awareness & acceptance
April 2, 2013 § 18 Comments
Today many will adopt social media identities in acknowledgment of Autism Awareness. Some will debate the value of aligning families and individuals with established campaigns to elevate consciousness with readily recognizable puzzle pieces; gathering individuals into a unified banner of blue. For our family awareness and acceptance are themes we celebrate daily, privately, among those individuals who see us not in shades of blue or missing pieces, but as individuals who are complicated and complete as is.
My son was the same little boy post-diagnosis that he was in the minutes before the word Autism seeped into our vocabulary. His life is linear, sometimes spiraling in its changes, but seamless in its fluidity. Incorporating our son’s diagnosis into our lives created an opportunity to understand pieces of our son more clearly and to lend support to enrich his experiences. We know him, first and foremost, by name not by complicated acronyms that outline needs.
In honoring the lives of those touched by Autism and the extensive collection of family, friends, therapists, and physicians who walk among us, I would ask strangers to open their minds to awareness and their hearts to acceptance with small acts of patience and compassion not only today, but daily.
titles & meaning
March 10, 2013 § 2 Comments
I have become acutely aware of titles these past seven years. Medical diagnoses and academic interventions have created new ways of addressing my children’s needs through measurements and labels intended to create opportunities to better understand and appreciate their abilities. Recently, test scores created a lesson in honesty and humility as I learned a little about myself and the meaning I assign to titles.
For years I have endeavored to weigh that which my children know against gray areas of uncertainty. Often the standard for measurement rests in test scores as reflective of academic ability. While administrators and teachers compiled scores into potential, I thought I had shed my need for validation in numbers. I dismissed placement as irrelevant and abstract, in truth I was very much tied to the titles I professed to disdain.
I suppose I could trace my own experiences as a student, drawing meaning and assigning value to how I perceive my children’s labels as students. I could also chart my daughter’s journey, identifying contradictions between labels and ability. Instead I will share pieces of my son’s story beginning eight years ago, his kindergarten year. An early reader, I championed my son’s abilities and noisily celebrated his earliest accomplishments; aware of an otherness we had yet to comprehend. I substituted academic success for social failings, consciously drawing attention to my son’s abilities to obscure gray areas of doubt.
By first grade we were armed with diagnoses that helped create a new consciousness. I embraced uncertainties determined to gather information. I set aside previous expectations grateful for answers to explain behavior and struggles that did not align with ability. When the teacher informed me our son would be tested for a Challenge program, I saw an opportunity for him to find belonging for his strengths. He tested at the same time we explored a new treatment and I allowed his perceived failure to be blurred by the variables outside our control.
Rather than deem my son excluded from certain opportunities by inability, I dismissed my own desire to label him exceptional. I adopted self-depreciating humor to camouflage disappointment. Underneath carefully choreographed casual disinterest was a secret wish that others would see my son’s abilities in neatly compiled data.
This year test scores placed him in a new limelight. Teachers, administrators, and we as his parents were faced with information that suggested a place of belonging in an advanced academic setting. My son might never be an athlete or musician, but for a moment there is a chance to give him a sense of belonging among peers for a difference that is worthy of respect. After years of feigned indifference, the truth is I am emotionally invested in these titles that define how others see the young man I try to shield from judgment.
good company
February 13, 2013 § 7 Comments
Today I shared a milestone with two very special companions, my husband and son. Together we met with our son’s principal, special education coordinator, teacher representative, speech therapist, social worker, and aide to review this year’s academic experiences and outline our goals for the coming year. This was the first time our son accompanied us to his annual Individualized Education Program.
Prior to our meeting I diagrammed the room where we would meet, marking who would be in attendance and most likely where they might sit. I wrote our son into the picture, too, before outlining the process of introductions and formalities. I was prepared for my son’s voice, but the sight of his deliberate signature on the list of participants in attendance was a source of pride. His pen stroke centered him in a significant moment, a beginning that he will reference for years as he joins us in mapping his future.
Sitting between my husband and son I cast a silent note of thanks into the air around us. On this day we were a team within a team; a room of invested and inspired individuals working together in harmony for a young man with big dreams and endless potential.
rite of passage
February 8, 2013 § 4 Comments
No longer little and pliable to pleasing me with small civilities empty of meaning except for the simple joy of parental pride their offering lends, my son is reveling in his transition to a teenager. His extensive vocabulary and formal statements of self are picketing the peaceful space between us with noisy disruptions, drawing lines of protest that leave me trapped in a web of words, rules, and expectations that congest our conversations with assumptions.
Occasionally I find myself measuring conversations for misunderstandings, uncertain when my words became muddled by my son’s moods. Fortunately I am in good company, trapped in this space with my son’s frustrations alongside my own. Begrudgingly I remember he is exercising his independence, weighing his sense of self and his understanding of the world around him in assumptions that lend me a peek into his perspective.
