I Never Regret Mother’s Day

From time to time, I read posts on social media or hear people say in public they regret having had children. That someone would feel that way about their children — adopted, fostered, or biologically created — is shocking.  While I am among the first to say that parenting isn’t something to be taken on lightly or without complete dedication, I am also among the first to say that no one should ever regret having had children.

Back in 1995, I was weeks away from becoming a mom.  My feet were round (based on other people’s observations as I could no longer see my feet), it was gearing up to be the hottest summer on record where I lived (and the weather was making good on that promise already), my then-husband (being a long-haul trucker) was oftentimes hundreds of miles away from home, and I could no longer drive a car.  Why couldn’t I drive a car?  For me to be able to reach the gas and brake pedals, I had to be closer to the steering wheel than my pregnancy would actually allow.

When I went into labor early a few days later, it was a rush to the hospital where things didn’t look very good.  A few hours later, the staff at the hospital had managed to stop labor and I was sent back home.  As scary as that episode was, I didn’t regret being pregnant.  This was part of the journey.

When my son was born in July , the staff at the hospital told me there were problems.  He wasn’t going to make it through the first 24 hours.  I disagreed with that assessment. That night as I visited my son in NICU, I whispered to him, “Thank you for spending your first day with mommy.  I hope you’ll come back again tomorrow.”  Guess what happened?  The following morning, I held him in my arms, gazed into his eyes, and smiled.

A week later, my son was still in NICU and despite all sorts of tests, the staff at the hospital had no idea what was going on with my son.  Two weeks in, and still in NICU, they were none the wiser.  It was a harrowing time, especially for a new mom. but I had no regrets about being my son’s mother.

Over the years, my son’s health was unpredictable and difficult.  My then-husband decided early on to throw in the towel, and walk away from parenthood.  He oftentimes told me he regretted having our son.  Leaving our family created a hardship for me, but that’s how things go in life sometimes.  Despite all the troubles of trying to juggle hardly any money and the demands of ensuring a child with health issues has what he or she needs, I didn’t regret being a mom.  Every night, I would put my son to bed and whisper to him, “Thank you for spending another day with mommy.  I’ll see you tomorrow.”

As a toddler, my son was diagnosed with autism.  There were no services or supports available to help me help him:  Not even when the Children’s Advocate Office in Saskatchewan stepped in and tried to secure some kind of services or supports from the provincial government.  I still didn’t regret being a mom because my focus was on helping my son be the best version of himself possible.


School wasn’t easy for him either as two different school boards in which he was enrolled, struggled to understand how to encourage my son to work through social issues, deal with new experiences, and overcome challenges.  Despite the fact I kept telling them the world wasn’t a Special Needs World, most teachers, school staff, autism experts, and administrators from various levels within both school boards felt that catering to his comforts was the better way to deal with him.  I didn’t agree with them (just as I hadn’t agreed with the hospital staff when he was born) but sometimes you have to live with the fact that the many oftentimes drown out the voices of the few.  I still didn’t regret being my son’s mom.  It just meant I had to work harder with him to nudge him along his journey to become the best version of himself possible.

When he turned 12, he was diagnosed with Myasthenia Gravis which is a rare, incurable, life-threatening neuromuscular autoimmune disease that strikes 2 in 1 million children, and is 5 times more rare in children than in adults.  Over the years, he had suffered many “mystery” health issues that landed him in hospital, and it was one bad episode in particular that made me ask his pediatrician if he could test my son for Myasthenia Gravis.

“Myasthenia Gravis doesn’t happen in children,” he pronounced sternly with that look I had come to know all too well.  It was the look many closed-minded professionals reserved for parents they dismissed out of hand without considering the validity or the questions asked by those parents they dismissed out of hand.  “It only happens in old men over 60 and women over 40.”

“My brother was diagnosed with Myasthenia Gravis,” I replied respectfully.  “He wasn’t 60.  He was my son’s age.”

“No,” he insisted.  “This is definitely a tumor behind his eye.”

We discussed the matter for a few more minutes, and he decided to send my son to the Hospital for Sick Children to be tested for a tumor.  Because I insisted, he jotted down a note in the file for the doctors at the Hospital for Sick Children that indicated he felt I was being unreasonable, but to ‘manage’ me by doing a Tensilon test if nothing else showed up on the other tests.  Even with the pediatrician’s dismissive attitude, I didn’t regret being my son’s mother.

The Hospital for Sick Children, taking the pediatrician at his word, very nearly forgot the Tensilon test until I inquired about it.  They were so convinced I was a University of Google parent, they didn’t even have their camera set up to record the results of the Tensilon test.  It’s unfortunate these medical professionals were so convinced the pediatrician was right in his conclusions because that Tensilon test proved my son had Myasthenia Gravis.  Even with that news, I still didn’t regret being my son’s mother.

