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williams syndrome

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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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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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: We become the parents our children need us to be

I’ve recently been told I’ve really taken to this whole ‘advocacy thing’. Which I suppose is true, but doesn’t really say all that much about me. Other than that I am a parent. And that’s what parents do. I’m quite certain that if you asked all the parents sitting at any given hockey rink at 6 am on any given Saturday, many wouldn’t have pictured themselves freezing their butts off 2-3 mornings a week. Ditto for the dad’s sitting at ballet recitals talking about turnout, mom’s debating the relative strengths and weaknesses of the Ninja who make up Sensei Wu’s…

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Obi’s Film Debut

My friend, the talented director Rob Quartly, was pretty interested in Alma’s story, the lore around Williams Syndrome and her super cute smile. So he created this lovely little film about our family to help spread awareness of Williams Syndrome. Have a look and share with friends. One day, no will have to ask me to explain what Williams Syndrome is. Through films like this, I’ll have already told them. Enjoy! [vimeo 108925607 w=500 h=281] melanie

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Williams Syndrome Wednesday on Thursday: Using my power for good

All the fundraising and workshop planning is going great. The auction closes tonight!!! ** But real life continues. Obi currently has a team of 14 doctors, specialists and therapists and this we added two more, which stung more than I thought it would… And her name came up for a preschool spot today. This specialized pre-school enrolls special needs and some ‘community’ kids (not special needs) and we’re going to check it out in 2 weeks to decide if we want to enroll her or stay on the wait list for another year. Again, another moment of really realizing my…

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Williams Syndrome Wednesday: A shout Out to the Villiage

If you know me at all, you know that I am currently hounding people for silent auction donations and silent auction bids. I am a pain in the ASS. But I’m also committed to raising awareness for little Obi and that commitment requires funds. In this particular case, funds to help cover some of the costs for a 1-day educational day at Sick Kids in Toronto for WS families. A noble effort and a huge ton of work… but I see it like this: When you’re new to the neighbourhood – or in this case, a rare genetic syndrome –…

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Williams Syndrome Wednesday Really Late: Little Heartbreaks

I’ve had 2 rather unexpected moments – both really teary and both out of the blue. Sometimes I forget that I live this new and unexpected life. It’s becoming a normal life. Doesn’t everyone else walk in the door and find they’re forgotten an OT appointment and find the therapist halfway through walking lessons with their babe and her caregiver? Isn’t everyone up late scouring the internet for bouncy chairs for developmentally delayed sensory seekers who like you bounce? Did you not take a moment today to wonder if integrated or specialized SpecEd would better suit your child? I did…

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Williams Syndrome Wednesday: Permission to Let It Be

Sometimes it’s nice to hear someone say “Things are ok as they are.” This week’s dose of chillax came from the special feeding clinic that baby Obi now attends. Feeding has been a huge struggle right from day one. We finally got her eating pureed baby food at about a year. We’ve been trying to increase textures but not having any luck. And do you know what the experts said? Let her eat purees. Thicken them slowly over months and months. Stop pushing her to move ahead faster than she can. It’s ok. You know, it’s not ok for me…

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