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 righteven when were not quite sure ourselves how we manage to.
Apparently, however, there are limits to this magic called a mothers lovea reality Ive been wrestling with as of late.
My son was diagnosed with intellectual disability later in childhoodat age 10, delayed a bit by pandemic upheaval. Since age 6, Cyrus had carried a clinical diagnosis of Opitz Kaveggia Syndromea 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 obligatorynot 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 6though 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 cant fully explain.
Now, my adorable, sweet intellectually disabled child is turning into an intellectually disabled adult whom society simply doesnt value. While hes only 11, hes in the final stage of puberty, his endocrinologist saysa process hastened by the growth hormone shots he takes nightly because his brain doesnt produce enough. Middle school looms. And nothing Ive donenot the countless nights Ive lost sleep to research his myriad conditions, not the tens of thousands Ive thrown on extra resources insurance wont coverhas changed this reality.
When and where it matters the most, I feel like Ive failed. I didnt fix it. I didnt 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 didnt walk until 2. His speech and fine-motor milestones were delayed, too, but I cant really tell you by how much. He was my first and onlyand 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 significanceone 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 wrongas 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 trutheven 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 averagefinally, 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 sonskids who, like Cyrus, had deceptively strong verbal skills and a lot of scatter in other areas.
Things werent 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 Id 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, Id existed fairly comfortably in quasi-denial of Cyruss 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, moneyfor gods sake, take my moneywould change his trajectory. Hed grow up to live a fulfilling life that didnt entail struggle and marginalizationa life of ease, devoid of the struggle that defined his childhood.
To be fair, Ive 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 wouldnt 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 cant I fix this? I wonder, when it comes to his intellectual disability. Such thoughts, however, beg the question, What is there to fix? Were talking about a kid who combs my hair and gives me forehead kisses as I work. Who bails out my car when Im 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 dayeven when he cant remember exactly how to dress himself.
Shouldnt 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 tragedyI simply wont tolerate the narrative. So why must his future be?
Help him or get out of his way
These days, I dont 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 isnt created by nature, but by society. Im 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, Ive 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 wonderedan 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 hell excel at. But hes creative and resourceful, with a winning attitude. Hes kind and he works hard, and has a solid handshake. Show up five minutes early to class and leave five minutes late, and hell 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.
Id had everything about my son backwardsand the epiphany came not from the doctors and educators Id so desperately looked to over the years, but from the owner of a welding shop who wasnt intimidated by the notion of teaching a slow kid to play with fire.
My son doesnt 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 its 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 abandonwoe 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 Ive 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 isnt 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.
