HayU Blog

Around a year and a half ago, we received our son Koimburi’s autism diagnosis. He was 18 months old. What we thought would be a routine checkup to address his months-long speech regression turned into one of the most significant curveballs of our short parenting journey. I remember my wife, Ellie, relaying back to me the conversation she had with the doctor. I remember nodding attentively and carefully matching her intonations of worry and optimism with my facial expressions as she spoke, but never fully allowing the significance of the message to be fully processed in heart and mind. 

Over the next few days, I did start to process the weight of the words. "Interventions," "more testing," " behavioral therapy" - none of this matched the parenting journey I had imagined. I felt wholly unprepared for what lay ahead. But - I also remember that Ellie referred to it as "mild autism," a result of a "tentative diagnosis" and "possibly reversible" if our son managed to close the gaps and meet his developmental milestones. 

Although now we’ve come to see these concepts quite differently, at the time, these words gave me hope. I was working as a key instructional leader at a respected educational institution, Lindamood-Bell. I led nation-wide trainings on educational interventions for autistic children. I could do this! Maybe, just maybe, I had spent the last five years of my life getting ready for this very assignment. The timing felt perfect.

Armed with this self belief, and buoyed by the optimism that this could be a reversible diagnosis, I steeled myself for the task of being Koimburi’s personal teacher. He and I spent hours holed up in his room, as I tried to get him to identify different animals, colors and shapes. While he was compliant through it all, he never shared my passion for this project. He showed little to no interest in interacting with me in this way, and in a few short weeks, my vibrant optimism calcified into a hopeless resignation that I was failing my own son. 

I was loath to admit that there were others more capable of teaching him or that there were other methodologies that were as efficient as what I specialized in. Nevertheless, I begrudgingly agreed to enroll him in speech and applied behavioral analysis (ABA therapy), all the while poking holes in the methodology of each. 

Ellie, on the other hand, embarked on a different journey as she processed the news. Rather than looking to teach, she sought to learn. She immersed herself in the vast autism community on social media and connected deeply and vulnerably with other moms of children with ASD, forging lasting friendships. She made it a priority to listen to the voices of adults with ASD, hear their stories, and learn about their life experience so as to better understand our son. Ellie quickly understood a key truth that took me months to realize. Our son is autistic, and because of this, the experts on much of his life experience are other autistic people.

To be clear, I firmly believe that my wife and I know our son better than anyone else. We have spent every single day with him, we have watched him grow, we understand his many quirks, we can interpret his mischievous giggles and we have learned to interpret whether his squeals issue from delight or anger. But as neurotypical adults, our brains are wired in ways that are fundamentally different from his. His perception of his surroundings and the sensory experience of his life are vast landscapes of his world that we have never traversed. We will do well by him to learn from those who have walked these plains all their lives. 

This realization moved me from a resigned hopelessness to an optimistic eagerness to learn. I now see every interaction with my son as an opportunity to learn from him, an opportunity to understand him for who he is, as opposed to comparing him to the neurotypical children he is not. I now feel free to be a parent, who is learning and loving their child for who they are. This turn in my journey has allowed me to see how much he can teach me about himself and his world, if only I can be open to listening and learning.

One of my favorite lessons from my son so far has been being mindful and present in the midst of a hurried world. He and I love doing his nightly routine together. I give him a bath, get him dressed for bed and detangle his hair before putting him to sleep. During this hour or so that we spend together, very few words pass between us, and I have found this time of mutual silence to be unspeakably helpful. I have come to appreciate how much he enjoys connecting with me through physical closeness and contact. I have learned to eschew words and language as the only way to process my world and to stop my restless mind from internally monologuing as I verbally process every aspect of my day. I have learned, for that hour, to instead enjoy the calming sensations of warm bath water, to focus on the methodical untangling of his curly locks and to treasure every reassuring bit of the pressure of a final hug before bed. 

These are experiences that I am prone to miss in my language-heavy, neurotypical world. In focusing more consciously on these experiences, I have started to appreciate more of his world, and how full and vibrant it can be. I have learned to parent and educate, out of an appreciation of the fullness of all that my son is. 

~Hunja Koimburi, M.A. 

Director, Hayutin Education