Tag - My special girl

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The Little (Ear) Drummer Girl
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Class Photos
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Sometimes
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The Lies We Tell As Special Needs Moms
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Medicine Cosy

The Little (Ear) Drummer Girl

The trouble with having a child with an astounding threshold for pain is…they have an astounding threshold for pain. Sure, there are times like during vaccinations or minor scrapes and bumps when it comes in handy, but mostly it’s just scary. If my daughter should ever cry out in pain, we know it’s serious.* Take the time she sidled up to the gas fireplace. Though it had been turned off for some time, the glass was still very hot and she burned a loonie sized section of her calf. Even a tiny burn is agony for most, but she didn’t even feel it. A few days ago Avery seemed slightly under the weather — unusually tired and very pale. She had a low grade fever and not much of an appetite, but she didn’t complain. When she woke up the other morning, weeping, I knew something was wrong. She told me her neck hurt (I’m sure she meant her throat), and her tummy, and her ankle too. Who knew “the ankle bone was connected to the ear bone” because an hour later, her ear drum burst. Our doctor confirmed the yellow liquid oozing from her ear was the result of[…]

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Class Photos

A picture may be worth a thousand words, but the words may not always speak the truth.   Case in point, my kids’ class pictures.   My son’s photo depicts him as a social butterfly surrounded by hordes of adoring fans, the consummate centre of attention. In reality, he’s a quiet guy who keeps a small handful of friends close.   My daughter’s picture (below) on the other hand, tells the tale of a child on the perimeter of acceptance. She is the blondie at the end on the first row. A solitary loner at the end of the bench.   In this picture, my daughter may be set apart from her peers, but unlike her brother, she is a social butterfly. She is fully integrated in her classroom. There is no judgement among her peers and she is accepted for who she is.   At first glance, this photo could be unsettling for a family unaware of their child’s scholastic journey.  And not just because of the creepy masks I Photoshopped on my daughter’s classmates due to privacy issues.  Avery adores her teacher, her wonderful EAs and her loving classmates. She is made to feel like a valuable member[…]

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Sometimes

Sometimes when you have too much to say, you end up saying nothing at all. I’ve tried to write many times this week. But instead of writing a word, I clicked “close” every time.   Sometimes when life is too hard, you shut yourself off. You assure everyone around you that everything is fine and you try to believe it.    I feel guilty because others have struggles much harder than my own. I have a child with special needs. So what? So do many, many other parents. Our story is not unique. Avery is healthy and happy and beautiful and I should feel lucky. Or so I have been told. But some days, instead of lucky, I feel frightened, frustrated, angry or sad.   I’ve always had the attitude that everything will be okay. This is our normal and life is good. It’s not perfect, but it’s good. It seems you can only go on for so long fooling yourself into thinking your life isn’t hard.  My life is hard. Avery is funny and loving, but she’s difficult. She doesn’t understand “danger.” She is always at risk and it’s taxing living in a constant state of fight or flight.[…]

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The Lies We Tell As Special Needs Moms

I told a lie about my child. You’re probably expecting a joke or a silly pun right about that. Not today.    I brought my daughter with me to the drugstore to buy eye drops (and shampoo and lip balm and a travel sized hairspray and milk. I need to get this impulse buying thing under control). As I stood in the skin care aisle (I also bought hand cream) Avery picked up various bottles and tubes and chattered away. Then she spontaneously hugged the guy who was stocking shelves next to us. She’s tactile and a hugger without boundaries, obviously.    All the while a young female clerk was casting glances our way. Later at the checkout that same clerk was organizing the magazines. She asked, “How old is she?” An innocent question, but one I’ve come to hate nonetheless. I understand why people ask. ALL THE TIME. They’re just trying to figure Avery out. She looks her age-ish physically, but her social graces and immature speech patterns make her appear much, much younger. “How old is she?” is an attempt to make sense of the disparity.    “How old is she?” asked the clerk. “She’s four,” I answered. […]

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Medicine Cosy

I laughed when I opened the cupboard to dose out Avery’s meds for the day and discovered my husband had put one of the medicine bottles in a beer cosy. He reasoned that if one of us dropped the glass bottle the foamy sleeve would protect it. The irony of the statement inscribed on the cover did not go unnoticed however. I’ve been so consumed by the threat of seizures that I haven’t been focusing on the myriad of medical, genetic and developmental concerns. Now that we’re experiencing a bit of a reprieve ( six weeks seizure free), my attention has returned to researching and planning and of course, worrying. I know it’s futile to worry about the future and things which are out of my control, but with kindergarten looming, it’s hard not to fret. It’s also futile (and stupid) to make comparisons. I know this, but yet I can’t seem to help myself. I took Avery to a play date over the March Break and I was looking forward to a morning with three lovely girlfriends with whom I’d spent my last maternity leave. Our children are the same age and I’ve watched them grow from babies to[…]

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