Category - Special Needs

1
A Bittersweet Anniversary and Post Traumatic Stress
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Something’s Cookin’
3
The R-Word
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Using Sign Language To Support Speech In Kids With Special Needs
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Medicine Cosy
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Merry Frantic Christmas
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Clean Up In Aisle 5—Turning A Bad Day Around
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Words…
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How Confronting My Child’s Doctor Brought Me Peace
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The Beginning—This Is Not The Life We Ordered

A Bittersweet Anniversary and Post Traumatic Stress

  This story was originally published in 2010. Avery continues to do well on her anti-seizure meds and life is good. 🙂 It was an ordinary day. If you consider 40 degrees Celsius in May normal. Avery and I dropped big brother at school and went through our day like any other. It was exactly one year since her first seizure—a severe and nearly fatal episode. I never seen a war, but yet I have Soldiers Heart nonetheless. At least that’s what they used to call it. Today we know it as Post Traumatic Stress Disorder. PTSD usually develops as a result of a “terribly frightening, highly unsafe or life-threatening experience.” It doesn’t make a difference whose life was threatened – yours or the life of someone you love. People who experience post traumatic stress tend to avoid places, people, or things that remind them of the event. But what happens when you live WITH the person who reminds you of the trauma IN the place where it happened? I tell you what happens; you avoid thinking about that event, ever. If you find yourself feeling any emotions related to said event, you crack a joke, call a friend or[…]

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Something’s Cookin’

Life with kids can get messy. I’ve had to curb my neat freak ways and let the blocks (and Lego pieces and dolls and picture books) fall where they may.  My kitchen these days looks like a toy store exploded and honestly, I’m ok with it.  As long as the bulk of it stays off the floor so I don’t trip while carrying a pot a boiling spaghetti water, I’m good. We have a “choice board” posted in the kitchen. This is where Avery’s activities are displayed for the day. This way she knows what to expect. It also helps to build language skills and provides her with choices. There’s rarely a day when she doesn’t select “kitchen play” as one of her free choice activities. Here’s the thing, kids learn by playing. Imaginations come to life in the kitchen and all children benefit from role playing and imitating.  Children, like Avery, who have speech delays benefit even more. We set up a play kitchen IN our kitchen.  It’s fully stocked with plastic dishes, utensils, pots and pans and plastic food of every description. When I’m in the “big” kitchen preparing a meal..what? I do so cook!…Avery is often right[…]

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The R-Word

  What’s in a word? Letters of course. But there’s more. A word has the power to evoke emotion; beautiful or ugly, inspirational or devastating. In the eighties “gay” was a common descriptor. As in, “Oh my god, those jelly shoes look totally gay with those parachute pants.” A few decades later, while shopping with a friend I said, “This song is so gay.” To which she replied, “Really? It’s homosexual is it?” She worked in an industry populated by gay men and pointed out that using gay as a synonym for stupid or odd was offensive. Prior to her bluntly putting it into context like that, the concept had no relevance for me. I didn’t have any gay friends at the time and wielded this word with complete disregard for the feelings of others. Unintentionally, but ignorantly just the same. Chances are if you were a teen in the eighties or nineties you also threw around such phrases as, “I can’t believe how retarded that movie was.” Or “I look like a retard with this perm.” I was guilty of using it until I suddenly became faced with the reality of the word. I have a sense of humour[…]

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Using Sign Language To Support Speech In Kids With Special Needs

“It’s Signing Time With Alex and Leah!” This is the refrain that goes through my head all day, every day. Avery loves this show more than any other. Signing Time teaches sign language in a simple but engaging way. We signed with DS from the time he was a baby. He picked it up right away and was soon signing, “More cookie please!” before he could speak. It was fun and novel, but soon he began talking a blue streak and left the signing behind. Then Avery came along. When she was first diagnosed with a chromosomal abnormality doctors told us she would likely never be verbal. We had already been signing with her for “fun” but continued to sign out of necessity. Her signs came slowly but steadily. As she grew she was able to easily communicate her needs through sign. Eventually she had more signs than her average peers had words. Her vocabulary was extensive and impressive. I can only imagine her frustration level without sign language. We were confident in what we were doing but others questioned our choice to sign with Avery. “Why would she even try to speak if she can just sign?” I explained[…]

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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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Merry Frantic Christmas

