Special needs eclipse

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.

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.

Patients are health care workers, too.

I had an interesting experience this past week trying to participate in a health care conversation on line in a Swedish healthcare publication called Dagens medicin. Though some of the comments below are in Swedish, I think you can get the gist of what happened. I sent the following letter to the editors and look …

More breakfast table talk

About a year ago I wrote about a brutally and beautifully honest conversation that I had with my younger child about their brother's developmental disability. A wise friend commented that our conversation would be one of many "periodic check-ins." My friend was right. Not surprisingly, the last few weeks have created a need for more …

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 …

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!

Love, even when it’s hard

Lisa Belkin at the Huffington Post did a wonderful story on me, my family and my Care Map on Friday. So many good things are coming out of it: new friends, new thought partners, new mentors, new opportunities. In some ways, the impact is easiest to capture in the stats: 9,000 visits to the blog, …

Stages of grief and special needs parenting: Is acceptance all there is?

The stages of grief—the emotional progression following a loss made famous by Elizabeth Kubler-Ross—has often been applied to experience of special needs parenting. To those of you who aren’t raising kids with special needs this might seem really weird or just plain morose, ungrateful or unkind. I mean, nobody actually died, right? But although none …

Thanking our village

I just spent the morning dipping Oreos for teachers and helpers, which is apparently now my signature teacher gift. (Can something be "signature" after only two times?) It got me thinking back to last year's post, which is still completely relevant for my frame of mind today.