Category - disability

1
When Your Child Gets Stuck In A Verbal Loop
2
The Shark Who Made My Daughter Feel Special
3
Introducing Your Child With Special Needs To New Classmates
4
Team Canada (Special Abilities Division) World Cheerleading Champions
5
Let’s Pop The Age 7 to 11 Bad Behaviour Bubble
6
Tears For Cheers—But Not The Happy Kind
7
When Your Child’s Speech Delay Gets Worse
8
Teaching Your Child With A Disability To Ice Skate
9
When People Stare At My Child Who Has Special Needs
10
Separated Siblings: She Waves Goodbye As He Leaves For High School

When Your Child Gets Stuck In A Verbal Loop

I’m a pretty easygoing parent. I don’t yell. I almost never yell. I prefer slow smouldering jaw clenched whispered threats. They effectively scare both my kids and my husband. Fortunately, I don’t need to pull out the eye daggers often.  I’m pretty patient—especially when it comes to dealing with my daughter’s idiosyncrasies. If I feel annoyance creeping in I simply remind myself that she’s trying her best and whatever she’s doing, it isn’t intentional.  Like, she’s a very noisy eater. As a card carrying Misophonia sufferer, her lip smacking doesn’t bother me because I know she can’t help it. But God help my husband if he slurps a drink or smacks his lips. That’s a swift kick to the groin right there. My daughter asks a lot of questions and I try to answer every one. She tells endless knock-knock jokes and I always ask who’s there.  It can take a long time for her to complete a sentence. I patiently wait it out. Putting on her shoes or zipping up her coat can take ages. I wait without complaint, even if we’re late. Eating her dinner can take hours and I rarely lose it. But the one thing I struggle[…]

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The Shark Who Made My Daughter Feel Special

When my daughter joined a special abilities cheerleading team last year, I went online to learn more about cheer in general. My search led me to a reality show on Netflix about a Canadian cheerleading team. The show Cheer Squad is a behind-the-scenes look at the world champion Great White Sharks—practices, competitions, wins, losses, and backstories of some of the athletes.  Avery and I started watching together, but I didn’t expect to actually pay attention. I planned to passively watch while scrolling through Facebook.  However, I was quickly drawn into the show and with every episode I was more amazed by the skill and athleticism required in this sport. It’s a combination of dance, gymnastics, tumbling, and intricately choreographed and perfectly synchronized teamwork. The athletes literally hurl each other into the air and it’s hold-your-breath incredible. On the plane to Florida (Avery’s team competed in the World Cheerleading Championships at ESPN Disney this year) Avery spotted one of the athletes from the show. And not just anyone… her favourite cheerleader and absolute idol.  Rebecca Webster from the Great White Sharks was on our flight.  Avery pointed and whispered, “Mummy! Becca…” Avery desperately wanted to say hello so we slipped in behind her in the aisle.[…]

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Introducing Your Child With Special Needs To New Classmates

This school year we decided to introduce our daughter, who has special needs, to new classmates by way of a “Get To Know” Avery video.  It’s normal for kids to be curious about differences. Some kids approach Avery, respectfully. They can see there’s something different about her, but they treat her kindly anyway. Some kids shy away from her. Some ignore her or deliberately shut her out. And sometimes, but thankfully not as often, some kids make fun of her behind her back.  When we talk about Avery’s struggle with speech and explain why it’s difficult for her to form certain sounds, kids understand her challenges better and it makes them more comfortable around her. Also, when they know why she sometimes gets stuck in a repetitive verbal loop, repeating the same thing over and over, they’re less likely to feel frustrated with her because they know it’s not on purpose. She’s trying her best.  When kids are given Avery’s back story, and know that it’s okay to ask questions about Avery, the staring and stand-offish behaviour almost always stops. In fact, when kids understand her challenges, they treat Avery as just one of the gang. Actually, they are quite protective of her. […]

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Team Canada (Special Abilities Division) World Cheerleading Champions

When doctors express concerns about something being “wrong” with your new baby, you can’t believe it. You refuse to believe it. Looking down into your child’s perfect face, all you see is beautiful potential.  But when the chromosome test comes back, and you eventually accept that your child is in fact, imperfect (genetically speaking that is, because she is perfect in every other way), you make plans.  When you are the parent of a child with special needs, there are so many plans that need to be made—for her health, for her education, for her safety, for her development, for her future. All to ensure that despite her disabilities, she will have the chance to be the best version of herself and to, as they say, live her best life.  So we taught her (and ourselves) sign language. We took part in too many therapies and programs to mention. And when she expressed an interest in a sport or activity, we put our fears aside and let her try.  Last fall Avery joined the special abilities cheer team, Team PCT Eternity, at Power Cheer Toronto. Her excitement trumped my hesitation.  Lead by the most incredible team of coaches and volunteers,[…]

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Let’s Pop The Age 7 to 11 Bad Behaviour Bubble

