to my son
May 20, 2012 § Leave a comment
Thank you for your easy company. I forget sometimes to set aside my worries and teaching moments for simpler moments of shared time. While your father and sister embarked on an outdoor adventure, we settled into lazy, directionless time together and the conversation skills I normally practice with you unfolded easily. The sound of your laughter and your sharp wit were a happy soundtrack to our errands and meals together. You are ever the little boy who used to toddle along beside me, but now your form stretches near my height and your gait falls comfortably in my company. There are no photographs to capture our laughter and no extravagant plans to recall this time. Just a moment’s reflection with a full heart. I loved you from the very beginning, but liking who you are is an endless blessing. Love, Mom
socially speaking
April 18, 2012 § Leave a comment
The unspoken language of our bodies, innuendo, sarcasm, and play. My twelve-year-old son endeavors to speak the unspoken, stumbling through with fragmented comprehension. This is his greatest challenge as a child on the Autism Spectrum.
Before his diagnosis the tell-tale signs were endearing quirks. His ability to play creatively, independently for long periods of time were perceived as a strength. His interaction among peers was limited and awkward, but his eyes always found ours and his mannerisms were respectful and engaging. As an older child navigating the congested halls of middle school, so many moments of misunderstanding have created a new awareness of invisible handicaps as my son attempts to speak the language of social.
On his birthday my son came home and diligently reported that students on the school bus threw items at him, saying they were presents. I contacted the appropriate school administrator to request they observe the bus video and ensure that my son was treated respectfully. The video footage showed my son caught in the middle of a game of keep away where other students’ belongings were being passed around and inadvertently gifted to my son after he announced to the audience of travelers that it was his birthday.
These moments of contrasting perspective and internalization create an illusion of harm. My son feels victimized, unliked, and curls into defensiveness. Stretching his perspective outside this space and teaching him to see the world around him with neutrality and understanding is an ongoing exercise towards speaking the unspoken.
On this occasion we have the benefit of an administrator that is willing to coach our son using the tools available. A patient individual willing to share the bus video with our son to give him a different view of an experience, a rare opportunity to look at a moment of time; studying the social interactions of his peers. A small step, a large lesson. A singular act of patience and kindness.
extra{ordinary}
April 16, 2012 § Leave a comment
Monday. Just another day in a string of days that once gathered together create a week in a month, in a year, in a lifetime. Only today was no ordinary Monday, it was an extraordinary boy’s birthday.
My husband, daughter, and I woke our household celebrity with a sleepy rendition of Happy Birthday. We shared breakfast and a simple gift before sending the birthday boy to school, his head was full of holiday while his body was begrudgingly grounded in the business of school.
The call came late morning, a muddled message with creative pleas to come home. My husband and I responded with a temporary reprieve from the routine of the day curious to uncover the story behind the request. Over a homemade sandwich our son shared the simple, suffocating frustrations of watching his birthday hours slipping under a pile of school work. We talked through the unglamorous truth that birthdays do not dismiss responsibilities and then shuffled a calmer pre-teen back into the fray of middle school with promises to preserve a piece of our evening for celebration.
A wish to feel extraordinary and the reality of the ordinary culminated in a lesson about responsibility and a stolen moment together with our son. It was an extra ordinary day.
to our son
March 1, 2012 § Leave a comment
Yesterday a parent shared with me their child’s stories of peers’ cruel behavior towards you. My heart sank with the realization that you had kept these recent wounds private from me. When I asked about these unkindnesses your words I’m used to it weighted me in sadness.
Know this: you are worth fighting for. I am sorry for the days you bore the weight of this alone in silence. Your father and I will be your voice and speak your truth until you find your voice.
There is no excuse for unkindness, no explanation that dismisses bullies of accountability for their behavior. Your story will not be written over by others’ words. Do not wait for others to validate your harm, your father and I are your witnesses. This is the beginning of a new day.
Love,
Mom and Dad
A’s of education
February 28, 2012 § 2 Comments
The early weeks of this school year my son flourished in his new middle school setting. Elementary school struggles with anxiety stemming from poor peer relations typical of a child with social challenges born of special needs seemingly faded into a new beginning and I celebrated my son’s eagerness to attend school, explore new social activities, and make friends. Then unkind words and actions robbed my son of the easy smile and effervescent personality that are his hallmarks; he withdrew in sadness and frustration from peers and academics.
