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williams syndrome

Parenting, special needs parenting, Williams Syndrome

Williams Syndrome Wednesday: I’m not special and my brain hurts

I’m tired of reading things like “God only gives special children to special parents” and “she couldn’t have come to better parents”  or best “special needs parents are the bravest/strongest/whateverest”. Pffht. My child is special. ALL children are special, but one of mine needs a little more than most. This has very little to do with the kind of person I am or am not. That being said, I am the kind of person who needs to know things. I’m a why? what next? and when? person. So it comes as no surprise that I struggle a little with the…

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Williams Syndrome Wednesday: Learning to Fly

I find this new role as a ‘special needs’ parent is quite overwhelming at times. Emotions aside, the logistics are complicated. There are appointments to schedule, keep track of and attend, therapies to practice, milestones to work on. There are new tactics to try to overcome issues (like feeding, for us). Then the emotions creep back in. Once all the other stuff is ticked off for the day there are things to worry about. Things to fret over. Things to be mad about. Things to feel like you did poorly today. There are things I didn’t do because I just…

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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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Williams Syndrome Wednesday: Let’s be better

I posted earlier this week about an incident that happened while Obi and I were out in the world. If you missed the post, you can read it here. I had interesting responses but the one that has stuck with me the most was a facebook comment saying “he should be fired”. There was a time when I would have agreed that he should be. But these days I know getting him let go wouldn’t help him in the long run. He’d probably storm home or out with his friends and say that the mom of some “enterdisparagingremarkhere” kid got…

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Williams Syndrome Wednesday: The Unknown

Control. Surrendered. Expectations. Unrealistic. Certainty. Uncertain. Possible. Yes. Impossible. Yes. Probable. Not likely. Likely. Not realistically. It’s the unknown that makes this journey so challenging. It’s a huge spectrum. There’s no knowing where she’ll sit on it. Though she’s caught up on many milestones, there’s no research that supports this will mean she’ll remain on that curve. She could stall at any time and find herself falling behind again. Will learning sign language help? Maybe. Will OT ward off physical delays? Perhaps a little. Will the early, consistent exposure to solids help prevent food issues? Could be. Or not. There’s…

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Williams Syndrome Wednesday: Finding ‘our people’

Mommy groups filled with typical mommies caring for typical babies can feel very isolating. I’ve learned when you’re parenting a child with a developmental delay caused by a genetic issue, it’s really hard to relate. In addition to the day-to-day feeling that you can’t keep up with the conversations about what’s happening with the babies that one-by-one pass yours by, there’s the uncertain future that makes you, and others, uncomfortable. For instance, you often hear, I’m letting my baby XXX (co-sleep, have a pacifier, potty-train when ready, skip tummy time) because no one every goes to university (sleeping in their…

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Williams Syndrome Wednesday: Sit Up Proud

Little Miss sat unsupported for a short time today…maybe 2 min. After spending time with a Mommy group filled with typical children yesterday and having a little boo-hoo over how hard it is to watch all the kiddies moving so quickly through sitting to making moves towards crawling (or already crawling) and now starting to pull themselves up, to say I was delighted was an understatement. Of course the camera was no where to be found and phone battery was dead, but I’ll snap some pics today if she’s interested in a repeat performance. As I go through this journey…

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Williams Syndrome Wednesday: The Who does What’s?

I have been meaning to write a post about steps to take when you first learn about a new diagnosis. I’ve been wading through these deep waters and feel rather hung-out-to-dry when it comes to finding the info you need start helping your little person access the services they need. That’s a long sentence, but not nearly as long as the roundabout route one seems to take when trying to find info about these things. Today for example, I got a call from one place that offers a certain program telling me that going to a paid program at their…

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