I’ve wanted to take some time to talk about the wonderful experience I had during the BlogHer conference. A little more than a week ago, a group of people gathered for three hours to talk about the special needs community and how we’re managing with the help of the incredibly connected world we live in.
Julia Roberts of Support for Special Needs made something wonderful happen. Check out the breakdown of who attended. There were almost 80 people in the room talking about all kinds of different types of special needs… But we all have SO many similarities. We all worry. We all want the best for our children, family members and friends who are in this community. We all go through the emotional strains of living a non-typical life.
By the way, “typical” was a great word I hadn’t used before the conference. Kids who aren’t in the special needs world are “typical.” So when we compare our kids to others you can say something like, “Jordan can climb on a playground set, just not the same way as typical kids.” I love this small but wonderful term… I never felt comfortable using the word “normal” because Jordan is normal. Her arm is not typical. I have NO idea why I hadn’t brought this word into my vocabulary.
Back to the conference. We spoke about the difference between being anonymous or not in the web world as we share our feelings and experiences. I started using my real name on this site a little more than a year ago… I felt it was a bit of a risk since I’ve always used Jordan’s real name here. But I also felt like I wanted to better connect with the special needs community and being the real me would help. I helped moderate the conversation at my table. I was actually amazed by how many of us do write with our names. A number of the parents write using their personal names but anonymous nicknames for their kids. I kind of regret not going in that direction, but Jordan’s name was used before she was even born. We’re in this thing together… And I haven’t felt threatened other than by a creepy group of people who have amputee fetishes on Flickr. (Which is why the majority of my 20,000+ photos are private.)
We talked about the power we have if we worked together to make sure health care and legislation better helped our kids and families live wonderful lives. We discussed how this is stressful. We discussed how we need hugs from time to time and the need to celebrate the tiny things. We talked about how we all have more in common than you may realize. So much in common that Julia Roberts started a hashtag on twitter: #moreincommon
Many fabulous people are sharing thoughts and ideas with that hashtag on Twitter. We’re talking about what makes us similar and how we can support each other beyond the conference. Julia’s wonderful Support for Special Needs site is a wonderful start. I hope my connection to the site can be helpful in any and all ways. I’ve been a member for a long time, but I’ve focused my work and writing on this site. Hopefully I can find a way to team up with her just like I’m currently teamed up with the Lucky Fin Project. We’re here to help each other, support any means that reach out to families and let them know that they can be incredible advocates. If they doubt their strength, we’re here to acknowledge the challenges and be cheerleaders to help them along the way.
I made good friends during this conference. I want to share huge thanks to Julia for her hard work. I’m so glad I got to hear Aurelia Cotta, Robert Rummel-Hudson and Shannon Des Roches Rosa speak on the panel. I’m thrilled I got to spend extended time time talking with Liz Ditz, Jennifer Byde Meyers, and Laura Schumacher. I wish I could have had a chance to talk to Ellen Seidman more and I am so happy I got to seriously dance with Leila. (I had a blast dancing with Jenny earlier in the night!) There were many others who I had a chance to hug and talk with. It really was fantastic.
You can kind of get an idea of the conversation by reading the transcript from the mini-conference. It’s a bit jumbled but you can kind of understand the discussion.
I also want to say my dear friend Kate Canterbury (aka @guavalicious) was a wonderful moderator at the conference. I love her for many reasons, but I really love how she’s honest about living with special needs twins who each have their own different challenges. Her honesty during the conference helped other parents feel okay with the fact that this is hard. And in Kate’s case, an unseen disability is hard when it isn’t something easily explained like with Jordan. A one handed child is easier to see than a child who is developmentally delayed. I appreciate Kate on so many levels… especially with the way she’s able to speak and write about her world as a special needs mom.
Where do we go from here? There are a number of people who attended the mini-conference who want a full conference. I do too. I’ve mentioned it before and wonder what it would take to bring all people who are a part of the special needs world a chance to sit down, share experiences and support each other. I know how to put together small town events but nothing on a national scale, but I’m willing to try to figure it out! Who wants to help?
UPDATE: Here’s a look at a collection of reactions to the conference on the Support for Special Needs site.