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.
for joy
January 13, 2012 § 2 Comments
I was very young when I declared to my parents and a family friend that I wanted to be a teacher when I grew up. My step mother was an elementary school teacher and this afforded me the gift of visiting a school in the quiet months of summer. I have a deep affinity for the space of classrooms, knowledge resting among the walls and tucked in reference books for the finding. My childhood declaration was met with doubt and adult reminders that prioritized monetary gain over dreams. I did what children do, I hid my wish keeping it safe from judgment until it was forgotten.
By the time I left for college, my future was mapped with others’ shoulds: You should be an attorney. I studied in preparation for law school; choosing classes dense with reading and writing, subjects that were diverse and demanded critical thought. I was hiding among subjects that I loved; my spirit whispering over others’ shouts. I was immersed in books that inspired me, sharing thoughts among peers and professors that lit fires in the quiet corners of my mind.
Then, before committing to a career, I became a mother. Each day I wake to life lessons and opportunities to guide my children. I gather them on adventures into books that push at the boundaries of their world. My tiny students with unique needs perpetually lead me to structure spontaneous lessons to help them understand their world. I am inspired and challenged on a path where I am neither teacher nor lawyer, ironically spending my days teaching and advocating for my children as I navigate school work and legal rights in an effort to provide for my children’s needs. My childhood dream found direction in motherhood.
As my children share their dreams, I try consciously to celebrate their statements of self. I want them to listen carefully to the whispers that come from within and to chart their lives with choices that resonate and bring them joy. I try to do this with words married with action, here. I am teaching my children to make room for joy in their lives, while creating moments of joy for myself.
For as long as I can remember I have written letters. Quick notes passed in classrooms, summer letters to school friends, love letters tied with heartstrings, and dreams scribbled in the margins of my days. I write for clarity and for joy. My children know that I do this and that writing is an expression that brings me happiness and comfort in the way building with LEGOs and creating artwork bring them pleasure and peace.
Slowly, I have invited my words to become a larger piece of my life. I do this cautiously, carrying with me an uncertainty born of those early statements of self among family and friends. I began here, where few could connect my words to myself, sheltering my feelings of joy from judgment. I still hear others’ shoulds. Throughout my life others have said: You should write. Should seems to shadow my joy, expectations suffocating pleasure. I have begun to internalize others’ opinions of how, what, when, why I write as measurements against which I gauge my ability and validate my efforts.
Then something special happened. My husband discovered pieces of me he didn’t know between the lines of my posts. My son serendipitously discovered a post and kept reading, celebrating my words with a hug. My daughter exclaimed proudly to a friend, my mother writes. People I love began to identify me by something I love to do.
I know my husband wishes this act of writing could evolve into a larger piece of our life, that someone would happily stumble into my words and open a door to something else. I know these are logical wishes and that his faith in me is a source of love. I am still growing, learning and dreaming; uncertain how to define why, how, when, and what. I am happy for a place to store my thoughts, for my children, for some day, for me. I write to invite joy and dreams into my day.
company & clarity
November 10, 2011 § 2 Comments
Cool winds have swept us into a season of Thanksgiving. I have been mindful of my blessings, but recently while planning for our traditional turkey meal I felt the distraction of disharmony tugging at my consciousness. Negative thoughts unspoken encroached on my spirit; stubbornly I shoved the unwelcomed sentiments beneath the proverbial rug until I tripped over my thoughts. Then I set aside my blessings, guarding them from dismay, and called my unpleasant thoughts into consciousness naming them like petulant children. Anger came quickly.
I have welcomed guests into my home in the name of etiquette and family obligations, allowing resentment to slip through the door. Old wounds sit freshly salted; resentment chafes at gratitude. Self-righteous, anger seemed to mock my false sincerity.
I am trying to allow myself forgiveness for my anger and permission to feel discontent. This brief exercise in naming and claiming responsibility for my unkind thoughts reminded me of a book I once read, The Dark Side of the Light Chasers by Debbie Ford. The ugly emotions simmering beneath my gratitude were poisoning my thoughts. Giving my feelings light and air has brought me peace.
Rather than assume new injuries or dwell on old hurts, I am looking ahead to Thanksgiving with a new consciousness; expectations centered in awareness and responsibility founded in acceptance of imperfect relationships among imperfect people.
distress signal
October 28, 2011 § Leave a comment
I am uncomfortable asking for help. Instead, I joke in an effort to make light of a problem, deny I need help, or escape the reality of a difficult moment in a book or with busy work. This week, in the company of friends, I gave voice to distress; I sent out a signal for help. Friends guided me towards a place of strength.
The realization that I am uncomfortable asking for help came a few years ago when I was in preterm labor with my daughter. As I lay in bed, unable to care for myself or my family, I was forced to prioritize our needs and seek help. Asking and accepting were exercises in humility. I could not use humor or denial to escape the reality of my needs.
Recently as I absorb my son’s struggles, feelings of fear, uncertainty, and helplessness have left me sad, angry, confused, and overwhelmed. Despite my best efforts to guide my son, I feel lost; uncertain if I have a right to ask for help for myself. In an act of grace friends taught me to ask for and accept help.
