Moms are problem solvers.
We are the solution to all problems. From bloody noses and scraped knees to broken hearts and shattered self-images, we have the uncanny ability to make it all right, even when we ourselves aren’t quite sure how.
However, it seems that this magic called a mother’s love has its limits, and I have been struggling with this reality lately.
My son was diagnosed with intellectual disability later in his childhood, at age 10, a little later due to the disruptions of the pandemic. Since he was 6 years old, Silas has had a clinical diagnosis of Opitz-Caveggia syndrome, a rare “intellectual disability” linked to the X chromosome. Also known as FG syndrome, the condition often involves “midline defects” such as spinal cord adhesions, brain abnormalities, and laryngeal clefts, as well as poor muscle tone, severe constipation, immunodeficiency, and intellectual disability.
But not all symptoms, not even intellectual disability, occur invariably, Dr. John Opitz, the genetics legend who discovered the syndrome and many others and who met with Cyrus, now retired, to give him the diagnosis, once told me.
Silas went many years without receiving an actual diagnosis of intellectual disability, and while neuropsychological testing repeatedly showed his IQ scores to be within the normal range from ages 4 to 6, he began accumulating a whole host of other cognitive diagnoses, including ADHD, auditory processing disorder, visual processing disorder, sensory processing disorder, executive function disorders, slow processing speed, and just about every learning disability known to mankind.
Meanwhile, most medical and educational professionals ignored the signs of Silas’ intellectual disability — from his developmental delays to his terrible academic performance despite all the intervention I could afford. For years, 6-year-old Silas attended occupational, physical, and speech therapy five or six nights a week. If he just tried harder, they insisted, he’d catch up.
How wrong they were: after years of gaslighting, Cyrus’ IQ dropped a whopping 30 points in two years, for reasons that still can’t be fully explained.
Now, my sweet, gentle, intellectually disabled child is turning into a socially unappreciated, intellectually disabled adult. He’s only 11, but his endocrinologist says he’s in the final stages of puberty, a process sped up by nightly growth hormone injections because his brain doesn’t produce enough of it. Middle school is looming. And nothing I’ve done, not the countless sleepless nights I’ve spent testing his myriad symptoms, not the tens of thousands I’ve spent on extra procedures not covered by insurance, has changed this reality.
I feel like I failed when it mattered most. I didn’t solve it. I didn’t solve him. And all of this is tormenting me.
The truth I didn’t want
Silas seemed to have a strange, winding path to receiving a diagnosis of intellectual disability. Despite treatment, he never crawled and didn’t walk until he was 2 years old. He was also delayed in the development of speech and fine motor skills, though I’m not sure exactly how delayed. He was my first and only child, and I was too busy trying to keep a medically complex child alive to pay much attention to whether he could pick Cheerios out of a jar with his index finger.
Cyrus’ whole genome and exome were eventually sequenced, and the results were a puzzling combination of errors — one that would have been disease-causing if two copies were present instead of one — and two other errors that just didn’t make sense. Intriguingly, one of these was in a gene that had once been a candidate for a form of FG syndrome.
When I pleaded for further clarification and help for Silas, the doctors seemed convinced that I hoped something was wrong, as if I was a borderline Munchausen sufferer wishing the worst upon Silas when in fact it wasn’t. But all I wanted was the truth, even though I knew it would be an inconvenient truth at best and an emotionally devastating truth at worst.
Just a few months before the COVID-19 pandemic, a school psychologist evaluated Silas. His IQ was officially found to be below average. Finally, a score that was a little more believable. In fall 2021, he was reevaluated after returning to school in person. I convinced the new school psychologist to use a different test that I thought would reveal the complex patterns of cognitive strengths and weaknesses in kids with diagnoses similar to my son’s. These kids, like Silas, had surprisingly good verbal skills but were quite variable in other areas.
She had been warning me throughout the process that things weren’t looking good. Once the results were tallied, she called and asked if I was sitting down.
I closed my eyes and prepared myself for the reality I had spent years trying to uncover but never truly wanted.
My son had an intellectual disability.
I breathed a sigh of relief. Finally, I knew the truth. I opened my eyes and tears flooded my cheeks. I would live with the repercussions for years to come.
Honestly, I could spend the rest of my life doing that.
My son is not a tragedy.
