EDITOR’S NOTE: This was initially a lengthy text that came across my men’s team thread in July 2023. My teammate Frank Scura took that text and added layers and layers of rich content – his account of traversing any barriers in raising and loving a child with autism: his boy Lakesh.
I’m a single father with two children. My son Lakesh was born on March 8, 2004. We had him at home. After my wife endured an arduous and complex 36 hours in labor, my son entered this world, and I caught him in my hands.
After a few hours of him not suckling and a constant sounding of distress, we transported him to the Oakland Children’s Hospital. They ran tests, said he was fine and recommended we give him a bottle of sucrose (sugar water) and then take him home. As we were checking out my sister-in-law (who was in nursing school at the time) cried out in terror, “He’s turning blue!” He had no swallow reflex and the liquid went straight into his lungs.
We freaked out; the hospital staff freaked out.
He was admitted, and we went on a 3-week roller coaster ride in the Intensive Care Nursery. Our families and friends flew in from around the country to support us. We had a 24-hour team of caring individuals sitting with him, reading, singing, doing puppet shows and letting him know that he was welcome in this world.
On the medical front, the doctors and nurses were kind and flexible, even when we wouldn’t budge on breaking the hospital protocol by demanding that we had people with him 24 hours a day.
Lakesh was misdiagnosed daily, drugged, given a spinal tap, poked, prodded and never given a diagnosis. In the end it was the introduction of his mother’s colostrum and breast milk through a feeding tube that turned the tide. He was later diagnosed with severe autism and ataxic cerebral palsy, which explains the lack of ability to swallow as a newborn.
What does all that mean now? Well, in many ways autism, like the multi-colored puzzle pieces that have come to represent it graphically, comes in a vast and diverse array of symptoms, behaviors, and impulses. But most importantly, it manifests as a pandoras box of complex variables that comprise an existence likened to an “ALIEN” human experience for the individuals subjected to hosting it.
Autism can manifest in a multitude of varying, diverse and complex combinations resulting in a savant-genius experience akin to Dustin Hoffman’s card-counting “246 toothpicks” scenario in Rainman. Or it can be like my son Lakesh, who is among the greatest minority, with his duel diagnosis of autism and cerebral palsy, which renders him non-verbal (making every communication a game of charades). It also compromises his motor skills, which means holding a spoon is like eating with a weighted shovel, where every meal looks like the aftermath of the food fight scene with John Belushi in Animal House!
He is a true anomaly, the weirdo among the weirdos in the eyes of the world and even others with autism.
This plight renders him incapable of virtually any self-care for dressing, teeth brushing or bathing himself after the numerous daily urination or defecation experiences in his pants or bed. He requires assistance and supervision all the time and with every and all things. He is compromised yet mobile enough to smear, smudge, drip or destroy everything, everywhere, anywhere all of the time.
Think of a 200-pound toddler, still biting, scratching, pulling hair, bolting after an elderly woman to grab at the jiggly skin under her chin, or a baby lying helpless in its carrier, or darting to run into traffic, jump into the van of a serial killer or walk off a cliff. Not to mention the 3-13 loads of soiled laundry daily that requires hand scrubbing out fecal matter and urine prior to putting it in the washer.
All of this is true, but so is the fact that my son is misunderstood, tender and loving, beautiful, enlightened child of God.
He has the best sense of humor of any human I’ve ever met. He will literally burst out into soul-screeching uncontrollable laughter at some point most every day. He sings all the time, loves rollercoasters, the wind in his face and hair, and he absolutely thrives in water. He loves family and his greatest wish and longing in this world is for nothing more than friendships: a wish that to this point has been so far out of his reach it might as well be Mars.
Sure, he has had caregivers throughout his life, but they come and go. He’s had teachers, some of our friends and people that care about him … but he’s never had a playdate, a friend or a deep interpersonal relationship he has cultivated and can call his own.