The next few months were some of the most trying for both of us, and after 14 months of battling Myasthenia Gravis, it was decided that a thymectomy was the only way to go as his health plummeted.   I knew how unpredictable Myasthenia Gravis could be (my late brother was diagnosed with Myasthenia Gravis back in the 1970s).  I knew how dangerous surgery could be.  I knew how dangerous the after-effects of surgery could be if he made it through the surgery itself.  These were dark times but I focused on the fact my son was alive and every night, I would say to him what I had said to him every night at bedtime since July 1995:  “Thank you for spending another day with me.  I’ll see you tomorrow.”

He entered high school and even though the school board seemed to overlook the fact that my son wanted to be in a regular class, by the second semester, he was auditing regular classes.  The following year, he began taking regular classes for credit, and by the time he was in Grade 11 he had a 79% average for all the classes he had taken.  He was a geek in that he loved computers, but he also excelled in History and in Religious Studies.

He left high school when his peers left high school, and he continued to make his way in life.  Even when Myasthenia Gravis made it so he could barely do anything (as sometimes happens), he had an interesting life that didn’t always take him where he was originally headed.  For his 20th birthday, I put together and shared this montage celebrating 20 years of him being him.  No regrets.

For his 21st birthday, I made sure I didn’t embarrass him with a mushy mom-style card.  He got this card instead along with a small collection of gifts of things he wanted or things he needed.  Just because he was an independent adult didn’t meant I wasn’t still his mom.  No regrets.

I have a nice collection of scrapbooks I’ve made over the years with pictures of my son:  Places we’ve visited together, difficult times we’ve been through together, and the successes he has had over the years.  So whether it’s this version of him I’m thinking about ….

… or this version of him I’m thinking about …

…. being my son’s mom is something I will never regret.

Happy Mother’s Day, Lewis.  I will always love you wherever life takes you because I have faith in the person you are, and I know you have it in you to be anything you decide to be.

 

 

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Traffic Stops and Autism

Last weekend in Burbank (California, USA), a traffic stop resulted in the typical cry of police brutality.  A 16-year-old teen who was a passenger in his mother’s car became combative when the vehicle was pulled over and the officer spoke with the mother about the teen not wearing his seatbelt.

It wasn’t long before the mother ran to the media claiming that the family was “crushed” because the 16-year-old had been tasered by police during the traffic stop.

It sounds relatively straightforward in reading some of the shorter reports, but once the details are considered, the situation is straightforward but not in the way you might think.  Here are the facts based on the audio recording from the device he police officer was wearing at the time.

The car was pulled over because the verbal, high-functioning autistic 16-year-old teen wasn’t wearing his seatbelt. His mother’s excuse to the police officer was that she was in a hurry to get to where she was going, so she didn’t tell him to put his seatbelt on.  However, it’s the law in California (as it is in other states in the US and provinces in Canada) to wear seatbelts when in a vehicle, and it’s been the law for a long time now.  If a minor doesn’t know the law, it’s up to the adult in the vehicle (in this case, the 16-year-old’s mother) to make sure that he’s buckled up.

During the traffic stop, the teen was arguing aggressively with his mother. Please keep in mind that the officer’s job is to serve and protect, and part of that job sometimes entails protecting a mother from a 16-year-old son.  Undoubtedly, the officer took into consideration that the teen may or may not have mental health issues thereby explaining his approach to the situation.

Next, the teen argued aggressively with the police officer, telling him that he wanted to fight the officer “hand-to-hand.”  The officer chose to disregard this threat and to deal directly with the mother in a non-confrontational manner.

As the police officer explained to the mother that it’s the law for everyone to wear a seatbelt while in the vehicle, the teen interrupted the officer several times using inflammatory dialogue (as shown by the audio recording of the traffic stop). Rather than escalate the situation, the officer simply warned the mother, and decided against issuing a citation.

That’s the officer deescalating the situation.

The officer asked the teen to buckle up.  The teen said he would but only if the officer walked away.  So the officer stepped back from the vehicle and the teen did, indeed, put on his seatbelt.

That’s the officer further deescalating the situation.

However, the teen then removed his seatbelt and told the police officer that he was going to fight the officer “right now.”  He kicked the car door open into the officer’s legs.  The officer continued to deescalate the situation by not going on the offensive.

The teen dared the officer to call for back up, and directed the police officer to pepper spray him.

Obviously the police officer didn’t want the situation to escalate, and at that point, he chose not to pepper spray the aggressive teen.

The teen followed up with punching the officer in the upper body and in the head.

Now some people in the autism community are saying that the verbal, high-functioning autistic teen probably didn’t understand what was going on.

Kahn 1
Except that we do know that the teen isn’t so severely affected by autism that he doesn’t understand it’s the law to wear a seatbelt in the car.  We also know that it’s not an unwritten law that says “don’t attack the police.”  It’s a real law.  The charge for attacking a police officer is usually “Assault on a police officer.”

In any case, the attack on the officer put the officer in the position where he had to protect himself (because an incapacitated police officer and a violent teen regardless of a diagnosis of autism or a lack therein is a dangerous mix).  It’s at this point that the officer pepper sprayed the teen.   The pepper spray had marginal effect on the teen who continued to punch the officer multiple times.

