The conversations we didn't have at BlogHer's Special Needs Mini-Con

I am honored to be a part of the special needs world.  This blog's focus has given me opportunities to help moderate and foster conversations for a number of different special needs events through the years.
originally posted August 6 2014

I have met remarkable people.  I learned so many things.  I'm honored the BlogHer staff has consistently trusted me to help lead and guide conversations through the years.  Heck, a BlogHer conversation helped evolve into a SXSW Interactive panel discussion a couple of years ago.

This year, the staff tried things a little differently.  The last two and a half hours of the conference was focused on specific topics where leaders and attendees were given the chance to guide the conversation.  I helped lead the special needs "Birds of a Feather" room with Shannon Des Roches Rosa and Kristina Chew. We had a vision: A room full of people from all types of different perspectives from the special needs world.  We would start the conversation with a few thoughts on our perspectives, answer questions and after a break, the room would lead the conversation.  I handed out post-it notes to the room (and chocolate) and encouraged the attendees to write down topics they want to talk about.  Of course, when an event is scheduled at the end of a conference, things don't always go as planned.  The room was not full but that wasn't going to stop us from being awesome.  Those who attended were mainly special needs parenting bloggers and there was one service provider to share her perspective.  Our presentations and questions took longer than planned and when we came back from a break, the room decided it would be worth the time spending unstructured time talking instead of going through the topics they had written down.  I'm so glad there were opportunities to make great connections in the room.  But I'm sad we didn't get to dig into a few of the proposed topics.



Topics we didn't touch on include:

What is still missing in the special needs community?
Building community
How to advocate for change in special education
Navigating education (public, private, home school)
Typical sibling?
Conflict at school district level between special education and general education
Idea reform: Better access to appropriate education for all children
Jobs Jobs Jobs Jobs
They're all really good topics.  We could have done an entire conference with these topics.

One big discussion during the mini-conference focused on a blogger who is considering a switch to anonymous posts now that her son (who is low on the autism spectrum) enters mainstream school in the fall.  She doesn't want him branded as "autistic" with every person's initial interaction with her son.  She wants him to be who he is without the labels.  My immediate response was how it SUCKS that families feel the need to hold the general public back from sharing how a child is not neuro-typical.  When honestly, who is "typical" these days? Both of my kids do not fit all categories of a neuro-typical person.  And that makes them bright and challenging and exhausting and awesome.  I can't hide Jordan's physical differences.  We have to face them head-on no matter what.  That's why we started every school year with a book.  Jordan tells me she doesn't need to make a Third Grade Book after she has made an "about me" book for Kindergarten through second grade.  I'm cool with that.  She's pretty sure she's gone to the same school long enough to deal with fewer "what's wrong with your arm" questions.  Wouldn't it be awesome if we could put everything out on the table? The seen and unseen challenges.  Just get it all over and move on.  I don't think there were any decisions made on this topic during the mini-conference.  It's an emotional and challenging decision to write openly versus anonymously.

To be honest, I would have really loved to dig into the topic of what is still missing in the special needs community.  Each person is in a different place as a parent, a care taker and as a member of the special needs community.  I know I'm constantly hoping to gain more perspective from all points of view as I help raise Jordan and Cameron, and continue to help foster the Born Just Right community.  I'm lucky to have met more adults with limb differences in the last month who have offered to share extra perspective on this blog.  But I am always trying to think of ways my community can offer additional perspectives outside the silo of limb differences.  How can we all better connect? What lessons have we learned that can be shared wider and further? I don't have the answers but I certainly hope there are even more opportunities to meet with my tribe and keep the conversations moving.

Thanks to the many women who opened their hearts during the special needs mini-con.  I wish we had days to talk, learn and grow together