No Family Is An Island

Photo: Gabor Gasztonyi

UPDATE:

Today is World Autism Awareness Day. I’m re-posting this post from Oct 24, 2011 wherein I documented our autism journey, its heart wrenching challenges. Since then our son has attended Capilano University to earn a certificate in documentary filmmaking, worked a stint at Electronic Arts and attained huge success with his RAYCEVICK YouTube channel. With half a million subscribers, he’s blowing me out of the water! More importantly, Lucas has become a fine young man and an even stronger individual.

My baby turned 17 yesterday. My baby is autistic. ASD. Aspergers. On the spectrum. Autism Spectrum Disorder, largely characterized by a withdrawn personality to varying degrees, a condition I’ve become all too familiar with, a very nuanced condition. I don’t like the term disorder. I believe there have always been autistic people, people whose neurology is wired differently, both the highly functioning and severely affected. These days it’s called “neurodiversity.”

A colicky infant, I noticed my son’s language delay around age two. I took him for a physical examination and a hearing test, both of which provided relief and positive outcomes. The next step was a visit to Sunnyhill Health Center for Children in Vancouver where he was subjected to a series of tests and evaluations by a team of pediatricians, psychiatrists, occupational therapists and social workers. Junior was diagnosed with a “moderate to severe language disorder,” which to this day bemuses me. Though late, Junior was talking, albeit not as well as his peers. Being my first and only child, I had nothing to gauge his behavior and development against. Being my son’s matrix, I didn’t detect inconsistent eye contact or social awkwardness. We were bonded, Junior affectionate.

Speech therapy was recommended and for the following seven or so years, we worked with a series of speech and language pathologists, one so horrid we turfed her after one visit. Yes, he needed to learn self-regulation but my son is a strong individual and resists regimentation, accustomed to having his rights and feelings respected. Fortunately, the last therapist was savvy and realized his needs were more complex. Ms. M suspected autism so back to Sunnyhill we went. Sure enough, after another battery of tests and evaluations by a second team of professionals, Junior was diagnosed with Autism Spectrum Disorder 299.8, anxiety disorder NOS (300.00), with a type of ADHD and mixed language disorder thrown in as well, though speech therapy was the last thing he needed. My son is not one of the roughly 30% of autistic children that do not speak. Kids on his end of the spectrum, Aspergers, are often verbose. Conversations tend to be one-sided, eccentric. Junior didn’t understand body language, subtext, inflections, the appropriateness of topics. He needed help with nonverbal communication.

As he grew, the tantrums intensified, along with sensory issues, refusing to wear seamed socks or to wet his head, in the tub, a pool or the Pacific, shampooing his hair a delicate operation. Junior was obsessed with golf, cars, computers and steam trains. Born with a beautiful swing, he idolized Tiger Woods and watched Jack Nicklaus videos repeatedly. He lined his Hot Wheel cars in neat rows and built tracks for Thomas the Tank Engine. Playing golf at every opportunity, we engineered a coveted ride on the Royal Hudson. A visiting friend-a grown man-once surveyed the crates of toys, exclaiming, “I want to die and come back as Lucas!” Aged 10, a digital native, Junior taught himself to edit video and posted machinimas on his You Tube channel. Lately he’s working on a documentary, podcasting, writing fan fiction, game reviews and a game script, commiserating about writer’s block, where once he teased about my “poor poet” status.

Over the years, we’ve navigated a maze of bureaucracy, eschewed medicating his anxiety for cognitive and behavioral strategies. We’ve tried diet regimens, biofeedback, allergy testing, supplements and struggled through a string of service providers. I believe the most effective intervention has been home schooling, which honestly, I resorted to out of desperation, not any lofty ideals. Bullied mercilessly at his new school after moving to a bucolic island, I came to realize that despite a series of meetings and consultations, the administration was utterly ineffectual at deterring any of it. Determined he would not suffer such torment, we unschooled for a month as I began my research. Soon I uncovered an entire home schooling community, which shouldn’t have surprised me, islands being havens for alternative types. We were fortunate to enroll him in an innovative program designed to support home learners, a kind of alternative school, now called Island Discovery Learning Community, two and a half days a week, providing an engaging, comprehensive IEP (Individualized Education Plan), socialization and a safe, welcoming environment.

No family is an island. With an emphasis on dynamic intelligence, Junior’s learning continues through a flexible Distance Ed program along with the guidance of our brilliant and compassionate ASD behavioral consultant, Blair Armstrong. “Autism comes from the Greek word ‘autos,’ meaning ‘self.’ The term describes conditions in which a person is removed from social interaction, hence, an isolated self.” Parenting an autistic child is isolating. I continue to field a barrage of insensitive comments. “He doesn’t look retarded.” People who know nothing about autism will volunteer, “He doesn’t look autistic.” Others deny autism exists. Certain family members reside deeply in denial. We’re grateful for Blair, relying upon his empathy and encouragement as much as his expertise, advice and strategies.

Self-esteem intact, extremely bright, my son has always understood more than he can communicate. Yes, he “looks normal.” He’s a charming, well-liked young man because he’s working hard to unlock himself, with guidance and scaffolding provided by loving parents and skilled professionals, becoming a vital member of his family and community in the process. Happy Birthday Lucas! Mommy loves you.

Island Boy

Is it cold enough for hot chocolate?
Yes. We’re baking cookies. Come and help.

The kid that insists on blueberry candy canes
would rather drive through virtual streets of San Francisco

or James Bond-jet pack
over snow drifts than join us in the kitchen.

He takes no heed of twilight until the sun
sets on his screen. He has heat. Love. Pockets

of pizza. All the bare necessities. He is beyond
baking, toy aprons or pretending

to wash the dishes, toddler hands lost
inside flock-lined rubber gloves.

Helmeted in his racing seat
before the steering wheel, our boy laughs

at vintage Looney Tunes, unaware
their blackface is racist, Porky Pig’s stuttering

politically incorrect. Where will he find ferocity
knowing nothing but canned aggression, Disney warfare?

Molokai, lost-in-time island, where he refused
snorkeling, to wet his head. He will jump

on a trampoline. Will not punch a bag.
Kick the can. Form a fist.

He will sink a 32-foot putt
but can he take a hit? No worries.

He’s happy biding island time. Happy
its moat foils the bears, bores, kindergarten foes.

14 thoughts on “No Family Is An Island

  1. A milestone for you and your son! And you write so eloquently about his life. 17 years is a long time for youth, but you put it down well in a few paragraphs.

    Hope the bonding continues, and the independence grows as he climbs towards adulthood. So much more to see and do, and to learn.

    J

  2. As an online teacher, it is not always easy to get to know our students on a personal level. Thank you so much for sharing the information as you celebrate Lucas’ ‘uniqueness’ on his 17th! – What a wonderful ‘birthday celebration’ !

  3. After reading the blog and poem I felt a warm feeling of understanding, patience and love from his mother toward the son! Although a month or so after the birthday event; I wish you and your son special birthday greetings.

    Regards Bill

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