Rather than pull his gun on the teen, and rather than place himself in a position where the teen could gain control of the officer’s gun, the officer tasered the teen to subdue him.

Again, some people in the autism community insist that perhaps this was a case of self-defense and that the teen’s actions were warranted.

Kahn 2
While there may be the rare circumstance where self-defense against a police officer is a viable and acceptable defense against assaulting a police officer, that doesn’t seem to be the case here.  In fact, had the teen buckled up and stayed buckled up, his mother would have been allowed to continue to their destination with nothing more than a warning from the officer.  There was nothing that would support the claim that the teen was defending himself against an assault by the police officer.

Based on audio recorded facts, the teen appears to be in the wrong, and using his autism as an excuse only places others with autism in danger of being stereotyped as “dangerous” and “violent” because they, too, have a diagnosis of autism.  We’ve seen this happen more and more often, and more and more often the media now speculates on whether a mass shooter has autism.

Remember that the police officer was willing to let the mother drive off with a warning provided that all the occupants in the vehicle were wearing seatbelts.

Remember that the teen decided to blow the situation up into an assault against the police officer.

Remember that the mother then went to the media, crying about the way her son was tasered with no mention about how her son provoked the situation.

And lastly, remember that autism is not a “get out of jail free” card to be played at will.  Just because someone feels entitled to do as they please doesn’t mean they can do as they please, even if they have a diagnosis of autism.  Laws exist for a reason, and usually the reason is to keep society as a whole safe from harm.

Elyse Bruce

Welcome to the New Wild West

The Internet is the Wild West of this generation, where some of the population happen to be gunslingers of the digital age who have no compunction whatsoever with leveling their guns at whoever for whatever reason and pulling the trigger repeatedly with the intention of killing the intended target.   Instead of using real bullets, they use cybermobbing and cyberbullying to get the job done.  And then they post prolifically on their social media feeds, boasting loudly about their latest efforts. 

Until last week, I hadn’t heard the term awarist, much less autism awarist. I was introduced to the term in a shocking way and have since learned that the new wave of militant activist now prefers to refer to himself or herself as an awarist.

The term appears to have first been coined by Donna Carbone in November of 2010 in an article entitled “I’m An Awarist – Not A Racist” where she wrote:

“Whether it is an aggressive driver on the highway who thinks rage is his right, the neighbor who allows their dog to defecate on your lawn and shows no inclination to clean it up, or a foreigner who does not agree with our liberties, we need to accept that being victimized – by gun, knife, bomb or bully – is the way of the world. Call me a racist. Go ahead. But I guarantee you that the awarist in me makes my safety – and yours – a priority and label I can live with.”

A little over a year later, and the word was appearing here and there in the context of being a corporate awarist. The word made its way into the mainstream and it began to show up in Letters to the Editor in newspapers across Canada and the United States. Not sure if that’s accurate? Here’s an excerpt from a letter published in the Mapleridge News back in February 2012 where M. Felgner wrote:

“Our environment is threatened; it is under attack and has been for a very long time. I admit that I have transformed from a conspiracy theorists to a ‘corporate awarist.’ I have come to realize that there are no corporate or government conspiracies, they just do what they can to make as much profit as possible and literally squash anything or anyone that affects or threatened the bottom line.”

It was one of those new-fangled words that was picked up by those who thought of themselves as trendy, and they began using the word in brief online descriptions. Donna Fisher described herself on 99 Continental Congress 2.0 as an “Über awarist, technologian, historian, librarian, and artist. Member of the human race since 1954.”

Not to be outdone, Jeremy Turkin included the word when he described himself as a “Screenwriter. Musician. Amateur Dog groomer. Toothpick enthusiast. Prosopographer. Future philanthropist. Overly self-awarist. Word-maker-upper.”

It’s difficult to tell what autism awarists are hoping to achieve. Like their militant brothers who chose to be known as autism activists and autism warriors – sometimes adding “against woo” to the warrior term – this next generation of twenty-somethings has an agenda that doesn’t allow for any discussion. If you don’t agree with them about autism or anything else, or support their cause wholeheartedly, you are labeled an enemy of autistics.

So what do these autism awarists want?

They claim they want to spread autism awareness but it’s more than that. They want to spread their version of autism awareness, portraying autism as they wish it to be, not as it necessarily is. Most of them feel they are superior to all others, sometimes even superior to others who are also diagnosed with an autism spectrum disorder. Those ones state loudly, usually with a snort of derision, that they have evolved beyond those humans who are beneath them.

Such autism awarists are, in most every way, cookie cutter versions of their predecessors and even some of their predecessors are laying claim to the term autism awarist as they try to make the leap from old school to new school image.

It appears that the autism awarist‘s agenda is to silence and destroy anyone who threatens their concept of reality, no matter how skewed that reality may, in fact, be. And this is why some autism awarists are dangerous.

