save me a space
January 16, 2017 § 8 Comments
It’s the smallest request, to hold a space for someone to belong. There is perhaps no greater kindness than to offer such generosity of acceptance to one another; no greater space than home in which to teach belonging except school. This is the heartache I have been sounding out for over a decade as I help my children navigate the broken spaces of their education.
I have written often these past years of academic challenges and the emotional harm of exclusion, but these themes were offered new insight last November through an online parenting course offered by Brené Brown. I’ve long admired her research on shame, but this course offered a discussion on belonging and fitting in that gave me a new language for contextualizing the challenges I have encountered as a mother raising special needs children.
I posed this question (specific to my son) towards the end of the curriculum:
How do we address subjects of shame and belonging when raising children with special needs? My sixteen year old boy (son) on the Autism Spectrum cries openly, fails colorfully and speaks genuinely, he has been made to feel “other” for these behaviors/qualities we celebrate and cultivate in adults.
In an effort to keep my question concise, I edited the following from my submission to the live Q&A session:
He has given his younger sister a model of masculinity I think is both rare and exceptional; his emotions and vulnerability, the brave and authentic way he navigates mixed messages underscores a deficit in social norms.
Maybe one day there will be a parenting class to discuss the significance of belonging over fitting in as we look to inclusive classrooms to model empathy and diversity.
Privately, in my personal notes, I mused:
I’ve also been thinking about how we categorize children, offering preferential treatment that harks back to an unhealthy selection mentality; students who are deemed gifted are granted an exclusivity of privileged resources that in turn limit the potential of a larger population with an assumption of inequality.
This last wondering was specific to my daughter’s experience, but inclusive of so many misunderstood, stereotyped children. Those students ranked by generic test scores that exclude intelligence we cannot gauge in standard testing, but whose grit and resilience have made them stronger learners for their personal challenges. What might these children become if offered courses that encourage and inspire new passions?
I want to pause here to acknowledge the obvious deficit of editing. I debated tidying these thoughts into something beautiful, but there is an uncomfortable truth in the mess that I want to preserve for the integrity of my own experience. I am publishing them today to move them from the stagnancy of my drafts to better own them as an essential part of my story.
I considered offering a shorthand of harmful past experiences in the interest of identifying a pattern of exclusion that illuminate the essence of fitting in over belonging, but I want to speak instead to the rare moments of extraordinary kindness – of invitations to belonging.
For my son it was one teacher offering a safe place where others could not push, mock, tease or taunt for one period each day of his middle school career. During those three years she provided him his first experience of belonging, in which he was allowed to invite friends and breathe a sense of safety and acceptance not available outside her walls.
For my daughter, the experience came last year as a result of an administrative oversight after our move when she was allowed to perform academically by assumption of ability over predetermined restrictions. Her school saved her seat when paperwork dictated they shuffle her into another space. It was only after our daughter was offered an opportunity to thrive outside the limits of labels that we watched her excel along a trajectory of her own determination that exceeded expectations.
This is the truer gift of parenting children with special needs, the way in which we reframe understanding by potential; looking past the unspoken rules of fitting into social scripts for success to a more wholehearted place of belonging just as we are. It demands championing learning over testing, character over accomplishment; teaching children to save a space for one another with acceptance and appreciation.
I think we are on the verge of something remarkable and I’m saving a space for all of us to consider the difference between fitting in and belonging.
raising sheldon
January 26, 2016 § 8 Comments
If you have a child on the Autism Spectrum you are probably pretty comfortable with unexpected statements – some call them blurts.
I don’t love the word blurt, it sounds more like a bodily function and implies an absence of control that interrupts the peace leaving a foul impression.
Around our home unexpected statements are what keeps us on our toes, they create interesting tangents and spontaneous laughter. I’ve come to appreciate the honesty of my son’s speech and the innocence of his errors.
When he was little, my son would spout extravagant facts he’d memorized from the mountains of books that littered his days. I spent a decent amount of time verifying information with my own research so that I could participate in his interests.
