Tag - advocating for your child

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Even The Best Doctors Make Mistakes
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Beware The Snapping Turtle
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Do You Have A “Special Needs Script?”
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I’m A Parent, No Doubt

Even The Best Doctors Make Mistakes

A random question in a Facebook group brought the memories flooding back. I hadn’t thought that doctor in years, but now I’m remembering her dangerous mistake very clearly.    When our daughter was a few months old we knew something was wrong. In addition to missing developmental milestones, she refused to nurse and she started losing weight. These babies are the same age. Avery is the one in pink, obviously. She was so tiny in comparison.  This picture makes me sad. But it also makes me laugh. Hello, Andrew on the right? Breastfeeding was a struggle from day one. Poor suck, tongue tie, high palette, persistent thrush—these were the reasons given at the breastfeeding clinic. We switched to bottle feeding hoping it would help. It didn’t. Our baby was fading away and we begged doctors for help. Our family doctor who was on our side from the beginning sent us to see a well-respected pediatrician. Without even taking Avery out of her baby carrier to examine her, he dismissed my concerns as dramatic postpartum nonsense and shooed me away.  As an aside… three years later we met again in a hospital emergency room. He was the pediatric doctor on call[…]

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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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I’m A Parent, No Doubt

  Parenthood is filled with anxiety fueled I-don’t-know-what-the-hell-I’m-doing daily doses of doubt.  None of us are truly prepared to be “in charge” of another human being. We’re all just kind of thrown into this  But, when you ARE in charge of another person you need to learn to do just that – take charge.    I have two children – our youngest has special needs. I had a normal pregnancy and birth experience and it wasn’t until our daughter stopped feeding and began to fall off the growth chart that we knew something was wrong.   I took her to several doctors; all of them told me to stop worrying. One paediatrician, who I ran into several years later told me, “Women have been feeding their babies forever. You just need to relax.” That was helpful. He also advised that we just “wait and see.” Seriously? But he was the professional and presumably knew what he was talking about. So I doubted myself — but only for a moment.   Instinct told me to take action. I packed a bag and took my child to Sick Kids Hospital Emergency. We were admitted and spent nearly a month in hospital receiving the care we should have had from the start.     Taking a stand or questioning authority takes me way outside of my[…]

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