Clarity came early in the week when I met with a friend that speaks openly about both personal and health challenges. Without shame and with genuine feeling she shares openly her conflict. Listening I found strength in her vulnerability, unhindered by apology. My friend’s recognition of her own challenges and fears gave me strength to look directly at my own.
I believe difficult truths are revealed in stages. Soon after listening to one friend’s sharing, fate gifted me time with an old friend that gave me strength to embrace vulnerability and share my fears. I let the words tumble freely accepting my own helplessness in the security of another’s care.
Awareness and openness lead to a moment of guidance. A third friend absorbed one of my challenges and lent me wisdom from her experiences. I collected the knowledge like moments of serenity.
Yesterday I sat with another friend, named my problem, admitted I am finding my way, and then let go of trying to project a sense of strength. My openness was met with compassion. I let my worries sit with us in silence; I did not ignore them, mock them, or pretend them away. I gave them sun and air, looking at them clearly in the light of day.
I am learning to accept vulnerability and to celebrate fortitude in the healing place of friendship. Thank you to each of the women who recognized my distress signal.
measure of time
September 16, 2011 § Leave a comment
Big brown eyes brimming with wonder, my son is fascinated by the immeasurable quality of time. His first insight came over a year ago when he uttered casually: I wish there were a way to recycle wasted time. I immediately captured his words on paper and frequently re-read his sentiment marveling at the purity of his wish.
This summer, as the school year approached, he revisited the subject of time feeling overwhelmed by the dwindling days of summer vacation. Mournful and mindful of each day leading up to the first day of school, he was reflective and sensitive. He would passionately proclaim the imbalance of time’s measurement, convinced that time passes too quickly functioning outside the boundaries marked by the simple hands of man-made clocks.
Last night, he came to me long gangly legs awkwardly tumbling down the stairs, a face marked by discovery and a voice hushed with the awe of awareness and said: Mom, I figured out the true meaning of happiness in life. You can wish all you want for your birthday and Christmas, but you shouldn’t. Time will slip away through your fingers, but you won’t realize it. The true meaning of happiness is to enjoy each and every day.
Again, I felt the need to capture a singular moment in time, my fingers rushing desperately across my keyboard attempting to catch his words in proper sequence. This child that came to me as an unexpected gift, a happy surprise, has marked the passing of years with an awareness and wisdom that inspires me to embrace each moment.
just say ouch
September 14, 2011 § Leave a comment
Stubbed toe, paper cut, minor burn; in each instance we instinctively flinch, move to protect or comfort ourselves, and say ouch. It occurs to me that there are other moments when speaking our mind is coded in etiquette, covering up genuine feeling with good behavior. I can’t, I wish I could, maybe next time seem like fantastic, dramatic versions of no. Instead of speaking my truth, I often say yes and then carry the burden of my own self-induced discomfort. I am learning to say no, but the lessons along the way have left me feeling a little sore and muttering ouch.
I spent the first several years of my married life distorting my own opinions, wishes, and needs to accommodate the expectations of my mother-in-law. I was determined to please and escape the stereotypical power struggle. Instead, I created an unrealistic expectation of agreeability that has haunted me ever since. The late introduction of the word no deemed mean spirited rather than an expression of different needs.
I am equally certain I have friends that think I like particular hobbies or collectables because my polite conversation was void of any word resembling no. I am so fascinated and inspired by the diverse group of women in my life that I will nod amiably to garner their company rather than risk differentiating myself by just saying no.
Today, sitting in a room full of bright, thoughtful women, that give generously of their time to our elementary school I wondered how many of them are overextended because somewhere along the way saying no was deemed selfish. This thought distracted me throughout our noon meeting as I considered the familiar faces of the volunteers. Despite the variety of fundraisers or academic events, it seems the same names find their way onto each list. This year, I stepped back from a couple of my previous responsibilities for personal reasons; logical, valid reasons that suddenly felt selfish in the company of other mothers. I began to feel guilty for using the word no even though speaking it gave me peace.
I have no clear answer, but I cannot seem to shrug the question of how do we express ourselves genuinely without alienating people we love and while acknowledging our own unique needs?
a lesson in labels
August 31, 2011 § 1 Comment
At an early age my son was diagnosed with PDD-NOS and ADHD, a jumbled mess of letters, their meaning uncomfortable and overwhelming. Pervasive Developmental Disorder – Not Otherwise Specified, an Autism Spectrum Disorder, and Attention Deficit Hyperactivity Disorder.
I remember the moment of my son’s diagnoses with physical clarity. My body struggled to draw air while images of my son’s past and future flashed before my eyes; a conscious drowning. My heart heavy with fear for the future, my mind desperate for facts, my body achy with unexpressed grief; physically, mentally, and emotionally I wanted to reject the diagnoses. I worried doctors, teachers, family, friends, and strangers would compartmentalized my son’s spirit and unique mannerisms to fit in the confines of sterile, medical labels.
