Tag Archives: Aspergers

No Family Is An Island

Photo: Gabor Gasztonyi


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 Autism Spectrum Disorder, largely characterized by a withdrawn personality to varying degrees, a condition I’ve become all too familiar with, a very nuanced condition.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 Continue reading




This is a difficult subject, raising a child on the autism spectrum, especially painful in the wake of Newtown. I was heartbroken by news of the tragedy and dismayed to learn the shooter had Aspergers.

I felt both great empathy and unease watching the PBS Frontline documentary, Raising Adam Lanza, about the relationship between Adam and his mother Nancy. Though experts agree individuals with Aspergers are no more prone to violence than people without the developmental disability, I worry the public will characterize kids on the spectrum as aggressive, a huge setback in hard won autism awareness.

My son is two years younger than Adam Lanza and finding a proper diagnosis was a long, arduous struggle, finally achieved at age 10, about the same age Adam was when he was diagnosed. Initially Junior was erroneously perceived as having a “moderate to severe language disorder.” I still don’t know what the heck that means but he received years of speech therapy, which as it turns out was the last thing he needed, being highly functioning and beyond verbal to the point of verbose. It’s body language he doesn’t get. More details on this and our desperate search for information are at this previous blog post and the only other time I’ve publicly addressed my son’s ASD.

Adam Lanza had initially been diagnosed with SID, Sensory Integration Dysfunction, also known as SPD, Sensory Processing Disorder. It’s not a recognized diagnosis nor included in the DSM-IV-TR Diagnostic and Statistical Manual of Mental Disorders. As reported by Susan Donaldson James, “Whether SPD is a distinct disorder or a collection of symptoms pointing to other neurological deficits, most often anxiety or attention-deficit hyperactivity disorder (ADHD), has been debated by the medical community for more than two decades.” Adam Lanza’s lifetime.

My son’s sensory issues were well documented, considered part of his ASD and certainly challenging. He abhorred particular fabrics, ripping out tags and discarding the socks with “stupid seams.” Refusing to wet his head, hygiene was a serious concern. It took years to overcome his anxiety and get in the shower on a daily basis but he still doesn’t know how to swim and refuses to take lessons.

Unlike a lot of kids on the spectrum, our son’s motor skills were fine. He began walking at 10 months, was a prodigious golfer with a beautiful swing everyone envied. Though shy with strangers, he had no problems with physical contact and was always affectionate with family. He’s less demonstrative as a teenager but if I ask for a hug, he delivers a hug with no qualms.

I may seem anxious to point out how my child with Aspergers is different from Adam Lanza, but because it manifests in a seemingly random but singular fashion, every child on the spectrum is different. Unique. Our choices, options have been dictated by how ASD has affected our child.

I got the impression mother and son were becoming Continue reading

Aspiring snow birds fly the coop

Obamamania. Inauguration fever. Last day of the Bush regime! Exit interviews? As one of the fortunate survivors of race riots, the LA riots of 92, which seem like only yesterday, this day is very meaningful. Like so many other people, I never thought I’d live to see it.

Josef and I had coffee poolside with my dear friend and fellow poet, SA Griffin before we left LA. We discussed Bush’s absurd farewell speeches, the things he wants people to believe he accomplished as opposed to what really happened. Certainly he is trying to hack the media, the way his legacy is portrayed. I’m more inclined to listen to Keith Olbermann’s Eight Years In Eight Minutes. I don’t understand how Bush got away with all the despicable things he did!


SA gave us several handsome posters of a poem he wrote commemorating Obama’s big day. We said we would be happy to distribute some in Canada and told him about the election night party we had on Bowen Island with its significant population of American expats. At one point, SA got up and gave a poster to a fellow who entered the lobby sporting an Obama-PROGRESS shirt. It seems the entire world is excited, hopeful at the shift in paradigm and it is my hope the world is able to stop hating America. Progress is being made, a characteristically American drive.

I was chatting with a friend this morning who has dual citizenship. Born in Montreal, adopted and raised in New York-Queens-I met Debby in Vancouver, then ran into her in Los Angeles after we had both relocated. We spent years painting the town red together and she is the inspiration for my poem, Three Blocks West Of Wonderland. I told her that I often miss my American friends and have so much fun when I’m down south. The people are generous, vigorous, expansive. After I hung up, I came across a funny article in the Vancouver Sun by Dan Gardner, called Get Over Yourself Canada, If this country were a teenage girl, she would be in for years of therapy which stated many of the things I had bitched to Debby about, including pettiness and parochialism. I am determined to buy a house in the California desert some day and winter there right about the time of year this place is at its darkest and coldest and it’s not just the climate that I am referring to. Perhaps geese aren’t such bird brains after all. Doesn’t it make sense to go where the food and good times are? Follow the sun? Screw borders. I’m a citizen of the world.

SA also has a son who is Aspergers so we share much empathy for one another. He has some interesting theories, Continue reading

Recovering, from the big three

Blowing, wet blustery day, autumn here big time weather wise, as I drag my butt around, feeling tired, achy and sore from the tetanus shot but starting to be able to use my foot again so that is good. Someone said, “Well the nail in the foot was the third bad thing that has happened” so I am hoping she is right and I have earned a reprieve somehow and things will level out soon. To reiterate, #1 was my sister’s death, # 2 was Peter’s murder. Guess I needed some physical pain to match the emotional pain of loss and grief and do things really happen in threes or is that a lot of hooey?

When it rains it pours and it’s pouring in my life but it’s my own fault as I keep on taking on more. So many projects but I know I have to work in more than one media because if I didn’t as I said at the Word On The Street festival during my reading, I would go nuts. If I was relying only on print, which moves at a glacial pace, I would be so frustrated! I am working with video and music and at least I have some control over those kinds of projects. Still, that means I have a lot of irons in the fire as they say, in addition to raising my son with special needs. On that front though, I am feeling encouraged because I think we may have finally found a service provider, an RDI (Relationship Development Intervention) specialist that we can work with to help Junior. We had attended the RDI symposium with Steve Gutstein last year but there were no practitioners available in the Lower Mainland. I hope it works out. I have learned through trial and error that a lot of this stuff winds up being pretty ineffectual, that many of the experts are talking through their asses when it comes to the child, your child, with his or her unique, individual profile and needs. It’s hard not to be bitter about the fact too that he was misdiagnosed as having a “moderate to severe language disorder” when in fact he was Aspergers all along. That diagnose did not come until he was ten. I knew something was not quite right with his development from the age of two but I am no expert.

Peter still enters my thoughts often as I take care of business, cronies of ours emerging to ask if I’ve heard the news. Yes, and where have you been? Up until this point most seemed determined to remain in the past but I suppose their curiosity is getting the best of them and now they want to know what I know which isn’t much. I do know that the investigation will remain closed, whether the police or the DA’s office believes Bruce’s story or not. Still, it is not over and I am interested in seeing what develops in the near future.

Swamped lately for in addition to aforementioned projects, I am embroiled in my curating work for Pacific Cinémathèque and SEE THE VOICE: Visible Verse, the annual screening event of poetry video and film that I host each year, culling 27 works from 65 submissions from around the world Continue reading