Of Undersea Strolls and Reflections

I have never been one to be intimidated by another person’s talents or abilities. After all, each of us holds a different piece of the puzzle called life. Some of us have a corner piece or a side piece or a middle piece and some of us have more than one piece. But rest assured that all of us have at least one piece of the puzzle.

Lewis at 14 and with all the health issues that have thrown obstacles and challenges in his way as he travels this journey we call life never ceases to amaze me with his talents and abilities. Whether it’s creating computer generated art, composing with loops on a computer, writing short stories and poems, researching and recording YouTube videos or painting the old fashioned way with brushes on canvas board, Lewis expresses himself in ways that take my breath away.

You see, he has a refreshing and unique take on life overall and so everything he creates has this same refreshing and unique take on life.

A few weeks ago, he and I sat at the kitchen table painting and talking about this, that and the other thing.

My style is to anguish over every brush stroke, striving for perfection as I understand it to be, focusing on every little detail and blending colours so art lovers can feel the texture implied by the paints. Lewis’ style is to grab whatever brush feels right, swoosh about whichever sponge his hand falls upon, smoosh colours together in wild arcs created by his fingers nail deep in acrylic paint and to talk about what matters to him regardless of whether it relates to what he may be painting at the time.

When all is said and done, he pushes himself away from the kitchen table and smiles. This means that the first part of the painting has been completed. He tidies up his area, hugs me and then disappears to his room to create something completely different on his computer.

Meanwhile, I have completed a small area perhaps 1 inch by 1 inch in the same time it has taken him to paint the entire first part of his painting.

The next day, the lines that are missing from his painting are added and that’s when the brilliance of his style shines through. If you’ve ever wondered what goes through the mind of an artist, welcome to the club. I have often wondered what goes through Lewis’ mind when he is painting furiously and fervently in this way.

What I never wonder about is how interesting the end result will be. In fact, sometimes when I think I know what the painting is all about I come to the abrupt realization once the lines are added that I had absolutely no idea whatsoever what the painting was all about until those lines were added.

And so, for your eyes only, I would like to present one of Lewis’ most recent pieces of artwork which will be exhibited next week at the Erin Oaks Autism Conference in Mississauga. This delightful piece is entitled “Undersea Stroll.”

On A Wing And A Prayer

I’m scant hours away from landing in Moncton, New Brunswick to attend the FrancoFête en Acadie Conference and looking out my window, it’s clear that winter is at our doorstep. The sky is a watercolour wash blue-gray, showcasing the starkness of naked trees standing against it.

Most people hate this sort of scene but I happen to like the calmness it brings to an otherwise busy summer day. I like the crispness of Autumn. I like the pastiche of yellows and reds, browns and autumn greens as leaves fall from the trees and lay about on grey pavement and reddish-green hiking trails. And I’m looking forward to seeing Autumn reveal herself in Moncton.

Now don’t get me wrong. It’s not the cold weather that attracts me to this time of year. Au contraire, my friends. If anything, I much prefer warmer climes. But there’s something to be said about Autumn colours … colours that just aren’t the same at any other time of year.

I think back to one particular scene in the original Shrek movie where Donkey says, “Blue flower, red thorns! Blue flower, red thorns! Blue flower, red thorns! Oh, this would be so much easier if I wasn’t colour-blind!” Far too many people choose to be colour-blind in this world. They overlook the importance of colour … colour in the literal sense, colour as in the colour of life or any other sort of colour.

And this brings me to my point. In order to see the beauty that exists in this world, it’s important to take time to look for the nuances, hues and tints of colour. It’s only when you don’t take the time to see such beauty that you rob yourself of the richness of life and all it holds for you.

There’s a saying that says, “In order to have friendship you must look past the color to the soul, because within the soul lies a rainbow of many colors.”

How sad it is for those who are in so much of a rush that they miss the rainbow within others. So today, take a moment to look out your window to see the beauty of what might otherwise be called a dreary day and see it through new eyes with an open heart. What you see may, indeed, astound you.

Nostalgia at the Rainbow’s End

Since returning from Florida 2 weeks ago, I’ve been at a loss as to what my next blog entry should be. Tonight I came across a video on YouTube that took me back 26 years to a simpler time when I was single and young and naive and romantic … terribly, terribly romantic.

