My intellectually disabled child is growing up to be an intellectually disabled adult. I won’t let it be a tragedy

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Moms are fixers.

We fix all the things. From bloody noses and skinned knees, to broken hearts and shattered self images, we have the uncanny ability to make everything right—even when we’re not quite sure ourselves how we manage to.

Apparently, however, there are limits to this magic called a mother’s love—a reality I’ve been wrestling with as of late. 

My son was diagnosed with intellectual disability later in childhood—at age 10, delayed a bit by pandemic upheaval. Since age 6, Cyrus had carried a clinical diagnosis of Opitz Kaveggia Syndrome—a rare, X chromosome-linked “mental retardation” disorder. Also known as FG Syndrome, the condition often involves “midline defects” like tethered spinal cord, brain abnormalities, and laryngeal cleft, in addition to low muscle tone, absolutely wicked constipation, immune deficiencies, and, well, intellectual disability. 

No one symptom, however, is obligatory—not even intellectual disability, Dr. John Opitz, a legend in the world of genetics who discovered this and many other syndromes, and who so generously met with and diagnosed Cyrus in retirement, once told me.

The actual diagnosis of intellectual disability eluded Cyrus for years. Neuropsychological testing repeatedly returned IQ scores in the normal range from ages 4 through 6—though he began to amass an entire collection of other cognitive diagnoses like ADHD, Auditory Processing Disorder, Visual Processing Disorder, Sensory Processing Disorder, executive dysfunction, slow processing speed, and nearly every learning disability known to man.

All the while, most medical and educational professionals dismissed Cyrus’ warning signs of intellectual disability, from delayed developmental milestones to woeful academic performance despite every intervention I could afford. Six-year-old Cyrus attended occupational, physical, and/or speech therapy five or six nights a week for years. He would catch up if he just worked harder, they insisted.

How wrong they were. After years of gaslighting, Cyrus’ IQ tanked an astonishing 30 points in two years, for reasons we still can’t fully explain.

Now, my adorable, sweet intellectually disabled child is turning into an intellectually disabled adult whom society simply doesn’t value. While he’s only 11, he’s in the final stage of puberty, his endocrinologist says—a process hastened by the growth hormone shots he takes nightly because his brain doesn’t produce enough. Middle school looms. And nothing I’ve done—not the countless nights I’ve lost sleep to research his myriad conditions, not the tens of thousands I’ve thrown on extra resources insurance won’t cover—has changed this reality.

When and where it matters the most, I feel like I’ve failed. I didn’t fix it. I didn’t fix him. And the whole thing is gutting me.

The truth I never wanted

Cyrus took what seemed like a weird, winding road to his intellectual disability diagnosis. Despite therapy, he never crawled, and he didn’t walk until 2. His speech and fine-motor milestones were delayed, too, but I can’t really tell you by how much. He was my first and only—and I was a little too busy keeping a medically complex child alive to pay much attention to whether he could fish Cheerios out of a bottle with an index finger.

Whole genome and exome sequencing were eventually performed on Cyrus, and the results came back a perplexing mix of errors. There was one that would be considered disease-causing if he had two copies of it instead of one. And there were two of unknown significance—one on a gene that was once a candidate for a type of FG Syndrome, interestingly enough. 

As I pushed for additional answers and help for Cyrus, doctors seemed convinced that I hoped something was wrong—as if I had some borderline version of Munchausen that had me wanting the worst for him without actually causing it. But all I wanted was the truth—even though I knew it would be an inconvenient one, at best, and an emotional wrecking ball, at worst.

Mere months before COVID hit, a school psychologist evaluated Cyrus. His IQ came back officially below average—finally, a score that felt a bit more believable. He was reevaluated in the fall of 2021, after he returned to school in person. I convinced the new school psychologist to use a different test that seemed to expose the complex pattern of cognitive strengths and weaknesses in children with a diagnosis similar to my son’s—kids who, like Cyrus, had deceptively strong verbal skills and a lot of scatter in other areas.

Things weren’t looking good, she warned me as we met throughout the process. When the results had been tallied, she phoned and asked me if I was sitting.

I closed my eyes and braced for the reality I’d spent years attempting to expose, but never truly wanted.

My son was intellectually disabled.

I sighed in relief. At long last, I had the truth. When I opened my eyes, thick cascades of tears enveloped my cheeks. I would spend years dealing with the fallout.

Honestly, I may spend the rest of my life doing so.

