Thursday, July 25, 2013

Women who build community, change minds

With Jen Reeves,
Born Just Right (back left), and Julia Roberts, Support for Special Needs (front left), and Christina Shaver (Hopeful Parents).

Today I was part of a BlogHer panel about how our online stories about raising children with special needs can build community and pull disability issues into the mainstream, changing perceptions.

I have "known" Jen and Julia and Christina in the blogosphere for some time, and it was an honour to meet these women, each a powerhouse in her own right.

Jen is an advocate for children with limb difference (I got to meet her lovely kid Jordan last night). She just did a meet-up here in Chicago that drew 45 families, including some out of state, who all have kids with limb anomalies. The message of her blog Born Just Right: We are all okay, just as we are. Jen is from Missouri, but we immediately knew someone in common: Gavin, a little boy featured in a winning photo in Holland Bloorview's Filmpossible 2011 contest. Gavin's mom blogs here: One Little Fin.

Julia's two children have a number of medical conditions and differences: vision disorder, developmental delays, kidney failure, dialysis, kidney transplants, each at the age of 8!, and therapy for the side effects of medical trauma. On top of writing her blog Kidneys and Eyes, Julia, who lives in Georgia, created a community for parent bloggers of children with a variety of special needs. She also speaks to medical students; supports families of children who are newly diagnosed with her children's disorders; shares her story with media; lobbies politicians; and sits on numerous boards.

Christina is a Chicago mom who founded Hopeful Parents in 2009. Her take-away tip this morning was about parent self-care, about how we can only support our kids if we sustain ourselves. One of Christina's sons has a serious mental illness. In addition to creating a forum for parents of children with a variety of special needs to share their stories, Christina works to remove the stigma of mental illness and raise awareness of the needs of children like her son. During a public school strike in Chicago last year, Christina spoke to the media about the impact of the loss of a structured daily routine on her son: a devastating month of hospitalization.


The biggest stumbling block for "healthy" people is ignorance or lack of knowledge on how to respond to people with disabilities. If you can help to enlighten just one person you have accomplished something. Keep going you're helping many

Louise, it was such a pleasure to meet you and speak on that panel with you...

I love that I get the opportunities to learn from other people and many things you said spoke to me. You have a light around you....thank you for sharing it with me.

Thanks Julia! I felt such a connection with you and the other members of the panel. Let's keep in touch!