shackle of assumption in order to see me, but more importantly, my children clearly.
Perhaps hardest with which to deal is the desire to feel free–it is similar to that adolescent desire for freedom. Parenting children with excptional needs can feel stifiling. All parents trade some dreams to care for children and for special needs parents it is more than that. There is no end date in which you can say, “when my child is in kindergarten I can return to work” or “I will get my Master’s when my child is in middle school.” We are forced to surf the wave of our child’s needs no matter how capricious the sea. There is an inexplicable trapped feeling that accompanies that reality.
Despite the stark reality of parenting a child with extraordinary needs, there is great love and great hope. Unlike the dial-up days of my adolescence there are a wealth of resources online to find your Tribe of fellow parents and decrease the isolation. There is also freedom in the very imagining itself–to dream of yourself as someone else, somewhere else–and to run away in your mind–if only for a little while.
I used to dream of bright lights and big cities, art and music; unfortunately, I spend way more time than I would like in a big city, Boston, for medical appointments with my crew. Not exactly what I dreamed of; yet, I still permit myself to dream. I find the time when I can to get lost in my favorite place on earth, The Isabella Stuart Gardner Museum. I stand at the foot of John Singer Sargent’s, El Jaleo and I imagine what it was like to be the Andalusian flamenco dancer.
I trade places places in my mind’s eye and imagine myself deliciously free and moving to the beat. And, in that moment my burden is lighter, my dreams more vivid, and my soul reinvigirated.
I have a magnet of El Jaleo on my refridgerator. In moments of deep despair, when I feel as though I cannot meet the challenge that has been bestowed upon me, I imagine myself the great Andalusian dancer and I buy myself a moment of freedom.
How ironic that a woman forever trapped oil on canvas can make my soul feel so free. I guess that is the magic of dreams–we can imagine ourself anyone and anyway we want to be; whether that be far away from small town New England or the high-stress, high-demand world of special needs parenting.
Light sleepily stretched in through the curtains tickling my nose; it was a nice contrast to the blare of my alarm. Summer days were waning, though the heat gave no signs of giving in, and school days had arrived.
He burst into the room and I knew by the sight of his face that something was already amiss. I asked sister to scoot back into her own bed; she lay limbs akimbo next to me. She huffily popped up and went about her business like a volcano rumbling to life; yet, another symbol of things to come.
Brother settled in and buried himself in me. Moments later out spilled every fear great and small that was packed into his tiny body; it escaped like a torrent through his mouth and flooded the room in a thick heavy anxiety-ridden smoke that choked and colored the sweet morning light in frightful shadows. His head was heavy on my chest; it rose and fell with my breaths and his fears weighing as heavily as his precious crown. I wished this had at least waited until coffee; life never waits. As his mother this was my job and as much as I fear everyday that I am not enough I had to steel myself for him, coffee or not, and surround him in love.
Through the smokey fears I focused on the clear blue of his eyes, slowed my breath, and settled him–co-regulation in fancy terms. I remembered not all battles are won by overpowering, battling and beating the enemy into submission; and I helped him chase the fire breathing dragon of fear creating all the smoke by asking question after question–“and if that happens, then?”–until we landed at his ultimate fear. And then we surrounded that dragon with love. Kay Redfield Jamison wrote, “The Chinese believe that before you can conquer a beast you first must make it beautiful;” in a way that is what we did. Slowly he rose and we moved along.
A wise woman once told me, “mixed seems to be life’s favorite mode.” Nothing is more true in the life of the rare and extraordinary. The diagnoses both my children carry bring with them simultaneous tragic and burdensome hardships as well as tremendous, unique, and phenomenal gifts. Life is in the “both/and;” it is a beautifully messy mix of light and dark, yin and yang, joy and sorrow, comfort and pain. As the dragon spreads his wings readying himself to spew self-doubt, fear, and shame to erode the tiny six year old warrior wrapped around me, sidled right along side are his gifts of intense sensitivity, deep and expansive thinking, a verbal capacity to rival someone in their double digits, and infinite kindness ready to meet it.
My job as his mother is not to slay the dragon for him–it is his battle; likewise, it is not to erase the cruelty of the dragon–the dragon is part of him. My job as his mother is to hold the both-ness of it all for his young mind; it is to breathe with him through it and share my calm with him, share my strengths, my love, and help him learn to balance the intensity of it all. My biggest job is to be a mirror for him and shine back his exceptional strengths–to highlight them so that he may learn to depend on those strengths and himself in the future. Both are true for him.
