happy accidents
April 14, 2012 § 2 Comments
Yesterday was scattered with serendipitous moments of friendship and I pause this morning to reflect on the power of a conversation, a genuine moment of stillness that allows us to connect with another soul over a simple greeting. Like an invisible thread fate stitches stories with patchwork personalities; people who share similar journeys, others who inspire action, some who share passion. People pass through my days and I marvel at the blessing of their stories.
In the moments just before school began, watching my daughter walk towards the front doors yesterday, I turned and paused to say hello to a school aide only to find myself quickly wrapped in an intimate conversation centered in the unique challenges we share as mothers of daughters with a common special need that complicates school days. A simple greeting had gifted me a moment of connection to a woman who before that conversation I did not know. Our stories are unique, but the shared spaces inspire an awareness that lends both strength and comfort, hope and celebration.
I was still reflecting on my good fortune when I crossed paths an hour later with a woman I had lost touch with amid the unceremonious busyness of school and home. I met this woman in the chaotic space of preschool activities, sharing conversations on motherhood over park playdates with our children. Between the aisles of our checkout lanes and over her shopping cart we caught up and made new promises to share pieces of our summer vacation at a park. Again, a simple greeting had gifted me the company of a friend; a woman who accompanies me on my journey through motherhood.
These happy accidents of friendship occur with amusing frequency. At the local YMCA on a climbing wall, the outdoor pool under a summer sun, on airplanes, at a local bakery over an order of cookies; in unexpectedly common places I find myself in the company of compassion born of experience. Mothers and children who share a journey similar to my family’s find their way into our lives with a predictability that has not escaped me. Today, I celebrate years of conversations and friendships born of a genuine, unhurried hello.
weeding flowers
April 2, 2012 § Leave a comment
Dandelions are popping up inside my home, generous bouquets bundled with love.
First my son appeared at our door having collected two handfuls between the bus stop and home. He eagerly extended one yellow bundle for me before asking if he might deliver the other to a friend. He preserved mine proudly in a small glass container at the center of my kitchen island, but not before he created a video documentary of one particularly beautiful dandelion on film.
Less than an hour later my daughter lamented our tragic landscape, void of the lovely yellow blossoms so generously sprinkled across our neighbors’ lawns. She embarked on a passionate journey to collect stems of sunshine to accent my store-bought, cut flowers indoors.
My daughter found an absence of sunshine in a sea of green and my son uncovered something extraordinary in a bouquet of sameness. I am weeding my definition of beauty and giving thanks for the blessing of a dandelion.
constructive criticism
March 8, 2012 § 2 Comments
Teachers and specialists have assured me it is quite normal for a sibling of a child with special needs to become a miniature caregiver. In this respect my daughter is exceptionally normal. From the time she was born I would follow behind my son trying to help facilitate social experiences. I would watch to note his strengths and identify areas of concern that we might later role play or work through; uncomfortable dialogue and mannerisms that created conflict among peers. My daughter grew naturally from a witness to these exchanges into a tiny tutor in the subject of social behavior; actively identifying and demonstrating proper behavior in different settings.
Some days my daughter will guide her big brother with one hand on the small of his back, speaking quietly just behind him. She cues expectations naturally, predicting and translating his environment. She does this with love and frustration. At times she wishes him her equal and resents the imbalance her older brother’s needs create. Other times she is his greatest champion, defending him against unkindness and following in his shadow marveling at his interests.
My daughter has her own needs that have gifted her unique experiences outside the norm among peers. Sensitive and aware she aligns herself in the company of children sometimes marginalized and stands true in her beliefs in the face of other’s opinions. Recently she lent me constructive criticism for my own social behavior.
It began when another parent initiated a conversation outside my daughter’s school. I could not wriggle free of the exchange and found myself taking hurried steps toward the back of the building where my daughter meets me daily. I was late and she was angry. Frustrated by the distraction my daughter offered me a social script. She instructed me that in moments when I cannot be rude and I have a commitment to say: I’m sorry but my daughter is waiting for me. I need to go. She offered me the solution so naturally I had to remind myself to answer. Quickly I acknowledged the polite and appropriate language as well as the gentle reminder that she rightfully wants to be my first priority at the end of her school day. Then I pulled my daughter into a hug and celebrated her ability to recognize a problem, offer a solution, and share her feelings confidently. Internally I marveled at how quickly I had become her student.
