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• 

  Chairman of the bored

  CHAIRMAN OF THE BORED

  (Published in The Scugog Standard, July 19, 2012)

   So here we are, knee-deep in Week 4 of the Summer Holiday, and Stephie is bored. Occasionally to tears.

  Normally, I would circumvent ennui by loading up her vacation with camps for kids with special needs and day trips to interesting destinations and shopping excursions to air conditioned malls and any number of riveting diversions.

  The problem is, this summer ‘holiday’ has no discernible ending. And Stephie is no longer a kid.

  We won’t be buying back-to-school supplies in August. No bright pink backpack. No Crayola pencil crayons and markers. No binder filled with lined paper. For the first time in 16 years, Stephanie won’t be boarding that little yellow bus on Sept. 4. Instead, she will stay at home with Rob and me. And we’re not all that much fun.

  We are, however, lucky. Because we are both self employed and have the luxury of arranging our work schedules around our daughter, we at least have the opportunity to break the monotony of Stephie’s days. We take her to the beach to dog-watch. We take her to the neighbourhood bistro for lunch. We take her shopping at our local Sobeys or Vincenzo Supermarket, the little Italian grocery store around the corner. We take her for long, hot strolls along the Danforth. And when we have to leave the house, we take her to our auditions and meetings.

  We talk to her. We eat meals with her. We hug her. But mostly we work, because that’s what ‘normally developing’ grown-ups do when they finish school.

  So where does that leave Stephie, a recent high school ‘graduate,’ who has no diploma, no opportunity for post-secondary education, no job, and no ability to navigate life on her own? Flapping at the kitchen table while she listens to her iPod. Flapping in front of her computer while she watches kid-animated YouTube videos set to her favourite pop songs. Flapping in front of TV shows on Animal Planet or one of her hundreds of creature DVDs. Flapping, as she wanders aimlessly about the house talking to herself – to her imaginary cartoon friends, who feel much ‘safer’ than real friends.

  Even for Stephie, this gets tedious after a while. And so she cries. Because she is bored and she can’t find innovative ways to entertain herself. Because she can’t read. Because she can’t walk down the street without getting lost. Because she can’t pick up the phone and call somebody. Because she can’t jump in the car and go somewhere – anywhere. Because she is depressed and she doesn’t know why. Because she can’t escape herself.

  What makes the invariability of this summer excruciating is that it will extend into the rest of Stephanie’s life.

  New studies in the US indicate that 90 per cent of people with autism – and one in 88 has the disorder – are completely isolated within three years of finishing school. Much harder to employ than their cohorts with physical disabilities, young adults with Autism Spectrum Disorder (ASD) have no work, no friends, no hope. It’s a bleak outlook, and one we’re not prepared to accept for our daughter.

  We have completed the Application for Developmental Services and Supports now required by the Ministry of Community and Social Services for all Ontario adults with a developmental disability who wish to apply for developmental services and supports. If additional funding becomes available through the Passport Program – “initiated to enhance opportunities for young people with a developmental disability to transition to adult services and supports, and to provide funding for adults with a developmental disability, who are no longer in school, and are seeking transition planning and community participation supports” – we are at least on the list. And based on how Stephie scored on the Support Intensity Scale, we will be provided with the names of agencies that are in a position to offer her services so we can begin to make our applications. Unfortunately, it can take years to get to the top of these wait lists and a hallowed placement can cost thousands of dollars a month.

  In the meantime, we are exploring volunteer opportunities. We are driving her north of the city so she can continue to take horseback riding lessons. We are developing www.stephimals.com so she has a place to share her artwork with the world. We are making a documentary film to draw attention to the plight of our daughter and thousands of others like her in this province. And we are doing everything we can to keep her from crying.

• 

  Don’t mess with Xmas

  DON’T MESS WITH XMAS

  (Published in The Scugog Standard, December 2010)

  ‘Twas the night before Christmas, when all through the house, not a creature was stirring … NO SPOONS!

  That was my little attempt at humour one Christmas Eve when I was a teenager cultivating the blackness in my soul and my brother was still a wide-eyed little boy with visions of sugar plums dancing in his head. Matt was grievously offended – I had robbed him of something sacred – and he burst into tears.

  It wasn’t a completely unexpected reaction (I had an inkling I was playing with fire and someone was going to get burned) but I secretly congratulated myself at being clever enough to produce such a witty rendition. I could have set the Christmas tree on fire (if it weren’t for dad’s homemade flame-retardant concoction that kept the needles from combusting well into January) and it wouldn’t have wounded Matt so deeply. Reading that beloved poem on Dec. 24, after we’d hung our stockings by the chimney with care, was such a holiday ritual in our house that the text was more precious than the Dead Sea Scrolls. No apology could atone for my sin. Mom was ticked, too – probably because I made my brother cry on Christmas Eve, the most holy of nights. If I recall correctly, I don’t think the two of them let me start again and read the damn thing properly. I’d spoiled the moment, I’d ruined Christmas, and Mom tucked the book away for another year, by which time 365 days on the road to perdition would surely have beaten any pubescent rebelliousness out of me.

  I still read that book with my family every Christmas Eve and my own teenagers have never once sullied the wonder with their own humorous editorial remarks. The book was mom’s when she was little; a two-foot cut out paper volume, with red felt on the cover so you could feel the softness of Santa’s suit. The flocking is worn to almost nothing and the cover has become detached from the pages over the decades but it’s still worth a small fortune.

  I should know. In 2010, I discovered eBay. Or rather, a ‘friend’ set me up with an eBay account. (What kind of friend dangles smack in front of a recovering heroin addict?!) I wanted to look for a pair of cherubic boy/girl ceramic planters I’d shot for The Standard and didn’t buy (a momentary bout of frugality I’ve been trying to make up for ever since) at St. Andrew’s Presbyterian Church yard sale in Port Perry a few years ago. That search quickly led to an investment of hundreds of dollars in first edition children’s Golden books about animals, many won in hotly contested auctions. I planned to give them to Stephie for Christmas (don’t tell her, she has no idea what’s inside all those cardboard boxes in my closet) but as the collection mushroomed, it became to extensive for a single Christmas. Now it looks like I’ll have to dole them out over birthdays and special occasions for the rest of her life. (Did I mention that I also started her on a Lomonosov collection, which necessitated purchasing a glass curio cabinet on Kijiji – another new universe of spending to explore! – to display all the porcelain figurines that flew to us from overseas?)

  I’ve been on the eBay wagon for a while, so I’ve developed a new consumer addiction – combing DVD bargain bins. I wanted to pick up a movie for my son’s girlfriend to go with her eBay gift and I asked Mattie what kind of flicks Beth is into. “She likes old movies,” he said. “Like Casablanca and Breakfast at Tiffany’s?” “Not that old!” he cried as if I was criminally insane and had just come at him with a pair of scissors. “Movies from the 90s. That’s our era.”

  With a sigh, I picked up a copy of that 1999 classic ‘Analyze This’ with Robert De Niro and Billy Crystal. At least the next time I sit down opposite my own shrink I won’t have to ask him why I’m feeling archaic.

  Stephie, however, is as youthfully exuberant as always. The other day she turned to me and said, “Mom, whoever came up with Christmas is a genius!”

  Merry Christmas to you and yours, and may the New Year bring you one step closer to the Fountain of Youthful Exuberance.

• 

  The autistic genius behind STEPHimals

  THE AUTISTIC GENIUS BEHIND STEPHIMALS

  (Versions of this article have appeared in Neighbourhood Living Magazine, The Scugog Standard, Autism Matters and The Lanark Animal Welfare Society newsletter)

   

  Like most children, artist Stephanie Coveart liked to colour when she was a youngster. Unlike most children, she only coloured eyes. And only the eyes of animals. She would go through an entire colouring book and when all the eyes were done, the book went in the garbage.

  As Stephanie got older, she began to colour entire creatures, but only creatures – never humans and never any background detail. They were just animals, floating in space, completely disconnected from their environment. Eventually, Steph moved beyond colouring books and started drawing on her own; circles and sticks that she called cats and dogs and horses and lions. She drew on everything, every scrap of paper, every napkin, every grocery store receipt. And gradually, as her fine motor skills improved, her distinctive style emerged.

  At 21, Stephanie has never drawn a house or a tree, a boat or an airplane, an ocean or a star, but she has drawn thousands of animals – every one clearly identifiable as a STEPHimal™, but each one different.

  Stephanie’s artistic expression is rooted in her ‘dis’abilities. She is developmentally delayed and epileptic, but it is her autism that has truly shaped her as an artist. STEPHimal™ body styles may be similar – there are just two distinct shapes – but the extremities are never exactly the same. The cant of the head, the shape of the ears, the number of legs all differ among drawings, as do the colours, as infinitely variable as the markers with which she works.

  For people with autism, there are no generalizations. There is no such thing as a ship or a mall. There is the Titanic and the Toronto Eaton Centre. There are no forests – only trees. Although difficulty with patterning, sequencing and copying make it impossible for Stephanie to replicate one of her creations, it is unlikely she would even if she could. Each STEPHimal™ is a unique individual. Each has its own name; its own colour palette. There is only one Princess Kitty. One Blew Cat. One Carpaccio. One Sodahead. One Baby Coagulant. Clones don’t exist in Steph’s imagination.

  Neither, apparently, does context. Like her early colouring book pictures, each STEPHimal™ is adrift in space, anchored only to the page upon which it is drawn. There is no sun; there are no flowers, no raindrops, no grass, no trees. We think her drawings are a reflection of the way Stephie processes information in the world around her. She doesn’t see streetscapes or landscapes, she sees individual houses and blossoms. And generally these don’t interest her. What does interest her is the cat in the window or under a bush; the dog tied to the lamp post or walking beside a stroller. It is animals that connect her to this world and keep her present. The rest is just noise. Unless it is relevant to her frame of reference – unless it is has something to do with an animal – she tunes it out.

  This is typical of people with autism, who often fixate on one subject of interest. It might be train schedules or bus routes or sports statistics or maps or dates. For Steph it is creatures, particularly cats and dogs, which comprise the bulk of her STEPHimals™ creations.

  There are other consistent design elements in the STEPHimals™ that can likely be attributed to her diagnosis of autism spectrum disorder. The eyes, for example. They truly are the window to the soul and they convey so much information that people with autism find eye-to-eye contact distracting and overwhelming. That’s probably why STEPHimals™ rarely gaze directly out at Stephanie. They tend to look up or away, which allows her to concentrate on the creature as a whole.

  Each animal also has a collar, complete with name tag, which could be a reflection of Stephanie’s obsession with animal names. She always asks – and never forgets – the name of the pets she meets. By natural extension, every STEPHimal must be clearly and uniquely identifiable.

  While these idiosyncrasies are engaging, it is the sheer joyfulness of each picture – a reflection of the artist’s purity – that captivates everyone who has seen Stephanie’s work. People with autism engage with the world visually, and neuroscientists speculate they ‘think in pictures.’ Steph’s artwork is her way of speaking to the world and expressing her uninhibited love of life.

  

  She received the art award when she graduated from the Developmental Disabilities program in June 2012 (all Ontario high school students, even those with profound disabilities, must leave the educational system when they turn 21) and, now that she no longer attends classes, Stephanie is a working artist. With the launch of stephimals.com on December 1, 2012, she is selling her work – original drawings to start, with plans to expand into clothing, household items and home decor – online and in neighbourhood shops and galleries.

  The response has been overwhelming. People are embracing both the art and the artist – their vibrancy, their gladness, their guilelessness – hallmarks of autism as we know it. Accolades abound on the STEPHimonials page.

  “I love the colours and Steph’s interpretation of the cat or dog is fascinating to me. When I look at her pictures I can feel her innocence and her happiness.”