Sergio Mendez had a knack for repeatedly penetrating the North American market when other artists from outside America considered themselves lucky if they could have one run at the ever elusive U.S. music market. Part of the charm with Mendez was the music … well structured, rhythmic, interesting. It was just different enough to catch your ear but not so different that it was foreign to the listener’s ears.

Sometimes you can listen to a song from your younger days and it sounds so dated after so much time has passed. With Mendez’s music only the arrangements sound dated with a Fender Rhodes piano as the lead instrument in such songs as “Rainbow’s End” and “Never Gonna Let You Go.”

The songs are as true now as they were back then. The lyrics speak of universal truths that strike at the heart of all who have ever dared to love and run the risk of losing it all with only a broken heart to show for one’s efforts.

In “Rainbow’s End” the singer asks:

Who’s playin’ cards from midnight ’til dawn?
Lives in a wasteland yesterday’s gone forever?
He’s made up his mind to leave it all behind.
So he says to himself as he folds up his hand,
“Who are my friends will understand where I’m going –
To find my own way; I won’t turn back again.

There was always hope in Mendez’s songs … the hope of a future that might change everything. No matter how the lyrics spoke of love gone wrong, they always held out the promise of love returned or love revisited or new love.

As this song says, “I have a dream that I hold in my heart and I won’t let go. Welcome tomorrow – I’m on my way so goodbye yesterday.”

So hold on to your dreams, allow yourself to be a wild romantic and believe in tomorrows that set everything right between you and your love. It may never happen but what have you got to lose by believing that it could happen?

We’re Not In Kansas Anymore

Earlier today, the results of a telephone survey dealing with Autism were made known to the media and, subsequently, the general public. 

A telephone survey is nowhere as reliable as a research study however in the hands of the media, this telephone survey has become the Holy Grail many anti-vaccine and epidemic theorists have long sought.  The problem with this is that the results of the telephone survey will only serve to undo most of the current ongoing research on Autism Spectrum Disorders.

A control procedure is an essential part of research because it allows researchers to eliminate and isolate biological variation, researcher bias and environmental variation that can skew data.  Yes, the control procedure provides an important baseline from which to begin the study.

A researcher must only measure one variable at a time while using the control procedure as the reliable baseline data so that the results can be accurately recorded, measured and interpreted.

There are two types of control procedure, positive and negative, both providing researchers with ways of increasing the statistical validity of their data.

If the control procedure fails, there is something wrong with the design. For this reason, scientists prefer to use positive control procedures in order to reduce the chances of false negatives.

When a researcher establishes a strong control procedure, it becomes the most important part of any scientific design. Failure to provide sufficient evidence of strong control procedure has been known to invalidate a studies.  For this reason, it’s vital to ensure that studies are as accurate as possible during the data collection cycle otherwise everything that follows afterwards becomes tainted and invalid.

Telephone surveys, however, are not meant to provide accurate information.  They are meant to elicit the answer the telemarketers expect.  This is why the questions asked are skewed and double barreled.

Telemarketers and telephone surveyers don’t have a principal investigator as chief researcher; telemarketers and telephone surveyers have an employer in charge of delivering the results the contractor wants delivered.

The margin for error is huge and even with errors, the survey can stand as is replete with errors.

Measurement Error is a bias that occurs when surveys do not survey what they intended to measure. It results from flaws in question wording, question order, question response options and more.  (mention the two questions here)

Coverage Error is associated with the inability to contact portions of the population. Telephone surveys usually exclude people who do not have landline phones in their household, the homeless, people who are not home at the time of attempted contact regardless of the reason and more. What’s more, it also excludes cell phone users since the Random Digit Dialing samples have been set up to exclude cell phone exchanges in keeping with government policies.

Non-response Error results from not being able to interview people who would be eligible to take the survey. Non-response bias is the difference in responses of those people who complete the survey versus those who refuse to complete the survey regardless of their reasons for refusing to do so.
 
The findings from the telephone survey are based on the results of a national telephone survey of more than 78,000 parents of children ages 3 to 17. The survey dealt with many health issues and included two questions on autism.

Parents were asked whether they’d ever been told by a doctor or other health care provider that their child had autism, Asperger’s syndrome, pervasive developmental disorder or other autism spectrum disorder.

