Category - Special Needs

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Never Say Never—A Story About Very Special Athletes
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Canada’s largest disability exhibition – People in Motion
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Rare Chromosome Disorder Awareness Week
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Skipping To The Beat Of Her Heart
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Tears Sting Even When They’re Not Yours

Never Say Never—A Story About Very Special Athletes

  We were told that it wasn’t likely our daughter would ever walk on her own without some kind of assistance. Doctors made this assumption based on what is known about her faulty DNA. Considering the significant chunk of genetic material missing from Chromosome 3 (3P Deletion Syndrome), this was a fair assumption. But you know what they say when we assume… “it makes an ASS out of U and ME.” So we try to never assume—and more importantly, to never say never.  This spring Avery attended the 27th annual Special Athletes Track & Field Meet in our school district. There were 280 athletes in attendance, plus teachers, support workers and teary eyed parents. Each athlete was allowed to bring along one ambassador to help them. Avery chose her eleven year old brother. Sebastian wanted to be there, but he was scheduled to represent his school at his own track meet. In the end, and on his own, he decided to accompany his sister. He said he wanted to cheer her on. And boy did he ever. We are so grateful to the mother who started this special event 27 years ago and to all of the volunteers who make[…]

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Canada’s largest disability exhibition – People in Motion

  *Post has been updated with info for the 2015 exhibition. This FREE to the public event is designed to educate on the latest and most innovative products and services—from mobility aids to adapted vehicles, rehabilitation services, home healthcare products and more, everything is intended to help enhance independence. We like independence. 🙂 This is a perfect opportunity for us to discover unique services and participate in some fantastic sporting demos and have a chance to meet experts and ask questions. Highlights include:  A Para Archery Range: Find your inner Robin Hood with the Ontario Association of Archers and pick up a bow and give archery a try. Blind Fishing: Join fisherman Laurence Gunther, legally blind since age eight, talk about how he earned his Masters in Environmental Studies and how he created the world’s first fishing boat capable of being operated by the blind.   Appearing Live: Listen to Canadian singer-songwriter Justin Hines perform songs from his album “How We Fly.”   Seminar Stage: Learn at educational seminars featuring speakers from a wide variety of organizations like these.  View full list of 2015 Exhibitors Here Show Dates/Times: May 29-30, 2015 (10 AM to 5 PM) Venue: Exhibition Place, Queen[…]

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Rare Chromosome Disorder Awareness Week

  To say we’re “celebrating” Rare Chromosome Disorder Awareness Week is a bit of a misnomer. However, we are marking it and we are grateful that the first ever RCDAW starts today. Thankfully we found a support in an organization called Chromosome Disorder Outreach  early on. Through their research, education, and efforts to connect families who face similar struggles, we feel much less alone in this unique journey. Individually, chromosome changes like the ones that affect our daughter are still considered rare. But we are now learning that these disorders actually may not be as rare as once believed…

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Skipping To The Beat Of Her Heart

  She rarely walks now. She prefers to skip. Sometimes she even skips in a purple tutu. It took her a long time to learn to walk. Less than two years ago she still wore a helmet on the playground, in case she fell.  Now she’s running, jumping and skipping. And when she skips, her strides are only slightly smaller than the grin on her face. She’s proud of herself and with good reason.  I wish I could take credit for her reaching this physical milestone—one that a child with significant gross motor delays might never achieve. Her EAs at school have been working with her on this for months, and it finally paid off. How amazing are they and how lucky are we? I’m so grateful…I could literally skip. Here are 35 seconds of super skipping stupendousness, LIVE and in technicolour.  Caution: This video skips, but in a good way. 🙂

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Tears Sting Even When They’re Not Yours

This post is about how to ease the blow when your child isn’t invited to the party…   My daughter excitedly joined in to sing a boisterous happy birthday to her friend at school this week. She’s all about the good times. It’s an apple-falling-not-far-from-the-tree sort of thing. She went straight up to the birthday girl (who is a sweetheart) and asked, “It’s your birthday! You having a party?”  Making an awkward situation even more awkward (another apple-tree situation) my daughter continued her line of questioning with, “I can come to your party?!” Talk about putting this poor girl on the spot. She is having a small party—only one child from the class was quietly invited. This is totally cool and completely acceptable. But my party girl just couldn’t understand this and she couldn’t let it go. For the rest of the day she kept bringing it up, stuck in a loop of disappointment. Classmates began stepping in to say gently but firmly, “Avery, you’re not invited. Okay?” On the way home from school my girl burst into tears, explaining about the party and that she couldn’t go sobbing, “Why can’t I go toooooo?” sob-sob-snot-bubble-cry All parents have these dagger[…]

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