I thrilled to welcome my good friend Carrie Fannin to HLW3B today! Carrie is the founder of Sensory Planet, an international online social networking site dedicated to Sensory Processing Disorder boasting over 1100+ members, which celebrates its first anniversary this month. Carrie also heads the SPD Foundation’s Parent Connections Group here in my home state of WA, which she has been doing for nearly 10 years!______________________
Connecting with other families who had been through similar experiences was my “Aha!” moment. All of a sudden, I had hundreds of parents available to me who were willing to share ideas, resources and a friendly ear at 3:00 a.m. when I needed it. I believed that if I could help one family avoid the path we had been on that I could make a difference. I had that Scarlett O’Hara moment of shaking my fist at the sky and making a commitment. Sounds pretty dramatic, doesn’t it? Well I didn’t exactly make any proclamation, but I do remember feeling very resolved to make a difference. I’ve learned that it is because I am willing to share my experiences - warts and all - that we have such a large network of families. It isn’t about me saving a family from anything; it’s about connecting with people in a meaningful way. I think that the support we offer achieves that.
How did those experiences inspire you to create Sensory Planet?
In the beginning it stemmed from a desire to pool all of our resources together! I began online support in the fall of 2005 for our local support group in Washington. I was looking for a way to keep our families connected with each other in between our monthly meetings. It was only for families who were raising children with SPD in Washington State. Its success got me thinking one night that if families in Washington found value in an online support group that other states would benefit too. I opened up listservs for every state. At that point I was adding resources, links to websites, and product information to around 60 online groups. And then there was Facebook. By 2009 our efforts were broad but widely scattered. We envisioned Sensory Planet as a place where anyone whose life was affected by SPD could find a supportive, educational and positive environment. On May 25, 2009, we opened our social network to families, educators, physicians and treatment providers.
Sensory Planet has tons of great information and resources – forums, event calendar, and blogs (my fave, of course!), plus much more – tell us what we will find at Sensory Planet that is unexpected.
Good question! I think people are often surprised by how genuinely supportive and hopeful our members are. The parents who participate in our forums bravely share their lives with virtual “strangers”; oftentimes sharing heartbreaking details of their child’s world. The flip side is we also get invited in to celebrate their successes. What I love so much is that the people who are a part of our network embrace each other without reservation regardless of what they share.
Over the last nearly 10 years I know you have heard every question about SPD known to man - or woman. What are your top for SPD parents?
You know what? I have a Top 2 that hasn’t changed in a decade; it is as relevant today as it was when I began this journey. If you are raising a child with SPD you need to know that Help and Hope exist; and the very best way to accomplish that is to connect with support.
Why Help? I truly believe that family resiliency depends on it. It’s hard to measure the relief parents feel the first time somebody says “yep, my child has done that too”. Whether a community has in-person support or not, families need to know that support is available. When I first reached out for support, it was an online listserv. After many sleepless nights poring over internet information, I connected with families that “got it”. Turns out it didn’t matter at all that these parents were thousands of miles away from me – I found a place to learn, share, and vent. It was a powerful experience that I can recall in vivid detail.
What once was limited to online bulletin boards has grown today to support groups that are meeting all over the world. Here at Sensory Planet we endorse two wonderful programs: SPD Parent Connections (http://spdfoundation.net/us.html) and SPD Parent S.H.A.R.E. (http://spdparentshare.com/support/hostindex.html). Of course, if a group is not in your immediate area, online support is readily available at Sensory Planet (www.sensoryplanet.com). Parents can connect with us on Facebook as well (http://www.facebook.com/pages/Sensory-Planet/138430906357).
As for Hope? Sounds simple, but support is like a virtual hug that says “Don’t be so hard on yourself. You are a good parent; and this does get better”. I’m sure it’s why there are so many “real” hugs exchanged at our support group meetings; that’s the message we are dedicated to spreading.
You are on the front lines of SPD family support every day and know firsthand how hard parenting a child with sensory issues is, how do you see the inclusion of Sensory Processing Disorder in the DSM-V changing the lives of SPD families?
Well the short answer for me is that our medical and education systems are “diagnosis-driven” so to speak so I do think it will have a significant impact for families. I hope that I see an elimination of the current need so many of us have been faced with to “maneuver the system”; looking for the right “code” to use for insurance or sidestepping the use of SPD on an IEP or 504 – and instead focusing on the child and their needs. The longer answer will be written as we see how those systems react to its inclusion.
I happen to know that you have been hard at work for months helping to plan the SPD Foundation’s International Symposium here in the Seattle area this November (12-14) – any spoilers for us? What can we expect from it? Where can we find more details?
Right now we are finalizing each speaker’s commitment to the symposium, but very soon there will be more details about the event. We have wonderful local sponsors and nationally recognized speakers. I guess that was more of a teaser, but know this: if you can only attend one conference in 2010, this is it! Details will be posted here: http://spdfoundation.net/symposiumseattle/index.html
I am crazy excited that the symposium is here this year -- to all my readers check that link often and come and see me! To Carrie, thank you so much for taking the time to talk with me here today – it is always a pleasure!
Anytime Hartley -- thanks.
1. You will need to follow this blog (publicly through Google located on the top of the right column)
2. Post an answer to this question, "How did finding support help you?" If you haven't found support yet, now you know where to go! :)
OK, once you have joined and commented, you are officially entered.
The contest will run from Wednesday 5/5/10 to Tuesday 5/11/10 and will end at 10pm PST. The winner will be selected by random drawing, and posted here the next day, 5/12/10. You need to check back to win -- if you do not respond, a new winner will be drawn.
I am a true believer in the value of finding support. I encourage all of you to go join Sensory Planet and find out what everyone is talking about -- you'll be amazed how many conversations are about things you still deal with -- social issues, birthday parties, self-regulation, therapies, and MUCH MORE!