Tag Archives: disability
Durga’s Tool #2.1: Empty space
Even at the dawn of the Durga’s Toolbox series, I so appreciated the value of decluttering that I made it a seminal tool, giving it the #2 spot. When I wrote about it then, it was at the culmination of a … Continue reading
Special needs eclipse
I had a special needs eclipse this morning. One of those moments when the challenges of raising a kiddo who needs a lot of help blocks out all of the light. The details aren’t important, but I can say that … Continue reading
More breakfast table talk
About a year ago I wrote about a brutally and beautifully honest conversation that I had with my daughter about her brother’s developmental disability. A wise friend commented that our conversation would be one of many “periodic check-ins.” She was … Continue reading
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 … Continue reading
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 … Continue reading
Durga’s Tool # 637: Love, even when it’s hard
Another installation in my series of tools that helps me parent with compassion, courage and joy, inspired by the goddess Durga, who has always got my back. Lisa Belkin at the Huffington Post did a wonderful story on me, my … Continue reading
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 … Continue reading
Bushwacking: Four stages of becoming a family leader
Tomorrow morning I’m going to lead a round table discussion for special needs parents on using advocacy skills for systems change, also known as family leadership. If you’ve known me for a while, you realize how ironic this is. A … Continue reading
Answering questions together
Last weekend I travelled to Washington DC to help create a new model for government-funded medical research. As a parent of a child with special needs who spends most of my time thinking about children with special needs, this 150-person … Continue reading
A gift from the messengers
Special needs fill nearly every thought and moment of my life lately. My mind has become a radio station that plays all advocacy with no commercial interruptions. Health care reform and medical home are in heavy rotation, along with the … Continue reading
