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special needs parenting

Life

I put my kids before my heart and thought I was going to die

big blue peaceful sky with fluffy clouds

I put my kids before my heart and thought I was going to die It’s been a year since the day I thought I was going to die. Mother’s Day 2017 started like any other day… well not really. I got tea in bed and handmade gifts and whatnot. There was family brunch and a walk on the beach. Then I put my kids before my heart health, and things went terrbily wrong. We’d been on the same family walk countless times, but this is the only one I remember. The sky was blue, the air was cool, but not…

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With a child with an intellectual disability, money matters.

mommydo.com // Money Matters Smile

Disclosure: I have partnered with YMC and CIBC and have received compensation for this post. All opinions are my own. As a parent of a child with an intellectual disability, I think about money a lot. The same way I think about time, and reading. Yes, money, time and reading. I’m not talking about my money and time (though they worry me too). For my child with an intellectual disability, money, time and reading are the three key factors that can determine whether she is able to have a job, or not. Money and time are abstract concepts. Money represents something…

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Disability Parenting, special needs parenting, Williams Syndrome

Lessons for life prepare kids for a better world

child with Williams syndrome giving a presentation in kidergarten

Lessons for life prepare kids for a better world Kindergarten registration time is here in Ontario. I recently stopped by my daughter’s former special needs pre-school to talk to nervous parents about choosing the right school for their kids. Trying to decide where to have their kids spend the next 8-10 years of their lives is tough. When you child had a disability, it feels impossible to make the call. I feel exceptionally lucky that my daughter has the placement she does. Now in SK, she loves school, has friends, is with her peers and is thriving. It’s been like…

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I put my kids before my heart and thought I was going to die
May 13, 2018
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Finding Balance #TetleyFindYourBalance

mommydo.com | finding balance Tea Talks

Finding balance I think this is the most challenging aspect of my life, and I know I’m not alone. For me, it’s the push and pull of work and kids and keeping the household up and running. And then there is volunteering, the added complications of Alma’s syndrome. My own health, personal growth, our marriage and fun are buried under all the must-do’s. Sadly, I’ve learned you can’t sacrifice yourself for long, without consequence. Working on it I’m definitely working on it. Part of finding balance is trying to get out and do things just for me. It’s true that I don’t…

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I put my kids before my heart and thought I was going to die
May 13, 2018
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Williams Syndrome

#WSHappywalk The Happiest Twitter Party Around

mommydo.com | #WSHappyWalk Twitter Party for Williams Syndrome

Yes, I said Happy Party. And yes, #WSHappyWalk is about a rare syndrome called Williams Syndrome. A rare syndrome you’ve likely never heard of, unless you’ve ever spent any time in a room with me, and then you’ve probably heard more than you care to about it. At some point in that conversation you probably thought, “wow, I’m glad that’s not me.” And you likely had to stop yourself from making the pity face. And I get it. Having a child with a rare syndrome that comes with the potential for countless medical challenges – cardio, kidney, gastro, hearing, sight and…

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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: Speed bumps

It’s amazing how everything can be going along tickety-boo, just racing along  – then wham, you hit something and everything seems to grind to a halt. I’ve taken to calling these moments speed bumps. The term makes me feel like whatever is tripping me or Obi or life up is just a temporary thing. Right now with Obi, it’s feeding. Purées don’t really go down unless she’s sucking them off her soother. Munchies like toast sticks and mum mums are heartily stuffed into the mouth, but any attempt at actually swallowing the thoroughly mushed bits that break off a toast…

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Williams Syndrome Wednesday: A Beautiful Noise

Yesterday, I heard the most beautiful sound. Baby Obi giggled for the first time. A true laugh. Not just one sound, but a series of chuckles one after another. It was magnificent. This social milestone typically occurs between 3-4 months. Obi is 10 months next week. Some milestones are counted by corrected or adjusted age, but I’ve been told the social milestones are often in line with the actual age. Either way, this laugh has been a long time coming. Her gross and fine motor skills are just a little behind the typical kid, but her eating and social milestones…

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Williams Syndrome Wednesday – As Long As She’s Healthy

I overheard someone talking to a pregnant woman the other day and realized something. I have a little confession to make. I’m carrying around a little guilt. And it’s probably nothing, but it’s weighing on my mind. I heard the expectant woman say “the phrase.” I’m willing to bet every pregnant person has said it at some time or another. I said it.  I said “We just want a healthy baby.” And, “I don’t care what we get, as long as it’s healthy”. We all say it – but we don’t really think things will turn out any other way….

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I put my kids before my heart and thought I was going to die
May 13, 2018
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