By Anna Rendell
To get anywhere, we need to know who we are. We need a level of honesty and openness to discuss our emotions. We also need to be aware of our comfort levels, of what we want to share and what we want to keep private. When raising children with disabilities, we need to figure out our story. Social media can be a great place to do this.
When my boys were young, I was obsessed with seeking out families like mine. I hoped that connecting online with other parents would enable me to become comfortable with my “new norm,” with the normal that nobody wants and no one tells you about.
I wanted to know how people coped with their child’s diagnosis of cerebral palsy; how many parents had twins with CP, like me; how they supported their typical children; and what the future looked like for my kids.
My boys don’t have the same issues as some other children with CP, so I also wanted to connect with parents who could relate to having children who are non-verbal and have developmental disability. I think I wanted to protect what I cherished in my boys, what was normal to me, but wasn’t normal to everyone around me.
After a while I found myself overwhelmed with the Facebook groups and Twitter feeds I followed. A lot of the content was negative, and I have always lived my life positively. So I learned how to delete the feeds that were less than positive, and choose only groups that were well organized, respectful, and like-minded.
I had so much to say that I started to write a blog. I needed a place to vent, to think, to process what I was going through. I wanted to voice moments with my boys, both positive and negative. I didn’t care whether I had a large readership.
Over time, I began to see that this little blog could make small changes in how my friends and acquaintances thought. I saw that my words had power and my perspective could influence the way others looked at things. Telling my story was no longer just about me. My story could generate broader understanding in the community.
Here’s an example.
When my boys started junior kindergarten they took a cab because they weren’t walking.
I made it our annual goal to have them ready to climb on and off the bus for senior kindergarten, so that they could ride with their older sister. We incorporated physio, occupational and speech therapy into this goal and they achieved it. But it takes them longer than usual to get on the bus.
We live on a main street, which means that dozens and dozens of cars wait behind the bus while my boys get on every morning.
I posted on my blog about how every day I wave to the cars lined up, hoping that someone will interpret the gesture as a sign of gratitude for their patience. I said I wish I had a sign that I could hold that said: “If you only knew how hard we have worked for this, you would smile.”
My goal was to lighten people’s moods if they were feeling angry or frustrated about the delay.
After running this piece, I received kind messages from a handful of friends and acquaintances. They let me know they were talking about my post and now they understood why it took my family longer to get on the bus.
Recently, a friend wrote to say she was in a rush one day and started to get frustrated sitting behind the bus. Then she saw me wave and realized who we were. She remembered my piece. She cried all the way to work, knowing how hard my family worked to achieve this goal and that each step up was a great accomplishment for us.
In the early days, sharing our stories on social media helps us as parents understand who we are, and what kind of support we need. But soon, we move from that place of “me” to one of “we.” We begin to foster understanding in our friends and families and in the larger community.
Follow Anna @annakrendell and at Sometimes you have to dance in the rain. I love her recent post titled Spinning bawl of grief.