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special needs parenting, Williams Syndrome, williams syndrome wednesday

Williams Syndrome Wednesday: 5 lessons from #WSA2016

Williams Syndrome Wednesday Lessons from #WSA2016 - mommydo.com Featured Image

I had the wonderful privilege of attending the WSA Williams Syndrome Convention in Columbus Ohio last week. As the ambassador for Canadian families, I connected with friends made in years’ past and made new friendships with fellow Canadians and with parents and individuals with Williams Syndrome from all over the US. Attending a big gathering of Williams Syndrome families is exceptionally rewarding. The information presented is invaluable, even if it is a little overwhelming. And the tactics, strategies and trial and error shared by other parents give a real, honest, uplifting and sometimes heartbreaking look into the lives of those…

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#WSHappywalk The Happiest Twitter Party Around

mommydo.com | #WSHappyWalk Twitter Party for Williams Syndrome

Yes, I said Happy Party. And yes, #WSHappyWalk is about a rare syndrome called Williams Syndrome. A rare syndrome you’ve likely never heard of, unless you’ve ever spent any time in a room with me, and then you’ve probably heard more than you care to about it. At some point in that conversation you probably thought, “wow, I’m glad that’s not me.” And you likely had to stop yourself from making the pity face. And I get it. Having a child with a rare syndrome that comes with the potential for countless medical challenges – cardio, kidney, gastro, hearing, sight and…

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Williams Syndrome Wednesday: Crafting with Exceptional Kids

Part of my New Years #thive2016 resolution is ensuring the whole family thrives. So over the weekend I thought we should do a typical family activity. We should make a craft. But special needs crafting ideas are hard to come by. Not only do both my kids like to make things, Allie gets to work on some of those “therapy skills” when she’s doing crafts at school. Why not do one at home? I found an easy craft over at The Inspired Home and rounded up all the supplies. This isn’t something we’ve done at home much so I had no idea…

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2016: My Year to Thrive

Just over 3 short years ago, our second child was born. She was born small having suffered in-utero growth restriction and the first of many diagnoses she would receive was “Failure to Thrive”. She wasn’t getting enough nutrition and wasn’t growing as she should. It was heartbreaking. From there, she was developmentally delayed, had hypotonia, was socially delayed, tongue tied, had mild pulmonary aortic stenosis, was found to be missing 28 genes on chromosome 7 consistent with a diagnosis of Williams Syndrome. She had high calcium, poor mouth control, vision issues, hearing issues, digestive issues, sleep issues, suspected neuro issues…

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Five Tips: Buying gifts for littles with exceptional needs

mommydo.com | 5 tips for buying gifts for toddlers with special needs from a Mom of a child with Williams Syndrome

It’s that time of year. Make your list. Check it twice. Except, when one of the kids on your list has a developmental disability or other special needs. Choosing special needs gifts or gifts for kids with disability can seem like a challenge. Here are a few tips. It’s our 3rd Christmas with Allie, and each one has been a bit of a struggle. I don’t really know what she’d like. Certainly no one else knows what she’d like. Shopping for kids with exceptionalities isn’t easy. Every child comes with a unique set of likes and watch outs – many of…

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Mommydo Review: The Honest Company at well.ca and GIVEAWAY

The Honest Company Review I’m very choosy about what I use on the kids, especially since Alma. But, sometimes wading through all the choices can be daunting. I have to admit I clapped my hands and squealed the first time I came across The Honest Company. I greedily read everything about how it started, their mission and what they offered Moms like me, who are looking for new, progressive options their families. I love planet friendly, human friendly, CUTE products with sharp design. Sadly, shipping them to Canada was expensive. Sigh. The Honest Company at Well.ca. When I heard the Honest Company was coming…

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Williams Syndrome Wednesday: Advice for new members of the Special Needs Moms Club

It’s not earth shattering. In fact, it’s probably the same advice you got when you first started dating years ago. And, I wish someone had given it me. Here it is: Hang on to your friends.  Hang on tight. Here’s why: There’s going to be a time when they surround you. They’ll be there for you. They won’t know what to say and will probably say things that they regret or things that make you cringe. They will probably stick their feet in their mouths (Will she ever be normal?). Yikes. But that’s just because they don’t know what to…

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Williams Syndrome Wednesday: 140 Characters CAN Change the World

I recently wrote about the NYT best-selling novel that I stopped reading because the author had used the r-word (retarded) in the book, published this year. I had a big long rant on my own little blog and when I published the post felt very pleased with myself. After a few days I realized I was still mad. It’s like when someone says something that you disagree with and instead of speaking up, you walk away and think about all the things you wish you had said out loud. So I decided to tweet the author and let her know that I…

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Williams Syndrome Wednesday: To the best-selling author who robbed me of the ending

Williams Syndrome Wednesday: To the best-selling author who robbed me of the ending I used to be a big time reader, but these days, I’m often too busy to laze around devouring books like I used to. I have work and family responsibilities including caring and advocating for my daughter who happens to have an intellectual disability. Getting to sit down and read an entire book is a luxury I can rarely afford. Lucky for me, I was recently sent on a business trip. On a plane. Away from home. No inflight movie for me. I was thrilled to be able…

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For the sky

Another park. Another day. mom in park: How old is she? 2.5 mom in park: Wow. Yes she has some delays. mom in park: Oh. Is she walking? No, not yet. Someday. mom in park: Huh. Will she catch up? No, probably not. But I’m sure she’ll surprise us in other ways. mom in park: She is cute… yep. Sigh. Then I snapped this photo and thought about how I see her: flying out in front, her brother smiling behind her. Swing on sweet girl. Aim for the sky. melanie

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