I am delightfully busy with New Job, so busy, in fact, that even though it’s part-time I am too tired for anything outside of it. But yay, additional money. It doesn’t help that E’s weird summer of seizures has mostly manifested as — surprise! — poor sleep. Whether that is due to new meds or … More What am I doing, air? Where am I going, star?
In addition to the books I mentioned in my last post, I’ve also been poking around online for articles about other parents like me. I might not agree with every little bit in these links, but there was something in each one that really struck a chord with my experience. Having said that (of course), … More Internet Stuff I’m Reading
Since the beginning of this year, I’ve had the opportunity to see town hall meetings. Most of are about the current healthcare debate. Some start out as on a different topic, like vet benefits, and veer inevitably into healthcare. Some are broadcast or reported online, with video or audio. Clips of others appear on the … More Open Letter to Congress about AHCA/BCRA, healthcare in the U.S., and just what in the hell are you doing there, anyway?
“You know, if you believe things badly enough, you can make them true.” “There’s nothing you could have done differently[.]” Superbabies Don’t Cry This article brought back a lot of memories of my own pregnancy, and how I felt right up to the moment when my OB-GYN came in to tell me that it was all going … More How is Disabled Babby Formed?
This morning I read this over at Love That Max: Group Therapy: Would you let your son with special needs go to a dance with this girl? Short answer: No. Gaaarhg. Long answer? While I AM running a (haphazard) blog and should be writing my own ragey screeds about special needs kids being used oh-so-innocently for … More Cloudy with a Chance of Argh
It’s time for the medical healthcare tidbit roundup! This week I learned that: Every single one of E’s medical accounts requires three phone calls to make sure that they are running it through primary insurance AND secondary insurance. With each new phone call, I verify that they have both numbers. “Yep, we got them!” is the … More Odds and Ends of Life with Disability
Excellent takedown on the whole growth attenuation thing, this one by Ingrid Tischer from the blog Tales from the Crip. (Aside: can I say enough how much I love that blog title? The answer is no!) The Top 10 Reasons Why Medically Stunting the Growth of Children With Severe Disabilities Continues To Be an Ethical and Well-Thought-Out Solution … More Yep, still thinking and talking about it
I’ve been reading a lot since posting yesterday about the NYT Magazine article. These thoughts come from an author/editor on twitter, Kayla Whaley (@PunkinOnWheels). I’ve linked to a Storify of her tweets about the language of the article below: Language, Framing, and Perspective in Reporting on Disability I was initially going to link to individual … More More thoughts about that Growth-Attenuation Therapy article
Big discussions going on with my friends on Twitter and Facebook about this article: Should Parents of Children with Severe Disabilities Be Allowed to Stop Their Growth? I’m just gonna go ahead and drop myself in the NO column right now. No, you shouldn’t screw with your child’s body for what is essentially the sake of … More Thoughts about that Growth-Attenuation Therapy article