  “Beautiful imagery and colours, exudes joy and happiness … a great gift for all of us!”

  “Adults cannot draw like children even when they try because they are so influenced by how things ‘should’ be. Steph’s art is amazing because it has that innocence and you’re seeing the world through her eyes. No one has told her that a cat can’t have polka dots.”

  “You have put together your passion for animals and your love of drawing and you have created something beautiful in the world, and by doing that you are making it a happier, brighter and more joyful place to live.”

  What began as a hobby became an occupation after Stephanie gave 20 framed STEPHimals™ to her teachers and support staff when she graduated from Monarch Park Collegiate Institute. The recipients were genuinely moved and encouraged Stephanie to make her work available to a wider audience. Her first two pieces sold that fall – prior to the stephimals.com launch – at a silent auction benefiting the Toronto Feral Cat (Trap-Neuter-Release) Coalition. Even more impressive for a young artist just starting out, Stephanie branded her first successful marketing campaign to critical acclaim from members of the animation community. Kulture Kitty was the official ambassador of the cultureONE VIP Lounge at the first annual Toronto Animation Arts Festival International at the TIFF Bell Lightbox in June of 2012. The STEPHimal™ – which has since travelled as far afield as England, Australia, France and Dubai – appeared on posters and notepads, and caught the attention of venerable Canadian animator John Kricfalusi, creator of The Ren and Stimpy Show. Even before he heard the artist’s story, Kricfalusi told cultureONE president Steve Beatty that the creatures should have a television show of their own.

  She has since held her first solo show at Mangia & Bevi in Toronto, where she sold 11 pieces. Her work was so well received by staff and patrons – it was the first time that restaurant owner Eleanora Caldato had ever heard customers talking about the art on the walls – that she’s been invited back for the Christmas season. “The STEPHimals made everyone so happy,” says Eleanora. “We were all sad to see them go.” Steph is also represented by Dimensions Custom Framing and Gallery on Queen Street East, where her work is on permanent display, and she has been invited to show at galleries across Ontario.

  Although Stephanie has no understanding of the significance of her TAAFI debut, her shows or the endorsement of STEPHimals™ on the worldwide web, she is proud of the work she does. “I think my pictures are cute,” she says. “They make me feel good about myself because everyone feels happy when they look at them. I think being an artist is someone I’m meant to be.”

  She’s also a natural philanthropist. “I want to help animals that need my support. It is important for them to have good food, good care and good loving families. I’m hoping that my STEPHimals™ will help that cause.” (She also regularly donates her framed artwork to organizations that work with and support people who have special needs, including Autism Ontario and Holland Bloorview Kids Rehabilitation Hospital.)

  As for her ‘disability,’ “I’m glad I’m autistic,” says Stephanie, who is the subject of a documentary film currently in production that explores the challenges faced by people with intellectual disabilities as they transition from the sheltered school setting to the adult world. “I really like being different. And being an artist is amazing. It’s everything I ever dreamed I could be.”

   

  stephimals.com
  twitter: @stephimals

  facebook/stephimals

   

• 

  We got games

  WE GOT GAMES

  (Published in The Scugog Standard, July 16, 2012)
  

  As the 2012 Summer Games were winding down in London, England, this weekend, we were staging our own DIY Olympics in Perth, Ontario. Like the rest of the world, my sons and their friends had caught Olympic fever. Something of a hybrid between the brute strength of the brawny Highland Games and the finesse of the field sports, this first Olympiad was dubbed, by Stephanie, as the ‘Hooligan Games.’

  The boys improvised with the objects at hand, and their events included the rotten log roll, broomstick javelin, rusty barbecue lid discus and large rock shotput. But my favourite, by far, was the axe/hatchet toss into the log pile. While the girls spread themselves out gracefully on the dock to worship the sun, the boys grunted, sweated and swilled their way through two afternoons of serious competition for gold, silver and bronze honours. Of course, they had to contend with challenges no Olympian has before: drunkenness, poison ivy and the constant need to urinate, to name just three.

  I have never been a girly girl, and although I spent my fair share of time on the dock working on my tan, eventually a mix of curiosity and competitiveness lured me over to the muddy field where the games were taking place. Because I am somewhere between a 49-year-old mother and an adolescent boy, I was invited to participate in the one sport in which I thought I had a chance at medalling: the coveted axe/hatchet toss – the final competition of each day. And on the Saturday afternoon, I came close.

  After two rounds of competition, I was tied with six foot four Hillboy Flexie, who had the build of a farm boy and has probably tossed an axe or two in his day. He had already snagged most of the top hardware, so it was quite an accomplishment for a momboy to be challenging him in a toss-off. After high fives all around, I was pumped, but the pressure got to me. I choked on my last throw. While I wedged the hatchet, Ev buried it. I had to settle for silver, but like so many of our Canadian athletes, I was happy just to be there and do my best.

  Another feature of the Hooligan Games (a second Scottish influence) was the shotgunning of beer between events. This was an entirely new discipline for me, although the boys, apparently, were quite familiar with the technique. It involves poking a hole near the bottom of a beer can, putting the gash to your mouth, tipping the can upright while popping the tab and then draining the contents as quickly as possible. It turns out I have a natural facility for this game.

  In the first round, I won by a full second, surprising even myself. Apparently, that was the quickest the boys had ever seen anyone drain a can. They were so giddy with excitement I was encouraged to do it again. And again. I won each time by a goodly margin, to rousing cheers. It also turns out that chugging beer, especially when you are not accustomed to drinking (but even when you are), has a deleterious effect on your performance as an athlete.

  Pope, being smarter than the rest of us as well as the official photographer, didn’t even enter the games. Brendan forgot he was competing and wandered away in search of something in the middle of an event and was summarily disqualified. And I – not even officially entered as a competitor – decided to quit while I was ahead and retire to the dock for a little more liquid gold.

  Of course, none of the boys would ever be able to claim two of my greatest medals: Matthew, born 25 years ago Sunday, and Stephanie, born 21 years ago Monday. And if there was an Olympic medal awarded for the shedding of the most tears in a single day, I would have won it hands down on Monday, when I had to leave my happy place for the second time in two weeks. For I have discovered that my greatest joy is also my greatest sorrow. I am never happier than when we are all together, but I am never more sad than when we leave for our separate worlds. Each time we part company, it causes me physical pain – a wrenching, rending, tearing deep in my belly; that safe, secret place that was their first universe when I was their champion.

• 

  The complex beauty of ASD Shirley

  THE COMPLEX BEAUTY OF ASD SHIRLEY

  (Published in The Scugog Standard, April 8, 2010)

  When my daughter was born almost 19 years ago, autism was a continent that wasn’t even widely recognized, much less explored.

  It was in 1943 that Dr. Leo Kanner first described autism as a unique condition. He believed the cause was cold, unloving mothers. Fortunately for the moms of autistic children everywhere, our understanding of the brain has come a long way in the last 50 years. We now know that Autism Spectrum Disorder (ASD) is a complex neurobiological condition that affects the normal development of the brain and causes communication problems, impaired social interactions, a noticeably restricted repertoire of interests and activities and a tendency to repeat specific patterns of behaviour. Children with autism are also more likely to suffer from other conditions, including developmental delay, epilepsy, Tourette’s and ADD.

  Although there were countless times when I wanted to wear a T-shirt printed with the disclaimer “I’m not a bad mother … my daughter is autistic,” I think most people are beginning to realize that rather than love our children less, mothers with autistic kids love them – if possible – even more, or at least more fiercely.

  I’ll never forget the day when a head pediatrician at the Children’s Hospital of Eastern Ontario sat me down in his office after a battery of tests and told me that my daughter was mentally retarded. It was just another nail in the coffin of my little girl’s “ordinary” life, but it was still a shock. I’m sure he was fired shortly afterwards for his political incorrectness.

  In addition to being globally developmentally delayed (the new mentally retarded), Stephie developed a devastating seizure disorder at 18 months and was diagnosed with autism at six years of age, one year before she toilet trained. She screamed 23½ hours a day until she learned to crawl, at which point she started smiling – even when she was having a seizure every 10 seconds. The smiling has never stopped.

  She is the happiest person on the planet (unless there is a change of plans) and she spreads her joy like jam on toast.

  As a toddler, Stephie focused exclusively on animals (she still does – thank you/curse you Walt Disney for your ever-expanding catalogue of animated animal films) and lived in “the tiny pink world that mommy bought.” She liked to run away, did not want to be touched, had no fear of anything but gravity, watched TV with her face an inch from the screen, made little or no eye contact, could not make sense of the mechanics of conversation, failed to pick up on social cues, banged her head for hours at night to put herself to sleep and flapped in excitement like a crippled bird who might by some miracle become suddenly airborne.

  Stephie still bangs, flaps and averts her eyes, but she sticks to me like crazy glue and craves my hugs and kisses. She cannot consistently spell her own first name but she talks like a scholar and knows her Disney movies so well that she has even worked herself into the script and altered the dialogue accordingly. She can’t find her way to her grandparent’s house around the corner, but she knows the name and breed of every dog we’ve ever met on the street. She can’t ride a bike or catch a ball but she’s been involved with the Durham Therapeutic Riding Association (DTRA) for 14 years and there is nothing more beautiful than that girl on the back of a horse, tall and proud and smiling her dazzling smile. She calls her brain “Shirley” and when she’s having a particularly dim day she just laughs it off and explains that Shirley has gone to Cuba for a vacation (often with her shrimp children in tow, whoever they are).

  What we would give to be Shirley just for a day! To see the world through Stephie’s kind eyes. To know what she knows. To love so completely. To live so innocently. To have the capacity to experience pure joy on a daily basis.

  April [was] National Autism Awareness Month …a time for people with an autistic child to celebrate; a time for people who have never been exposed to the inexplicable gifts of autism to try to understand, and above all to accept. Brains like Shirley are found in as many as six in every 1,000 children [1 in 88 in 2013] and as neuroscientists begin to understand more about the autistic mind, they are going to discover complexities of learning that they never thought possible. Autistic children have so much to teach us and I, for one, can’t wait to learn.

  Stephie and I will take this journey together and I can’t imagine a better travelling companion.

• 

  The ‘woman’ inside the vampire

  THE ‘WOMAN’ INSIDE THE VAMPIRE

  (The Scugog Standard, October 2010)

  Another Halloween has come and gone and Stephie – at 19 – made her usual neighbourhood rounds with Rob at her side. I could be biased, but I think she was the greatest little vampire that has ever un-lived.

  Stephie is small for her age and completely unjaded. She lives for holidays, stays awake listening for Santa, can’t wait for the Easter Bunny to hide his eggs, and hopes, fervently, that the tooth fairy will have the occasion to visit again (although I think we’ve managed to persuaded her not to wiggle her adult teeth loose to force the issue). Only one person commented about her age when she appeared at their door on Sunday – ironically another youth with special needs.

  “How old are you?” he asked, accusingly, reluctant to part with the mini chocolate bar in his hand.

  “I’m 19,” said Stephie without a hint of self-consciousness.

  “You’re older than me … and I stopped going out for Halloween three years ago,” he said.

  Rob wasn’t sure if the young man was offended or jealous.

  Age is a relative thing. Many candy-hander-outers tried to ply Rob with sweets on Sunday night and he’s 49. He just looks like a strange little kid. The other day, when we were visiting mom at the nursing home, a resident asked Stephie what her brother’s name was, indicating Rob. Stephie, righteously indignant on my behalf once again, said, “He’s not my brother … he’s my dad!”

  Stephie might be 19 years old chronologically, but at heart she’s six. Some might argue that it’s time to end the charade, but why? She’s kind, happy and remarkably self-assured. Isn’t that all we want for our kids?

