Tag - support

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The Kindest Thing A Friend Ever Said To Me
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Friends Supporting My Kids—It Takes Village
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Filed Under Perspective

The Kindest Thing A Friend Ever Said To Me

  The time she baked me a cake. My best friend is a great listener. To be friends with me this past thirty-seven years, she’d have to be. I can be a bit of a windbag. I’m owning it.   Unlike me who sometimes spits out words without tasting them first, she chooses her words carefully.   She gets why I worry about my special girl. And she knows I’ve struggled to come to terms with the realities of having a child with special needs. She understands how the life I imagined for myself is both exactly and not at all what I had expected.   As we sat in her garden, sipping wine, I told her about a family I met several years ago whose daughter then, reminds me so much of my daughter now.   My Avery was just a toddler when I met this family at an activity group for kids with a variety of special needs. The girl was about nine—the age Avery is now.   She, like Avery, didn’t have any dysmorphic features. At first glance, she appeared pretty typical. It was when she spoke that the disparity between her chronological and developmental age was[…]

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Friends Supporting My Kids—It Takes Village

I wrote a story recently about how one of Avery’s school friends shoed her away on the playground and hurt her little heart in the process. The very next day when we arrived at school, my friend Pat was there with this sweet calendar in hand for Avery to cheer her up. (Avery hung it beside her bed and adds a sticker every night before she goes to sleep to mark the days. Sweet AND educational. Gotta love that.) A few weeks ago my son joined the digital world—he now has his own Facebook account. I know, why? Do our kids really need to be exposed to social media at the tender age of tween? This topic is a post in itself, but the bottom line—he only checks and/or posts once daily and all “friends” must be approved by me. He uses his account to look at family photos and to post links to his stop motion animation creations. At first his stream was quiet. But as family and my friends caught wind of his passion for animation, they started leaving comments and cheers of support. It rocked his world and encouraged him to keep at it. Lucky with a[…]

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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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