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When A Stranger Has No Social Filter…
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Three Nurses Whose Secret Medicine Makes Them Exceptional
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I Have A Few Choice Words For That Judgemental Woman
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The Truth About The Urgent State of Climate Change
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When Your Child With A Disability Is Told, “You Can’t Play With Us!”
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Three Generations of My Family Fell For Financial Fraud
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Epilepsy
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Disabilities Are Not “Special Needs”
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Are You Happy? If Not, Why?
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25 Quotes About Parenting A Child With Disabilities

When A Stranger Has No Social Filter…

When it comes to social graces, some people completely missed the boat. Were they born without a filter or did something happen to make them that way? I have no answers here, but I do have a story.  A few months ago I was at the grocery store with my daughter and the cashier criticized my parenting. No qualms, no mercy, she flat out tried and convicted me without knowing a thing about me or my daughter. You can read about how enjoyable that was HERE.  Turns out, this was the same cashier who a few years earlier (she’s a lifer at our local grocery store… lucky, lucky us) berated my friend in front of a long line of customers. She made a snap judgement about her parenting (she is a wonderful, loving parent by the way), and called her out for being what she deemed “a negligent parent.”  Seriously lady?! a) Who do you think you are? b) You had no idea what this mother was dealing with that day. c) Ever heard of customer service? d) If you don’t have any nice to say, zip it. e) Your conveyer belt is always sticky.  Yesterday my sister in law and[…]

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Three Nurses Whose Secret Medicine Makes Them Exceptional

Back in University the nursing students were cool AF. As I rotated between sociology and anthropology lectures (not cool as anything) I admired them. They were good at science and not afraid of blood, needles or germs. Other than nursing a few hangovers, and “Nightingaling” my kids over the years, a career in nursing was never in the cards for me. Though nurturing by nature hospital smells have been known to make me faint. Plus science is like, really hard.  Thank god for nurses—qualified, kind-hearted, non-fainting souls—who have cared for my family over the years. As the parent of a child with disabilities, I’ve had my share of interactions with nurses—mostly positive. There were a few Nurse Ratchets, but I get why they’d be snappy at the end of a long shift dealing with needy sick people.  There are three nurses in particular who have made a lasting impression on me. They are all skilled professionally, but their secret medicine, humour, makes them exceptional.  Maternity Mayhem Nurse No disrespect to doctors, doulas and midwives—you folks know your way around a dilated cervix. But huge props go out to the amazing nurse who looked after us after the rather horrific birth of our[…]

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I Have A Few Choice Words For That Judgemental Woman

My daughter is CHATTY. There’s rarely a moment of silence with her around unless— a) she has a mouthful of food. b) she’s sleeping (though she talks in her sleep a fair bit). c) I’m brushing her teeth but even then, she manages to hum. d) she’s absorbed in sending a text (which is essentially digital talking) or watching TV.  Her chattiness is amazing considering her “profound speech delay.” Perfectly formed sentences be dammed, if she makes an observation or has a question, you’re going to hear about it.  She might know what she wants to say, but finding the right words is a struggle. I’m having a similar issue at the moment. I’m forgetting the names of simple household items and stumbling over my words. Turns out this is a very real and very annoying side effect of peri-menopause. Oh hoorah, good times ahead.  Anyway, that’s to say, I get it. It’s incredibly frustrating to know what you want to say, but due to wonky wiring between the word bank in your head and your mouth, the words escape you.  As Avery’s family, we almost always know what she’s trying to say and we usually let her finish on her[…]

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The Truth About The Urgent State of Climate Change

Inspired by a presentation given by Canadian environmental scientist, David Suzuki, my son delivered an impassioned speech of his own at school on the topic of the urgent need for environmental rehabilitation.  His words echoed that of Suzuki as he explained that the days of merely preserving nature are over. Alarmingly, many scientists believe that 90% of humans will be gone by the year 2100. This horrifying revelation is not science fiction, but based on scientific data related to overpopulation, environmental destruction, carbon pollution and climate change. Our kids understand the urgency and want to be the difference that saves our planet. Unfortunately, adults with the power to execute change, aren’t listening. Suzuki’s concern and underlying frustration was apparent, “Who needs nature in a city? We have Netflix,” he said. His tongue-in-cheek statement refers to our obsession with technology. We’re too distracted and desensitized to comprehend or even notice the gravity of our situation. I can’t get his words out of my head and I want to shout from the rooftops, “Wake up!! We need to do something!” Earth, air, fire, water. These are fundamental needs. Without them, life will cease to exist. We know this, but do we understand the[…]

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When Your Child With A Disability Is Told, “You Can’t Play With Us!”