This same natural ability created an entire vocabulary of funny one-liners from favorite books and movies. My son and husband could hold an entire conversation with direct quotes taken out of context.
Most days my son’s comedic timing and memory for details is a gift. Some days it’s a burden.
This week a store manager who my son’s school partnered with for practical exercises in social skill building determined it was too much work after my son commented on a customer’s groceries.
If you’re wondering what he said, I’m not telling. I don’t want to shame my son, the customer, or the store manager.
What he said, specifically, isn’t the issue. Some of his statements would make you laugh and others would make you scratch your head. There was one statement that I could conceive was mildly offensive, but most of them were simply misplaced.
I wish I could explain to the manager that my son’s blurts are more exaggerated when he’s nervous; that he will work over-time, verbally, to impress a stranger or make them laugh. Another week and the anxiety might have eased, reducing the instance of unfortunate efforts at humor.
I understand, I do. Unexpected statements present challenges, but they are also opportunities.
What might have happened if the manager stood up for the teenage boy with special needs and communicated to his customer and community that “we’re working on it.” What an awesome message one business might have made to a population of children, parents, and strangers of tolerance and empathy.
The last business did.
We’re going to be ok. Actually, we already are, but I’m sad for the store and it’s customers that they didn’t model the commitment their partnership with special needs families implies. Relationships require an investment in one another, work.
My son isn’t Sheldon Cooper, there is no laugh track to his impressive library of memorized facts or social fumbles. In the real world his embarrassments are not so easily written off and the laughter isn’t always kind.
I spend a lot of time talking to my son about others’ expectations, he’s spent years navigating social norms with the forced attention of a second language; to understand and connect in a world that does not always conform to his expectations.
This morning I wanted to speak on behalf of my son, hoping that maybe someone else might consider an unexpected statement an opportunity to exercise a different perspective and, maybe, a little patience.
to my son
November 5, 2015 § Leave a comment
You were so casual as you left, playful and confident. It’s a big day, your first job interview; a lucky opportunity to use your experiences as a special needs child as a service to other children with diverse needs. Ironically, this experience places you in a position of support in an athletic setting, a space where, both academically and extracurricularly, coaches and peers were consistently missing the resources to provide an inclusive experience for you.
That’s not to say there weren’t a few exceptional individuals along the way; a student teacher who invited a personal connection during gym and a climbing instructor who challenged your natural abilities. There was the gym teacher and aide who muscled through the misery of running with an appreciation for your resilience and the Tae Kwon Do teacher who recognized inner strength in form.
Unfortunately these individuals came long after uninvested little league coaches and unkind elementary games. Choruses of negative directives from uneducated coaches and unsportsmanly misbehavior from peers signaled an exclusivity from the joy of sports. Lessons in team work and community were really politically correct statements of inclusivity; words without the substance of actions.
These early disappointments and the encouragement of those rare individuals who would later challenge previous experiences created a unique spectrum of understanding; an empathetic awareness for the value of each individual no matter their natural talents or need. This new opportunity allows you the work of modeling a truer practice of teamwork. It is a rare and remarkable invitation to use personal experience to foster positive change for yourself and others.
Sometimes people get lost in disappointment, but you have been determinedly enthusiastic about improving the space you consume. Your confidence in self and others has created a legacy of self-respect and love that informs an expectation of kindness in the game of life and the spirit of play.
I’m proud of you, but also excited for you. I hope you learn as much as you teach.
Love, Mom
what I knew, when
September 16, 2015 § Leave a comment
Today, in a wonderfully open conversation with a high school psychologist, I was asked when I first knew that something was wrong with my now fifteen year old son.
Here’s the thing: I didn’t.
Other’s asked me questions, a few raised concerns, but I was never worried. So many of the behaviors that were red flags to strangers, were my only experience of normal.
It wasn’t until the summer between Kindergarten and First Grade that my husband and I understood there was an explanation for some of the inconsistencies between our son and his peers. We assimilated the new information into our language, recognizing our son would need to master certain challenges to better navigate his educational experience successfully, but we never saw our son with a lens other than love.