If the parent said yes, they were asked if their child currently has autism or an autism spectrum disorder. “Yes” to both questions was counted as a child with an autism disorder.

So what exactly is a health care provider?  Most people assume this means a doctor or a specialist.  They are mistaken.  A health care provider is, by definition, an individual who provides health services to health care consumers.

This means that if a physician, nurse, dentist, mental health worker, birth control counselor, STD manager or even an early childhood educator provides health services to an individual or family, that person is considered to be a health care professional.  That’s what the McGraw-Hill Concise Dictionary of Modern Medicine states and upon checking a little further, it’s the definition used by various Colleges of Physicians and Surgeons in North America.

The telephone survey was seriously flawed from the beginning.  The design was very bad. 

Now the Health Resources and Services Administration (HRSA) is the group who announced the findings of the survey to the media.  HRSA, in case one is unaware, is an Agency of the U.S. Department of Health and Human Services.  It is the principal Federal Agency charged with increasing access to health care for those who are medically underserved.

HRSA’s programmatic portfolio includes a range of programs or initiatives designed to increase access to care, improve quality, and safeguard the health and well-being of the Nation’s most vulnerable populations.

Isn’t just a little too coincidental that HRSA’s findings should be released to the media on the same day that US President Barack Obama returned to the front lines of the health reform debate after investing weeks on foreign and economic crises?

And isn’t it just a little strange that Obama should start focusing on health care while standing amidst a sea of white coat-wearing doctors from all 50 U.S. states?

What’s really going on here?

Thoughts On Going To Hell

Last month, we spent a few days kicking around Michigan, Indiana, Illinois and Wisconsin … twelve days to be exact. It was a ‘dry run’ sort of trip to help us gauge how well Lewis could travel just 8 weeks after undergoing major surgery.

We wanted to stay close to the border in case we had to come back to Canada in a rush. You know how moms are, always worrying about worst case scenarios and putting strategies in place to deal with scenarios that could happen but thankfully rarely do.

We drove far into Michigan, entering from Port Huron as we’ve done on previous occasions. We sailed past Flint, Michigan on our way to Ann Arbor, Michigan with one destination in mind … the little village we had set our sights on visiting the following day.

Needless to say, traveling with Lewis is always an experience. No matter where you go or what you do, he finds adventure and intrigue and excitement. What made the first tourist stop off so enchanting was the name of the town in the first place and how it got named in the second place.

Most people drive through small towns and villages with fewer than 100 residents but oftentimes, the most amazing things can be found in those little niches hidden away from the general public. This is how we found ourselves in Hell.

Yes, there’s a town with 72 residents right smack dab in the middle of Michigan named Hell and it’s been Hell since 1841 when George Reeves, the homesteader who settled there, named the town. OK, he didn’t exactly name the town. The State of Michigan sent government people to see him 3 years after he had settled in the area to insist that he give his town a name. He told them, “You can call it Hell for all I care. Everyone else does!” And so, what could easily have been Reevesville or Georgetown was registered as Hell.

We had looked Hell up thanks to Google Maps and Google Earth and truth be told, Thomas and I weren’t convinced it was everything Lewis thought it was going to be. But Lewis has great instincts and a wonderful sense of adventure and an even more outrageous sense of the offbeat, so Hell was our first destination on this trip.

What could easily have been a 10 minute pop-and-coffee stop became a nearly full day visit despite the fact that the town has a general store, an ice cream parlor and a restaurant with bar and shored up by a wedding chapel beside a miniature golf course. The clichés and puns and bad jokes abound in Hell — which is to be expected — and the dam on Hell Creek is as much a target as anything else that can be worked into a devilishly funny remark.

Upon our return home, and after having visited a number of other fantastic locations, work began on the series of “Awesome American Adventures” videos to be posted on YouTube at the Codeboy Adventures Channel.

This week’s blog entry has the first video in the series and is entitled, “To Hell And Back: Handbasket Optional.” Sit back and let Lewis drag you through Hell and see if it isn’t worth checking out in person.

Reality and Dashed Hopes

I had written an upbeat blog entry earlier this afternoon about a young musician I found on YouTube two days ago. I found him engaging and refreshing, talented and creative, topical and irreverent in a way that was positive and humourous.