  My daughter loves playing at the park at the end of our street. She’d stay for hours if she could. But since she’s a child with a disability, she can’t go to the park by herself like her peers do—they can come and go as they please, but my kiddo has to drag her mother along. “Drag” makes me sound like an unwilling companion, but I’m usually content to supervise. Though some days, admittedly it’s inconvenient. And boring. After a few pumps on the swing and perhaps an (awkward) chin-up or two on the monkey bars, my thoughts quickly turn to, “I need to start dinner” or “I have to return that phone call by 5pm” or “I have to pee” or “I wish I brought more coffee” or “I really, really have to pee.”  But she’s a kid who needs fresh air, and climbing and swinging, and companionship, and your basic childhood fun, so I park myself at the park.  Yesterday was a beautiful spring afternoon so I was happy to spend some time warming the park bench.  Within a few minutes of arriving, the play structure filled with kids from Avery’s school. They quickly organized a game of[…]

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Three Generations of My Family Fell For Financial Fraud

These days it’s unlikely you’ll be pickpocketed in the city square by singing and dancing orphans (think “Oliver Twist”). It’s more likely you’ll be mugged without even leaving your home. Financial fraud can happen anywhere, anytime, to anyone…and you aren’t even compensated for your loss with a jaunty dance number.  I have a few infuriating experiences of financial fraud to share that have been committed against three generations of my family this past year. Kids, seniors, and people with disabilities especially, are ripe for the picking. These shameless thieves don’t discriminate. Hopefully by sharing what happened to us, (along with some helpful tips from TD!) you’ll avoid the sting of scams like these…. and the new ones cropping up every day. Gen Z—Tweens and Teens My teen is uber tech savvy. Without him I wouldn’t know which remote to use to turn on the TV. But, this doesn’t mean he’s immune to fraud. In fact, he was duped into forking over money (ahem, MY money) for an app. He thought he was paying a one-time-only fee. It turns out the payment was charged to my credit card automatically every month. When I finally noticed and figured out what the charge[…]

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Epilepsy

Sometimes I forget our daughter has Epilepsy. But only for a second. We’re incredibly lucky her seizures are suppressed by medications, but it’s impossible to forget the traumatic years when they were not.  Avery’s first major seizure happened when she was three and a half. I shared the story of what happened in every painful detail. I’m sharing the link again HERE. Even after all this time, I find it difficult to read. Even though it was nearly eight years ago now, those seizures just before Avery turned five were brutal.  Every year since she has an EEG to assess the seizure activity in her brain. And every year while we wait for the results we hope for the news that there is no seizure activity or that the electrical abnormalities remain unchanged, in equal measure.  It may sound odd to hope for no improvement, but if her brain activity appears normal the neurologist will take her off anticonvulsants. And this could mean more horrifying seizures.  When neurons discharge inappropriately they cause abnormal electrical impulses in the brain. This results in seizure activity which can lead to abnormal motor activity or convulsions, and loss of consciousness, and if not controlled as soon[…]

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Disabilities Are Not “Special Needs”

It’s taken a decade of research into genetics and specific diseases and disabilities for me to gain even a fraction of understanding of my daughter’s syndrome. I still have no idea what I’m doing half the time. And I make plenty of mistakes.  Case in point—until recently I didn’t even realize that the label “special needs” was outdated and unacceptable. I’m immersed in this community, yet I was unaware. And if missed this, maybe you did too? I’m not easily offended. I curse, I make gross jokes. I try not to take what people say too seriously and I try to cut people some slack when they say the wrong thing. We all slip up. Words don’t tell the whole story. Our actions and intentions define who we are.  But, when we are told point-blank that something is offensive, we should pay attention. Isn’t it our responsibility as compassionate citizens to do no harm whenever possible? And seriously, updating our vocabulary costs us nothing. Let’s take the r-word for example. I’ve written about it quite a bit over the years. The word itself is harmless. It means late or delayed. When used appropriately, it should cause no harm. But it does.[…]

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Are You Happy? If Not, Why?

If you’re happy and you know it, clap your hands. What, no clapping? Aren’t you happy?!  Well, don’t let that make you sad because not many of us are consistently happy. According to the studies anyway. Science has us pegged as a sad sack of SOBs just trying to make it until cocktail hour.  My daughter however, she’s perpetually happy. She gleefully claps her hands all the time for no apparent reason. It’s like a happiness explosion where her joy just can’t be contained and the sudden burst of happy claps is a way to let it out.  I consider myself a very happy person, but I can’t say I feel “happiness explosion happiness” in adulthood very often. But alas, nobody is as happy as Avery. She doesn’t fit the typical mould. She doesn’t worry. She doesn’t know fear. And there’s zero hate in this kid’s world. It just doesn’t exist for her. I’d say she’s 90 per cent happy—9 per cent ‘meh’, when she’s tired or told, “No, you can’t host a play date right now.” And 1 per cent legitimate sorrow, usually when she’s missing a loved one. The rest of the time, bliss.  I get the sense[…]

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25 Quotes About Parenting A Child With Disabilities

Here are a few quotes about parenting that never fail to deliver a ray of sunshine on the difficult days. Feel free to leave a comment with a favourite quote that inspires you. 1. “Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It’s about understanding that they are exactly the person they are supposed to be and that, if you’re lucky, they just might be the teacher who turns you into the person you are supposed to be.” ~ Joan Ryan 2.  “One of the great things that any community can do is not teach tolerance, but live tolerance, not talk respect, but live inclusivity.” ~ Michael Pritchard 3.  “The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart.” ~ Helen Keller 4.  Don’t focus on what she can’t do. Focus on what she can do. Like a boss. ~ Lisa Thornbury 5.  “Parents of children with special needs create their own world of happiness and believe in things that others cannot yet see.” ~Unknown 6.  “Sometimes the things we can’t change end up changing us.” ~ Unknown 7.  “Listen[…]

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