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Disability Parenting

Parenting, special needs parenting, Williams Syndrome

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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Parenting, special needs parenting, Williams Syndrome

Contradictions 

Three years ago, Shane headed off to his new school – for first day of Montessori. He walked the 1.2km to the school, was mostly potty trained and was already fluent in sarcasm. Alma is the same age today as he was then. Tomorrow he embarks on a new journey at a new school. Once we drop him off, Alma will start the new year at her 2.5h per day reverse integrated special needs preschool. We have a walker prepared for her and her TPSL block starts right off the bat. She’s been accepted into Physio at Holland Bloorview so…

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Parenting, special needs parenting

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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Williams Syndrome Wednesday: #winparenting

Williams Syndrome Wednesday: #winparenting One of the little secrets of parenting that no one likes to talk about is that we all want to win. I know, I know, parenting is not a competition. But it kind of is. It’s a competition with yourself to have your kids turn out in the way that you believe is best for them. I’m not talking about making them something they’re not. (Though sadly, some people see it this way ). I mean having kids choose to play a sport you played, or go to your alma mater or love reading as much…

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Williams Syndrome Wednesday: The Long Pause

It’s begun. The long pause after people say Allie is adorable and ask how old she is. She is small for her age, so I suppose she could be mistaken for her developmental age. People are really thrown when their 10 or 12 or 14 month old is the same size and further along. They get uncomfortable. They’re not sure what to say. There’s a long, long pause before then say again, just how cute she is. Sometimes I let them off the hook and tell them about WS and how it affects her. And sometimes I just don’t feel…

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special needs parenting, Williams Syndrome

Coulda beans are the cruelest legume

There are quiet little moments when they’re small and still. Tiny little specs in the mosaic of a full and complex life. Work, family, whatever else you spend your time on. Then, from nowhere, they pop up 3 sizes, 3000 sizes and suddenly they take over. All you see, all you do. Everywhere you look, damned coulda beans. It’s not like you put them in a pot to soak overnight. Nope, they sprout up all on their own. This week, the end of ‘kidergarten’ (montessori casa) for the boy and the impending school switch to grade one brought the beans…

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Williams Syndrome Wednesday: R you kidding?

The R-Word. It’s a hotly debated topic. I know right? What’s the debate? It’s not a nice word. It makes a whole class of people feel bad. It’s used by bullies to make perfectly normal people feel less than. But amazingly, just about every time I tell someone they shouldn’t use the R word after they r-bomb it onto a conversation with me or it appears as someone’s post on my Facebook newsfeed, I get a whole host of excuses. I’ve heard “yes, I really need to stop saying that because now my kids are saying it”. I’ve heard “I’m…

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