I can’t even capture the intensity of the dark feeling now, but it was there, even though the circumstances seem trivial now. In one flash I saw myself forty years from now tying his shoe laces, wiping his mouth and his bottom, and my mind did a high-speed rewind through all of the thousands of tying and wiping moments I’d have between then and now. Zero to despair and rage in sixty seconds. It was hot and black and tight.
Category Archives: My toolkit
Care Mapping “How-To” Guides Now Available!
Finally! I’ve been promising a “how-to” guide on care mapping for the last few weeks, and it’s finally ready.
Care mapping conversation deepens on Huff Post Live
The HuffPo article by Lisa Belkin, “Gabe’s Care Map,” generated a lot of conversation and interest in creating data-rich, holistic snapshots of just what it takes to raise our kids. I’ve heard from lots of parents who are already making their own. It’s so exciting! Lisa and I continued the conversation on Friday on a …
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Opportunity for advocacy: Did you make a care map?
My care map generated a lot of attention and new friends over the last few days. There’s a media request for follow up from folks who went ahead and made their own. If you did and you’d be willing to share it, please let me know by leaving a comment. Thanks!
A gift from the messengers
Looking at one of the paintings, for one moment I am able get my arms around the fullness of my own parenting experience. The terror and the peace. The peace and the terror. It’s there, in oil on board, just right there in four square feet, inviting me to react, to feel it, to stay with it. So I do.
My Care Map, or the picture that tells a thousand words
About a year ago I was asked to talk to some primary care physicians about what it’s like to raise a child with complex health care needs. I thought long and hard about the right words, but eventually pulled out a bunch of colored markers, sat down at my dining room table, and drew this diagram …
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I get by with a little help from my friends
Researchers at Brigham Young University recently released findings that for people raising young children with disabilities, certain types of social relationships are typically more harmful and others more helpful for parents.
10,000 (or so) Hours of Practice
As I approach my 10th year milestone of parenting a child with special needs, I remembered some research I read years ago about what makes someone an expert. Psychologist Anders Ericsson is well-known for his theory regarding expertise: it doesn’t take innate skill or genius. Just lots and lots of practice. In study after study …
Don’t Google
Back in the day, when my son’s medical symptoms and developmental delays started slowly revealing themselves one by one, I received the following advice from several of his doctors: Don’t start Googling. While this advice may have been given for job security or to prevent a lot of “needless” requests for referrals, I think it was …
A few minutes in the hospital lobby
I arrived a little earlier than expected at our local pediatric hospital last Friday. I have spent plenty of hours there with my son, both inpatient and outpatient, or visiting friends whose children are also patients, providing plenty of opportunities for a lot of suffering. On this day though, I’m here in a more neutral …