The guilt of a mother of a child with disabilities is an endless scroll from the shaming sea.

What if he hadn’t had colic?
What if I had been stricter with my diet?
What if I had been a more pristine artifact – a template from which to stamp the perfect child?

Because life doesn’t work that way: it’s messy and ironic – Alanis had it right. It’s releasing the most impeccable steak from a Viking Range, expertly seared with show-stopping grill marks; you’ve plated it like those people on food competition shows, valedictorians of the CIA – then you drop it. In dog hair, gravel, and filth – mucked up and tarnished, yet at its core still, somehow, a thing of beauty.

The irony isn’t lost on me: I spent nearly fifteen years spanning the breadth of my twenties and thirties earning degrees and credentials in Special Education and Autism Teaching Strategies. During the years I completed my Master’s degree, I worked as a Research Associate on an NIH-funded autism epidemiology project at an Ivy League institution. In whose hands would God be sure an autistic boy with charm, wit, and creativity should be placed but mine? (How did I get so lucky?)

The boxes were checked in the stars: advanced maternal age, premature birth, mother with ADHD (and not the current tik-tok varietal – the kind I endured through the 80s and 90s before the advent of present-day sensibilities regarding how ADHD manifests in girls). My researcher brain knew it was plausible; the behavior analyst in me suspected the signs were there; my maternal instincts offered me caution with a generous side of guilt. But I was clearly educated beyond my intelligence.

I will never forget that day nestled neatly in the height of the pandemic – the summer of 2020 – I realized all of the little minutiae I had collected and parsed without intellectual assembly finally gelled into a possible diagnosis.

As I sat at my makeshift workstation in our dining room, sifting through the USDA proposals my faculty intended to submit, trying my level best to concentrate, the unrelenting July sun streaming through our windows: I heard it. It was as distinct as someone laying gentle hands on my shoulders, telling me to my face. Our son was playing just a few feet away from me – nearly three years old at the time – and I heard it. My entire body tingled, my face warmed with a red heat, my heart plunged: because I heard it.

“Take the car. Take the car. Take the car….”

Echolalia.

I watched for an eternity as the repetitive language and behaviors continued, my son’s only slight registration of me and our dog. Time was irrelevant – my entire focus rapt, my gaze irrevocably fixed on my beautiful little boy. Lying on his side, angelic face pressed against the cool wood floors, intently observing how the tires of his Hot Wheels rolled back and forth, back and forth. Periodically, he would sit up, staring at his Hot Wheels Universe, clenching his sweet little fists, open and shut, open and shut.

Stims.

The bricks came next – the scaffolding of understanding what I was witnessing coupled with the seizing pressure of realizing what it meant. I sat beside him on that cool wood floor, desperate to join his world, caressing his back and kissing his cheek as he reveled in the activity of his mind, racing intrusive thoughts occupying my own. What if I had realized sooner?

Repetitive behaviors.
Lining things up.
Hand flapping.
Eloping.
Our questions that went unanswered, not responded-to.
Sleepless days and nights; even a cat nap seemed rare.
Shrieking vocalizations.
Sensory seeking – oh my God, the climbing!

I wanted to reach my mama arms in and pull my son into “this” world, holding him close, safe from the confines of a disability. Patience and pragmatics overrode my fears: I took six – SIX! – online assessments that all read the same result: Moderate: Highly Likely Autism. As I came around to the idea and forgave myself for not catching it sooner, I worked up the courage to share my concerns with friends and family.

“You think too much about these things.”

“All kids do that – and he makes eye contact.”

“Have you seen him run? He’s an athlete.”

What if all of these things are true?

As part of the required efforts from the preschool our son attended at the time, my husband and I finally received the formal evaluation and eventually, the words slowly and hesitantly came from the mouths of the teacher, psychologist, and educational diagnostician; words that changed everything for us.

“It’s quite possible he is twice exceptional; he really is a sweet, bright little boy. Sometimes the strengths mask the disability.”

“I am really confident that with the right supports and in the right classroom, he will be on grade level by Kindergarten. We’ve seen this before, and it has always been really positive.”

Disability. Supports. Grade level. Sensory integration. Therapy. Speech delays. These were not the utterances we expected to hear in preschool. Being dismissed from a private preschool to enter one for “children on the spectrum(1) and their typical peers,” also not part of the grand plan, but who genuinely sets out with that idea?

We immersed ourselves in the study of our son: he was still the same incredible person he was meant to be – the one we’d fallen in love with before he was even born, the one we would go to the ends of the earth for – it’s just the terrain that looked a bit different now. We learned his signals, subtle at first – a hand to the outside of his ear (exhaustion), a rigid body before a playdate (stress and anxiety, which would mean eloping later), shrieking in the car on the way home from a gathering (a stress release – freedom!), arguing (I feel safe with you) – and the map we were handed that we hadn’t known slowly emerged as a 3D model of the path now laid before us. We learned that a tired sensory-seeker is a happy sensory-seeker, so we did our best to wear him out: we created obstacle courses, challenges and gave him safe places to climb and jump. I learned more about the benefits of and uses for body socks, compression blankets and trampolines, desperate to ensure our son had his needs met: would I ever feel capable?

