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special needs

Parenting, special needs parenting, Williams Syndrome

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: 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: 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 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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Williams Syndrome Wednesday: 1 in 20,000 is the lonliest number

Yeah, I know, I’ve missed a few Wednesdays. I totally had ‘that thing’ happen. The one where you have something on your mind and you really want to say it – but it’s such a big friggin’ downer for you and everyone else that you don’t say it. And then, as it’s all you want to say, you can’t think of anything else to say, so you just say nothing. Yep. I’ve said nothing these past weeks because I don’t want to actually commit these words to print “it’s just not the same”. There, it’s out there now. I have…

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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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