My son is not a tragedy

Up until I got the news, I’d existed fairly comfortably in quasi-denial of Cyrus’s condition. I would push for recognition of what was “wrong” in a bid to obtain the help he needed, both in and out of school. But I almost preferred to believe I was indeed crazy, that things were not as dire as they seemed. Some ungodly amount of intervention, educational toys, books, camps, classes, therapies, money—for god’s sake, take my money—would change his trajectory. He’d grow up to live a fulfilling life that didn’t entail struggle and marginalization—a life of ease, devoid of the struggle that defined his childhood.  

To be fair, I’ve been fixing things for Cyrus his entire life, and it seemed reasonable that I could do so again. A third of kids with FG Syndrome die before age 2. Those who make it past tend to get heartier with time, they say, until educational concerns surpass the physical ones. I kept Cyrus alive through countless ER visits, ambulance rides, hospitalizations. When no one could figure out what was going on with him, I took him to specialists in five different states on a years-long diagnostic odyssey simply so he could receive help. Our visit with Opitz was the lone bright spot on an otherwise traumatic, bleak, and isolating journey.

I had Cyrus’ tethered spinal cord fixed; taught him to walk again after. I had his laryngeal cleft fixed, so he could eat without aspirating. I eventually relented and had a cecostomy tube placed, so his severe constipation wouldn’t leave him homebound or hospitalized, unable to go to school or play with friends. No diagnosis or intervention was handed to us; each was hard-won and highly scrutinized.

So why can’t I fix this? I wonder, when it comes to his intellectual disability. Such thoughts, however, beg the question, What is there to fix? We’re talking about a kid who combs my hair and gives me forehead kisses as I work. Who bails out my car when I’m stuck in the snow, and changes the license plates on my car when I get new ones. Who sends adorably misspelled love notes to the printer on my desk, from the home office where he schools to avoid bullying. Who voluntarily sits with me during low blood sugar episodes, and sets my shoes and coat out for me before I leave the house each day—even when he can’t remember exactly how to dress himself.

Shouldn’t we all be so lucky, so ridiculously fortunate? I wonder. The anger inside of me stirs at the notion that I, as a parent of an intellectually disabled child, have somehow been shorted, denied what must be the only blessing available to mothers: an honor-roll child who eventually flies the nest to white-collar success.

My son is not a tragedy—I simply won’t tolerate the narrative. So why must his future be?

Help him or get out of his way

These days, I don’t find myself mourning my son. I do, however, find myself mourning the society that has set him up for struggle and, barring massive intervention, what feels like abject failure. They say so much of the “disabled” experience isn’t created by nature, but by society. I’m sad and angry that we live in a world with so many people seemingly hell-bent on manufacturing obstacles for people like him, instead of helping them overcome the relatively few placed there by nature.

Last weekend I took Cyrus to welding class, something I signed him up for in a bid to discover a hidden talent or passion of his. The instructors, I’ve heard, heap praise on him, and I needed to know if they were simply being kind. Could my son actually have a future in an industry that pays decently, I wondered—an alternative to the minimum-wage service positions adults with intellectual disabilities are so readily relegated to?

Cyruse has potential, the instructor assured me. Low reading and math skills are likely to limit his opportunities, and fine motor issues the types of welding he’ll excel at. But he’s creative and resourceful, with a winning attitude. He’s kind and he works hard, and has a solid handshake. Show up five minutes early to class and leave five minutes late, and he’ll have certifications and a reference when the time comes, I was told.

There it was, back without warning: the sigh of relief and cascade of tears that accompanied news of Cyrus’ intellectual disability diagnosis.

But this time, there were tears of joy.

I’d had everything about my son backwards—and the epiphany came not from the doctors and educators I’d so desperately looked to over the years, but from the owner of a welding shop who wasn’t intimidated by the notion of teaching a slow kid to play with fire.

My son doesn’t need fixing. Not only does he brighten days on the regular, he has talent of tangible benefit to society. I just had to dig for it when no one else cared to. Society needs fixing, but it’s a problem too large and looming for one mom. Still, I can chip away at the backward ableist thinking of the world, be it hateful or merely ignorant.

I can find a path for Cyrus, reminding him that the limits others place on him exist only in their minds. And I can clear that path with relentless abandon—woe to any who gets in his way.

Years ago, as I sat in the NICU, wrestling with what Cyrus’ future might look like, a nurse shared a pearl of wisdom I’ve never managed to forget. Sometimes, she said, kids like Cyrus just need someone to walk with them.

Not fix them. Not fix the world for them. Just journey with them. 

We are simply humans, with our trials and travails, walking each other home. In that way, our story isn’t all that different from yours. 

Anyone who would have you believe his story is a tragedy has some soul-searching to do.

It will, however, be a triumph.

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