hope & help
May 22, 2012 § Leave a comment
I have been here before; the emotional landscape familiar. Uncertain, hopeful, nervous. This week I will gather with the same team of teachers, therapists, and administrators that accompanied me on my son’s journey through elementary school to address nagging uncertainties concerning my daughter’s challenges in the classroom setting.
Where some rush to label needs, I have cautiously tiptoed the terrain silently evaluating my daughter’s strengths and difficulties in an effort to measure need. Bright and compassionate, resilient and determined I celebrate her character and growth. Young for her class and a little sister to an older sibling with special needs I gauged maturity and environment against my concerns.
As time has passed my daughter’s frustration has begun to rob her of her easy smile and confidence. Where I measure her growth against independent efforts, she has begun measuring her failure against others’ success. Once eager to line up among friends and begin the day, my daughter has begun to hide beneath her blanket and drag her feet preparing for school. This is where I cannot fail.
As a student of life I cannot bear the thought that my daughter could resist an opportunity to learn or that school has become a place marred by failure rather than a safe haven for ideas and curiosity. This moment of self-doubt must evolve into a new lesson in resilience. Tomorrow I will bring this hope into action: that we partner between home and school to create a place of possibility and nurture the spirit of education that my daughter will once again reach for the stars without first measuring the impossible distance from a place grounded in doubt.
open mind, full heart
April 25, 2012 § 4 Comments
My day today began with a meeting, a discussion with a member of my daughter’s educational team who shares a special history with me. Six years ago we met across a large table in a formal meeting where several therapists and educators evaluated my son’s educational needs. This morning we met casually, seated at a much smaller table perched in child size chairs to discuss my daughter’s educational needs. We could have just as easily been old friends meeting for coffee and sharing stories about our children; her smile is a source of encouragement and humor.
Recently I watched a friend begin her own journey into the language of special needs in an elementary school setting. Her child’s challenges differ from my children’s, but my advice is simple: begin with an open mind. Even in moments of uncertainty and frustration, I try to open my mind to explore different perspectives. I listen, ask questions, and research to weigh my decisions. I also remember each of the professionals that work with my children have experience that lends me a wealth of knowledge.
I left the meeting today aware of a mutual respect and sense of friendship. The community of teachers, therapists, and administrators that I have come to know over the years have become an extension of our family. They offer kindness and guidance during difficult moments with the same genuine appreciation they applaud each of my children’s accomplishments. It is a partnership that extends beyond polite exchanges and paperwork. I see the faces of mothers and fathers that understand my role as a parent. I see friends eager to share a resource or a smile. In return I meet them with an open mind, ready to advocate for my children, and grateful for professionals passionate about their work.
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.
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.
school & home
January 10, 2012 § Leave a comment
The other day I had a profound moment of uncertain, certainty. I carried my thoughts carefully tucked away in my mind, weighing if I should give them a voice. At day’s end, the house quiet, I told my husband I needed him to listen without questioning my sanity or nudging me into action.
With a deep breath and full heart, I said: I want to teach our son from home. Maybe. My husband, whatever his initial thoughts, honored my wish and kept silent. I unraveled my concerns and hopes measuring them each against possibility. The core truth: I’m not sure a traditional school setting is right for our son.
Earlier the same evening I had sifted through old pictures of both children with my daughter, noting the happy dimpled little boy of days gone by. In each picture my son was peaceful, whole. There were no worried lines on his face, no sadness in his eyes. Most school days I cannot see his smile and his spirit feels buried beneath sadness and anger. An eternally curious child he used to beg to attend school, eager to learn and make friends. Now he hides behind individual interests, his footsteps heavy with resistance as he finds his way to school. I paused in sorrow wondering, are we suffocating the joy from learning?
I still do not have an answer. I have new questions. Would I be facilitating my son’s escape from a traditional school setting that might better prepare him for life? Am I capable of providing a balanced, structured education that would prepare my son for a limitless future? Do I then keep my daughter home? Does she have the same option as her brother? Where do I begin and how do I know if it is the right fit for our family? What if I become ill, we move, the Earth slips off its axis; what then? What next?