Or so I thought.

One of my passions in life is educating people on Autism Spectrum Disorders and related illnesses. Too often, society at large has internalized incorrect information and based on that composite, discriminate against individuals with an Autism Spectrum Disorder, related illnesses or invisible disabilities.

As I was researching linkage for my blog entry, I came across one of the most offensive, ignorant and dangerous YouTube videos I have ever found online. It portrayed Asperger Syndrome in such an insensitive and incorrect way that would easily incite others to cruelly ridicule those who are diagnosed with AS.

Now I’m not talking about a video that only has a few hundred hits. The video in question has had 2,479,146 views to date and right smack dab in the middle of the video, playing the part of the passenger (and enjoying his role in the misportrayal of AS) was this young musician.

Imagine my surprise and disappointment. Until I happened upon that video, I thought this young artist was a great teen with a wonderful sense of repartee and a witty outlook on life that was just this side of Weird Al Yankovic.

It got me wondering about how others who are uneducated on the subject of Autism Spectrum Disorders perceive and present AS to their friends and circle of influence and so, I googled Asperger Syndrome as it was misspelled in the video.

Maybe it’s because I tend to see what’s good in people rather than anticipate what’s bad in others that I find myself surprised by what I find from time to time. In this case, I was horrified to see that there are more than just a few people who have such a twisted view of AS that it no longer resembles the diagnosis.

No wonder the media oftentimes misrepresents individuals with Autism in their news reports. No wonder the media oftentimes wonders aloud if the latest violent campus gunman has AS or if the suicide bomber in another country has AS. It doesn’t matter that it’s not true. What matters is that it’s a hot button that can be dropped into nearly any outrageous news story and no one says a thing about how wrong it is to bring AS into the story at all.

When’s the last time a news reporter began a report with, “A car driven by an average person who wasn’t paying attention to what he was doing crashed into a gas station pump as a customer who was equally clueless was fuelling his car, sparking a fire and sending a giant cloud of black smoke into the air above the city on Monday afternoon?”

No that’s not an attention-getter. But drop the word Asperger Syndrome into the mix and all of a sudden, it becomes the sort of story that everyone is tuning in to watch because ‘everyone’ knows how dangerous and/or stupid people with AS allegedly happen to be.

“A car driven by a man with AS crashed into a gas station pump as a customer with AS was fuelling his car, sparking a fire and sending a giant cloud of black smoke into the air above the city on Monday afternoon.”

Now we have all sorts of Letters to the Editor stating that people with AS shouldn’t have cars and shouldn’t drive cars and shouldn’t be allowed to refuel their cars because they’re just so darned dangerous, don’t you know it?

So where does this misperception concerning Asperger Syndrome come from? It comes from videos like the offensive, ignorant and dangerous YouTube video I found while researching linkage for my original blog on an otherwise talented young musician.

Hopefully my personal email to him will make him rethink his actions and spur him on to educating himself on the subject of Autism Spectrum Disorders.

Spam, Blam, No Thank You Ma’am

This past weekend, I received spam email from a local entrepreneur who has recently completed a small business program. This entrepreneur didn’t take the time to know who she was emailing and copied a number of businesses to the same email.

Yes, this was definitely spam by its very definition because it was both Unsolicited and it was bulk email — in other words, there were multiple recipients of the same email.

An electronic message is deemed to be “spam” when:

(1) the recipient’s personal identity and context are irrelevant because the message is equally applicable to many other potential recipients;

AND

(2) the recipient has not verifiably granted deliberate, explicit, and still-revocable permission for it to be sent.

As we all know spam is about consent, not about content. The content of the email is irrelevant; all that matters, by law, is that the message was sent unsolicited and in bulk. This is what makes it spam.

Industry Canada states that any unsolicited email sent to the email address of an individual who did not consent to receive that email could be in violation of the federal Personal Information Protection and Electronic Documents Act (PIPEDA) and, possibly, other substantially similar provincial legislation.

The Office of the Privacy Commissioner has determined that a business email address is personal information and, therefore, protected by PIPEDA. Such information can be collected and used without consent, but only for its intended purposes.

There was a recent situation involving Suzanne Morin and her business email address. Her email address was collected from an online professional association membership directory. She filed a complaint with the Privacy Commissioner because of unsolicited email solicitations she received from a third party.

