Category - Special Needs

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Close Your Eyes And Make A Wish
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Difficult Conversations With My Child – Part 1
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Filed Under Perspective
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When Christmas Isn’t Exactly Merry…
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A Bittersweet Anniversary and Post Traumatic Stress
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Something’s Cookin’
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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

Close Your Eyes And Make A Wish

Our daughter is nearly five years old and she’s never been to a children’s birthday party. She understands what a party involves. She’s had plenty of exposure to birthday cake, candles, balloons, ripping open birthday wrap, and celebrating. But only ever with family.    In two years of preschool I’ve seen invitations passed around to every girl in the class but mine. Now with her first year of Kindergarten drawing to a close, I assume at least one child in her class has had a birthday party. Maybe I’m wrong. Perhaps every child was born in the summer? This doesn’t directly impact my child. She doesn’t know she’s being excluded. But it impacts me. I may be too sensitive (or so I’ve been told) but I definitely feel the sting of rejection on her behalf. I find myself wanting to shout, “What the hell people?”  Alas, I can’t force people to include her. It’s their choice. So I say nothing.  Though, I’d like to just say this… If there’s a child with a disability in your child’s class, please don’t overlook them. You might assume they can’t go to a party due to mobility or behavioural issues. Maybe you think they pose a[…]

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Difficult Conversations With My Child – Part 1

  I knew it would happen, I just didn’t expect it would be today.   Instead of chatting about his day or having a snack, my boy took his sister right upstairs after school. I could hear him asking her to repeat after him as he named objects around his room. I’ll be very surprised if this child doesn’t end up going into teaching when he grows up.   He suddenly came downstairs, looking frightened, saying he was having “bad feelings about Avery.”   “What if Avery choked?” he asked. “What would we do? I’m scared something bad is going to happen to her.”   He looked so sincerely worried it scared me.   “Why do you think she’ll choke?” I asked him, trying to determine the source of his anxiety.   He said kids at school were talking about choking and Epi-pens. They asked him if Avery had one. This is when he spoke the words I knew would eventually come. The words I wasn’t quite ready to hear.   One of his classmates asked, “What’s wrong with your sister anyway?”   This child wasn’t being cruel, he was merely curious as kids are. Though Avery’s delays aren’t visible[…]

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Filed Under Perspective

  Tonight I came across a file on my computer I’d named “Perspective.” I’d forgotten all about it.  When Avery was first diagnosed, I scoured the internet for hours on end, searching for medical information or the latest genetics research. Occasionally, I’d stumble upon something beautifully personal.  When I did, I’d cut and paste it into my file and visit often to read the words that helped to put our new world into perspective. These are two of my favourites. Welcome To Holland by Emily Perl Kingsley I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this… When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The[…]

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When Christmas Isn’t Exactly Merry…

The holidays are a tiring, stressful, hectic time set smack in the midst of dreary winter. Unless you’re a child filled with wonder, Christmas can become more of a chore than a joy. But as parents we do our best to ensure our kids have a happy and memorable holiday, filled with the excitement we experienced in our own childhoods. Christmas morning at our house this year was filled with amazement and laughter. For the first time, Avery “got” Christmas. She was in awe of each present and her brother was floored by his gifts. It was, dare I say, magical. It wasn’t until Christmas night that mummy unraveled, just a little. Fa la la la la, sob, sob, sob wah. Avery did well sitting at the kids’ table at my in-laws’ and I actually got to eat my entire turkey dinner. Pretty much. Come dessert however, she was overtired, overstimulated and overwhelmed. In lieu of dessert and conversation, Avery and I went home so the rest of the family could visit. Getting her into her car seat was a struggle and a flailing arm made contact with my eye. I *may* have growled slightly. FYI: A sick and tired[…]

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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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