'It's nice to know we're not alone'

Photo by Rachel Friesen

By Louise Kinross

Rachel Martens is hosting a CP-Net webinar on Thurs. Feb. 8 from 12-1 p.m. called Finding Community: Social Media for Families of Children with Disabilities. Rachel, who lives in Calgary, is mom to Luke, 11, who has mosaic trisomy 22, cerebral palsy and autism. She is also a family engagement facilitator for CanChild’s Facebook group Parents Partnering in Research. I met Rachel at a conference and she is a wealth of information on how to use social media to connect with families, advocate on disability issues, and share practical and emotional parenting support.

BLOOM: What are the benefits of social media for parents of children with disabilities?

Rachel Martens: I spent time on Twitter the other night on a healthcare leader chat, and they were talking about the role social media plays in mental health. They weren’t talking specifically about disability, but I think what they said was just as insightful for families like ours. Social media is a way to find community and find health information. It brings more people into your world, and gives you another tool to work with, in tandem with your clinical team.

It’s nice to know we’re not alone, especially in the rare disease community. This society doesn’t have a dialogue for struggle, and if your life doesn’t fall into the norm, it’s nice to have people who are experiencing the same thing. It’s a community where you can share the small and big victories.

Writer Brené Brown talks about how storytelling is ‘data with a soul.’ I can mentor fellow Facebook friends who have children with a similar diagnosis, and I can also look at the victories other parents have, and that gives me hope for my kid.

BLOOM: How has your personal journey with Luke been impacted by your participation on social media?

Rachel Martens: My son was born just before social media started taking off. When I first got a diagnosis, I didn’t even know what a ‘chromosomal rearrangement’ was. I had to go off to Google to see what that meant.

But beyond that,I leaned heavily on the Internet. I found a forum another mom had created at Yahoo News Groups. Then, when Facebook got going, all of those families went over to Facebook.

I got adopted into that community and we watched each other’s kids grow, and talked about challenges we were facing. At the time, there was no model for transitioning into being a parent of a child with a disability. Social media shortened the gap.

BLOOM: For a parent who isn’t active on Facebook, how would they start?

Rachel Martens: There are groups for a wide range of disabilities and groups that are more specific. Different groups feed you in different ways. I would suggest doing a search with the words ‘disability’ and your local region—so I would put in ‘Calgary.’ You’ll find local organizations and groups. You can also expand into reading people’s blogs. There’s one Facebook group that I randomly stumbled upon—called Mommies of Miracles—that is quite large.

BLOOM: I like that one too. What social media channels should parents start with?

Rachel Martens: When I mention Twitter to some parents I get the same reaction—they grimace. Perhaps it’s the idea of limiting your characters. But if you’re trying to tear down walls with advocacy, I’d jump right into Twitter. Many institutions and healthcare organizations have their own social circle on Twitter, and they’re very welcoming to hearing parent voices as well.

BLOOM: What about Facebook?

Rachel Martens: Facebook is a good place to find private corners where you can be vulnerable and share your fears. Many Facebook groups are private, and that’s where I’d start. It’s a place where you can bare your soul with people who understand. While Twitter is great for advocacy, you can get more practical information on Facebook.

BLOOM: Do you have any words of caution for parents?

Rachel Martens: It’s important to remember that you may have to do some searching to find a community that feeds you in the right way. You’re not married to any group. If you join a group and it doesn’t feel right, drop it and keep searching. Also, when you come across health information, it’s good to bring it back to your care team, to make sure you totally understand it.

I encourage parents to ask themselves ‘What do I want?’ from Facebook. Who do you want in that environment around you? Then adjust your privacy settings accordingly. It’s good to know, too, that Facebook just put out an option where you can take a break from seeing a person’s posts for a week or so.

I think you also want to do some self-checks, to make sure you’re not avoiding things you could be doing in the outside world, beyond your phone.

And you may want to stay away from certain content that could trigger you in a negative way. So, for example, I belong to a pediatric hospital group, and sometimes I learn about children who have passed away. That could be very triggering for some people, so you need to set healthy boundaries.

Social media is just one piece of the mental health and information exchange puzzle. Make sure you have other sources—like books or counselling—to feed your soul.

BLOOM: Can you describe the Parents Partnering in Research Facebook group you belong to that’s run by CanChild?

Rachel Martens: It’s a Canadian community of about 150 parents and professionals that talk about different aspects of disability-related parenting. The original intent was to bring parents and researchers together so they could work to socially understand each other. Due to the time limits of clinics, there are often knowledge gaps where you can only get so much of a parent’s story.

Parents and researchers both tell us ‘Wow, I understand what you do, or what you go through, a whole lot more after spending time here.’ It’s a great way for parents and researchers to brainstorm ideas.

BLOOM: Who is the group open to?

Rachel Martens: Canadian parents. We also have some researchers from other countries—like Holland and Australia.

To find out more about Parents Partnering in Research, e-mail Rachel at lukesbloggermom@hotmail.ca and put "Bloom article" in the subject.