what I knew, when
September 16, 2015 § Leave a comment
Today, in a wonderfully open conversation with a high school psychologist, I was asked when I first knew that something was wrong with my now fifteen year old son.
Here’s the thing: I didn’t.
Other’s asked me questions, a few raised concerns, but I was never worried. So many of the behaviors that were red flags to strangers, were my only experience of normal.
It wasn’t until the summer between Kindergarten and First Grade that my husband and I understood there was an explanation for some of the inconsistencies between our son and his peers. We assimilated the new information into our language, recognizing our son would need to master certain challenges to better navigate his educational experience successfully, but we never saw our son with a lens other than love.
I didn’t know ten years ago that something was wrong. All these years later I still think it is more likely that well-intentioned adults are misguided in their assumptions than my son is in his behavior.
The young man who sometimes struggles with spontaneous dancing and poorly timed sarcasm, who rushes to share his ideas and forgets to plan ahead is also empathetic and loyal; he is fearless and uninhibited in his curiosity and passion.
Someone once told me something was wrong. Years after my son’s diagnosis I know that the greater wrong would be to remake a child into someone else’s idea of normal.
What did I know, when?
I know that if we speak of differences as problems, trouble, something to be fixed or devalued we lose sight of the complicated blessings of imperfect experiences. From the beginning I knew my son only as himself, someone who makes my days better for the differences that are our normal.
I think it is important to note that in response to my answer the school psychologist not only respected my perspective, but agreed. This mindset of appreciation over tolerance is essential, in my opinion, to valuing differences as abilities over handicaps.
to my son
August 25, 2015 § Leave a comment
For as long as I can remember you have always been quick with a smile and kindness. My favorite recent memory was a moment of unabashed silliness in full public display. You silently dared your father and I not to laugh as you mimed a personality uninhibited by the company of strangers. We laughed earnestly and you leaned into the sound as if you might get lost in your contentment. It was pure joy made indulgent for the generosity of your offering.
Yesterday, knowing you carried that eagerness to share with someone new I understood the vastness of your discouragement when you didn’t find the same easy smile among strangers. It will come. Maybe not as soon as you would like, perhaps not as easily as you imagined. None of this is a reflection of your worth any more than it is a predictor of what’s to be.
Continue to offer smiles without expectation, to walk in your own certainty and trust in the goodness we cannot always see.
Love, Mom
to my son
July 17, 2015 § 2 Comments
Sometimes I forget to call out a thank you when things are easy; to remember to praise with the same ease I might complain. We’re all a little tired, emotional, distracted by what needs to be done.
Thank you for helping with every impulsive directive. There hasn’t been a task you didn’t tackle or a request you second guessed.
We haven’t had a pool day yet and your friends are largely occupied with other commitments. It isn’t the summer we imagined on those last early morning school days, but we’re close to a few well-deserved frivolous days.
It’s the final push before our home goes on the market, the next few days are full of last-minute projects and cleaning. Paperwork and planning.
Yesterday your father and I were in your room, shuffling furniture out of the way to patch and paint when I closed the door to vacuum. In neatly arranged letters taped to the back of your door were the words: You’re Special.
When I asked you about the sign, you said that there was a time when everyone seemed mad and you were pretty down. So, you made a sign with what you had.
You are awesome. I wish as a teenager I had the same fortitude to tackle hurt feelings with confidence. To create a message of strength and guard my self-worth.
It’s funny the things we find when we aren’t looking. I was worried about you loosing your summer and instead I found a lesson in resilience.
Love, Mom
to my son
June 21, 2015 § Leave a comment
With your father and sister out of town I woke today wanting to offer you a special day. Something dressed in my best attention without the cumbersome tug of formality. I considered all the places we used to visit, old favorites that seemed a size too small in their sentimental familiarity.
Instead I traded activity for attention. I folded up my laptop and turned the volume off on my phone. I let the household tasks for tomorrow and settled in for all the thoughts so often postponed for a minute that too often is lost between us.
There is nothing remarkable in the shape of our day, rather there was a companionable contentment threaded between each distraction. We were more patient in our attention and more generous with our time.
I don’t want this day to end for the nagging worry that tomorrow I will wake to the routine of procrastinated promises. Let this note to you serve as a reminder for me; the ease of your company is directly proportionate to the availability of my attention.
Love, Mom
sight & seen
June 18, 2015 § Leave a comment
I knew this moment was coming, it is an inevitability of our experiences. A handwritten message on a speech rubric, a casual note on eye contact. Except, for us, there is nothing simple about this encouragement; something in the words themselves strikes at a tender place. I have to remind myself that the author means no harm, but still I wonder if they understand the assumptions of effort in the critique.