Tonight when my son began posturing in front of a friend with casually hurtful statements of injustice I set aside my emotions engaging him as a young man to better acknowledge his own accountability. I spoke firmly, placing markers of respect among my directives to help my son find his way. I miss the ease of his unchallenged acceptance, but I am finding peace in small subtle lessons in communicating. Little reminders to listen patiently, acknowledge and accept differences, speak in respectful tones with kind words; mile markers guiding my son as he stumbles into maturity. Our errors and growing pains, uncomfortable rites of passage.
perspective & planning
February 4, 2013 § 8 Comments
In a little over a week my husband and I will gather among teachers, therapists, administrators, and support staff for our son’s annual IEP (Individualized Education Program) meeting to discuss his experiences this school year and create a new plan for the coming year. Each meeting over the past seven years has created new opportunities for our family to challenge ourselves to honor our son’s ever-changing needs, this year we are adding a new chair to our table of experts, requesting our son sit in on the process.
From the beginning I have honored our son’s unique perspective by bringing written representations of his experiences, created in his own hand, to these meetings. Drawings, lists, and letters have filled gaps in comprehension between observations. Conscious that each year our son grows more independent and that he will, one day, need to advocate as an adult for his education and eventually his career I have determined this step is essential to his journey. This decision comes one year after a difficult experience.
Last year we struggled as a team; teachers were without resources, the school was without strategy, and our son was lost to challenges that created an expectation of failure. My husband and I endeavored to create relationships with otherwise unfamiliar teachers and support staff without the reassurance of trust. No longer nestled in the familiar rhythm of our elementary school experiences we were overwhelmed. Every member of our son’s team reached for a lifeline that had to first be constructed with procedures that consumed time we didn’t have with mandatory requests, documentation, and extensive testing. Meanwhile our son showed up each day consciously drowning socially and academically in his educational experience. At the end of the struggle there was success, but the cost of lost time could not be regained.
This year I partnered more intentionally with teachers outside the neatly outlined expectations of formal documents, creating personal experiences that built confidence. We met with teachers before the school year began, exchanging introductions that allowed for questions and expectations while creating a relationship that lent itself to mutual trust; establishing an easy, fluid dialogue with teachers.
At all times our son carries with him the memory of failed experiences alongside success intimately, with a presence each of us as members of his team are second-hand witnesses to. Rather than plan around our son, I think it is time to invite him into the process.
Knowing our son is presently emotionally, intellectually, and verbally capable of expressing himself, but not yet mature enough to be in control of decisions concerning his supports I believe we are at a point where experiencing the formalities of the meeting will prepare him to engage in future meetings more confidently. This year he will make a verbal statement to personalize his experience and bring materials to take notes and record questions or concerns for a family conference after the formal meeting.
While we have always explained thoroughly each of our son’s supports, this year those decisions will be shared from the perspective of each individual team member rather than translated by us, after the fact, to the person central to our every discussion. I am eager and curious as we near the day, to see how this experience will inform our son’s understanding of his academic resources and for him to recognize the time and care invested by each individual that becomes a piece of a collective initiative.
It is a new step on a long journey and I am grateful for this opportunity to invite our son to walk beside us in preparation to move ahead more confidently into his future.
to my son
January 16, 2013 § 11 Comments
In the earliest days of motherhood I marked your milestones on calendars, each independent accomplishment was cause for celebration. No one cautioned me that there would come a time when acts of independence would create moments of conflict – joy for your competence and loneliness for the company of your tiny hand forever tugging me along.
Over the years small exercises in independence, natural lessons of choice and consequences have created an awareness that accompanies you in my place. You were intended to let go of my hand and move ahead of me as you create your own path. When loneliness challenges joy, I use that free hand to applaud your strength so that I do not interrupt your progress.
In those moments when I do block your path, it is not an absence of faith for your strength that informs my action, but rather old habit. The murky gray social experiences that we have always navigated together have made me accustomed to interpreting the chaos of the world around you. There is never a question of your ability or character; you are foremost kind and curious, you have a goodness that is pure and solid.
At twelve you still believe in things you cannot see, but you question the decisions of adults whose actions contradict their words. Your opinions are unbending and unapologetic, you have not learned to form yourself into other’s expectations. Your interests are solitary but you give friendship generously with complete loyalty. Even when you brace against a boundary with sharp words or challenge an expectation with a choice, you explain yourself before apologizing – trying to create understanding while acknowledging others’ feelings.
Your father and I in our uncool, sometimes authoritarian rule, impose ourselves on your day exercising our right to claim your time and mandate behavior. We hug you when you feel too big, dictate actions, and question your decisions even as we permit you freedom to fail. For a child that sometimes struggles with social inconsistencies we are creating contradictory expectations of independence and submission.
Here’s a secret: we have forgotten much of our adolescence and we are new to parenting an adolescent. We are forever making choices for the adult we hope you will be while trying to honor the little boy you were. Somewhere in all of this we are getting to know the boy in between who is finding his way. On the days it seems we do not understand and that we are hopelessly unfair, I hope you also see the hands that are forever reaching out to guide and applaud as you find your way in the space between our expectations and your own ambitions.
Love, Mom
crashing
December 12, 2012 § Leave a comment
Yesterday was enchantingly deceptive, my son’s evening unfolded with ease and I embraced a tiny measure of academic and social success greedily. Today, twirling through my errands my heart lighter for the simple joys of the day before I was off-kilter when a message from my son’s school caught me happily distracted, defenses down, entirely unprepared for reports of a day riddled with challenges.
