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special needs parenting

Parenting, special needs parenting, Williams Syndrome

Williams Syndrome Wednesday: 1 Year Adjusted

Dear Obi, One year ago today was your due date. You were born almost 6 weeks early, and despite what everyone said at the time, you haven’t ‘all but caught up’ by your Adjusted Birthday. You’ve checked all the little boxes for 8 month milestones and have, just in the last couple of days, finally checked off the first ones for 9 months. You’ve now clapped and banged objects together. You reached your hands up to be picked up this week too. Although they are not on the list, last week you gave me my first official hug, and today…

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Williams Syndrome Wednesday: Some things about having a baby with a rare genentic syndrome…

…that you maybe haven’t given much thought about. This past week we had the 1 year anniversary of Obi’s homecoming after 25 days in the NICU. We had no idea the journey that lay ahead. Realizing that Obi was not coming along like a typical baby, identifying possible causes and bringing them to her doc’s attention, wading through genetic testing, learning her diagnosis and diving into the steep learning that comes with a complex syndrome like Williams – what a year! I was inspired by this post today on Cheering on Charlie to share some of the thoughts and experiences…

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Williams Syndrome Wednesday: We get it wrong too

I have a confession to make. I seem to have a large foot stuffed in my mouth over and over again. I keep saying the wrong thing -particularly to one parent who has an older boy with significant physical disabilities and a second, a typical child Obi’s age. See, even that, is that the right way to say that? The most recent foot-in-mouth incident arose when I was piping up in a conversation between said woman, another woman with a boy about Obi’s age who has similar developmental delays and myself. The woman with the boy close to Obi’s age…

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Update: We Did Good (Random Act of Kindness)

So a week ago today I posted here about a Random Act Of Kindness. I urged readers here and on Facebook to join me in voting for a photo in the Virginia State Parks First Hikes contest so the family could win a 1-week stay in the park of their choice. I found a blog post on the Love that Max Link-UP from the blog Cheering On Charlie about the photo contest she’d entered. When I read this “At first, I wasn’t sure I wanted to enter the contest. Quite honestly, I have become afraid to hope for things.” I…

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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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Here, of all places, watch your mouth.

That’s what I felt to today while at developmental play group. Every week Obi and I participate in a play group that integrates typical kids with those who are experiencing developmental delays. Some are preemies who are just a little behind. Others, like Obi have a diagnosis. And the rest are just typical kids who come to take advantage of the program which includes free play, social snack time, gym time and music all in one fab morning a week. The group takes place in a specially designed room for the 0-2 set in a building that houses an integrated…

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