Category - Special Needs

1
Will My Daughter Ever Get To Be A Mother?
2
Tears For Cheers—But Not The Happy Kind
3
When Your Child’s Speech Delay Gets Worse
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Goldfish Swim School Oakville
5
Teaching Your Child With A Disability To Ice Skate
6
When People Stare At My Child Who Has Special Needs
7
Separated Siblings: She Waves Goodbye As He Leaves For High School
8
PTSD—Always There Under The Surface
9
I Have A Few Choice Words For That Judgemental Woman
10
When Your Child With A Disability Is Told, “You Can’t Play With Us!”

Will My Daughter Ever Get To Be A Mother?

My daughter will probably never become a mother. The idea guts me. So I try not to think about it. But it’s hard to ignore the facts when your kid is patting your neighbour’s pregnant belly saying, “Dare’s a baby in dare? Awwwww. I can’t wait to see your baby. I’m going to have a baby too.” For weeks since my daughter found out this new baby was on the way, she’s been walking around with her rubber Dora ball tucked up inside her shirt, rubbing her tummy saying, “I’m going to be a mummy! I’m just pretending, but when I’m big I’ll have a baby, right Mummy?”  Knowing how amazing it is to be a mother, the thought of her never having the privilege, stings. I squash those thoughts as soon as they enter my head.  But, the thoughts are harder to ignore when you’re faced with them head on. As my daughter Avery waddled around the kitchen, back arched, smiling wide, telling her big brother that her baby is a girl named Little Avery, my son asked me under his breath, “Mum, CAN she have a baby? Like, do you think she will?” He waited expectantly (pardon the pun) for an answer.[…]

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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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Goldfish Swim School Oakville

We’ve been trying to teach our daughter to swim for years—on our own and through a variety of classes, but success has been elusive.  We were optimistic about an adaptive swim class offered by the city, but once again, progress was minimal. The pool was freezing—like blue lips, could barely make it through the class, frigid. It was also large and loud, with way too many distractions. The instructors tried their best, but aside from one-on-one instruction, there was no real distinction between this “adaptive” program and a regular community swim class.  I was sceptical when I heard about the Goldfish Swim School opening near us. I didn’t believe it would be any different from past swim school experiences.  But, we decided to give it a try and holy sh…allow waters! Avery’s swimming has dramatically improved after only a few months of weekly lessons. She was swimming confidently, and with proper technique, after only four classes!  I’ve since recommended Goldfish Swim School to everyone!! Friends, neighbours, strangers on the internet, random moms in the grocery checkout line. It’s just so exciting to have found a program that is fun, safe and effective. We love it so much that my son is[…]

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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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PTSD—Always There Under The Surface

Adrenaline is nature’s way of keeping us safe in the face of danger. It serves a purpose, but when a traumatic experience causes you to live in a constant state of fight or flight it can wreak havoc on your life. PTSD can wreck you if you let it.  We’ve all experienced that jolt of muscle quivering energy that floods our bodies during scary or stressful situations. Like when the car in front of us stops unexpectedly causing us to slam the brakes. Or when a glass slips from our hands, but we catch it before it smashes. Our hearts race, but we quickly recover and move on.  But sometimes the situation is painfully serious and the recovery time is substantial. Like when your child has a medical emergency—a near fatal seizure or maybe she chokes and stops breathing. I can’t begin to describe how frightening that is. We’ve been in this horrible place a few times over the past decade. We’ve watched helplessly as our youngest lay unconscious, or unable to take a breath.   Our daughter Avery’s near fatal seizures have rendered her lifeless in my arms. I’ve seen her lips turn blue. We’ve watched paramedics bring her back to[…]

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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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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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