Category - disability

1
Let’s Pop The Age 7 to 11 Bad Behaviour Bubble
2
Tears For Cheers—But Not The Happy Kind
3
When Your Child’s Speech Delay Gets Worse
4
Teaching Your Child With A Disability To Ice Skate
5
When People Stare At My Child Who Has Special Needs
6
Separated Siblings: She Waves Goodbye As He Leaves For High School
7
I Have A Few Choice Words For That Judgemental Woman
8
When Your Child With A Disability Is Told, “You Can’t Play With Us!”
9
Epilepsy
10
Disabilities Are Not “Special Needs”

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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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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Epilepsy

Sometimes I forget our daughter has Epilepsy. But only for a second. We’re incredibly lucky her seizures are suppressed by medications, but it’s impossible to forget the traumatic years when they were not.  Avery’s first major seizure happened when she was three and a half. I shared the story of what happened in every painful detail. I’m sharing the link again HERE. Even after all this time, I find it difficult to read. Even though it was nearly eight years ago now, those seizures just before Avery turned five were brutal.  Every year since she has an EEG to assess the seizure activity in her brain. And every year while we wait for the results we hope for the news that there is no seizure activity or that the electrical abnormalities remain unchanged, in equal measure.  It may sound odd to hope for no improvement, but if her brain activity appears normal the neurologist will take her off anticonvulsants. And this could mean more horrifying seizures.  When neurons discharge inappropriately they cause abnormal electrical impulses in the brain. This results in seizure activity which can lead to abnormal motor activity or convulsions, and loss of consciousness, and if not controlled as soon[…]

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Disabilities Are Not “Special Needs”

It’s taken a decade of research into genetics and specific diseases and disabilities for me to gain even a fraction of understanding of my daughter’s syndrome. I still have no idea what I’m doing half the time. And I make plenty of mistakes.  Case in point—until recently I didn’t even realize that the label “special needs” was outdated and unacceptable. I’m immersed in this community, yet I was unaware. And if missed this, maybe you did too? I’m not easily offended. I curse, I make gross jokes. I try not to take what people say too seriously and I try to cut people some slack when they say the wrong thing. We all slip up. Words don’t tell the whole story. Our actions and intentions define who we are.  But, when we are told point-blank that something is offensive, we should pay attention. Isn’t it our responsibility as compassionate citizens to do no harm whenever possible? And seriously, updating our vocabulary costs us nothing. Let’s take the r-word for example. I’ve written about it quite a bit over the years. The word itself is harmless. It means late or delayed. When used appropriately, it should cause no harm. But it does.[…]

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