Category - disability

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When People Stare At My Child Who Has Special Needs
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Separated Siblings: She Waves Goodbye As He Leaves For High School
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I Have A Few Choice Words For That Judgemental Woman
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When Your Child With A Disability Is Told, “You Can’t Play With Us!”
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Epilepsy

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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