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special needs parenting

Parenting, Williams Syndrome, williams syndrome wednesday

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 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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Williams Syndrome Wednesday: Heart in my Throat

I did a 5k run this past weekend. I used to run a lot but after hurting my back, I’ve been on a break for about 5 years. I’m one of those few people who actually loves to run. So this summer I laced back up, knowing that running is cheaper than therapy, and a serious help in the butt reduction department. I ramped up my running 13 years ago after my father passed away. Again, using the running is cheaper than therapy approach I put one foot in front of the other for Km after Km, eventually completing a…

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Williams Syndrome Wednesday (Friday Edition): Running Between the Raindrops

Sometimes, when I get asked too many questions or read too many Williams Syndrome sites online, I start feeling overwhelmed by all the ‘what if’s’ and ‘could have’s’ and the unknown. What lies ahead feels like ‘too much’ when confronted with all the possible things that could be an issue as time passes. I find, at these times, I cope by trying to focus on one little baby thing that Obi is doing that seems like a regular baby thing. I listen to a gurgle. I coax a smile. I watch her pass a toy. I try to forget how…

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Williams Syndrome Wednesday: I want to be…

A few weekends ago I attended the national conference for Williams Syndrome and they had a talent show for the individuals with WS one night. There were all kinds of acts, stand up comedy, a family of 3 young children that wrote and performed a song about the loving nature of the WS kid of the family, some “just stand up and sing” acts. All in all, there were some impressive numbers – these kids were real crowd pleasers – but one in particular stood out to me. A young boy, maybe 5 or 6, stood up and sang “I…

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Williams Syndrome Wednesday: Sleep

We are now officially in the thick of the “ongoing sleep problems” often associated with Williams Syndrome. For us, it seems to be manifesting in ‘switched days and nights’ where she will sleep long stretches, sometimes for 4-5 hours, but only during the day. At night she is alert – sometimes 4-5 hours. No idea how to make her switch. I did get great sleep this weekend. I attended the Canadian Association for Williams Syndrome (CAWS) family conference. I got a great deal of information – perhaps too much. And left feeling both understood and overwhelmed. Still, it was worth…

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Williams Syndrome Wednesday: Missing Milestones is Messy

missing milestones Williams Syndrome Wednesday

Missing milestones is a messy business. Obi is behind. This certainly comes as no surprise. She’s a preemie. She has Williams Syndrome. She’s been doing it from the start. Or not doing it, I suppose – whatever ‘it’ is on any given day. But each new milestone not met is another little stab to the heart. I have a few different groups of Mom’s that are part of my regular social circle. Most of their babies were born in and around the same time as mine – or around when she was due, anyway. Some have newer babies. And one…

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Williams Syndrome Wednesday: Well I’m still at the airport

mommydo still at the airport-featured

Last we I mentioned briefly that I have some thoughts on “Welcome to Holland“. Dana Nieder (uncommonfeedback@gmail.com), over at Uncommon Sense talks about it too, in her post Amsterdam International.  Well that’s all well and good, but from someone who is still at the airport, here are my 10 thoughts. I reserve the right to feel differently about this as time passes. 1. I have been to Amsterdam International. As a hub, people leave there all the time to head to other places. It’s a kick ass airport. Schiphol. I won some money in the casino there. I have fond…

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Williams Syndrome Wednesday: Not all news is bad news

Williams Syndrome baby no heart issues

A little update on the little miss. Obi met with cardiology today and she doesn’t have any of the heart trouble often associated with Williams Syndrome. This is outstanding, especially when you consider that heart issues are generally a defining factor in the disorder. I, of course, hope that the lack of cardio involvement will translate to a less severe manifestation of the syndrome but I know the two are not related. Still, a little sunny news goes a long way these days. It’s amazing. When you suddenly find yourself in uncharted territory, the way you see and process the…

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Williams Syndrome Wednesday: Related

Obi is not sleeping well. At least not at night. seems to be related to digestion…or maybe teeth. If it is digestion, I’ve read some WS kids have worsening digestive symptoms at 6 months, so could be WS related. Or, could be typical baby stuff. Who knows? I do know I look at every little thing and wonder if it part of the WS or part of life. EVERY little thing. I’m exhausted already. I hope this part gets easier. melanie

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