There is much joy, but also such heartbreak that comes with raising my son: to see a person you love so much walk through life as a pariah in public perception, like a monster who longs so much for friendship, but is misunderstood and driven by uncontrollable impulses that cause him to bite or lunge at someone he’d like to meet, when all he wishes to do is embrace them. If people would take the time they would realize that he is not much different from the rest of us in that way. Ask the alcoholic, the drug addict or the obese person if they’d like to have control over their destructive behaviors. We all deal with impulse-control issues, but my son’s are intertwined in a murky dungeon of obscurity.
My son understands everything being said to him and around him. Sometimes I ponder his quandary and I try to imagine what life must be like for him, to know what you think and want to say, but when you strive to articulate it, out comes a jumbled salad of partial sounds and out-of-context expressions held back by a barrier that won’t allow you to make sense of it all.
There is a native proverb that says, “Never judge someone unless you have walked a mile in their moccasins.” I think to myself, if I had to endure what Lakesh does, I would walk off a cliff after 100 feet. I know his plight intimately; he and I are connected umbilically. Sometimes I’ll have deep conversations with him when I know something profoundly emotional has gone on that he can’t express.
I’ll speak to his heart.
I will see his humanity and attempt to communicate for him to acknowledge that I see his soul, his joy, his suffering, his interpersonal experience that he cannot express. And he will look into me with his psychic soul seeing eyes, he’ll pull me in close to hold me, embrace me (without biting me) and physically express his gratitude for being seen, understood and cherished.
Imagine life as a prison cell, imagine your mind as a maze of tricks and traps … imagine your life lived as Lakesh Luigi Arzelo Scura.
And then imagine a momentous day and moment like I had on July 3, 2023…
My sister Lois and I dropped Lakesh off for his first day of school at the Stein Education Academy seven minutes from our home here in San Diego. Wow. What a journey in “surreality” – today will be his first day of school for Lakesh since we arrived from Sebastopol in our move to San Diego on July 3, 2021, exactly two years to the day.
COVID changed everything. Prior to that Lakesh had been at his Cypress School in Petaluma since he was 7 or 8 years old. Cypress was an amazing school, and the staff there was ride-or-die with Lakesh. He was at times described as one of their most challenging students, but they never gave up on him and always saw and encouraged his best, took him out on adventures to Whole Foods, the park, surfing and even some fairs and amusement parks. They would often say that Lakesh was the hardest working kid they had ever met and he loved it there. His mother and I had our moments at odds, but for the most part we shared custody of both of our children 50/50, each supporting each other as exemplary co-parents … especially ones with a special needs child.
And then there is my daughter Elkannah. I could write a novel espousing her virtues and a series of books in poetic prose illuminating her as literally the perfect child/human/daughter/sister/friend.
Elkannah is 16 going on infinity. She is my rock and grounding, the voice of reason if ever I lose my shit, and the perfect sister to her brother. In an attempt to summarize the anomaly of her as part of this modern generation of instant-gratification-driven Tik Tokers, I can say without reservation that she is self-determined and gets straight A’s in school through her own volition and self-governance. She assists with chores around the house, she fills our home with music, joy and laughter, she never lies, cannot understand the concept of deception, honors her word, communicates kindly, sees the best in others, is compassionate, has impeccable sportsmanship, yet competitive in a healthy way. She is versed in self-reliant skills, from making and shooting bows and arrows to hide-tanning, woodworking, hand-sewing, needlepoint, cooking, and felting. With a strong work ethic, admired by her friends and mine alike, she is a phenomenal artist and musician who works in multiple mediums.
But what I find most astonishing in this day and age isn’t that she will clean the fecal-filled sheets and the soiled clothing of her brother without a murmur of complaint. It is that she chose to leave her lifelong friendships and community to begin a new life here in San Diego for two important reasons: for more family and community support and because she refused to abandon her big brother. I still shed tears in this moment with pride and a profound understanding of the magnitude of what she has chosen to give up for her love for her brother and I. It was her choice, and nothing could’ve diverted her from making it.
Puberty and Beyond
Lakesh had a hard puberty and became aggressive and much more difficult to manage as he strived to navigate the complex emotions and desires that came with the increase of testosterone surging through his body and controlling his mind and impulses. This cost him his most cherished relationships with those who were the anomalies in his life who would give him overnights or expended visits and adventures. His sages, my sisters Mary and Nancy, as well as Nancy’s husband Ron, his Grandmother Vicky and Grandpa Lee who took him over night every Wednesday, and last and most devastatingly, his mother.