If you are a parent of a child or youth diagnosed with an autism spectrum disorder and you take that responsibility seriously, autism awarists will target you for cybermobbing and cyberbullying if they feel you are disrespecting the “specialness” of autism that, in their opinion, entitles an autistic to do as they please, when they please.

If you are part of the autism community and not necessarily a parent, autism awarists will target you for cybermobbing and cyberbullying if they feel you are disrespecting the “specialness” of autism that, in their opinion, entitles an autistic to do as they please, when they please.

And if you dare write factually about what really goes on in the autism community, autism awarists will target you for cybermobbing and cyberbullying if they feel you are disrespecting the “specialness” of autism that, in their opinion, entitles an autistic to do as they please, when they please.

How do I know? Because earlier this week, when I was introduced to the term awarist, it was due to the fact that autism awarists targeted my personal Twitter account, urging their followers to falsely report me to Twitter. As with Facebook, there’s a magic number that is read by Twitter technology which leads to an account being suspended.

So let me say this to all the autism awarists out there who are joining arms with those autism advocates, activists and warriors [against woo] of previous years: it’s not your place to tell parents how to guide, mentor and raise their children and youth with or without an autism spectrum disorder.

If you don’t like being told by parents to back off and take your condescending attitudes with you, then leave them and their children and youth alone. Until doctors and lawyers and police officers tell them they’re in the wrong, parents have a right to raise their children and youth as they see fit.

It’s not your place to tell adults — even professionals like Tony Attwood — that they don’t know anything about autism spectrum disorders because those adults disagree with your views as well as your real life and online behaviour. And it’s certainly not your place to rally your other like-minded autism awarist followers to attempt to run people off the Internet because they disagree with your views as well as your real life and online behaviour.

If you don’t like the facts as they pertain to autism and the autism community, that’s your prerogative. But that doesn’t grant you the right to try and destroy other people’s lives just because you are unwilling to accept certain facts that may not be quite as trendy or fashionable as you would like them to be.

Asperger Syndrome is Asperger Syndrome. It’s part of the autism spectrum but that doesn’t mean that just because you may be diagnosed or self-diagnosed with Asperger Syndrome, that you have an understanding of the spectrum. It means you have a limited understanding and a limited awareness of how your brand of AS presents itself in you and you alone.

Being bullies isn’t going to get you any brownie points in anyone’s books but most especially not in the books of those who matter in life. In fact, your unconscionable behavior could get you into a little more trouble with the authorities than you thought should come your way.

And parents of minors with online social media accounts — be it Twitter, Facebook, MySpace, Pinterest, or any other social media platform – keep your eyes out for autism awarists who live to jump on good parents and undermine their efforts.

From The Novel

For those of you who are interested in experiencing a little bit of “Glass On A Stick” I can share with you that Amazon.com allows visitors to preview the first three chapters free of charge.   Just click on the cover and a new window will open up, allowing you to read to your heart’s content … as long as it’s only the first three chapters. 

Writing “Glass On A Stick” was an equal mix of work and play.  There’s no doubt that writing a book with 205,000 words in it is work, and a lot of it at that.  But there’s also no doubt that breathing life into the characters in a book is a lot of fun.   Because of this, I thought I’d share an excerpt from the book since I, like so many of you, enjoy sneak peeks.

One of the characters in the book, Doug Wilder, reminisces about his childhood and what he remembers will certainly bring back memories to those of you who grew up back in the 70s.  And for those of you who didn’t grow up in the 70s, you’ll still find this excerpt well worth the read.  So enjoy, and share the link to this blog entry with your friends on whatever social media networks you may find yourselves.

Excerpt from Chapter 19:

     Spending that many hours with strangers afforded Doug a lot of free time, and he filled it as best he could by acting out all sorts of adventures that were rattling about in his head at any given time.  He remembered this one time when he was about five years old, when the babysitter was busy hanging the wash outside and he decided he was going to crash his Matchbox cars into the wall in the hallway.  He liked watching his cars careen down the hallway, and he was never too sure when they would spin out of control and bang into the walls on either side.  He imagined himself to be the Richard Petty of Matchbox car racing even if he was only racing against himself.  He remembered that the last time he’d done that, the babysitter had chewed him out for damaging the long wooden slats that ran along the walls.  She had yelled at him for what seemed like hours about something on the walls that belonged to someone named Wayne, and it wasn’t until he was an adult that he realized that she’d been upset over the damage he’d done to the wainscoting. 

     In any case, he remembered that he didn’t want to get her upset with him again, and so he’d come up with the idea that if he lined the walls with rolls of toilet paper, the cars would crash into the toilet paper instead of against the walls.  Once he was done playing with the cars, he could return the toilet paper to where it came from and no one would know that they had been used as crash barriers that afternoon.  He thought the babysitter probably kept the toilet paper in the closet by the bathroom with the towels like his dad did at their house, and so he ran to the end of the hallway and opened the closet door right beside the babysitter’s bathroom.  He found toilet paper all right, but not enough to make crash barriers on both sides of the hallway.  And then, right behind all those rolls of toilet paper, he found a box he’d never seen before. 