  Stephie gets more excited about Halloween now than she did as a young child, because the dark, the noise and the disguises terrified her and made no sense to her autistic brain. I’d dress her up in the cutest costume, ready to parade her before our neighbours, and we wouldn’t make it to a single house. Stephie would see a mask or hear a spooky door chime and she’d be in tears, begging me to take her back inside to watch a Winnie the Pooh video. She didn’t start trick or treating proper until she was seven or eight, so by my accounting she’s still got a few years to go before she can be accused of being greedy.

  Stephie was so excited in the days leading up to Halloween this year that she could barely sleep. Sunday afternoon was reserved for our pumpkins. We had four to disembowel and carve. Stephie was the ‘artistic director.’ She sat at the table deciding what CDs we would listen to (we’re currently working our way through the Beatles’ catalogue) and sketching out her characters, while Rob and I gutted. Autistic or not, she’s a clever girl. She doesn’t like to get her hands dirty, yet somehow manages to make it feel like a privilege when she persuades you to get icky on her behalf.

  She came up with a chubby Vampire Bunny named Bucky (or Rob Ford, we couldn’t decide which), a frightened lion, a decidedly Semitic-looking wolf, and an evil-looking cat draped over a crescent moon. It took us four hours and three-plus Beatles’ albums to slice them all, with Stephie bouncing between us the whole time complimenting our carving skills and her incredible ingenuity. We had just started getting her costume on when the first little goblins arrived at the door.

  I felt very sad when she and Rob finally disappeared past our jack-o’-lanterns and down the windy street – like I was missing out on a milestone by staying at home for the first time ever to shell out.

  After she was questioned about her age, Stephie turned and said thoughtfully to Rob, “You know, I’m going to be 20 next year. Maybe it’s time I stopped doing this.” Then she moved on, with a flourish of her cape, to the next brightly lit house.

  When I heard this, a wave of anguish washed over me. “Don’t worry,” Rob said, “When Halloween comes around next year she’ll be just as excited as she was tonight.”

  Please let him be right.

   

• 

  Going, but not gone

  GOING, BUT NOT GONE

  (Published in The Scugog Standard, July 2011)

  If you have driven past 7 Greenway Blvd. in the past few weeks, you will have noticed a couple of sure signs that things are about to change for the Covearts: the ‘For Sale’ sign, which was hammered into the lawn on May 18 and the ‘Sold’ sign, which we added a few days ago. After more than three years of sharing a half-life, Rob, Stephanie and I have decided to establish a more permanent family arrangement. On July 29, we girls will be moving from Port Perry to Toronto to live full-time with Rob in a house that we have purchased with our good friends at the Royal Bank here in town.

  It’s going to be a big – no, huge – adjustment for all of us. For Rob, a 50-year-old divorcee, who will be leaving the peace, tranquility and orderliness of single life. For Stephie, who, at 20, will be leaving behind her associated classmates of 12 years to enjoy her final high school lap in the Toronto District School Board’s ‘Developmentally Delayed’ program. (“How can I move to Toronto? I’m a Canadian!”) And for me, who will be leaving my wonderful parents (dad in his house on Perryview Dr. and mom in Community Nursing Home Port Perry), my two boys (Matthew in Port and Patrick dividing his time between Guelph and his father’s place in Oshawa) and my amazing community newspaper.

  On the surface, it sounds crazy. But when you dig deeper, the emotional science is solid. We want to be a family. Rob has come to realize that he loves his ‘girls’ much more than he loves his solitude. Stephie is excited by the prospect of having a ‘dad’ on site to adore her 24/7. And I crave the companionship of a partner. One who will share all the joys and sorrows of my life. One who will walk not in front of or behind me, but beside me, holding my hand, always. One who will not only mark my passage through this world but also help me to find my way when I stumble.

  It took us years to navigate the real estate market in the city with its offer dates and bidding wars, but we finally found the perfect little semi-detached house in what is now regarded as ‘The Artists’ Ghetto’ at Woodbine and Danforth (coincidentally just four streets east of the home where my mother was born and raised – and had a tonsillectomy on the kitchen table – before marrying my dad and hightailing it for the suburbs) for about the same price as we could buy a lakefront property up here in North Durham.

  Dad doesn’t understand it at all. He always hated the city and couldn’t wait to get out. And when my parents took a drive past our piece of paradise the other day, they both felt claustrophobic: the trees were too big; the houses too small, too close. But that’s what I love.

  I’ve spent my adult life surrounded by land. I want to be fenced in for a little while. I want to be able to walk to the corner market for my fruits and veggies. I want to take transit – do my part for the environment – and leave the car in the driveway. I want a small yard with no grass to mow and dandelions to curse. I want to get rid of all the junk I’ve been carting around with me for the past four moves just because I had the room. I want a smaller house with less square footage to clean and fewer horizontal surfaces to clutter.

  Will I miss Scugog? Terribly. Will I come back to visit? Often. Will it seem like I never left at all? Quite possibly. This is my home. I raised my kids here. I found my legs as a writer here. It was here that I discovered a community full of fascinating people who opened their hearts to me and let me share their triumphant stories with their friends and neighbours. And it was here that I found a readership who connected with my work, who grew with me as I grew into a columnist, and who took me into their homes each week and let me share with them my life and my perspective.

  The great thing about being a writer is that you can ply your craft from anywhere. All you need is a computer and a phone. And I have both. I also have a boss who isn’t quite ready to cut me loose. My sometimes humorous, sometimes poignant stories about the human condition, the flawed animal, he says, will be no less relevant when they are written 50 miles to the south west. So, come July 29, I will do what I have always done. I will Just Write! I may be going … but I won’t be gone.

• 

  Move over Mom, it’s Junior JustWriter

  MOVE OVER MOM, IT’S JUNIOR JUSTWRITER

  (Part 2 of 3 parts)

  (published in The Scugog Standard, April 22, 2010)

  Judging from the response to my daughter Stephanie’s column last week, I could soon be out of a job – or at the very least work-sharing with an 18-year-old autistic writer. Stephie was thrilled to have the opportunity to contribute to her community newspaper – and even more thrilled to know that people were truly appreciative of her contribution. A special moment, indeed, for a person with multiple disabilities who was never expected to walk or talk, let alone scribe an article that would appear in print for thousands of people to read.

  Like most of the township, we attended the Scugog Spring Garden Show this [year] at the Community Centre and it’s probably a good thing we arrived after Frankie Flowers made his appearance or he might not have been speaking to a capacity crowd. Stephanie was greeted as a celebrity, something that made her blush with pride while studiously avoiding eye contact. I was astonished at the number of people who came up to her to shake her hand and congratulate her on a job well done. She was ostensibly at the show to man The Scugog Standard booth and help to sell tickets for a quilt that will be raffled off in support of Nestleton Camp – which she attended last summer with much media fanfare – but she spent so much time talking to her admiring public that she didn’t push much product. If she had a signature – or could even reliably spell her first name – I’m sure she would have been happily signing autographs by the end of the day.

  When Rik first laid eyes on Stephie’s column (which was three times as long before I whittled it down to fit in the space allotted, cutting out such delightful non-sequiturs as “I like drawing with chalk,” which came out of nowhere, and humble assertions like “How could there be a child more perfect than me?”) he accused me of writing it myself. Especially the part where she sings my praises in a voice I have never before heard her use. But it was all Stephie. Every beautiful word. And it moved people. Perhaps because we have been conditioned to expect little from youth with disabilities and it surprises us that they are capable of so much.
  I received a phone call from a lovely lady in Seagrave who said that Stephie would make a wonderful spokesperson for Autism Ontario because she is so articulate and genuine.
  A Letter to the Editor appeared on my desk from Virginia Bambrick, who wrote: “I found the column written by Stephanie Coveart in last week’s paper to be enlightening, humorous and very enjoyable. She obviously has inherited her mother’s skill at expressing herself in a most delightful way. (I don’t know who was more flattered, Stephie or me. I will be sending Virginia a cheque, at any rate.)

  With all the tests and diagnoses and doctors appointments and medications and therapy sessions – not to mention terror and utter fatigue – associated with Stephie’s early years, it took me some time to realize that my baby was a rare and precious gift, and that what she could do far outweighed what she couldn’t.
  As another parent of a daughter with special needs once said to me, “At least we’ll never have to worry about them coming home on the back of a Harley.
  It’s true. But it’s so much more than that.
  Born into a world that often seems evil and despairing and doomed to destruction, Stephie somehow remains good and sweet and pure and faithful and honest. And every time I look at her smiling face or watch her flap in excitement at the flight of a butterfly or am the lucky recipient of one of her fierce hugs or hear about her plans for a better world where no cats are set on fire by teenage boys, she gives me hope and the courage to keep believing.

• 

  StopGap: Ramping up for the accessibility challenge, one single step at a time

  STOPGAP: RAMPING UP FOR THE ACCESSIBILITY CHALLENGE, ONE SINGLE STEP AT A TIME

  

  Photo By Mike Pochwat, 2012

  Luke Anderson has always loved a physical challenge. As a kid growing up in Stouffville, Ontario, the natural athlete spent every spare minute biking, running and climbing. Later it was organized sports: “baseball, lacrosse – you name it, I did it.” But mountain biking was his ultimate passion, and after graduating with a degree in Civil Engineering from Waterloo University, he headed for the hills, moving to Rossland, British Columbia.

  It was there, in the fall of 2002, while mountain biking with a friend, that physical challenge took on a whole new meaning.

  “I bit off more than I could chew and came up short on a big gap jump,” says Luke. The result was a high level (C4-5) spinal cord injury that left him a quadriplegic. “In a split second, my life went from being this incredibly active, physically able 24-year-old guy to someone who is very dependent on others and my wheelchair to get around. And in that split second – and the ensuing months as I got used to this new way of life – I was introduced to a world not well suited to a person who uses a wheelchair.”

  Today, Luke finds it a challenge just to navigate the built environment, confronted daily with barriers to accessibility that people without mobility issues rarely pause to consider.

  The job interview

  Two years after his devastating injury, Luke turned his mind to gainful employment. “As I started to get more comfortable with my situation, I sent out resumes, looking for work as a structural engineer. And I got an interview at an engineering firm in downtown Toronto.

  “The morning of the interview, I did what everyone else does,” recalls Luke. “I got dressed up and I arrived early.” But for an applicant who uses a mobility aid, that wasn’t enough. Three steps separated street level – where Luke sat in his chair – from the entrance to the building, the elevators, and his potential employer. For Luke, those three steps might as well have been a mountain back in Rossland.

  “It was a cold, wet November day, and I sat there, waiting in the rain, wondering how the heck I was going to make it to my interview.” Fortunately someone coming out of the building told Luke about a back entrance. “It was a loading dock. I had to get in touch with the building manager, who went into the garage and moved all kinds of garbage to haul out these big, heavy, temporary ramps used for the snowblower.”

  After more than an hour of working through the logistics of just finding a way into the building, Luke arrived at the offices of Blackwell Engineering, soaking wet, freezing cold and late for his interview. Fortunately, “I must have said something right,” says Luke, who can joke about the experience now, “because I got the job!”

  A temporary fix

  For both Luke and his new employer, the challenge of that initial interview was just the tip of the accessibility iceberg. “Now we had to come up with a way to get me into the building so I could come to work every day.”

  The solution was to purchase a deployable ramp, which could be unfolded to bridge the gap between street level and the main doors. It sounds serviceable, but the ramp had to be deployed – then immediately folded and stored – each morning when Luke arrived and each evening when he left.

  Usually, the job fell to Luke’s good friend and coworker Michael Hopkins. “We grumbled and complained about the ridiculousness of the situation, and at the same time we noticed how many other people were struggling; people who weren’t using wheelchairs but had mobility issues of their own.” Delivery people lugging heavy packages would jump at the chance to use the ramp, says Luke, as would parents pushing strollers.