Lakesh’s mother had found her perfect love, and as Lakesh’s behavior escalated, her fear of him destroying her relationship became more pronounced. So she became more and more aggressive in pushing for and pursuing outside home placement for him, which I opposed. Not just because I won’t abandon my son nor give up on assuring that he is protected and living a loving home environment, but because I did my own vigilant research on housing care options for him. And I found the only options for Lakesh as a minor, with violent behaviors, untrained in toileting and in need of constant complex care and supervision, were state mental care facilities. If I were to describe one of these facilities, I could only say that for Lakesh, it would be akin to “hell on earth!”
Needless to say, here we are.
Lakesh has been out of school for the better part of four years due to the COVID debacle. And worse, in its aftermath. four non-public special education schools have closed down in San Diego since the beginning of this year. It was as though aliens abducted the mass-majority of people who served our special needs and elderly communities.
For Lakesh it meant his primary occupation of time, socialization and stimulation was gone virtually overnight. Other factors: his mother moving on and not spending any real or consistent time with him, a completely new environment, little to no support for the first year we moved here. It all has taken its toll on my beautiful son’s soul and all of us who strive to support, care for and love him.
For months, when we first moved to San Diego, Lakesh would not sleep all night and only sleep a few hours in the day. He was delirious, violent, destructive and explosive, suffering from sleep-deprived psychosis. My daughter and I were on our own caring for him. I was on guard with Lakesh and barely sleeping myself, meanwhile protecting Elkannah, preparing her lunches and driving her 30 minutes each way to school each day. My mind was pushed to the brink of its sanity, and my ability to bounce back was stretched to its limits.
A New Day – July 3
But today is a new day, He went to sleep at 9 p.m. last night and slept through the night, I really didn’t sleep at all, my heart racing and my mind abuzz with a toxic combination of hope and all that could possibly go wrong. I got up, made his lunch and snacks late last night, got him up at 7 a.m. He told me to go away and slammed the door in my face, but in a cute way. He bathed himself, a recent miracle that requires auxiliary clean-up so I did the finishing touches, made him a big breakfast and smoothie, made him some spinneys (little gold beads on an elastic string keeping him grounded), got him dressed, drove him to school. And we had a smooth transition. Whew!
Now I’m sitting in my car writing this, I can’t even describe the breadth of emotions circulating through me right now, I honestly don’t even know what to do with myself. It’s a new day, I’m nervous, a little in shock and super excited to start working, surfing, playing pickle ball and actually being social with friends and family with my five hours a day of free time. My biggest challenge is in remembering what it is to be a human with free time, experiencing life. I don’t recognize myself anymore, a once social, powerful and effective warrior, I now ponder the complexities of simple socialization and the foreign concept of having time on my hands.
It has literally been years.
Elkannah left yesterday for a month up north with her mother and much deserved time with her friends. Her three best friends from Sebastopol came to San Diego and stayed with us here in our home for the past nine days. That was great! I miss the heck out of those little ladies, I’ve known them all their lives. They have always filled my homes with consistent laughter and wonder. They honor me and love Lakesh dearly. They fill my heart and see me as a second father to them. I am so proud of the women they are and that they becoming. They are great humans with wisdom beyond their years and a closeness between them that anchors them to the roots of their power.
But now there’s a void and a sadness washing over me as I sit with the sobering reality that I will be without my amazing daughter for a month. I want her to feel all of the joy it means for her to go back to her roots, to be in the community and kinships she has known for the entirety of her life.
With all of that said and felt, here’s to the blessings and the prayer that Lakesh’s cup is filled by this new community and the potential realized for friendships forged within it.
This has been a surreal journey that has pushed me to the brink of my sanity and to the depths of my heart for the past four years and the 16 before that. I owe a lot of thanks to those of you who have showed up in friendship and above and beyond in some of the most challenging moments of my life.
Here’s to new beginnings.
Let love reign supreme.