Category - Special Needs

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Whispers Behind Her Back
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A Brother Shows His True Colours For His Special Sister
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Kids These Days….
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Taking Back The Word Retarded
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Imagine If We All Approched Life Like Tim?
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I Like My EEGS Sunnyside Up
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What Do You Think Of When You Hear “Like A Girl?”
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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

Whispers Behind Her Back

  You can barely hear them. She can’t hear them at all, and I like it that way. They’re soft and intermittent and I can almost always ignore them. Sometimes I can even silence them with a look or an explanation or sometimes with just a tiny shot of snark. Mostly they’re the whispers of strangers and who cares what they think? She doesn’t notice them and even if she did, she wouldn’t understand them. If she did, she’d probably just smile and reach out her hand because she’s gentle and kind and forgiving like that. Sometimes I also want to reach out my hand. But in a more, “come over here so I can slap your head” kind of way. Though my daughter has many friends, last year she made a new friend and this relationship was special. This little girl had just moved to Canada with her father while her mother remained overseas. Her new friend came over to our house often to play and attend parties and she called Avery on the phone. How excited my little girl was to have the phone ring—for her. Between Avery’s delayed speech and her friend’s broken English, it was the[…]

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A Brother Shows His True Colours For His Special Sister

You know when people comment on a video or a blog post saying, “This brought me to tears” or “This made me bawl”? Sometimes it’s true. But more often it’s merely a sentimental response to an emotional topic. When I watched this video however, I literally sobbed. I cried out loud, which I have to say is both cleansing and bloody exhausting. And now through red swollen eyes I’m attempting to share this amazing tribute by a brother to his sister. This sweet and crazy talented young boy of eleven, the same age as my son, wrote and performed this song (a cover of True Colours by Cindy Lauper) about his sister, eight years old, the same age as my special little girl. Sarah was born with Down Syndrome, but her big brother Matt doesn’t see her as different—he sees her as special in all the best ways. My son loves his sister more than anything. He made a video about her to help explain her differences to his peers at school. I guess this one of the reasons why this story touches me so deeply.  If you watch anything online today, you must watch this video below. It’s simply[…]

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Kids These Days….

Our little girl turned eight last week. Eight, not eighteen, but from her recent behaviour the line is somewhat fuzzy. First we caught her hot tubbing in mixed company. Don’t let the water wings fool you, she’s a wild woman. Later that night we found her elbows deep in coins, playing the slots, drinking (apple juice) like a sailor on leave.   Then we spotted her wandering around Chicago, coffee in hand (she was probably exhausted from a late night of gambling) mixing with the locals and painting the town red.   The next thing we knew, she was on her first date playing coy. Ha! It’s a ruse. She’s such a cheeky little monkey—I’m sure I spotted her playing footsies under the table. Kids these days…   Kidding aside, Avery has grown up so much this year. SO. MUCH. Things we never imagined she’d be able to do, she’s doing like a boss. Running, turning a perfect somersault, swimming, talking a blue streak, traveling—the girl knows how to pack a suitcase and has a wanderlust to rival that of any explorer. As for dating, she really did meet her “boyfriend” in Chicago —a  sweet ‘younger man’ who up until now, we’ve[…]

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Taking Back The Word Retarded

  As the parent of a child with developmental challenges, delays, cognitive disabilities… however you want to label it, I often flip-flop between two perspectives. 1. Wanting to let my fists fly (which is pretty hysterical if you’ve ever seen me try to punch something) on anyone who uses the word retarded. 2. Simply allowing the word to bounce off me and ricochet back at them. People who use the word retard are outing themselves as people I’d rather not know. Their word choice says everything about them and nothing about my child or anyone with special needs. I seem to be juxtaposed between violence and a “so be it” attitude so instead of choosing a perspective, I’m creating a new one. I’m going to take back the R-Word. Others have done it—taken a word used to discriminate and have claimed it as their own. By doing so they’ve taken the wind out of many biggoty sails. My daughter is retarded… Okay wait, I need to ease my way into this because just typing that made me squirm. Those seven letters pack a punch. Retard means delayed or slow. By definition, my daughter is slow. She’s slow to anger. She’s[…]

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I Like My EEGS Sunnyside Up

  We kept our daughter up for most of the night to deprive her of sleep, on purpose. Consider it payback for all the nights she’s kept us awake. In your face, Avery! Mwah hahaha…   Kidding. She was scheduled for an EEG the next morning.   Having her good and exhausted prevents her from having to be sedated (she fell asleep naturally on the exam table within seconds) and it ensures her brain will be disorganized and stressed—perfect conditions for performing an exam to look for the abnormal brain waves associated with seizure activity. The same test last year revealed ‘moderate abnormalities.’ This meant Avery would remain on medication—the seizures were still there, suppressed by the meds, but skulking in the shadows. This year we were hopeful that even if the result wasn’t completely normal, there would at least be some improvement, indicating that Avery is slowly but surely growing out of this condition. No such luck. The results were the same. ‘Moderately abnormal.’ We’ll try again in a year. There’s time, things could still change. And in the meantime we’re fortunate to have found the perfect balance of medications, with no side effects, to suppress the seizures. When[…]

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What Do You Think Of When You Hear “Like A Girl?”

At some stage in life the meaning of the term “like a girl” twists from something incredible into something insulting. When I was asked to spread the word about the #LikeAGirl movement, intended to remove the negative connotation associated with the phrase, I enlisted my son’s help. I planned to share a clip of his feminine impression how a girl might run. However, it seems he’s on the cusp of the aforementioned twist. At eleven he still views males and females through equality coloured glasses. When I asked him to demonstrate a “girl run”, he ran hard and strong. It wasn’t the stereotypical reaction I had banked on. I considered grounding him for ruining his mother’s blog post. 😉 So how do our sweet kids suddenly sour? What dark force clouds their minds thus creating this negative point of view? Oh wait a minute… “You throw like a girl!” “Shoot me if I ever start running like my mother. She runs like a girl.” “He screamed like a girl for the entire ride. It was like riding a roller coaster with Ned Flanders.” All of these gems above? Me. All me. (I made the Ned Flanders crack just last week[…]

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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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