  “For more than five years (last year the building was retrofitted with a permanent ramp and an automatic door opener), I had to arrange to have someone meet me outside every morning when I got to work and go down with me every evening when I left. There was no spontaneity or independence. You can imagine how annoying this was, especially when Michael would get busy with other things or lose track of time or just forget. I was left downstairs often and this fuelled my frustration.”

  And this was Luke’s place of employment, where people were aware of his needs and had jury-rigged a way to accommodate them. There were countless other buildings in the city that were inaccessible to Luke and anyone else who uses a wheelchair. “Every visit to a building requires research. You have to check ahead. And I get it,” says Luke. “We’ve got a lot of venues in this city that are old and were designed at a time when people who used wheelchairs didn’t really participate a lot in their communities because they weren’t seen as people who could. But we’ve come a long way and it’s time to change things.”

  In addition to their daily kvetching, Michael and Luke would often discuss the widespread nature of the accessibility issue. Their frustration finally reached a tipping point in 2011. “We had to figure out a way to get the conversation started; to let people see how big the problem is. And that’s when The Community Ramp Project was born.”

  The StopGap solution

  Inspired by the success of The Good Bike Project – started by two OCAD employees who painted bikes in bright colours and left them locked up around the city to increase awareness about cycle friendly communities – Luke and Michael launched their own campaign, StopGap (stopgap.ca), which is run by volunteers who are inspired to create awareness about barriers to our built environment.

  “These brightly coloured bikes had caused a stir and got people talking,” says Luke. “We latched onto the concept and decided to go for the low hanging fruit, providing businesses with single-step doorways a free ramp painted in bright colours with our website highly visible so people would go there to learn more.”

  The first community ramp rolled out in The Junction in Toronto’s west end in the fall of 2011. There are now 130 ramps in six communities: The Junction, Kensington Market and Roncesvalles (also in Toronto), Stouffville, Orillia, Ontario and Cranbrook, Brtitish Columbia. To this point, local hardware stores have donated the materials, and volunteers have built and painted the temporary ramps, which are designed by Luke.

  Made out of lightweight plywood with a nonslip finish, the ramps can be deployed whenever there is a need. (The installation of permanent ramps requires a street variance for encroachment onto city property, as well as a building permit and more complicated, expensive design-to-code construction, which puts it financially out of reach for ‘mom and pop’ businesses.) The ramps are custom constructed to fit the step and are painted in red, yellow, green or blue – “obnoxiously bright” to generate conversation. StopGap provides participating businesses with a sign to put in the shop window, announcing that a ramp is available, and Luke is trying to encourage business owners to purchase an inexpensive call bell system to make accessibility virtually seamless.

  The businesses sign a waiver accepting liability for the use of the ramp and StopGap makes sure that owners understand the potential for risk and that ramps are deployed safely. “There are some businesses that do shy away from the risks,” says Luke, “and some business owners just don’t get it, which is unfortunate because everyone benefits from a ramped entrance.”

  The early adopters – those who responded positively to the survey StopGap distributed in their community and chose to receive a free ramp – are seeing an increase in their consumer base, “and a really interesting thing is happening,” says Luke. “Customers of businesses that are not part of The Community Ramp Project – in particular, customers pushing strollers – are demanding that the businesses they frequent have ramps installed.”

  The growth spurt

  This demand for accessibility has led to the first offshoot of The Community Ramp Project: Ramps on Demand. Businesses that are being pressured by their customers to have a temporary ramp available can now apply to Ramps on Demand to have a custom ramp built at cost (usually between $100 and $300) by contractors that are aligned with StopGap.

  And the StopGap organization, which has applied for charitable status, just keeps on growing.

  Early in June, StopGap inked a partnership with Dixon Hall, a multi-service agency offering a ‘hand up’ rather than ‘hand out’ approach to skills training for people who are considered at-risk and/or economically marginalized. The Dixon Hall Mill Centre, which works in partnership with George Brown College, local high schools and other non-profit community agencies to provide carpentry and home renovation training to more than 50 paid clients each year, has taken on The Community Ramp Project as an educational vehicle. “It’s an incredible partnership that will streamline our ability to get more ramps out there,” says Luke, whose ultimate goal “in the ideal world” would be to have a ramp in every Toronto doorway. “Once the Mill Centre locks down its funding for the year, likely some time in June, we will begin to canvas businesses.”

  The partnership is a direct result of a meeting between the StopGap board and Councillor Adam Vaughan, chair of the Disabilities Issues Committee, at City Hall last fall. StopGap received the endorsement of the committee and Councillor Vaughn passed along a few contacts, Dixon Hall among them. “We met with the coordinators over the winter and solidified the partnership this spring.”

  To celebrate, Dixon Hall held its annual fundraiser, Rebuilding Lives 2013 (Bridging the Gap, building ramps for a barrier-free Toronto), on May 29 and StopGap and its supporters were out in full force. “Twelves ramps were given paint jobs by professional artists and auctioned off,” says Luke, as well as prints of the ramps, “and it was neat to see how people reacted to a ramp as a piece of art.” The final figures are not available, but Luke says close to $40,000 was raised, with every penny going to the Mill Centre for ramp materials and client wages.

  Building higher, reaching further

  Part of the Ramps on Request Program, says Luke, is coming up with solutions for multi-step store fronts. “I am an engineer and I like solving problems. It’s kind of fun to figure out a temporary fix.” It’s not easy, though, and the answer is usually some type of modular structure, “like Lego blocks fitting together.” The challenge is to create a ramp that is easily deployed and easily stored. “I’ve come up with some concepts and we hope to have our first multi-step ramp constructed by the end of July. We already have a few requests.”

  Luke and the entire StopGap team are thrilled with the success of The Community Ramp Project. “Our brightly coloured ramps have generated a lot of interest. They’re working. They’re speaking for themselves. People get it. They often say to us, ‘It’s so simple. Why didn’t somebody think of it before?’”

  To truly understand a need, however, you have to walk a mile in someone else’s shoes, or in this case, wheel a mile in someone else’s chair. Luke encountered an obstacle and he conquered it, just like he did on his mountain bike. Now he would like to tour his accessibility solution from coast to coast in the spirit of Canadian awareness heroes Terry Fox and Rick Hansen. “I see a real opportunity to take this thing across the country,” says Luke, who is working on logistics and sponsorship for a cross-country tour. “I’d like to see a ramp project in every community in Canada.”

  ________________________________________________

  

  Photo By Mike Pochwat, 2012

  Luke Anderson takes his wheelchair lesson to the classroom

  Another wonderful side effect of the StopGap ramp project is the creation of community. “With the involvement of schools, for example,” says Luke, an ambassador with the Rick Hansen Institute and an independent presenter, “we can create awareness among children.”

  One of Luke’s post-injury passions is speaking at elementary schools. “I share my story with the kids and introduce the community ramps as a way to overcome challenges in life and to effect social change.”

  What is “really incredible,” he says, is that many kids have never truly encountered a person who uses a wheelchair. “At first they are timid, even afraid. But as soon as I start my presentation – with some jokes and activities that help them to understand what it is like to be dependent on other people – their apprehension disappears. It’s magical. At the end of my talk they come up to me with curiosity. It’s incredible.

  “I show them how physical barriers in our built environment prevent many of us from enjoying some of the amazing buildings and spaces that our cities and communities have to offer, but how a simple ramp can make life easier for everyone. I wrap up by asking them whether they would like to take on their own ramp project in their community, and there are a few schools that have accepted the challenge.

  “Kids often ask me if I regret making that jump,” says Luke, who dates, skis, sails and has recently reconnected with the cycling community as a coach mechanic. “I tell them if I hadn’t, I wouldn’t be here, meeting them, telling them my story and opening up their minds to a different way of life that is just as fulfilling and good and really pretty amazing.”

  One of the important lessons Luke teaches children is that accepting change can introduce us to new and exciting things and even make us better people. That’s the lesson readers take away from The Ramp Man, a book written by school principal Thelma Sambrook and Luke’s sister, Grade 1 teacher Logan Anderson, and illustrated by the Grade 6 students at Summit Heights Public School. The book was inspired by a live presentation Luke gave at the school and takes readers through Luke’s life: his devastating injury, his post-spinal cord injury navigation of a world that is not well suited to people who use a wheelchair, and his use of the powerful tools of optimism, perseverance and hope to tackle – and overcome – the barriers he encounters.

  “They did an amazing job,” says Luke, who encourages school kids to read The Ramp Man before he visits by way of gentle introduction and to get their minds working on some questions and issues beforehand. “The book is one more way of furthering awareness. Ultimately it is these kids I am speaking to who are going to be tasked with removing the barriers to our built environment.

  “We have a population that is aging and the Boomer generation will need sound, excellent solutions to a lot of accessibility problems. But above and beyond that, disability affects us all as we get older. We are all TABs – Temporarily Able-Bodied. One day every one of us will need barrier-free accommodations.

  “Our ramps are not a permanent or perfect solution – they are a stopgap solution; a way to get the conversation started and the wheels turning.” This is all in preparation for what is to come, says Luke: the Accessibility for Ontarians with Disabilities Act, 2005 (AODA) which is now law and will be fully implemented and enforceable by 2025. “I would like Toronto to recognize the benefits of inclusively designed cities and communities and to create legislation of our own ahead of the AODA Built Environment Standard, something we can show off to the world when we welcome the Pan American and Parapan American Games in 2015.”

   

  stopgap.ca

  lukewanders@gmail.com

• 

  Another bus, another year

  ANOTHER BUS, ANOTHER YEAR

  (Published in The Scugog Standard, September 2010)

  Nothing – not birthdays or New Year’s Eve – marks the passing of another year like the kids going back to school.

  While most of the moms I knew were counting down the days until they could hustle their children onto the bus the Tuesday after Labour Day each year, I was consumed with sadness. I didn’t want my kids to leave me. I liked having them around. And I sure as hell didn’t want them to be another year older – one year closer to leaving the nest. Each new grade brought its own kind of anguish.

  So, while the other moms were busy buying lunch meats and pencil crayons, I was cramming in as many last-minute activities as the kids could physically and mentally handle. No matter how much we’d done over the course of the summer holidays, I always wanted to do more. I was riddled with “I wish we’d done….” and “If only we’d gone…” bullets of regret. And instead of getting my kids back on their ‘school schedule,’ I kept them up with me on the couch, watching movies into the wee hours and sleeping in late the next morning. I’m not sure whether it was denial or defiance, but I was not going quietly into that particular night.
It wasn’t just the organizational challenge that school represented that so distressed me, although packing lunches and getting to the kids to the curb on time with their teeth and hair brushed and their zippers zipped was its own particular brand of hell. It was the fact that the new school year represented another incremental loss of my babies. Each September they slipped that much further away from me and I could see, very clearly, the day they would get on a bus or into a car or onto a plane and be gone for good.

  Since moving to North Durham, the Port Perry Fair – always on the Labour Day Weekend – has become my own personal harbinger of doom. The last hurrah of summer. I love it – and I hate it. Clearly, I’m a Gemini. But like everything else with me, it’s not that simple. I’m a cusper – born on the 20th of May, the last day of Taurus or the first day of Gemini depending on which calendar you read) – so I suffer acutely from ‘Torn Between Two Worlds’ syndrome and have a tenacity and single-mindedness that would emasculate most bulls. It’s the worst of both worlds and the work in apposition to drive me (and everyone I love) to distraction.

