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special needs parenting

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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Williams Syndrome Wednesday: There may not be a plaque

There may not be a plaque with Allie’s name on it, or a wing of a hospital named after her or all the Williams Syndrome benefactors that are rallying around our fundraiser. There will likely never be enough zeros on our efforts to be considered newsworthy. No hand shaking photos. No press release. There will be a lot of hustle. A lot of late nights and early mornings. A lot of no. And I mean A LOT of no, I can’t help. But there is also yes. An echoing chorus of yes. Each yes turning someone else into a yes,…

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Williams Syndrome Wednesday: The other shoe dropped

Have you seen this shoe? Lost Wednesday between Heath St. and Yonge St and Bloor Station – east-west plaform. Travelled south on Yonge to St. Clair and then south on the Yonge line to Bloor, tranferring to the Danforth line. I have seen the shoe and the jaw dropping bill that came with it. It is one of two lovely shoes, one of which has taken a vacation from my daughter’s foot and landed somewhere in our fair city. She’s a kids, kid’s lose shoes, I get it. On a philosophical level I totally get it. But for me it…

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Williams Syndrome Wednesday: Why research if there’s no cure?

I’m in the midst of doing some research focused fundraising. There have been a number of people who’ve asked me if there’s a cure for Williams Syndrome, or if there will ever be. For Alma, there will be no cure. The chain of 28 genes that is missing from chromosome 7 in her body can’t be replaced or repaired. It is a part of how every system in her body functions. One of the genes missing, the elastin gene, means the various tissues in her body don’t resume their shape after stretching or contracting. If you were to suddenly replace…

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Williams Syndrome Wednesday: A good day ain’t got no rain

A mother raising a child with Williams syndrome, holding her baby in the nicu

Raising a child with Williams syndrome, I’ve learned a lot. Like that Paul Simon knows some things about some things. “She said a good day ain’t got no rain. She said a bad day is when I lie in bed and I think of things that might have been.” So one of my amazing sponsors gave some lovely kids books to The Auction for Alma. And one is called “Someday my Love” and it’s the story of a new mom and all the hopes and dreams she has for this baby girl. Except she missed a few: Like “Someday my…

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