Raising a child with special needs takes time, patience and resources. I often think about the resources parents had, or more accurately didn’t have 10 and 20 years ago. I think of my parents, who raised a child with special needs in the 70s and 80s when there were not the programs and support groups, websites and apps at their finger tips.
Today we have support groups, non-profits that focus on helping with advocacy, legal issues, and more, businesses geared toward special needs financial planning, special schools, schools with inclusion programs, online magazines, and of course social media.
Social media has done a number of things in the past several years to improve the support and information sharing for parents of children with special needs. There are more social platforms out there today than most of us would have ever imagined 10 years ago, two of the largest and most relevant to this discussion being Facebook and Pinterest.
Facebook, which remains the largest social network to date, has become common place in the lives of many families. What started for many as a way to catch up with old friends and share pictures of the kids with grandma has emerged into a means of daily communication and information sharing. Fan pages, public and private groups exist to show and provide support for causes of all kinds, children with special needs included.
Facebook has become a place for parents with children with special needs to share ideas and emotions, plan play dates, support each other when children are sick or having a rough time, as well as celebrate milestones together. After all, the video of your two-and-a-half-year-old taking his first step has very different meaning to ones friends and family than it does to a fellow mom or dad who has been in those same shoes with their child.
“It’s been life changing for me. Without Facebook this journey would be so much harder,” said Sara Weiss, who has a child with Down syndrome.
Lindsy Maners has a son with Down syndrome. “It also is a great, quick resource when I have a question whether medical, educational, behavioral.”
Facebook also allows parents with children with more rare diagnosis and medical conditions to network with more families with children with the same condition. A child with something rare might share that diagnosis with only one or two other children in Rowan County. Facebook allows parents to virtually meet, share ideas and information, and develop relationships with families around the world.
And then there is Pinterest, one of the fastest growing social networks to date. This social platform came on the scene in 2010 as a photo-sharing pinboard website used to create and manage theme-based image collections. It began as a network to share topics such as events, interests, and hobbies, but has grown into a visual idea sharing community where the sky might not even be the limit.
Today, moms have taken on Pinterest by storm, using it to share ideas, information and tricks of the trade. Therapists, teach and parents of children with special needs now have a world of information at their finger tips including educational ideas, therapy exercises and more.
Pinterest’s Mithya Srinivasan said she is constantly amazed and inspired by the creativity, compassion and love parents devote to their children, especially children with special needs. “We’re thrilled to hear stories about Pinterest playing a role in helping these families to discover new kid-friendly projects and recipe ideas, connect with other parents, and share great resources.”
Suzanne Perryman a blogger focusing on parenting a child with special needs says Pinterest is a great platform to get to know other parents better, research and share. “What Pinterest has done is help us connect on deeper levels and more interesting levels,” she said. “It allows us to know each other better. People you see more about your lifestyle. I think you get a whole picture.”
Perryman not only pins to share with others, but uses it as a tool for herself. “It’s my Google,” she said. “I use it as a research tool in may aspects of my life…I know the content I’ll find is based on people’s real life experiences.”
Here are just a few examples of boards focused on individuals with special needs:
As a parent I’m grateful for the resources and connections we have because of these virtual communities and look forward to what the future holds.
Jill Wagoner is the mother of a child with Down syndrome. She serves as an advocate, writer, speaker, fundraiser, and grant writer for organizations that support children with special needs. A former journalist and current marketer and public relations specialist, Jill has been published in many publications and blogs, including The Salisbury Post, Modern Parent, and Rowan Magazine. She is the Secretary of the Board of Directors at Partners In Learning.