  I despise change, yet I get bored easily. I have a horror of the passage of time, but find that the hours slip by more quickly with each passing day. I like the old, but I don’t want to get old. Honestly, it’s a challenge just to get up in the morning. And so autumn is bittersweet. It is the best of times, it is the worst of times. It is my favourite season, and yet it is the the season that triggers the slow descent into winter melancholy.

  I love fall weather. The cool, crisp bright blue mornings, the hangover hazy afternoons, the still, chill evenings that beg for windows to be thrown wide. It’s laundry line weather, when sheets come back inside smelling like freshly mown hay. Canada Geese are winging their way southward, trumpeting the journey and beating the air with eager wings. The bright orange bellies of field pumpkins bulge above their vines. Everything seems fresh and clean. Colours are more vibrant. Leaves are crisp to the touch. The air has a snap to it. And yet, the sorrow begins for me when the first maple tree slips quietly into its harvest wardrobe. The crimson, golden, auburn beauty of the season takes my breath away, even as the first yellow school bus rumbles past my house.

  On Sept. 7, I walked my one remaining baby to the curb. Watching as the bus whisked my daughter away, nostalgia washed over me like a chilly autumn rain, and I waved good-bye to another year.

• 

  Prom Princess

  PROM PRINCESS

  (Published in The Scugog Standard, May 31, 2012)

  Last Wednesday night there was a princess in my garden, and if I hadn’t witnessed the transformation myself, I wouldn’t have known it was my own daughter. May 25 was Stephie’s high school prom, and she was breathtakingly beautiful.

  We wanted to keep her there in the garden, the most delightful and delicate of all our flowers, but Stephanie quickly tired of our fawning and fussing.

  We drove to the home of her classmate, Doug, the only other student in the Developmental Disability program that is graduating from Monarch Park Collegiate Institute this June.

  “Thank goodness you’re here,” said Doug’s mom, Megan, when we walked up to the family’s white picket fence.

  Tactile defensive, Doug had been practicing for weeks with his tie – not perfecting the knot, just tolerating the thing around his neck – and he was clearly at the end of his tether. Looking like Frank Sinatra with his suit and fedora, Doug settled down immediately when he caught sight of Stephanie. Radiant in her sparkling pink dress, with her glittering lips and megawatt smile, she climbed the front steps – in half-inch heels! – to greet her friend.

  Although the two were not attending the prom as dates, Doug presented Stephie (eyes averted) with a corsage of pink roses. She turned not to him, but to us, and said she thought she might cry – not because she would, but because it’s the sort of thing you’re expected to say in response to a kind gesture. Doug was fascinated by Stephanie’s hair, which he insisted was a wig, but for a young man who eschews touch, he needed little encouragement to take Stephie’s arm.

  We asked our kids to stand together on the walkway so we could take pictures. And because we were shooting footage for our documentary film, we asked them to dance for our cameras.

  This was uncharted territory. Our children are unaccustomed to intimacy. Stephie was shy and reluctant; Doug was having trouble dealing with the flowers that had suddenly sprouted from his classmate’s wrist. But they allowed Megan to arrange their awkward limbs; arms around each other, fingers interlaced. And there they stood, motionless, two lovely garden statues.

  To encourage movement, Megan and I sang, and our autistic children rocked together, almost imperceptibly, as we wept.

  That simple movement, caught in the soft, slanting light of evening, is something most mothers and fathers take for granted. There is a predictable rhythm to their parental journey: their children grow up, they attend prom, they dance. For parents who take nothing for granted – parents who have learned to delight in the ordinary – this twilight sway was a rare and unexpected gift. But our tears were bittersweet. The moment, for all its tenderness, was carefully orchestrated, and we were acutely, painfully, aware that our children will seldom have the opportunity to experience, understand and take pleasure in genuine affection.

  We were the only moms and dad standing in the line at the Eglinton Theatre, where the graduating class of 2012 was set to enjoy ‘One Night in Hollywood.’ This was the grads’ big night; their official launch into adulthood. It was not an event to be shared with parents, let alone a classroom EA. But Stephanie couldn’t have – wouldn’t have – done it without us, or Karen, who stayed with her once she disappeared into the ballroom and we were left alone on the sidewalk.

  The evening held no particular significance for her. She was thrilled to dress up and have her hair done, but prom wasn’t a springboard into anything more adventurous than a night out without us.

  It seemed like such a milestone to me but Stephie was profoundly unaffected. “Mom,” she said when she grew weary of my astonishment. “It’s just prom. It’s no big deal.”

  And to her, it wasn’t. My mistake was according the occasion the same significance I had given my boys’ graduation. With them, prom was a clear delineation between yesterday and tomorrow; a severance of the past from the future. They woke up changed. They woke up as almost-men, eager for independence and autonomy.

  On May 26, Stephie woke up with her hair still in pincurls, but that was the only discernible difference. For her, prom had already receded into insignificance. It was life as usual for our forever girl, and the future remained as fantastic and intangible as a unicorn.

• 

  I HEARD THE ANGELS SING

  I HEARD THE ANGELS SING

  

  Steph sleeping

  (Published in ‘The IDEAL Way to Cook’)

   When my daughter was born, I wept uncontrollably. Joy rolled down my cheeks in salty rivulets. I thanked God. I thanked the nurses. I thanked anyone who might have had a hand in giving me a baby girl.

  Except for the nursing, which was excruciating (she couldn’t maintain a latch and my breasts would ooze blood and pus), Stephanie was a perfect angel. She slept all day and all night. She slept through feedings and nothing woke her. None of the tricks – undressing her, dipping her hands and feet in water – would rouse her.

  Although I had nursed two babies, I went to La Leche League meetings to see if the experts could offer me any advice. I would come home from those meetings and tell my mom that Stephanie wasn’t like the other babies. They were all smiling and touching things and making gurgling noises and sitting up on their own. Stephanie slumped in my arms like a silent and broken koala, gaze unfocused, mouth slack, arms hanging limply at her sides.

  Every fibre in my body told me that something was seriously wrong with my beautiful baby.

  Stephanie missed all of her milestones. In spite of my concerns, the doctor insisted that nothing was wrong; that kids develop at different rates; that what I read in the books was meant to be a guideline only. But I wasn’t a neophyte.

  In desperation, I went to my public health nurse and requested a well baby check. I returned to my GP (the doctor who had delivered Stephanie) and took a different tack. Stephie’s shins were terribly twisted and I told the GP that I wanted to see the ‘travelling pediatrician’ who came to our small valley town once a month regarding my daughter’s legs. She finally agreed.

  And then all hell broke loose.

  The public health nurse, not surprisingly, found that Stephanie was significantly delayed in every area. The pediatrician took one look at my six-month-old baby and set off alarm bells I hadn’t even imagined. She filled the examination room with words like ‘spina bifida’ and ‘cerebral palsy.’ She made an emergency referral to the Children’s Hospital of Eastern Ontario (CHEO), which would soon become my second home.

  What ensued was a whirlwind of medical tests and appointments that yielded few answers. What we did find out was that Stephanie had severe tibial torsion. An orthopedic surgeon put a cast on her tiny right leg. Months later she would graduate to Dennis Brown boots, adjustable leather shoes with a metal bar between them that she would wear to bed for the next year.

  Stephanie did not sit up. Her tiny hands would open and close, open and close when she saw a toy, but her arm did not move. She did not seem to recognize me. She did not play peek-a-boo. She did not wave bye-bye. She did not speak. What she did do was cry, inconsolably, for 23 hours a day. Between 3 a.m. and 3:30 a.m. I could slide down onto a couch with her on my tummy for blessed sleep. No one could make her stop.

  My husband threw himself into work. My parents came to visit from Toronto once a month. The rest of the time I was alone with my wailing baby and two little boys.

  I came close to losing my mind. One night, with Stephanie in my lap screaming, I beat myself with my fists until I was black and blue. I was prescribed an anti-depressant. It helped. So did the visits from Faye, Stephie’s developmental worker. Between the two, they kept me sane.

  Stephie lifted her head off the floor when she was nine months old. She began rocking on her hands and knees a few months later. When she started to crawl, she stopped crying. Looking back, I think it was pure frustration at being able to do nothing. The will was there, the cognitive ability was not.

  For Christmas that year, the only gift my dad wanted was for Stephie to walk. On December 24, she took her first tentative steps. She was sixteen months old. She was our Christmas miracle.

  In January she stopped trying. We noticed new things. Her head would suddenly fall forward while she was putting blocks into a bowl. Her legs would buckle beneath her when she stood at the couch. Her hand went back and forth to her mouth in a strange and repetitive gesture.

  We went to see the neurologist at CHEO and she booked Stephie for a raft of tests. EEG, evoked potentials, MRI.

  The EEG, said Dr. Whiting, was one of the best they had ever seen. I was elated. She rephrased. The most conclusive – and one of the worst – they had ever seen. Stephie was having a seizure every 10 seconds. This helped to explain her developmental delay.

  Dr. Whiting used an analogy to describe Stephie’s condition. Imagine you are driving in the car and listening to a ball game. You are waiting for the score. Just as the announcer starts to speak, you drive under a bridge. He gives the vital statistic, but you don’t hear it. This was happening to Stephanie six times a minute. How could she possibly learn? She was missing too much information.

  We tried every possible seizure medication. Stephie loved to watch ‘Fish TV’ – goldfish swimming in a tank in the dining room. We named the fish after her medications: Clobizam, Frizium. We were down to our last fish – Depakene – when Stephie’s seizures finally stopped.

  She started walking again shortly after her second birthday. She learned her first word. “I-oh.” The name of our cat, Lion. Faye and I rejoiced together. Stephie still didn’t seem to recognize me, but she knew that cat. And she looked for him. It was huge. She worked her fingers in his hair. He was the perfect therapy.

  But I wanted more. Physio. OT. Speech. Sensory Integration. Anything I could get my hands on. I travelled the hour to the Children’s Treatment Centre several times a week, often falling asleep at the wheel of my car from stress and exhaustion. I was obsessed.

  And not only with Stephie’s development, but also with the cause of her undiagnosed disability. (70% of kids with developmental delay – or ‘mental retardation’ as one doctor arcanely put it, causing my jaw to drop – are never lucky enough to receive a label.)

  We had our well water tested. It came back with a higher than acceptable concentration of lead. There was a pulp mill across the river. I was convinced that this had damaged my daughter’s brain.

  Dr. Whiting sat me down in her office and gave me the best advice I have ever received. She told me I could either focus on a law suit or focus on Stephanie. I wouldn’t have time to do both. As for therapy, the best thing that I could do for Stephanie was to love her.

  And that’s what I did. I stopped sweating the details and I loved my daughter. Fiercely.

  I am not an overly religious person but I made a deal with God. If he let Stephanie live, I would cope with anything else.

  Thus ended the darkest period in my life. And when I opened the curtains and let the sun spill into the room, I realized that my daughter was a miracle. She was a gift that had been given to me to treasure; a special child who would never cease to delight; a beautiful soul overflowing with wonder.

  I threw away all of my road maps. I no longer worried about where we were going and when we were going to get there. I took hold of my daughter’s hand and together we set about enjoying the journey.

  Stephanie was diagnosed with autism when she was six. She despised touch, eye contact. She lived in her own world of animals, animation and Disney characters, but she welcomed me into it – and I went, happily and gratefully.

  At seventeen, Stephanie walks. She talks incessantly (and sounds just like her mother). She laughs. She hugs me. And she has never lost the ability to experience pure joy. She does it every day. Bare feet in the grass. A Frisbee, caught. A compliment.

  Simba is still her best friend. But she has opened her arms to embrace the people who adore her. (And anybody who has a dog or cat!)

  Her enthusiasm is infectious. She is loved by everyone her spirit touches.

  Stephanie cannot read or write or do math, but these are just skills. And she has so many other wonderful talents that compensate for any abilities that she lacks.