While I was checking off last minute holiday errands and visiting with a close friend, my son had run off course at an alarming speed crashing into conflict. My ignorance was indulgent, the awakening abrupt. These moments when an unforeseen challenge mocks a quiet success I begin looking for markers, unraveling available information, trying to piece together a puzzle that might lend clarity and direction. Like a triage nurse I tuck away emotions to better evaluate symptoms, moving quickly to aide.
Today I sought a familiar voice of authority to share the school day’s challenges, guarding my worries behind self-depreciating humor and a smile, my mind working circles around the information. In a rare moment of unpredictable failing there was no easy, logical answer and that reality brought frustration and sadness in the quiet car ride home from school. Despite my best effort some days crash into others and leave me tender, ever mindful of challenges outside my control.
Tonight, as I set aside expectations and tip toe more cautiously around my hopes, I am mindful that my son stands in the middle of the chaos – misplaced and unaware. In truth, I envy his total lack of inhibitions; he is marching happily to a tune all his own and I must remember to hold tightly to his joy least I allow outside expectations to steal a genuine appreciation for his sense of self. He is mine and entirely his own, more beautiful for his flaws.
scrooge
December 9, 2012 § Leave a comment
At twelve my son has mastered the art of disinterest; his legs stretched, body slumped, eyes intentionally slipping skyward on just audible sighs. I sometimes cringe at the angst that accompanies us on family outings. Yesterday my son’s mood sat between us as we filed into plush red velvet chairs for an afternoon play.
While my daughter marveled at the world hovering in wait for the story, my son mumbled impersonal grievances; the darkness of the storyline, the unnecessary waste of electricity in illuminating the set while patrons waited, the potential toxins in the fog. I mothered accordingly, a tiny squeeze to my daughter’s hand registering her joy and a gentle nudge to my son’s knee to silence his litany of misgivings. It was not that long ago that my son hovered on the edge of an indulgent theater chair lost to the beauty of a performance. Older now he hides his joy with the same choreographed cautiousness he camouflages fears.
Sitting beside my son, I registered the challenges that haunt the experience of the theater. Loud noises and uncomfortable lights trap my son in discomfort. Despite his mature form he still curls into himself when sounds and lights cause discomfort others cannot feel. Hands clamped over his ears and head cast downward I slipped an arm around his now broad shoulders reassuring him I understood and helping to mark the safe places to let go.
Like the story that held my daughter under its spell, my son is sometimes lost to challenges within his own story. Yesterday as we watched a timeless tale of a man reflecting over a lifetime in the space of an evening; coming into consciousness of those around him and the errors of his way; growing into a future shaped by generosity and compassion, I gave thanks for the magic of the season and the gentle lessons not lost to the tiny Scrooge beside me painstakingly hiding his fears beneath layers of bravado despite an unconscious, lopsided grin as he neared the edge of his chair.
learning as we grow
December 5, 2012 § Leave a comment
Yesterday I listened to a speaker address timeless and contemporary concerns in parenting teenagers; universal messages of acceptance and patience were tucked among entertaining anecdotes. Sitting beside me a close friend punctuated the afternoon lecture with small bursts of laughter. Side by side I was mindful that my friend is a witness to my journey, the muddled moments and the small victories. The reassurance of a stranger sharing clinical and personal wisdom alongside the company of a close friend sharing experiences and friendship in mothering I felt the same unspoken sense of community that causes me to smile at a new mother, swaying gently with the memory of my own children as infants. In parenting we are a village without boundaries, learning as we grow.
Returning home I reevaluated my tendency to over-diagnose my son’s sometimes erratic behavior as symptomatic of his unique medical diagnoses, reassured that so many of his recent struggles are overwhelmingly typical. So then when my son walked though the front door in a gust of tears and frustrations I felt prepared to embrace the day’s gentle reminders to parent from a place of compassion. Rather than react, I let my son unravel his mood without judgment or lectures. I didn’t coddle or criticize, I treated the child whose shoulders fall closer to my own height these days in much the same way I treated his younger sister recently when she was struggling to share something difficult – I diffused both of our defenses by taking a step back and listening.
Something that previously would have upset me became an opportunity rather than a failure. My son shared his error and without my projecting responsibility he accepted responsibility freely. In turn, I accepted my disappointment alongside pride. Most importantly, I shared a moment of growth with my son I may have hindered with assumptions and expectations. It was an imperfect moment, but I am learning; finding my way with humor, humility, and compassion for the young man finding his way.
possible
November 19, 2012 § 2 Comments
Just before the elementary school bell signaled the end of the day my son and I popped in to the office for a quick errand. As I shuffled my papers into a staff mailbox my son scribbled a note and then gifted it to a child neither of us know sitting on a bench nearby. Peering over the boy’s shoulder I read: Anything is possible.
For all my well choreographed lessons in motherhood, the unscripted lessons I learn from my children are those that humble and inspire me.
scribblechic 