Category - Special Needs

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Separated Siblings: She Waves Goodbye As He Leaves For High School
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PTSD—Always There Under The Surface
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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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Disabilities Are Not “Special Needs”

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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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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