     He tore it open and found packages … long packages that had something soft inside them.  Tearing one package open, he found a rectangular shaped pad that was soft like toilet paper and smelled pretty, like the baby powder his mom used to put on his baby sister when she changed her diapers.   He turned the pad over and found a strip of paper on the other side.  He peeled back the corner and touched it with his index finger.  It was sticky!  His mind had quickly determined that if it was sticky, it would stick to the wall, and if it stuck to the wall, this was even better than toilet paper, which might move if a car hit it.  He divided the contents of the box into two separate piles and counted them, excited to learn that there were as many in one pile as in the other.  Doug ripped the packages open excitedly, and laid them out along both sides of the hallway to see how far they would reach.  Since he rarely crashed his cars at the beginning of the race, he decided to line the packages up from the bathroom back down to his Matchbox car starting line.  He could reach two-thirds of the way down the hallway!   He decided it was best to set up the barrier one pad at a time and with that, he carefully and methodically pulled the strip off the back of one pad, stuck it securely to the wall where it met the floor, stripped  off the back of the next pad, stuck it after the first one, and so on.   So he wouldn’t be accused of having made a mess, he put the strips of paper and the packaging the pads were wrapped in back in the box and put the box on the counter in the kitchen so he could replace the pads and have them for the next time he’d bring his Matchbox cars over to the babysitter’s house.  With that, he hurried back to the starting line and began to race his cars again, except this time, he felt compelled to crash them into these new-fangled crash barriers as hard as possible to see if they would stand up to the speed and force one could expect from authentic die-cast high-speed racing cars. 

     He had run maybe three or four races by the time the babysitter came back inside. He hadn’t heard her admonishing the dog outside for getting in her way as she juggled the laundry basket and tried to open the sliding glass door, nor had he heard the sliding glass door open.   What he did hear was an ear-piercing scream and the laundry basket falling to the ground, along with the odd sound folded laundry made as it spilled out across the kitchen floor.  She slapped Doug hard in the back of the head and his head bounced off one of the walls.  Tears welled up in his eyes as she began tearing the barriers off the wall, more because she was destroying his racing track design than because his head smarted.  And Mrs. Sanchez, a mix of horror, shock, anger and upset, hurried down the hallway, ripping pads off the wall, crying, “¡Ay, Madre de Dios!” and “¡Estupido!” and other things Doug didn’t understand.  At the end of the hallway, and having ripped nearly all the barriers off the wall, she turned back to Doug and shouted, “You are a very bad boy!  I’m going to tell your papa what you did to my house!” 

     The unfairness of it was only equaled by his fear for what his dad was going to do to him when he found out about the crash barrier he’d built to protect Mrs. Sanchez’s walls.  He couldn’t remember what his dad had done to him after the babysitter had told him why she wouldn’t babysit him and his sister anymore, but now that he had diagnosed himself with Asperger Syndrome, he understood that she had discriminated against him because of his condition even though Asperger Syndrome wasn’t a diagnosis commonly made back when he was growing up.  It didn’t matter though.  He knew that Mrs. Sanchez, like all the other babysitters before her and after her, hated him for his superior intellect, and this is why they were more abusive towards him than they ever were towards his sister.

Moms of Kids with Autism Have Complaints

On  March 19, 2012 there was a news article in the official journal of the American Academy of Pediatrics about the impact childhood autism has on parental employment and earnings.  The results were even harsher than many expected and as harsh as parents of children diagnosed with an autism spectrum disorder have been saying for years.

To put what the study said in very understandable terms, let’s say that mothers of children with no health limitations earn $30,000 per year. 

The study revealed that mothers of children with a diagnosis other than an autism spectrum disorder earned 56% less than the mothers of children with no health limitations.  That translates into $13,200 per year.  That’s quite a drop in potential income generating power!

But mothers of children with an autism spectrum disorder earned 35% less than the mothers earning $13,200 per year. That translates into a yearly income of $8,580 per year … well below the poverty level identified by Statistics Canada for a single person, never mind a single parent raising a child with health conditions.

The study showed that across all three groups (fathers of children with no health limitations, fathers of children with a health limitation other than an autism spectrum disorder and fathers of children with an autism spectrum disorder), fathers were not impacted.  One can speculate that the reason for this is that the father is generally the higher wage earner and as such, the financially prudent decision in a two-parent family is for the mother to shoulder the issues pertaining to raising a child diagnosed with an autism spectrum disorder.

In almost 10% of two-parent families where a child is diagnosed with an autism spectrum disorder, only one parent generates the family income.

The conclusions of the study were that families of children with an autism spectrum disorder face significant economic burdens that other families with and without other health limitations do not face.  When substantially less income is coupled with expenses that must be incurred on behalf of a child diagnosed with an autism spectrum disorder, the economic impact on the family is that much harsher than most realize.

Imagine what the study would have revealed if they had included what happens in single parent families of a child with an autism spectrum disorder. 