Those first months it felt as though we were all treading water; my son, the school, and our family making little progress despite our frenzied efforts to create a successful school experience. My husband and I spoke directly with teachers and support staff trying to identify social and academic challenges. I reached out to specialists in an effort to approach each day proactively. Still, my son was drowning.
Phone calls and letters became school meetings. Social challenges breed anxiety which exacerbated executive functioning areas like transitioning, organization, and emotional control. At our son’s Individualized Education Plan meeting we faced uncertainty with a new strategy for success. Having consulted with an advocate that specialized in assisting families of children with special needs we began to structure a plan of action to help my son. I requested tests that were new to my vocabulary; quickly learning what I did not know and becoming more confident asking for help. My requests created a lengthy period of detailed testing, the results of which began to inform my son’s teachers and therapists of hidden strengths as well as burdensome challenges.
Looking ahead, there are no easy answers or quick solutions. We begin with the A’s of education:
Assess. When in doubt never assume, always assess. Presumptions resulted in mismeasured assistance. Greater information and increased interaction with my son produced answers that were a product of experience. Old supports and new supports were adjusted in accordance with my son’s current needs. Coping strategies such as sensory based occupational therapies and the introduction of an aide created immediate success; calmer my son ceased unproductive behaviors based in anxiety.
Assign. Teachers and support staff each have unique roles. Once there is a plan each member of the team works in conjunction with the other members creating a machine in which success is based on collaborative efforts between school and home. I share an open line of communication between all members of my son’s team in which I understand the role of each individual and how I may facilitate assistance at home creating a cohesive strategy for success.
Assist. As soon as my son began failing, we reached out for assistance. An aide joined our team and became my son’s shadow. This individual provides him safe haven from unkindnesses as well as the structured academic supports he needs. The greater lesson for all of us is knowing when to seek help for struggles outside our expertise.
Accountability. When a child fails, parents and teachers are accountable. Within our team we all shoulder a responsibility to foster a safe and successful school experience. My son turned to all of the adults at home and school when he felt overwhelmed by social and academic challenges. Similarly, when my son struggled with various executive functioning skills I identified each area of concern as an opportunity for us to increase my son’s capabilities. Accountability means addressing concerns openly with intent to create improvement through a combination of greater consciousness and a plan of action.
Awareness. Rather than dismiss instances of bullying with apologies of ignorance or to expect my son to limit himself to a generic definition and expectations of “normalcy” we have begun to educate peers about special needs making children accountable for their words and actions. No longer is it acceptable to name call or bully a child for their differences. We need to educate children in a way that fosters compassion for diverse needs and celebrates individuality.
I don’t have all the answers. Each day we utilize a structure of support based in assessing challenges, assigning assistance, fostering accountability, and raising awareness to gift my son opportunities for independence and interpersonal success. We adapt.
editing our story
January 29, 2012 § 2 Comments
Writing allows me to capture snapshots of my life filtered through a uniquely intimate perspective. I endeavor to share my stories with genuineness and honesty, without remorse or regret. Occasionally I will retrieve a thought, tucking it tenderly aside for my eyes only; keeping my words rather than erasing an experience. This morning, feelings of gratitude for a successful school week mocked undercurrents of frustration with my son’s education in a recent post.
This past week has been a more joyful adventure in learning. My son has come out of his shell, the hallmarks of anger and sadness replaced with an easy smile and willingness to learn. His teachers are experiencing similar success during the school day. Gone is the chasm between my son’s needs and adults’ expectations, we have bridged the void with resources. Rather than retract an expression of genuine unhappiness and concerns for my son’s educational experiences, I thought I would take a moment to reflect on my words and emotions; charting our journey, sharing our story.
Let me begin at the middle of the beginning, a page out of a chapter of my son’s educational experience. A couple of weeks ago, on a day weighted with uncertainty, I gave voice to an internal conflict over my son’s education. For several months I have struggled watching my son curl into himself, sad and angry over frustrations within the boundaries of his school day; moments of unkindness from peers and difficulties processing his world independently. Each school day I felt like we were moving against a current too powerful to overcome and I sought calmer waters. I toyed with the notion of keeping my son home and personally assuming the responsibility of providing an individualized education. There was an immediate sense of peace in this possibility. Others could not say and do hurtful things that chipped away at my son’s spirit. I could work around my son’s needs rather than forcing him to navigate other’s needs. Coulds, maybes, and possibility built a wistful expectation of something better.