One of the hardest parts of mothering the rare and extraordinary is learning that one can not do it all, one can not “take it away,” “fix it,” one can not schedule enough therapies in the day to take the hard parts of life away, and that one cannot be everything that one’s child needs because one’s child’s needs are so vast–so expansive–and specialized that one must rely on others to help give one’s child what they need to thrive. Mothering the rare and extraordinary is also about remembering in all of this that one’s child and one’s self as a mother is perfectly and wonderfully who they are meant to be–scars and all. It is the “mixed mode of life”–it is the “both/and.”
My love is fierce and it is powerful. My love is a hurricane of gale force wind-reckoning and a delicate breeze caressing the cheek of a child; it is both terrifying and wonderful. I am both. My mothering is both. It is all in the balance.
Part of mothering is also learning that one’s children mirror back one’s self as they learn and grow. I am mothering them well when I claim myself in my entirety–when I make my beasts beautiful, when I stand tall in the both-ness, when I claim space, when I shine a light on the parts of me that live in the shadows and proudly proclaim them as mine in my wholeness. That is more powerful than any additional therapy I could cram into our already bursting schedule.
We are all a simultaneous mix of vulnerabilities and strengths. For the rare and extraordinary the volume is raised until deafening. Everyone deserves to have their vulnerabilities met with love and their strengths mirrored back to them. Claim your space. Love your dragon. The greatest power comes from loving that which seems most unlovable.
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.
My eyes are met by the blue glow of the browser screen in the dusky morning light; pictures of smiling parents, school buses, cooly coordinated clothing and backpacks filled my feed. I sipped my coffee and scrolled past looking for the morning’s news–the new-age version of the morning paper and cup-o-joe . Typically I waited until I was a full cup in to read any news; these days my soul can’t bear world affairs without a full infusion of java. But, the happy school pictures, no matter how buffed of their reality and internet polished, tugged at my gut too much for the mere sips I was in to my first cup.
My kids are still a couple weeks away from returning**, and while I am certain I will likely look near internet meme worthy in my triumphant glory upon their return the truth is much more complicated. When I send my kids off to school I am sending two very complex creatures out into a system that is not intended to receive such complexity.
Let me pause here before I go farther and lose anyone…
There is currently a lot of push back to the idea of “uniqueness.” It is often lamented that parents all see their children as “special snowflakes.” This is not the subject on which I am writing.
Fundamentally, people, including the tiny ones, fall into a general distribution on many attributes–height, weight, intelligence, reading ability, etc. This is called the Bell Curve. The majority of the population falls in the middle and the rest spread thin on both ends. For example, Albert Einstein fell way out on the far right tail end of the Bell Curve. Those with Intellectual Disabilities fall somewhere on the lower end of the left side of the Bell and its tail. The majority of us fall in the under the largest bell shaped portion of the Bell Curve.
Complexity could be defined as the tail ends of the Bell Curve–the very top and bottom outliers of the population. The American public school system is not well equip to handle learners who fall in those tail ends–complex learners.
The public school system and compulsory education was developed and took hold during the Industrial Revolution; this was a time when mechanization, assembly lines, and rote style tasks were prized. Much has changed in the last century and in many areas education has lagged behind.
All children enter the same education system, if they enter public school, and for those who fall outside of the center of the Bell Curve it can be disorienting. The classroom is a foreign and unwelcoming place for children whose senses are like superpowers tuned far past the pack of typical learners. The other students are overwhelming for students who lag behind in social skills. Desks are confining to the child whose insides are wound up and humming like a motor and must move in order to listen and learn.
There are inordinate ways that complexity finds its way into every corner of every classroom of every school. Sometimes the complexity is quiet and docile and is overlooked–a child who is passed year to year and still cannot read. And, sometimes it shouts and screams, throws books, and scares teachers and students.
This is the type of complexity that the other parents speak about in hushed tones at the bus stop or in anger voices at the PTA meetings. “Those kids” discussed by parents, teachers, and administrators with wrought hands and tense faces in coffee klatches and administrative meetings, “those kids” referred to as behavior problems said to be ruining the education of other children–no one never really quite understanding that it is the system’s failing not the child’s.
What most people don’t understand is that “those kids” are at the very essence complex learners being jammed into a system that was not made for them. And, yes, we must all learn to live in a world with certain rules and certain socially acceptable behaviors but as young ones we do not have as many choices as we do when we are grown. As adults, we often choose to enter into systems that accommodate for our complexities and exceptionalities. We do not choose desk jobs if we are on-the-move, physical, and energetic beings; or, if we do we find outlets during our day. But, children are all placed at tiny, confining desks no matter the exceptionalities they pack in our backpacks.