If the worst income for a mother in a two-parent family was $8,580 the question that begs to be answered is this:  How does a one-parent family of a child with an autism spectrum disorder make ends meet?

Registered retirement savings plans are cashed in.  Investments and savings are decimated.  Anything of value is sold.  And at the end of the day, that’s still not enough to stay afloat.

What happens if a single parent of a child with an autism spectrum disorder finds themselves in the position where the only option left is to apply for welfare?  Anything and everything that can be converted into cash must be converted.  That means insurance policies have to be sold.  If something is being held in trust for anyone in the family unit, that interest has to be sold off.  Tools of the trade for those who are self-employed are exempt but by the time someone has nothing left to sell in order to pay the bills, the tools of the trade that are left are almost always obsolete since it’s rare that someone will purchase older tools of the trade unless they happen to be collectors of memorabilia along the lines of buyers on shows such as American Pickers and Canadian Pickers.   Yes, most parents go this route, believing that sometime in the near future, they’ll be able to pick up more work to help pay the bills and slow the massive financial hemorrhaging.

In Ontario, the asset limit threshold for a single parent raising one child is $1,610.  Sure there are exemptions but the problem with the exemptions is that by the time a single parent family of a child with an autism spectrum disorder asks the government for help, what could have been exempt was already sold off.  The problem with that is that in the province of Ontario, anything that was sold off in the three years preceding the application for assistance can be used to disqualify the applicant.  If the government deems that the price that was paid for an asset wasn’t as much as they feel could have been paid, that’s going to impact negatively on the application.

In Ontario, as in many other provinces, there are only two things that determine an applicant’s eligibility:  the applicant’s financial situation and the applicant’s willingness to take part in activities to find a job.

What isn’t taken into account are the hours invested by the applicant of a child with an autism spectrum disorder into dealing with medical appointments, therapy sessions, counseling for the child, school meetings, school emergencies (and trust me, any parent of a child with an autism spectrum disorder will tell you that there are lots and lots and lots of school emergencies), IEP meetings, placement meetings, and more.  All of that impacts on what the government perceives as an applicant’s willingness to take part in activities to find a job.

Can you imagine what happens when other serious health issues are blended into the equation?  What was previously an extremely difficult situation now becomes an almost impossible situation.

Some of you may be wondering why I’ve chosen to share this with you today.  The reason is simple.  My son is 16 years old and I’ve been a single parent for nearly all of those 16 years.  I’ve busted my sides to give my son and everyone involved in my son’s care what they need and want in order to address my son’s autism.  I’ve done likewise with regards to addressing his other serious health issues:  Myasthenia Gravis and a bilateral congenital kidney defect.  I have done likewise with regards to addressing his lesser health issues (of which there are many).  I’ve managed to hold my own for 16 years, with some years requiring more belt tightening than others.  To that end, I’ve experienced a personal satisfaction that I’ve survived against all sorts of odds that would have taken many of my friends and acquaintances down to the ground.

There’s so much I could say about how society fails to embrace families of children with serious health issues.  Negative societal attitudes with regards to disabilities is almost as crippling as the financial devastation that results from dealing with disabilities.  The people diagnosed with disabilities aren’t the problem; the way society treats people diagnosed with disabilities and their caregivers is the problem. 

The next time you have a chance to see the parent of a child diagnosed with disabilities, especially an autism spectrum disorder or an autism spectrum disorder alongside one or more other conditions, ask yourself why you haven’t stepped up to the plate as much as you could have.  Instead of making excuses for not contacting parents of such children, pick up the phone or send an email.  Ask if they’re available to work on contract basis so both you and those parents can benefit from the wealth of knowledge and resourcefulness that is part of who they are and part of their lives.

And if you know they are worthy of recognition for what they do, then start recognizing them.  It doesn’t have to be a trophy or a nomination.  Something as simple as accessing their expertise and paying them a decent contract wage for that expertise could surprise the daylights out of you.

Or, if it’s easier for you, you could just find lighter fare on Facebook or WordPress or Twitter with a simple click of your computer mouse.

Promises, Promises

Promises are a declaration assuring that one will or will not do something.  A promise is an undertaking or assurance given by one person to another agreeing or guaranteeing to do or to give something, or not to do or not to give something.  That’s a dictionary definition for what a promise is.  And promises, by virtue of what they are, create the foundation for expectation.  In other words, when a promise is made, it’s expected that the promise will be carried out. 

Here are three true stories, and all three of them have Lewis at the heart of each story.

STORY #1

Back in the Fall of 2008, I ran into a well-known local musician at a local music store.  We had worked together on a couple of gigs in the past.  Straight up … we knew each other; it’s as simple as that.

Now this well-known local musician made a big deal about being concerned about Lewis’ health as Lewis had been diagnosed scant months before with Myasthenia Gravis.  He made an even bigger deal about the fact that he was going to write a song for Lewis to raise his spirits.  He was so enthusiastic about writing a song for Lewis that he spoke loudly and boisterously about the song and everyone in the store was able to overhear the conversation without much effort.