To my son’s teachers,
There are years of patient practice in the art of looking up into the faces of expectation. My son does not meet this expectation lightly.
The young man who looks up, however inconsistently, has worked very diligently to do so. He does this to earn approval, knowing it is important to those he wants to please. He is emotionally invested in the effort, but the act itself is often a battle of wills.
Watch his body as he bends toward himself, the wheels turning as he debates eye contact over the internal pull to riffle through endless files of information he might extract if only you will forgive the social stumble as he navigates the cluttered cabinets that hold his thoughts. He’s looking to offer you a piece of himself, to gather his worth into something you might value.
When he remembers to look up, to please you, he’ll gauge you briefly for a hint of interest before scurrying back to his files.
If you smile, he’ll slip into comedy eager to draw more joy. If you look sad, he’ll forget his place, anxious to offer you comfort. If you look angry, he’ll shuffle into an assumption he has failed and retreat into his own disappointment. Every look means something uncertain and the weight of all those choices is sometimes insufferable. His hope is hidden in every sidelong glance, each fleeting glimpse to measure your expression for encouragement.
It is such a small thing, to be seen. Look tenderly at the young man you are asking to see and offer sight in exchange. If you smile, he won’t need a written reminder; he’ll mark his sight by your effort.
growing against the grain
June 13, 2015 § 2 Comments
Tomorrow our son will attend his first high school class without support. This is an exaggeration of course, he is not walking abandoned toward change. His teacher is as aware of his needs as he is of this newfound independence. We are, rather, moving against the familiar with a new experience of change. It is the way we accommodate opportunity.
For years our son has had the company of a personal aide in the context of his academic days. He has not yet matured into self sustained independence; still he is fiercely, passionately, willfully independent in his sense of self. Our experience is ever changing, consistently inconsistent; needs and ability contorting themselves into footholds of growth.
We do not succeed independent of difficult challenges. Neither are we alone in our accomplishments.
These past nine years we have evolved into an assumption of compromise and expectation of progress as we partner with professionals who meet us with anxious questions and eager uncertainty. There have been moments of crisis and conflict born of lessons in the disparity between professional training and necessary accommodations in anticipation of the spectrum of needs that inform the many experiences of special needs in mainstream classrooms.
There have also been humbling lessons in grace as we partner with rare souls who share our responsibility to our son’s education; learning alongside one another as we go.
I have come to understand that IEPs do little to guarantee resources and that kindness is a greater predictor of success. The labels that inform need also bind us to assumptions that are sometimes limiting in their generic untruths. We modify expectations without compromising our dreams.
This new moment is an anticipated uncertainty, one that finds me holding my breath, heart on my sleeve. Hope bound a little too tightly around so many variables I cannot control. In this experience I am exceptionally average, a mother with universal worries in an intimate experience of vulnerability.
So I try to gather words and a tender posture of faith, something that looks like confidence and feels like false bravado.
to my son
June 8, 2015 § 4 Comments
Tomorrow is the last day of your first year of high school. The last two school days have been test days, cumulative evaluations of mastery. Soon we will have a tidy snap shot of academic performance that will outline growth and highlight opportunities for improvement, but for today I want to dwell on your attention to preparation over the weight of your performance.
Whatever your marks, I’m proud of your effort. I noticed the determined bent of your brow as you drifted between subjects reviewing old material. I saw the nervous tension when you shepherded our pup outdoors into distracted play. I watched the way you returned after each reprieve to your studies without needling or nagging.
I noticed you trying your best.
I’m not sure I say that enough. Maybe its this stage of our experience, an unexceptional parenting phenomenon to offer a premonition of hindsight. Lately I hear myself cautioning potential harm without first acknowledging the brave certainty of your leap into chance. I miss the enthusiasm of your early lessons when I would stand aside uncertain consequences and celebrate your curious exploration.
Too often our conversations feel reactionary rather than reflective and I think that’s a pretty important distinction. I am going to try to be a better listener and to pay closer attention to the shape of your efforts.
I’m still figuring out how to be your mother, worrying so much about making the right choices that I sometimes forget to stand still in greater attentiveness to the reality of the present over the certain uncertainty of what may be.
I’m trying my best, too.
Love, Mom
to my son
May 13, 2015 § Leave a comment
Tomorrow is your fifteenth birthday and today I am confessing wishes and worries as I celebrate the shape of your experiences with my own uncertainties. Remorse or reminiscing my mind is caught on the places I might have mothered you differently.