Even as I embraced the utopia of my mind’s eye, I was humbly aware of potential challenges. Academically my son would require similarly structured lessons and mandatory testing to demonstrate he was receiving an education that properly prepared him for a continuing education. Personally, I would have to restructure our family experience and overcome my organizational weaknesses to provide the education my son deserves. I would also need to supplement the social and speech therapies my son requires. The question remained, how do I ensure my son receives the education he deserves?
It is in this place of frustration and uncertainty that I explored a new, old possibility. Rather than move my son from the mainstream classroom whose work he can handle into a modified classroom or keeping him home and sacrificing the social lessons of a classroom, I revisited a resource we had hoped to have outgrown, the utilization of an aide. Every council warned against an aide at the middle school level, but my son was not processing his environment independently; academics were slipping and his increased anxiety had led to exaggerated episodes of socially awkward behavior deteriorating his relationship with peers.
With doubt and hope this past week we welcomed an aide to my son’s days, someone to help my son navigate the halls of middle school until he can read the unwritten social cues that would properly prompt him to an individual understanding of other’s expectations. We are fortunate in that the aide is a teacher that is familiar with my son from another classroom setting; someone who embraces my son as is while endeavoring to teach him that which he does not know. He is a translator, lending comprehension and modeling expectations.
My son’s anxiety has leveled; he has begun to interact more appropriately with peers and perform academic exercises with greater productivity. Our goal of independence remains, but for now I am grateful for the peace of mind that comes from knowing my son is not withdrawing from his education. Rather than delete expressions of frustration or uncertainty, I am sharing my hopes and doubts; documenting our experiences rather than editing our lives. Holding myself accountable to my son’s education by evaluating challenges with the same enthusiasm I celebrate moments of success.
strength & sight
January 24, 2012 § Leave a comment
On paths whose markers are sometimes blurry, rests answers to difficult days. Peace and comfort in unspoken moments wait on bended knees. I do not always find my way to the ground, but from my first moments as a mother I have whispered little prayers for strength and sight with the same ease I recite prayers of my youth; I ask for strength to walk among challenges and sight to find my way.
My earliest prayers for my son were laced with pleas for time. Holding him in the sterile setting of a Neonatal Intensive Care Unit my worries echoed loudly to the rhythm of various monitors. My heart could not speak over the sight of my child’s needs, I had to look at the strength of my son’s spirit to see his true size and allow his peaceful nature to lend me peace. Years later, I am still looking to his spirit to measure his need.
I wait for the sight of my son rounding the corner for home each afternoon to gauge his day. I review teachers’ messages littered with the day’s challenges to weigh difficulties, using each sharing as an opportunity to understand my son’s experiences. Yesterday, doubt and fear lingered between the words of one teacher’s concerns.
Underneath the weight of worry I bowed my head whispering words in search of strength to face what my son cannot hide from. I wondered at how to help and looked around me for what I could not see. Then, there came a message of hope. Someone that sees my son’s challenges, lends my son smiles, and displays an interest in his gifts will join our team of teachers. Someone new has come along to walk with us among our challenges.
With thanks I whispered words of gratitude that my son is not alone and that there is someone to help him find his way until he can walk independently with strength and sight.
dear sweet boy
December 14, 2011 § Leave a comment
I wish there were a way to gather you close and reassure you that this too shall pass. Unkindness and ignorance draw you deeper into yourself, but the gifts that others cannot yet see will create a life bigger than this moment. You will know love because you give love; you will know success because you do not let others define your boundaries; you will find peace because you know how to look within to find it. Of course, none of this lessens your struggles.
Your peers are not yet mature enough to appreciate your strengths. Your interests are fascinating, but even your father and I struggle to comprehend your theories. Some seem so far-fetched, we sometimes lose sight of your ability to embrace the impossible with an imagination unhindered by the suffocating constraints of can’t. I hope you continue to reach for the stars; when others place roadblocks, build ladders.
Here’s another secret: teachers are people. They begin each school year with a group of new faces and planned course material. You challenge your teachers each day to step outside their own perceptions drawing them into that same place of impossible possibility. Much like peers that do not understand, teachers too are trying to learn as they go. Mistakes are inevitable, patience is mandatory.
You already know your father and I are imperfect. We get frustrated, sad, overwhelmed too. Each night we sit beside you going through the motions of homework mindful of your challenges but insistent that you can do anything. The very hurdles that sometimes make you fall also teach you how to fly.
