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!

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 …

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 …

Asking Stupid Questions, aka Beginner’s Mind

Here’s another in my toolbox series of techniques that inspire me to live with joy, compassion and courage, as inspired by the Hindu goddess Durga  — my nominee for patron saint of special needs parents. When it comes to raising kids with special needs, there are a lot of gatekeepers who get to be on …

Pushing my physical body to its limit

I am not a naturally athletic person. Lest you get the impression from the post’s title that I am one of those people with a vexing bottomless well of physical energy, aptitude or endurance, I must assure you that I am a clutz. I was a good student in my youth. I felt secure and …