I didn’t know ten years ago that something was wrong. All these years later I still think it is more likely that well-intentioned adults are misguided in their assumptions than my son is in his behavior.
The young man who sometimes struggles with spontaneous dancing and poorly timed sarcasm, who rushes to share his ideas and forgets to plan ahead is also empathetic and loyal; he is fearless and uninhibited in his curiosity and passion.
Someone once told me something was wrong. Years after my son’s diagnosis I know that the greater wrong would be to remake a child into someone else’s idea of normal.
What did I know, when?
I know that if we speak of differences as problems, trouble, something to be fixed or devalued we lose sight of the complicated blessings of imperfect experiences. From the beginning I knew my son only as himself, someone who makes my days better for the differences that are our normal.
I think it is important to note that in response to my answer the school psychologist not only respected my perspective, but agreed. This mindset of appreciation over tolerance is essential, in my opinion, to valuing differences as abilities over handicaps.
growing against the grain
June 13, 2015 § 2 Comments
Tomorrow our son will attend his first high school class without support. This is an exaggeration of course, he is not walking abandoned toward change. His teacher is as aware of his needs as he is of this newfound independence. We are, rather, moving against the familiar with a new experience of change. It is the way we accommodate opportunity.
For years our son has had the company of a personal aide in the context of his academic days. He has not yet matured into self sustained independence; still he is fiercely, passionately, willfully independent in his sense of self. Our experience is ever changing, consistently inconsistent; needs and ability contorting themselves into footholds of growth.
We do not succeed independent of difficult challenges. Neither are we alone in our accomplishments.
These past nine years we have evolved into an assumption of compromise and expectation of progress as we partner with professionals who meet us with anxious questions and eager uncertainty. There have been moments of crisis and conflict born of lessons in the disparity between professional training and necessary accommodations in anticipation of the spectrum of needs that inform the many experiences of special needs in mainstream classrooms.
There have also been humbling lessons in grace as we partner with rare souls who share our responsibility to our son’s education; learning alongside one another as we go.
I have come to understand that IEPs do little to guarantee resources and that kindness is a greater predictor of success. The labels that inform need also bind us to assumptions that are sometimes limiting in their generic untruths. We modify expectations without compromising our dreams.
This new moment is an anticipated uncertainty, one that finds me holding my breath, heart on my sleeve. Hope bound a little too tightly around so many variables I cannot control. In this experience I am exceptionally average, a mother with universal worries in an intimate experience of vulnerability.
So I try to gather words and a tender posture of faith, something that looks like confidence and feels like false bravado.
one
November 22, 2014 § 2 Comments
We began our son’s high school experience with a clumsy, unapologetically honest introduction. As a student on the autism spectrum he is a contradiction of expectations and assumptions; his needs are misread as predictably as his ability to perform consistently. I walk a delicate balance, informing teachers and support staff of the invisible needs that shadow my son’s experiences and permitting him greater autonomy to speak for himself.
Somewhere in the language of advocating for my child as a student with special needs, emotion becomes muddled with words weighted in clinical knowledge that sometimes consumes my vocabulary. Years of navigating a second language of need has created a sterile dialogue that suffocates the lightness of my love with terms that cannot contain the colors of my child’s personality.
Each year I hope for someone who speaks the same language of care, but celebrates the complicated prism of my child’s spectrum of light.
Yesterday the person I had been looking for stepped more clearly into our path, speaking the language of our need with a smile. More importantly, he volunteered to partner with the spectrum of teachers whose worries are as diverse as their personalities to help inform my son’s assumptions with practical exercises in deconstructing the social language of his days as they create a new path toward greater independence.
Within this singular exchange I was able to reshape my words from an armor of advocacy to a partnership of possibility; infusing the language of need with a joyful celebration of my child’s spirit. One person has changed the entire landscape of our experience, bridging fear with hope.