The Office of the Privacy Commissioner found that one’s business email address is, for the purposes of PIPEDA, personal information. The Office found that the collection and subsequent use of Ms. Morin’s email address for commercial email solicitation was done without her consent and in contravention of the Act.

Other countries have anti-spam regulations.

The United States has their CAN-SPAM Act of 2003 (Controlling the Assault of Non-Solicited Pornography and Marketing). Australia enacted their Spam Act 2003. The United Kingdom has their Privacy and Electronic Communications Regulations 2003. France enacted the Loi pour la confiance dans l’économie numérique 2004. And the European Union has their EC Directive 2003/58/EC.

In the spirit of Dave Carroll and his public commentary on Ms. Irlweg and United Airlines, I would like to state that the Ms. Chesebrough’s and financial and business solution start ups of this world should brush up on why spam is not welcome by business people either at their personal email address or their business address.

Lord knows that when the Electronic Commerce Protection Act Bill — also known as the ECPA — is passed into law in Canada, senders suspected of spamming will experience harsher penalties than the harsh penalties already in place with CAN-SPAM in the U.S.

In fact, once the ECPA bill becomes law, it won’t just be Internet Service Providers who can sue spammers. Yes, in Canada, individuals will be allowed to sue senders suspected of spamming and while the fine is currently set at $200 per item, class action suits could spell the end of businesses that do not take the time to take current and future legislation seriously.

Besides, who would want to do business with someone who so easily disregards the current laws of the land?

This Is What New Normal Looks Like

It’s not every child who can say that they know more about the pediatrics ward than he ever wants to know in one lifetime. Unfortunately, there are children in this world who know far more than they should about it. My son, Lewis, is one of those kids; he has spent more than his fair share in hospital from the time he was born up until the present and he will spend more than his fair share in hospital in years to come.

When babies are born, they are rated on the APGAR scale that addresses five different areas, rating each area either 0, 1 or 2 depending on how the newborn presents. The APGAR is administered at birth, 5 minutes and 15 minutes. Now, the best news is that the infant rates 10 across the board as this means the baby is healthy and well. Lewis rated a 2 at birth, a 2 at 5 minutes and a 4 at 15 minutes. Needless to say, this was a very bad start for a baby who was a month overdue in the first place and had to be induced in the second place and was finally delivered by Cesarean section in the third place.

Thus began the first of many hospital stays, most of them in isolation, on Pediatric Floors.

You would think that a child with so many health issues would be afraid to venture too far away from an Emergency Room but not Lewis. In fact, Lewis has demonstrated a zest for life that you would expect to find in someone who has never had a sick day in his life. It’s his approach to life that makes him the engaging child he is.

Recently, Lewis underwent major surgery in an effort to force his Myasthenia Gravis into remission. Seeing him in Critical Care afterwards was one of the hardest and yet, happiest, days of my life. Like any parent, I am devastated to see my child in pain and like any parent, I am overjoyed to see that my child is alive. And so, seeing him in Critical Care after his thymectomy was a bittersweet moment that both lifted my spirits and dashed them against the rocks.

As he healed from the surgery and was moved to Intensive Care and then Observation Care, I kept reminding myself that he has always been a fighter. His eyes would flutter open and in a morphine haze, he would say, “Mom, I love you.” I would smile back and say, “Thank you.”

It was a private joke he and I share that goes back to his early hospitalizations where I would whisper in his ear whenever I had a chance, “Lewis, I love you.” As a toddler, he would smile each time I whispered this in his ear and he would answer, “Thank you.” Now the tables were turned and the exchange was just as precious.

On the third day after the operation, out of the blue, he turned his head towards me and said matter-of-factedly, “Remember mom … this is my new normal. I’m still the same kid I was before the operation. This is just my new normal. Don’t ever forget that. I’m still normal.”

And he was right. Nothing had changed about his true nature. He was still Lewis and he would continue to be Lewis. He was just a modified physical version of the constant immutable child I love.

Music Is Where You Find It

There are people who believe that music only happens when musical instruments are played or voices sing.   There are people who believe that music can be heard in the breeze playing off the leaves of trees in the forest.  And then there are those who fall between the two and for whom the definition of music is as wide and varied as one can imagine.

