Category - Special Needs

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Waiting Room Worries
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Small Kids, Big Worries
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Tiny Dancer
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Family Films and Fun: 2016 TIFF Kids International Film Festival AND digiPlaySpace
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Her Special Squad
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When Doctors Make Mistakes
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Avery’s Moment In The Spotlight
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The Bawl Ball
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The Kindest Thing A Friend Ever Said To Me
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When Your Kid With Special Needs Is A Rock Star!

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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Small Kids, Big Worries

Anxiety is a pain. Whether we come by it genetically or situationally, it hits all of us at various times in our lives. I’ve written about my struggle with worry—as a parent of a child with a variety of medical issues, I worried about our girl a lot. I looked too far ahead and fretted about the what ifs. I couldn’t stop the catastrophizing.  When you live in the past or in the future, you miss the present, and that’s where all good stuff happens. So I did the cognitive behavioural therapy exercises and it made a world of difference. Don’t get me wrong, I still have moments where I freak the hell out, but I know how to reign it in. This whole being mindful thing is a work in progress.  Adults coping with anxiety is one thing, but what about children with anxiety? Watching your child worry is like being poked in the stomach with a sharp stick.  I’ll unabashedly tell you about my battle with my worry monster, but sharing someone else’s story is offside. But I can say that having a sibling with disabilities can create fear and anxiety for good reason. Watching your sibling choke 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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Family Films and Fun: 2016 TIFF Kids International Film Festival AND digiPlaySpace

I think I may have given birth to the next George Lucas. My son has been making videos since he was little. #toddlersandtripods From early on he’s scripted mini movies, created stop motion animation and made documentary style shorts about topics he cares about like animals and basketball and Star Wars. His films have become more complex and creative. For now it’s a hobby, but perhaps it will turn into a life passion? C’mon kid—mama wants to rub elbows with Tina Fey and her squad. When we were invited to preview this year’s digiPlaySpace my son actually passed on a basketball game so he could come along. He has big hoop dreams, so this was clearly something that piqued his interest. If you live in the GTA and have children in the 3-13 age range, The 2016 TIFF Kids International Film Festival and digiPlaySpace are a must-see-must-do! I had no idea all of this family-centered entertainment was right in my back yard. If you’ve never been, here’s the scoop: The TIFF Kids Film Festival will be presenting 139 films from 35 countries. All the screenings and events take place at TIFF Bell Lightbox in Toronto, April 8 to 24, 2016.[…]

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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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When Doctors Make Mistakes

A question in a Facebook group and the memory of that doctor and what she did, or more accurately—did not do—came flooding back. And now I’m raging. Unlike another doctor in our past whose negligence also put our daughter’s life in jeopardy, I never got closure with this doctor. Let me back up. When our daughter was a few months old we knew something was wrong. In addition to her missing key developmental milestones, she stopped feeding. This photo was taken around the time Avery started refusing to nurse. These babies are the same age. Avery is the one in pink. Obviously. She was so tiny in comparison. Little peanut. This picture makes me so sad. But also, it makes me laugh. Hello, Andrew on the right? Breastfeeding was a struggle from day one. Poor suck, tongue tied, persistent thrush—these were the reasons given at the breastfeeding clinic. We eventually switched to bottle feeding hoping it would help. It didn’t. Babies are supposed to grow and thrive. Avery was neither growing nor thriving. She was fading away and we begged for help. Our family doctor who was on our side from the beginning sent us to see a well respected[…]

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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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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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When Your Kid With Special Needs Is A Rock Star!

My friend Kathy Buckworth invited our daughter to participate in a live-to-air segment she was hosting for a local morning show—CHCH Morning Live. At the risk of sounding like a proud stage mother, Avery (and Kathy!) nailed it. I hesitated at first when Kathy asked us to take part. The show is LIVE and in accordance to the old adage, “Never work with kids or animals!” I was aware that this Hallowe’en centered segment could go sideways at the drop of a (witch’s) hat. But, I knew my girl would love it. To be in the spotlight and to feel important, if only for 120 seconds, how could I deny her that? Avery is often overlooked for cool experiences on the assumption that kids with special needs can’t perform or participate safely or cope with the situation at hand. I get it. I do. However parents who don’t have the pleasure of parenting a child with special needs don’t understand how capable kids can actually be if given the chance. A playdate at your house? We can make it happen! She dreams about it. Roller skating party? My girl would love it! Maybe she can’t skate with grace, but I’d[…]

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