The Diagnosis Diaries: Making the Invisible, Visible

Colton and his Brave Journey Through Childhood Apraxia of Speech  Colton is a bright, funny and determined little boy who has already weathered more than most adults ever will. He’s full of curiosity, always asking “why,” loves to draw and build, and has a laugh that’s truly contagious. But behind Colton’s smile is a long list of diagnoses that he carries with incredible strength and resilience. Here are the medical and developmental conditions Colton lives with: Childhood Apraxia of Speech (CAS) Phonological Speech Disorder Language Disorder Sensory Processing Disorder Auditory Processing Disorder Congenital Hypothyroidism Mild Cerebral Palsy Autism Spectrum Disorder, Level 1 And due to whole genome sequencing is at risk for developing epilepsy and type 2 diabetes. That’s a lot for one little boy — and a lot for us as his parents, teachers, and doctors to consider in supporting him. But let’s start with the conditi...

Red, White, and Just-Right: Finding Our Fourth of July Rhythm with Colton Colton loves the Fourth of July. In fact, it’s his third favorite holiday. He loves the colors, the flags, the idea of celebration, and most of all—he loves fireworks. But not the crowds. Not the noise. Not the overstimulation that comes with packed parking lots, booming speakers, and fireworks exploding right overhead. When he was little, we tried taking him to a few big, city-run firework shows—back before we fully understood his diagnoses like sensory processing disorder. Like many new parents, we were eager to experience the tradition: a blanket on the grass, glow sticks in hand, and the classic “oohs and aahs” under the night sky. But for Colton, it quickly became too much. Every time, we had to leave just a few "oohs" in. The crowds, the loudness, the waiting—it was all just overwhelming. He would flip out, and we’d make a quick, heartbroken exit. We felt disappointed—not in him, but that our lit...

Speaking Up for the Quiet Signs When we think about autism, many of us imagine certain clear signs: a child who avoids eye contact, doesn’t respond to their name, or doesn’t smile. These have long been seen as classic “red flags” that prompt evaluations and early diagnosis. But what if your child does have some of these behaviors? What if they smile, respond to their name, and even make eye contact — yet still struggle deeply in ways that aren’t immediately obvious? The Signs That Didn’t Fit the Script My son Colton could do many of the things people typically think rule out autism. As a baby and toddler, he smiled. He looked at people. He would often turn when his name was called. He even passed his 18-month autism screening with no concerns flagged. But everything shifted around age three, when he experienced a speech regression and lost all of his “real” words. When I brought up autism as a possible explanation, I was told, “Well, regression can be a sign of autism,...

Mother. Advocate. Fighter. I never expected to become a fighter. But motherhood changes everything. My name is Stephanie, and I’m the mother of an extraordinary little boy — Colton. He’s funny, gentle, brilliantly unique, and full of curiosity. He also happens to be autistic, with multiple complex medical and developmental conditions that took years to fully uncover. Once a business professional in corporate America, then a 6-figure entrepreneur, I currently find myself a full-time medical mom and advocate for my child.  advocate /ˈad-və-ˌkāt/ (noun) 1. A person who publicly supports or recommends a particular cause, policy, or individual. Example: She became a passionate advocate for autism awareness. 2. Someone who speaks or acts in support of another’s needs, rights, or interests, especially when that person cannot easily do so themselves. Example: As a parent, he served as an advocate for his child in medical and educational settings. It started with a simple comment...