When parents like me talk about our kids with disabilities and intense support needs, we have to be thoughtful. We need to make it quite clear that our kids are much-loved and very awesome human beings. We should never, ever state or imply that any challenges we face as a parent are our children's fault. We need to handle their privacy with delicacy. And we shouldn't accidentally enable disrespect towards children who are already too-frequent magnets for morbid fascination, and pity....more
You can’t really understand it until it happens to you, but there is a lot to think about when you live with a disability. I wouldn’t know if it hadn’t happened to me, but it did, so I am passing my wisdom onto you readers. There are a lot of misconceptions about disabled people, and I’ll be the first to admit I don’t know everything, but I will share with you what I know. I don’t have a disability, but I live with someone who does....more
Michigan parent Kelli Stapleton recently pled guilty to poisoning her autistic teen daughter Issy. According to police reports, Kelly lured Issy into a van, "drugged her, lit the grills and left the van to get more charcoal while her sleeping daughter breathed in poisonous carbon monoxide fumes." Kelli and Issy both survived the attempted murder-suicide....more
This is a topic I’ve been reflecting on for a long time. I’ve read many articles and posts on both sides of the argument. I’ve read posts from adults with spina bifida, and parents of children with spina bifida, who say that spina bifida doesn’t define them.
I’ve also seen the other side of the coin, from parents who say that, indeed, spina bifida defines their children.
My day was mixed. I got up early to work on an analysis of our city's new coordinated entry system for people who are homeless. I am at home with data, tallying things in new directions, finding patterns hidden from the less patient. This is what I'm good at - translating the little picture to the big picture - so I was happy to have this be my day. The tallying and charting. Nothing better....more
So far I was keeping all the anger to myself, but it is finally time to speak up about how the VA is treating my man. M served the US Army for 18 years, went to Iraq 5 times. Got injured, suffers from PTSD, has a messed up back, bad rash caused by the stuff he was working with, and several other medical conditions. ...more
There's been something weighing on my mind that's been sitting there for a while. It has to do with people spouting well-meaning platitudes that unfortunately come across as being condescending, hurtful, ignorant or even just cruel.
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