This is what I know. Both of my children are fortunate to have teachers who are passionate about teaching and compassionate when faced with challenges, who see my children as individuals and communicate openly with me. Of course, we also live in a competitive environment where our children are measured endlessly against themselves, classmates, and nameless others. Teachers are forced to teach in preparation for tests and not all subjects are weighted equally. Our school days are short and our school years fragmented with oddly spaced vacations. There are gaps in my children’s education that I as their mother am obligated to fill; pockets of potential, natural resources overlooked.
I wonder if there is a way to draft a lifelong education plan that truly inspires independent learners. Is there a way to nurture learning and educate from home in celebration of the joy of learning while preparing our children to become contributing members of society? Do I continue to work with the school, outlining my son’s unique needs and partnering with his teachers to navigate this experience together? If my daughter is happy, is contentment acceptable or do I insist she be inspired?
I cast my worries to the wind and wonder what answers I might find.
next
November 12, 2011 § Leave a comment
This small word has been chasing tirelessly though my thoughts all week. I recently became aware my son needs greater support at school. The realization and acceptance of new challenges has brought into my days both uncertainty and hope for what comes next.
I say uncertain; not of my son, of myself. I am more comfortable a safe distance outside conflict, now I must sit inside conflict. Seeking the council of others who have had to ask for support in the space of middle school, I have been forewarned of potential resistance and advised to accept nothing less than excellence from administrators, educators, and therapists. My son’s education rests on these moments of possibility, his potential for success in school rests on my success in preliminary meetings as we define needs and outline support.
Guiding me through piles of paperwork is an advocate with experience aiding families of children on the Autism Spectrum in the heavily coded language of Individual Education Plans. Yesterday I received a new e-mail walking me through my next meeting. I hold onto this woman’s words like a life line, aware I will soon sit at another conference table faced with the responsibility of speaking up in a space I feel uncertain and where the stakes could not be higher.
I will ask for evaluations I did not previously know my son needed in a language that feels new on my tongue. Guilt over my previous ignorance breeds shame. To build confidence I have begun researching the evaluations I must ask for, studying what I do not understand. I carry with me new knowledge and a standard of accountability based in awareness. I draw strength from another’s words:
When you know better you do better. ~ Maya Angelou
Hope for a better future and knowledge lead me forward. Consciousness opens the door, but intention guides me into a place of possibility.
*It is important to note that while this blog represents my perspective, my husband accompanies me on this journey. Due to the early morning scheduling of our next meeting, I will attend the meeting while my husband prepares our children for school. It is a decision we made together. I speak with one voice, but I am mindful that my husband is my partner in this ongoing endeavor.
comfortably unsettled
September 20, 2011 § Leave a comment
Sometimes a little discomfort creates moments of greatness. Sitting among parents and educators gathered together to listen to a speaker on the subject of resilience, I quietly encountered emotions unexpressed that had lain dormant without a voice and hidden behind good intentions. Fear, doubt, uncertainty, hope. Am I parenting properly? In teaching resilience, mistakes are mandatory.
Education is a subject of importance to each parent invested in their child’s future. I have found myself frequently looking outside the box for ways to facilitate my children’s educational experience in the hope that they will gather the tools and life skills to create their own future. The greater lessons are taught outside of class, unprinted in text books.
I could outline for you the schools we have chosen and the teaching styles we have explored but I think there is something to be said for my children’s raw materials. Bottom line: I am blessed with two curious children that love to explore their world, have faith that they can approach new experiences with ability, and a willingness to create with spare parts.
My children’s greatest challenge was me. I am a grown-up stereotypical “good girl” with an eagerness to please and a need to be accepted. Luckily my spunky children are comfortable with an uncomfortable mother. They are secure in their imperfections and aware of their needs and limits. I have become comfortable with imperfect grades, unfinished homework, and simpler schedules; putting my children’s needs before other people’s standards of excellence.
In our house we do our best, work hard, sleep well, relax, play and have family time. We also argue, fighting for what we believe in. We apologize for causing hurt and do not apologize for our differences.
Today I listened to someone tell me we will be okay and I felt immeasurable relief. I hadn’t realized I was holding my breath. This job of parenting is impossibly imperfect and perfectly rewarding. We do our best and fight for what we believe in. We make mistakes and carry on.
scribblechic 