Tag - special needs

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Parenting Exposed (literally)
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Waiting Room Worries
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Tiny Dancer
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TIFF Kids—special films for special kids
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Her Special Squad
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Carcinophopia—Fear of Cancer
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Avery’s Moment In The Spotlight
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The Bawl Ball
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Tears Of A Ukulele
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The Kindest Thing A Friend Ever Said To Me

Parenting Exposed (literally)

Parenting makes us vulnerable. We expose parts of ourselves we never imagined we would – emotionally and in some cases, physically. Something happened several years ago that I’ve only shared with a select few. I feel like now is a good time to dust off the details and share it out loud because I can laugh about it now.  Back in the summer of 2011 when my daughter was a spunky five-year-old, we were invited to attend a big outdoor children’s event. I didn’t want to go. It was difficult taking my daughter out back then. She’s a precocious kiddo whose physical and cognitive delays make it tough to rein her in sometimes. But my son who was obsessed with lizards at the time was desperate to see the reptile show at the party. His needs frequently come second to his sister’s—which is often the case of siblings of kids with special needs. He was so looking forward to holding a Bearded Dragon, how could I deny him that (creepy) pleasure?  We were at the event less than five minutes when Avery stuck a sponge covered in green paint in her mouth, picked up a pile of goose poop in her[…]

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Waiting Room Worries

My husband and I have sat in many waiting rooms over the past few years, anxiously awaiting news. It’s scary, and nerve wracking, and lonely—your basic trifecta of darkness.  But thankfully and luckily and gratefully (your basic trifecta of good fortune) our children’s surgeries have gone well. Yes, I said children.  I rarely write about our developmentally typical boy child. He’s a full-on teen now and his stories are his stories to tell. But recently he had to have surgery. He’s the kid we don’t have to worry about or fill out complicated medical waivers for. I actually said something to that effect not long ago so apparently I jinxed it. Anyway, it was fine. He is fine. I asked him if I can share a bit about it at some point because we learned some things from this experience that I know other parents can benefit from. He said, “Sure,” with a shrug. So I’ll get to it one of these days.  But back to the undisputed star of this blog—our developmentally atypical girl child. She has several surgeries under her belt—none as serious as some of the ones friends’ children have gone through. But, there have been risks and[…]

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Tiny Dancer

My daughter is a dancer. Yes, she mixes up the steps and goes in the wrong direction at least half the time, but she doesn’t care one bit. She gets distracted and stops mid-step to wave to me or to watch herself in the mirror. And sometimes she trips and falls, but she always gets back up, smiling. She loves to dance. And lucky for us, she can.  We had been at another dance studio, but out of the blue the owners decided that a class for students with special needs was too time consuming, too much work, just too much effort. It reminds me of this story. So our tiny dancers were displaced and disillusioned.  But we’ve fallen back in step and been welcomed with open arms at our new studio.  Avery’s dance teacher is warmth and encouragement and inspiration. Miss Stephanie treats her special students the way treats all of her dancers. She pushes just enough and cheers them on. She’s choreographed the most wonderful dance for the girls to perform at the spring showcase—on the big stage in pink sparkly costumes, with grown up hair and fancy make-up. They’ll be dancing to Superstar by Love Inc—a perfect anthem[…]

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TIFF Kids—special films for special kids

  My eldest child has been making short films since he was old enough to use an iPad. One of his earliest was an iMovie project called, “A Video For A Special Sister.” He showed it class by class at his school in an effort to teach his peers what it’s like to have a sibling with special needs. The technique was amateur, but his message was mature beyond his years. Is it possible to be a doting stage mother if my child is behind the camera? Anyway, like some sort of cosmic cinematic kismet, a fitting showcase is coming to the TIFF Kids International Film Festival this year! My son and I are going to view the Jump Cuts Young Filmmakers Showcase—short films created for young people by young people.   This year’s theme challenges young filmmakers (grades 4-6) to create an onscreen representation of a disability. It will be interesting for my mini Spielberg to watch how his peers approach filmmaking, editing, and story telling. I wish he had known about this earlier and could’ve entered. He’d have won for sure! That was my dramatic stage mother voice again, wasn’t it? Speaking of disabilities (seamless segue, I know)[…]

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Her Special Squad

Kids can be cruel. They can sniff out “different” from a mile away, and sometimes they tease or isolate anyone who doesn’t fit in. As a teacher I’ve seen it. And as a parent, I’ve worried about it. But so far we’ve been blessed. I’m not a religious person so using the word blessed seems hypocritical, but it’s a fitting way to describe our experience with our daughter’s peer group. Our child stands out in class—her delayed speech, the EA who shadows her around school, her struggle to keep up, and her inability to understand—these all set her apart. But instead of shutting her out, her classmates circle around her and make her feel special in a “you belong” kind of way. Her teacher told me her friends actually bicker over who gets to take Avery to the office or who gets to partner with her for a project or stand beside her in line. I know Avery feels it. She adores her friends and talks about them with such love. As a mum, I am grateful for these compassionate kids. Their parents are obviously teaching them to treat others with respect and kindness. For that, we (personally but also[…]