With the joy of the season, comes the frantic, hectic hell that is life for women everywhere this time of year. That doesn’t mean men don’t feel stressed during the holidays. Oh wait, yes it means exactly that, since Christmas is a WOMAN’S burden. “Burden” isn’t a very festive term I know. My husband would be more than happy to do anything I asked of him, but due to my sick need to control everything, the man is rarely asked to lift a finger. This black hole of shopping, list making, cooking, cleaning and wrapping despair, was dug by yours truly. So I need to shut up, suck it up and get on with it because… …the holidays are jam packed with “memory moments” and I don’t want to miss any of them. It’s cliché and obvious, but these times go by in a blink of an eye. Our children won’t remember if the boughs on the banister were perfectly hung or if the napkin rings at Christmas dinner all matched. They WILL remember dressing up like elves in the basement, skating on the backyard rink and putting on a “Christmas Musical Extravaganza” in the living room. This is what[…]

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Clean Up In Aisle 5—Turning A Bad Day Around

Today was just one of those days where you just feel like you’re going bananas. The kiddo getting up at 4:45 a.m. pretty much set the tone. We finally fell back to sleep, only to OVER-sleep and have to do the mad dash to get to school in time. And for some reason my hair today is so flat it looks spray painted on. I’m bloated, and cranky and feeling frumpy AF. Driving home in the rain post school drop off, I pulled up beside a car at a stop sign. I glanced over to see a man clinging to the steering wheel, crying. It startled me. What horrible event occurred in his life to cause him such grief? I’ve been thinking about him all day. I can’t stop.  After school I dragged myself out to buy a few groceries. I had a tired little kid with me so about two minutes in she started begging to ride in the cart. So I heaved her in. Thirty seconds later, she wanted out. So I hauled her back out. She was completely out of sorts so I caved and bought a bag of goldfish crackers for her to nibble while we shopped.[…]

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Words…

The letter M isn’t very commanding on its own. An E flying solo has very little influence. But when united in a word, they become powerful. I’m aware that I talk more than the average person and I don’t even say half the things I’m thinking at any given moment. I suppose this is why I enjoy blogging–it’s like a shunt, releasing the pressure of the words in my head. Words are beautiful when crafted by someone with a kind heart. Words can soothe when spoken by a gentle soul. But, words wielded by the ignorant and tactless can leave behind a painful mark. Last week my daughter happily drew lines on a chalkboard in our doctor’s waiting room. A woman sitting beside me asked how old my girl is. When I told her, she said, “Awfully small for three isn’t she?” The response in my head was, “Well you’re awfully stupid for 60!” What I actually said was, “Yup. She’s our little girl.” As my daughter drew, she and I communicated using signs. The woman leaned over and asked, “Does she talk?” I explained that she has a speech delay, but is a proficient signer. This woman then told[…]

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How Confronting My Child’s Doctor Brought Me Peace

Since our daughter was little, we’ve worked with cardiologists, neurologists, therapists, orthotists, geneticists, pharmacists, speech pathologists—so many “ists.”. There was a time when I followed a specialist’s advice without question. They were the professional—the expert. Who was I to question them? That was then. Now I question everything. I research every word. I seek second and third opinions. I don’t care about the glares. I don’t care if I’m disliked. I do care about my children. They are my priority. Last week my husband took the kids to his parent’s while I hosted a party at our house. At 11:30 p.m. he phoned to say an ambulance was coming to take Avery to the hospital. She was having a seizure that wouldn’t stop. I met them in the ER. The seizure eventually stopped on its own, without medication this time. They eventually sent us home and told us to follow up with our neurologist. The following afternoon, I put Avery down for her nap. Thanks to our generous family, we now had a video surveillance camera in her room. I could see her lying in her crib on her side, staring, not blinking. I ran to her room as her eyes began repeatedly[…]

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The Beginning—This Is Not The Life We Ordered

My husband gave me a tacky beer cozy—you know those foamy cups that insulate your bottle? “This is not the life I ordered!” was written across it in neon letters. It was a silly gag gift for an occasion I can no longer recall. When our daughter was diagnosed with the genetic disorder that would change all of our lives, I dragged out the beer cozy from a box in the basement and announced that I would be using it to hold all future beverages.  The Beginning: When our daughter was four months old we had concerns. This baby, our second child, wasn’t gaining weight, she refused to nurse or drink from a bottle, and she wasn’t achieving the milestones associated with her age. By six months we were worried. By seven months we were frantic. Our family doctor (the only medical professional who actually listened to us), was at a loss. She ordered the necessary genetic testing, and in the meantime referred us to a pediatrician who I took Avery to see several times. On the last visit, near tears, I begged him to take our concerns seriously. My husband and I knew something wasn’t right. His response to my plea for[…]

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