That day my husband and I promised one another to use our son’s diagnoses as tools for understanding him better and helping him live a full life. We endeavored to discuss our son’s needs honestly, without apology or shame. The first year of his diagnoses was focused on facilitating our son’s emotional, social, physical, and academic needs. Throughout that year we maintained a sense of privacy concerning our son’s diagnoses as we educated ourselves and made difficult decisions. It was important to us that we share correct information and make decisions free of others’ expectations and opinions. We had a small, close-knit support group consisting of physicians, psychiatrists, therapists, educators, family, and a handful of friends.
One year after the diagnoses we shared our news in the lines of a letter as we raised money to support Autism Speaks. Our son tallied the donations and read the letters of support that poured in, aware only of love and kindness from the multitude of faces that were a part of his life. It is with this experience that our son, at the age of 6, first told people he was Artistic. He understood part of his diagnoses meant he had a collection of characteristics typical of children on the Autism Spectrum, but speech delays created an endearing proclamation of Artistic. He would smile brightly at the revelation and continue on his way, unaffected and proud.
With the development of homework, we began to understand new challenges stemming from ADHD. We talked directly to our son and teachers, but less openly to others. Too often I found myself in the company of passionate debates concerning diet and medication. I honor others’ choices for themselves and their children, but wanted our family’s decisions to remain uninfluenced by popular opinions. It was the diagnosis we didn’t talk about.
Standing in line during my son’s Middle School visitation, a woman asked us for medical forms. My son, loudly and abruptly, declared to the woman collecting forms that he has ADHD and takes medication. I flinched at the stark revelation and instinctively looked around to gauge the reaction of those around us. I was still processing my son’s statement when a young girl behind us in a full voice announced she has Asperger’s and takes medication. Just like that, I felt eccentrically normal.
Years of tucking parts of our life into safe pockets of friendship and suddenly it felt okay to let go. My son likes who he is even if he doesn’t like his challenges. There was a lesson there in a moment shared with strangers. For all my efforts to see my son completely, it was my son that showed me he is whole.
gut
July 8, 2011 § Leave a comment
So often I am torn between speaking out and listening for direction. As my words and thoughts filter into comprehension, questions emerge and a sense of panic ensues. I want the moment back, a do over! I want to sit still and hear what the other person would have said if I hadn’t nodded my head in an instinctive good listener response or abruptly interrupted. I want to raise my hand and confess, I’m lost.
This is my most recent realization: I am still learning to speak up and have faith in that tiny voice that makes my heart race and stomach ache, my subconscious trying desperately to capture my mind’s attention. Today I am trying to follow my gut, worry less about what anyone else thinks, and ask those nagging questions making me uncomfortable.
between the lines
July 5, 2011 § Leave a comment
I set the book aside, knowingly. Days passed and I would greet the title with each dawn, waiting for the right moment to begin. On a cloudless day, beneath a brilliant blue sky, I sat in the shade of my backyard and slowly welcomed old memories between the lines of another’s words. With a lump in my throat and a full heart, I read The Anti-Romantic Child: A Story of Unexpected Joy by Priscilla Gilman.
Our lives have different beginnings, but our stories are hauntingly familiar. We meet in a place of beauty; kindred spirits bound by grace born of love for our children. Two mothers searching for and finding joy in our children’s extraordinary gifts and challenges.
My son, my first-born, was my homecoming. The first time our eyes met my speech failed, but my heart opened in an awakening. Large brown eyes, sage and serene, mirrored my own. Long, thin fingers wrapped around mine and centered me in a place of peace. I fell into contentment.
There were no other children to contrast my son’s development and I was blissfully unaware of heartaches and struggles looming in the shadows of our future. We toiled away hours, days, months, and years oblivious to red flags that would later signal an otherness. Endearing traits would later become cause for concern.
One doctor, with little more than an unsettled feeling, refered us to a child psychiatrist that would see what we had not. Diagnoses and abstract initials hovered heavy, stealing the air from the room as we began to understand our son in a new language. With love and hope we have found our way amidst the endless unknown determined to embrace our son for the special soul that he is.
Between the lines of a stranger’s story I have found strength and inspiration; a celebration for the unique spirits that accompany us on our journey through motherhood.
Please note: This post is my effort to capture my initial feelings as I read this very special book. I consciously did not reference the author’s words but rather my emotional connection to the experience of reading them.
am (not)
July 4, 2011 § 1 Comment
The word (not) tucked in the middle of a thought frees me of accountability. I am (not) a cook. Read: dinner may be bad. I am (not) a cleaner. Read: I didn’t clean the [insert floor/bathrooms/stove here]. I am (not) an athlete. Read: I don’t have to fail because I have yet to try.
I am (not) a runner. The thought of people watching me run makes my chest tight and I get a little clammy. Still, I have come to find the commitment and passion in a runner’s voice inspiring. So I set (not) aside and invested a little time and energy into trying. I ran.
Today I completed my personal c25k challenge. I am (not) a runner and there is no 5k in my near future, but I am inspired by the feeling of having done something new that I did (not) think I could.
scribblechic 