I wish I could go back to the beginning of your young life and change little ripples in the future with different words of encouragement and support. So often I worked to challenge you to reach your potential within the suffocating context of generic social assumptions when I might have worked more diligently to inspire others to reach further outside their comfort zone to fully appreciate the simple joys and acute disappointments of your experiences.
We’ve come to live in the margins of misinformation. The news is quick to capitalize on personal narratives of Autism that either demonize or celebrate the extremities of your diagnosis without the shades of gray that speak to your individuality. In the discourse of your days we expect an assumption that you do not understand the hierarchy of privilege that dictates your conformity over others’ compassion. I wish others would seek to understand your differences with the same diligence you aspire to understand others’ assimilation.
Just once I wish you were allowed to be exceptionally average without a premeditated gesture of inclusion to dictate your place. When did we cease to assume equality when teaching children the value of community that we must extol what should be an expectation rather than the exception?
Some days I wish your spectrum of needs were noisier that other’s might lean more attentively into gestures of care. Other times I wish I could guard your from the sharp edges of ignorance for which you are not calloused enough to disregard. My grief tastes like contempt for discontent; my greed selfish in light of my good fortune. For every complicated worry I harbor, there is a hidden blessing I wish others knew.
The challenges are outweighed by my joy. I laugh a little louder, love a little gentler, fight a little harder, and try a little more each day to become a better version of myself by your example. Quick to befriend and to play, to speak honestly and embrace curiosity recklessly. For all the ways I might change our past, I wouldn’t change who you are.
Love, Mom
{I am tossing this rather raw draft into publication. I wrote this in a moment of vulnerable unrest when my emotions dictated the shape of my words. I was tempted to press delete and forgive myself the negativity, but I think there is a greater sense of self in owning the uncomfortable pieces of my truth.}
to my son
April 7, 2015 § 4 Comments
There is a moment from last week that I keep returning to; an image just askew of my periphery that pulls my eyes off task and towards a recent memory. It is a small thing, but in each remembering it offers a lingering delight.
We had just delivered your sister to a lesson and I had dragged you, to your great disappointment, on an errand. As I combed the store for the necessary items, I caught a sudden movement and turned to see you dancing. It’s the kind of performance most would leave for the privacy of their room, an exhibition I myself would probably reserve for the borrowed bravery of a rarely indulged second glass of wine. Uninhibited you snaked your way through the empty store intoxicated by the music.
I’ve spent so much of your life noting the social norms that it was second nature to entertain a lesson. The words felt bitter on my tongue, puckering my thoughts from the ease of the smile you had only just gifted me. I told you then how much I envy your reckless disregard for thoughtless rules that bind us to a hyperconsciousness for others’ opinions. If I were braver I might have danced with you.
We talk of dancing like no one is watching, but you live with a truer fearlessness. I hope you always hear the music in the mundane.
Love, Mom
to my son
February 19, 2015 § 4 Comments
Yesterday you noted the neighborhood children piling off the school bus and registered familiar faces with remorse. You shared a simple wish for a reset button, a second chance to go back in time and not make old mistakes. You thought that maybe then those children you always considered friends would invite you over and include you in their easy comradery.
For a moment the car was completely quiet. I quickly contemplated all the ways I would use such a button, the choices I would remake and the actions I might retract.
My first response was to honor the humility and self-awareness of your wish. I validated your emotions and shared my own remorse for the impossibility of time travel. Then, I reminded you that friendship is not so easily misplaced. You were looking to the gentler memories.
I didn’t share my memories; the gatherings I tolerated adults mocking your inconvenient fascination with batteries or unfortunate unauthorized appropriation of household and garage materials for play. I didn’t share the destruction their children had similarly imparted on our home or defend your impulse to create when left outside the circle of their children’s company. I thought I could pretend away the things that divided us as parents, to save you a place at their table. I still remember the sadness in your voice when you would ask for help on the routine occasions those same companions made you cry and the quick dismissal of your peers’ accountability as we dismissed ourselves prematurely from each invitation.
I cannot guide your wishes any more than I can undo what has passed, but I can inform your understanding.
Friendship doesn’t point fingers or turn its back. It doesn’t come and go to the lull of convenience; it accepts us as whole, filling in the broken places with kindness not criticism. Sometimes we miss the illusion of something familiar, forgetting with the luxury of time the uncomfortable pieces of casual harm. You haven’t lost the safety of friendship, strangers lost the privilege of your forgiveness.
This doesn’t ease the ache in your chest; you miss what was never really there with the fullness of genuine loneliness. Rather than looking behind you, look forward; your truest friends are those who stand beside you.
Love, Mom
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