Over on @parentingforward, @cindybrandt was talking about the way we worry as parents. She said, "Every parent worries. To love is to worry. What if that doesn't have to be true? What if we can learn better coping mechanisms for our anxieties so that we don't exchange them with our children? What if we don't… Continue reading Out from the Clutches of Worry, Fear and Control
When our son died, we were told that around 85% of marriages where they lost a child ended after five years. We were given the same statistics when first one, then two of our children were given autism diagnoses. People stopped mentioning the statistics when I got sick, but we can extrapolate. When first one,… Continue reading 85%
I don't talk a lot about the pain part of my life. I somehow got the idea at a very young age that people don't like to hear about pain - that it upsets them - and that as a result you shouldn't ever talk about it. I also - in general - think that… Continue reading Pain
A simple enough question for a doctor to ask a patient. But it causes me to pause and flip through my memories like I flip through the pages of my grandmother's hundred-year-old cookbook.
Today I want to tell some stories of my own medical trauma, to help those of you who haven't experienced this to start to wrap your head around what medical trauma might look and feel like and how that might impact someone, and to help break the silence for those who have experienced medical trauma as a patient or caregiver.
As humans of the 21st century we have got it into our heads that we can know all the things. That we can predict all the weather.That we can heal all the diseases. That we can guarantee that we will not only have food to eat, but that we can have exactly the right food to eat at this moment whenever we feel like it.
That since we can put people into space and go to the moon and launch rockets that can destroy cities in moments and have a face-to-face conversation with someone 10,000 km away from us that surely we can be certain about what is wrong with us.
Except that sometimes, even today, we can't.
I've thought a lot over the years about why it took so long for us to realize that we were a family on the spectrum, and here are at least a few of those reasons. In our family, autism is the norm. That's true not only in our immediate family, but among a lot of… Continue reading When It Runs In The Family