Category - disability

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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
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Disabilities Are Not “Special Needs”
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Small Kids, Big Worries
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Pets Are Family
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All Dressed
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When Your Child Chokes
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Do You Have A “Special Needs Script?”
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Warning: This Post May Put You To Sleep….

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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Small Kids, Big Worries

Anxiety is a pain. Whether we come by it genetically or situationally, it hits all of us at various times in our lives. I’ve written about my struggle with worry—as a parent of a child with a variety of medical issues, I worried about our girl a lot. I looked too far ahead and fretted about the what ifs. I couldn’t stop the catastrophizing.  When you live in the past or in the future, you miss the present, and that’s where all good stuff happens. So I did the cognitive behavioural therapy exercises and it made a world of difference. Don’t get me wrong, I still have moments where I freak the hell out, but I know how to reign it in. This whole being mindful thing is a work in progress.  Adults coping with anxiety is one thing, but what about children with anxiety? Watching your child worry is like being poked in the stomach with a sharp stick.  I’ll unabashedly tell you about my battle with my worry monster, but sharing someone else’s story is offside. But I can say that having a sibling with disabilities can create fear and anxiety for good reason. Watching your sibling choke and[…]

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Pets Are Family

  People say we’re nuts for having so many pets. Three isn’t “so many” if you ask me, but I’m not one to split hairs—even the ones stuck to my black pants. Is life easier without a small herd of animals to take care of? Sure. Is it as rewarding? Not for us. When our daughter was about two and a half and still not walking, one of her physical therapists suggested we find something highly motivating to her to get Avery up off the floor and walking. Avery has always been obsessed with dogs. THIS would be her motivation. My sister-in-law has her own veterinary practice and she found the perfect dog for us—a mutt, part chihuahua, part terrier and part teeny-tiny wolf. He was about three years old, housebroken, quiet, not too big, and a RESCUE DOG in need of a loving home. We would be that home.   Within three months of adopting Roger, our girl was walking; then running after her canine companion. A few years later we adopted a second dog, Maya. We even hosted a dog wedding. No seriously, you can witness the Bow Wow Vows here. It can take people a lifetime to[…]

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All Dressed

She is perfectly able to dress herself in the morning. Well, pretty much. Buttons and zippers can still be a challenge. Yet I can’t seem to stop myself from “helping.”  Since I realize she needs to learn to do things on her own, I’ve been laying out her clothes and allowing her to get dressed on her own, no matter how long it takes (and sometimes it takes forever).   I need to take this a step further by letting actually her choose her own outfits. But it’s a tough one. For me, not her. She loves picking out her clothes. (This is where the control freak in me starts to really squirm.)   Today I was running late so I let Avery put together her own outfit for school. Oh how I wish I had video of her jumping through her doorway out into the hall, arms overhead, legs outstretched in a victorious V-stand, grinning from ear-to-ear exclaiming, “Tah-dah! I dressed!”    Halloween t-shirt, underwear on backwards and inside-out, one long black sock, one short white sock, no pants. She was ready for school.   We have a strict “you must wear pants in public” rule so I suggested she put[…]

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When Your Child Chokes

  Not all parents of children who have a disability of some kind obsess. Admittedly, I do. I struggle to tame the worries that invade my thoughts and I tend to hover over my daughter. (Think helicopter blades whirling furiously over head, bubble wrap dispenser on the ready.) My child has global development delays, speech and gross motor issues, and seizures. Despite her diagnosis she has made incredible progress. For a child who doctors said may never walk or talk, she is doing both — in your face, science. Our girl is no longer a baby. She is active and bold and curious. To deny her independence and the chance to explore would be cruel, so I hold my breath and let her go. Up the stairs by herself; higher on the swings; in the pool, close by, but liberated from her water wings. As it is for any child, loosening their reins allows them to reach further. So despite my racing heart, I’m trying to give her space to grow. My other child, Avery’s big brother, laughs when I remind him to chew his food. To him, grapes are juicy mouthfuls. To me they are ominous orbs of imminent choking. I’m not completely insane though — I stopped cutting[…]

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Do You Have A “Special Needs Script?”

Writing a movie script? Fun!   Writing a script for your child to have on hand for when peers, out of ignorance or curiosity, call his younger sibling a “retard“? Not quite as much fun. But it’s important to arm kids who have a sibling with special needs with the words to thwart such attacks. And what about the parents of children with a disABILITY? Parents like me with soft hearts and thin skin. There was a time when I considered having cards made up to hand to strangers who stared or made unsolicited comments. I thought by having the words written out, I’d be better able to explain without getting emotional. Since then, my skin has thickened an inch or two and with time and experience and I now welcome the opportunity to address them directly, and calmly. Usually. More often than not, people are receptive upon hearing the information when delivered in a respectful manner. And yes, the “respectful” tone employed for such exchanges takes effort. Look out Meryl Streep — the Best Actress award goes to… Addressing adults — check. I seem to have that under control. Minus the time when that crusty awful woman shushed us.[…]

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Warning: This Post May Put You To Sleep….

Twenty-twenty-twenty four hours to go I wanna be sedated.   Nothin’ to do and no where to go-o-oh I wanna be sedated…   To clarify, The Ramones want to be sedated. I do not. At all. In fact, the idea of being sedated seriously freaks me out. I’m not talking about urban legend scenarios where you’re put under at the dentist and wake up with your shirt on backwards. I’m talking about the real fear of being unconscious while somebody else monitors your breathing and heart rate. That’s some kind of scary. The only thing scarier is having to sedate your child. Especially when your child has underlying medical conditions that make anesthesia more risky.  In order to perform an EEG on our daughter last week she needed to be asleep. Not fully knocked out, but soundly asleep. She also needed to be sufficiently sleep deprived to elicit the disorganized brain chaos necessary to reveal any abnormal brain waves lurking about. Our neurologist suggested using Chloral Hydrate the morning of the procedure to sedate. We’ve used this drug before without any problems. However, after doing some research into Long QT Syndrome (a potentially serious heart condition our daughter is being monitored[…]

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