On this, the eve of our Thanksgiving holiday, I am counting my many blessings and celebrating the power of one.
waiting on change
November 16, 2014 § 5 Comments
The language of my son’s academic/emotional needs are largely universal; to be accepted as an individual and included as an essential member of a greater whole. Most of my messages of advocacy for special needs are inclusive, suggestions of compromise that enhance the collective experience of individual classrooms. However, in order to make requests I first spend a burdensome energy validating need; filtering assumptions in a way that informs a clearer image of one child against a larger, more diverse, experience.
It is a seasonal cycle, educating educators and building a team. Some will come to identify my child as a cluster of initials. A rare soul will come to see the child behind the mask of need; these are our gentle warriors, the courageous few who blaze a trail of acceptance that creates change for a new population of students with special needs in a mainstream environment.
This month I welcomed anticipated challenges and began informing the error of assumptions. I was tired and tender, the burden of my responsibility chasing old doubts with new fears. This pressure curves against my thoughts until each breath is a private prayer for wisdom and strength as I endeavor to model compassion and inform confidence with measures of humility for the lessons I too must invite.
Each challenge is an opportunity to impact our community and to aspire to evolve further as individuals. Within this new group of educators, there is a future advocate who will one day soon recognize evidence of need and an administrator who will facilitate support. They will do this to include one child, but in doing so they will enhance an entire community of students.
On the days I grieve the change I cannot yet see, I realize that it is my job to create cause for hope. When it is too easy to count burdens, I remember our blessings in the names of the fearless individuals who have walked beside us each school year and remember that we have just begun to assemble a new team of warriors in a never-ending campaign for change.
letting go
May 3, 2014 § 8 Comments
Life lessons so often appear as a serendipitous suggestion, one that must be invited into consciousness with a full heart and open mind. In April I was challenged as part of an on-line community project to embrace an exercise in letting go by identifying a direction to the assigned release.
Philosophically I debated the idea of dwelling on a theme while the practical pieces of my personality wanted to target a particular, functional element of my days; behaviors, mindsets, insecurities, old dreams all seemed equally relevant and hopelessly evasive. In the end, I permitted myself the freedom of uncertainty and let go of knowing the answer.
The moment I gave myself room to move beyond expectation, an answer revealed itself; creating an opportunity for change.
The past eight years I have amassed a collection of materials intended to guide and inform my choices as a mother of children with special needs. They were safe havens of knowledge fostering hope and instilling determination; conveniently outlined problems with bullet point suggestions for success. I read these books, assimilating relevant terms and practices into my dialogue and directing my choices as an advocate; determinedly crafting a plan for mothering my children by mastering my understanding of their needs.
Initially these books were a silent community of compassion and encouragement; I found reflections of self reading others’ experiences. There was also, however, an expectation that my children, despite their uncompromised individuality, could conveniently confine their needs to text-book cliff notes.
When my army of knowledge could not preserve my children’s peace of mind or protect them from other’s harm I began to second guess the instincts that undermined my certainty. So much of what I read could not address the gaps in my children’s needs. In a world unbound by logic and sometimes unbalanced in kindness and empathy there was no certain insurance to inform and guard against the irrational errors of others. More importantly there is no more informed expert on the complicated beauty of a single spirit than a parent.
Today I am letting go of answers and embracing my questions; gifting many of the books that I no longer reference for answers to my children’s schools for teachers and other families. I am lending insight to create a more balanced dialogue of care and sharing the responsibility of knowledge in genuine partnership for change.
I am still uncertain of this journey I began so many years ago, but I am unwaveringly certain in this moment that knowing my children as individuals is much more important than understanding their diagnoses. Just as informing others is more important than shouldering the burden of change alone.
chance & choice
August 25, 2013 § 8 Comments
This week I was reminded of a valuable lesson: chance presents opportunities, choice empowers us to create change. One small act of faith accompanied by a series of intentional decisions have created an opportunity for our family to embrace uncertainty and for me to see myself more clearly.
I hesitated to share my last post, to speak of a new academic worry openly and to label an educator closed-minded. When I did, I wrote: I admire uncomfortable honesty. I write often of challenges to mark my children’s experiences and to center myself in greater self-awareness. In honoring our story I share difficult truths, this time I uncovered reflections of self of which I am not proud; my own uncomfortable truth.
