Tag - special needs

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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
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When Your Kid With Special Needs Is A Rock Star!
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Here Comes The Bride?
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The Look Of Big Girl Shoes WITHOUT Having To Tie Laces!
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Little Cough, Big Scare
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The Time I Told My Child With Speech Delays To Stop Talking

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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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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Here Comes The Bride?

This girl is a perfect mix of sporty spice and Barbie Girl. She’s equally happy climbing trees and examining bugs or shopping for “bootiful” dresses and experimenting with clip-on earrings and pink nail polish. But lately she’s been decidedly more girly, obsessed with fru-fru frilly and smitten with wedding gowns. (This video snippet is Avery wearing her cousin’s bridesmaid gown…like a boss.) The matrimonial fascination started shortly after my cousin Kelsey announced that she’s getting married. When Avery heard this exciting news she wanted to know who was going to the party and would there be cake and what will her dress look like?! To add to the wedding whimsy we watched a video of my cousin Allison’s wedding. Avery watched intently, admiring the beautiful wedding gown, the flowers, the dancing. She was mesmerized. On the car ride home so told us she would be getting married. “Who are you going to marry?” I asked her. “My brother Bastian,” she answered with absolute certainty. I get why she’d want to marry him—he’s sweet and funny and he makes a mean bowl of mac and cheese. He’s a catch. “You can’t marry your brother,” I told her. “He’s already part of[…]

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The Look Of Big Girl Shoes WITHOUT Having To Tie Laces!

My daughter has always had petite feet (petite everything actually). Even now at the age of nine, she’s sporting size 12-kid shoe. In one way, this is a good thing. As a special kiddo with motor skill delays, tying laces isn’t an option. So, having small feet means there are still lots of shoes to choose from that have Velcro closures. The thing is, she may be little in the tootsies, but she’s a big girl—grade four this year. Fourth Graders tie up their own laces. Avery can’t tie up her own shoes (Yet! We’re working on it!). This is another thing that sets her apart and it frustrates her. So this year she went back to school with BIG GIRL LACE UP SHOES…with a helpful twist. The two pairs Avery got for BTS have the look up lace ups, but can easily be slipped on. 1. Skechers Girl’s Twinkle Toes: Shuffles – Heart N Sole How fun and funky are these sneakers? The high tops provide extra ankle support which helps to keep kids like Avery with weak ankles more stable. Plus, they have a flexible rubber traction outsole which makes them safer for running around on the playground.[…]

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Little Cough, Big Scare

  It started as a simple cough. Then simple turned into complicated. And we took one giant step backwards. “We’ve come so far,” I sobbed to my husband. “It’s unfair,” I cried into his shoulder. It took me years to quiet the fears after our daughter suffered her first and nearly fatal seizure. It took time and hard work to get back on track after that. But, eventually the PTSD faded into fleeting worries, and those worries began to quiet. Mostly. We finally had a taste of what family life is like without the fear. So this summer we ventured far and wide and high. We traveled by plane—up in the air for hours away from the possibility of medical assistance. We enjoyed a cabin high up in the mountains. We frolicked in lakes, camped, and canoed, paddling farther and farther away from access to help if we should need it. But guess what? I wasn’t worried. At all. Life was sweet—the sweetest and most fun it’s ever been for our family. Then the cough.  Our son got it first. Just a dry hacking cough, no other symptoms. A month later, near the very end of our family vacation in[…]

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The Time I Told My Child With Speech Delays To Stop Talking

  Yesterday I posted a story about our daughter’s “profound” speech delay and you left such kind and supportive comments. It means a lot to my husband and I that people care so much. But it also makes me feel like a bit of a dick. Like my sharing/over-sharing about recent trials is an attempt at garnering sympathy or even worse, asking for a pat on the back for stellar parenting. I’m not a stellar parent. I’m just a parent who is crazy about her kids and wants the best for them. Pretty par for the course I’d say. We all want that for our children. We can’t even help it—it’s instinctual. A few people commented on how patient I am. Very lovely to say, but it made me laugh. If only they had seen me this morning… We were running late and I asked Avery to put on her socks. The first time I made eye contact, got her attention by saying her name, and spoke slowly and simply—”Avery, put on your socks.” She didn’t put on her socks. I found her a few minutes later playing with ‘Veterinarian Barbie’ so I asked, “Avery, what did I ask you[…]

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