Some truths don’t arrive all at once. They settle in slowly, like water rising around your ankles- subtle at first, then impossible to ignore. One day, you realize your child will never be independent- not now, not later, not ever. That the care you give today will not ease with time but instead stretch endlessly forward. This is the weight I carry as I raise my son, Jayce- a child full of light and complexity, who will always need full-time support. It’s a love without limits, yes. But it’s also a future shaped by fear, exhaustion, and quiet kind of grief that never fully let’s go.
Since Jayce was about five, we slowly began to arrive at this place- this understanding that his future would look very different from the one we were working toward. We continued with the strategies and interventions, hoping with enough effort, enough support, he’d eventually gain the skills to catch up.
But progress never came the way we hoped. And deep down, I started to feel something wasn’t adding up.
Then, finally, at age ten, we sat through another assessment, and for the first time, someone gave it to us straight. No sugar-coating. No “maybe if.” Just the truth: Jayce is severely intellectually disabled.
And while it was heartbreaking, it was also kind of a relief. Because I already knew. I had been carrying that truth for years, second-guessing myself every step of the way because professionals kept telling me to just keep pushing harder. They just saw a boy that had autism. But this time, someone met me where I already was. Someone saw what I saw.
That same assessment also confirmed something else I had long suspected- that the root cause of Jayce’s intellectual disability and deafness, was likely a brain injury from congenital CMV (cytomegalovirus), either in utero or in early infancy. He wasn’t tested for it at birth. Jayce was born in Calgary, Alberta and the year he was born they were not performing newborn hearing screening in the hospital. If they had, they would have tested for CMV after he would have failed that hearing test. Antiviral medications could have been used to reduce the risk of hearing loss and potentially improve developmental outcome. Early intervention services and ongoing monitoring would have been crucial for supporting development. Unfortunately for Jayce this was not the case for him.
That knowledge adds a painful layer to everything. Deafness alone, even without any other diagnosis, can profoundly shape a person’s life. It’s not just about hearing loss; it’s about how you access language, how you connect, how the world either includes you or doesn’t. For a neurotypical child, deafness can already bring isolation, delays, and challenges with mental health. For Jayce-who is also intellectually disabled- it adds another layer of complexity to everything. It affects how he learns, how he communicates, how safe he feels, how he moves through every part of his day. and yet, its treated like just another bullet point on a long list of diagnoses, when in truth, it colors everything.
And because of that, we’ve lived for years in a fog of uncertainty, trying to piece together why things happened the way they did. To now have that confirmed, is another kind of grief- not just for what is, but for what could have been different if it had been caught sooner. If hospitals had done due diligence.
Now, I can’t help but question everything. Is everything were seeing simply the result of the brain damage he experienced early on? The lines blur more than people like to admit. So many of the traits that fall under autism- his sensory sensitivities, his communication difficulties, the way he processes the world- could just as easily be explained by injury to the brain. It doesn’t change how I care for him, or how much I love him, but it leaves me sitting in a place of uncertainty. I hold multiple truths at once: that he is complex, that diagnoses don’t always fit neatly, and that what matters most is seeing him clearly- not the label, but the person.
I feel deeply failed. He didn’t have his hearing tested at birth. He was then not tested for CMV. His deafness wasn’t met with urgency or the tailored intervention he needed. His developmental delays were never treated as a serious concern. We were given inconsistent follow- through, and passed between professionals who didn’t know how to support a child like him- a child who was both deaf and developmentally delayed. And those early years matter. He was supposed to have a follow-up from his autism assessment when he turned six. But of course, there was no urgency- not for Jayce, not for his struggles. We finally got our answers at ten years old instead. I will always carry the weight of that lost time- not because I didn’t fight but because the systems meant to support us failed him.
Now I advocate for Jayce to still receive those early interventions- because developmentally, he’s not ten. He’s more like a two-year-old. He needs the same foundational supports any toddler would need to start building communication, connection, and understanding. But the system doesn’t work that way. Because he’s almost eleven on paper, he’s expected to fit into programs meant for preteens- programs that assume a level of comprehension, language, and independence that he simply doesn’t have. And the services that do exist for young children, the ones that might actually help him now, are closed to him because he’s “to old.” It’s like falling though a crack that was never meant to be there. The system can’t-or wont- bend to meet him where he is.
Now, this is our reality. Not the one we were told to chase, not the one built on maybes and milestones that never came- but the truth. And with the truth, we can finally begin to see more clearly. Were no longer pouring energy into trying to change who Jayce is, but into understanding him better, advocating for him more effectively, and building a life that actually fits him- not some version of him that others hoped would emerge.
The truth came with devastation- a new wave of grief that knocked the wind out of me. but it also brought something else: a release. We don’t have to live in the in-between anymore. Jayce is exactly who he is. And now that we know- really know- we can meet him where he is with more compassion, more purpose, and more strength. The weight of forever is still heavy, but at least now were not carrying it in the dark.
Jayces Journey 