Tag

obi

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 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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The long overdue review of Stokke Crusi

I’ve had the Stokke Crusi for about a year now, give or take. Which is a long time to take to get around to a review. I discovered the Stokke brand in 2009 when I was preparing for the arrival of the Bubble and googled best stroller for bad back. Up popped the Xplory. I was instantly sold, despite the hefty price tag. Fast forward to April 2013. After a long winter of being stuck inside with obviously not typically developing Obi hiding out from RSV season, I set about getting a new Xplory. I already had an upgraded seat…

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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: Alikes

Have you given thought to the change in how the people see ability? When I was growing up, people who had differences, physical and developmental were kept away. They went through school in different classes. They weren’t playing sports at the same venues or in the same dance classes I took. Every one who was with me was like me, and everyone who was not like me was somewhere else. This magnified the all the ways we were different. When I learned about Obi’s condition and every day since I’ve fretted about all the ways she’ll be different. From her…

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Gabrielle takes Williams Syndrome to the Big Screen

It’s finally being released across the country! Gabrielle, Canada’s Oscar submission for Best Foreign Film opens in Toronto at the Tiff Lightbox and in Ottawa today, and in Vancouver and Winnipeg on the 24th. Back in September I had the pleasure of seeing Gabrielle at the Toronto International Film Festival. Directed by Louise Archambault, the film stars Gabrielle Marion-Rivard, a Quebec actress making her film debut who also happens to have Williams Syndrome. The cast was present for the screening and I had the pleasure of speaking very briefly to Gabrielle and her Mom after the Q&A was finished. She…

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Williams Syndrome Wednesday: Something Nice

Something nice happened when I learned I had a child with Williams Syndrome. I became a nicer person. I became a person who couldn’t afford to be completely self centered (though I am ashamed to say, I found those 40 self-centered years to be pretty fun. And I never really gave any thought to why there was a problem with that). Overnight I came to understand that I would not make it through this process alone – that none of us makes it through this alone. Oh, and that there were people I should have tried harder to be there…

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Williams Syndrome Wednesday: Not Ok Holiday

I took a little blogging holiday over the holidays. There was a lot to process and I couldn’t quite bring myself to form my thoughts and feelings into words. First, I found myself reliving my delivery and NICU experience as we celebrated Obi’s first birthday, only now I was able to apply the Williams Syndrome lens to what happened. This made me feel the need to go back over every painful moment to see if knowing about the WS might somehow change how I felt at the time or the decisions we made. Those were dark days, and reliving them…

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Williams Syndrome Wednesday: The Joy Edition

I wrote an entirely different post. But when I read it, it was well… sad. You see, it was this time last year that things started to go south fast in my pregnancy. Warning signs lead to tests lead to hospital bed rest lead to more failed tests lead to worry about baby’s safety lead to emergency c-section lead to Christmas, New Year’s, my birthday in the NICU lead to home on RSV season house arrest lead to a laser focus on Obi’s delays lead to tests lead to diagnosis lead to more tests, therapies, adjusting to the new normal….

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Williams Syndrome Wednesday: Genes or Just Because?

So there’s this problem we’re having. It’s kind of like when a baby isn’t sleeping through the night… except that by ‘not sleeping through the night’ I mean “baby won’t close her eyes for any reason, like not even to blink between 11pm and 2,3,4,5 am”. The time on the clock is variable but the effect is the same. We live in a zombie like state. We’re 4 weeks from one year of not getting any freakin’ sleep. We have devised a system whereby one parent stays on the main floor with baby and weathers the sleepless storm of tears,…

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