Before the news, I had been living quite comfortably in semi-denial about Silas’ condition. I pushed for an admission of what was “wrong” so he could get the help he needed in and out of school. But I wanted to believe I was really crazy, and that things weren’t as dire as they seemed. A tremendous amount of intervention, educational toys, books, camps, classes, therapy, and money (please, take my money) would change his trajectory. He would grow up to live a fulfilling life without alienation, a carefree life free of the struggles that had defined his childhood.
In fairness, I had done so much for Silas throughout his life, so it only seemed natural that I would do so again. One-third of children with FG syndrome die before age two. Surviving children do better over time, they say, until educational concerns outweigh physical ones. I had kept Silas alive through countless emergency department visits, ambulances, and hospitalizations. When no one knew what was happening to him, I took him to specialists in five states and spent years trying to get him diagnosed so he could get help. Meeting with Opitz was the only silver lining in a traumatic, dark, and lonely journey.
I repaired Silas’ spinal adhesions and then taught him to walk again. I repaired his laryngeal cleft so he could eat without aspirating. I eventually relented and put in an appendix tube so he wouldn’t be trapped at home or hospitalized with severe constipation that would keep him from going to school and playing with his friends. Diagnosis and treatment were not given to us; each was hard-won and meticulously scrutinized.
So why can’t I fix this? As for his intellectual disability, one wonders. But such thoughts lead one to question what to fix. We’re talking about the kid who brushes my hair and kisses my forehead while I’m at work. The kid who rescues my car when I’m stuck in the snow and replaces my license plates when I get new ones. The kid who mails adorably misspelled love letters to the printer on my desk from the home office where she works at school to avoid bullies. The kid who volunteers to sit beside me when I have a hypoglycemic episode and has my shoes and coat ready for me every day before I leave the house, even when I can’t remember exactly how to dress myself.
Shouldn’t we all be this lucky, so incredibly lucky? I feel a rage well up inside of me at the idea that as the parent of a child with a learning disability, I was somehow robbed, denied the only blessing a mother can receive: an honor student who eventually becomes a successful white-collar worker.
My son is not a tragedy, I just cannot accept the narrative, so why should his future be a tragedy?
Help him or get out of his way?
These days, I don’t mourn my son, but I mourn the society that put him in a situation that would have led him to suffer and to fail miserably without major intervention. They say that many of our experiences of “disability” are created by society, not nature. I feel sad and angry that we live in a world where there are so many people hell-bent on creating obstacles for people like my son, rather than helping them overcome the relatively few obstacles that nature has given them.
Last weekend, I took Silas to a welding class, which I signed him up for in an attempt to discover his hidden talents and passions. From what I heard, the instructors were lavishing praise on him, but I wanted to know if they were just being nice. Could my son really have a future in a well-paying industry, I wondered? An alternative to the minimum wage service jobs into which adults with intellectual disabilities are so easily relegated?
Silas had potential, his instructors assured me. His poor reading and math skills would limit his chances, and his fine motor skills would limit the types of welding he could excel at. But he’s creative, resourceful, and has a winning attitude. He’s kind, he works hard, and he has a strong handshake. He was told that if he just showed up to class five minutes early and left five minutes late, he’d have the credentials and letters of recommendation when the time came.
The sighs of relief and waterfalls of tears that erupted when Silas’s intellectual disability diagnosis was announced appeared again, without warning.
But this time there were tears of joy.
I had gotten everything wrong about my son, and the epiphany came not from the doctors and educators I had desperately turned to for years, but from the owner of a welding shop who wasn’t afraid to teach a slow-moving kid to play with fire.
My son doesn’t need fixing. He has a talent that not only brightens my day every day, but also brings tangible benefits to society. I just had to unearth it when no one else cared. Society needs fixing, but it’s too big a problem for one mother to handle. Still, I can chip away at the backward ableist mindset of the world, whether it’s hateful or just ignorant.
I can find a way for Silas. I can remind him that the limitations others place on him exist only in their minds. And I can ruthlessly carve that path. Woe to those who stand in his way.
Many years ago, while I was in the NICU wondering what Silas’ future held, a nurse imparted a precious bit of wisdom I’ve never forgotten: She told me that a child like Silas just needs someone to walk with him.
Not to fix them, not to change the world for them, but to just go on a journey with them.
We are just human beings, with our own trials and struggles, guiding each other home.
Anyone who would have you believe his story is a tragedy needs to do some soul searching.
But it will be a win.