  It is not one’s ability to read a soup label or balance a cheque book that is the determination of a full and meaningful life.

  Stephanie has been enrolled in the associated program at school for her entire educational experience. She has no idea that she is different from the ‘mainstream’ kids; that she and her friends have ‘special needs’. What she does have is self-confidence. Oodles of it. And a profound sense of belonging, of fitting in. She is the happiest, most well-adjusted young lady I have ever met. And as a parent, that is all I could ever hope for.

  At one time, Stephanie was my greatest sorrow – a tiny tragedy that I had carried in my womb and brought forth into this harsh world. Not anymore. Stephanie taught me that the greatest gifts come wrapped in unusual packages. They don’t fit neatly under the tree, but they yield the most wonderful surprises.

  Although our life is not simple and the future is a frightening country, Stephanie is my greatest blessing. And if God came down to earth today and asked if I would like Him to make her a ‘normal’ girl, I would refuse. She is perfect. Just the way she is.

  I have always said that when Stephanie was born, I heard the angels sing. I realize now that they were saying good-bye to one of their own.

  _______________

  Comments…

   

  ‘Wow! And, some parents behave like it’s the end of the world when their kid gets a cold or a scrape! Based on this one excerpt alone, the “Food for Thought” parts of “The IDEAL Way To Cook” easily justify this wonderful book’s $25 price tag.’

   

  ‘Tracey Coveart’s piece is wrenching, poignant, yet ultimately uplifting.’

   

  ‘Beautifully written story. Brought me to tears.’

   

  ‘Very touching story. Thanks for sharing!’

• 

  A lesson in disability

  A LESSON IN DISABILITY

  (Published in The Scugog Standard, April 2011)

  I don’t like watching the news. This is a dangerous confession for a journalist, but I prefer to call myself a feature writer. Where real reporters concern themselves with hard news – politics, poverty, unemployment, taxation, wars, fires, car accidents and murders – I like to write about the happy side of the human condition. And so it was with the eye of a feature writer that I watched events unfolding in Egypt from my bed. And even as that nation was discovering a measure of freedom through peaceful protest – using social media to topple, in just 18 days, a dictatorship that has stood unchallenged for decades – I was bemoaning the loss of my own.

  I longed to feel the joy of the liberated Egyptian people, longed to join them in the streets for their celebration, longed to hold the microphone for men and women who were expressing themselves publicly for the first time in their lives. But I remained handicapped, hobbled by surgery, trapped in a fluorescent pink cast and relegated – for another three weeks – to a pair of aluminum crutches, the wicked instrument of the devil himself.

  I’m feeling a little self-pity, but I’m feeling much more sympathy – empathy – for people who have to live their life with physical limitations. How do they do it?

  I have learned a few tricks. You can tuck a can of Coke into your underwear (not just your pant leg – it slides out onto the floor if there’s any give to your waistband). If you absolutely have to go upstairs, you can crawl. Raised toilet seats. (Enough said.) Play on people’s sympathies (or fears).

  I think they’re worried about a WSIB claim at The Standard. Everyone is so solicitous when I’m in the office. Fetching me pages for proofreading, bringing me food, holding doors, rinsing out my Coke cans, giving my foot – propped up on a pillow in my desk drawer – a wide and respectful berth.

  At home, driving duties are shared by my son and my dad. Rob brings me meals in bed on the weekends, and Stephie feeds the cats and cleans their litterbox and fetches me the thousand things I seem to need every day. Collectively, I’ve never said ‘thank you’ so many times in my life.

  I can’t go grocery shopping. I can’t pick up my mail. I feel completely useless, utterly helpless. And more than a little prehistoric. How many people do you see on crutches these days? When you’re pregnant, all you see are women with basketball bellies. When you buy a new car, all you pass on the roads are vehicles of the same make and model. When you’re on crutches … you’re on your own. What do people do who break their leg? Stay indoors until they are completely healed?

  But at least my relative immobility is of short duration. Six weeks out of an entire lifetime is a small price to pay for the privilege of walking for the rest. So many other people are not as fortunate.

  Like my mom. At just 72 years of age, mom is confined to her motorized wheelchair and finds the very thought of leaving the nursing home draining. I get frustrated with her because she never wants to go out for lunch, but now I know why. I would rather starve to death than stump out to the kitchen on my crutches and make myself a meal, let alone get dressed, get out the door, get down the stairs, get into a car, get out of a car, get up on my crutches, get into a restaurant, get seated at a table, God forbid get to the bathroom, and then do the whole exhausting thing in reverse.

  I’m not the kind of person who likes to ask for help, and this experience has been both frustrating and humbling. Although I wouldn’t wish the ordeal on my worst enemy, it is something everyone should experience at least once. After a few weeks on crutches, you will never again take your ability to ambulate for granted and you’ll be a whole lot more sensitive to accessibility issues and the physical limitations of your loved ones.

  Although I’d like to burn my crutches when I’m finished with them on March 8, I won’t. I’m lending them to Rik, who’s having knee replacement surgery in May. If I’ve been a bear to live with these last 23 days, he’ll be a Tyrannosaurus Rex.

• 

  Post-op observations

  POST-OP OBSERVATIONS

  (Published in The Scugog Standard, April 2011 )

  As I write this column, I am propped up in bed, surrounded by pillows, empty cans of coke, crutches and my portable office. I survived hallux valgus surgery but what I might not survive is the recovery. It’s been a week since I was discharged from Ross Memorial Hospital in Lindsay after an operation to remove a bunion from my left foot and I have been out of the house exactly twice. I am not allowed to drive and I’m only supposed to get out of bed to pee. I am almost completely dependent on others and I’m sure they’re even more tired of it than I am.

  I was warned that the operation would be painful and this was true. My surgeon explained that he had essentially stabbed me. It’s called surgery rather than assault causing bodily harm and it took place in a hospital OR instead of a back alley but the body doesn’t make any distinction. The morphine injections might as well have been horsefly bites. They stung like a bugger and did nothing to ease the excruciating pain.

  By some Herculean measure of self control, however, I managed to refrain from moaning and swearing and screaming at three-minute intervals throughout the night. Not so the lady across the room. She’d had her knee replaced so she had grounds for complaint, but could she not have made some attempt to suffer in silence the way my bedmate to the right – who’d had her hip replaced – managed to do? Eleanor (hip lady) and I were able to laugh about it in the morning, but if I wasn’t convinced that all the bones in my foot had been broken while I was under anesthetic, I would have walked over to knee-lady’s bed and put us all out of her misery.

  For the first few days, the only thing that offered any measure of relief was a bag of frozen peas. After that, a cocktail of oxycodone, Tylenol and Advil seemed to do the trick. Now, my IV porthole aches, I have blisters on my the heels of my hands, my armpits are screaming, and when I’m up for any more than a few seconds, my toes turn purple and my foot swells up like a pulsating balloon. But I have found some small pleasures. Hooking rugs (not in an arts and crafts kind of way) and every errant bag and piece of clothing with my crutches as I limp around my cluttered home. And bathing. I can’t get my dressing wet or bear any weight on my foot, so I had to buy a special bag for my leg and a shower chair to sit on. Getting clean is an exercise in exhaustion. During my second attempt, I managed to break the tap with my super-human crutch strength and water just kept hemorrhaging from the faucet. I couldn’t get to the basement to shut off the water supply so I called my dad in a panic. Then it was Rick Mappin and his son Luke to the rescue.

  Mealtime is also jolly and our first morning was the stuff of slapstick. I had asked Stephie to put a can of Coke in the fridge the night before, but she has chronic fridge/freezer confusion. When I opened the former and discovered a Coke-free zone, I knew immediately what I would find in the latter. I mopped up the cola explosion while delicately balancing on my crutches and was trying to point out to Stephie the margarine container that was hiding in plain sight when I lost my balance and fell sideways. Fortunately a sharp corner and the flesh of my thigh broke my fall. A few minutes later, Stephie dumped her breakfast leftovers in the cupboard instead of the garbage can, then stepped in cat vomit, which she tracked all over the house before peeling off her socks. I cleaned the floor by stuffing a wet paper towel under my good foot and dragging it behind me. Then I got down on all fours to clean up the barf. I asked Stephie to grab me a paper towel, but I had used the last one for the floor. “There’s another roll on the bottom shelf of the pantry,” I hollered. After about five minutes, I got up and went into the kitchen. There I found my daughter staring at the pantry ceiling. I patiently indicated the bottom shelf and the paper towel roll and headed back to the bedroom, but Stephie didn’t follow. I had made the mistake of asking her to take the garbage to the laundry room and she was still wandering the house searching for that mysterious continent.

  That was pretty much all the fun either one of us could handle. We climbed into my bed and have stayed there ever since, relying on the indulgence of family and friends to sustain us while we watch chick flicks and crime dramas and get crumbs all over the sheets. Under any other circumstances, we might consider it a holiday.

• 

  Durham rescue volunteers go global and head to Haiti

  DURHAM RESCUE VOLUNTEERS GO GLOBAL AND HEAD TO HAITI

  (Published in The Scugog Standard, January 6, 2011)