Unwilling to allow perfection to be the enemy of good [creativity] and unable to afford much of what I found online for sensory needs, I created my own “swings” by knotting the ends of blankets and rocking him by hand, adoring his bright smile and cute giggles as he swayed; I fashioned bongo boards out of plywood and foam rollers discovering his perseverance and strong balance. Together we made crash pads by throwing the sofa cushions on the floor, covering them with blankets and our son would spend gleeful hours casting himself onto the pillowy landing. We learned that water is a powerful elixir: we bought a large Intex pool that occupied our entire patio, and our son spent every day he could in that pool, hours upon hours of relishing in his weightlessness, watching his toys submerge as he threw them, gathering his little treasures from the bottom again, and again, and again.

I squeezed every drop from the fruits of my previous life, wholly and passionately dedicated to this new one: books from graduate school, newsletters and magazines I had submitted articles to in hopes of helping a parent I didn’t know understand what an “IEP” was; now, here I was the parent hoping someone else’s article held the keys to our future. My Facebook and Instagram feeds were murals of dedication to Autism parenting. Individuals whose content I only appreciated surface-level before became my peers, and I thank them endlessly for what they do because some days, without that, I would be lost. I could make reasonable sense of the data I was taking, tracking the ABCs – Antecedent, Behavior, Consequence – so that we could begin to visualize patterns: patterns of rigidity, patterns of anxiety, when to anticipate a meltdown, but at the end of the day I craved camaraderie.

We fully committed ourselves to the process, learned how to navigate meltdowns and prevent eloping, and waded our way through a restrictive diet thanks to an impressive roster of food allergies – the worst part was the blood draws. It broke my heart, hugging his warm little body close to me when the phlebotomists poked his arm, and yet, he took it all in stride – our little champion.

It may be true and relevant what they say about parenthood, that “the days are long but the years are short”, yet our days are marked with something a bit more indelible: inked by fear, anxiety and worry; fraught with notions of whether or not our child will be accepted by his peers – will he have friends?! Will he make friends who’ll know how to be friends with him? He might not understand someone when we’re not around and misread an important social cue. Am I a helicopter mom, or just reasonably concerned?

Six months later in the Winter of 2021, I left my well-paying job at a leading University to become a Paraeducator in the Autism Program within our public school district. While to some this was a backward trek, to me it made perfect sense. Not only did I have the distinct honor and pleasure of working with some of the most dedicated individuals I have ever met, but I was also on our son’s exact schedule (at a different school and in a specialized program, which he was and is not), gathering some insights into district operations so that we could better plan for his education. Is this an extension of helicoptering? I sincerely believe I was building a network and partnerships; understanding the intricacies of what I didn’t know – there is still so much – to help our son at home.

With time and patience, some things eased. With the incredible support of our son’s schools, the “what if’s” adjusted their tone. Yes, we had endured being asked to leave a preschool that could not accommodate our son. We’ve been told we cannot join certain sports or activities because our son struggles with focus. We have been denied application (forget entry) to private schools on the basis of our son’s diagnosis(2). We’ve had to leave stores or events quick, fast and in a hurry because our son was screaming. We’ve felt the awkward twinges of pain when our son has been corrected by other parents, usually parents who are frustrated by our son’s autistic traits that they don’t understand (such as inappropriate laughing or not listening). We’ve had to replace broken items due to our son’s impulsivity and a swiping phase he went through. For several years we planned our footwear carefully due to an eloping habit. These are not just things we went through or had to do: they were the things we began to accept or were willing to do because our son is worth it.

While I’ve long since untethered myself from an unsophisticated longing that soccer or baseball will be critical centerpieces of our lives, the shimmer did not dissipate with it, because we have art, a Ninja Warrior class, and biking. Maybe one day cross country? And we have friends – beautiful, incredible friends. Perhaps there is catharsis in grieving the thing we do not have, but isn’t there beauty in all that makes us who we are?

I am far from perfect. I am not a martyr or even a fantastic role model, and I am not seeking sympathy, only understanding. This is my story and I am an educator to my core, so this is how I’ve grown and I’ve learned: maybe it will help another parent or teacher. Through this journey with our son, I have also come to face the realities of my own neurodivergence – a term I am now leaning into. I understand more about myself, and thus, I can better support our son. None of this should discount the years of work and study: if one thing remains clear amidst the hazy disorientation of navigating a different “new normal” it’s that research – the good, the bad, the ugly – is the lifeblood coursing through the veins of progress. Awareness. Appreciation. Acceptance.

And, yes: these can all be true. Even for me. Even for our son.

So then –
What if my son is exactly who he’s supposed to be?
What if I don’t need to feel pressured by keyboard warriors and conspiracy theorists who want to tell me that I’m the reason: it was the cereal I let him eat, or that one time he had jarred baby food?
What if we didn’t agree to the plan; what if we refused to have our son “labeled”?
What if I can just lean into this – respecting nature, ensuring nurture, and protecting everyone’s energy?
What if we all worked harder at being present in a way that people need us?

Is it less glamorous? Yes. But nothing worthwhile ever came easily.

 

(1) This was the parlance at the time; we now appreciate the preferred term of Autistic person.
(2) Please find additional information on exemptions to the Americans with Disabilities Act and other Federal regulations; religious-based private schools (i.e., Catholic) are not required to admit or accommodate children with disabilities.

Sara E. Golden is a wife, mother, teacher and reference specialist dedicated to expanding access and opportunities for individuals of all abilities. She has earned two degrees and several certifications in Education and Research Administration which she puts to use helping others as best she can. Sara loves reading, writing, cooking and spending time with her family, especially when that time is spent at the Jersey Shore.