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Carcinophopia—Fear of Cancer

Did you know today is World Cancer Day? I wasn’t familiar with this event until I saw it on Twitter this morning. Or maybe I did know but chose to stuff it deep down into that place where I keep all my fears about it. And I should tell you, the place is full. It’s busting at the seams because talk of ‘it’ is everywhere.   You can probably name at least ten people in your life who’ve been diagnosed. And like me, you may have lost somebody close to you because of it. (I try to not directly refer to ‘it’ by name if I can help it. It’s easier to ignore when it’s unacknowledged.) I’m obviously afraid of it. Unlike a fear of sharks or getting swallowed by a sink hole, this disease is a more statistically plausible threat. We’re a pretty Cancer Phobic society—focused on a killer that may or may not ever come for us. Realistically we’re more likely to die of heart disease in North America than from cancer and yet we hyperfixate on the Big C. Is it any wonder so many of us suffer from Carcinophobia?   Cancer is in the news every[…]

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Avery’s Moment In The Spotlight

Last summer my brother and his family hosted a breast cancer fundraiser in their yard—”FraserFest” was an outdoor concert with bands and food and fun under the stars. But before the stars actually shone, there was rain—crazy heavy rain, strong winds, and even a tornado sighting. To wait out the weather, the adults huddled under the porch while the kids hung out in the basement. When I came downstairs to see what they were doing, I found my daughter encircled by a group of the kindest kids you’ve ever met. Only an hour earlier Avery had been in tears—she couldn’t understand why she couldn’t perform on the stage with the band. “Puh-lease!” she begged. “I want to sing on the stage.” Now, thanks to these big hearted kids, it was her moment and she basked in the glow of the spotlight. Thanks kids. You made this kid’s heart swell. 🙂

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The Bawl Ball

Sometimes our expectations don’t live up to reality of a situation. This is why I try to keep my standards high, but my expectations low. This is a strategy shared with me by a friend. In her case, she’s referring to dating in her forties, but it applies in most life situations—essentially, don’t ever accept being treated as “less than”, but also readily expect to be disappointed. Sometimes reality bites. I forgot this lesson recently and it wasn’t pretty.  But you know who IS pretty? This girl. A friend generously offered Avery a pair of tickets to a Father/Daughter Charity Ball. Her family couldn’t use the tickets and the mom, who is kind to the core, knew how much our girl would love the spectacle of it all. The evening is sparkly and pink and musical and magical. Plus, dancing with daddy. All the things she loves. As the ball approached, we shopped for a dress and shoes. Avery spun around in the store and used the twirl test to choose a pretty black dress with golden flowers. We did her hair and make-up, she wore jewelry and fancy shoes, and her dad matched his tie to his little girl’s dress.[…]

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Tears Of A Ukulele

Family is everything. I could easily end this post with that. Because when you boil it down, your family loves and supports you. And they go out of their way to make your life better. Mostly. Without my family, I honestly don’t know what I’d do. They make life easier, happier, safer, greater. I love you my family. This weekend my sister-in-law kindly lent us her family. While my handy bro renovated all three of my bathrooms (SO gorgeous… just wait until you see the after photos!) my niece and nephew hung out with us. It was a glorious cousin palooza. Avery is obsessed with her older cousins—not at all surprising considering they teach her so much and make her feel like the most important, most loved kid. When Sunday came and the big kids were packing up to leave, she just couldn’t bear it. So without a word, she slipped upstairs to the music room to express her emotions. With giant tears and her pink ukulele, she composed this song. I snuck upstairs to record her—not to mock her very real pain, but because it was so ridiculously cute, creative, and heartfelt. I simultaneously snort laughed and choked back[…]

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The Kindest Thing A Friend Ever Said To Me

  The time she baked me a cake. My best friend is a great listener. To be friends with me this past thirty-seven years, she’d have to be. I can be a bit of a windbag. I’m owning it.   Unlike me who sometimes spits out words without tasting them first, she chooses her words carefully.   She gets why I worry about my special girl. And she knows I’ve struggled to come to terms with the realities of having a child with special needs. She understands how the life I imagined for myself is both exactly and not at all what I had expected.   As we sat in her garden, sipping wine, I told her about a family I met several years ago whose daughter then, reminds me so much of my daughter now.   My Avery was just a toddler when I met this family at an activity group for kids with a variety of special needs. The girl was about nine—the age Avery is now.   She, like Avery, didn’t have any dysmorphic features. At first glance, she appeared pretty typical. It was when she spoke that the disparity between her chronological and developmental age was[…]

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