Every single child on the autism spectrum is wired with their own unique set of differences, needs, challenges, abilities, characteristics, co-morbidities and outcomes. Therefore, I want to get real about autism.
I am tired. I feel ill-equipped to engage in the special needs division of fighting, pleading, advocating, correcting, helping, providing, pushing, competing and crying for my son. My heart is torn between this fierce desire to keep my son encased in a safe, secure bubble, protected by those who understand and love him best, and the painful realization that I must also share him with you.
I must expose him to your children, take him to public spaces where his meltdowns scare off his peers and draw negative attention from critical onlookers who question my parenting skills with their piercing glances. I can’t protect him from those who judge, from children who tease, from experiences he doesn’t yet understand but is required to participate in.
Exposing him to the world is just one of the perpetual fears I struggle with daily, guardedly draped beneath a velvety blanket of anxiety, distraught, stress and worry because it’s true: He is different, unique, beautiful, and yet, misunderstood. As spring approaches and the ever-occurring/always-reminding month of April crept closer, I prepared myself to be emotionally adequate to withstand the 30-day stretch of Autism Awareness month and its constant reminders and advertisements that pummel my heart and cripple my soul.
Autism, by my definition, is a neurological disorder that robs, steals, hides and complicates. A disorder causing pain, trauma, fear, anxiety, unpredictability and doubt so thick it’s disorienting. Be forewarned: If you are hoping to read yet another beautifully written story about children that have beaten the odds; discovered their high IQs and unique gifts; attended well-designed, fully-equipped schools; and participated in elaborate programs with creative therapies; and you like unicorns and rainbows, then please stop now, for my story is not for you.
I’ve read those stories too, but find them difficult to relate to. I’ve hoped, dreamed and prayed for those stories to happen similarly for our little boy. I’ve searched for those schools, therapists, programs, insurance companies and services that our son deserves as well. I’ve read, studied, listened and researched and, quite frankly, I’m overwhelmed and exhausted. There’s a constant, excruciating pain ripping through my heart like a double edged sword and it hurts like hell. Let’s get real about autism.
Antagonistic emotions battle for primary residence within my soul; a labyrinth of perplexing, complicated, contrary forces struggling to reclaim harmony. An absurd intensity of hope, love and admiration combined with perseverance and zest bestow clarity and reveal endless possibilities, a positive outlook, a permissible moment in time to release deeply rooted stress. The affirming emotions create a warmth like that of the sun’s rays as they slip through the impaired windowpane, yes, the one previously shattered by an explosive meltdown. Regrettably, the heart’s chambers contain valves that allow blood flow to permeate and move about, its interconnected components mixing and muddling the clarity with tainted sentiments.
This afflicted portion of my heart struggles with negativity, meltdowns, anticipating unexpended behaviors, calculating risks and medication doses, insurance companies that refuse to cover care, hopelessness, bills, schools without funding. It all causes panic to ensue, depriving cells of necessary oxygen, misguiding thoughts to certain death. The constant stress of IEP meetings, sleepless nights, wondering if you have the correct therapies in place, if you’re doing enough or even if you are enough. Keeping these complexities isolated is nearly impossible, yet I put on my brave face and smile for my sweet boy as he looks to me for safety, security, predictability and love. He melts my heart over and over.
I must admit that the dark, quiet space in the far corner of our master bedroom closet is mine. I have claimed this space as a sanctuary I can retreat to, curl up into a ball, hug my knees tightly and let the tears effortlessly stream down my face like the pouring rain, occasionally gasping for air in between unforgiving sobs. Nothing brings me to this space like an unpredicted, publicly displayed meltdown. Nothing makes me feel more like an ill-equipped, crazy mother like an hour-long outburst. Nothing brings me to tears more often than the emotionally hurtful screams, wild flailing arms and toys catapulted across the room like missiles abruptly launched from a silo.
It is autism that has created this nook beside the shoe rack and carelessly strewn clothes, underneath the hangers where clothes should be neatly hung. It is autism that has me questioning my strength, searching for God, answers and inner peace, challenging my weaknesses, and scarring my soul. It has me grasping for answers, longing for camaraderie, consulting with specialists, and attending support groups mostly comprised of other exhausted moms.
Autism is often disguised behind typically developed appearances and ordinary features, secluded in specialized classrooms within traditional schools, observed near swing sets sited on neighborhood playgrounds. Often, it’s saturated with painful, lonely, frightened, peculiar characteristics. It can routinely rob a child of playdates, birthday invitations and summer camps, as well as isolate families from casual dinners, relaxing vacations and desperately needed babysitters.
These complexities are intricately woven like a spiral orb web between social and behavioral deficits and heart-wrenching situations. They are undeniable, understandable and taxing, yet gratefully intermittent. Despite this sticky, yet carefully engineered web of autism, I am steadily discovering my voice, learning to advocate, and creating avenues for awareness, acceptance and equality.
Let’s get real in this arduous journey. We are not alone.