It was a small moment on the outside, but my daughter’s ability to help others navigate the unspoken social rules that complicate simple exchanges is extraordinary. I pause here to admire the way in which she guides us all with a gentle heart and a quiet certainty, kindness and conviction.
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.
holding a moonbeam
February 4, 2012 § Leave a comment
My daughter sings an Off-Off-Broadway interpretation of “Do-Re-Mi” intoning Julie Andrews timeless and beloved character Maria while playing independently in her room. I in turn hum a cheerfully content “How Do You Solve a Problem Like Maria,” the lyrical phrases capturing pieces of my daughter’s spirit in a lovely melody.
She climbs a tree and scrapes her knee. Her dress has got a tear. I have watched my little girl grow from pleading to be hoisted onto a safe tree branch with toddler grunts arms reaching toward the sky to balancing herself in rain boots and princess costumes, tearing her gown while smiling proudly from her perch in our climbing tree. She embraces adventure as eagerly as she slips into costumes; moving with intention and grace all the while unhindered by dirt or scrapes.
She’d out pester any pest. Drive a hornet from its nest. I can imagine her poking a beehive with the same spirited curiosity that inspired willful tugging on puppy dog ears; mischievously and fearlessly testing boundaries. Still, her penitence is real. For all my daughter’s headstrong antics it must be said she does not take any joy from causing harm and her errors are met with genuine tears of remorse. Her heart is as immeasurable as her imagination.
She’s always late for everything. Happily distracted with her own pursuits she is often lost to the boundaries of time, stretching play to capture every drop of sunshine from her day. I can easily imagine her dancing on a hilltop mindless of the passing hours while scavenging for fun and celebrating every miracle of nature.
Many a thing you know you’d like tell her. Many a thing she ought to understand. But how do you make her stay and listen to all you say? Looking into my daughter’s eyes I catch fleeting moments of undivided attention only to have it swept away with the impossibleness of keeping a wave upon the sand. Keeping her still is like trying to catch a cloud and pin it down.
When I’m with her I’m confused. Out of focus and bemused and I never know exactly where I am. Unpredictable as weather, she’s as flighty as a feather.She is gentle, she is wild, she’s a riddle, she’s a child.
My little girl is the heart song that fills my day and I am grateful for the sound of her music; notes of independence and curiosity, creativity and make believe. She’s a problem I do not wish to solve; a moonbeam that shines too brightly to hold within my hand.
finders keepers
January 31, 2012 § 3 Comments
If my son has a singular object that best captures his quiet innocence, then my daughter has an eclectic collection of tiny treasures that capture her whimsical and creative spirit. She finds immeasurable joy in tiny pieces; keeping them in small containers, stuffed in corners, stowed away in drawers, and carried from here to there.
As a toddler, my daughter wobbled through the house clutching small figurines tightly for safekeeping. Later she began packing them into bags and boxes, toting them everywhere; doll accessories, pendants from necklaces, Lego pieces, art supplies, family photographs, and miscellaneous objects scavenged on everyday expeditions for treasure. She creates with them, gifts them, unravels stories with them, and ties memories to them.
There are moments I believe she leaves behind as much as she gathers, sprinkling her chaos with charm and cheer. I look upon my little girl’s company of clutter with an acceptance of her fun loving appreciation for little things in much the same way I marvel at her big brother’s innocent affection for a childhood toy. I find little pieces of their personalities keeping them centered with individual expressions of self. Finding their way and keeping true to themselves.
inanimate friendships
January 30, 2012 § Leave a comment
A beige, floppy eared, terry cloth bunny arrived shortly after my son’s birth wrapped in ribbon and celebratory well wishes from a family friend. I do not remember when my son first reached for the gift and I cannot recall a day without the treasured companion. My son’s shadow slumbers each evening in the folds of his bed covers beneath long limbs scattered in sleep.
The bunny is worn, the nose rubbed flat with toddler kisses. Tiny black eyes peer unblinking, a witness to our everyday lives. I wonder how many confidences his long, clumsy ears have been entrusted with and how many tears are tucked inside his stuffing. I can only imagine the stories the carefully stitched lips could share.
Often I find the limp limbs have traveled into my daughter’s room; she hides the tiny form, mischievously pleased by her big brother’s anxious endeavor to find the borrowed friend. In a world filled with change simple constants reassure him.
The bunny’s name has evolved into an endearment. The familiar figure represents over a decade of bedtime stories and goodnight kisses; memories gathered for safekeeping in a child’s toy.
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.
scribblechic 