Your sister is your greatest friend, don’t roll your eyes. In Second Grade two classmates were pushing you and mocking you on the playground. Before I could speak your sister ran ahead and blocked you with her smaller form. She guards you when others are unkind; walks beside you trying to keep up; sometimes she gestures you ahead navigating the road ahead from behind. If you reach out your hand, you will find your sister’s waiting.
Life is not easy. I cannot promise you kindness from strangers, I can only remind you that your worth is not measured by others. Happiness is not something you can be given or I would wipe away all your heartache. Instead, I can promise you a shoulder to cry on and a place to sort your thoughts while you find your way. If you look up, you will see those that love you are always within reach.
Love, Mom
tinkering for troubles
November 26, 2011 § Leave a comment
Thanksgiving was quiet, the meal lent us substance, but our spirits were weighted. My son began to unravel, stirrings of sadness, frustration, and anger finding a voice; he stepped out of the solitary space of his thoughts and released tears of frustration. It was an exhausting exercise, to absorb his anger and sadness; sharing his pain while keeping mine bundled; demonstrating concern while processing the problem logically, looking for an opportunity to make sense and offer support.
Normally my son recedes into a game or music when he cannot calm himself. The holiday had established new boundaries that asked him to set aside individual entertainment for the company of family and friends. The effort to engage became overwhelming and the day culminated when we had to address a social faux pas. My son used a word that sounded like an inappropriate word. As I typically do, I pulled him aside for a quick teaching moment. Quickly my efforts to guide resulted in a difficult lesson. This was our exchange:
I need you to understand that using the word you used is inappropriate.
I didn’t use an inappropriate word.
Unfortunately the word you used sounds too close to another word, which is inappropriate, and you cannot use either word.
But I didn’t do anything wrong.
You aren’t in trouble, but using that words creates a problem and you will be seen as acting inappropriately.
(And this is where patience crumbled and recent injuries swelled absorbing the moment with tears and anger.)
I am not a bad kid! Why do bad kids get away with everything and I get in trouble for nothing?
Now we were at the heart of the harm. The greatest injuries often rest in a place of injustice. Life is full of disappointment hidden beneath good intentions. My son in his flurry of anger revealed a secondary harm, he felt the burden of discontent over life’s inconsistencies. I had become part of the imbalance of fairness. I couldn’t broaden the scope of his perspective to see that the separate events were not equal, because my son was lost to the space between hurts.
He walked away from me and found comfort in the easy company of a friend. Under the patient watch of his friend, my son folded himself into a compact crouched pose and began tinkering inside an unused oven in our hosts’ basement. In this endeavor he was peaceful. I couldn’t make sense of the transition. It was as if a switch had been flipped and the negative energy had slipped away like an ill-fitting sheath. Tinkering, my son began to relax and resume a more even-tempered spirit; eyes bright with curiosity.
I note this because I felt like one learning a secret and wondered if great inventors or adventurers felt the same sense of awe when uncovering new knowledge. I wanted to scribble against the sky:
For my son to unwind, he must engage physically and mentally in an activity transferring his energy into something mechanical.
A wave of hope washed over me. My son had revealed a source of self soothing that I can try to duplicate and facilitate in different environments. It is another path on an amazing journey that I have only begun to understand.
to my husband
November 6, 2011 § Leave a comment
Lately I am reminded of our earliest days with our son. My heart recalls the impossible goodbyes in the Neonatal Intensive Care Unit, immediately lonely for our son’s company and worried about his well-being in our absence. Logically I understood the hospital was trained to care for our son’s needs, but my heart could not fathom leaving him each day. With all my doubts of late, an old question haunts me: Will he be okay?
I carry a special memory of you that I call on when uncertain or overwhelmed by a new challenge with our son. It was the first time we were allowed to hold our son. He was impossibly tiny and covered in a tangle of tubes, you were standing closest while I absorbed the sight of him. In a gesture filled with limitless love, you stepped aside and let me hold our son first. It would have been easy for you to gather him to you for a moment and then deposit him in my arms, but instead you let me hold him and I gathered him close like a salve to a tender ache. In that moment I was whole and at peace with the world, joyful. You stood patently nearby, proud and eager without complaint.
Your quiet strength and generosity allow me the unique experience of mothering from a place of authenticity. Thank you for giving me so much without asking. As I struggle to process my feelings and thoughts, be patient still. I know you are nearby, waiting without complaint.
scribblechic 