Updated: Jul 20
My baby's brain was on fire. It took too long for Brian and I to learn that our son's, (let's call him Dylan) "colic," his insistent screaming for peace and quiet, was because his neurological system was supercharged. His neurons were heavily streaming the chemical and electrical messages, relaying them at a rate that caused him (and still causes him 9 years later) great discomfort and anguish.
My previous post, "Cry Babies, Both of Us" was a more thorough dive into the atypical behaviors of Dylan as an infant and toddler. I put ourselves on blast in hopes that it might help another caregiver to stave off the pain should they intervene early with sensory protecting gear, assuming or at least considering the possibility that her baby's "colic" or "acid reflux" could actually be a sensory integration uniqueness or even autism. Though it isn't likely, why not be assured you are doing everything possible to protect that brain on fire?
I will forever resent myself for not helping to quiet the stimuli that so bothered him. I will forever wish I had known of noise-canceling headphones, weighted blankets, and sensory swings. I will forever shutter at myself for not having used seamless clothing, swaddles, and black-out shades. Could I have protected him from the pain he, and thus our entire family, endured? Might I be offered a do-over? Or perhaps, more realistically, it should now be my mission to help other mothers in a similar predicament.
Late to Enter the School Scene
Dylan didn't enter preschool until he was four years old. We did this to protect everyone involved, as he was a challenge in many ways. It took, for example, anywhere from 20 to 40 minutes to get him strapped in socks and shoes in the morning, as he was acutely aware of any tiny fabric particle or seam touching his toes (he still is, I should add, which is why we only do sockless crocks now). Any tightness or misalignment of the sock would send him into a frantic and anxious flapping spree and that would necessitate a break, a redirection, a new set of socks, turning socks inside out, cutting the toe box off the socks, etc. The struggle of getting neurotypical kids out the door seems so trivial when you compare it to the struggles of one who panics at the sight of a school-mandated article of clothes.
As you might imagine, the socks were one of many battles. We couldn't put a comb through his hair without a chase. Brushing his teeth was like interacting with a teething alligator. Dylan only liked pureed vegetarian food at the time. He had zero desire to interact with other kids. Dylan despised noises louder than a toilet flushing. And, eloping (absent-mindedly running in random directions, usually when in a panic) was a strong possibility.
But Dylan's epic meltdowns presented the primary challenge. I want to be clear here, meltdowns are NOT temper tantrums. Temper tantrums are emotional outbursts that occur when a child doesn't get their way or doesn't get what they desire. Think, "I WANT TO STAY AT THE PARK!!!"
Meltdowns are when the neurological system is flooded or overwhelmed and the child panics or can no longer emotionally regulate. Think, "I want the pain to stop!!!" Meltdowns are NOT manipulative!
Poor buddy had anywhere from 3 to 5 meltdowns per day at that age (we're finally down to ~3 per week on average at age nine). These panic attacks usually lasted from 30-60 minutes and were all-consuming. To make a teacher or teacher's aid responsible for fielding those seems cruel to all involved.
So, we waited, thinking we'd learn the perfect strategies and eventually figure out this whole parenting thing.
On a side: Thanks to well-intended feedback from the very few people to which we sparsely subjected our tumultuous family environment, my husband and I were confident that WE were the problem. We were too permissive. We were coddling. We needed to use more discipline. We needed to better and more strictly enforce boundaries. We needed to get out the belt... I agree with some of the feedback (100% opposed to corporal punishment), but we were gentle in all ways so as to never rile the meltdowns. It was self-protection, tbh. Again...
The Diagnosis that Changed Our Course
We were finally mentally prepared for preschool prior to Dylan's 5th birthday. We still struggled with the mentioned obstacles, but the balance dipped in favor of getting Dylan an educational head start.
Our decision to put him in preschool was fortuitous, not that it was a great educational boost, but in that it helped us to see that the struggles we faced were, in fact, unique to Dylan and were, in fact, atypical.
Our lives changed forever and immeasurably when Dylan's preschool teacher pulled me aside at the end of the day to show me a capture of what she said was the norm for Dylan. The video was of the class singing, dancing, and clapping in unison. I smiled excitedly searching for Dylan in the small chorus. Miss K had to direct me to the edge of the video, where Dylan stood completely disengaged, flapping his hands wildly out of rhythm with the rest of the class.
At that moment, seeing him in this context, viewing him against the norm, is when it struck me. That was when, for the first time, I recognized his uniqueness and began to consider that, while we were far from perfect parents, perhaps we were not the direct cause of his misaligned behaviors.
Weeks later, and after the recommended observations and evaluations, Brian and I cried in relief at our IEP intake meeting as the team of experts stated the suspected autism diagnosis.
His dismissive pediatrician, the myriad urgent care and ER doctors, all the nurses, and even our family psychologist had missed it or had assumed it was apparent to us. But we had been treading water for so long, focused so hard on mere survival, that we had missed it too.
Funnily enough, when we began telling others of the official medical diagnosis that we eventually secured through a battery of surveys, observations, and evaluations through Cortica, everyone we knew was like, "oh, well, yeah, of course. We've always thought Dylan was autistic."
Through the Lens of Autism
I imagine going back in time with the information I now have. It would profoundly change the way we interacted with Dylan and others regarding Dylan. There is so much we would have done to protect our boy, our family, our daughter, and our dignity. Might you be interested in knowing what strategies we would have employed? If so, visit my website, My Village, and sign up to receive notifications of the Villager posts related to pregnancy, parenting, autism, and more. There is much more to come!