Shannon Des Roches Rosa

Shannon, Aurelia, Robert, Julia

Just one week ago, I spoke at the BlogHer11 Special Needs Minicon, joining moderator Julia Roberts from Support for Special Needs, speakers Aurelia Cotta and Robert Rummel-Hudson, and a room full of special needs community firebrands. I felt like the room was set alight by the rousing series of talks and full-room conversations about what knits the special needs parenting community together, and how we can best kick ass on our kids’ behalf. TPGA editors Jennifer Byde Myers and Liz Ditz made notable contributions to the discussion, as did TPGA contributors Laura Shumaker and Jen Bush, and TPGA friends Jen Lee Reeves and Ellen Seidman, and so, so many others (thank you!).

You can check out the official transcript to get a sense of the session, but please know that said transcription is somewhat garbled and very much not verbatim. The podcast should be posted soon. 

Until then, I’ve slightly cleaned up the transcript’s version of my own talk, which focused on community building using TPGA as an example, and encouraging other parents to actively demonstrate that we don’t just love our kids, we respect them — and we demand that other respect them, too.


I am really, really excited to be here with this team and with you because honestly, I’m here to suck your brains out. That’s why I’m here. That’s why we created the community called The Thinking Person’s Guide to Autism, because, honestly, I can’t do this by myself. I can’t do this without you.

It can be hard to be Leo’s mom. He’s ten years old and has intense autism. Being his mom is a privilege and it’s a delight, and it’s also really hard sometimes. That’s not to disrespect Leo in any way. I absolutely recognize everything he does to achieve so much, but I can’t do this without your support, without the support of other parents, without this community where we can have conversations, where we can draw upon each others’ strengths.

Most of us have not done this before; as parents, most of us came from outside the special needs community. We have to learn everything from scratch. And after eight years of blogging about Leo and his autism, I came to realize I have learned so much from all of you, from Leo, from the professionals, from the adults who have autism — and I so wish I had known everything I know now at the time Leo was first diagnosed. How amazing would it have been to transplant my current brain into my body in 2003?

What I realized and we discovered is that there was a niche that had not been filled —  in our opinion — in the autism community; what we wanted was an evidence-based hub of perspectives from adults with autism, autistics, veteran parents, new parents, and autism professionals. So we created The Thinking Person’s Guide, standing in a parking lot outside of a coffee house.

The reason we did this is a combination of selfishness and altruism. I think they’re both legitimate perspectives for us to have: We have to fight for ourselves, we have to fight for our kids, but we also need to make sure we are sharing what we know with the community at large. I think it’s also really important to represent our communities as well as we can, to include the voices of as many people as we can. I mean, I have my own blog. It’s my own perspective and fantastic folks come over and chime in. It might help somebody who’s interested in iPads or has a kid like Leo. Otherwise, I’m not sure how much they will learn about from my blog.

So we created the Thinking Person’s Guide to have conversations that include adults with autism and people from different backgrounds and different perspectives. As Robert Rummel-Hudson noted earlier, the special needs community includes all kinds of people — we have our Palins, and we have our Kennedys. Unless we can learn from everyone, we’re not going to be a fully-functional community, we’re not going to be able to demand that people recognize our experiences and respect our kids so we can get them the services and the supports they need. It’s not gonna happen.

A critical part of community building is our policy of respectful disagreement, which actually comes from having been involved with BlogHer for the past few years. (I’m BlogHer’s contributing editor for parenting kids with special needs.) I don’t care if you agree with me. I really don’t. But I need to you respect me as much as I respect you. If we all just have the same opinions, if we all have the same experiences, we’re not going to learn anything. Right? But we have to respect each other. We have to be able to understand that everybody’s experience is valid — and this is not easy. This is very hard.

But if you’re willing to stick to your respectful disagreement guns, then phenomenal learning takes place. This is not to say we haven’t had some knock-down, raging battles on TPGA — we have. But we remain respectful. We have kept doors open for listening and learning. I would say that 95% of these battles resolve really well and we’ve actually had some deepen into valuable relationships, or at least to mutual respect.

Again, it’s not easy. Personally, I’m pretty pissy, just so you know. I’m grumpy. I’m easily irritated but I’m also able to prioritize and I think the community is more valuable than I am [all our editors do]. And as a result we’ve had amazing learning experiences, because we’ve made learning and listening more important than defensiveness. Even though it can be really hard, especially if people attack you personally — it’s hard to just say, really? Especially when they’re talking about your son or your child or your parent or somebody you care about or something that’s a really deep emotional experience, it’s hard. It’s hard to stay cool. This is something that took me a really long time to learn.


But it’s so valuable. These are the communities that deepen into places where people really value their experiences. I can’t tell you how amazing it’s been at The Thinking Person’s Guide to Autism — it’s an experience I never could have anticipated. The kinds of reactions we get to posts both on the blog and on the Facebook community (I would encourage to you check out both); they’re incredible. People come from all over the world. They have these amazing perspectives. Again, many I never considered.

I was especially surprised in terms of our social media community building, because I’m not a big Facebook user. My personal profile is private. It’s probably not surprising that as the parent a child with autism, I have some fairly guarded social space — I can get up and speak to you here because I’m talking at you, not having a conversation with you. And Facebook is very conversational. So I didn’t see the value of Facebook right away.

But we opened TPGA up on Facebook thanks to Jen Myers. (If any of you need any social media advice, especially if you want to pay her, talk to Jen.) She said we had to have a Facebook page for TPGA. And so we did, and now we have thousands and thousands and thousands of hits on every Facebook posting, all these discussions with so many people coming and chiming in — and this community is alive. It’s vibrant. It’s only a year old.

But the primary thing we found is a niche that people hadn’t yet addressed. We didn’t want to reinvent the wheel. Who wants to reinvent the wheel? It’s hard. You need tools. But if you can find your niche, if you can maintain respectful disagreement, if you can moderate, if you can curate, if you can be just absolutely actively engaged while maintaining your standards — you too can make something like this TPGA community we’re so proud of.

It’s so wonderful. It’s such a great place to be; I hope you can all visit it today.