As readers of my blog know, Lewis underwent a thymectomy at the Hospital for Sick Children on June 9, 2009.  If ever there was a time when he needed to have his spirits raised, it was in the weeks immediately following his surgery when he was in so much pain from the surgery.

And so on June 30, 2009 I messaged this musician who continued to get mileage from his comments about writing a song for Lewis via Facebook.  I updated him on Lewis’ surgery and ended the message with, “I know you’ve been working on a song for Lewis.  Any idea when he might be able to hear it?

The next day, he wrote back with:  “I’m sorry to hear about his flu. I’ve been working on a song for Lewis, but I’ve hit a road block. Could you give me a bit more insight into Lewis’s illness along with things that make him happy …   Favourite colour ….. Activities …. Nothing major. Just a few ideas to help me out. Thanks. BD

To help him out, since he obviously hadn’t been able to start Lewis’ song or email me for additional information about Lewis in the 9 months that passed between his promise and the Facebook message, I sent back a detailed message and ended it with, “Thanks for writing a song for Lewis. I know you’re a busy guy and it touched my heart (and Lewis’) when you said you were writing a song for him. I have no doubt it’s going to be a very moving and heartfelt piece.”

A few months after that, he messaged me saying that he had received an email from one of my friends that “deeply saddened” him.  He claimed he didn’t know this friend even though he had met him on a number of occasions when this friend and I were together.  He knew this friend he now denied knowing.  And indeed, he was upset by what my friend had written. 

He was so upset, he spent an hour allegedly crying his eyes out — allegedly for real, not just as a figure of speech — at the local music store about how some stranger had taken him to task on two specific promises he had made to Lewis, one of those promises being the song he had announced — on more than one occasion at this local music store — that he was writing to raise Lewis’ spirits.

Months later, I wound up shutting the book on Beau Dixon.  He never wrote that song for Lewis.  If he did, he certainly never played it for Lewis or recorded a piano and vocal demo of the song and sent it to Lewis.  The promise was tossed aside but not before squeezing some personal gain for himself.   It would seem that this is how Beau Dixon rolls.

STORY #2

Another local musician and I met on Facebook sometime in late spring 2010.  The discussions on our respective Walls on hot button subjects such as politics and religion and lesser hot button subject such as music and disabilities were interesting, with many people joining in with their comments and points of view.  He also got to know Lewis via my blog articles on this blog site, my comments on Facebook and via Lewis’ own website. 

He had heard Story #1 and was saddened to see that a promise made by a well-known local musician to a young teen fighting so many health issues had been tossed off.  In August 2010, he messaged me via Facebook and told me that Lewis inspired him to write “You Can’t Stand In The Middle” … a song he wrote especially for Lewis.  He didn’t announce to the world that he had written this song.  He wasn’t planning to profit from it by adding it to his upcoming CD.  In other words, this wasn’t about getting mileage for himself from having written a song to raise Lewis’ spirits.  This was about writing a song to raise Lewis’ spirits.  Lewis received a copy of the song in September 2010 just a few weeks before he was scheduled for kidney surgery at the Hospital for Sick Children.  That’s how Gary David Currie aka the Freeman rolls.

STORY #3

An online music colleague I met when the mi7.com music forums were still online lives in Japan.  He is also on Facebook and despite living with the challenges and obstacles of having serious health issues himself, he faces each day with a positive outlook on life and a zest for living. 

He needs a wheelchair to get around due to his disabilities and lives in the Fukushima prefecture where 22 out of the 23 monitors around the crippled Fukushima Daiichi plant stopped sending data 3 hours after the massive March 11 earthquake and tsunami.  Nuclear fuel rods were exposed and there was overheating in at least 3 of the nuclear reactors.  He was to have hip surgery just before the earthquake and tsunami hit Japan and, understandably, his surgery was put off after the earthquake and tsunami.

When asked how people could help him after the disaster hit Japan, his only request was for people to donate to the Red Cross Japan Fund.  He asked nothing for himself. I let my online and real life friends know that this was the best way to help the people of Japan and many of us donated to the Red Cross to help Japan.

In June, Lewis let people know that he was turning 16 in July.  When asked what he would like for a present, he answered that he would be happy if people donated to charities of their choosing but if they couldn’t choose, he would like donations to be made to the Red Cross Japan Fund.  Again, friends donated to the Red Cross to help Japan and Lewis was very happy to see this happen.

Now my online music colleague has never heard STORY #1 or STORY #2.  He doesn’t know about the well-known local musician who broke his promise to write a song for Lewis to raise his spirits; he doesn’t know about the local musician who wrote a song for Lewis to raise his spirits.

Last week was Lewis’ 16th birthday, as most of the blog readers know.  Hiroto shared 3 original piano compositions with Lewis in honour of reaching this milestone birthday.  They are, in a word, beautiful.  As with Gary, Hiroto thought of Lewis and shared unconditionally with him.  And that’s how Hiroto rolls.