  A year after a devastating and deadly earthquake and in the throes of a cholera outbreak that has killed tens of thousands of people, Haiti may not be in the media spotlight but it has not been forgotten here in North Durham. Members of the newly formed CANISAR – Canadian International Search and Rescue – branch of OVERT (Ontario Volunteer Emergency Response Team) are getting ready to make their first official deployment to the tiny Caribbean nation.
  “The need is incredible,” said OVERT coordinator Glen Turpin, who will join the team that hopes to leave the last week of January to bring water purification technology and paramedic relief to a medical clinic and an orphanage in the town of St. Marc, the epicentre of the cholera outbreak. “The water is still contaminated and the clinics are overwhelmed.”
  Thirty to 40 of OVERT’s 100 volunteer members have received special CANISAR training and five of those – including two paramedics and specialty technicians who have been trained in water purification – will be going to Haiti for at least a week to work alongside doctors and to train clinic and orphanage staff on how to use the water purification units the team will be bringing.
  “Each unit costs about $1,500,” said Glen, “and we’re hoping to bring at least one for the clinic and one for the orphanage. It all depends on how much money we can raise for the mission.”
  The team will also be taking a supply of aqua tabs – $2,500 for a box of 50,000. One tab will purify one litre of water. “Right now, they’re drinking whatever they can get their hands on,” said Glen, “but the lake, which is their main water source, is feared contaminated.”
  The CANISAR members will also carry with them a supply of antibiotics and as much medical equipment as they can afford – IV bags and tubing and syringes for administering anti-choleric drugs.
  The goal of the mission, said Glen, is to take pressure off the existing water systems. “Systems that are in place are overwhelmed. We’re hoping to provide an interim source of water until they get their supply stabilized.”
  Throughout Haiti, there are close to a million children living in orphanages and parents who can’t provide for their kids are dropping more children off every day. In St. Marc, the orphanage is caring for several hundred abandoned or orphaned kids.
  The medical clinic is treating several hundred outpatients a day in addition to providing care for those in treatment and chronic care patients. People who have contracted cholera have to be admitted for IV antibiotic treatment, said Glen. “You have to beat the cholera and then you can release them.”
  The severity of the disease – and the course of treatment – depends on how long the person has been infected. “If you catch it early you can treat it quickly, but it’s amazing how fast it affects people.”
  Just as amazing is the resilience of the Haitian people, said Glen a founding member of OVERT (1992) who was on the ground in Haiti after Hurricane Gustav struck the island in 2008. “They will do whatever they have to do to survive,” he said recalling a dish the Haitians call ‘The.’ “They mix dirt with a little bit of flour and make it into a cookie. Then they sun-bake the cookie and eat it. What little minerals are in the soil fills their bellies and takes off some of the growl.”
  The CANISAR team will take with them as much in the way of medical supplies and water purification equipment as they can afford to purchase. “A lot of the money and supplies that have been donated to Haiti haven’t made it to the people,” said Glen. “If you ship anything, it sits for seven months on the docks. We are carrying everything with us. We are literally taking our gear and our money right to the spot – it’s not going into an ambiguous coffer.”
  And the more money the group can raise, the more they can take and put to immediate good use. They team is flying by commercial airline and “we’d love to have our flights donated. The less it costs us to get there the more equipment we can buy.”
  The CANISAR team has a few thousand dollars put aside for the mission, “from a hodgepodge of donations, but we’re hoping to raise enough money at a special event on Jan. 7 to go. This is our first real kick at fundraising.”
  ‘One Night for Haiti,’ is the first monthly bar night OVERT has planned to raise money for its ongoing search and rescue and disaster relief efforts around the globe. Each month, “we are going to host a night of entertainment, great company and fun to support our brothers and sisters in less fortunate parts of the world,” said Glen.
  Musical guests this month, fantastic local band ‘Two for the Show,’ have donated their appearance and the owner of Heat Nightclub (129 Brock St. N., Whitby) is donating the venue and all the proceeds from the bar. There are no tickets for the event, which starts at 10 p.m. this Friday, but a minimum $10 donation is required at the door. And 100 per cent of the proceeds will go toward the Haiti mission.
  CANISAR has been in development for the past year, but OVERT, a registered charity (#8928 78560 RR0001) has been around, flying under the radar, for more than 15 years. A unique concept in community based emergency response, OVERT provides timely assistance during major incidents such as abductions, missing persons, natural disasters and other community emergencies. OVERT’s ability to adapt to different situations with a team of highly skilled and trained community volunteers provides its partners – primary response agencies (police, fire, EMS) – with a valuable resource without adding logistic or financial burden.
  “We’ve been there for all the major child abduction cases, assisting police and providing closure to families,” said Glen, “and we provide local emergency management teams with disaster relief. We’re a second-tier response, augmenting frontline emergency services and we’re a unique agency in this country.
  With CANISAR, OVERT’s worldwide response team, “our main mission will be emergency response overseas, with an emphasis on search and rescue. Our members include technical rescue personnel and paramedics, and we have eight K9 S&R teams that are specially trained in collapsed structure searches.
  “CANISAR teams will be on the ground around the world,” said Glen. “Whenever there is a disaster, we’ll be ready to go.” And the team plans to provide ongoing support to “high probability areas – critical parts of the world that tend to get hit a lot” – such as Haiti. “It won’t be a one-off thing,” said Glen. “In Haiti, we’ll be sending replacement filters for their water purification units and we will get paramedics down there again to help out.”
  Between training and deployment, OVERT members, both men and women, dedicate 12,000 person hours each year to help others in their time of need, in the local community and now, through CANISAR, they will reach their helping hands around the world.

  If you would like to make a donation to OVERT, cheques and money orders can be mailed to PO Box 54062, 8 King St. E., Oshawa, Ontario L1H 1A9. Donations can be made on-line at www.overt.ca (‘Make a donation’) through canadahelps.org and donors can designate funds for either OVERT or CANISAR. If you would like to make a donation to the Haiti mission, come to Heat Nightclub this Friday, Jan. 7, or contact Glen Turpin at turp.g@sympatico.ca. Cash donations can also be made at The Standard Newspapers at 94A Water St., Port Perry.

   

• 

  Recreating the joy of Christmas

  RECREATING THE JOY OF CHRISTMAS

  (Published in The Scugog Standard, December 2010)

  It’s beginning to look a lot like Christmas, but it sure doesn’t feel like it. At least not around our house.

  Even Stephie’s advent calendar – a thoughtful gift from her bus driver (who is acutely aware that I am time challenged and is likely afraid I’ll miss Christmas altogether without this tasty daily reminder) – sits sadly neglected on the kitchen counter. Not even chocolate can tempt me to keep track of the sleeps. Instead, I’m in full-blown denial because there is no way on earth I’m going to be ready for Christmas morning.

  But it’s not the speed with which the big day is approaching that is keeping me from finding my Christmas spirit as much as the lack of fanfare surrounding the holiday.

  I’ve made a half-hearted attempt at exterior decorating thanks to Canadian Tire Port Perry and Redman’s Crossroads. But even the temporary disappearance of a cat can’t tempt me into the depths of my basement storage room to retrieve my eight million tubs of Christmas decorations. I’m too cranky to haul the bins through the ceiling-high maze of crap in there, too old and plump to drag them up the stairs, and too busy (lazy) to unpack them only to repack them a few days later. Instead, I bought new stuff to light up the outside of the house that will join their brethren in the cellar come January – a few solar powered globes and snowflakes on garden stakes and a darling country crafty door hanger that says ‘Let it Snow’ (a sentiment doesn’t seem so jolly anymore) and flashes tiny multi-coloured LED lights at night.

  Ever joyful, Stephie loves all things Christmas and would dearly like me to unearth her vast collection of battery-operated caroling stuffies but I have no idea where they reside in the tower of tubs and making them operational would require locating a screwdriver in all that chaos.

  She is especially fond of Santa – from a distance. Many regular readers of this column will remember the ‘Tree Lighting Child Services’ episode on Queen St. a few years ago when I asked Stephie to pose with Santa for a photograph and she wailed, in the outdoor voice we reserve for imminent dismemberment, “MOM! Stop asking me to do things that make me uncomfortable!”

  As a result, we don’t make the annual pilgrimage to source out Santa at the mall and stand in line for an hour with hundreds of frazzled parents, hyperactive toddlers and bawling babies in their tiny red and green velvet outfits so Stephie can sit on the lap of a fat stranger and whisper her innermost longings into his ear while a teenager dressed like a provocative elf snaps her photo and charges us $25 for the experience. It’s a strange ritual when you think about it, but it’s as much a harbinger of Christmas as the endless renditions of ‘Baby it’s Cold Outside’ playing on every radio station when all you want is to have summer back and your air conditioning on.

  More than anything, though, it’s the Christmas specials on TV that are missing. When I was growing up, my mom would check the TV guide as soon as it arrived each week in December to see when the Grinch, Charlie Brown, Rudolph and The Little Drummer Boy were going to make their yearly appearance on our television screen. Then we’d huddle together in the living room to make our spirits bright. These evenings were inviolable and the cartoon specials were Christmas. By the time Dec. 24 rolled around and we had read mom’s battered childhood copy of ’Twas the Night Before Christmas, my brother and I couldn’t sleep for the sugarplums dancing in our heads. He’d sneak into my room and we’d lie awake together, eagerly anticipating the prancing and pawing of each little hoof.

  Today, we don’t even get a TV guide and Stephie has DVD copies of all the Christmas classics (as well as their generally awful remakes and sequels) and she watches them so many times throughout the year that I can barely bring myself to put them in the player.

  The Toy Drive helps, and Stephie and I will be at McDonald’s this Saturday doing our part to make sure that Christmas comes to every child in Scugog. And this year, after we’re done, I think we’ll cocoon on the couch with a mug of hot chocolate and watch every Christmas cartoon ever made. Just like I did in the old days.

   

• 

  Forget socks. This year it’s clocks!

  FORGET SOCKS. THIS YEAR IT’S CLOCKS!

  (Published in The Scugog Standard, December, 2010)

  With Christmas just one month today, it’s a good thing I checked my ‘potential junk mail’ folder over the weekend. It contained hundreds of suspicious e-mail messages dutifully quarantined by Compton Communications, and tucked innocuously amongst the ads for cheap libido-enhancing medications, promises of miraculous enlargement and tempting offers from a woman named Svetlana, was a bit of indispensable gift-giving advice: The best presents are always clocks.
This is something I didn’t know.

  I have never received a clock as a present. In fact, I would be a little insulted if I did. Such a gift would suggest to me that I was in need of a time-keeping device because I am either consistently early or late.

  The only time I have ever been early for anything was the year I forgot to put my clock ahead on the designated Saturday night in April. Sunday morning I arrived at a friend’s house for a birthday party and found her wearing oven mitts, a flour-covered nightie and a surprised look. She invited me in and immediately excused herself to get dressed. I spent the next hour gloating over the fact that our infuriatingly punctual friend was late. I was positively gleeful when she finally arrived at the door, exactly one hour after the designated time. “You’re late! You’re late!” I cried, prancing around the front foyer like a prize-winning pony. She bestowed upon me a glance reserved for the feeble-minded and said, “You forgot to change your clocks, didn’t you?” After that I made it a point to always arrive fashionably late and I am even now figuring out how to accomplish this feat at my funeral.

  There are two kinds of time as far as my friends and family are considered: Real Time and Tracey Time. I think a clock that told both might be a useful gift for my loved ones, but until someone invents one, I’m sticking with booze. You can’t go wrong with a nice bottle of wine. Even if the recipient doesn’t imbibe, he or she is sure to have friends who do. Perhaps the good soul would feel festive enough to decant the grape while you’re sitting in the living room exchanging gifts. And if he or she doesn’t think to offer, it would be in his or her best interest if you were to politely suggest it. After all, it’s not a good idea to drink alone – especially at Christmas time.

  But what if I’m just overly sensitive and clocks really are the best present? Certainly it would simplify Christmas shopping. No more loud ties and paisley socks – there’s a perfect clock for everyone. For the energy conscious, there’s the water clock, which converts ions into energy. No batteries or electricity required. Just add water (or any other electrolytic fluid, including beer) every three weeks. For the animal lover, there’s the alarm clock that crows like a rooster. For the taxidermist on your list there’s the Cuckoo Clock … crafted from the stuffed body of a dead cuckoo. For the paranoid, there’s the Spy Camcorder Clock, which cleverly combines a motion-activated video camcorder with a fully functional LCD clock. For the gadget guy, there’s the Rolling Ball Clock (remember Mousetrap?), which even comes in a Lego version. For the chronically fatigued, there’s the Sleep Phase Alarm clock that monitors your sleep patterns and wakes you at the optimal time. (I’m getting this one for my partner Rob. To heck with the wine.) For gaming and computer geeks, there’s the Pong Clock and the Functional Hard Drive Clock. For the fashionista, there’s the Digital Clock T-Shirt and for the masochist, there’s the Drill Sergeant Alarm Clock (this one wakes you up with a morning bugle call followed by an ‘inspiring round of orders’ from a drill sergeant). For the plutocrat, there’s the Money is Time Clock, which translates American dollars and coins into minutes and seconds, and let’s not forget the Sign Language Clock and the Braille Clock for your friends with auditory and visual impairments. There’s even a clock for the hopelessly nerdy: the Semaphore Clock, inspired by the flag signalling system.

  And while I did say that I would find the gift of a clock insulting, I wouldn’t be terribly offended if someone were to give me a clock that wakes me up by stuffing a piece of chocolate into my mouth. Even pride has its price.

• 

  Community embraces Pegasus, a mom’s mission

  COMMUNITY EMBRACES PEGASUS, A MOM’S MISSION

  (published in Neighbourhood Living Magazine, The Beach edition, Summer 2013)

   As a high school student with significant physical and intellectual disabilities, Andrew Perrotta had a good, full life in 1994, rich with friendships, activities he enjoyed and a healthy sense of belonging. He was part of a community that embraced him and gave his days purpose. But once he turned 21 and graduated, all that would end.

  Cutbacks to government social services had created lengthy wait lists for adult day programs for people with special needs, which meant that “Andrew and his school friends had nowhere to go and nothing to do after high school,” recalls Toronto mom Marie Perrotta. “There was no way for them to remain involved – no opportunity for them to enjoy any kind of meaningful life.”

