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.
accidental friendships
January 20, 2013 § 6 Comments
My experiences as a mother are a collection of accidental friendships, unique individuals who lend compassion and acceptance; knowledge and inspiration. Perched quietly on a park bench, between grocery store aisles, poolside on summer afternoons, and in obscure unpredictable everyday locations these women have become companions who walk beside me through my most difficult days with a silent strength and warmth that fortifies my spirit.
Just as I do not use my children’s names in this space as a gesture of respect for their privacy, I also endeavor to tell their stories without labels. Both of my children have special needs that complicate their days while simultaneously providing endless opportunities for me to experience their world with the blessing of unique perspectives.
Before these small wonders made me a mother, I existed in the margins of my own life; lost to uncertainty and individual interests. I curled myself into invisible corners without daring to move into the forefront. Then with an all-consuming love that only motherhood could provide, I slowly learned to step into the noisy chaos of the world. This adventure into vulnerability and need has unlocked the well guarded spaces of my heart and invited accidental friends into my life.
Recently a new acquaintance, a reflection of myself during the earliest days of diagnoses and doubt, has gifted me knowing and insight in unplanned conversations. We lose track of time revisiting the past and unraveling shared hopes and fears that accompany our journey as mothers; the hesitation to relax into peacefulness for fear we will tempt fate to disrupt harmony, self-doubt and uncertainty over contradictory treatments, even practical pieces of our days often foreign to family members are common between us.
When a conversation is interrupted by muffled ringtones each of us reaches blindly with well-practiced efficiency to check our phones, the early signs of worry hiding in the corners of our smiles. There are those who know my experiences as therapists and those who are witness to my story through friendship, but this woman whose smile hides so many of the same fears is a beautiful accident of fate.
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.
patience & persistence
January 17, 2012 § 1 Comment
If I could, I would write these two words in ribbon and tie them to my day, a beautiful reminder in moments of doubt and uncertainty that I must move mindfully forward with patience and persistence as I wade through preliminary procedures for my son’s Individual Education Plan. For those that do not know, my son is diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified an Autism Spectrum Disorder and Attention Deficit Hyperactivity Disorder. This year my son started Middle School and as his peers settled into the routine of this new milestone, my son unraveled. Months later my husband and I are still searching for answers and guidance.
I have requested a battery of tests to identify my son’s abilities and challenges in an effort to insure he receives the education he deserves. My son has grown tired of tests, my husband and I still have little information to inform our decisions. Like the proverbial needle in the haystack we keep striking blindly into our days reaching out in search of answers, hoping to grasp the yet unattainable.
While we wait on test results, I brainstorm; I read and research various sources looking for pieces of my son in text books to help me understand the simple truths that complicate his days. Interpreting social situations is painfully frustrating. Dividing tasks into manageable steps that can be systematically followed in a timely fashion to complete an assignment requires assistance. My son struggles to stay on task, his mind cluttered with ideas that tug at his attention; light, sound, textures invite him to hide or alternately explore. These truths are ever present and often unacknowledged.
If you were to meet my son, you would probably find him endearingly quirky. He works to make eye contact and contort his face into appropriate responses. At times he will stand in another’s personal space, speak excitedly in run on sentences about subjects beyond his age, punctuating his thoughts with misplaced humor. In those moments you may wonder at his maturity or quietly question if there is something else informing his behavior. My son works daily to navigate unspoken social cues and to meet countless external expectations. I hope a day will come when others will meet him halfway; attempting to understand and appreciate his hidden gifts. Loyal, determined, kind, and curious he is a source of immeasurable joy and inspiration. A new day is on the horizon and I am filled with hope for his future.
My son’s school is organizing an event to educate students about invisible handicaps. My son has offered to lend his voice to the day in hopes of raising consciousness for and appreciation of differences. It will be his first formal act of advocacy for himself and others like him. As he gathers his thoughts, I wonder at the words he will share and how they will be received.
It is a year of growing pains, trying to adapt to change while challenging others’ expectations daily; creating friendships and partnerships in a new school setting. Patiently and persistently we move forward towards answers and acceptance.
love and truths
May 4, 2011 § Leave a comment
My daughter is ever mindful of her big brother’s movement through the day. From the beginning, she has followed him in the shadows of his distractions, monitoring his activities and interests with love and admiration. The comfortable span of four years between them, there has been little cause for comparison, until now. More socially attune to the world around her, she has begun to lead her big brother creating a new experience between them.
It began with physical cues. Her brother lost in his own thoughts, she would redirect him with a touch on his shoulder or the small of his back, naturally guiding him into a moment. Initially she seemed to respond to this need with joy; happily stepping forward and finding a place by her brother’s side.
Recently, my daughter’s voice filled with sadness, she asked me why her brother was born different. She catalogued the spaces between them and I felt my world tilt off course with the weight of consciousness underlying her questions.
As their mother, my heart ached for the answers. I found my way through a difficult language of love as I acknowledged my daughter’s needs and my son’s truths. We are all imperfect and in the understanding we sometimes find ourselves called to place our own needs aside in an act of love. I realized late, my daughter had set aside needs and was placing them carefully in my hands. Together we are filling in the spaces between our differences and caring for one another’s needs with love and truths.
normal needs
April 25, 2011 § Leave a comment
When my son was seven, he gifted me a moment of insight that guides me as his mother. With wisdom and self-awareness beyond his years, he said to me: I know that I’m different and I like who I am, but I don’t like it when other people make me feel different. This moment wakes with me each day.
His sharing came during a difficult time. A year into a diagnosis that had begun to help my husband and I better understand our son’s various behaviors and needs, we were finding our footing while our son was struggling to find his. Social challenges made school days difficult, our son navigated the expectations of his teachers as mindfully as he absorbed the weight of unkind jests by his peers. Our son was looking for belonging and acceptance without conformity.
In moments of adversity I frequently return to a personal truth, special needs are extraordinarily normal. Virtues like patience, kindness, and tolerance should not be reserved for special conditions or occasions, they should be the standard by which we live every day. From this place we are all equal and anything is possible, our differences as normal as our needs.
scribblechic 