All kids, even the ones who fall within the meat and potatoes of that Bell Curve, carry with them untold treasures, secrets, and burdens in their proverbial backpack to school each day. All of said backpack detritus is often unpacked in the form of behavior. Behavior is communication. And, behavior can be much more dramatic for the complex kiddo. It takes kindness and flexibility in the system to help decipher this communication into meaningful information–to move through behavior towards availability for learning.
As the new school year begins, I hope that my kids and all the children out there who need it most are met with champions with in the system. There are many with in the system who we have been lucky enough to work with already who understand the need for flexibility and innovation. We need more who work tirelessly to remove the word “those” from in front of “those kids” and simply see the “kids” in front of them no matter the noise or complexity.
**this means more back time for back to school blog posting 😉
His smooth skin skin rubbed against my arm and the tension of the day melted as we dove headlong into the alternate universe laid out before us on the page. I drank in his sweet smell–a unique childhood mix of the remnant of fresh outdoors and bubble bath. The quiet time I shared with him reading was my favorite part of the day; a sacred time reserved only for the two of us.
It was the fourth book of Percy Jackson that night, following a particularly difficult day. The day had been spent draining the gas tank in a circuit around half the state for a rapid succession of doctor’s appointments and therapies. Our shared time had been staccato disjointed car riding and waiting room rendezvous. I was tired and I didn’t even particularly want to read, and there were innumerable reasons why I did.
His skin reminded me of him as an infant and I longed for the days when things were simpler, and for us that was saying a lot because there was nothing simple about two children in rapid succession one of whom had a rare genetic disorder. As I read on about demigods and gods, Titans and Olympians, quests and battles, my mind wandered to my sweet, sweet boy. Was I failing him? Was I failing both my children? Was this all simply too much for him? Was it what he needed or what I thought he needed?
Damn that Sally Jackson, Percy’s mother in the book series, she gets me every time! My son, like Percy, is just a little different. Was I doing him a disservice with all this running around? Maybe he’d be better off spending all that time figuring out what works best for him in this world rather than all of it in my silver Kia chariot from here to there and in fancy sensory training gyms.
Who am I, from my limited world perspective, of living and learning in the way that I did to say what is best?
…other than his mother. There is something to be said for that.
Sally Jackson recognized this for Percy. She recognized that her life as a mortal would not allow her to understand certain things about her demigod son, and as such she made her decisions based on mother’s intuition and love.
She held strong and she yielded.
We all desire our children to be like us, save for our faults, be better than us, have more than us, and to succeed. A dream for the future was knitted like a shawl to shroud the baby in before he was ever born. When born he was swaddled in his shawl of dreams and cared for by those who dreamed them. Some dream shawls are translucent covers one can see through; those cover the child for all to see both the child and the dream as he grows. Yet, others are thick opaque armor that obscure the view of the actual child and stunt his growth.
I believe I bestowed my son a translucent dream shawl, yet it is often hard to be objective in the case of your own child. Even the very time we spent reading together was an adaptation from the dream cloth I wove.
Our house is filled with books; there are bookcases in all the rooms save the kitchen and bathrooms. Our house is this way because it is what I value. The world of words is scaffold for which I hold up and make sense of my universe; for my bright boy, written text is a formidable landscape with no easy access. This used to panic me, frankly, it often still does. It pained me to the depths of my soul that written word was laborious and basically inaccessible. I used to spend the time during the evening having him work ever so diligently on reading to me, as strenuous as that could be for him; because, in the end my desire was for him to become a reader. Until I shifted, and ensured access to the difficult textual terrain by serving as Sherpa and read aloud or played audiobooks.
He and I now share a special connection because I granted him access to text and fostered a love of reading. I held strong and I yielded. Because, my dreams for him are finely woven, intricate, and the strongest uniting thread is a desire for him to be valued, loved, seen, unburdened, and free to become whoever he is meant to be.
During our shared time, I bring my boy into the land of literature and we take grand journeys together; in return he has granted me access into the most magical and deep thinking recesses of his universe. That is the most gracious gift anyone can be given–access into one’s inner landscape. If I did not yield I would not have been granted such a gift.
This leads me to wonder on what other areas I should yield. Perhaps I should take a page out of Sally Jackson’s book, ask my son, and judiciously follow his lead.