So what exactly is music and how does one define music?

The basic parts of music are rhythm, melody, harmony, timbre, and texture and these fall under one of two elements:  time or pitch.    Together they form what we know to be music regardless of the culture in which one lives.

Under the time element, you have rhythm, meter, tempo, dynamics and accents.  Under the pitch element, you have timber, melody and harmony and together, they create texture. 

Music cannot happen without time.  In fact, it takes time to listen to music.  And in order for music to have time, there has to be an identifiable rhythm even if it is an irregular rhythm.  At some point that rhythm repeats itself becoming meter.  Within that repetition, tempo is established.  And where rhythm, meter and tempo can be found, the laws of nature establish dynamics and accents based on where sounds fall.

Timbre is what you find once you extract pitch, loudness and duration from a sound.  It is a complex wave containing more than one frequency that distinguishes it from any other sound.  In other words, a shakuhachi and a flute can play the same note but timbre is what allows the listener to differentiate between the two instruments.

Melody is when you string a number of notes together in such a way that its shape creates a wave of sounds that ascend and descend.  Whether it’s a “rising melody” or an “arch-shaped” phrase, it’s this assembly of notes that is known as melody. 

Where any note is happening at the same time as at least one other notem the relationship therein is called harmony.  Now harmony doesn’t always have to be pleasant to the ear.  In fact, some of the best harmony is discordant harmony that resolves itself to a pleasing harmony for the listener.

And then there’s texture.  There’s monophonic such as one person singing a song a capella and there’s homophonic such as a barbershop quartet singing the same song a capella.  Ther’s polyphonic, which is the most common, such as a band playing a song and there’s heterophonic which is rare in Western music although it is found in bluegrass, Cajun and Zydeco music.

Knowing all of this, it’s easy to see how people can sometimes hear music in a breeze blowing through the trees.  And it’s easy to see how people can sometimes believe that music can only happen with instruments and voices.

Sometimes, however, innovation gives the listener a completely different appreciation of what may or may not be music.  And so this week, my friends, I present you with music that is composed entirely of Windows™ sounds.  Enjoy and feel free to comment on what you hear!

They Call It Kismet

Back about a decade ago, I got it into my head that I should write a play about relationships that would appeal to blue collar workers as well as to white collar workers. I wanted to write something that wouldn’t be so high brow as to be annoying or so vulgar as to be insulting to the audience. I worked steadfastly on this project and in scant weeks, the play was completed.

“Love, Life and the Meaning of Einstein” took Albert Einstein’s theories apart and rebuilt them over two relationships. One was between a couple meeting for the first time on a flight from Florida to Ontario with connecting stops, one of which was New York City; the other between a couple who had a long established online relationship but who had never met in person.

Providing commentary on the events as they transpired was none other than Albert Einstein who explained how he saw life, how he arrived at his theories, what his thoughts on women were and more.

Oddly enough, Einstein’s theories become considerably easier to understand and follow once they are transposed onto human relations, most remarkably the Theory of Special Relativity.

Last month, my friend Monique asked me if Lewis and I would like to go to Kansas with her in August.  She was planning to visit her sister just outside Phillipsburg and she needed someone to split driving responsibilities with her. Kismet!

In the play, I had made reference to a town in Kansas known as Kismet. It was a small town with only a few hundred people but it was a remarkable enough town that one of the characters in the play made mention of it and then explained what was so remarkable about Kismet that he should remember it so vividly. Now I would like to take the opportunity to introduce Lewis to Kismet and Kismet to Lewis.

In the blink of an eye, I agreed to go to Kansas if for no other reason than I would be able to take Lewis to this unknown gem of a town. Then I got to thinking. What if there was such a place as Destiny, Nebraska or Fate, Illinois or maybe even Chance, South Dakota? So now, I am researching names of places that are between Kansas and Ontario in the hopes of happening upon other towns with equally interesting names.

Who knows? Maybe someone reading this blog will know of a place with a name so amazingly cool that we can’t resist adding it to our travels this August. What’s more, maybe Lewis will be so enchanted with what we find there that he’ll decide to create a video specifically on each town that catches his attention. In any case, you can call it kismet that Monique should ask me to share driving responsibilities with her later this month. I certainly do.