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The Parent Connections Journey: Past, Present and Future
BY Carrie Fannin
SPD-Parent Connections Host, Washington
The moment when you first connect with other families raising a child with Sensory Processing Disorder (SPD) is life-changing. Your perspective changes immediately. You no longer feel you are "the only family" in your family/neighborhood/city struggling to understand your child‘s behavior. Almost immediately, your thinking changes from "isolation" to "community."
That "community" is what SPD-Parent Connections is all about. Here‘s the story.
Past – Our Name!
I remember vividly the day my husband and I were handed a diagnosis of "Dysfunction of Sensory Integration" for our daughter Hayley. I had never heard of it before - and neither had anyone else I knew. It was such a mouthful that I had to write it down on a piece of paper and carry it with me in my wallet so that I could tell people what she had been diagnosed with.
One of the most visible and welcome changes since my involvement began has been in our name. Originally named DSI (for Dysfunction of Sensory Integration) Parent Connections we then became Sensory Integration Dysfunction (SID) Parent Connections. That had its own problem (because SID was so close to SIDS, for Sudden Infant Death Syndrome). So many acronyms, so much confusion!
In 2005, the Foundation began to establish a new "nosology" (which I learned just meant classification scheme) for the condition we parents all knew regardless of what it was called. And finally the problem that our children had a new name: Sensory Processing Disorder (SPD). With that, our parent groups became known as SPD Parent Connections and FINALLY! We had a name I didn‘t have to carry around in my wallet to remember....
The Idea – Parents Helping Parents
Laurie Renke in Londonderry, New Hampshire first visualized a global support network for parents. She founded the original support group network and was literally a "connector," recruiting parents like me as hosts. She then served as the Foundation‘s national parent program coordinator from 2001-2005. A volunteer national committee was formed to provide support within the PC network and to share new ideas about how we could grow.
Another sensational mom, Raena Rawlinson, from Norman, Oklahoma, was our next national coordinator. All the while, Laurie, Michelle Morris in Florida, and I attended national conferences and events to introduce Parent Connections to professionals including occupational therapists, physicians, teachers, and others.
By 2008, the number of groups worldwide had grown to a point where the Foundation needed a dedicated resource in Denver to support our hosts and other parent volunteers. A challenge was issued to SPD-PC to raise enough money to help fund a part-time staff position for a year. The hosts stepped up with enthusiasm, and JoEllen Nikkel soon came on board as the Foundation‘s first in-house dedicated coordinator.
JoEllen now is the primary point of contact for all Parent Connections hosts, helping parents make the big shift from being a "parent of a child with SPD" to someone who connects with other parents and helps them connect with one another. JoEllen is also the mother of two "sensational kids" of her own and is a great resource for non-host parents who come to the Foundation with questions.
Our first national "host conference" was held in Manchester, New Hampshire, in November 2004.
Pictured (back, l to r): Jean Manley and Tina Moyher of New Hampshire, Terri Linehan of Maine and Janet Wright, OTR/L; (front, l to r): Denise McKeon of Pennsylvania, Pam Cardin of Connecticut, author and SPD Foundation board member Carol Kranowitz, Laurie Renke of New Hampshire, and Carrie Fannin of Washington.
Present – Raising Awareness and Funds
One of the very first things created for Parent Connections support groups was a flyer we could use to explain our kids‘ behaviors. For the first time, parents had a handout that showed real-life examples of what SPD "looked like" in non-medical terms they could share with family, friends, and their child‘s school. Over the years, this simple flyer (entitled "Do You Know Me?") has become the trademark of the parent movement in raising awareness of Sensory Processing Disorder.
In the spring of 2005, original artwork was added to the flyer by Melissa Zacherl, a parent volunteer in Pennsylvania. Now, we have a Spanish version, too. Anyone who‘d like a handy, vivid way to tell others about their child‘s sensory issues can download and print either flyer from the Foundation‘s wonderful website Download a Flyer page, where all sorts of helpful downloadable materials are constantly being added. Today, you will find iterations of the foundation‘s "Do You Know Me?" awareness flyer all around the world.
Since JoEllen‘s arrival, SPD-Parent Connections has focused on fundraising in addition to sensory awareness and SPD support. In October 2009, the Foundation sponsored its first-ever international awareness event and fundraiser: SENSORY SHOWTIME, another milestone in SPD-PC history. Parent hosts and other volunteers raised more than $35,000 worldwide to support SPD research, education, and advocacy - more than any other fundraiser has ever brought to the Foundation. Now plans for a 30th anniversary celebration event are in the works for next October. Stay tuned for news!
My Own Journey with SPD Parent Connections
Each year, I hear the inevitable: "Are you going to continue hosting now that Hayley is 15?" (Or 8, 11, 13 - fill in the blank!). Each time I hear that question, I am surprised because hosting is not something I actively think about. My SPD support group has become a part of my life; it isn‘t something that has an expiration date to it.
However, the question does remind me of those early years before we knew anything about Sensory Processing Disorder. Those were lonely years for our family - isolated and sad years as we struggled to find somebody to LISTEN and help us.
But the question also reminds me of my daughter, who teaches me every day about courage and determination. This child is the bravest person I have ever known in my life. She has struggled with an out-of-sync body, suffered through tough times at school that no child should have to endure, and at 12 stood up in front of more than 400 people at a fundraiser to share her story. She and I both believe that her story is worth sharing with every family who is walking down a similar road because it is a story of HOPE and SUCCESS.
I‘m willing to share "our story" for as long as people want to hear it, and that includes remaining involved in SPD-Parent Connections. I share the Foundation‘s ongoing commitment to help families around the globe connect with one another.
The Future – Join us!
Do you have a child with Sensory Processing Disorder? Please consider joining the more than 80 other parents and professionals who host SPD-Parent Connections groups worldwide. Working together, we can usher in a new era of acceptance and understanding about this invisible disorder. To learn more, view the Host Agreement on our website.
We‘ve made history! Come join us in making more.
NOTE: Carrie (pictured, left) is one of the Sensory Processing Disorder Foundation‘s original parent hosts. She has been involved with SPD-PC since its inception and was presented with our Sensational Parent Award in March 2008.
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