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How to Pack for MDA Camp

A guide for parents sending their child to any disability focused sleep-away camp. Sending a child with a disability to overnight camp can seem overwhelming to special needs parents, and maybe not worth the hassle. But sleep away camp has benefits for all kids, especially those with disabilities. That’s why we send Fulton and Teddy…

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Another Hospital Post

Since I’m sitting in the hospital, I feel obligated to write a blog post. One, so I can update everyone who wants to know how Fulton is doing, and two, it gives me something to do between trips to the cafeteria. Not that I’m bored! But, typing out a post is usually easier to do…

Teddy’s Surgery Journal, Part 3

Happy Black Friday! I’m not selling you anything! I just wanted to give what’s probably going to be the last update on Teddy for awhile. Long story short- he’s doing really well, so all the progress now will just be slow and steady with hopefully no surprises. We’ll start where the last post left off…

Teddy’s Surgery Journal, Part 2

I went into this whole thing with less anxiety and worry because, “I’ve been through this before with Fulton! I know what to expect!” And it’s true, I did know what to expect, up to the point where Teddy’s recovery diverged from Fulton’s. The last few days have been humbling for me as Teddy struggles…

Teddy’s Surgery Journal

What I realized as I met with Teddy’s surgeon on Monday, was how little I remembered of the technical details related to Fulton’s spinal fusion. I wish I would’ve taken more notes because as we discussed Tuesday’s game plan I was surprised at what I’d forgotten. (Like the fact that Fulton had a small opening…

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Why You Shouldn’t Say “Special Needs”…

and why I put the term in my title anyway. I know the majority of my readers are not the parents of disabled children, and so you may be wondering what the point of this post is. You’re probably completely unaware that there’s actually a controversy over the use of the term “special needs” in…

SMA Awareness and SMA Pride: What’s the Difference?

It’s Spinal Muscular Atrophy Awareness Month! Or as some are dubbing it, SMA Pride Month! The two titles show the two sides to the SMA community; the adults living with SMA, and the parents of children with SMA. Most of the time, we all get along in our social media groups and at events. But…

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Why I Love My Son’s Feeding Tube

It’s Feeding Tube Awareness Week. When I first heard of it, I didn’t know what kind of awareness I was supposed to spread- is there anyone out there who is afraid of feeding tubes? Are there still people who are ignorant of them? I suppose there must be; I’d never heard of them until 10…

Tiny Tim and the Blind Boy: Why the Types of Stories We Tell About Disabled People Matter

Earlier this week, a new acquaintance, who’d just learned about my background as a special needs parent and my writing on the subject forwarded me an email message he’d received from a friend. He thought maybe I would want to include it on my blog or in my book. He was right. I do want…

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{SQT} Over It

***SIGH*** 1.I know I’m supposed to be a pro with this whole special needs parenting thing, and if you want advice on in-patient hospital stays, I’m your gal! But frankly, I’m just over it right now. Even when you have a routine down and the hospital staff all recognize you, it’s hard. I don’t like…

#hospitallife

Last week as I published my Takes, I was convinced that Teddy had turned a corner, and would be back to normal and hopefully back to school by Monday. And then Friday, the exact oppostie happened. His temperature shot up higher than before and his blood oxygen levels fell dangerously low. Tony and I both…

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‘Accepting the Gift’ in Review

What great weight is lifted off one’s shoulders when a major project finally comes to completion. I spent all of last Sunday walking around and smiling and remarking to Tony, “I’m no longer planning a conference!” Of course on Monday I dove into video editing, and by Wednesday I was making notes for another event,…

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Advice for Parents Whose Children Are Scheduled for Surgery

We are officially six months out from Fulton’s spinal fusion surgery. While we will be sticking with some of the care methods we adopted during his recovery, life, for the most part, has gone back to normal for him and us. It’s a new normal; the rigidness we feel is his body, not an external…