When I taught elementary school I didn’t tolerate rude behaviour from my students. My role as an educator afforded me the right to address disrespectful conduct and hopefully turn it around.  As a parent I don’t accept rude behaviour from my own children. In my role as queen of my house, I shut down snarky comments and eye-rolls, right quick.  But as a person in the world, trying to teach my kids, but also protect them, sometimes I have to tolerate other people’s rude kids.  I want to shake these parents and say, “What are you doing?? Why are you allowing this? Teach your kids to be nice!” The shaking part is probably assault. So I keep my hands to myself and my mouth shut.  But it’s really, really, really, really, really hard.  The other day I drove my son and his friend into Toronto and dropped them off at a theatre to see some You Tuber celeb guy. I don’t know. I don’t understand it. But they, along with the thousands of other fans were excited, so I don’t question it.  My daughter and I had to wait a few hours for them, so we found a shady park in The[…]

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Tears For Cheers—But Not The Happy Kind

My daughter and her special abilities cheerleading team competed performed at our Provincial Cheer Championships this weekend. The kids loved it and they beamed under the spotlight. It was a beautiful moment in time. It was the kind of acceptance and inclusion we parents of kids with disabilities long for. So why did I leave feeling completely gutted?  The coaches and volunteers who have helped shape this team into a world class cheering force, are amazing. I don’t even have the words to express my admiration. Ironic, since I’m a writer and everything. They believe in these incredible kids and are giving them the opportunity to feel the power and pleasure of working together as a team. This is to say, it’s all good. I am very grateful. But, I’m still allowed to feel the feelings, right? And I’m not talking about the rosy ones. These are dark little suckers.  There were tears this weekend. Yes, some were the proverbial “happy tears” that leak from parental pupils that just can’t contain all the pride. But some were ugly. The ones you hide by pretending to blow your nose or try stop from spilling by holding your breath or swallowing hard[…]

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When Your Child’s Speech Delay Gets Worse

We started learning American Sign Language as soon as we found out about our daughter’s genetic disorder—one that is almost always associated with severe speech issues. We relied on a variety of ASL resources, but a favourite (and the most fun) was a PBS show called Signing Time. A friend gave us the DVD set which we watched a hundred times. It’s no longer on television, but you can find it on You Tube.  As Avery started verbally saying words, and eventually longer more complicated sentences, sign language went to the wayside. She was talking with actual, understandable words and it was the sweetest sound.  Two years Avery was formally diagnosed with a profound speech delay. We weren’t surprised, but we were hopeful that with maturity and hard work, her speech would improve. And it did. For a little while.  Since then, her speech has declined even more. Especially in the past few months. I tend to panic when I don’t know why things are happening. And for no apparent reason.  The ideas are there—she knows what she wants to say and she wants to say it, but she struggles to get the words out. Like, really struggles. It’s hard to watch.[…]

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Teaching Your Child With A Disability To Ice Skate

I love my daughter. I enjoy skating. But I don’t love or enjoy skating WITH my daughter. In fact, I’d rather do anything else. However, she’s desperate to learn. I don’t understand her fascination, but I suspect she saw it on a television show and has taken a fancy to it. So we’re trying. And boy is it ever trying. People have said, “It’s not like skating is a vital lifeskill like swimming or something. So why bother?” I know. Skating isn’t an essential skill, but the heart wants what the heart wants… (so even if the heart’s mother can’t stand being cold, whaddayagonnado?) When I saw that Erin Oak Kids was offering a Family Skate program at a rink near us, I signed us up. Us. As in I have to be on the ice with her the whole time. Though there are some wonderful therapists and enthusiastic volunteers on the ice to help, this isn’t lessons. This is a designated block of time, a freezing cold ice block of time if I may, for families with kids with disabilities to have “fun” learning to skate. So. Much. Fun.  Do you hear the negativity here? I do. And I[…]

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When People Stare At My Child Who Has Special Needs

  When strangers stare at my daughter I feel embarrassed, angry, defensive, indignant. I feel all the feelings in no particular order.  Sometimes I make direct eye contact with the starer. Sometimes I call them on it. Sometimes I don’t.  It’s emotional for us when people turn to look at our kids. And when their stares linger, it’s hard to handle.    But I try to remind myself that different draws attention. It’s human nature to be curious. People aren’t generally cruel. They’re just trying to figure it out.  So last week when my son’s gaze fell upon a girl with Down Syndrome and his glance lasted a few seconds too long, and was perceived as a stare, I understand why her mother glared at him.  He looked upset after swim practice. Not only were his eyes stinging from the chlorine, he was feeling the sting of guilt because he’d upset the mother of a girl in his class.  He explained that when he got out of the pool he noticed a girl about Avery’s age standing on the pool deck waiting for her sister. He spotted a school crest on her shirt and he was trying to get a better[…]

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Separated Siblings: She Waves Goodbye As He Leaves For High School

My daughter packed her backpack weeks ago in giddy anticipation of returning to school. She asked me to paint her nails and “do her hair pretty.” She couldn’t be more excited to start grade six.  My son was in denial that summer was ending right up until the end. He gave little thought to his first day of high school outfit. He wasn’t even planning on brushing his hair until I “suggested” it. I pleaded with him to let me take him shopping, but he refused. “Mum, I’ve got enough clothes. I’m fine.” Kind of hard to take him seriously when he’s arguing his point in mismatched socks and pants that are miles too short.  But he’s in high school now. He’s a big boy. In short pants. His pants, his choice I guess. (Mind you, I went to the mall today and bought him a few new things against his will. I can’t have the kid looking like he’s been stuffed into shrunken kahkis all year.) High school… no longer at our local elementary. He’s moved on and this is the first time his little sister will be at school without him.  At first she didn’t make the connection. “What?[…]

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