  Fortunately, necessity is the mother of invention, and together with a handful of determined parents and professionals, Marie – a psychiatry research coordinator at Toronto’s Hospital for Sick Children – set out to create what did not exist: Pegasus Community Project, a registered charity that would provide adults with developmental and physical disabilities the chance to remain connected to community life.

  “We knew it was a long shot, but we had nothing to lose because there was nothing. In a way, we couldn’t fail,” recalls Marie. “There is nothing worse than nothing.”

  But the five women believed the idea would take off – and it did.

  Pegasus Community Project was established in 1994 and initially served five participants (or members) – including Andrew. “The idea spread like wildfire,” says Marie.

  The project’s first significant achievement was gaining the support of the City of Toronto’s Parks, Forestry and Recreation department. “We needed programming space and the Matty Eckler (Pape) Community Recreation Centre seemed to be waiting for us.”

  Four years later another local centre offered up a room, then another, and a fourth in 2000. Today, the four centres provide support and activities for 45 Pegasus members. Participants are involved in a wide range of social, recreational and vocational activities. Fitness – swimming, yoga, exercise classes, walking programs and competitive sports (“another part of life that people with disabilities often don’t get to experience,” says Marie) – factor heavily into daily programming. There are community outings, from trips to the Art Gallery of Ontario to concerts. There are library and drumming programs, instruction in music and literacy, as well as menu planning, grocery shopping, cooking and even an Iron Chef competition. Participants attend ‘studio,’ where they make gift items that are sold in support of the program, and some are employed for several hours a week at local daycares, coffee shops and grocery stores.

  Funding is an ongoing challenge – Pegasus hasn’t raised its fees in almost 20 years – but as awareness grows so, too, does the financial support base. Pennies for Pegasus aims to raise $10,000 this year and there are tournaments, concerts, dinners, dances, third-party fundraisers and grants from private foundations. The Ministry of Community and Social Services recognized this innovative project with partial funding, “and we have established some great partnerships,” says Marie. One of these is a new outreach sports and recreation program, Active8, which is run jointly with the city and is open to all people with disabilities, not just Pegasus participants. “We’ve always wanted to partner with the city,” says Marie, “and since we don’t have the resources to expand on our own, this gives us the opportunity to make our services available to the wider community.”

  But it is the Pegasus Thrift and Gift Store – an outgrowth of the annual community supported garage sale that Marie held at her home each year for a decade – that is the project’s most popular fundraising venture. “Our first storefront was meant to be our offices, a kind of outreach centre. But people kept coming by with donations!” It wasn’t until they turned the office into a store that people stayed to visit. Members work at the shop – it’s consistently ranked as one of their favourite Pegasus activities – and there has been a tremendous community response. “People come from within the neighbourhood and from all over the city to complete the circle,” says Marie. “The community gets to know our members better and our members get to know the community better.”

  In return, Pegasus is a very good neighbour, keeping its business local. “To be a part of the community you can’t just take,” Marie says. “You have to give as well.” And it is perhaps the giving that has made Pegasus members such a vital part of the community. “People with disabilities are generally viewed as being on the receiving end,” Marie says, but Pegasus members volunteer regularly, delivering local papers and flyers, participating as accessibility judges at Canada Blooms, lending a helping hand during neighbourhood cleanups, gardening at community rec centres, stuffing kits for local events including The Beach Spring Sprint and helping out in area stores. “People value their contribution.”

  Now in its 19^th year, the Pegasus Community Project “has been a remarkable journey,” says Marie, “from our participants, to our community members to our staff of 22 who bring their amazing skills to work every day. My family – many families – can’t recall life before Pegasus. So many wonderful people have come together to make this dream much more than I could have ever imagined.”

   

  Pegasus Community Project Founder and Executive Director Marie Perrotta’s social entrepreneurship has not gone unnoticed. She was named Citizen of the Year for Beaches/East York in 2004; received the Paul Harris Fellow Award from the Rotary Club of Toronto Beach in 2010; was named the St. George Society Citizen of the Year in 2012 (an honour that was accompanied by a $10,000 donation to Pegasus); and was awarded the Queen’s Diamond Jubilee medal in 2012.

   

  Pegasus Community Project
  931 Kingston Road
  Toronto, Ontario M4E 1S6
  416-691-6835

  pegasustoronto.ca
  info@pegasustoronto.ca

   

   

   

   

   

• 

  Steph on horseback

  STEPH ON HORSEBACK

  (Published in The Scugog Standard, September 2010)

  My daughter Stephanie is an animal girl. Autistic, developmentally delayed and epileptic, her speech was very slow in coming. When she did say her first word, it was not dada or mama but a singsong “eye-oh.” She was calling our cat, Lion. She couldn’t care less about us, but her eyes followed that cat everywhere. And when she finally did start to move her fingers, it was in his fur. Lion seemed to understand that he was Stephie’s best therapy and wherever she was propped up sitting, he was there on her lap, content to have his hair pulled out by the roots.

  When we moved to Whitby in 1996 from the Ottawa Valley, one of the first things I did was enroll Stephie in a therapeutic riding program.

  She loved the horses and even at five years of age showed absolutely no fear of the animals that utterly dwarfed her. But the riding itself did not come naturally.

  Stephie did not feel the motion of the horse. She did not understand the rhythm of its gait. She could not anticipate its next step. She was happy just to bounce along on the back of whatever beast she happened to be riding; a sidewalker at each ankle and a leader in control. She rode with T.R.A.C.K. in Uxbridge for the first two years, but when we moved to Seagrave in 1999, Stephie became a member of the Durham Therapeutic Riding Association (DTRA), which operated out of Cedar Valley Stables on Scugog Island.

  Michele Mueller was her instructor and Stephie blossomed under her direction. Michele’s goal was to get her special students riding independently, but it seemed as though Stephie would never master her rising trot, no matter how much her sidewalkers chanted “up, down, up, down, up, down” in rhythmic reinforcement as the horse jogged around the arena.

  And then one day, after Stephie had been riding for about eight years and I had given up all hope of her ever learning to post, she ‘up and downed’ all around the ring. A lightswitch had been flicked on somewhere deep in that complex brain. From the sidelines, I hooted and hollered like she’d just won a gold medal.

  Michele gave the riders a lot of freedom and shortly after Stephie learned her rising trot, she was allowed to ride ‘off-lead’ for part of her lesson. Although she didn’t know her right hand from her left (which made steering the horse a bit of a nightmare), she was riding independently.

  When Michele had to relinquish her therapeutic teaching several years ago to focus on her Olympic bid with her horse Amistad, DTRA moved to The Stables at WindReach on the Scugog/Whitby border. This Olympic facility was built by Sandy Mitchell, a Paralympic rider for the Bermudian dressage team and the visionary behind WindReach Farm, a facility that gives people with disabilities the opportunity to enjoy a hands-on, fully accessible agriculture experience. For the past few years, Stephie has been riding under Bev Connor, who is determined to offer the advanced riders in the DTRA program a more complete ‘horse’ experience.

  When Stephie was moved into the late group on Thursday nights, she was given the opportunity to untack, groom and turn out her horse. This was the first time she had done anything out of the saddle and I think the prospect of caring for the horses excited her even more than the riding them.

  Horsemanship quickly became the highlight of her week, and last Sunday, at DTRA’s annual Mini-Royal horse show, Bev asked Stephie and her two lesson-mates to be ‘barn brats’ for the day, helping with the horses. They were giddy with the sense of responsibility and bursting with confidence, but when I saw Stephie sidewalking and then leading a horse for another rider, I almost wept. Her smile was dazzling; her pride palpable. She was no longer being helped. She was helping. And I can’t thank Bev enough for giving my daughter such an empowering opportunity.

  Bev was equally elated. After the last horse was brushed out and back in its stall, she put an arm around Stephie and her riding buddy Christie and beamed. “I heard them telling the kids to ‘Use a little more leg’ or ‘Try the right rein,’” she cried, pumping her fist in the air. “I taught them something!”

  Not something. Everything.

• 

  A real wipeout!

  A REAL WIPEOUT!

  (Published in The Scugog Standard, April 2011)

  You’ve been there. You head to the bathroom and are horrified to find there are just a few sheets left on the last roll of toilet paper. Defying nature’s call, you make an emergency trip to the grocery store to replenish your vanity cupboard and are confronted with an entire aisle of TP choices.

  Before the Chinese invented toilet paper in the 14th century, things were a lot simpler in the personal hygiene area. People used whatever was at hand. Literally. In the Middle East – presumably because one eats with the right – it was customary to wipe with one’s dampened left hand, which is why folks in these parts still find it offensive for someone to proffer a left-handed greeting. (Not sure what lefties were supposed to do…. Never eat? Never greet?)

  The Greeks apparently used clay (which baffles me) and Europeans made use of anything they could lay their hands on – leaves, grass, moss … the cat. (I’m not sure about the cat.) The Romans were a little more civilized. They used a sponge on a stick, which sat in a bowl of salt water and was replaced as necessary. As necessary? Wouldn’t that be AFTER EACH USE?! It begs the question, did everyone in the family use the same sponge or did they each have their own, clearly labelled or colour coded?

  Because sheep were plentiful, the Vikings used wool – hopefully after it was sheered and not still attached to the animal. But it was the Americans who took the cake. In the rural United States, they used corncobs. Clearly comfort wasn’t a big consideration. Neither was hygiene. The corncob hung from a piece of twine in the outhouse, so everyone could take a swipe. In coastal regions, where corn was scarce and abrasions plentiful, a mussel shell was used in place of a cob.

  In more populated areas, people used the pages of the Sears Roebuck catalogue (which could last one resources-conscious family an entire year), old newspapers (don’t throw away this edition of The Standard just in case you ever find yourself in dire straights and without a corncob handy) and, in wealthy households, pages from poetry books, which presumably could be recited fondly one last time before meeting their Waterloo.’

  Today, there is no need to be so resourceful. There are, however, decisions to be made. Single or two ply? Quilted? Kittens or bears? And most importantly, new material or recycled? I’m all for reducing my carbon footprint, but let’s get serious. Would you sooner attend to your bottom with a cotton ball or a slice of tree bark?

  My friend Deb, a flag-carrying greeny, once convinced me to buy a hotel-sized pack of 100 per cent reconstituted toilet paper from Costco. I think I would have preferred the mussel shell. At least I wouldn’t have paid a premium to debride my nether regions. Testing out the new product, my children howled from the bathroom, wondering if it was advisable – or even possible – to apply a BandAid ‘down there.’

  Deb swears she doesn’t notice the difference between new and ‘used,’ but I am reminded of that old fairytale about the Princess and the Pea. Deb clearly wouldn’t have felt a little bump in the mattress. Of course, this is more akin to sleeping on a small village reduced to rubble. Still, it’s hard to ignore the facts according to www.treehugger.com (sent to me by Deb just the other day in an effort to get me to repent my sinful ways):

  -In the US, more than 98 per cent of the toilet paper sold is harvested from virgin forests – and this number is increasing.

  -Americans go through three times as much toilet paper as the average European and more than 100 times more than the average bathroom visitor in China.

  -The softer the toilet paper, the more likely it is made from old growth and virgin trees. (The wood fibers are longer, which creates a smoother surface.)

  -Each year, one million miles worth of cardboard tubing – the ‘donut hole’ in the middle of the roll – is tossed out (hopefully in your paper recycling bin). That’s enough to circle the globe more than 40 times.

  We’ve come a long way from our sustainable corncob days. We are a shamefully, shortsightedly wasteful, pampered society. And at some point – to save ourselves, not to mention our children and our planet – we are going to have to sacrifice comfort and convenience for conservation. Bring on the recycled toilet paper … and the callouses.

   

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