My initial instinct in response to a brief, hurtful encounter with an educator was to shuffle my son’s schedule to avoid heartache and headaches. I wanted to shield him from unkindness or shortsightedness to create an atmosphere where discrimination wouldn’t clutter potential. Sometimes chance highlights choices to help us better see ourselves.
I was also hiding from the struggles I knew would shadow our school year. I labeled another but didn’t name my own shortsightedness. As the mother of a special needs child, when faced with the responsibility of advocating for my son and similarly challenged peers I chose an easier path. Chance humbled me with a difficult choice. I could leave my son in a classroom with a teacher that did not yet understand his needs or I could place him in the company of an unkind peer who had systematically bullied him for over a year.
Measuring experiences against uncertainty, flushing out potential from fears, weighing worries for the lesser of two harms I realized I could not so easily avoid the discomfort of an uncertain classroom. In both instances there is a threat of harm, an absence of control. The greater truth is we cannot so easily orchestrate our lives to avoid our fears.
If one choice hadn’t created new conflict I would have hidden from an opportunity, overlooking my son’s strengths and our abilities as a family to navigate a difficult experience. In focusing on protecting my child from harm, I almost overlooked his ability to inspire and inform. I expect this year will be riddled with challenges, more so for the uphill struggle, but the possibility that we can make a difference is encouraging. I am taking a chance and making a choice. I cannot shield my son from every unkindness, but I can have faith in his ability and my own to navigate difficult experiences with integrity.
introductions & expectations
August 23, 2013 § 8 Comments
For the past two years I have been fortunate enough to sit with my son among teachers and support staff in the quiet halls of his middle school just before the beginning of a new year. Prior to introductions my son is a name attached to a series of diagnoses and lengthy reports; in person he becomes the sum of his smile and I am the voice of his needs. I do this so that each member of my son’s team knows I am a committed partner in my son’s education and will advocate for classroom resources that enable greater success.
Beneath the informal introductions is a subtext: this average looking child has exceptional abilities and frustrating challenges, but he is capable academically. He will struggle to make eye contact during your lecture, but will retain your lesson almost word for word. He will fail to perform written exercises in traditional form, but verbalize coherent, complete answers as naturally as he breathes. He will act socially immature at times, because it is a foreign language he is largely fluent only in textbook application. No one is more aware of his differences than my son who lives in a body with a mind that is often overlooked because his needs are largely invisible, until they become inconvenient. His abilities often humbling us when we uncover his strengths.
This year, for the first time, an educator gave me pause. I could feel their displeasure as clearly as if it were a physical being absorbing the air from the room. Heavy walls stretched between us and while I measured the distance separating our perspectives for a path that might create shared expectations, I could not find common ground. For the first time I identified undertones of prejudice. Despite the tightness in my chest and lump in my throat, there was much to learn from listening. I set aside defensiveness and sadness to educate.
My son lives everyday with needs that make simple tasks overwhelming for the social undertones. I could easily place him in a modified academic setting, but I would be compromising his education and undermining him and his peers’ ability to navigate shared space. The behaviors that some might see as inconvenient to their day are not intentional acts of misbehavior, but invisible handicaps typical to his diagnoses. If my son’s legs were broken we would give him tools to aide his movement. If he could not speak or see, we would give him tools to perform alongside able-bodied peers. Patience is our greatest accommodation. I have never compromised my expectations, rather my son strives to meet a standard that is often higher for the effort it takes to balance his needs to perform among peers as an equal. My son faces unkindness and frustrations with determination. It is because of his abilities that I advocate for him, not his inabilities.
In truth, I admire uncomfortable honesty as a promise of possibility. We learn from one another in lessons that extend far beyond thoughtfully prepared classrooms. Each year I am wiser for the team of educators I partner with and I hope their lives are richer for the experiences we lend them. We begin with introductions and expectations to mark a new path.
scribblechic 