Vol 42: Inside the window pane
Just before sunset, the yellow, red and orange of the horizon are kissed by the dusk of a glooming nightfall. In those moments, light, for the final time that day, quickly but majestically peaks through the window pane. For individuals with the presence of mind to acknowledge it, those timeless, quiet and warm-filled seconds graciously offer the promise of rest. Just then, there is an ever-present regret of unfulfilled goals that’s soon replaced with the boundless hope that only a new day’s dawn can provide. But with so many distractions readily available throughout the day, unfortunately very few people take the time to truly appreciate this phenomenal evening sunlight dance.
During this time, adults are in particular focused on preparing dinner and spending time with their family. But children, and in the case of this report; one specific autistic child, can see things that we rarely do and help us to appreciate humanity in ways that we never had.
Autism is a life-long developmental disability and neurobiological disorder with many subtypes, meaning that every case is different. But for the most part it represents a broad category of conditions wherein children, along a spectrum, face challenges with reference to social skills, speech, repetitive behaviors and non-verbal communication. The World Health Organization estimates that one in 100 children worldwide have autism. In the US, the rate is far greater, measuring one in 34 boys and one in 145 girls. Similarly, in The Bahamas, boys are four times as likely as girls to be diagnosed as somewhere along the spectrum.
What’s even more of a challenge to the WHO and the Centers for Disease Control is determining the cause of this steady climb in numbers. Despite their best efforts, discovering the etiology of its development continues to elude researchers.
The patient discussed in today’s report, hereafter named Rosie, gave birth to her first son, Joe, at the age of 33. She, her husband and their extended family all enjoy optimum health, are not on any medications and have never undergone any previous surgeries. Joe was delivered via C-section at age 37-weeks.
Rosie monitored him closely with the loving watchful eye of a new mother and soon started to notice deficiencies that others, including his pediatrician, were quick to dismiss. She first noticed that he couldn’t clap or use other hand gestures but because he made good eye contact no one but Rosie considered this concerning. He additionally exhibited feeding and swallowing hindrances and would often gag, choke and vomit if his food wasn’t perfectly smooth.
Rosie, sensing that something was wrong, began researching possible causes, which is when she recognized that her son displayed other characteristics pathognomonic for autism like an intense visual inspection of objects and repetitive blinking when overwhelmed. He’d sit for hours tearing pieces of paper into neat strips. Other than those behaviours, and showing little interest in playing with other children, there were no overt symptoms. He didn’t walk on his toes. He responded when called.
By age two, however, his delays became more pronounced.
At this point, Joe was still non-verbal and would look at his mother’s finger rather than at the object that she was pointing to. Rosie remained hopeful that enrolling him in school would augment these deficits. It took a while for him to start school because he suffered with severe separation anxiety and he was unable to attend until one month after he turned three.
Unfortunately, six months after starting, schools were shut down because of the Covid-19 pandemic. Over the phone and shortly after shut-down, one of the school directors advised Rosie that she suspected that Joe had autism. Rosie had mixed emotions. On one hand she was relieved that someone else saw the signs that she’d been seeing, but on the other hand she and her husband were heartbroken. They were also afraid that with school, speech therapy and occupational therapy now closed, Joe would regress.
Months later, after several restrictions were lifted, Joe was able to continue with therapy. His speech didn’t improve so Rosie sought advice from another mother in her community. Based on her advice, she and her husband enrolled Joe in applied behavior analysis (ABA) therapy five times per week where among other topics, he’s taught self-help, daily living, social, motor and communication skills. From the time he started, his progress has been absolutely amazing. He’s developed functional speech and now exhibits basic joint speech. Joe was non-verbal until the week before he turned four so the first time he said his mother, father and grandmother’s names was an incredibly emotional celebration.
Understanding that his speech will remain limited if he doesn’t have the words to express himself, Rosie has doubled down on his therapy by teaching him vocabulary at home. Although his speech is not yet fully developed, his vocabulary is on target for his age according to his latest assessment and he’s now able to express his preferences, feelings and thoughts. Recently while it was raining he commented that the clouds were vomiting. He describes the music in his grandmother’s car as sleeping if she forgets to turn the radio on.
It helps that he has a community of support from his parents, grandparents and his two uncles. Rosie also credits the non-profit organization R.E.A.C.H. for providing free services like summer camps and speech therapy to families with autistic children, particularly in The Bahamas where the services are not readily affordable and, in most cases, simply unavailable. Rosie admits that she’s learned a lot throughout this process and takes nothing for granted. Now that Joe is five, she acknowledges her own development. Over the years she’s accumulated boundless reserves of strength, sensitivity, patience, resiliency, understanding and compassion.
The take home message that Rosie wanted to impart is that people with special needs have a lot to offer. Early diagnosis and intervention improve outcomes. They may require more assistance but their lives are just as valuable as any other. She poignantly reiterates a quote from autistic professor Temple Grandin that people with autism are different but never less. Her message to other parents of autistic children is that even if things are difficult, they will improve. Rosie and her husband now have another son and they’re watching him closely for any developmental delays.
Joe is a very picky eater. He doesn’t like small spaces, crowds, haircuts and thong slippers but he loves ice cream, chocolate milk, music, going to the beach, being outdoors, the ‘Despicable Me’ movies and he loves his brother. People often assume that autistic kids are not loving and affectionate but Joe has a sensitive soul. He loves hugs, kisses and cuddles and often says I love you with excitement.
Throughout the course of my career, I’ve had the privilege of meeting, interacting with and treating several autistic children. It’s taught me patience, gratitude and how to stop, examine and appreciate my surroundings. Case in point, one of my autistic patients would often stare out my front lobby window. After three years, on an early evening after we closed, I knelt on the floor to try and imagine what he was seeing. I assumed a bird would pass by and capture my attention but as I got closer to the floor, I saw the most amazing light display bouncing off the silver-polished window pane.
It felt biblical because it reminded me of the rays of light shining through the stained-glass windows of my church during morning mass. He saw and marveled routinely at this miraculous display, which was so easily ignored by all those around him. Now every day as the warm, near-eclipsed, light bounces off that same window pane, I remember that rampant beauty is all around us if, with an open heart, we simply have the will and the courage to find it.
This is The KDK Report.
