Category - Special Needs

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Gymnastics Gold
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Clinodactyly
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Mum, Mum, Mum, Mum, Mum, Mummy, Ma, Mum…
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I Don’t Care If You Stare
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Online Medical Research: A Blessing And A Curse

Gymnastics Gold

  She did it and she couldn’t be more proud. And I couldn’t be more proud of her. And my niece too. I have been blessed with two strong little girls to love. Strong as in, determined and strong as in they could easily take me down in an arm wrestling competition without breaking a sweat. My niece is a competitive gymnast. An amazing one. My daughter looks up to her and mimics everything she does. From the way she wears her hair to the clothes she chooses, to the sport she dreams of doing one day. In fact, Avery keeps a photo of her cousin leaping across a balance beam on her dresser. “I do that too, right mummy?” she’ll say as she points to the picture. A few weeks ago when we were visiting my niece and family, Avery got her chance. She wore a leo that her cousin gave her under her clothes all day, waiting excitedly for 3:30 when we would be heading the the gym. Avery sat in the viewing room and watched as her cousin and her teammates finished their practice. Four hours a day, four days a week they train. I sat with[…]

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Clinodactyly

Our son is fully aware that his little sister is different. He knows about her chromosomal disorder and her cognitive and medical challenges. He understands the implications of the R-Word and he’s aware of the range of physical disabilities that exist for so many people. He has been aptly schooled. We’ve shared Avery’s diagnosis and prognosis with him little by little. It’s like sex education that way — you want to provide enough information to prepare your child for what lies ahead, but you don’t want to bombard them with too much, too soon. He is basically up to speed when it comes to his sibling’s cognitive and physical challenges, or so we thought. I honestly assumed he already knew about her pinky fingers. Avery has a genetic condition called Clinodactyly.   Clinodactyly is the sideways bending of a finger joint. It is often caused by an abnormally shaped bone within the finger.  The pinky finger is most commonly affected.     This condition is usually heredity, but in our daughter’s case it’s a result of her genetic abnormality. My best friend actually noticed Avery’s “shorter than average” pinky fingers before I did. That’s a story in itself which I’ll share another time. […]

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Mum, Mum, Mum, Mum, Mum, Mummy, Ma, Mum…

  Like a blonde, curly haired broken record, my daughter gets stuck on repeat. Actually, she must repeat in order to learn. Genetic testing has revealed that our child is missing specific genes linked as the cause of mental delays specifically related to memory. Children learn by mimicking and remembering. It takes Avery much longer to commit a concept to memory, so she must repeat. Repeat. Repeat. Repeat. Repeat. She’ll watch the same television show over and over. This includes Max and Ruby. *stabs parental eardrums with pointy stick* She also repeats phrases and songs, the ABCs, names of the people she knows and places she’s been and many, many other things. We understand the importance of her rehearsing these concepts. Strangers do not. It’s somewhat amusing to watch the reactions Avery gets when she says, “Bye man!” a dozen or so times to the same guy at the grocery store. Most people will actually return or at least acknowledge each one. Bless their patient hearts. I try to redirect her though, to spare these busy people the last six or seven farewells. Most of the time these repetitions are necessary. Though sometimes she repeats herself out of habit or because[…]

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I Don’t Care If You Stare

Pretending to be a puppy at the pet food store… The moment I stopped caring so much about how strangers perceive my child, is the moment I was set free. I can’t pinpoint when it happened exactly, but somewhere along the road from resentment to contentment, I rediscovered the joy of parenting my unique child.    I don’t mind a curious glance my way if it’s brought on by my own behaviour. If I pull out some experimental moves on the dance floor and turn over on my ankle and squeal like a pig, (hypothetically of course) an eye-roll in my direction is justified.   When strangers stare disapprovingly at my innocent child however, my mama lion mane stands on end.   Though my daughter appears “normal,” her developmental delays cause some decidedly odd behaviours. Errands are always eventful.    Common grocery store scenario: As she furiously stuffs checkout aisle candy into her pocket, her attention suddenly turns to the man behind us in line. While tugging relentlessly on his sleeve, she announces to all within earshot that he’s her daddy (I never met the guy, I swear!). When she tires of him, she darts behind the counter to give[…]

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Online Medical Research: A Blessing And A Curse

  With so much medical and genetics related information accessible online, many parents regularly turn to the internet to research everything. If you’re the parent of a child with special needs or specific medical issues, it’s crucial to understand as much as possible about current challenges, potential problems, and helpful therapies.   This knowledge is both a blessing and a curse. Our daughter has a chromosomal deletion/duplication disorder. This damaged DNA makes her susceptible to certain diseases. Incredibly, scientists have identified a number of specific faulty genes as the cause of certain diseases. We have a comprehensive list of which of our daughter’s genes are affected and after delving into the online world of genetic gene cards, we’re aware of which diseases may be looming. I don’t have to tell you how frightening this is. It’s like knowing your child will likely be in a horrible car accident in the future, without knowing when or where or how severe, yet you’re powerless to stop it. There’s nothing you can do, but being armed with information and a solid understanding of your child’s diagnosis or prognosis is essential in terms of being able to ask the right questions.  Most doctors do not appreciate Dr.[…]

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