A ‘Thank You’ to an Autism Parent

Last night was Talent Night for our kids—yours and mine and other 6th, 7th and 8th graders at their school. If you felt like I did, you were a little bit of a nervous wreck inside, though you tried your best not to show it, lest your child get nervous too. I don’t know you, but I assume you sat there, like me, in that darkened auditorium, cheering on other people’s children. You waited both apprehensively and excitedly for your son to step onto that stage and hold his own among his neurotypical peers. I waited for my daughter, no less apprehensively or excitedly, to rise above a less-than-stellar sixth grade year.

I don’t know your son, but I noticed the quiet murmur that went through the audience when he stepped into the spotlight. My son, sitting next to me (two years older and dragged out that evening against his will), leaned in and whispered to me that your son was always singing and yelling in the school hallways, often loudly. The halls, as you know, are supposed to be quiet and orderly. I understand—my daughter is an “inappropriate singer,” too. She’s also disorganized, and not wholly socially adept. I’d spent the year fielding calls from the school counselor, nurse and, on one occasion, vice principal. It’s been a rough year.

Your son opened his mouth, and the audience went silent. I hope you were recording his performance; I bet your hands were shaking. He was amazing. Any fears you might have had probably disappeared before he was even midway through his performance. He may have had some quirks, but his voice stayed strong. When it was done, he was so proud of himself.

When he went to take his seat, I noticed in the dim light that he was sitting next to my daughter. It turns out, though you and I don’t know one another, they’re friends. She raised her hand to him and they high-fived one another.

Eventually, it was her turn. As the spotlight came on, there she was, sitting on a stool with just a microphone and her beautiful voice. I couldn’t help but admire the guts that it took for her, for your son, for any of those kids who aren’t necessarily the popular kids at school, to stand up in front of their peers and do their thing. They exude a confidence that, while I’m not sure about your son, my daughter doesn’t always have. A bully had helped take some of that confidence away just this year. We’re working to get it back.

And that’s why I want to thank you. Because when my daughter was done, she too went back to her seat. And your son put his hand up and offered her the same high-five that she’d offered him earlier. She returned it and sat back down next to him, a wide smile on her face.

This month, as all of us know, is Autism Awareness month. Some people argue about the merits of awareness vs. acceptance, and whether one is more important, more useful, more necessary than the other. As the mom of a neurotypical child who often walks to the beat of a different drummer, I’m grateful to your son for being quietly aware and accepting of her. It means more to me than you’ll ever know.

Let’s Get Real About Autism

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.

Ignorance Is an Ugly Word

April is Autism Awareness month, and every year at this time I think about writing something. Typically, it never works out, as I get sidetracked by other ventures or just life in general.

This year, however, I think it’s important to address one issue we constantly see in the comments or discussions by those unfamiliar with Autism.

The word ignorance.

What an ugly word.

According to Merriam-Webster, ignorance is defined as, “the state or fact of being ignorant: lack of knowledge, education, or awareness.”

It’s a fair definition, but ignorance is often a two-way street. People are quick to often jump on others, without understanding the sentiment or experience behind their comments. After all, do you know what kind of day that person is having? Do you know anything more about why he/she feels that way? Are you biased towards how the situation would likely be commonly perceived?

Isn’t it ignorant on your part to just assume that person is ignorant, and dismiss them?

There are no winners in calling anybody ignorant.

Almost any attitude can be overcome with “knowledge, education and awareness,” and, of course, some kindness and patience. However, the step to overcoming has to begin with someone.

As a special needs parent, I have never really felt that anyone was ignorant. I have felt defeated, ignored and quite a few other words. I have also felt that I just don’t have the patience to deal with some people and it’s better to just wink and nod—after all, some people are just happy being miserable.

Once I use that word “ignorant,” however, it feels like I am simply stooping to their level and, well, that is not going to help anyone. Between personal and work responsibilities, there’s no time for this additional drama in my life. My hope is maybe one person will read this letter and stop using that word.

Try to educate someone. Do something to create more awareness. There is no need to use the word “ignorant.” It often just breeds more negative energy in your own daily life when the person who is assumed to be “ignorant” really probably doesn’t care anyway.

My favorite quote is by George Bernard Shaw – “Never wrestle with a pig. You both get dirty and the pig likes it.”

Place your energy in battles you can win or people you can educate, and try to remove this word from your vocabulary. You may be surprised how much better it makes you feel.