Hiroto is known as the artist Hirotonix and released an instrumental CD, “Galactic Water” in February 2011.  While he benefits from the work the Red Cross is doing in Japan, it would help him even more if music lovers purchased his CD.  For those wondering how much £5.99 is in dollars, that’s $9.75 USD.

So there you have it, dear readers … three different stories about promises:  One about a broken promise, one about an inspired promise, and one about a heartfelt and sincere promise.

The next time you are about to make a promise to someone, ask yourself if you can keep that promise.  If you can’t, there’s no shame in not making the promise.  The only shame is making a promise you don’t keep.

So now ask yourself this: When you make a promise, are you Story #2 or Story #3 …. or are you Story #1 and ok with that?

IndiePool Grants Wishes

I was in Toronto all day today, running important errands. Now that’s not a big announcement. Lots of people go in to Toronto to run important errands, to shop or to just kick around for the day at the Ontario Science Centre or Toronto Island or the Royal Ontario Museum. But today, one of my errands was something pretty important.

I stopped by IndiePool with the “Dreamtime” master and the CD cover artwork in hand. For those of you who aren’t in the know about why the “Dreamtime Project” is so important, let me share with you some details.

Back in early 2010, Lewis asked me to help him raise awareness of the Make-A-Wish Foundation. He asked me to help him help the Make-A-Wish Foundation grant wishes to other children living with life-threatening illnesses. He knows it takes a team of hard-working people to pull together what’s needed to grant a wish for a child or teen living with a life-threatening illness. And he knows that every bit of help donated to the Make-A-Wish Foundation — whether it’s time, money, services, product — goes to a number of very good causes: granting wishes to special kids like him.

If you don’t know who Lewis is, let me share a little about him as well. He’s an award winning teen, having won four prestigious awards over the past 2 years alone: the 2009 Peterborough Victoria Northumberland Clarington Catholic District School Board Medal of Perseverance; the 2009 Trent University Community Leader Award for Youth Aged 25 and Younger; the 2010 Male Youth Volunteer of the Year Award; and the 2011 Mayor’s Youth Award. As he likes to tell people, he’s a professional kid with cool ideas. And he’s a young man with lots of heart and compassion. Yes, Lewis has a lot going for him. Every one who meets him soon finds out that they can’t help but get involved in his projects. But there’s more to Lewis than meets the eye!

He is afflicted with Myasthenia Gravis, an incurable life-threatening neuromuscular autoimmune disease that strikes 2 in one million children. He also has Autism Spectrum Disorder and a raft of other diagnosed disabilities and disorders. And he’s a Make-A-Wish Kid himself.

Together, we created the “Dreamtime Project” made up of four components: a Special Edition CD; a signed Special Edition print of the artwork for the CD cover painted by Lewis; a Flash Mob Dance; and a dance performance to the music from the Special Edition CD.

In all, it was a very ambitious vision. It was also Lewis’ wish that we make this happen and so we set about to make this happen. You see, for Lewis, making others happy makes him happy and he wants other kids like him with special wishes to have the opportunity to have those special wishes granted.

Lewis has a unique way of painting that I’ve never really seen any other artist master before. He abhors traditional paint brushes, preferring to use his fingers and thumbs, the palm or side of his hand, sponges and indelible fine line black markers to create. Not only did he paint new works but he looked through earlier canvasses to see if the CD cover was among the many tableaux and art sheets that can be found throughout the house. In the end, he settled on “A Sunday Afternoon Stroll Under The Sea” also known as “Undersea Stroll.” 

"A Sunday Afternoon Stroll Under The Sea" by Lewis Schofield

As I stepped into the offices at IndiePool, I knew that IndiePool’s Trevor Norris wouldn’t be around this afternoon. He had called at lunchtime to let me know that he had a horrible cold. Over the past few months, Lewis’ health has deteriorated and it’s been difficult for his medical team to determine what his symptoms mean. That Trevor would be so thoughtful as to think about the dangers of possibly passing his cold on to me and then indirectly passing his cold on to Lewis, only shows how much people really do care about others. And so, I met with Lindsay Casey instead and in no time, everything was in place and good to go.

Coming back home, I thought about the support Lewis and I have gotten from IndiePool for various projects over the years and smiled. I felt that wonderful feeling you get when you know you and everyone else involved in a project are bringing their best efforts to the table.

And I smiled again as I thought about how happy Lewis is because I agreed to grant him this different special wish … the wish to help the Make-A-Wish Foundation grant wishes to other children.

The Special Edition “Dreamtime” CD with Lewis’ artwork on the cover goes on sale on Wednesday, August 4, 2011 as do 100 signed Special Edition prints of the CD cover artwork. A portion of the proceeds from the sale of the CDs and Prints are being donated by Lewis and me to the Make-A-Wish Foundation.

What he’s hoping for most is that people from around the world will join him in making this wish … this dream he has for other children … come true. What I’m hoping for is that other children’s wishes will be granted because of this project and I’m hoping that Lewis’ wish to raise awareness and money to benefit the Make-A-Wish Foundation comes true.

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